Cytoxan Taxotere Chemo Ladies- February/March 2013
This thread is for the new sisters starting the Cytoxan Taxotere Chemo regimen in February and March 2013 so they can easily find each other. Hopefully each of you will find that support and comraderie as well as share practical tips and experiences to help you get through the chemo rounds. Please post your chemo start date and number of chemo rounds. Wishing each of you the best of luck and minimal side effects.
(edited to add: I have completed my chemo so this thread is for others, not me. I started this thread at the request of someone who will be starting chemo in March 2013)
******EDITED ON SEPTEMBER 28, 2018 ----YES!!!!!! THIS THREAD IS STILL ACTIVE AND WELCOMES ALL!!!!
*****EDITED ON MARCH 13, 2017 ----YES!!!!! THIS THREAD IS STILL ACTIVE AND WELCOMES EVERYONE!!!!!
****EDITED ON FEBRUARY 15, 2016 ----YES!!!!! THIS THREAD IS STILL ACTIVE AND WELCOMES EVERYONE!!!!!
***EDITED ON FEBRUARY 24, 2015--- YES!!!!! THIS THREAD IS STILL ACTIVE AND WELCOMES ANYONE NO MATTER WHEN YOU START YOUR CHEMO!!!
** EDITED ON MAY 16, 2014- YES!!!!! THIS THREAD IS STILL ACTIVE AND WELCOMES ANYONE WHO IS HAVING CYTOXAN/TAXOTERE CHEMO REGIMEN.
*EDITED ON APRIL 26, 2013- THIS THREAD WELCOMES ANYONE WHO IS HAVING CYTOXAN/TAXOTERE CHEMO REGIMEN NO MATTER WHEN YOU START YOUR CHEMO.
Chemo 4/24/2012Taxotere/Cytoxan X 6 & Herceptin B-47 clinical trial:4/24.5/15.6/5/,6/26,7/17.8/7. DX 2/17/2012 Encapsulated DCIS 4cm/IDC 2cm, ER+/PR-/HER2- (+1), Stage IIb, Grade 3,0/5 Nodes
Surgery 02/15/2012 Lumpectomy (Left)Surgery 03/14/2012 Mastectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)Chemotherapy 04/24/2012 Cytoxan, TaxotereTargeted Therapy 04/24/2012 HerceptinHormonal Therapy 09/06/2012 Tamoxifen
Comments
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Melrose, thanks so much for helping us newbies connect! I hope to see some others who are just getting started with Cytoxan & Taxotere Chemo join me here. I will have my Mediport put in on March 1 and first chemo treatment on March 7.
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Just dropping by to give you words of support and reassurance. I'm from the December 2011 T/C group. That thread was my lifeline through chemo and the friendships that developed from it have been priceless. Wishing all who find there way here, the best as you start your journey. There will be good days, and some, not so good. You will get through it and find strength in yourself that you didn't know existed.
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Thanks, AnnieBell. It's so encouraging to hear from women who've been through this and come out on the other side!
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Bump for the Cytoxan and Taxotere Newbies!!!
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Hello Fellow Newbies. Today is the big day! "I'm Off to See the Wiazrd" for my first T/C infusion. Yippie !
Anniebell - thanks for your kind words and encouragement
Melrose - I DID finally find the thread and thanks again for starting it.
All - May you all find Peace, Luv and Blessings as you start your T/C journey. I'll keep you posted (pun intended)!
Carolyn
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Carolyn, you've been in my thoughts and prayers. Hope all goes as well as it possibly can for you today and afterward.
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Welcome Newbies: Glad you have found this thread. If you need some practical info about this chemo regimen, let me know. I'll try to help you find the info you are searching for. fBTW: i did not do the penguin cold caps but there is great info in the Chemo Discussion forum and other places.... just type in the search "cold caps". Plenty of gals have used them. HUGS to each of you!!!
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Thanks again, Melrose. I don't plan to try the cold caps. It would be wonderful to keep my hair, but it sounds pretty cost prohibitive for me, not to mention extremely uncomfortable. My indulgence for the sake of my vanity was to get permanent upper eyeliner and eyebrows done. I will probably try icing my hands and feet to try to prevent neuropathy. I can't imagine freezing my head at the same time
Did you have much of a problem with neuropathy? -
While I was still in chemoland, I did have a little neuropathy... like my fingers may get stuck in one position after using them ( stirring with a big spoon; using pliers/tools). When they did get stuck I would carefully move them so they wouldn't stay in that one position. Before I had chemo, I used to massage my hands and feet but stopped doing that when I started chemo. I did not want to accidently break any capillaries in my hands or feet when I massaged them since one can develop hand/foot syndrome with chemo. ( the chemo breaks through the blood capillaries and it can be very painful.) I always made an effort to keep flexing my feet, toes, hands and fingers everyday. While on chemo, my feet hurt but I think it was bone pain and joint pain. (I'm not a young chickadee.) However within a month or two of being PFC, the aches and pains and neuropathy diminished. The icing may have helped the nails as well as the neuropathy. If you do get neuropathy, there are supplements you can take to help. I don't recall those off hand but I'll look for them and let you know.
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You are so helpful, thanks! I'm not a young chickadee either - 57. I'm hoping to be able to work as much as possible, but that requires using the computer keyboard and mouse all day.
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Hello All,
My first chemo infusion on Wednesday took a very long time but I am fine and really no worse for the wear, thank God. My schedule will be 1 - four hour treatment, 1 treatment the next day for white cell boosting, 1 visit with the Oncologist the next week for lab checks and questions and if all goes well with my white and red blood cells, platelets, etc., I will have my next treatment in 2 weeks. Then after a 3 week break in the fun, the process will start over again in an identical manner for 3 more treatments and I will be done. So, it is much better than I thought as far as the length of time goes and now it seems that things will be over and done with as far as the chemotherapy goes in approximately 4 months total barring any blood count problems. They did warn us at the chemo class that I will feel pretty good for up to 8 days after the infusion and then if I am to experience any side effects, they will kick in at about the 8-10 day time period after the infusions. I suspect my side effects will mainly be related to the nausea and severe reflux disease that I have had for over 20 years but I am very hopeful that they will be manageable with more medication of course (YUCK). Although it was originally thought I did not need the chemo, the large size of the tumor (3.2cm), the fact that I cannot tolerate the Tamoxifen at all and my strong family history pushed me into a gray area so I decided that 4 infusions of a "chemo-lite" course of drugs would probably be the only way I would not have to hear this cancer word again in my lifetime. Of course radiation will still be needed and will start after the chemotherapy. Yippie!
As mentioned it was a very long day that ended for me and my Sister looking for wigs and having no luck because I have a very BIG head. Funny, huh? I will forge ahead tomorrow on that front as my hair will start to fall out about 2 - 3 weeks after this first treatment. So, a new project!Other than that, I am walking the dog and lifting weights as much as possible to keep up my strength and stamina and drinking tons of water and fluids. A daily staple is my healthy diet is Activia yogurt, fruit and veggies, all forms of protein and my Kefir probiotic drink plus Ginger Capsules and crystallized Ginger to ward off the nausea. I am hoping to start taking a free yoga class for breast cancer patients and survivors very soon too. I have worked as a Registered Dietitian for over 20 years so if anyone out there needs any suggestions or has suggestions on food choices I would be happy to share.I hope this journey for me and all of you is lined with peace, love and blessings daily.Fondly,Carolyn -
Hello again Folks:
Has anyone tried probiotics for the gut? I have severe GERD (massive heartburn) that just kicked up again today after my first chemo (T/C) treatment. The RN told me it was because of the steroids used in the cocktail. I've read many differing opinions on using probiotics for GERD and some are not so good. If any of my fellow warriors have insights to help with this persistent problem, I would surely appreciate knowing about it. Thanks in advance. Peace!
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Carolyn, I am so glad to hear from you and to know that you are doing so well so far. Walking the dog is part of my daily routine too. Lifting weights? You inspire me.
And I'm excited to hear that you are an registered dietician. I'll look forward to hearing anything you have to say about food and nutrition during chemo. I've been experimenting with smoothies and pureed bean and veggie soups, but who knows what I'll have a taste or aversion for?
Your diagnosis and decision to go ahead with chemo sound so similar to mine. I got a private message today from a well meaning lady on this site questioning whether I really need chemo. Arrrggghhhh! Pulease! The decision was agonizing enough, but it's made and I have my port put in tomorrow. This is not the time. All I know is that if this cancer comes back some day, I don't want to look back and regret not having done all I could to fight it now.
Anyway, you're in my thoughts and prayers.
Blessings,
Gail
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Hi Gail,
I have been having an Egg in a Mug breakfast 2-3 times per week. It is a fun, easy way to microwave an egg or two. Be sure to spray the mug with cooking spray or lightly oil or butter the inside if you prefer. Next take 1 or 2 eggs and scramble them right in the mug with a little milk or water. Today I added a small handful (1/2 handful really) of shredded cheese and some fresh spinach and put the whole concoction in the microwave for 45 seconds. Remove the mug and stir the mixture and put back in the microwave for 15 more seconds or until the egg is fully cooked. Let cool for 1 minute and enjoy! Remember to lubricate the mug as mentioned above though or you will never get the remnants out again. Substitute 2 egg whites for 1 whole egg if you would prefer no fat and less calories. Also use any ingredients that you have on hand to flavor the egg mixture. I just love cheese and spinach.
Keep strong and do not fret about your upcoming chemo venture. My MO suggested that I take Ginger Capsules (500mg) twice daily for 3 days before and 3 days after the infusion and it seems to keep the nausea away nicely. I purchased them at Walmart in the Vitamin section. Also, when you get the shot the day after chemo to aid in the white blood cell production, take a Claritan or Zyrtec 1 day before, the day of and for 3 days after the shot. (again, I buy the generic version of Zyrtec at Walmart for a cost savings). I was told to do that today AFTER I got my shot and broke out into hives and a rash 30 minutes later. A little scary when I looked in the mirror but all is well tonight.
Thanks for your thoughtfulness and for checking in with me. Peace and blessings to you today and always.
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Gailann I too am taking the treatment just to have the peace of mind I did everything I could to wipe this out. It was sooo hard to make the decision.
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Hi Melody, it's good to have you join us here.
So you started chemo Feb. 20? I'm sure Carolyn and I will both want to hear how it's going for you, since you're about a week ahead of her and she's a week ahead of me.I had my Mediport placed early this morning and it went well. Friends of mine who've had chemo tell me that in the coming months, I'll be very thankful for that foreign object under my skin. I came home, had a nap, some lunch and coffee and plan to work 3-7 PM, which is the second half of my work day. I'm blessed to be a telecommuter, so I can work from home most of the time. I don't like taking Hydrocodone, so I'm getting by with extra strength Tylenol. Trying to save the paid sick leave for when I really feel crummy farther down the road.
Carolyn, I'll have to try doing an egg that way. I like frittatas with lots of veggies. Thanks for the suggestion.
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Here is a book that I was given before I started chemo which was helpful with the eating;
Eating Well Through Cancer by Holly Clegg and Gerald Miletello, MD - this book has chapters on what to eat when you have certain side effects and what to eat the day leading up to chemo and recipes, shopping lists and tips. It was good to have a book right there that I could just pick up and look at and not have to think of where to find food information.
Another book that I have is the Cancer Fighting Kitchen by Rebecca Katz. The recipes are pretty good and the pictures are great. I remember there were times that I didn't want to eat but knew I needed to and looking at pictures of food in recipe books and magazines help stimulate my desire to eat.
Also if you have favorite foods and you want them to stay favorite foods after you finish the chemo, try not to eat them during your time in chemoland. Since one's tsste buds go on vacation after the chemo infusion, those favorite foods may not taste so wonderful.
Have a great weekend......
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I am due to start CT on March 13. They are saying 4 treatments at 3 week intervals. That seems short. And they said nothing about a port. I'm wondering if I should seek a second opinion.
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Hi GailAnn, I've been really lucky with few side effects, today at day 10 has been a very lazy day for me I'm really tired which is new. I had to have a ct of my chest today because of chest pains and a little shortness of breath but it came back fine.
I have opted not to get a port since I didn't have one in for the first treatment and I only have 3 to go. If I need to I'll get a pic line because my vein isn't very happy.
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Melrose, I will try to get my hands on those books. Hey, maybe the key to post chemo lifelong weight control is to eat all my "naughty foods" during chemo, so maybe I could develop an aversion to them.
Melody your regimen sounds just like mine except that the oncologist thinks I should have two more cycles if I tolerate the first four ok. It's encouraging to hear that you're doing so well.
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Hi all. I just found this thread. I too qualify to be a member of this elite group of ladies. I am on day 8 post treatment. I had the Neulsta shot the day after my first chemo treatment and it was rough going last Saturday night through Tuesday but came through and made it it the other side. I'm also trying to work full time through this but missed 2 days so far, 1 for treatment and the other was for pain. Before this diagnosis I was working 50-60 hrs a week. That will definately not happen again for a while! I was also initially told 4 treatments but then was told if I can tolerate 4 then I need to do 6. So I guess I am 1/6 of the way through this rough ride now.
It was definately a hard decision to make to agree to this. I too was in the "intermediate" area. Stage 2, Grade 2, onocoscore of 20. The deciding factor for me came when I got the final pathology back and found that there was a 4mm mass in the lymph node that hadnt been previously detected. The MO left it up to me and you all are right, the decision was excruciatingly painful to make but here we all are.
I've got a wig, a halo wig and a couple of hats for the big event is supposed to happen next week. The waiting on the hair to come out is a little unnerving for me...not knowing when and where I'll be or how I will react. I can already feel what can be described as something similar to having hot needles prickling my scalp and some itching. So now we wait...I'm hoping for strength to get through the hair loss part.
Hoping to have a good, SE free weekend for all of us! -
Hello Ladies, glad to find a group for all of us doing the same treatments. I have a similar story to all of you. My onco dx was 17 which put me right at the edge. My MO recommended chemo due to my age (40) and size of my tumor (3 cm).
I'm starting on the 14th and get my port next week. I didn't think too much about whether or not to do the chemo. I decided from the beginning that I'd do everything I needed to, to give myself the best chances for no recurrence. I'm glad to have you all to go through this journey with.
GailAnn - it looks like we have the same Dx & surgery.
I've talked alot with the ladies from January/February and they have been so great. I'm also in a group on Facebook with many of them. I was so nervous to start this but reading what they have to say daily has really made me feel more confident about this being do-able. The boards and that FB group have been so fantastic. Good to know we're all here for each other!
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GailAnn it looks like we have the same Dx & surgery.
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Well this is a train I thought I wasnt going to be jumpin on last week ! Thanks to the Symphony tests showing that I have a high rate for reoccurance here I am. 30% RO without chemo 12% with. Not too happy about either one of those stinkin numbers ! Have my first treatment on March 8. More afraid of the immune system booster than the chemo !
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GailAnn- You are too funny!!! Love how you thought a way to stop eating favorite high calorie food post-chemo!!!
LW122713- I know that dealing with the hair loss is not easy for anyone. Fortunately, you will not wake up one morning and find that all of your hair has fallen out and is laying on your pillow. It starts to come out a little and then over the next few days the fall out increases. I can tell you that the hair falling out everywhere is annoying more than anything else. I know the moment I realized my hair was really going. It was when I was in the shower and ran my hand through my hair. There was a little more hair than usual. I knew then it was going and I had a choice. I could either have a meltdown in the shower or recognize the situation for what it was and clean my hair from the drain. I chose to do the later. I also opted not to get in front of mirrors and look at myself. I knew that if I did that, it would only upset me more. I didn't shave/buzz my head when the hair did start coming out. I just left it alone since I wanted to see how much would stay. It was my own personal science experiement. To my surprise, it didn't all fall out. After 6 rounds of chemo, I still had a very thin veil of hair. As my new hair grew in, my pre-chemo hair did finally fall out. I had a wig but never wore it. I wore baseball caps, bandanas, Buffs, hats or nothing. You will find your way through the hair part of your time in chemoland and works best for you. You see, there is no right way or wrong way; only your way and on your terms. Always remember that you are beautiful because your inner strength will come shining through.
Wishing the best to all !!!!
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Hello
I am having 4 T/C treatments with 3 week breaks myself and took my first one last Wednesday. I opted to NOT get the port either and it worked out fine. 3 more to go and I'm sure my veins will hold up. Best of luck to you. I'll send more info. when I have it. Do ask your doctor about Ginger capsules tho and taking an antihistamine before you get your WBC shot. I took the Ginger Caps (500 mg) twice daily for 3 days before and 3 days after my T/C and it helped keep the nausea manageable. Also I had an allergic reaction (hives and itching) after my WBC shot the day after my treatment because they forgot to tell me to take Claritan the day before, the day of and for 3 days after the shot. I use the generic form of Zyrtec (same as Claritan) and buy it and the Ginger caps from Walmart for cost savings.
Best of luck and prayers and hugs coming your way from Texas!
Carolyn
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cmbernardi- FYI- the chemical contained in Claritin and Alevert is Loratadine. I'm not sure that Zyrtec contains the same chemical as the same as Claritin. There is an ongoing clinical trial to see if Loratadine helps with the bone pain from the Neulasta shot/Neupogen shots. Not everyone including oncos and infusion staffs know about this use of Claritin to help with the bone pain. You may want to let the infusion staff know at your next infusion that you had the hives and itching after your first chemo and Neulasta shot.
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Hello I am having 4 TC treatments every 3 weeks started March 8 The Doctor told me I didn't need a port I hope she is right. Glad to see others going thru the same as me I was thinking I was alone.
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Melrose, thanks for the tip about the Claritin vs Zyrtec. I used Costco brand Zyrtec (Allertec) for allergies, but I think I'll get some store brand Claritin to take before my first infusion and Neulasta shot just in case it does have an edge over Zyrtec.
It's interesting to hear that you experimented to see if your hair would ALL fall out. Maybe I'll try that too. Everybody else has said to just buzz it off when it starts falling out. My hair is super thick and I've cut it shorter than I usually wear it, hmmm, I wonder if I might keep some of it. Time will tell. I have bought some Buffs and some hats from www.softhats.com, I just can't imagine wearing a wig, although one of my dear friends has actually offered to cut off her longish hair if we could find out how to get a wig made for me. Sweet thought but it "wigs me out" a little
Carolyn, I'm going to get some of those ginger caps for sure.
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GailAnn- You may want to keep taking the Zyrtec to see if that takes care of the bone pain. It just may. I did get a wig through the American Cancer Society Look Good Feel Good program. They have make up session and will give you a free makeup bag and also you can get a free wig. As for my hair after chemo, I did notice that the hair around my hairline stayed the longest. So when I wore caps/hats, it looked like I just had short short hair. You may also find yourself rubbing your head more often and touching what pre-chemo hair stays. I found it rather comforting for some reason to feel what little hair I had left and to touch my head. One other thing I did for myself was not to stare at myself in mirrors. I knew it was one way to protect myself from getting upset about my changed appearance.
You can also get ginger candy/bites at Walgreens and Whole Foods. I also drank ginger ale for a few days after my chemos. The bubbles seem to make my tummy feel better. One of my side effects from chemo was burping (and I mean burping like a drunk sailor.) In fact, that was probably one of the worst side effects I had.
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GailAnn it looks like you are starting chemo the day b/4 me. Did they have you do any Genomic oncotype test or the BRCA test before deciding on chemo treatment? I am scared to death to get some of the reactions and side effects with these two drugs. anybody have neuropathy?
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All,
I called immediately to the infusion center after the hives started when I took the Neulasta shot. While I did have Zyrtec on hand and took it, I then had to take a Benedryl too. Today I will buy the generic Claritan because the bone pain is still present. I have a soar throat too and am eating Popsicles. What's up with that? Is my larynx irritated after just one T/C infusion?
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melrose- thanks for starting this board. It's nice to have a thread on just those getting TC.
My oncotype was 28, so I am getting 4 rounds, 3 weeks apart.
wrh58, I will share my experience after my 1st round on Feb 15. All of our bodies are different and even though we might be getting the same cocktail, we might not have the same exact experience with SE.
I took decadron twice a day, the before, the day of and the day after chemo. I also got more decadron just before the drugs as well as Zofran. The decadron is to prevent the swelling that the Taxotere can cause, and I didn't get any. The Zofran to prevent nausea.
I had no side effects at the infusion center and felt pretty normal the day of the chemo, maybe just a little tired. I did wake up at midnight the day I had the chemo and my stomach felt a little weird so I took a Zofran. But I never needed to take another.
Decadron made me very hungry, but nothing really tasted good after the chemo. It also made me moody and a I woke up a few times in the night (a bit wired).
Constipation- yep, and the Zofran really makes it worse. I tried 2 colace caps, but it wasn't enough. So I took Senokot-S and that worked in about 24 hours. After that, I needed to take it again at the end of week one. I think next time I will start the colace before chemo. I did drink lots of fluids.
Nausea- I didn't get any and I was most worried about that SE. I followed directions to eat many small meals and keep something on my stomach. That helped.
Loss of taste- my taste buds definitely checked out for week 1 and some of week 2 after chemo. Red meat tasted horrible and I couldn't really taste much of anything except sweets. I enjoyed eating oatmeal, puddings, sorbet, popsicles, greek yogurt and Carnation Breakfast Essentials. Those tasted good and helped me get the added fluids you need after the chemo and protein to help you rebuild what you lose. I could still taste chocolate so that was a nice pleasure!
Mouth sores, sore throat and thrush- I got this 2 days after chemo. I got a prescription for clotrimazole to knock out the yeast (thrush) that I sucked on 5 times per day and a mouth rinse with benadryl, antacid and lidocaine to soothe the sores. I felt much better in a few days. Others on these boards have suggested to use mouth rinse with baking soda and salt to prevent this and I think I will try that this round.
Fatigue- I got my chemo on a Friday and was tired for the first 4 days. I felt good enough to work (mostly sitting at a desk and using computer and phone) after that.
Runny nose- the chemo wipes out the hairs in your nose, so lots of dabbing with Kleenex, I still have this.
Dry skin- very dry, I keep slathering myself with Curel. I still have this too
Infection/Fever- I didn't have this problem. Your white count will be at its lowest at the end of week 1 and in to week 2. I stayed at home (I'm fortunate that I can work at home).
Hair loss- it started with just a few hairs falling out on day 12, and then it progressed to falling out in clumps by day 14. I had my mid-back length hair cut into a pixie the day after chemo. I had it shaved off on day 15 and have been wearing a wig when I go out (I hate the wig), and lots of cute head covers that I got at headcovers.com. The head covers are super comfortable and look good with a little makeup and some dangly earrings.
Neuropathy- I got tingling and numbness in my fingers and toes starting on day 9. It pretty much continued this entire week, but is mostly all gone today. Taxotere can cause this. My MO will decide whether or not to lower my chemo dose for the next round.
I thought all of my SE's were tolerable and I hope you have minimal SE's!
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whr58, my Oncotype DX number was 21. The chemo was a hard call, but I think I've made the right decision. I told the oncologist up front that I didn't want to be treated with any chemo drug that would risk damage to the heart. I think (hope) I can persevere through anything that's likely to be be temporary.
TMM60, I appreciate your detailed account of your experience. Though we'll all react a little differently, I feel like the more variety of experiences I hear about, the better I'll be prepared for whatever comes up.
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TMM60- Love the Zofran for preventing the nausea but hated the light case of constipation that I got from it. I ate for just about every breakfast--- bowl of rolled oats plus wheat bran plus banana and blue berries plus milk while I was having chemo. I also ate one-two Sunsweet Ones prunes with every meal ( those prunes can be found at Target in a tall clear cylinder container near the raisins and are individually wrapped prunes that are really sweet and moist.) I ate those prunes because I couldn't drink another drop of prune juice even though I tried. I also cut those prunes up and ate them on toast like preserves which wasn't too bad. I also ate high fiber fruits and veggies to help with the situation. I fortunately did not need to take any OTC meds for the constipation although I had some.
Here is the recipe for the baking soda and salt mouth rinse. You need to mix a fresh batch every time you rinse:
1/4 teaspoon baking soda + 1/4 teaspoon salt + 1 cup of warm water
I also increased the salt when I had mouth/tongue sores or just rinsed with salt + water which seemed to help.
Wishing a good week for all and minimal side effects.
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Oh girl we are chemo twins. I start on the 8th also. Scared spitless !
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I think having lost my mom to ALS (Lou Gehrig's disease) has helped my perspective so much. The heavy, heartbreaking thing about that diagnosis is that there is absolutely nothing you can do except manage the symptoms until the disease kills you, which it inevitably will. There really is no cure for that disease.
But with breast cancer, for most of us, there is so much we can do to improve our overall prognosis. So I keep reminding myself that I chose to have the chemo and no matter how miserable it makes me for a few months, it should reduce my chance of recurrence. My oldest daughter said, "Mom, I know you are doing this for us as much as for yourself." She is so right.
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Good luck to all of you.
I did that starting in mid January 2009, and after 6 rounds of 8 hours of cytoxin and taxotare every 3 weeks, I did 7 weeks of daily radiation. I'm fine now, and would do it again in a heartbeat if need be. It isn't fun, or anyone's first choice, but it's doable, and if it's what you need to keep yourself safe, I highly recommend that. The idea is to walk out of the tunnel and into the light. The rest of your life is waiting.
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Yellowdoglady, thank you for that positive, encouraging perspective! I love it! I, too, am a dog lady - have three of them, but I guess I'm a blackwhitebrowndoglady! Hey, a girl has to have her therapy dogs, right? Dear me, I'm also a cat lady as of about a year ago, but have been a dog lady for much longer. One of my two cats went missing a week before my lumpectomy and hasn't shown back up. I came out of anesthesia crying about...my missing cat! But I still have four furry friends at home and a wonderful DH to help take care of them and me.
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Hey Ladies, I've been thinking about trying L-Glutamine to try to prevent/minimize neuropathy from the Taxotere. There's a thread here on BC.org about it and I've also found some info on webmd and some other cancer related sites. I can be a hard sell when it comes to supplements and alternative medicines, but it seems the most negative thing traditionally minded oncologists have to say about this is that the evidence is mostly anecdotal, but it can't hurt (no contraindictions.) Some gals indicated that their MO or nutritionist recommended it. Apparently there was a study done a few years ago that showed it helped colon cancer patients.
Has anyone else heard anything about L-Glutamine for chemo induced neuropathay or actually tried it? I gather you can find it at GNC and health food stores.
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I have been concerned about doing B6, L-glutamine for neuropathy prevention. There just doesn't seem to be any scientific evidence to support effectiveness and there is some literature that too much of the supplements can actually cause neuropathy. I see my MO on Wednesday pre chemo round 2. I will ask her about this and let you all know what she says.
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Does the Magic Mouthwash make the sore throat and mouth sores go away? Can I eat regular food again after using the Magic Mouthwash? I am 5 days post T/C chemo (my first treatment), although that info. does not show up on the thread for some strange reason.
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The Magic Mouthwash is supposed to help with the mouth sores (aka oral mucositis). Here is the link to drugs.com that talks about Magic Mouthwash----http://www.drugs.com/ppa/magic-mouthwash.html since I'm not sure what exactly magic mouth wash forumula you have.
As for eating, the Eating Well Through Cancer book says to try to
- avoid tart, acidic or salty foods and drinks such as citrus fruit juices, picked and vinergary foods, tomato based foods and some canned broths.
- avoid rough textured foods such as dry toast, granola and raw fruits and vegetables.
- Eat food that is cool or room temperature since very hot or cold foods can cause discomfort.
- Limit alcohol, cafeeine and tobacco
- Avoid spices such as chili poweder, cloves, curry, hot sauces, nutmeg and pepper
- Season foods with herbs such as basil, oregano and thyme
- Use a dtaw for liquids and pureed bland foods
- Cut food into small pieces
- Softer and easy to swallow foods include soft, creamy foods such as cream soups, cheeses, mashed potatoes, pasta, yogurt, eggs, custards, puddings, cooked cereal, ice cream, casseroles, gravies, syrups, breakfast type recipes, milkshakes and nutritional liquid food supplements (Ensure). Other soft foods are applesauce, bananas, watermelong, cottage cheese, scrambled eggs, smoothies, jello, oatmeal, cream of wheat, mashed potatoes or sweet potaatoes, popsicles.
Hope this answers your questions and helps.
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Thank you very much Melrose. This chemotherapy stuff is not all that it is cracked up to be!
Carolyn
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I'm watching and learning enough not to be cocky if I don't feel bad at first
Melrose you're going to be our hero (heroine 
) Carolyn so sorry to hear the crud is starting for you. -
@GailAnn - the yucky mouth and throat is much better after just 1 day of using the Magic Mouthwash (some call it Miracle Mouthwash). I would ask for a prescription for the stuff BEFORE you even leave your first chemo treatment. And DO DEFINITELY purchase and take the Claritan the day before, the day of and the 3 days after your WBC (Nuelasta) shot. I experienced severe bone pain not to mention the rash and hives 30 minutes after taking it. The bone pain lasted 4 days and seems to be subsiding today. I will ask my MO (who I see tomorrow) for a pain medicine in case that happens again because I cannot take NSAIDS and Tylenol does not even touch the pain I experienced. I do not mean to scare you but want you to be well informed. Be safe and well fellow Warrior. And if you have any more questions, feel free to ask at any time as we are all in this together!
Carolyn
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Thank you Carolyn. You are not scaring me at all. All of these are SEs I've heard about, so I welcome any tips that might help relieve them. I already have my Claritin and ginger capsules and will ask about the mouthwash.
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I just talked to my oncologist's nurse and she had no concerns about me trying L-Glutamine and they definitely recommend the Claritin before and after the Neulasta shot.
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GailAnn- It is Vitamin B-complex and L Glutamine powder that I have sitting on my desk to help with neuropathy. I didn't take any supplements during chemo to help prevent neuropathy but whatever neuropathy I did have which was mild is gone. Make sure you keep walking, wiggling your toes and fingers and just keep moving to help keep the blood circulating. You may also want to wear crocs/shoes/sneakers around the house and not go barefoot.
We just will keep hoping for minimal side effects and whatever ones come your way, can be easily managed.
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Thanks Melrose. My biggest concern about neuropathy is that if I get it bad in my hands it could keep me from working and I'm hoping not to need to need to miss so much work that I exhaust my paid sick leave.
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How often do you have to take the Claritin?
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Starting the day before the Neulasta shot and for several days after. The Neulasta shot is given the day after the chemo treatment.
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The drug protocal for the Claritin under the ongoing clinical trial is to take the Claritin for 7 days beginning the day that the shot is received. You would want to take the Claritin early enough in the day before the shot so that it is in your system. I took the Claritin for 9 days and did not experience any bone pain from the Neulasta shot. I took my Claritin in the morning and received my Neulasta shot in that afternoon.
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Well, Ladies, my DH took me out tonight for the last Tex-Mex comfort food I'll probably enjoy for awhile. It was heavenly...sigh
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I start on March 8. Doc said they would give it a go without a port for only four treatments. I have very small deep veins (only thing small on me). Sure hope they can get a good one. best of luck to you.
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All the best to you tomorrow Sister Warrior. The first treatment really is a breeze. Hugs and prayers coming your way tonight, tomorrow and into the future!
Carolyn
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My daughter called from Dallas and as we were talking she asked what I did today. I said, among other things, "Well, I drank a lot of water and peed a lot."
Thanks for your well wishes ladies. I feel as well prepared as I can be and not anxious at all. -
GailAnn- Wishing you an easy time with your first round of chemo. Just remember that the first round may take longer than the rest of them since you will be learning the procedures of the infusion center and there is the usual blood testing that has to be done before you get your chemo. You may want to take a sandwich/snacks with you so you can eat if you get hungry. Do eat breakfast tomorrow morning since any pre-chemo IV drugs that you may get are handled much better if you have food in your tummy. So don't go to the infusion on an empty stomach.
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Best of luck with your first treatment. We have similar medical problems and I too went without a port for treatment #1 and it was OK. Do remember to ask about taking Ginger Capsules if you have problems with nausea (500 mg twice daily - 3 days before and 3 days after chemo), if you are getting the shot the next day for WBC building (Neulasta) take a Claritan the day before, day of and 7 days after to relieve bone pain. I also needed Magic Mouthwash (some call it Miracle Mouthwash) 4 days after my first T/C infusion to relieve the soar throat and mouth sores. Saw my Oncologist yesterday and got a pain medicine because the Claritan did not work for me. Hugs and prayers to you.
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So today I start doing drugs. Never thought it would come to this.
Carolyn, I've taken my ginger caps.
Melrose, I ate my breakfast - high fiber Uncle Sams cereal.
If I feel up to it, I'll work the second half of my split shift, 3-7, so if y'all don't hear from me for awhile, don't worry, it doesn't mean they killed me.
Starynights, we can do this! And about right now, I'm not crazy about my port. I had it put in Friday and I'm still having a hard time finding a comfortable sleeping position.
Later,
Gail
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GailAnn- hope today goes smooth as silk for you
Starynights- same for you tomorrow
Tomorrow, I have TC#2- I will be half way done! Yea!
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Starynights, as so many of the other gals have said, the infusion itself isn't hard. Of course I do have a port and know you were concerned about the IV. My treatment went fine and I am home, have gone with my husband to walk the dogs and plan to work 3-7 PM since I'm feeling OK. I am a telecommunter so I work from home.
All I notice so far is that my skin feels a little "crawly." I'm drinking lots of water.
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GailAnne,
Super great news!
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Hello everyone - I'm new and I may be joining you in chemo. Just met with oncologist and will most likely be starting around March 25. Thank you for all of the info. I'm trying to prepare myself and also trying to get my immune system strong.
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GailAnn- Way to go!!! Hopefully you will feel fine tomorrow and maybe the next day so you can do whatever you want to do or need to do. As I recall, I always felt the slide down sometime on the 3rd day after my infusions.
Starynights- Hope you had an easy time in the chair with your first infusion.
TMM60- Good luck tomorrow and wishing you an easy time in the Big Girl Chair. It's great that you will be halfway finished with the chemo after tomorrow's infusion!!!
Wishing each of you minimal side effects and restful times.
Skyglenn- Welcome!!
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I don't know if you all lurk on the Jan Chemo group, but those ladies are a hoot! I really feel uplifted by their sense of humor as a way of coping with this. Since I am a horse woman and there are so many of you Texas ladies on this board, I thought I'd share what Cancernoway posted today:
Courage is being scared to death, but saddling up anyway. - John Wayne
Congratulations to all you courageous ladies who stepped up to the chemo bar today or will be soon! We have our posse assembled, saddled up and ready to hunt down and kill all of those nasty bugger cancer cells!
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Hi all,
I had CT too and just finished the end of Feb so thought I would share a couple tips I wish I knew going in...
Neulasta...claritin seemed to help me with the aches.
Also ask the nurse giving it to you to deliver it Slowly..the slower the better. Cuts way down on the sting.
Thirdly, ask if getting the neulasta after 24 hours of chemo is right for you. I didn't have it after the first round until a week later when my white could had dropped to levels so low I developed neutropenic fever and was hospitalized. Everyone's body is different but its worth asking the question. I had the neulasta after each of the other rounds the day after and was fine. ( I guess there is a rule that you have to wait at least 24 hours after chemo before neulasta)
Hydration....If you are not eating or drinking or otherwise feel crummy ask if IV hydration would help you. I had to have a few days of it after each treatment as I just wasnt able to get the fluids down...don't wait a week ( like I did) ask as soon as you notice a problem.
decadron/dexamethasone- I had this med the day before, day of, and day after chemo. I learned and experienced that for some people coming off this med has an emotional piece..anxiety, crying and panic/fear. Just knowing it happens sometimes is all I wanted to share...so if you find yourself inconsolable for a day or two after the last dose know that the decadron could be a major contributing factor.
Thinking of you...Ella -
Thank you everyone! Ella1 we appreciate a new voice of experience!
I wanted to try icing my hands and feet, so they got out the frozen gel slippers and mittens for me. I managed to keep the slippers on for the duration, but took the mittens on and off. The nurse said not many patients are able to tolerate freezing the hands for very long. They only do that during the Taxotere infusion, not the Cytoxan.
I had one of my favorite fun movies to watch on my DH's netbook and that was a wonderful distraction.
Starynights, I wanted to tell you that I am still feeling OK, just a little "weird." My mouth is getting dry and my skin is a bit tingly all over. I managed to work my 4 hour PM shift.
Make sure you go in very well hydrated!! I will be hoping and praying for the best experience possible for you.
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GailAnn- I wore knitted hand gauntlets (fingerless) when i iced. Those helped keep the rest of my hand warm since I was just trying to ice the nails. I wore thin sports socks on my feet when I iced. I didn't want the direct cold on my toes. I was lucky that I didn't have any nail damage on my fingernails or toe nails... just indentions that on my fingernails marking each chemo and some light discoloration. No lifting of the nails or loss of nails.
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Skyglenn - Welcome to this brave new world. You will find alot of help and advice from the great folks that post their thoughts, advice and experiences here.
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I had my second round today. I didn't get an allergic reaction to the Taxotere the first round, but did this time. I got suddenly warm and flushed, had tunnel vision and a heavy chest. They stopped the infusion and gave me benadyl and more decadron. All was well within 15 minutes or so, so then they restarted the infusion slowly and worked up to full rate over time. No more incidents and the rest went smoothly.
The benadryl made me very sleepy and I wanted a nap, but the decadron wired me up- legs were restless. Half of me wanted to sleep the other half wanted to run. Weird.
Hungry tonight, had some chicken noodle soup that I had made- that tasted good.
cmbernardi and gail ann- hope you are having comfortable night with minimal or no SEs!
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TMM60 I also had a reaction my first round very similar to yours, breathing was hard. But they dosed me with more steroids and benadryl and I was OK and resumed my treatment at a slower pace. My 2nd round is next Wed. and I'm a little nervous - that was scary! Oh man did I want to eat for about 5 days around that time.
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Yeah, it was scary because it came on so fast. Nurse said she'll alert the MO to add benadryl to the pre meds next time. I have been snacking like a hoover tonight, but also feel like I want to hit the bed early. I may take an Ativan before bed to help me sleep with the steroid wiredness.
Took some Senokot-S tonight fully anticipating the constipation I had last time (I had taken colace night before chemo)
I've also been doing mouth rinses with 1/4 tsp salt, 1/4 baking soda in 1 cup of warm water to help ward off the nasty mouth sores and thrush I got last time- can't hurt.
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Wow, TMM60 & Melody, that allergic reaction to the Taxotere does sound scary! I just keep thinking the more I hear of other people's varieties of experiences, the better prepared I am for whatever may come up with me.
I am learning so much on this thread. I'm also using the baking soda & salt water rinse hoping to prevent or minimize mouth sores. Yep and taking Colace and Miralax too which seem to be doing their job so far.
Starynights, I hope all went well for you today.
I've had a very good day today. Generally I just feel a little off, but I was able to put in a full day of work, go get my Neulasta shot, walk the dogs with my hubby and cook dinner with some help from my sous chef (that would be the DH again, he really is a dear.) The nice thing was that I also felt like eating that dinner. I know worse days are around the corner, but I'm thankful for the good ones while they last.
I had Claritin and Ibuprofen both in my system when I went to get the shot and so far am not feeling anything from it.
I'm taking the ginger caps twice a day as Carolyn recommended for nausea and also taking L-Glutamine to try to ward off neuropathy and mouth sores. My MO is aware and has approved of both. He did tell me in no uncertain terms to lay off the soy milk, though. I know there are different views on that in the medical community, but he comes down against soy consumption for patients whose tumors were ER positive and mine was very much so. I'll definitely follow his advice.
We got the results back from my CYP2D6 test and learned that I am in the 10% of women for whom Tamoxifen is not effective - all the more reason for me to persevere with the chemo and try to go the whole six cycles. AI's may be an option for me but I'm not thrilled at the idea because I already have ostepenia and am only peri-menopausal, although I expect the chemo will push me over the edge. We'll cross that bridge when we come to it, since I have to get through chemo and radiaion first anyway.
Best wishes to you all,
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Hi GailAnn what is the cyp2d6 test?
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It a blood test that shows if you're likely to benefit from Tamoxifen. I've read that 2 large studies show it might not be of value, but many doctors think it is and my MO is one of them. Supposedly about 10% of women will not metabolize Tamoxifen properly and are likely to experience the side effects but not the benefits. I am in that 10%. Of course decisions about hormone therapy are farther down the road for me.
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Hi. Is anyone having depression coming off chemo/steroids? Day four seems my worst. I'm also having jaw issues - like coming out of being numbed for a filling but so much worse - throbbing numbness? So weird. My neck/throat skin seems numb too. Am I losing it? It's been a rough few days. Looks like my recon will have to be redone after chemo.
Thanks for any help or advise. -
Hello Ladies,
I just wanted to pop in to offer my support and prayers as you begin your chemo journey. I had my first of 4 Taxotere/ Cytoxan treatments one year ago today. The support I received from the incredible women here, including the lovely Melrosemelrose, gave me the strength and encouragement I needed to get through chemo. One year later I am doing great and have been wigless since November (about 6 months post chemo). You will get through this and you will come out of it stronger!! I have no lingering effects from chemo except "chemo brain" which is probably not even the result of chemo but it is a convenient excuse for my forgetfulness!
I wish you all the best! -
Hello ladies, I'm in the UK and due to start chemo on 15th March. I think we have a different regime over here. I'm sure my MO said it would be FEC. I'm also going to try out a cold cap and am probably worried about that the most as I hate the cold. But with 2 weddings to go to this year I figured it's probably worth a shot. I've got a hydrogen peroxide 3% mouthwash I'm hoping to use if I have any problems. I was very reluctant to undergo chemo treatment but my Onco score came back as 44 which kind of made the decision for me. Really good to hear how you're all coping with the treatment as it gives me hope that it won't be as bad as I fear.
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Lmimp64 I'm on day three after my first infusion and not feeling depressed, but very weird, sort of off. I'm experiencing random sensations like what you describe as throbbing numbness too - in my head, ears, jaw...
And the constipation from the first two days has giving way to some diarrhea today.
But it could definitely be worse. No nausea to speak of and so far no real bone pain from the Neulasta shot. I'm staying on Claritin and Aleve to try to ward that off.
The_roadsho, welcome and we wish you the best. With an Onco score of 44, yes, I'd agree the decision was made for you. At least when things get tough, you will have no reason to look back and wonder if you made the right one.
GeorgiaMom, thanks for the encouragement and prayers! We too will get through this!
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GailAnn, thanks. I was thinking I was the only one.
Roadshow, I'm originally from uk. Keep us posted on the cold caps. A woman in my support group used them with great results. I'm regretting not trying them. -
Welcome Roadshow my onco score was high too it was 30 so although I was reluctant I think I made the wise choice.
lmimp I feel like I'm on the emotional roller coaster, thinking I need to talk to my dr. because this feels insane. Also having problems with my ear and jaw, they put me on antibiotics for my ear pain but I think it might be from clenching since on day 7 of antibiotics no relief from the pain. Just grateful it comes and goes so not too bad kindof feels like the pressure you get on an airplane when you need to pop your ears. Who knows so many little aches and pains I'm getting immune to them.
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melody46- You may a case of tmj from clenching your jaw at night. You may want to eat softer foods and put a warm compress on your jaw to help the pain. I have tmj and you are describing exactly how it feels when it flairs up. My dentist also suggested to take advil to help with the pain. Make sure you ask your onco if you can take advil since not all oncos will allow you to take it while on chemo. I also let the warm water run down my face when I'm in the shower. That helps a little bit too! Hope you feel better soon!!!
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Melrose it hurts in your ear like an ear ache?
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melody46- Yes, the ear pain can feel like an ear ache. I pingponged between my GP and to a dentist before it was determined that I had tmj. The dentist prescribed a nighttime mouth guard. It also turned out that I had a recently placed tooth crown that had not been properly adjusted which was causing the tmj. I switched dentists and got the crown adjusted and no more pain.
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I had tmj before chemo and neulasta Am thinking it gets aggravated by the neulasta?? Mine is much better today. Hope yours is too.
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thanks for the info I'll worry less about it now, going to try some heat and see if it helps
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Wow Im impressed that you were able to work ! The first infusion has kicked my behind. EXTREME fatique, but praise God no real nausea. Just a few little twings and that was all. Bad metallic taste in my mouth have only been able to enjoy fruit and some rice crispies. Dont want anything to do with hot food. Still pretty tingly all over I guess from the steroids. Does this stuff wear off before the next infusion? Do you have normal days? I went to the store today to get a few things and slept five hours when I got home. Does anyone else do this? I get the immune booster tomorrow and have started on the Claritin already.
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Hi all, Just found this blog. I was diagnosed with Stage 3a ILC on 12/13, 1-11 lymph nodes positive, right mastectomy, left prophylactic mastectomy, total axillary lymph node dissection 1/24/13. I am six days out of my first cycle of 4 TC treatments, originally I was to have 8 treatments over 16 weeks but my pathology was better than expected so they switched it to 4 over 12 weeks. I planned for the worst (and hoped for the best), took time off work until November. Well, I emailed my boss yesterday and asked to come back a for few days a week, Im bored! lol
I feel way better than I expected, even went out for mexican food with my family last night (margarita included). I do have the awful mouth taste, like gargling gasoline, but using the Biotene mouthwash which helps a lot. Had body aches (like a bad flu) for a few days after Neulasta shots (which is given 24 hours after chemo influsion) so im grateful for the Claritin/Aleve advice. I will try it next round. Im a very energetic 52 year old who works, works out daily in spin, and am pretty hyper (boy was THAT interesting on the Dex) My kids just laughed and my husband wanted to know if I could be on it all the time (so much got done)
I figured I wouldnt be in spin class for months but now listening to you all, I think I will try to go back (modified of course since I havent been in 2 months) this week. At least I will go to the gym and do SOMETHING.
Still waiting for the dreaded hair to fall out (with TC the onc said it is usually about day 14.... anyone have any advice on that? I have a really cute full wig and a "halo" wig to wear with hats. Since I have never been a hat person, this should be interesting.
Im surprised at the lack of nausea, I thought it would be much worse. My daughter brought me frozen yogurt (Mint chip) which was so cold and refreshing and aleviates the taste in your mouth for a bit. I will have some every day.
Good luck to all and I will share updates and look forward to yours. I am on a three week cycle with the next to be March 26th. I jumped on this site to see if the treatments got worse after each, but my understanding from you all is it pretty much does not. Im also waiting to meet with the radiation oncologist next week. With the original plan it was 6-1/2 weeks of radiation after chemo, but the general surgeon said she doesnt think I need it while the oncologist thinks "its not a bad idea". Im leaning toward no, but we will see. I currently have expanders in place and getting saline injections every few weeks to "build the mound". This part (the expanders being there and the injections of fluid ) I have found to me the most uncomfortable of this whole process. But temporary so I can handle it.
I am SO lucky to have an unbelieveable community of friends and family and awesome support. My kids are adults (kinda) 18,22,24 and are very supportive and a big help (and they actually do things now without me asking...hummmm
As a side note, I did get "cording' from my axillary node dissection which is also called axillary web syndrome. I am going to PT for it but they did a Duplex scan which is a specific ultrasound looking for DVT and found that none of my veins or arteries are affected, it is more my tendons causing the problem. The interesting thing is after the diagnostic ultrasound, my arm problem was 80% better. So at my PT appointment today im requesting ultrasound "therapy". We will see if it alleviates the condition all together.
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Welcome, Milo5, and thanks for sharing. We look forward to hearing how your appointment went today!
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So far I am working, but I don't think I could if I wasn't a telecommuter working a split shift. It's ideal, in that I have time for a nap in between segments of my shift. It feels like working with a flu-bug that is kept at bay only by Ibuprofen.
I was able to go to church yesterday and have been able to go out with my hubby walking the dogs for about 15 minutes so far each day.
My first infusion was last Thursday 3/7 and my next will be 3/28
This is going to take some persveverance, but it could sure be worse.
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How is everyone doing?
I had a better day today than yesterday, but still not easy. Yesterday I had weird random sharp pains in my head, ears, throat, legs, back & hips. I have spells where my ears ring or "roar" and pulsate and hurt. Today I had a little of that but not nearly as bad. Had a bit more nausea today than previously, but still keeping food down. The nasty taste in my mouth was much worse today.
Still I was able to put in 8 hours working and go out to walk the dogs with the hubby.
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GailAnn- Did your onco give you any anti-nausea meds to take after you had chemo? I was given a prescription for Phenergan to take in the event I had nausea after I had finished taking my 3 day post chemo dose of Zofran. If you are still feeling nauseaous, you can call your onco and maybe have your meds adjusted. It's okay to call the onco any time day or night to get some help with the side effects. Just don't think you can ride the side effects out because sometimes they can get out of hand rather quickly. As for the yuck taste, your taste buds have gone on vacation for sure. You may want to write down on a daily calendar, the side effects you are experiencing so you can tell your onco/ infusion nurse how you did with this first round. Hope you feel better!!!
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Thank you Melrose. You know I have experienced very little nausea and today it was just occaisional waves of it without actually ever getting sick. If it does return or get worse, I won't hesitate to call and they did tell me I could call anytime.
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Hi GailAnn I too had sharp pains in my head that came and went. I braced myself for a wicked headache but never got one and the pains came and went so fast I didn't need pain medicine. Going in for treatment number two tomorrow morning and hoping I dont have another reaction! Also having a neulasta shot for the first time the day after. I take claritin anyway for allergies so hoping it helps I've got several months of it in my system already
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Good Morning Warriors!
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Melody46, yep, what you describe is like the pains I've had. Sharp and fleeting. Hope all goes well for you today with the second treatment. I think there's definitely something to the Claritin for the Neulasata-induced bone pain. It sure seems to be working for me.
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I wish the Claritan was working for me (for the bone pain). My MO just had to give me a heavy duty pain med. (Dilaudid). Never took more than an Extra Strenth Tylenol in my life until all this BC mess started! Now my hair hurts at the roots. Going to get a shorty, short haircut today and have my cranial prothesis styled by my beautician who is a 4 year survivor. I know the hair will be coming out any time now. Are we having FUN yet?
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Carolyn, my scalp is hurting and itching too. That just started today.
I wonder if the Claritin would have worked better for you if you'd had it in your system before the Neulasta shot. As I recall you didn't start taking it until afterward?
I've had more sharp, stabbbing random pains all over today and stomach pains and cramps. Don't know if I'll be able to work my last four hours today, but I'm glad I've been able to work as much as I have so far.
Oh yes, loads of FUN!
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Oh, and I should add that the Claritan may not deserve all the credit for the lack of bone pain. I am fortunate to be able to take NSAIDS and have been on ibuprofen or Aleve around the clock. I don't like to think about the long term effects of that, but this seems to be all about choosing the lesser of two evils.
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Hi GailAnn- I find it helpful to keep a little on my stomach during the first few days post chemo. Just little bland things like some yogurt, pudding, protein drink to ward off the nausea. I've only had fleeting nausea twice and it was when I woke up during the night on an empty stomach. I'm guessing you got some Zofran for your nausea. Don't be shy about taking it if you need it, but it does constipate. For that I take Senokot S the night I have chemo and then colace on other days to keep stools soft. Some people get diarrhea instead of constipation, but i never have.
I also experience the random stabbing, fleeting pains everywhere the first couple days post chemo, then they go away. I haven't needed neulasta, so these are likely due to the taxotere. Tylenol usually takes care of the miscellaneous aches and pains for me.
I just had my second round last Friday and was much more tired days 1-4, this time. My MO said that would be the case. I did apparently faint when I got up during the night on Sunday when got up having belly cramps. No great harm done, but I did get a couple of small cuts over my left eye. Morale to that story is to get up slowly and dangle on the side of the bed when you get up those first few post chemo days.
The worst is past you- every day you'll feel better and stronger. The 3rd week you'll feel pretty normal before your next go round.
Melody46- hope your day for round 2 went smoothly!
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I'm going for round 2 tomorrow. Also have to have the Neulsta shot on Friday. I'm hoping for minimal SE's. I have the Claritin ready this time, I hope it works.
TMM-60: I'm sorry to hear there was more fatigue with the second round. Even more sorry to hear you fainted. Thanks for the warning, I will remember to take it easy getting up.
Gail Ann: The scalp pain for me has been pretty intense. Kind of like someone has pulled my hair really hard or I've had it in a really tight pony tail for days and just let it down. My hair was fairly long so I'm not sure if the weight of it makes a difference. Even now that I still only have a thin layer, it still hurts and is sore to touch. I haven been able to wear a full wig yet because the scalp is too tender but did have luck with a halo wig and hats. I'm looking forward to that to ease off. I hope it does for you too. -
GailAnn - Yep, you are right. The Claritan was not in my system soon enough. A bit of an over sight by my MO at Texas Oncology Assoc. in Flower Mound. I know better now though. I go for T/C Chemo Round #2 on Wednesday, 03/20 and the shot on 03/21 so I will be sure to have it in my system BEFORE the infusion and will take it for 7 days after the shot. Because of many pre-existing GI problems, I cannot take NSAIDS. What is interesting though is I take Carafate for reflux disease before each meal and at bedtime and I have not had 1 day of nausea or any sign of the need to vomit. I do faithfully take Docusate Sodium (the generic Walmart form of Colace - a stool softener) and Mirilax (like Metamucil but completely dissolves in any beverage with no taste and no thickening). Again I buy the generic Walmart version for the cost-savings. I put the Mirilax in my coffee or tea each morning and take 2 of the stool softeners at bedtime. My night stand looks like a pharmacy! Having my hair cut short today did cause the scalp pain to go away for now. My beautician Alice who is also a BC survivor gave me some oil to put on my scalp too but my Sister put it in her purse and I am not sure of the name as she is asleep right now. I will let you know though. I did get 2 cute wigs also and Alice did a great jobs cutting them and making them look very natural. I am a natural brunette so I got one the color of my hair which she cut short and spikey and I stepped out with a blond short one too. I intend to see IF blondes really do have more fun! I also picked up some head scarves and a couple of berets in case the wigs get annoying.
TMM60 - sorry about your side effects, especially that fall. Thanks for the advice about getting up slowly. I hope you are OK.
And to the rest of my fellow warriors, stay safe and well and keep those tips coming as we all continue on this less than anticipated journey. I am very glad to have found all of you even though the circumstances pretty much stink!
Good night all and may tomorrow be a better day!
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OMG I feel like I have the flu too ! I have had a cold which the OC is aware of but ache all over my body tonight. Will almost be glad to go in for labs on Friday to see what is going on. So ladies....when do the SE start to subside? Im five days out from my last infusion and two days from the dreaded Neulasta. No nausea at all tonight...Praises to God !
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Hi, I hope your TC#2 went smoothly. Im on week #2 after the first infusion (on a 3 week schedule). Wondering if you noticed a difference after the 2nd infusion that you didnt the first, either better, worse or the same. My side effects were relatively mild, wondering if they are cummulative or this is what I should expect.
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@TMM60 I hope your TC#2 went smoothly after they got the reaction under control. Im on week 2 after the first infusion (on a 3 week schedule). Wondering if you noticed a difference after the 2nd infusion side effects that you didnt the first, either better, worse or the same. My side effects were relatively mild, wondering if they are cummulative or this is what I should expect. i mostly had basically just 'flu like" symptoms including mild nausea, body aches, headaches and bad taste in my mouth. Now after 8 days I feel actually "normal" for the most part.
Still waiting for the hair to go though......I heard on TC it is usually around day 14 after start of treament. Anyone have experience on "when" for them?
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All good information from everyone. I have my first treatment in the morning at 9:15. I took the steroid pills and a walmart brand claritin (cheaper) today and will take the same tomorrow. I'm hoping i feel well afterwards because I plan to go wig shopping. I have the shot on Friday.
I didn't get the steroid energy people have mentioned on other boards. Maybe they are referring to something i will get tomorrow. I do have heartburn tonight and assume its feom the pills ive taken because i normally dont have heartburn.
I should really get some sleep. 5 hours until i have to be up and ready for the trek to the cancer center with my DH. -
Milo5 - for me it seemed as they have the date almost down to an exact science. On day 13, my scalp start feeling weird (weirder) really tingly and a little more tender in spots. On day 14, hair started falling out, not in giant clumps just randomly all over the head. Day 15, there was more. When you really notice is when you wash it. Prepare yourself, it was really hard. By day 16 when I washed it, there were piles, more piles on day 17. All the while hairs were falling out all during the day. Everywhere, I had ALit of hair nd it was pretty long. I would guess the amount of hair you start with will determine how long it would go on and the amounts you will see. I cut mine on day 18 to my shoulders, next day above my shoulders and then yesterday to just below my chin, I can't bring myself to buzz it, some girls do and it gives them a sense of empowerment, I don't think I could do that, it's not for me. Today is day 21 and its really thin on top. Not really a part on top, just a bunch of scalp. I forgot to mention that there was alot of crying and an anxiety attack in there too. It was the first time through it all that I really had cried. Luckily though I have had just enough on the sides and back to wear some cute hats and still look decent. I'm holding onto it as long as I can. The scalp pain can be pretty intense though. It's so tender. My experience has been difficult. I've had the hardest time with the hair loss. I wish you luck, strength and grace to get through it and deal with it. Just being told you will lose it and trying to prepare for it, doesn't mean that it's easier when it actually starts happening. Remember though, it's only temporary (I'm still telling myself this) it won't last forever and at least you know the chemo is working which is why we are all here in the first place.
I have my 2nd treatment in 3 hrs. I couldn't sleep either. The steroids do affect me, I took klonipin (actually 2 of them) but the steroids won the battle this time,
Good luck to all - glad to have a place where we can all share our experiences, I do think it helps to get that extra support. -
I'm starting to feel nervous now. Got my first chemo session at 09:30 tomorrow. Will also be trying out the Paxman cold cap. Not sure which I'm more nervous about. What did you guys have for breakfast on the day of treatment? Is the clarityn everyone's talking about for the immune boosting shot 24 hours after chemo? The nurse told me to take 2 paracetamol and that's all. I can definitely get hold of clarityn if that will help. Anyone know why it helps? I will be injecting myself with the immune booster. Is that what you're all doing? I know it's not readily available on the NHS over here, just privately. I read a book by Professor Jane Plant which suggested drinking both apple and fennel juice and also carrot juice - about half a pint of each - after chemo which apparently helps you hold on to your hair. I shall be drinking both of these when I get home and will let you know how I get on. Apparently I've got to take conditioner in which they will apply to my hair before they put the cold cap on. Another question I have is whether anyone is taking supplements alongside their chemo treatment. My oncologist said he didn't mind what I took providing I drop everything 3 days either side of chemo. I intend to take lipospheric vitamin C, colostrum and beta glucans. Would be intested to hear what everyone else is taking in a bid to boost their immune system. So jittery today, I can't sit still. Yikes.
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Roadshow my dr told me its ok to take a once daily vitamin and it does help a little with energy and makes me feel proactive. I had 2nd infusion yesterday and had another reaction-couldn't breath well turned bright red and heart rate jumped to 112. It wasn't as bad as the first time but now I'll be doing the last two on a very slow drip. On the bright side I''m noticing not as many side effects today, no head pain and no pins and needles in the bladder. Cant wait to see what the neulasta shot is going to do since this will be my first one. I am only having a 4 mg dose because my white count is up to 13, maybe if I'm lucky I wont need one next time, we'll see. I take claritin daily anyway so I might bump up to an extra 1/2 tablet at night today and the next few days.
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I went to get my first Chemo TX today and was told by my MO that I don't need to do chemo. I was blown away to say the least. I've met with him several times. He changed my TX plan after seeing my Oncotype score from AC+T 16 weeks to TC x4. He sent me to get a port last week, I filled my prescriptions, bought a wig, started taking the steroids and received the follow up call reminding me of my appointment. It's so unacceptable to walk in today and be told out of the blue that he no longer thinks I need chemo. I went back to my BS and she opened the case files and saw where he put notes saying I was the one that wanted the chemo in the first place and he had told me I didn't need it. That never happened...how could it happen when he gave me RX to fill? I didn't sleep last night in anticipation of today. I'm exhausted.
I am meeting with a new MO tomorrow so she can review my case and offer her opinions for TX. Wish me luck in finding a competent MO. I checked her background and it looks impressive so I'm hopeful.
Everyone have a great night. This lady is heading to bed for some much needed relaxation.
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Lolalou, that is mind blowing! I can't imagine the emotional roller coaster! It's hard enough to make the decision to do chemo in the first place! Your diagnosis is very similair to mine, except that my oncotype score was 21. I hope and pray you get some good solid advice and can make a decision you feel at peace about.
The_roadsho, I am taking a multivitamin daily, 2000 units of vitamin D, calcium citrate and L-Glutamine. These are not necessarily so much to boost the immune system as they are for overall health including bone health.The L-Glutamine is an amino acid that is supposed to reduce risk and severity of neuropathy and I'm only taking the day of the infusion and following week. My oncologist is aware of everything I'm taking and has approved it all. He specifically recommended the vitamin D. He did warn against taking large dose of vitamin C which is hard on the gastrointestinal system, since chemo is hard enough on that. If you are going to be getting the Neulasta shot, I highly recommend the Claritin for the morning of the shot and a full week after. I don't think they know exactly why it helps, but I think it somehow reduces the inflammatory effect of Neulasta on the bones.
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Hi everyone, so happy to find this topic. I began my first of four tc today. So far I am feeling pretty good. I am trying to stay as positive as possible, hoping this will scare off the side effects ; ) will take Claritin in the morning, have my shot tomorrow afternoon. Focusing on staying hydrated. Wishing you all the best of luck in your journeys!
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LW122713 Thanks for the info on the hair loss process. My oncologist actually DID say that amazingly with TC it is on day 14. I had another friend who had pretty short hair that when it started to come out (flying around the car when she drove) she went in the shower and just shampooed over and over and over, scooping up the hair and putting it outside the shower until it was all gone.
I think we as women idenfity with our hair, with our cuts, colors, perms, straightening, stying, and I think it is really hard for us (I KNOW it is for me) to lose that. I also felt that until my hair goes, I dont look "sick" to the outside world. Im carrying on my life as normal. However, once you are in a bandana or scarf or wig, people look at you different. Im was worried about those pity stares. But now, im on day 10 post chemo, and I still have all my hair, I feel like im READY for that next step. It just has symbolized to me getting closer to the end.
I know there will be tears, and my BFF and my daughter are going to go with me and the woman who has cut my hair for 30 years and is a dear friend will buzz it (waiting till the "clumps" start and I was told by the wig place to have them leave 1/4 inch when they buzz as it will be much more comfortable for getting used to the wig.
I have added Claritin to my list of pre-post chemo drugs, they give me Dexamethazone for days 1-3, Compazine and Ativan for nausea (which I have only needed a few times).
Im pretty close in schedule to several of you on this thread, chemo #1 as 3/5 and chemo #2 is 3/26. Good luck to all.
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Gailann (and Everyone),
The oil that I got from my beautician Alice is called Moroccanoil Treatment. It is supposed to take the tingling and hair root pain away.
Check it out on-line at www.moroccanoil.com
The bottle also has a telephone number: 1-888-700-1817
It is made in Israel but Distributed in the US by Moroccanoil, Inc. in Los Angeles
I rubbed some into my scalp for the first time just now before bed. The instructions say to rub it into a wet or dry scalp (hair). I think tomorrow I will use it after my shower when my super short hair is still wet.
Hope it helps!
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LW122713 Let me know how your 2nd one went today.
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Lolalou - you need an MO that you can trust. I changed my MO when I went for a second opinion. They both left the chemo up to me and said it was my decision but liked the way facts were presented by the 2nd. It never hurts to "shop around" to find an MO you're comfortable with. I too have stage II a grade 2, my tumor was much smaller but it had spread to the sentinal node. My onco was 20 so we were on the fence just like you are. That's a large dose of mental anguish he paced on you to only switch it up at the very last minute. So sorry you're having to go through it.
Milo-5: The second round took much longer because I had an llergic reaction to the taxotere. They had to top call the doc and then add more steroids. I had purple discolatuons across my breasts kind of looked like bruises and purple/red splotches on my face and neck. Finally they went away and the dosing began again. It took 41/2 hours but other than that it was ok. Less burning with the cytoxan this time but I was prepared and loaded up on the ice chips. Today, just a little tired. Hope to get a full dy of work in with my halo wig/hat combination. Neulsta shot is today at 4 but have jut taken Claritin so fingers crossed on less bone pain this time.
Good luck to all today. With minimal SE's! -
Lolalou- that is just horrendous what happened to you! I'm so glad you are doing a second opinion with a different MO, hope you find her to be a much better choice.
I'm a day 7 on the second round and my head stubble from my day 14 buzz is falling out. My scalp is itchy. I gave it a good rub with Dove body wash and a washcloth in the shower this morning, but still lots of stubble left. I wish it would just fall out already! ARGH!
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Went out with my BFF (a guy who is not my husband but my best girlfriend who happens to be a guy) and had a glass of wine/appetizers and then we joined my husband at my sons baseball game..... having a great time with all our best friends, high school varsity baseball at its best, we were winning, then.... a "hunk" of hair came out.... dammit! Somehow I still hoped it wouldnt happen.
Made my excuses and came home and tried on both my wigs and, right now, I hate them!.....
Having a bit of a pity party...... shoot! Tomorrow going to the beach with five girlfriends.... then it will be better.
EVERYONE of us needs a pity party once in awhile! :-D
N
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So sorry for you. I had quite a nice pity party for myself yesterday also.
All of my hair fell out yesterday. I just cried and cried while handfuls of it washed down the drain in the shower. And wow does my head hurts like crazy even with the oil my beautician gave me to try for that purpose! Chemo #2 on Wednesday and the dreaded Nuelasta shot the next day. Cannot WAIT to see what comes next. And why didn't the stupid hair on my legs or bikini line fall out too? Will it?
I also got 2 wigs that I kinda like but did buy some hats, scarves and berets too. I hope your day at the beach is wonderful. We all know the hair will grow back but it is still shocking when it happens.
Peace, love and blessings,
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Yes, we all know it's probably going to happen but there's always that hope that it won't until it does and it can be traumatizing. It was for me, I spent several days this past week mourning the loss of it as it all fell out. I'm sorry for those of you who are just experiencing it. The scalp pain certainly doesn't help either!
I had my 2nd tx Thursday and Neulasta shot yesterday. So far so good. Just a little tired already. The steroids didnt seem as effective this time, slept like a log last night. -
Just a quick update. I liked the MO I met for 2nd opinion and have switched. She was very thorough and recommends the 4 TC TX so I will keep same regimen and start next Thursday. She was shocked by last MO and what he did.
After my appointment I went wig shopping. I loved the 2 nd one I tried on so much I wanted to come home and shave my head and start wearing it. Haha I didn't though. I've really tried to be so positive through all of this and I'm finding at times that it's harder on the people around me. My DH is very worried about watching me get sick. I keep telling him he's imagining much worse than I've read about here. I'm just ready to get going and put this behind me. -
Milo Ive been having one of those too !!!! Tired of feeling like I have the flu. Thank goodness most of the bone pain is gone now. Hair going bye bye end of the week Im sure.
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I had my first neulasta shot on Thursday and I feel so stiff and sore like the flu. I was hoping I wouldn't get it but yes I did. Does anyone know how long this tiredness and aching lasts? At least this time around I'm sleeping great!
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Melody I got mine Monday and thought I was going to die Monday night. Tuesday and Wednesday it lessened and was manageable. Thursday I had sternum and pelvic pain only, I did have to take an oxycodone cause I got so ticked off with dealing with it. Friday and today I can hardly tell its here. Now to get rid of the Chemo fatigue and Ill be good to go ! I did use the Claritin and cant imagine what it would have been like without it. The nurse did tell me that everyone is very different with it.
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So relieved to have made it through a six day work week, but exhausted too. So far I've been able to go out for a walk with my hubby and dogs every day since my first infusion. We're having beautiful weather right now. Staying home from church this moring, since I figure I'm pretty vulnerable to infection now and when I go all my friends want to hug me, which would normally be wonderful. Looking forward to a quiet restful day.
Lolalou, it sounds like things are looking up for you. I know what you mean about the people around you having a harder time on your behalf than you are having yourself. I find that's especially true of my youngest daughter who lives in Iowa and is emotional anyway because she's pregnant. I keep telling her to concentrate on taking care of herself and that baby, because I'm looking forward to coming up to welcome my sixth grandbaby next fall when all this is hopefully behind me.
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Day 10 after infusion - Woke up feeling great today. Went out to breakfast probably ate to much as I had to run back home and make a quick stop to the toilet. Should have took an Imodium
Bone pain is all gone 7 days since Neulasta. Hair is cut very short and spikey but have noticed a very few little strands letting go. Put on a cute Newsboy hat, zebra scarf and hoop earrings and went to the grocery store. I WAS NOT PREPARED for the pity smiles, people jumping out of my way, excuse me, can I get that for you, need some help out with that? This really upset me was almost in tears by the time I got back to the car. I really dont like to call attention to myself. I have tons of cute caps and scarfs but think Im going to have to get a wig. Why am I such a whiner? Someone shut me up ! I hate this Dumb Stupid Breast Cancer ! -
Oh Starynights, I haven't encountered that yet and don't think I would handle it very well either! I'm on day 11 and so far I guess I haven't gone out in public among strangers. And the hair cut you see in the avatar pic here is still holding up, but I expect to crop it super short and start wearing my hats sometime this coming week. I hadn't even thought about the pity from strangers aspect of all this.
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Starynights-I'm sure you found the receiving attention from others rather surprising and unexpected. When I was having chemo, I know that my physical appearance ( minimal head hair) startled others. However, I always graciously accepted help if I needed it whenever the help was offered to me at the grocery store or wherever. I didn't view anyone's help as pity but rather unexpected acts of kindness and consideration that I believe that one person is showing to another. You may find that you see some strangers have a startled look on their faces because they see the possibility of them being in that position and are scared. That's to be expected. Just remember that you are still beautiful no matter what. Hold that head up high and keep on living your life and doing the things you have always done. Don't hide at home; exude that self confidence that you have always had!!!!
Wishing everyone an easy time with chemo rounds this week and minimal side effects.
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Wise and gracious words, Melrose, and good advice as always!
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@ Starynights,
Sorry about your upsetting experience. Most of my hair fell out on Friday and it was quite a shock. Today however, I am resigned to the fact that it will grow back, did get 2 wigs plus some pretty hats, scarves and berets. I'm heading into T/C infusion number 2 this Wednesday and the dreaded Nuelasta shot the following day. Tell you what, I will send positive thoughts and prayers your way if you will do the same for me. And I, like you will hold my newly bald head up high and be the Warrior that all of us have become. Have a super great week all.
Peace!
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I wish you all the best. I did TCx4 last May through July. I also want to let you knwo that you will not necessarily feel anything from the neulasta. While the TC was terrible after the third infusion, I never felt anything from the neulast except the pinch in my shoulder. I did have terrible swelling of the legs and torso/breast due to the chemo and would recommend something that I did not do regularly: walk and exercise a lot, juice rather than eat and drink massive amounts of water. When I did these things I felt much better.
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Oh dear what a whiney butt I sounded like. I feel much better today. Well mostly...Made mention tonight that "I sure hope I have not passed anykind of bad genes on to my granddaughter" (too many St Jude Commercials) my daughter says....get ready for this. Its ok Momma, Im sure yours is the old lady kind of breast cancer. If she hadnt just done my dishes and folded my laundry Id have hit her !
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I start chemo on April 1st. I will be getting my port in on March 25th. Met with my oncologist yesterday to discuss treatment and left feeling so uninformed. She spent only about 6 minutes with me. Seriously WTH. Basically said because of my Oncotype DX score of 28 and grade 3 tumor I will be receiving 4 rounds of chemo (CT), which I already knew and my side effects could be thinning hair and tingling in my hands. I have been surfing the boards here and know darn well I could have more side effects than that. She said a nurse will call me to let me know exactly which medication I will be getting after they get approval from insurance company. I sure hope the nurse will answer more questions for me.
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Just figured out how to get my diagnosis and treatments to display. Let's try this again.
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Jen987- Once you are sure that you are having C/T regimen and if you want to know about the side effects that may come your way, please post your questions here or private message me. I'm more than happy to post any info and/or links to additional information on this chemo regimen I can provide you to ease your mind a little. I had 6 rounds of this chemo regimen and had minimal side effects. I did the icing of the nails (toes & fingers) but did not do the cold caps for the head hair. Yes, I did lose most of my hair and it has grown back into a short boy/pixie hair cut. I do know how you feel about feeling like you didn't get enough information.
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Jen987:
My first MO said there was a 50/50 chance I would lose my hair. My second MO which I decided to stay with said you WILL lose your hair. Same regimen, both were going with CT. You definately want someone who will give you the time of day, this isn't an easy decision.
By the way, my first MO's partner in the practice tried to blow me off too and acted as if my questions were wasting his time. In fact he so much as told me he didn't have time for my questions and I would have to make another appt. I was hurt and furious. I called him an arrogant SOB in front of his entire nursing staff and patients and also wrote a letter to the BOD.
I went for a 2nd opinion. It doesn't hurt to shop around for an MO you will be comfortable with. The relationship lasts a long time. No one wants to be made to feel like a # when you are in this situation. Best of luck to you, and hope you can find peace of mind. -
Not sure why the long post I wrote didnt go through..... but the jist of it was...... the scalp pain is killing me... anyone have any suggestions. I am waiting till Thursday to get a 1/4" buzz because Im driving my 18 year old son's varsity baseball team tomorrow to a game..... I think Im afraid of embarassing him.....
My message was to Jen987....... everyone has different reactions to the TC chemo. But this blog is the BEST for all insight of what you MIGHT experience, so to be ready, and expect the worst and hope for the best..... mine has been WAY better than I expected.
If it WASNT for this blog, I would never have know about the possible (and very real) SE of the scalp pain when it is time for the hair to go..... I would have been really scared. I LOVE my MO, but no one told me (except by "family" here on this blog) to be ready for the SE's of the hair going.
Love you guys!! : You definitely have made this journey easier for me.
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Unfortunately, I have no suggestions for the scalp pain. It is uncomfortable and aggravating. It does ease up though. Mine is still tender but not as bad as it was before most of my hair was gone. The only relief I found was in the shower, I would let the hot water pound the top of my head and for awhile, a brief while, it would ease up.
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A big amen to that Milo5. When I was first diagnosed and thought I was facing surgery followed by radiation and hormone therapy, it was enough to have several friends who'd already been through all that. Once I knew I'd be doing chemo and what drugs would be used, this thread has been a lifeline and I'm go grateful to you, Melrose, for starting it for us and sharing your experience.
Jen987, I strongly agree with what everyone else has said about shopping around for an oncologist if there's any way you can, or at least getting a second opinion. My sugeon recommended my oncologist and I went in with loads of questions and an attitude that I wasn't going to do chemo just because he said I should. I also called my insurance company in advance to ask if they would pay for a second opinion and I had determined that I would seek one if I felt the need to. As it turned out my oncologist took lots of time with me, answered all my questions very thoroughly, and has generally treated me with a lot of respect, so I didn't feel the need to consult anyone else. A breast cancer survivor girlfriend of mine told me from the beginning and kept reminding me not to rush into anything and to take my time making each decision.
Starynights, LOL, if one of my daughters said that I'd have been tempted to slap her too! But I also hope and pray that none of my daughters or granddaughters ever has to go through this. I'm trying to be very open with them all about my experience, in case they ever do though.
Milo5, you sound like a trooper. My kids are all grown up and I think it would be so much harder to have gone through this when they were busy highschoolers. If anyone comes up something to help with the scalp pain, let us know!
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@Milo5 & Everyone:
My beautician who is a 4 year BC survivor gave me a sample of an oil that really works to take away the scalp pain. It is called Moroccanoil Treatment. Check it out at www.moroccanoil.com
The bottle also lists the following telephone number: 1-888-700-1817
The product is made in Israel but distributed by Moroccanoil Inc, 16311 Ventura Blvd. Suite 1200, Los Angeles, CA.91436
And @ Jen987 - I am a newbie also who will be going for my second T/C infusion tomorrow and the Nuelasta shot the day after. My MO is wonderful and so are all of the fellow Warriors on this site. So ask away ANYTIME you have questions.
Good night All and Peace!
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Wow, since I posted a little while ago, the hair started coming out, fast! I am going to bed now sporting a crew cut.
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GailAnn and Everyone,
Sorry you are experiencing what I had too last week. The tingling and root pain really does get better!. I often just run ice cold water on my head or wet a wash cloth with ice cold water and wear it like a hat. Just an FYI. I had T/C #2 today and it went just fine. But OH NO! Tomorrow is the dreaded shot. I was told to take a Benedryl 1/2 hour before so I do not get a bad rash and massive red skin blotches again. I hope that and having the Claritan on board since Sunday helps releave the bone pain! If not my kindly MO gave me a prescirption for a pretty heavy duty pain med. We will see! Stay safe and be well! Just remember, you are loved!
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Carolyn, glad the infusion went well and hope you tolerate the Neulasta shot much better this time!
My sweet hubby buzzed my head to about 1/2'' from my scalp last night and now I'm not having too much scalp pain. I was off today so I put on one of my hats from softhats.com with dangly earrings and went out to do some shopping for shoes, clothes and groceries. It was a beautiful day out and I didn't feel self conscious at all.
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Today at work for about 5 or so minutes, I actually forgot that I had lost my hair. It's been 2 weeks since it started coming out and today, finally I didn't think about it for 5 minutes. Here's to hoping that each day it gets a little easier.
My scalp still hurts when I either put on or take off my wig. I can't wait for that to stop.
Also happy to report that its been 5 days since my 2nd round of chemo and neulasta shot and have had almost no bone pain this time. It must be the Claritin, it's my new favorite drug. -
GailAnn, thats great. I have an "appt" tomorrow to have my hair buzzed and I did buy the Moroccan Oil Treatment today (they sell it here at Dry Bar) So i will let you know if it helps me.
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I was wondering if this scalp pain is specific to TC chemo? I have several friends that have undergone chemo for and no one has ever mentioned the scalp pain, which I find peculiar. Even the oncologist and NP didnt mention it with the big book of side effects I got.
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Milo5- The scalp pain and scalp sensitivity is a common side effect of chemotherapy. The reason that your onco and the NP didn't mention it is because it is just included as part of the "hair loss side effect". Normally the hair follicles go through different phases to produce hair. When the chemotherapy affects the hair follicles, the follicles are unable to go through the final phases of growth which means the hair will not grow during chemotherapy. As i recall, my chemo gal pals who had AC + Taxol chemo regimen also experienced the scalp pain. My scalp was a little sore when my hair first started to fall out. I got some relief when I took a shower and let the warm water flow on my head. Hope the scalp pain subsides for everyone soon!!!!
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I noticed on another thread that gals were saying that massaging their scalps with things like mango butter and even stretch mark cream helped. I wonder if anything really emoilent might work as well as the Moroccan oil.
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Well Fellow Warrior Sisters, I had my Chemo #2 T/C treatment today at Texas Oncology Associates in Flower Mound and all is well at this late hour. My MO, Dr. Nguyen is a wizard! He gave me a sample of something called Caphosal that is a supersaturated calcium phosphate rinse designed to prevent the oral and esophageal mucositis and dry mouth that hit me 4 days after my first T/C treatment. I will begin using it tomorrow after the dreaded Nuelasta shot in the morning. If it works, he aslo gave me a prescription. Thank goodness for my beautiful Sister Toni who is a nurse and understands this stuff so much better that I do and ALWAYS accompanies me to these appointments.
To all of you who are seeing your doctors soon or have in the last few days, Peace, Luv and Blessings! Thank you all for being so wonderful and sharing all of the good and the bad news on this thread. It is a tremendous support system and one that I could not live without daily. Until next time, Ciao Bellas!
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I had scalp pain only for the 2 week period that my hair was actually falling out; it did not continue past this and I hope the same for all of you. Half way thru TC I did start to get white bumps on my scalp that I thought were acne at first but then noticed that they were my hair follicles "bulbs" if you will, falling out. soon thereafter my hair began to slowly, very slowly grow back.
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I had some clogged hair follicles after the hair started falling out. I used some Neutrogena TGel shampoo to help clear the bumps and also used a prescription antibotic gel on some of the areas to help prevent infection. All of that cleared up within a week. I also continued to wash my head with Aveeno Baby Conditioning Shampoo to help keep my scalp clean.
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How's everybody doing? It's been quiet on here for a few days. I'm feeling pretty good and enjoying it while I can, since my second treatment is coming up on Thursday.
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All good here. Enjoying my "well week" before hitting the chemo bar again on Friday. Had some fun shopping on Saturday and a nice family get together this afternoon. The calm before the next round. Hope everyone else is having a peaceful weekend!
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I'm 3 days out from chemo and 2 from my neulasta shot. I felt good until today. I've been taking Claritin every day since the day before chemo and I have had bad aches/pains in my legs all day. I took 2 extra strength Tylenol but no relief yet.
The good news... No nasea. I've been relaxing and just trying to ignore the sore legs. -
Lolalou, did your MO tell you not to take Ibuprofen? Of course you'll want to follow your own doc's advice. Mine told me to take Ibuprofen around the clock if I needed to. After the first week out from my first treatment I started feeling progressively better. I think getting out and walking everyday has helped me too, even when I think I don't feel like it.
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GailAnn... I have had only a tiny bit of a sensitive scalp ! Yep Im blessed and this is one side effect I havent had. Buzzed hair all the way down tonight. Boy when it started going on Day 14 it really went fast !
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GailAnn your rocking that hat !!!! I also go for my second treatment this week. Hope all goes as well as the first one did minus that bone pain from the Neulasta ! Hope I dont have to have it this time, been getting A ++ on my labs so here is hoping !
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You look great, GailAnn!
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Starynights, try Claritin for day of and three days after for Neulasta bone pain. Works great! The 24 hour kind.
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Hi all. Gail Ann - you do look great.
My third time is tomorrow. Not excited as the tooth/jaw/gum throbbing I have had since day five tapered for a couple of days and came back full blast. It's bad enough to make sleep very hard even with ambien. I've researched and lots of folks get teeth issues during chemo. I had thought it was the neulasta, but I guess not. My teeth are in good shape except for pre-existing mild tmj and slightly receding gums on a couple of teeth. I had a dentist visit and X-rays in December. All ok.
I guess we keep moving through this. I want to get through! -
Sick of Pink....I took the blasted stuff for 5 days...Dont know what it would have been like if I hadnt.
Angie
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Thanks everyone! Funny, I hated all the pink breast cancer stuff when I was diagnosed, but once the hair started going, I wanted to do anything I could to try to add some femininity to my look.
Lmimp64 I also had quite a bit of tooth and jaw pain for about the first ten days after my first treatment, but it wasn't constant and probably not as bad as what you describe.
Carolyn, we haven't heard from you in awhile. I'm wondering how you're doing since that second treatment and Neulasta shot.
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Hi all, weird week last week with the scalp pain and hair falling out. Cut my hair short myself and then had it buzzed yesterday by my friend. Scalp pain is gone, as is "most' of the hair. Wore my wig to a dinner party last night (all "family") after a 7 mile long hike. Feel great. Hanging out a home tonight with just a scarf, and feel pretty used to it.
Moroccan Oil Treatment helped a lot, as well as the buzz for scalp pain.
Chemo #2 at 9am tomorrow morning.... Im ready with my chemo "kit" of almonds, water, candy, Downton Abby season #, my hubby and friends coming and going.... then im 1/2 way there... :0
Yeah!
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Great Chemo kit, Milo5! I love Downton Abbey too!
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Wow, Milo5, a 7 mile hike?! You're inspiring! Hope all goes well for you today.
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Fellow Warriors - this is the toughest week I have ever had after Chemo #2. I have barely been able to log on to my computer, let alone comment or be a part of this wonderful commuity. I continue to positive and pray for us all. If you are celebrating Passover - Enjoy! Those awaiting Easter, I hope the biggest chocolate Bunny ever shows up in your basket! I hope you all are safe and well with Peace, Love and Blessings.
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cmbernardi I had my 2nd on the 13th and it really has kicked my butt. I am really tired and just getting a couple of things done a day is a huge accomplishment. I also have muscle weakness and joint pain but had the neulasta for the first time after last treatment. On the bright side I didn't have alot of the SE I had last time. I get frustrated because I have no get up and go but then I realize I just have to be patient this too will pass. If your like me having 4 treatments we are half way there!
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Carolyn & Melody46, so sorry to hear you've both had such a hard time with the 2nd treatment. Melody, remembering that you're halfway through is a great way to think positively. I will be praying for you both. I have my 2nd treatment this Thursday, but I'm supposed to have 6 total.
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I go for round 3 next week. I will be 1/2 way though at that point. I can't wait to feel that excitement, that I'm on the downhill slide. I am soo ready to be through it as I know all of us are. I think the span between the first and 2nd treatments were the hardest for me. It was all new, had no idea what to expect and then to top it all off, the hair started falling out. I feel like just being able to get though all that was amazing. I felt empowered the last couple of weeks at how difficult it was but still made it through to the other side. Am I ok with it all now? NO still mad that I got stuck with cancer and am even having to do chemo followed by 33 rounds of radiation and 10 yrs of estrogen therapy and that I look like I'm sick unless I cover my head. I'm still pissed at all of that but at this point, I look at this as a challenge now and I am ready to take it on, and I'm going to win!
We are all strong! Hope everyone feels better and has very minimal SE's! -
CMBERNARDI ..... Im so sorry your having a bad time. I have my second on Friday and Ill be going alone. My chemo partner, my daughter has two very sick children at home and cant stay with me. That alone makes me very anxious. She will be taking me and picking me up though. I pray you feel better soon and hope this doesnt kick my butt !!!!
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Such a weird thing going on. Had first infusion on 3/8 had some SE but after 9 days I was good to go and have felt great... Yesterday I started getting what I call "chemo stomach". That queasy, icky feeling, smells bothering me again. Cant think of anything Ive eaten that would have caused it. Has anyone else had this? Or is this my nerves about upcoming treatment on Friday?
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Gosh, sometimes I think I post something and then it doesnt show up.
Starrynights. I too had the same reaction. 1st infusion was 3/5, had some minimal SEs then fine for last two weeks, this week was my "week three" or week off before my 2nd infusion and I also had queasy stomach and yucky mouth again.
Infusion #2 went well yesterday with the exception at the end of the bag of Cytoxan I had some coughing and throat tightening so they stopped and gave me a bag of Benedryl, then started the Taxotere and all was fine. Feeling great today, even had a glass of wine with a friend last night. Heading to neulasta shot soon but thanks to you all have taken my Claritin, the meeting a friend for lunch and then my son's baseball game (the Dex is working well, cant you tell) Expect to feel pretty wiped this weekend so made no dance party plans.
Hope you all have a great week!
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Starynights I haven't had the queasy feeling but something I do have after the 2nd round on the 13th is weird pains in my stomach. They said this was going to be hard on the gi system but this is so strange and I have that ungodly smell/taste in my mouth. Good luck on Friday wishing you minimal SE. I too have someone go with me to every treatment I am lucky to have my step dad who was previously an onco nurse. I hope the nurses are kind where you go and if your too anxious request some ativan they are happy to give it and I get it everytime. On a differant note the last two treatments I've had a reaction to taxotere hard to breathe, turn beet red and heart flutters; not comfy. They come running in with benadryl and more steroids and slow the drip down. This time around he's got me taking 5 tablets of dex at 12 hours prior and again 6 hours prior to treatment. So 40 mg prior to treatment if that doesn't make me feel like speedy gonzales I dont know what would. I think this sounds a little harsh.
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Holy Cow, 5 tablets of Dex would put me through the roof. Good luck with that. Yikes!
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My new "do" I got a halo wig (along with a full wig) that is cute and sassy and lots of fun hats. I have NEVER been a hat wearer so this little adventure takes on a life of its own right now. My husband loves the "sporty" look and the Halo wig (which is only a 1/2 wig) is so easy and comfortable and I just literally get out of the 5 minute shower, throw it on with a hat an go. LOVE IT!
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Saw a different doc at my pre-chemo visit today. She suggested I take a B-Complex vitamin for the PN. For the past 2 rounds, I've gotten tingling fingers and toes and around my mouth for all of week 2, then it goes away. My usual MO was kind of unimpressed about taking B vitamins, but the one I saw today is of the opinion that although there is no research to demonstrate its effectiveness, it can't hurt. So, I started it today. Will let you all know if the PN is better this round. I'm off to the chemo bar on Friday for round 3. I fully expect to be even more fatigued this time since that is cumulative. What other wonders await? I hope no new SEs. From what I've read on all the boards, everyone gets it figured out just in time for it to be over
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Milo, I meant to ask- are you wearing the halo wig with a hat in your avatar pic? It's totally cute whether that's your real hair or halo!
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Hi I started chemo on March 18....I am doing 4 cycles of ac and then taxol for 4 cycles. I think the plan is see what happens then surgery maybe more chemo if necessary and then radiation.
The magic mouthwash has different concoctions.....I had them make it with 1 part benadryl (diphenhydramine, 1 part viscous lidocaine, 1 part maalox and 1 part nystatin) I think it helped. Also the nutrasol seems to help as well. Also inbetween biotene.
Rachel
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Hello all! Tomorrow is my second infusion. Had my DH bring home fajitas with all the fixings from Taco Cabana tonight while my taste buds are working.
Milo5, you look great!
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Good luck tomorrow GailAnn. Of course we are always in each other's pockets!
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To TMM60, Yes that is my halo wig (all my hair is gone) and it was only $49 at the wig store (synthetic of course but NO one could tell it was a wig. The top is open so its really light and airy and I can wear any style hat with it (but you do have to wear a hat)
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And thanks GailAnn. You are about 2 days behind me in schedule. My 2nd went fine and I still feel great today, got the Neulasta this morning, but know that the weekend might be different.
Good luck and let us know how you do. Hopefully no strange SEs
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Hello! I just joined this site today and really appreciate the support! I had my first chemo infusion (taxotere and cytoxan) on March 21st, with a neulasta shot on the 22nd. This was the first of four infusions, one every 21 days. So far the worst part has been the bone pain from the neulasta, but I've had a little nausea and diarrhea as well. Compozine really helps the nausea, but makes me really sleepy, which didn't go well at work. I'm grateful I only have to have four infusions, so should be all finished by the end of May. It's nice to hear from others out there going through the same thing at the same time!
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Milo, you look great. Love the hat and halo.
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melody, milo and starynights- I am also feeling uncharacteristically tired and some mild GI upset yesterday and today. This is my week 3 post tx and am going for round 3 tomorrow. This is when I should be feeling really good, but it feels like the first few days post tx. Not sure what's up with that?!
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Hello ladies, my dear friend just started cytoxan/docetaxal (taxotere) this week and I referred her to this thread. I will be following you and rooting for all of you beautiful, beautiful women - I have tears in my eyes as I write this because you are so incredibly strong and beautiful. BRAVA !
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I had my second infusion today and got home about 3 hours ago. So far so good. I was relieved that I didn't experience the allergic reaction some of you have with the 2nd treatment. I had already started the Claritin, so I don't know if that helped. I used the frozen gel mitts and slippers that the treatment center provides again this time. I took a tip from Melrose and cut the fingertips out of some old knit gloves so my fingernails would get the full benefit.
When I described the sharp, stabbing pains I had in my head and elsewhere after the last treatment, my MO said they were caused by the effect of the Taxotere on the nerves (neuralgia) and he prescribed something called Metanx. It turned out to be pretty expensive even with insurance. I found a coupon online too late, but if this stuff helps, I'll use it for my refill. It seems like it's mainly used for diabetic neuralgia and neuropathy. It's B-complex vitamins in a form that is supposed to be easier to metabolize.
My MO also recommended Alpha-Lipoic acid, an over the counter supplement. I had a few work days last time when those stabbing pains in my head made it very hard to focus, so I'm hoping that won't be so bad this time.
I'm not scheduled to work today, so I didn't need to use sick time (my schedule varies.) I went out with my DH and the 3 doggies for our walk after we got home.
Tomorrow, Neulasta. Hoping for the best again this time and hope all is well with all of you dear sisters.
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And Shellshine, hope to see your friend here. You sound like a wonderful friend!
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Welcome Auraline, this really is a wonderful group of women going through the same thing at the same time... read back a few pages for info on scalp pain (Morrocaan Oil Treatment worked for me and others) and info on Claritin before Neulasta. I just had my second treatment 2 days ago and feel pretty good, just a little sore throat and achy. Been running around like normal today so not too tired, yet, but didnt make any plans for the weekend.
Good luck and ask away with questions.
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Hi ladies! I started my chemo Feb. 6, & I'm in it for a total of 6 tx with one every 3 weeks. I am 43, have 3 kids, & work full time as an RN on an OB unit. I just want those of you who are just getting started to know that even though everyone has different SE & reactions that this regimen is pretty do-able. I had my 3rd tx last Wednesday. I'd have to say right now the worst part is the fatigue I'm getting. It started about a week before my last tx. I get generally achy on the Fri, Sat, Sun after my Neulasta, but even that isn't disabling. I haven't had to miss any work so far other than the day I get my tx. Stay on these boards, listen to Melrosemelrose because she is a fountain of knowledge, ask lots if questions, & don't be afraid to vent on here! Nobody knows better what you are feeling than the rest of us!
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Wishing everyone here a wonderful weekend with your families. I hope all of you are feeling well enough after your chemo rounds. As each of you is discovering, you are past the words of "I can do this". You are now doing this this and doing it well!!!! With each round, I know you feel a little more tired, a little more fatigued and a little more winded. I know it feels like you can't take one more step or climb another step and you feel like you aged a lot. Just keep hydrated and continue eating healthy, resting as often as you can and make sure you get out for a walk or exercise. Don't lose sight of the goal of celebration you will have when you finish the chemo. If you find yourself crying more no apparent reason, try to remember it is the chemo causing the tears since it has affected your hormones and that sometimes you just need to cry. It is perfectly fine to cry. I remember crying right after I had just eaten dinner on night. I cried like a little kid because the dinner that I had cooked didn't taste very good. Of course, I knew how silly this was and I even laughed at myself through my tears. I also recall crying for no real reason and would tell my husband that I was just fine and just needed to let out some tears. I look back at where I was over a year ago when I got diagnosed and I am amazed at how far I have come. Having a positive attitude and being determined to see myself through this are two of the many things that have helped me and continue to help me. It was my goal to not just merely survive my time in treatment but to thrive. I'm here with you every step of the way and await the day that you each finish your time in chemoland. Just remember that you are not alone on this quest to get healthy and stay healthy.
Sending lots of (((HUGS))) and positive calming and healing prayers, thoughts and energy!!!!! As always, looking for a little peace and a little calm and lots of good conversation, laughter and smiles and moving forward.....
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Happy Holidays to everyone!
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Happy Easter lafies!
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Milo
its so weird isnt it ? Had the second treatment at 11am today and have done well. They even cut my benadryl in half,which scared me to death because I had no reactions the first time. LEAVE IT ALONE if it worked !!! They did the cytoxan slowly, so no problems. I do notice that the steroids are really doing a number on me. I came home and laid down for an hour got up and did the four loads of wash that have been sitting for a week. I will be sooooooo happy if I have no more than Im having today other than the steroid crash in a day or so...lol Im sorry you had the problems with the throat. That has to be really frightening ! Still have that weird taste...Ive been munching on red liquorice and it seems to help.
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Some of you might remember the crippling pain I mentioned (I think on this board) that I had from the Neulasta even with the Claritin. I talked to my oncologist today and asked if my blood counts were good enough that I could skip it this time. He said absolutely ! Your bloodwork is fabulous. Have labs every Friday so if it doesnt look good will revisit getting it. For now Ive been granted a reprieve.
So...why would he have not mentioned that my numbers were good, and told me before I asked that I didnt need that shot from Hell ? I do LUV him by the way. Also gave me an RX for a Z pac as my entire family and I have bad colds.. Told him I have a tendancy to get sinus infections and we dont want that to happen. Think these steroids have me rambling a bit.
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Milo you are a cutie patootie for sure in that hat !
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I hate to say this.....I know its very real. Do you think our minds are making our bodies do this??? I wasnt expecting it for sure.
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No, Starynights, in this case I think the chemo drugs are doing a number on our bodies and our minds! I'm old enough to remember the old Twilight Zone TV show, and I've been referring to this experience as the Chemo Zone. Have you seen the Lord of the Rings movies? I also think of the scenes where Frodo has the ring on his finger as the visual for how chemo makes me feel - like I'm not quite in the land of the living. I'm glad you were able to skip the Neulasta shot this time. I had mine today, but I didn't have problems with it last time and doing ok so far.
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Milo I love your halo. I know you got it at a wig store. Do you know the name of the wig! I'd love to order one online.
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Hi all, hoping everyone is having a great holiday weekend. I had round 3 yesterday and other than super tired, I'm feeling pretty good. I've even been able to sleep despite the steroids. Puffy red face, but no steroid moodiness. My DH will appreciate that! They added benadryl to my premed yesterday and started the taxtotere slowly and no reaction this time. Hooray!
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TMM60 Yay on no reaction, I've had pretty bad ones the first two times and have my 3rd coming up on Wed. They are having me take 20mg of steroids at 12 and 6 hours pretreatment and going to give me the slow drip. I am praying to god I dont have another reaction. Happy Easter everyone.
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Here's to hoping no reaction for you!
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I am so happy everyone seems to be fairing better......my second chemo is Monday and then the dreaded Neulasta. Happy Easter and Passover1
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Neuropathy. I think I've finally figured out my throbbing, about to have a cavity filled mouth. I have numbness and tingling ipon left side of face, neck, and back of left leg and inside of left arm.
Round 1 was jaw, 2 was jaw and face/neck and this round added leg and arm. I am 5 days out. Anyone else having this? I was also an emotional basket case day 3 and 4.
My mo mentioned gabapentin. I didn't take the script after I read about the drug. Scary. Anyone got a recommendation or experience with this.
Thanks. I'm hitting a low here. -
Lmimp64 I haven't heard of that drug but I haven't experienced any neuropathy either. But I experience a little "basket case" the first week out of chemo. Others have told me this can be a SE of the steroids.
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Lmimp64, this sounds similar to what I experienced after my first infusion. I had it in my jaw and teeth but more in my head. My MO says it is neuropathy / neuralgia caused by the effect of the Taxotere on the nerves. He prescribed Metanx for me, but the prescription was very expensive, so I think I'm going to ration it and try to make it last. I plan to try using it for the first 6 days after each treatment - I have 4 linfusions to go after this one I just had. Metanx is a Vitamin B12 that is supposed to be easire to metabolize and is similar to the injection in how it works. He also recommended Alpha Lipoic Acid 2000 - 3000 mg twice a day. I got that at CVS pharmacy over the counter.
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I've read on other chemo threads that some take 30 grams L-Glutamine powder (10 grams X 3 times a day) that can be added to any fluids you drink and also 100 mg of B-6 to help with the neuropathy. At one time, Acetyl L-Carnitine was also suggested; however some have stated on the threads that this supplement may actually make the neuropathy worse. Check with your onco before taking any of these supplements. Fortunately, I experienced minimal neuropathy in my feet and hands which subsided after I finished chemo. I did not take any of these supplements while I was having chemo. My fingers and thumbs used to get cramp and get stuck in one position. I usually just moved the fingers/thumb with my other hand to get things uncramped and moving again.
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Thank you so much. I will ask about the supplements and Metanx. I didn't know you could get neuropathy in your face/teeth. Thank you for your help. This one combined with finding out have to redo recon has been a mess emotionally. I so appreciate you making me feel not alone.
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So far so good for me from yesterdays infusion. No nausea at all, no aches. They cut my benadryl in half and I am still so wired from the steroids on Saturday night I cant sleep. Had a huge argument with my daughter and son in law today that Im blaming on the steroid moodiness... Mouth is raw, brain is scrambled and going ninety to nothing. I know when I crash its going to be hard. I just hope the week doesnt bring any more side effects. Hope you continue to do well.
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Starynights - inspirational move. I will skip my Nuelasta "Nasty" shot on my upcoming third T/C tx. and just keep labs well-monitored. It saves about $4000 per episode if the shot can be successfully declined. Overwhelmingly GREAT idea and decision too BTW. Happy Happy, and Peace and Luv and Hugs
Happy Easter and a Blessed Sunday to ALL!
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Hello to all. I am 9 days out from first infusion. (4X CT every 3 weeks) I don't take neulasta, what is that? I do take the Dexa the day before, the day of and the day after infusion. I have felt tired and fatigued throughout, though I do have a great support system/network that help. Spiked a temp yesterday but it lowered right away and has stayed down. SEs have been: rash, pimples, cold sores on face, head, back of neck and now dry skin on hand that looks like a rash developing. I am continuing to drink as much water as I can. Thank you all for posting!
not sure how to get my stats to show up...
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btdemo- Welcome!!! If you go to your profile page, you can put your stats in there. The Neulasta shot is to help boost your bone marrow so it will keep producing plenty of white blood cells during chemo. The white cells are the infection fighting cells. Your onco may want to wait until after it is shown that you need a Neulasta shot after a round of chemo. The shot is expensive and insurance companies don't always want to approve the payment for them. Hope you are feeling better. Make sure you let your onco know of your side effects at your next infusion-- temperature spike and rashes. If you have a calendar handy, you may want to write down your side effects/temperature so you can keep track of it. Again.... welcome.....
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Ok, thank you Melrosemelrose, think I got the profile figured out. Will talk to my onco about the rashes and temps. Not sure if this will happen after each infusion or not. (hope not).
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I am also taking L-Glutamine powder - about 15 mg twice a day dissolved in juice. My oncologist didn't proactively recommend it, but when I asked him about it, he said it was fine. He had no objection.
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Oh Starynights, so sorry to hear about the arguement with your daughter and son-in-law. None of us need relationonal stress on top of everything else. Hope those fences are mended or will be soon.
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Hello Friends
Hope everyone is playing the fool today - or pranking someone, April fool style that is!
If I had even a tiny bit of energy, I'd be doing some hilarious stuff. But after a busy weekend I am totally wiped out today and feeling that my legs and body are just lead. Hard to walk upstairs, hard to do any light exercise, too tired to even eat. Of course I am drinking lot of fluids around the clock and shuffling along to the bathroom frequently. I bought some organic Agave juice and have been sipping on it over ice and hoping that its miracle properties are just about to hit. My sweet Sister just ran my taxes off to the post office and I am resigned to keeping my swollen legs and feet elevated and continuing with MY April Fool's pity party. I though this would be a higher energy week as I last had 2nd tx of chemo and shot 12 days ago but with just 9 days to go before the next, I am really not sure. What say my fellow Warriors?
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cmbernardi- HANG IN THERE, SISTER!!!!!! As you are discovering, the side effects are cumulative which translates to you will notice that you are moving just a little bit slower after each round of chemo and it takes just a little bit longer to recover after each round. I know how you are feeling and how much you want to feel better. Try to eat some food; you need that nutrition for energy and to help your body recover from the latest chemo. I know everything tastes blah and like cardboard. Keep that positive attitude of yours going--- I see it there!!!! Make sure you tell your onco about the the swelling in the legs and feet-- it is a side effect but it still needs to be monitered. Sending you lots of (((HUGS)))!!!!!
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I am also experiencing what you and several others have: that the fatigue has hit so much harder and quicker after the 2nd treatment than the first. I've spent most of today so far lying around in bed. Even sitting in the recliner seems to take too much effort. I hadn't missed any work yet, but I'm missing today. I hope I bounce back quicker than you have Carolyn - Yikes! And I hope you have at least a few good days before your next treatment. I do remember Monday and Tuesday being my worst days after my first Thursday infusion, but this is so much worse.
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I was told to switch from Clariton to zyrtek to see if it will help with the side effects from Neulasta.
I had the jaw pain the first week....but I used to get it with my RA. If you keep getting it try a night guard it will help. If you are clenching from pain that may contribute to the symptoms.
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Had my first infusion today and forgot to ask the nurse, are the anti-nausea medications you get from the infusion enough for the first day or should I be taking the Zofran and Compazine pills too? I want to keep the nausea at bay.
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cmbernardi & Gailann I too have had an awful time with fatigue after #2 on March 20, I didn't start feeling better until last Friday (by better I mean able to function) now I'm going in for #3 on Wed and I'm dreading the leg and joint pain but especially the spaced out brain and fatigue! Jen987 The iv meds i get for nausea during treatment have been enough for me but if you feel even a little nausea take something right away to stay on top of it.
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Jen987- I took Zofran for 3 days starting the day after I had a chemo round. I also had Phenergan as a back up in case I felt nauseous. However, I never needed to take the Phenergan. If you aren't sure what you should take tonight, call your onco. There should be an onco on-call to answer your questions so don't be afraid to call. Just remember, it is the onco's job to help you get through treatment. Keep drinking the fluids to help flush the chemo through your body. When you determine when you are supposed to take the post-chemo anti-nausea drugs, make sure you take them with food. Those drugs have a tendency to make one nauseous if taken on an empty tummy. Wishing you the best.....
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Jen987, the IV anti-nausea drugs seem to have worked very well for me for my first two infusions. I've also taken ginger capsules as needed, but haven't need any prescription for nausea. Ginger ale with a couple saltine crackers has also worked well for the occaisional mild nausea I've had.
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Thanks ladies. I've drank so much water today I feel like I'm gonna float away. Good thing I love water. I've learned so much from all of you these past couple of weeks. I don't know what I would have done without all this knowledge I've obtained.
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Jen987: my first treatment was on a Thursday and the nurse said that the nauseau meds that were given in the IV would wear off Saturday evening. She was right, and I had to take the RX that my MO had written. With the 2nd treatment, I didn't have any nauseau.
I go for # 3 on Thursday. I'm hoping its not too rough this time. I'm already exhausted. I can't believe how tired I am. Maybe it's the time change? -
Jen987 if the water starts to taste funny in the next few days, you might try adding a lime or lemon wedge to each glass. That has helped me when I started getting the off taste in my mouth.
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GailAnn... I have been hit hard after the steroids wore off with SE. EXTREME fatique, ache all over, headache, diarrhea, raw mouth you name it. Girl you must be superwoman...I have no idea how you have worked through this. Im down almost a week before I can go back to taking care of my grandkids. BUT two down two to go and Ill be done. Only thing that keeps me going.
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Hi >I wrote when I first found out I was triple HER 2 negative and getting all different info from 4 different mo....even though i had a small tumor (1.2), no nodal involvement and clear margins. I opted for tc and cold cap therapy. The adventure ( one treatment down, second one tomorrow... Then I'm HALFWAY there !! ) has so far been an adventure .
i am grateful for my "team"...daughters, staff and fabulous girlfriend who are making this such an event and adventure. It truly does "take a village"
The chemo day one was so chaotic, distracting and other worldly with the cold cap activities thatwent in through the infusions, we were all hysterically laughing most of the day.. 50 min pre-meds, two hrs chemo , one hour infused hydration and then the highway race home ( trying not to get stopped for speeding in the two cars) so we could get the next cap on before 30 minutes passed... Then four more hours of cold caps changed for proper coldness every 30 min..it was an incredible day...friends cooked.. family, EX husband iced and strapped on the "hats"..it was a party from another planet and now, until I'm reminded again when i start tomorrow and we try to replicate the first session exactly, it was all good ...now how likely is that to get reproduced..hair is shedding a little but spirits are great
Taxotare - I did have terrible stomach cramps either from the dexamethesone or th e taxotere ; or maybe I caught a stomach bug and that wasNot fun. I have grown up with canker sores so a few of them wasn't a complete surprise...but the Angelique Jolie LIPS were a painful,and a very disruptive addition..A frightening and painful event and NOT remotely the fully thoughtful, sexy addition they should have been to wretched those canker sores! Not at all what i thought I'd look like with Botoxed lips .... How delusional am I. That's off the bucket list for
The good news..well not ALL good nrews......... No nausea and I wonder if the cold caps helped with that. I DID faint the fifth day after chemo... Was in the bathroom and woke up staring at the ceiling with the cold tiles cooling my body down two rooms away from where i thought I was ...and flat on my back in the kitchen....no idea how I got there... Doc said maybe low potassium and low electrolytes... Maybe too much water.. Hoping that doesn't happen again ..bananas and gatorade maybe.
Several things have helped enormously ( let's hope it holds true this next time!! And helps some one there in this glorious comminity . If anyone else has fainted please let me know what you might have figured out. Thanks
My guiding formula
1. Hydration 64 to 80 oz of water everyday... From Now on I'll mix that with Gatorade for the electrolytes and have a banana for potassium ...send ideas if you have them
2. 48 oz green tea or ginger tea and before bed relaxation tea
3. I make myself stretch and do push ups and planks in th am and walk then for at least 20 min. Then when I don't feel like it later ...it's already done so im guilt free,. Most days I force myself later to walk 3 miles... Or an hour which ever comes first.....Often i have to con a friend into coming so i'll actually follow through ( not that virtuous in the snow and the rain)
4. Got a slow juicer and spend a lot of "down" time staring at the juicer slowly sucking down everything raw in my fridge. It's become my new meditation...or is that..addiction.? ..that and watching cut flowers live to their fullest in front of my peaceful eyes
5. I get up and go to work everyday for at least 6 hours ( my own biz and my daughters run it with me so suddenly no one cares that I'm there )... But I care and need the interaction, the phone, the excitement of customers and of being interactive and doing it somewhere away from home. Really makes a difference to me
6. i just started piano lessons..one finger at a time and I .can't play a thing but it's something to go to each week (before the brain goes) no matter how bad i am and it gives me something to do when the village has all gone home and left me alone with my thoughts
Good luck to everyone finding their own path . Please share... Move, drink water, laugh a lot. .. Just think: we KNOW what's going on inside ourselves and our bodies. In a way that makes us the lucky ones. .. We're on it full steam ahead. Yay for all our reading about it, acting on it, questioning it and for being brave. Love, indi. (I do take bit b complex. Co q ten, and a good probiotic
I' m a little on the high side age wise. .. 68 and feeling great hope the next three aren't cumulative
xo to you all. Indi
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One suggestion, remember to take probiotics during chemo to keep your flora balanced in your intestines and to ward off vaginal yeast infections. My OBGYN told me to take them after I ended up with a roaring yeast infection. I wish I had been told before starting chemo.
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Hello again,
I drink my probiotics everyday in the form of Kefir a milk-like beverage that comes in lots of goOd flavors but is 99% lactose-free. I buy Lifeway Kefir at Sprouts here in North TX. Check them out on-line for coupons. HAPPY DAY EVERYONE.
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Starynights, before you get too impressed with me, remember, I am a telecommuter, so I work from home. Don't think I'd be able to do it if I had to get dressed up and drive in. And using a public restroom right now? No way! So sorry you're having such a hard time this go round.
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I'm on day 4 post round 3. I can't believe the level of the weaknesses and fatigue this time. After I got past the steroid wiredness over the weekend, I've been pretty much on the couch or sleeping. I hate it since the weather is getting nice here in Pennsylvania and I can't even rally for a walk this week. Ah well, I know its temporary, but frustrating.
I do think my hair is making a comeback. I cut it short the day after my first treatment, and then shaved it off when it started coming out by the fist full on day 14 after the first treatment. Since then, I had some sharp stubble come back, which I shaved back again. But now, it seems to be coming in mostly evenly all over my head and is softer in texture. I think I will let it go for awhile and see what happens. Brows and lashes are thin, but still there.
Nails still look good and are growing. Hope it stays that way.
Indij1- yes, I fainted on the way to the bathroom one night. Be sure to get up slowly and dangle on the side of the bed before you get up if you can remind yourself to do it. Sorry that happened to you, I know it can be unnerving!
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Yes the steroid crash was horrible for me after round 1 and especially with all the side effects from the Neulasta. I just had 2nd chemo on Mon and neulasta today...I am working and don't want to have to leave early again this friday. Its bad enough I can't work days 7-11(the days I felt better). Oh well. My hair started to really clump worse than the day before in the shower that I had to run out and try to find a place to shave my head...it was gross. I hope everyone feels better!!! Whats worse the fatigue or nausea.....I say both can't figure it out.
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Has anyone had what feels like ovarian pain? I'm having sharp, stabbing pains low on one side about where the ovary should be. I had some of this last time, but it woke me up and is keeping me awake tonight. Otherwise I haven't had nearly as much trouble with the sharp stabbing nerve pain as I had last time.
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Hello Newbies,
I'm sorry that you are all here but with faith in God and all these ladies helping each other, you will get through this.
I was in your shoes one year ago this week taking the Cytoxan and Taxotere x 4 without a port. My veins did fine. My hair fell out 20 days later, but it's come back.
Every day, from the beginning of my diagnosis I spent literally hours reading the posts here online of all the women who have gone through breast cancer before me. Their posts of the details of their fears, faith, treatments, setbacks, real life questions, answers, helpful advice, humor, and pure sisterhood helped me get through my cancer, chemo and beyond.
My diagnosis, IDC grade1, 3cm, stage 2, ER+, PR+, Her-2- is a lot like some of yours. I had a skin sparing (lost my left nipple due to my cancer) mastectomy of my left breast.
Sentinel lymph node biopsy showed less than 200 cells were counted in the one lymph node out of five lymph nodes removed. My Dr suggested, and I decided, not to do a total axial lymph node biopsy of my left arm.
Current thinking is that if chemo is taken, a total axial biopsy is not needed. I guess we will see. I am 62 years old, right in the target age of many women diagnosed with bc but through this site see that it does affect women of all ages.
My PS placed a TE (tissue expander) in place of my left breast right after I had my mastectomy. It felt good to have "something" there afterwards. After my chemo was completed I started taking Femara. Six weeks of saline fills to expand my TE made me feel balanced but it also felt like I had a hockey puck in my breast.
Four months later my Plastic Surgeon placed a 535 Mentor gel implant in my left breast replacing the TE and did a breast lift and placed a Mentor 150 gel implant in my natural breast using a "lolly pop and anchor" incision. A large hematoma developed after my surgery on my natural right, lifted breast so I went right back into surgery the next day to have it successfully removed.
My reconstruction healed so slowly that my PS was concerned. I was on antibiotics for the whole month with not much healing. My oncologist had mentioned to me right after my diagnosis that she thought that I should stop taking any aromitase inhibitor a few days before and even for a little while afterwards during my breast reconstruction because these drugs might prevent the body from healing.
Once I finally remembered that, I consulted my doctors and stopped taking the Femara for two weeks. My breasts healed very quickly after that. I don't know if that was the reason I wasn't healing but my PS was impressed.
My hair came in black (!) just before Christmas so I was able to leave the house without my carefree Raquel Welch wigs, which I really loved because they were light, east to wash and wear and very natural looking. We live in Florida and I wore a wig to play tennis in the summer months under my visor. My natural hair is brown so I dyed it light brown.
After Christmas I had a dull pain in my left ribs that lasted a few weeks so my Oncologist sent me for a full bone scan that came back negative, Thank God!
My breasts have pink scars that are slowly lightening. I use cocoa butter on them because I don't trust any lotions on my breasts with a lot of ingredients. It softens my scars. My PS did a great job of matching my implanted breast with my lifted breast and gave me the same approximate 36C I've always worn. I'm wearing underwire bras that are comfortable.
The Femara makes me tired and thirsty with some aches and pains that could be just my arthritis. Compared with the side effects I have been reading about, this is all good. I started with the name brand Femara because my onc ordered it and my ins paid for it last year. I'm still on it, but paying for it myself at just under $500 a month (that includes my ins coverage) but I will have to get the generic Femara next month.
The CVS pharmacist told me that most of the "side effects" reported are from taking generic meds made with "fillers" used to mold the pills together. He told me that "currently there are no restrictions or FDA approval needed for the use of any fillers". My gyn tells me the TEVA brand from Israel is a good one. I'm hoping she is right.
So, like all of you, I'm reading all I can, laughing and crying at all of the posts that share the grief we are all going through. Keep posting and sharing ladies! Sometimes hope is all we have and are glad to have it. I am a survivor who hopes to have years ahead of her. If not, I live each day fully (hopefully) not looking over my shoulder.
Please private message me if you have any questions or comments. I hope I haven't written anything that would offend anybody. This is just my experience.
Hugs,
Mimi8 -
Thanks for sharing Mimi8- really nice to hear from a survivor who has made it through treatment!
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You are welcome
I was born and raised in Pittsburgh, Pennsylvania and have lots of family still there. What part are you from?
Mimi8 -
It is encouraging MIMi to hear froma survivor....sorry you still have to deal with the SE.
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GailAnne....I have that low stabbing pain...kind wrote mine off the the IBS. Dont know..
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Have had every SE known to man this time infusion #2....rash at injection site, rash on my hand, oh heck yada yada yada and on it goes. Too tired to type them all. Bet a bunch of you all are in the same boat tonight !
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Gail Ann
Could you be ovulating or possibly have an ovarian cyst? I have had it in the past before the breast cancer stuff. Severe pain can be a rupture of a cyst. Call the doctor.
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I just reread your post GailAnn did you have your ovaries removed? If so sorry for the above post. I am very tired so I may have read out of context or missed something
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Yes, Mimi8, thanks for sharing your story!
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Hi All:
I just got back from 3 days in hospital due to low white count and temp over 101. I was 9 days out from first infustion. I haven't taken Neulasta but have been told that will probably be added to my regimen. From the posts here it sounds like there will be bone pain. What types of meds are available to lessen that type of pain?
Have any of you telecomuters been able to work thru it? I am a little concerned about round two, neulasta and other possible SE.
What is the steroid crash info? If I take neulasta do I need a steroid? What is the crash? I had some Nupogen in hospital with cortisone/steriod, so, again am a little nervous about what may lie ahead.
Also, any of you who are taking neulasta: are you on 3 week intervals for infusions? With Nuelasta can you change it to 2 week intervals? Would that be possible? wise?
Still have my hair, I had it cut short and will shave it when it starts to clump etc. Have a wig and some hats. I am fortunate to be able to work at home, but have heard that chemo brain may make me forgetful? Will have to deal with that too.
Whew, it has been quite a roller coaster ride so far and I'm only1 down 3 to go.
Thank you all for posting. It is a great source of info and comfort to read these posts.
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Tomorrow is round 3 for me which will mark the 1/2 way point for me. I am sort of dreading the weekend and what it will potentially bring. It's frustrating not being in control and unable to do all the things I normally would do. In a positive note I do like getting extra sleep.
Mimi8: thank you for sharing your journey. It's good to see someone who has made it to the finish line. That's where I'm headed too! -
btdemo, not everyone has bone pain from the Neulasta shot. The over the counter antihistamine, Claritin helps prevent it or minimize it for many patients. You take the Claritin the day of the infusion and for about the first week afterward - once a day. Many drug stores care their own cheaper version of loperamide hydrochloride,which is the generic name. I have had the Neulasta shot after my first two infusions and haven't had problems with bone pain.
Most of us are getting a sterioid by IV before the chemo drugs on the day of treatment. The steriod wears off after about two days and then you tend to feel the side effects of chemo pretty hard for a few days.
I, too, work from home so far have been able to work a full day most days. It is a struggle for about day 3 through day 10 after a treatment, but after that it gets easier. I probably would have missed a little more work, but I am trying to save my sick time for when I think I'll need it most as the side effects may get worse with cumulative treatments. I don't want to run out of paid sick leave. My second treatment was a week ago.
I don't think Cytoxan and Taxotere could be given closer than 21 days apart, because of the "nadir" period when your red and white cell counts are low. I think even with Neulasta you need 21 days to recover between treatments.
So sorry you had to spend time in the hospital and hope things go better for you from here on out.
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Btdemo- Glad you found this thread and hope being here helps you get through your rounds of chemo. The regular 24 hour Claritin is what some take to help prevent the bone pain which may result after receiving the Neulasta shot or Neupogen shots. With that being said, understand that muscle aches and joint pain are side effects of our chemo regimen. I have read that some take one Tylenol + 1 Advil/Motrin every 4 to 6 hours to help with the pain. Before you take any OTC meds, make sure to talk with your onco to make sure it's okay to take those meds. If your pain is very intense, call your onco. He/She can prescribe some pain meds to help ease the pain.
To answer your question about the steroids ( ie Decadron), the steroids are to help prevent the nausea. They have a tendency to get one wired and more energetic for a few days after you take them This may also mean that you may have trouble sleeping at night. If you find yourself awake at night and unable to sleep, try not to fret about not sleeping. Fretting about the sleep situation may make you more anxious. My onco said it would be fine for me to take one Benedryl tablet before going to bed so I could easily fall asleep. I did not take any sleeping prescription drugs as some do. The steroid crash is what one experiences because one may no longer feel energetic and peppy a few days after the steroids being taken. You may feel tired and lethargic.
When you are tired, you need to rest. When you feel shortness of breathe from walking and climbing stairs, you need to rest. Listen to your body and most of all be easy on yourself. We expect a lot of our bodies during this time and our minds want to do much more than we are physically able to do. Try remember that there is a lot of stressful physical things happening while you are in chemoland.
As for as your blood counts, the Neulasta shot/Neupogen shots are given when the need is demonstrated by a patient ( ie high fever; low white cell counts). One reason that those shots may not be automatically given after the first round of chemo is that the Neulasta shot is expensive and not all chemo patients need to this bone marrow boosting shot. If you do need the shot, remember that the shot may help keep you out of the hosptial in the future and is there to help you. As for feeling more tired as you have more rounds of chemo, if you receive a copy of your blood labs, you may want to look at the red cell blood counts. It is possible to help those counts through diet by eating red meat, spinach, iron enriched cereals and other foods. If those red counts drop, you may ask your onco if you can take an iron supplement.
Our chemo regimen is given in 3 week intervals unlike the chemo regimen of AC + Taxol. The AC may be given dense dose (every 2 weeks). If given that way, those chemo patients receive a Neulasta shot or a series of Neupogen shots the day after that infusion is given. Like GailAnn said, with our chemo regimen, the body needs 3 weeks to recover after the infusion. When I had chemo, I had my infusions on a Tuesday. I felt fine on Wednesday and Thursday. Friday would be the day that I would not feel so great and really feel the effects of the chemo (tiredness mostly). Saturday and Sunday, I would start to recover. I was very fortunate that my side effects were minimal and usually felt fine the 2 weeks after having chemo. I started getting a Neulasta shot after my 3rd chemo round (of 6 rounds) because I developed a high spiking fever and chills 10 days after my 2nd chemo round. My onco prescribed 2 antibotics and kept me out of the ER when I called her on a Sunday morning telling her that I had the fever and chills.
If you have any further questions, please post. You are not alone here and will get great support and help here!!!
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LW122713- Hope your chemo round was easy on you. Just 3 more rounds left!!! Wishing you minimal side effects!!!
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Mimi8- my father's side of the family are all Pittsburghers and all of us kids are Pitt grads. I currently live in the Lancaster area. Love the 'burgh!
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For you ladies that are between tx 2 and 3. I had much increased fatigue about a week after my 2nd tx until my 3rd which was 3 weeks later. Since that 3rd tx, 2 weeks ago my energy has come back. Not to normal, but certainly better than it was between the 2. I was afraid to get #3 because I thought I would get even worse. Hopefully that will be the case for you too.
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3 was definitely worse in the fatigue and weakness department for me. I'm expecting 4 to be the worst, but I will be done and I will put up with anything to get this behind me. I feel so frustrated be so out of it when the weather is getting so nice here and I want to be active.
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HI Everyone, Hope you are all feeling well this evening. Had my second round today. I too had bone pain from the Nuelasta, beginning on the Tuesday after my shot (shot was on Friday). I was on the Claritin, but for this time I will be having a hydration treatment on Monday, hoping to ease the bone pain and other side effects and also my doctor prescribed a stronger pain med to help. I have lost most of my hair, and I had noticed someone had recommended Argan Oil, not sure if it was on this board, but was wondering if this was pure oil or what brand was used. If anyone else has a suggestion, for somethig to ease the scalp tenderness, it would be very much appreciated. I was also wondering if there was anyone else going through this with young children, I have a 7 and 2 year old. Another question, has anyone looked into the alkaline/acidic nutrition. I am all of a sudden worried about a reoccurence, and want to try to protect myself and family as best I can. Does anyone else feel weird about wearing their wig, I have one which is very nice, but I feel like I am trying to hide something or trick people when wearing it, which I don't care for people I don't know, but at work I feel weird about it. I have just been wearing my scarves and people have been treating me just as normal, not asking questions, but not treating me any different. Just one person who stared a bit : ) My son would like me to wear his George Washington wig, "it even has a ponytail Mommy." My childen and husband have definitely been the best during all of this. Thanks so much for all your help : )
I don't post often, but all your posts have helped me more than you all know. Thank you and good night, hope you all get a good night's rest, I know it's hard these days : )
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GailAnn and Melrosemelrose; thank you VERY much for the info and explaining the details. I will have a list of questions for my next Onco appt. I will pick up some Claritin(or store version), ask about Tylenol/Advil and look into some iron rich foods. I am so grateful for these posts. I know I can post here and get info that will be specific and helpful which is also very comforting.
I do take Decadron but guess I didn't know it was a steriod, thought it was some kind of anti alergic reaction med. I had 2 doses of Neupogen while in hospital and had some lower leg bone pain, so I will know to watch for that.
GailAnn: I too am concerned about preserving my sick leave and so far have been able to work at a pace that doesn't leave me exhausted.
I do have another question: is there a reason to talk to my Onco about maybe recalculating my Chemo drugs? I understand that the dosage is based on height/weight and body surface (?). Would this be something that could prevent bottoming out on white count?
Thank you
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btdemo- You are correct that the chemo dosage is determined by one's height and weight. When I went in for my chemo round, I was always weighed first and then my vitals were checked (blood pressure and temperature). Then I had blood drawn to check my counts. Once the blood report lab was released, that information along with my weight/heighth and other vitals were sent on to my onco who signed off on the pharmacy chemo order. With that being said, understand that the chemo does two things--- goes after those rogue cancer cells and also goes after healthy cells, too. This explains why your white counts may be plummetting. At this point, the best approach for the onco may be to have you take the Neulasta shot/Neupogen shots to help your bone marrow. Yes, I know that the pain can be tough but it means the shot/shots are doing its/their job by making the bone marrow work harder. You may want to think of it like a growing pain that one might experience as a kid. I've read on these discussion boards where someone's dosage was reduced; however it was only because some of the side effects were so severe. You can certainly ask your onco about your chemo; it's one way to let him/her know that you are an informed patient.
One thing you can do throughout your time in chemoland is to eat healthy and enough. I know that the taste buds go on vacay but your body still needs protein and other good things so it can repair itself. I was given the book "Eating Well Through Cancer" which had recipes, shopping lists, menus and great tips of what to eat when having certain side effects. It is written by Holly Clegg and Gerald Miletello, MD. The other cookbook I have is the "Cancer Fighting Kitchen" written by Rebecca Katz. That book has great pictures and recipes and is a great to just read.
Ladies- It's the weekend (almost)...... Have a wonderful weekend and of course with minimal side effects.
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Ms. btdemo,
Welcome ! Ask away and you will get your answers here Dear. Everyone has Great advice and will help wihout fail. Be safe and well with peace, luv and blessings too.
Carolyn
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Made it through the rest of the week pretty well. Will be out this weekend chasing down your recommended cookbooks and stock up on some ingredients before round 2 next Friday. I have to say that being informed like this is empowering and it chases away the big fears of the unknown. So, thank you once again!
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Thank you Lisa for you sharing. I had my first round March 1,my 3rd in next week. I'm certainly not feeling very spunky and nervous about going in. I'm on day #3 of this rash which bugs me. I think I'll call in Monday and see what they say. I feel a little down today,thinking that maybe this treatment is getting the better of me. I talk to all my healthy friends,and here I sit on a rainy day. Wearing this scarf can be sooo annoying sometimes. I do feel better sharing with all of you on this journey! I don't feel sooo alone!! THANKS
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This is actually LW122713 but had to log in as an alias because my account had been deleted??. Does anyone know how to get in touch with a moderator to fix?
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For those interested in trying the two cookbooks Melrose recommended, they are both available on Amazon.
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Hi everyone
I'm not on here a lot but should be...you are all so helpful, open, caring. No one told me anything about claritin except you gals and my onc. got right on board. I just didn't take it soon enough...I started it the day after neurlasta shot and have had a really hard time with leg, spine and chest pain...but ahhhh ATAVAN tonight...changed everything. I'm also doing Cold Cap Therapy and I really think it helps with everything..I've had no nausea, my energy is good and I'm walking a lot everyday...that, hydrating and working full time. I think the cold distracts my overactive mind and makes me forget what's going on. It's also pulled my fun, funny family together in a great way...even EX husband who never talks to me.( he's ocd I think and the perfect man for the cold cap king)...we have a pizza- practice party the night before chemo, then chemo day starts with the caps, the pre meds, then 30min of caps for the 2 hours of chemo and the one hour of hydration infusion...the day ends up racing with the dry ice buckets home and being dealt with for four more hours on my head....and my"village" cooking a wonderful meal for everyone. It's been an incredible adventure (hard to believe I said that) and I honestly don't remember the cold being too much at all ( of course i don't remember that producing my daughters was a problem either...so maybe chemo brain has already set in...of course the caps on the head with the sanitary napkins to protect the ears, the mole skins on my forhead, the caps themselves. then cold wraps on the wrists and ankles and the peas on the fingers and toes makes for an incredible vision. Never a crowded infusion room so there's a lot of laughter each time we're there.
I am worried aboutmy bad reaction to the neurlasta and about neuropathy. I will ask tomorrow about the L-glutamine. I had a 1.1 tumor, no nodal involvement, clear margins but am triple Her 2 negative so aggressive treatment was the advice and I'm glad I've done this. ...4 rounds three weeks apart and i just finished round two. HALFWAY THERE! White blood count after first treatment was about 2...so I have had no choice with the neurlasta this time and it's been hard for me. Felt terrible for the four days after the infusion...l-glutamine questions tomorrow for sure. Thank you all...you are so wonderful and the information shared just can't be gotton anywhere else. To everyone who is just starting (I'm gong into my third of 4 treatments so I guess I'm not brand new anymore)here's what I'm thinking has helped me
...gather information, ask every question you can think of: we can change our diet (I'm juicing everything in sight and make a great vegetable broth every week that takes me a week to drink...I've stopped drinking alcohol, am avoiding anything in a package and avoiding caffeine and most sugar),I hydrate like crazy, and walk everyday... But I really believe that the main thing we have control over is our attitude and this site helps that happen..beautiful woman doing amazing and brave things... love to everyone and thank you so much for being there.
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Raehyg, I'm feeling so silly that I just noticed your response to my post when I felt pain that I thought might be from one ovary. You know, I think it was the same nerve pain like I've felt in other parts of my body in the first week after my first infusion. It was gone after a couple days. It was a sharp, stabbing pain, which my doctor attributed to the effect of the taxotere on my nerves. In this case I guess it was the "ovarian plexus nerve."
Your questions were good ones. No, I do have my ovaries, but may talk to my doctor about having them removed when I finish chemo and radiaition, since my tumor was very ER+ but I'm not a good candidate for Tamoxifen according to blood test that shows I couldn't metabolize it. I'm 57, but only peri-menopausal. Here I've been assuming chemo would push me over that edge and it probably will, but of all things, I had a period between my first two infusions and I had just had one the month before. I'd been down to about once every three months. Go figure! With my sixth grandchild on the way in October, I'm ready for the old reproductive system to give up the ghost.
Starynights, I hope you're feeling at least somewhat better by now!
indij1, it sounds like you have a wonderful support system and a great attitude, both of which will help you weather this storm.
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btdemo,
I am having my chemo every other week. The Neulasta is 24 hrs after the Ac and they switched me from the Clariton to Zyrtek which seems to have helped. I am also on Ultram xr 300 mg. that I had for my RA and the oncologist had me resume this and it has been helping. Just slightly achey....but who knows if its from the Ra also so my symptoms can be exasperated. The steroids are for the nausea to hold it at bay and I do not know why they don't wean us off. This last time (I extended it on my own for 1 more day but next time I am going to wean myself properly and see what happens). I have Prednisone for my RA so thats what I am using. I did crash but it was delayed...Day 5 I started to feel it and then today which is day 10 is the first day I am feeling better. It took a little longer but I had 2 cycles so far. Good luck to you.
Rachel
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Seastars I had terrible side effects from the Neulasta. I did skip it after treatment two. So far so good, next treatment is the 19th. Praying I can keep my white counts up. Will know Friday. I also felt funny wearing my wig even though its very pretty. Like a mask...grrrr. More a hat and scarf type.
Angie
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Angie & Seastars, I didn't get a wig because I thought I'd feel about it just the way you do. I figure everyone who knows me knows what my real hair looked like and knows it's gone, so who would I be fooling and why do I care what strangers think? I guess I also worried that a wig might look better than my real hair will when it grows back and that would be a letdown! Of course if I turned out to be one of those rare women who has permanent hair loss from Taxotere I'd make peace with wigs real fast!
Let me tell you gals what I did during my last infusion. I knew Cold Caps were definitely not in my budget. (I did get permanent eyebrows and upper liner done before chemo, so that was my ego indulging splurge.) But I thought to myself, "Ok, Self, so my hair is gone but I wonder if a little do-it-myself scalp cooling on the cheap might help minimize the risk of permanent hair loss or thinning, hmmm." I admit that possibility "wigs" me out a bit - pun intended.
Supposedly it happens to about 3-6% of people treated with Taxotere and I'll be doing six treatments. I have a friend who had chemo for throat cancer several years ago and her hair is still so thin on top you can see her scalp through it.So I have a supply of "turbie twist" terry cloth hair turbans that I soaked, wrung out, and froze in ziplock bags. I took them in a little cooler to my treatment and wrapped them around my head with a shower cap over them. As each one thawed out, my hubby handed me another frozen one. I think the nurse thought I was crazy, but she was a good sport. She says that in decades as a chemo nurse she doesn't know of anyone who had permanent hair loss. But I thought, "Hey, you see people during chemo, not after. Why would anyone come back here a year later just to show you their hair never grew back?!" Anyway, I'm sure my little strategy is nothing close to what Cold Caps accomplish, but it might be better than nothing, and even if it's not, it's easy and makes me feel like I'm doing something.
I'm not really a worrier, but I do like to feel like I'm doing something pro-active, even if I'm only fooling myself. When it came down to it, if my hair didn't grow back, I'd make the best of it and wear the cutest wigs I could find. I have friends whose daughter has alopecia and lost all her hair in her late teens. She is married and lives a full and happy life, so that helps give me some perspective on the hair thing.
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Hi Gailann,
I dont know if your "cold caps" will help, but they cant hurt. I had most of my hair falling out on days 14-16 and then on day 18 I had it buzzed 1/4 ". Since then it has thinned a bit more, but still has not completely gone, nor have my eyebrows or eyelashes.... I have round three on Tuesday, so wondering if will I every be completely bald or just have this last bit of buzz. My underarm hair is not growing, my bikini line is really thin but still some there, and my legs are smooth......
Anyone have any thoughts on IF the rest of my hair will actually go, or will it just start to grow back from here.... I have two more infusions to go..... last one is May 7th
I DID use the Moroccan oil treatment when it was coming out for the scalp pain and it really helped. Otherwise, feeling awesome, not too tired, and going on with life as normal, so I feel very blessed in that respect .
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Ijust had round 2 yesterday, not too bad. I made myself drink 60+ ounces of water, took a while for it to get thru my system (2am 4ma 7am) but will try to do this throught out the next couple of weeks to avoid some SEs. I am half way thru!! I talked to onco re; neupogen instead of neulasta and he agreed. I responded well to Neupogen in hosptial (low white count after round 1). And, it's a lot cheaper (there is no generic version yet). And we talked about dense dosing, every two weeks instead of 3 bkz now I will be taking neupgen. Actually, I like the 3 week rotation, at least the by the third week I feel better. And thank you GailAnn for the reference to the nadir. I brought it up and I'm sure it helped to show I am informed.) And they recalculated my chemo drugs to accommodate my reaction last time. (plus I lost a couple of pounds). I am taking claritin and hope that it reduces any reaction I might have to the neupgen. But the neupogen is not as long lasting as the neulasta so hopefully any bone pain will not be severe. And Melrose: thank you for explaining the doxa. Havent had the crash SE yet but will know to look for it.
I can't thank you all enuf for the info and support. I really do feel more empowered, informed and not as fearful of the unknown.
I got my hair cut very short in anticipation of losing it. I let my salonista play around with it. Then on day 14 I had it shaved. It is day 21 and I still have a 5 oclock shadow?? I'm sure it will rub off in coming days. I originally didn't want a wig either (and only wear hats at home). But I did buy one that looks very similar to the hair style I had. I usually give my salonist free rein with color so it is no unusual to find me with a different color every 6 weeks. So the wig actually looks ok (feels a little weird but looks ok).
GailAnn: can you tell me more about eyebrows? I heard they are the last to come out and I'm not sure what the alternatives are. I have read you can get henna tatoos, or hair eyebrows...not sure what that is all about.
Thank you again all, you have made this process more understandable and bearable. I have a good support network (small bkz I am pretty private) but this forum has reallly helped me thru. Thank you
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I'm going for treatment 4 next Friday. My hair experience is like yours, Milo. Hair started coming out by the fist full on day 14 after first treatment. I had it buzzed it off. I continued to have hair growth (hard stubble) and buzzed again around tx 2 because it hurt and itched. I decided not to buzz around treatment 3 and my head hair is coming back gray (I was gray before and colored to my natural dark brown) but not hard stubble as before, it is softer. Did not have scalp pain since treatment 2 and I moisterize my scalp if it gets itchy. I decided to let it go and see what happens. Eyebrows and lashes are thin but not gone. Bikini hair 75% gone. Leg hair not growing. Arm pit hair growing thinly.
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Hair today, gone tomorrow......
Here is the scoop on the eyebrows & eyelashes- They may wait and fall out after you finish chemo so don't be too surprised it you start to notice that they are getting a little sparse. I had 6 rounds of chemo and the eyebrows started to disappear after the 4th round and shortly after the 6th round, they were very very sparse ( like only a few eyebrows left.) My top eyelashes never fell out but the bottom ones did fall out. They came back fairly rapidly and have not fallen out again. The eyelashes and eyebrows are on a different growth cycle than the head hair and can fall out and grow several times during the first year one is PFC.
I never buzzed or shaved my head after I got the 1 inch boy cut after my 1st chemo round. I had a very thin veil of hair left by the end of 6 rounds and except for a few hairs, those pre-chemo hairs finally fell out. However, beginning around the 4th round of chemo, I noticed I had some new growth. However, that new hair would fall out after the next round of chemo. About 3 weeks after my final chemo, I think my hair follicles decided it was safe to come out since no more chemo was hitting them. I'm 8 months PFC and have a head of hair that is at least 2 inches long. I've been using Nioxin shampoo and conditioner that I found at TJMaxx. I've been extremely lucky in the hair department since it came back straight and in the same color as it was pre-chemo with just a little more gray than I had before. No chemo curls( aka cherub curls) for me.
As for the rest of the body hair, the nose hair, the leg hair and arm hair may still go. My onco had told me that I may still have to shave my legs during chemo. However, that did eventually fall out. As for the hair down south, mine left but has made a return.
Wishing each of you a good restful and minimal side effect weekend!!! You, gals are getting through your time in chemoland.... Keep up the good attitudes and work!!!!!
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Hi All, I did not have neulasta after treatment one but probably should have, I have only had to have 4 mg after 2 & 3 and probably with the 4th. I had treatment #3 on the 3rd and this has been the easiest one so far, just tired,short of breath and a little light headed. My dr sent my blood out for an iron study since I'm a little anemic. My eyebrows are a little thin but eyelashes are still hanging in. I shaved my head to an inch on day 16 and I'm surprised how much there is, I should say I'm almost bald but have some hair left that I will shave once my hair starts growing. I'm using Nioxin shampoo also and I notice everyday that I have little granules all over the place coming out of the follicles. kindof like their cleaning out and getting ready..... my arm hair hasn't come out nor my mustache hairs. I drink at least 64 oz of water/gatorade a day but would like to drink 80. Cant wait for the last treatment on the 24th only 11 days to go!
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btdemo, I had my eyebrows tatooed with what I think is called a "hairstroke" technique by a gal who has been doing permanent cosmetics here in San Antonio for almost 20 years and has a great reputation, but I had time to do it and heal up before starting chemo. I had upper liner done at the same time. I don't think it's something that would be safe to do during chemo because we're at so much more risk of infection now. My real brow hair hasn't come out yet, but I had also heard that it often doesn't happen until after the last chemo infusion. My 3rd infusion is coming up this Thursday.
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Dear Sweet Friends, I have changed my user name after reading some of the privacy recommendations for the discussions and realizing that our posts are searchable. It seemed best not to use my real first and middle names. I don't think people can see our pictures/avatars unless they have created accounts, so I'll wait a few days before changing that, so those of you who have come to recognize me on this thread will know who I am for a few days of transition.
I'm not so concerned about my own privacy, but I've just learned some very difficult news that I may share with you all from time time and I want to be especially careful about protecting my precious granddaughter's privacy. My sixteen year old granddaughter, has been diagnosed with a very rare type of breast tumor that is even more rare in anyone under forty. She is my oldest daughter's oldest daughter and was my first grandchild. When we first learned about her lump we had every reason to believe it was a fibroadenoma, which is pretty common benign tumor in adolescents. Still I hated the fact that she needed to have core needle biopsy like I did.
As it turns out she has a Phyllodes Tumor, and they are very fast growing and invasive. They can be benign, malignant or borderline. It has to be surgically removed and quickly. The biopsy showed no cancer, but they won't know for sure until it's been removed and a pathology report is done on all the tissue. When they do occur in younger women, they are usually benign, but even then the agressive nature necessitates at least a wide excision lumpectomy. I cannot tell you how devastated I am to know that at her age she is going to have to go through any part of this experience.
She is an exceptionally sweet, modest, mature sixteen year old with a strong faith. My daughter told me that she found the lump when she did because since my diagnosis, she began doing self exams. That is at least some small comfort to me and I'll be trying to help her know what to expect as she goes through any procedures I've already had. I'll be praying her through this, and appreciate all your thoughts and prayers for our sweet girl.
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Dear Sweet Friends, I have changed my user name after reading some of the privacy recommendations for the discussions and realizing that our posts are searchable. It seemed best not to use my real first and middle names. I don't think people can see our pictures/avatars unless they have created accounts, so I'll wait a few days before changing that, so those of you who have come to recognize me on this thread will know who I am for a few days of transition.
I'm not so concerned about my own privacy, but I've just learned some very difficult news that I may share with you all from time time and I want to be especially careful about protecting my precious granddaughter's privacy. My sixteen year old granddaughter, has been diagnosed with a very rare type of breast tumor that is even more rare in anyone under forty. She is my oldest daughter's oldest daughter and was my first grandchild. When we first learned about her lump we had every reason to believe it was a fibroadenoma, which is pretty common benign tumor in adolescents. Still I hated the fact that she needed to have core needle biopsy like I did.
As it turns out she has a Phyllodes Tumor, and they are very fast growing and invasive. They can be benign, malignant or borderline. It has to be surgically removed and quickly. The biopsy showed no cancer, but they won't know for sure until it's been removed and a pathology report is done on all the tissue. When they do occur in younger women, they are usually benign, but even then the agressive nature necessitates at least a wide excision lumpectomy. I cannot tell you how devastated I am to know that at her age she is going to have to go through any part of this experience.
She is an exceptionally sweet, modest, mature sixteen year old with a strong faith. My daughter told me that she found the lump when she did because since my diagnosis, she began doing self exams. That is at least some small comfort to me and I'll be trying to help her know what to expect as she goes through any procedures I've already had. I'll be praying her through this, and appreciate all your thoughts and prayers for our sweet girl.
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Oh you Gals all have such interesting and thought-provoking stories. Well, I am happy to announce the completion of Chemo and Neulasta shot #3 with just one more to go! Labs have been good, nausea a bit of a problem, bone pain and lead legs getting better. I'm planning on resting up for the next few days as my "MAN" is coming to see me from DC and it has been since August that I last saw him. We date by telephone every night but I am literally counting the days until he arrives on the 18th at DFW. We (I) am going to play a game with him to see if he can find me at his baggage claim as I plan to wear my best wig and disguise. That should start things off in a fun manner. Then, it's room service breakfast in bed for a week and some good times here in the Dallas/Fort Worth area. Any suggestions would be appreciated. Peace y'all and a blessed Sunday and minimal side effects to all.
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I am so sorry about your granddaughter! How horrible to go through especially at that age! Prayers are being sent her way!
Rachel
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Have fun cm
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I just read your post about your sweet granddaughter. What a devastating thing for her, you and her family to go through. I cannot express how very sorry I am and how sad this news has made me. Tears are streaming down my face as I write this note. I will make it a special point to pray daily for her, you and the whole family. I will plead with God to not make her go through any of the horrendous treatments we have all managed to endure and I will expect to hear GOOD NEWS ASAP. Please let me know if there is anything you or she needs at any time Sister Warrior. Peace, love and blessings to all,
Carolyn
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Hi Annie, Lots of prayers for your granddaughter it always breaks my heart to hear of these young women dealing with this.
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I start TC on Wednesday. 4-6 rounds depending on how well i do. I went through this almost 2 years ago! Not angry, but disappointed to 'miss' another summer. I'm 41, stay at home mom, daughters age 12 and 9. You can see the deal in my signature. I won't be getting a port this time. After chemo, surgery to remove remaining areola and right axillary node dissection. Then twice per day radiation.
I'm debating doing the fingers and toes icing. I didn't with Taxol and had no nail issues, neuropathy was mild and diminished completely.
I still have my scarves. Maybe I should get rid of them when I'm finished with them this time! I never got a wig and I won't this time either. -
AnnieLane: So very sorry to hear about your Grand Daughter. I know that must be truly heart breaking. I'm so glad that she was compelled to do self breast exams. We all wonder why this is happening to us and your diagnosis helped your grand daughter to catch hers early. I wish the very best for her and that you all can have the strength to deal with all that you have been dealt.
Cider8: I am so sorry that you have to do this again. I think everyone on this board has already thought about this happening and how hard it would be to have to do it all over again. I know I have and can't imagine what you must be feeling. Stay strong. We are all here to support you. -
Cider8, I am so sorry you are having to go through this again. I've often thought about how much harder it would be to have gone through this when I was raising my children. My heart goes out to you. You are the age of my daughter (well, she's 40) whose 16 yr old daughter, has a rare Phyllodes breast tumor. She also has 14 and 9 yr old daughters. I am 57 (I was a teenage mom myself) and I'd sooner go through this 10 times over than see my daughters or granddaughters go through any of it.
Thank you all for your kind concern for my granddaughter. We have learned that a Phyllodes tumor, even if it's benign, may require a mastectomy. She is a high school junior who is in the process of visiting and applying to universities and has two AP exams scheduled before the end of the school year. She also has plans to go to Africa this summer on a service project with a group from her church. They just got her diagnosis Friday, so her world has been rocked.
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Annie.....I will be sincerely praying for your grandaughter. She sounds like an amazing young woman. And you and family are there! I'm the older one in this room (65) and she's sooo young! Thank you for sharing.
Cider.......I'm thinking about you.....really........all of you. This room allows us to share while we are in the middle of this journey. I thank you all for sharing and listening to me..................
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Cider8- So sorry to hear that you have found yourself back here. As for the icing, that is purely a personal choice. I iced for all 6 rounds of chemo and glad that I did. If you have any questions or need some practical help, post your questions. We are all here to help you get through your time in chemoland!!!!
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@ Cider8 - I too am very sorry to learn that you are back here with this group of Warriors. It must be devastating to have to deal with all of these horrendous treatments and side effects again. Please stay strong and know we are all here for you, night and day. Peace, love and blessings to you and yours. Hugs and a great week to all!
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From my current perspective, they should make NUTS that cause horrendous acts like this bombing today in Boston take chemotherapy EVERYDAY! I say this after losing a cherished family friend and dedicated Naval Oficer at the Pentagon on 911.
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Cmbernardi, I hate to wish anything bad on anyone but can you imagine making them have chemo? And double mastectomies! And no meds for pain or nausea!! SOOOOO sad at these senseless acts.
I don't think I've chimed in on this thread yet because I just started and know a lot of you are way ahead, some maybe almost through chemo! I've been reading though, hoping to feel prepared. I had my first infusion last Wednesday and the biggest surprise has been how mild my side effects have been. I'm the kind of person that has reactions to rice lol, so the idea of having all these poisons pumped into me and not having any really bad effects is just amazing to me. I thought I'd be at death's door by now! So I am really happy but afraid to hope they will all go this well. Did you guys find your reactions to each treatment to be overall consistent? I know the effects are cumulative but if I didn't feel too badly with this round, can I expect to feel OK for the next 3 too, or do I need to keep waiting for the other shoe to drop???
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Indenial: first of all, I like your name! If I would have been clever I could have picked that one too and it would have fit. Sometimes I forget I actually had breast cancer. I never forget the treatments and am constantly reminded that I have no hair but forget to put it all together and when it hits me, this startling wave of reality can be overwhelming so I guess I'm still kind of in denial.
I was so scared going In for the first treatment. I had no idea how it would go and have to say, i expected worse. The chemo and side effects for me have been pretty consistent. I've had 3 treatments, I'm officially half way through and the 4th is coming next week. Mainly the fatigue hangs around more than any of the other se's and oh yeah the hair loss was pretty traumatic. I think the Neulasta shot packed a bigger punch than the chemo. The bone pain from it was pretty intense. If you haven't had to have it consider yourself lucky. If you do have to have it, take Claritin for several days to help minimize the pain. I hope you continue to do well with it and its over for you with very little SE's. Stay positive if/when you can that helps. -
Thanks LW!! My MO is worried I'll react to the latex in the Neulasta shot so we're hoping to avoid it. I've always had alarmingly high WBC's so maybe that will work in my favor with chemo!
And I wasn't being clever with my user name lol. It's the only thing that came to mind when I was on the sign in page. I'm constantly in denial. I have no breasts (no reconstruction) and I shaved my head before it could fall out and I keep "forgetting" I have cancer. Except it's a weird kind of forgetting because I can never actually forget... if that makes sense. After my BMX I woke up on the cancer floor of the hospital and totally freaked out. I don't know where I expected to wake up, but it wasn't there. That is the one and only time I actually felt like a cancer patient & broke through my denial for a bit. I'm worried it will all hit me one day months or years after I finish treatment!
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Just heard from my daughter that they will be taking my granddaughter to consult with the surgeon tomorrow afternoon. They are about 5 hours away from us. I hate that I can't be there, but I'm too high maintenance to be of much practical help.
Welcome, Indenial - I'm glad your SEs haven't been too bad and hope that will continue to be your experience.
Cider8, my treatment center has frozen gel mitts and booties that I use to ice. I do it especially because neuropathy in my hands could prevent me from working even if I feel good enough otherwise.
Cmbernardi, so glad you're in the home stretch! Hope you feel good enough to enjoy your time with your guy.
I have my third of six infusions coming up Thursday.
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@ AnnieLane - hugs and love to you and that dear, sweet granddaughter. My prayers will always be said for her, you and the whole family. And thanks for your well wishes. Just 3 more days and I get a vacation from all of this mess!
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Thanks for that Melrose. Like everyone else, my hair and when it will come back has been on my mind! More than any of the other side effects.
I noticed something interesting about my finger nails. They have white lines that seem to correspond to each treatment I had. Like rings on a tree. Just glad I didn't lose any.
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cider8 - so sorry you are back here . I also had bilateral double mastecomy on 1/24 and surprised to hear you have breast cancer again, so wondering where how you found it and where was first one.
Annielane:- I will sure be thinking about your granddaugher and praying for her. I my youngest is 18 and I know how busy this time can be, college apps, searches, etc. My other two are 22 and 24 and a big help to me.
indenial: welcome to this awesome site. Im a 52 year old and as im writing this Im actually in my 3rd chemo infusion. I can say my SEs have been minimal to none, just occasion mild fleeting queasiness, my eating well, socializing as usual with my friends, and not even too tired (although I have a LOT) of energy. im lucky enough to be off work, ( I work in a hospital so too many germs) I miss my work friends and my SPIN friends, but they stay in constant contact. Hopefully your SEs will be minimal too. A positive outlook helps, a lot!!
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TMM60- My fingernails each had a horizontal dent for every round of chemo I had. Just keep taking good care of the nails!!! Wear those rubber gloves to wash dishes and keep your hands moisturized. I also noticed that as they grew out, that there was some slight discoloration of the nail. For a while there, I thought my fingernails were dirty but they weren't.... just the discoloration. This is one side effect I think we can handle!!!! As for the hair--- you just hang in there. I had my coming out day when I attended a formal black tie charity gala two months after my chemo. I didn't have much hair but decided not to worry about what others thought about my hairdo change. I had waist length hair until first cut it to short bob right before my UMX. The weekend before my second chemo, I gave myself a boy hair cut by making 6-7 little pony tails and snipping those little hair bundles off myself. (Very liberating to say the least!) My husband cleaned up what I had done with his trusty electric clippers and I never buzzed/shaved my head after that. I haven't had any trims since being PFC since my hair has come back very evenly and straight. No matter what, all of the gals here are beautiful.
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another thing I learned from a dermatologist is that as soon as the hair starts to come back you can use Rogaine FOAM FOR MEN. She just said be careful not to get it on your face...lol
Reading about the nioxin shampoo, and will research that.
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Dear Friends, I am relieved and so thankful to tell you that my granddaughter will be a having a lumpectomy next Monday. We have every reason to hope that her whole tumor is benign. Funny, a week ago, I couldn't have imagined saying such a thing, but life can change so fast, can't it? Our amazing girl is happy that she should be able to take all 3 of her AP exams as scheduled (she corrected me, I thought she was taking 2 this year.) Tonight she texted me to ask if I remembered how I felt about six days after my lumpectomy, since she wants to play bass at church the Sunday after hers. How I love that girl! If God can use any part of my experience to help her, then I'm glad to have gone through it.
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Thank you for keeping us updated. Prayers, hugs and love to you and your family today and into the future. Peace, Love and Blessings All. Have a safe and productive week with no side effects!
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AnnieLane- Thanks for the update. You granddaughter is a wonderful young woman. So thankful that she has you and her mom and everyone else supporting her and letting her know that she can get through this with a "tiger" spirit!!! Sending many many hugs and positive healing and calming prayers, thoughts and energy!!!
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I have the indentions across my nails too. They're pretty deep. I'm so hoping I get to keep them all! Positive...no period this go round after my first 21 day marathon period it never came back. Also, no underarm or "other" hair. I had laser hair removal in my bikini area last fall and didnt get to completely finish my last 2 treatments because of the diagnosis but chemo took care of ALL of it even the legs. I save SO much time in the shower now. Still sucks to be bald and have to wear a wig but I am finding positives too.
#4 is next Thursday, can't wait to be over half way!! -
So far I have seen no effect on my nails after 2 treatments, but I have iced my hands. Wonder if that has made the difference.
I've heard about the Nioxin shampoo and also heard that using dandruff shampoo with zinc can help the hair follicles recover from chemo. Maybe I'll get both and alternate
Today I messaged my daughter and granddaughter my advice for shopping for comfy post-lumpectomy bras. My poor daughter was down here two months ago to pamper me and hang out the weekend after my lumpectomy and now she's going through this with her 16 year old. She is a trooper, though. I'm so proud of them both. (They live up in your neck of the woods, CMBernardi)
Back to the chemo bar for me tomorrow and then I'll be at the halfway point
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Hope everyone is doing well this weekend!!!! I know that some of you will be finishing your time in chemoland shortly or already have!!! Wishing each of the best!!!!
I know it will time soon for each of you to try some new shampoo in hopes of getting hair to grow back. If you are looking to purchase the Nioxin and the price seems steep, just remember you won't need more than a few drops of shampoo to wash your hair and scalp. If you are very lucky, keep checking at Marshall's and TJMaxx to find some at a discounted price.
Enjoy your weekend and rest up!!!! HUGS!!!
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Thanks, Melrose. I just had my 4th and final TC yesterday- hooray! Tired and have lead legs and arms today- but otherwise feeling Ok. Getting my hair back has been on my mind and I do about an 1/8th of an inch of gray fuzz on about 75% of my head now. A friend gave me a present of some Wen cleansing conditioner last week. She had another friend who used it PFC and apparently swears by it for stimulating growth rate and keeping scalp moist. So far, I do like how it has kept my scalp moist and not itchy. I'll let you all know if I think it is increasing growth rate. Frankly, I'm surprised to see any hair coming back at this point. Brows and lashes are thin but still there. Bikini hair is 80% gone, no leg hair growth and only some sparse armpit growth.
On to rads in 3 weeks! The light at the end of the tunnel is getting brighter.
Wishing a restful weekend to al! -
TMM60- Yippee!!! Doing the happy dance for you!!! Now, rest and get ready for the rads!!! You may want to check out the Miaderm cream for the rads. (here is the info link for that: http://miaderm.com/ ) I've been told that plus Aquafor are two good things for the skin. You may want to ask your RO about the Miaderm (contains calendula which is supposed to be good). You can find it on Amazon. http://www.amazon.com/Miaderm-Cancer-Radiation-Treatment-Protects/dp/B004TB9SFE -- this is just one of the amazon links..) Wishing you the best!!!!
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Thanks for checking in with us Melrose. You know, I looked on Amazon for Nioxin, but was overwhemled by the choices: so many products! Do I want shampoo or scalp treatment or both?
In the meantime I picked up some shampoo with zinc, since I've heard that it might help too.
Of course I have three more treatments to go, but I'm halfway there now - had my third on Thursday and Neulasta shot on Friday. My red cell counts are down, so I'm taking a multivitamin with iron at my MO's suggestion. I normally eat very little meat, but I'll add more red meat to my diet for awhile.
I talked to my MO about the pain I've had that seemed like it might be ovarian. He was a little concerned and said that chemo will cause pain in tumors. The Metanx he prescribed after my second treatment seemed to help with my other sharp stabbing nerve pains, but not in that area. He stressed that I should go to my gyn soon after I finish my treatments. I've been wondering about having my ovaries out anyway, since I'm not a candidate for Tamoxifen and not post-menopausal enough for an AI yet. But like Scarlett O'Hara, "I'll think about that tomorrow."
For the next few tomorrows, I'll be thinking about my sweet granddaughter, of course. Her lumpectomy is Monday morning.
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I had my first infusion Wednesday. It was tough being back there again. I was OK until I almost passed out from the first stick (no port). That surge of physical discomfort and lack of control brought me to tears. I got through it by talking with the nurses, my sister and the social worker. My MO said I might feel the chemo a bit more since I had it before. Today has been tough. I had about 3 3-hour naps! I got a nice walk in, though, with my kids.
I'll be going to MD Anderson soon for a second opinion on treatment. So things might change. I couldn't bear waiting on starting any treatment.
I'm a bit weary to respond directly to the many kind comments. Thank you so very much. Big hugs to everyone. -
Cider8, than you for the update. I can only imagine how hard this is for you physically and emotionally and how weary you must be. Please feel free to update us when you can without feeling any pressure to reply to our responses. I'm glad you will be going to MD Anderson and hope you get the benefit of the best minds and the newest information they have to offer. I recently talked to a lady here in San Antonio who went to MD Anderson for her treatment and she was very glad she did. I will be praying for you, Dear Sister.
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AnnieLane- I use just the Nioxin cleanser (aka shampoo) and the conditioner for thin to medium hair. I use the conditioner once a week. I have the scalp treatment but don't use it since my hair seems to be growing back just fine. To help you figure out what kinds of foods to eat when you have a low red blood count, check the Livestrong.com website. Here the link to the search that I did: http://www.livestrong.com/search/?mode=standard&search=foods+to+help+your+red+blood+cell+count . You will find there are lots of foods to eat to help those red blood cells and those foods that can help absorption. Congrats on being half way now!!! As for the Tamox situation for you post chemo, you may want to do a little more search on the accuracy of those tests to see if your body absorbs Tamox. I asked my onco about that test and if I needed on. She told me that the results of that test are questionable and that I would not have that test. I'm taking the Tamox and have been since September. Thinking of you and your sweet granddaughter and wishing your family the best!!!
Cider8- Glad to hear that you got through that first round of chemo. Hang in there!!!! Hope you feel better soon!!!
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Hi... I had my 2nd cycle of tc last april 17... Now my skin on my hands are peeling, developed some rashes on my bald head
its very uncomfortable. I have these leg pains too and a slight sorethroat. Any suggestion will really help. Thanks a lot. God bless us all -
IF RASH ITCHES USE BENEDRL SPRAY OR CORTISONE CREAM. THE ABSOLUTE BEST PRODUCT FOR DRY SKIN IS BAG BALM WHICH IS USED ON IRRITATED COW UDDERS. I HAD MY FIRST TC CHEMO ALMOST 3 WEEKS AGO. ENDED UP IN HOSPITAL FOR 3 DAYS WITH SEVERE SHORTNESS OF BREATH. THEN WITHIN AN HOUR OF GETTING HOME HAD HORRIBLE BONE PAIN FOR 2 DAYS FROM NEULASTA. PAIN RELIEVED WITH CLARITAN AND PERCOCET. SO NO MORE TAXATERE WILL USE ABRAXANE INSTEAD AND TAKE SEVERAL NEUPAGEN SHOTS AFTER EACH CHEMO INSTEAD OF NEULASTA . ANYBODY ELSE HAD REALLY BAD SIDE EFFECTS? I AM USING ICE CAPS AND SO FAR HAVE MOST OF MY HAIR. BUT I AN STARTING TO SHED DAY 18 DAYS POST FIRST CHEMO. SOME SHEDDING IS EXPECTED WITH COLD CAPS. I PRAY FOR EVERYONE ON THIS TC LADIES SITE EVERY DAY.
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Hi Everyone,
I'm new on this site but started my chemo Feb. 27. (AC every two weeks x four sessions). I start Taxotere May 1 every three weeks x four. My Onc said I had tolerated the AC well. Some people end up in the hospital a couple of times. I'm not sure why exactly. I worked very hard to stay hydrated even waking up during the night to drink water from my bedside. At first I had absolutely no appetite. I had to force myself to eat and nothing tasted good. I've lost 25 lbs. since I started chemo. It was ok with me since I needed to lose weight. Lol. It seems the things I used to like I can't tolerate. I've found a few new things to eat. It seems I crave protein.
Energy level has been very poor. Onc found I was low in Potassium. Hard to take such large pills but I do feel better. Stamina is not great. I had Fibromyalgia, Arthritis, Hypothyroidism, etc. before I started all this so I'm not surprised.
I was already on acid reflux med and stuff for my IBS. I always have a prob with diarrhea and this only made it worse. I took Reglan for nausea and only several times felt I might throw up but didn't. I would certainly recommend taking the Claritin like they say. After my first Newlasta shot I forgot and had bad bone pain, chills, etc. a few days after.
I have enjoyed and learned a lot from all your posts. It amazes me how many things we have in common. I pray for the best for you all. One other thing I noticed is that a lot of you are from TX. I am actually a TX girl myself just now find myself in LA married to my college sweetheart.
One question I do have is even though the Onc said I should sail right through Taxotere, one of the nurses said I could lose my fingernails. Now I've lost almost all the hair on my body but fingernails really!! Has anyone experienced this? I get a mani/pedi about once a month. I like gel lacquer and french manicures. Should I stop this or what? Yes call me vain but ...
Best to all,
Deb -
One other question. I have a port. It flushes well but very difficult to draw blood. They have had to use Cathflo each time and draw blood from my arm. They think it's a fibrin buildup. Anyone else have this problem? Did it resolve? Thanks.
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Deb-in-LA- Port--- My port had a mind of its own. It would always flush well but then the blood draw was another matter. Sometimes, there was blood flow and then other times, nothing. No matter what I did, change positions, moved my arms, laid down, etc.... that port just wasn't going to give blood. A few times, the nurses would adminster "TPA" which is used to dissolve clots for stroke patients.
As for the nails and Taxotere, I iced my fingernails and toe nails for 1 1/2 hours during the infusion--- 15 minutes before the infusion, 1 hour during the infusion and 15 minutes after the infusion. I did not have any major nail damage other than slight discoloration and horizontal dents. As for the gel lacquer and french manicures, you may want to ask your onco if those are okay. I just used Essie Top and Bottom Coat to help keep my nails strong and sometimes used a light transparent pink polish (Essie Mademoiselle). I wanted to be able to see my nails. As for nail damage, a few of my gal pals experienced nail damage- lifting plus very dark discoloration and loss of nails. I didn't do mani-pedis during my time in chemoland because of fear of getting an infection and not knowing how clean the salon tools are. If you need additional info about icing, I can post some info or send it to you by private message.
Forest-Welcome!!! Hang in there!!!! Hope the Abraxane works better for you with less side effects.
Wishing everyone a good week with minimal side effects!!!!
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Hello Everyone. Wanted to update you that my granddaughter's lumpectomy went well today and she is resting at home. Now we are praying for good (but accurate) news from her pathology report later this week. Although her core needle biopsy indicated a rare Phyllodes tumor with no malignancy, we are waiting for the complete path report on the whole tumor before we're 100% sure of either. Also hoping and praying the report will show clear margins, so she won't need a second surgery.
Meanwhile I'm cutting myself some slack and pre-scheduling a little FMLA/sick time from work after each remaining treatment, so I didn't work today. It's interesting how you learn your own pattern of what to expect in the week or so after an infusion and it's fairly predictable.
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I'm glad your granddaughter's lumpectomy went as well as expected. She's in my prayers, especially during the wait for results.
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Deb in LA - Just had my third treament of T/C on Friday. It has not effected my nails. I just cut them a little short. Always have had very dry rough cuticles. I just started using a very good organic goats milk lotion twice a day and it seemed to take care of the roughness. I also have IBS and its been giving me a fit. I take imodium during and after the treaments. It stops the diarreah but I still have the cramping. I wont get into alot of details with the IBS but was told the taxotere does give those with the IBS a fit. Private msg me if youd like for the icky details. lol I also have hypothyroidism and have had low low energy. Seems to lift about the 6th day after and Im able to take care of my two little grandbabies with no issues. Hope you do well with the taxotere !
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I quit with my regular mani/pedis but did break down and get a pedi two weeks ago. I just told my nail tech what was going on with me. They have a super clean shop and everyone gets sterilized instruments. You would have thought she was manicuring a baby she was so gentle. Just scrubbed my heals with a roughie and used no blade on them. If its somewhere you go often you should be fine. Just make them really spray/scrub down the foot bowl. Im not sure Id go for the gel, just my opinion. I dont know something about the uv light kinda makes me wonder if it would be good for the nails. Id think maybe "let them breathe"? Good luck.
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AnnieLane... I have had excellent WC results. I just had treatment three and no Neulasta injections since after the first one. Came close after treament two but was able to pull it out. Guess Im one of the lucky ones as I had HORRIFIC SE after the neulasta. I truly thought I was going to die. 500mg Oxycodone didnt even touch the pain I had. Told the doc I wanted to skip it and see how I did. Now for my diet...Im not a huge red meat eater but have not been able to eat or look at chicken. ICK ! Have been frequenting a nice little meat market that has great grain fed beef. Steaks, beef tips, big thick hamburger patties, roast. For sandwiches Ive been eating Boarshead roast beef on Pita. I eat the red meat everyday as its the only thing that tastes good. Veggies, salads, brown rice and sweet potatos and sweet potato fries. I have no idea if this is what is keeping my WCs up or not. But the doc said my numbers were better than good. BTW I still feel super tired, bone aches, frequent headaches and mild nausea
at least the counts are up.Angie
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TMM60...Congrats on getting that last treatment. My last one is coming on May 10 and I plan on doing the happy dance ! Just had #3 last Friday and its hitting me hard. Mild headache, good bit of nausea, heavy achy legs...oh geesh tired of this but do know come Friday I should feel like a different person. I also have about 75% of little white hairs coming in on my head. Dark ones are still stubble, whats up with that? Lashes and brows thin but there ! I think we are side effect twins ! I too am looking forward to getting started on the rads and hope its going to be a cakewalk.
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Thanks Angie! Sorry to hear your IBS is flaring- what a drag to have that on top of chemo SEs
I'm on day 4 post 4th TC and biggest SE this time is that I am super weak and tired- lead legs! Getting my butt up off the couch and up the stairs is a struggle. Thrush again- no surprise there. But I really have nothing much to complain about and am so happy to be hauling my tired bald butt out of chemo valley.
Strength to all you other TC sisters out there- you can do it! Post if you have the strength- I've been thinking about all of you and wonder how you are!
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WOW am I having pain from Neulasta. Day 7 from infusion. I've been taking Claritin every day since the shot. The regular aches all week. But this evening I started with this pulsating pain in my hips and lower back. A much higher intensity of pain, which surprises me. I took some ibuprofen and I'm hoping it kicks in soon. I have some leftover Percocet I may need to tap into! I don't recall having pain like this last time. I will call the nurse tomorrow.
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Cider8, I wonder if there's any possibility that could be nerve pain as opposed to bone pain, since you describe it as pulsating. My MO concluded that after my first treatment I was hit very hard by nerve pain- not peripheral neuropathy, but shooting, sharp, stabbing, pulsating pain just randomly all over. I had it at times in my legs and lower back, also in my head, ears, jaw... It seems to have been helped a lot by Vitamin B6 and B12 supplements. The B12 is a prescription called "Metanx" that is pretty expensive, but realy seems to have helped me.
I've only had mild to moderate bone pain that I could cleary relate to the Neulasta, but I know several people on this thread have really suffered with that.
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Interesting. I guess I shouldn't assume it's Neulasta pain this far out. Ibuprofen has diminished the pain! Not pulsating anymore. Thank goodness! I haven't taken my b-complex for a couple days, so I will make sure I take it.
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cider8 I had the same thing pulsing weird pain in the lower back and very weak knees and thigh muscles. The pulsing part only lasted a day or two. Just found out today that my MO's office is charging 8000 per neulasta shot. Anyone else experience the same?
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to Deb In La....
I just had my third round of TC on Tuesday and this has been the hardest week for me, mostly just exhausted for three days. BUT im back to my old self and went to the Giants game Sun, Mon and tonight..... SOOO fun. As far as the fingernails go, I have read all the reports of people having nail trouble... white lines, black spots, breakage, etc. From the beginning I have kept my french gel manicure going, with my oncologists permission, and have had ZERO nail problems. My cuticules are worse without the gel nails, so I just keep going and they are great. I also get regular pecicures without any problems. Maybe these help?? I dont know but at least my mani/pedi still look great!
Also, sidenote that I notice that while almost ALL of my scalp hair is gone, the GRAY strands seem to have stuck around and are actually GROWING, even during chemo. Im kinda laughing.... really, .... the gray has to stay.???? anyone else notice this?
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Milo5...
It so weird my hair is doing the same thing. Gray seems to be growing straight up..lol and the dark is little tiny dots not growing at all !
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Milo5 and Everyone,
Yes, the gray is resilient and is growing regardless of the number infusion I am on or the day. Strong suckers! One more T/C treatment to go (4 of 4) and then on to radiation. WOW!
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So I found this kinda late.. but I had 3 rounds of cytoxan and taxotere starting Feb 6th, ended March 20/27th.. I can't remember. But we did not do the 4th cycle to bad fluid retention and chest pain from the fluid retention. I did not have any side effects really, only from the nunasta they gave the first round then decided I didnt need it because it caused me more problems than good. ie back spasums.. it was like being in labor.
But my question is, have any of you had the crazy fuild retention with the taxo? Apparently its like 6-15% of ppls who get it. Consitered an adverse side effect, and one of the main reasons to stop treatment.. only supposed to have like 5 lbs of water weight I gained like 10+ it was scary. But still having random swelling up, now going on 6 weeks after last treatment. Read, it can last for 16............ not thrilled.
Andy
(Stage 1b bc, ductal carsinoma/ bilateral, nipple sparing masto (12/21/12) /Chemo: cytoxan/taxo /Tamoxafin: not yet. /4th gen w/ b.c.)
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Andymc- According to my onco, it takes a long time for the body to recover from chemo. Exactly how long, she would not say. Just keep taking good care of yourself-- eat healthy, get plenty of rest and exercise. My fluid retention lasted for about 4-5 weeks but I also have been taking a high blood pressure medication that has a diuretic component to it. Glad you still find this thread. I'm sure the gals here appreciate knowing about your experience.
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Just wanted to give you all an update on my 16 yr old granddaughter. As my daughter put it, we got happy crappy news from her pathology report. Her tumor was benign.
But it was confirmed as a rare Phyllodes tumor and the margins were not clear, which means she has to have a 2nd lumpectomy on Monday. Since they weren't initially 100% sure it was the extremely aggressive Phyllodes type tumor, the surgeon didn't want to take enough of a margin to risk disfigurement with the first surgury. This time they will have to take fairly wide margins, but the surgeon is still hopeful that since she is still developing she won't end up with too much disfigurement. If she did need / want reconstruction, that would be done later. What this does mean either way is that she is going to have to be closely monitored for the rest of her life and will be considered higher risk for bc.
She has two sisters, 15 and 9, and I have a 14 year old niece who is prone to anxiety and freaking out about all this. I've been thinking about getting the book, "Taking Care of Your Girls" written by the founder of this website and her daughter.
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Tomorrow is #4 for me. Only 2 more to go...I can't wait to get this over with. My nails sadly are turning grayish blue starting at the cuticle and going up in like a crescent shape with some nice ridge action, kind of forming a hump. It's my thumbs and the next 3 fingers of each hand so far the pinkies seem to have immunity. I wonder how many words a minute I can type with pinkies only?
Andymc: I'm so sorry that your having to deal with the fluid retention. That has to be hard and very uncomfortable. I hope your MO can get this under control for you. -
Last chemo today, so glad not to have to do it anymore but I was suprised today to find out it takes a while to get well from chemo they said 6-7 months. I figured I'd be better in six weeks! Yikes. So that deflated my bubble a little. So when you get to the end after a few weeks we should post a timeline how we feel. Just a thought
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Happy crappy news indeed. Hopefully all the girls will be able to work through the fear and understand this can't take away their happiness, spirit, courage, etc.
I seem to have a low grade fever. 100.4 and I'm supposed to call if it's 100.5. I will call tomorrow. I've been trying to up the fluids (I did not do a good job the past 24 hours) and took some ibuprofen. I don't have that pulsing pain anymore, but I sure feel that all over ache and creak and fatigue. I don't recall having a fever last time, so I hope it's not a PITA. -
Melody, that's a good idea. Keep in touch with us. That way we won't think something is very wrong with us if we don't bounce back as soon as we expect. I have a friend who went through chemo for bc, but a different regimen and she says she didn't feel like herself for about a year. Are you moving on to radiation?
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Cider8, sure hope you feel better soon. I hovered at the edge of 100.4 after my 2nd treatment, but it never turned into anything more.
Interestingly enough, it's my niece who's the farthest removed from my granddaughter and myself who's the most worried.
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I will start a series of 6 cycles tomorrow of Taxotere + Cytoxan. Lots of anxiety about side effects -- surgery was 3 weeks ago and I am feeling more human again, but worried about which pof these horride side effects will take over, and when. I have my drugs and my wig, so that's a start. More in a day or two. Oops, I just realized it's April! May I still join?
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Annie yes rads in about 3 weeks and tamoxifen in 4
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hv1954- Join in... we will keep this thread going and open to anyone. Welcome!!!!
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2nd treatment on 4/12 went well, had 2 Neupogen shots on day 2 and 3. That seemed to help with the low white count on days 9, 10, 11 (no hospital this time!). Im glad to see that some of you have some grey hairs left. I was beginning to worry that since all my hair was not gone that the chemo may not be working (would hate to have to increase it or lengthen my treatment). This time I have been better about drinking a lot of water everyday and I think that helps. Treatment 3 out of 4 is May 3. I have heard that chemo is cumulative and some side effects can occur as time goes on, have any of you found that to be true?
Glad to hear some of you are DONE with the chemo. Congrats to you!!!
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hv1954, welcome! Melrose is the veteran here who started this thread to help the rest of us who were newbies at the time. I hope you found the chemo threads for newbies too, since there's a lot of good info there about things to have on hand for self care while you do chemo. Don't worry. None of us have had ALL the side effects. It varies a lot and there's a lot you can do to help yourself. The chemo will make itself known probably Sunday or Monday for you this time. Drink lots and lots of water. If it tastes funny, maybe adding lemon or lime will help, but you've got to hydrate.
I personally have taken:
L-Glutamine powder the day of infusion and for the following week to help prevent neuropathy, vitamins b12 & b6 daily to help prevent neuropathy and nerve pain, Claritin the day after the infusion and for the followng week to help prevent bone pain from the Neulasta injection, Senekot or Colace the day of infusion to combat constipation and Miralax or Immoduim as needed during the rest of the cycle. Rinsing your mouth with a solution of 1/4 tsp baking soda, 1/4 tsp salt in 1/2 C water will help prevent mouth sores.
Get yourself some moist bathroom wipes, hemorrhoid cream, very emoillient hand / body cream or lotion like Eucerin or Aquaphor, good emoillient lip balm, Biotene toothpaste and mouthwash, extra soft toothbrushes... I'm sure others, especially, Melrose will have things to add to that list.
btdemo, the only thing that I have found that has been cumulative is the fatigue. I've had three treatments so far. I have iced my hands and feet and I think that has helped prevent nail damage and peripheral neuropathy so far, but those SEs can definitely be cumulative.
For most of us, after the first week to ten days out from a treatment, we progressively start feeling better until the next infusion. It's not all solid misery. You WILL have good days
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I haven't been here for awhile. Good good news Annie! I've been praying for your grandaughter. As for me,I have my last chemo in a week. I just looked at my fingernails a little more closely.................YEP,there are changes. DARN!! I have visited with the RO,simulation on May 21st. I counted my eyelashes yesterday! After diagnosis I looked at women's breasts when I was in town,then I looked at their pretty hair,then their nice eyebrows,...now......i'm on to eyelashes!! WHAT MORE?!!Wishing you all the very best for this day,minimal SE's,good rest,good spirits..........
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What the heck ? Im 7 days out from my third infusion and feel like crap. Ache, extreme fatigue, nausea and diarreah. Im usually on the upswing by now. Anyone have this one hit them particulary hard? Im quite down in the dumps about it.
Angie
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Hi Angie, same thing happened to me with tx 3. Day 7 I had to take a day off work because I was so tired, achey, dizzy and nauseous. Never happened with the other tx's. Don't worry- it only lasts a day or 2.
For tx 4, be prepared for being super weak and tired. I took the whole week off post tx and am glad I did.
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Just had my first CT infusion on Wednesday..my second will be on May 15th. I am scheduled to travel to New Orleans on Memorial day weekend..the 25-27th..what are your thoughts on that ladies?? Input please..(I will be traveling on a airplane..yuck..germs!)
runnermom
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Runnermom1956- I don't know how long your airplane flight will be or if you have any LE symptoms. You may consider getting an LE sleeve and hand gauntlet. One is always at risk after having surgery.If you opt to get the LE gear, make sure you purchase a sleeve and a hand glove/hand gauntlet. It is important to have both since just wearing the sleeve only may cause LE. You would want to put the sleeve and gauntlet on one hour before the flight, during the flight and for one more hour after you land. I put my sleeve and gauntlet on after I clear the airport security. If you do get the sleeve, also get a pair of rubber gloves to help smooth the sleeve on your arm. You may also want to have some disposable gloves to wear when you use the restroom so that you don't have to wash the LE hand. You need to be measured for a sleeve/hand gauntlet by an LE specialist. You can purchase off the shelf the sleeve and hand gauntlet. If you want more info about LE, go the LE discussion threads and also go to Step Up Speak Out lymphedema website: http://www.stepup-speakout.org/ .
As for travelling, you may want to talk to your onco about whether it is okay for you to travel when your white blood counts will be at their lowest point. I don't know if you are receiving Neulasta shot /Neupogen shots to help your bone marrow produce white blood cells. If you are not, you would want to ask your onco what to do in the event that you have a high spiking fever. In general, you would need to get some antibotics asap to help your body fight whatever infection you may have picked up. As for how you will feel, it really depends on you and how your side effects are. You will just be emerging for the lowest point of nadir.... your white blood counts will be at it's lowest. If you are cleared to fly, you may want to get some really good face masks to wear while on the plane. You may also ask to preboard the flight and you would want to wipe down the tray table and arm rests with some clorox wipes.
Also want you to be aware about going through the airport security. Be prepared to pulled aside and checked by a TSA agent. Try not to get upset by this. I was checked because of my port. The TSA agents that have checked me have been very politely and almost apolegetic about having to check me.
For the most part, if you are feeling good and can go, have a good time.
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Runnermom19, I would just add one thing to Melrose's excellent advice. You GI system is likely to swing between extremes while you are on chemo. While I am usually starting to feel pretty decent ten days out from an infusion, the ol' GI system can still be pretty unpredictable. Even when I'm not having the runs, when I have to go, I have to go now and it's not necessarily a quick trip in and out of the bathroom. That alone would make me pretty nervous about flying before I'm through with chemo.
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thanks for the input. I am traveling approx 3 hours and LE had not yet been an issue but I will ask onc about the sleeve. Masks too..I am armed with them and plan on using them while traveling same with Clorox wipes..although I have always been OCD about germs(I am a Nanny and being around kids is hazardous re: the germ factor)
I woke up today the worse I have felt since Wed(24th) infusion...I will see how it goes..it's just day 3 and I will travel after 3nd infusion on day 10. Does it get worse with each infusion or better? Today just sucks,,even my hair hurts. I had my Neulasta shot on the 25th. Had to take a couple lortab to get out of all this pain(tissue expanders included..ouch) Tummy trouble or nausea not too bad as of yet. FINGERS CROSSED
Hope you all have a good weekend. Thanks so much for your input.
hugs
runnermom1956
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I started T/C on 4/3 and started bleeding 3 days later, my 2nd infusion was 4/23 and the vaginal bleeding started on the same day. I also could not void for hours after the 2nd chemo eventhough I was drinking a lot of water. My oncologist is thinking of refering me to OBGYN because these is unusual. Has any one else experienced this?
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Runnermom, just one more caution for you to be aware of. When you are in your nadir your red blood cells that carry oxygen are also low. Commercial airlines only pressurize the cabin to the equivalent of 8000 ft of altitude. Have you noticed that you get short of breath easily a week after chemo? That's because your red cell count is low. I agree with Melrose that you really should consult with your MO. There is a possibility you might get short of breath inflight if your red count is low combined with the cabin altitude. I am a former Air Force flight nurse and we often did not fly patients if their hemoglobin and hematocrits (elements of your red blood cell counts) were too low because of the cabin altitude inflight. Not trying to scare you or spoil your trip- we just want you to be safe!
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I had a lot of wacky bleeding for a couple months when I first started AC/T (premenopausal at age 39). For this round I started with a shot of Zoladex to shut down my ovaries, thereby making me cycle. My MO said the wacky bleeding was not unusual. It was never anything intense (like my post chemo periods/tsunamis). The spotting etc haven't been a problem for me. My Gyn does get to keep an eye on me because of all the scans showing ovarian cysts (normal cycling cysts for me) and thickened uterine lining (meaning stupid endometrial biopsies), all from Tamoxifen. All continues to be well down there.
Now the inability to urinate is not something I've experienced.
I have to say I'm amazed how much better I feel by day 9/10! Still taking it easy, but I do not feel like complete crap! -
OK..I am such newbie that I have no idea about nadir..and such. Before I started chemo I told my Onc that I was going to fly on the dates mentioned..she didn't seem concerned other than the possibility of me getting nauseated. I will talk with her again at my next appt.(upcoming Wednesday) Is there anything one can do to help with the lack of cabin pressure if red cells are low? Is it like hyperventilating?
Now I feel foolish having planned the trip at all.
Have any of you traveled about 10 days post chemo? Thanks TMM for bring this to my attention, I had no knowledge of this...
hugs
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Runnermom- I can tell this trip is important to you. Just share this discussion with your MO. He/she still may feel you are Ok to go. If you do go, keep well hydrated and avoid alcohol and rest inflight. Hugs to you, chemo does suck- but it doesn't last forever! We will be our normal selves again in time!
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Oh and by the way don't feel foolish that you didn't know about the red cell count and cabin altitude. Most people even in the medical field don't know that about commercial airlines. That is something that only medical people who specialize in care of patients in flight know.
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runnermom19- You can contact your breast surgeron about the LE sleeve and hand gauntlet. He/she may give you a referral to a medical supply place where you may be properly measured for the sleeve and hand gauntlet. FYI: I contacted my breast surgeon before I flew about LE. He said that because of the few number of nodes removed for the SNB ( 5 nodes) that he didn't think I would develop LE. However, he did say that if I wanted to be extra cautious that getting a LE sleeve and hand gauntlet couldn't hurt. I opted to purchase the LE sleeve and hand gauntlet since I'd rather wear those items when flying than deal with the consequences of LE.
By the way, we are just all so glad that you found this thread so you could find out more about the practical side to treatment. Any questions posted here help others know they are not alone.
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thanks for all the great input. I will talk to my PS and also MO. One more question..with TE in will I cause the metal detectors to go off?? LOL that would be interesting trying to explain.
On another subject..BONE PAIN..ouch..today was the worst as far as pain. It's like having shin splints but in every bone in my body! I was whimpering from the pain. I have had a hard time convincing my Dr's that the OTC meds are not working. I think I need the stronger stuff...anyone else have severe bone pain and what have you used for it? I tried claritin..didn't work..
HUGS ladies!
RM
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Day 5 post TC..OMG so days 1 and 2 very maneagable..didn't feel quite normal but could funtion. Days 3 and 4 and 5 OMG OUCH OUCH OUCH..My hair hurts, my bones hurt , I can barely walk without whiting out, I cry and whimper..(why and HOW can I be such a whimp?? I've run marathons for gawds sake!) I have a sore throat and ear aches from hell! Is this all normal? Input puhleeze???? when does the upswing come in this cycle??
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I too have severe bone pain after each Neulasta shot and the Claritan really does not help. Tylenol does not help either. The last time I saw my MO and complained of all of this pain he gave me Dilauded which I find really does the trick. I take between 2 and 4 mg. VERY SPARINGLY but it really does work. Nothing else touches the pain. I still take the Claritan but the Dilauded has worked wonders especially after T/C infusion #3 on April 10 which knocked me for a loop. On a positive note, I have my LAST T/C treatmetn and Neulasta shot on Wednesday and Thursday of this week and (put a fork in me) I AM DONE! YIPPIE! I hope the SEs of this last go round are much less as May is a busy month with graduations, family visits, Memorail Day and my 52nd birthday on May 31! Next I'm off to be mapped for Rads which I anticipate will be a lot easier on the body. And as a special treat my sainted Mother will be here with me from April 30 throgh the month of June. Amen for Mom. Cannot wait to see her and share the fun and love we always do!
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Runnermom...
I just had my third TC on April 19. I thought I was going to die !!!! I have never felt so bad had every symptom in the book except my fingernails didnt fall off ! Honestly worse Ive had yet. Cried and carried on everyday. I did start to feel better on Saturday the 27th. No more nausea or aches only the diarreah that I have to take Imodium for and the mouth sores which are a ton of fun because I wear a partial !!! I keep telling myself only one more to go ! Pray your SEs lessen !
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I had my 4th and last treatment last Wed and am not noticing anything worse. I've been resting alot thats about it. Sounds like I'm lucky. Hang in there!
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CM Stary and Melody
thanks so much for the reply..at least I know it's not that I am weak..the drugs just stronger than me, and I have to remind myself why I am getting this treatment..NO MORE CANCER! I send gentle hugs to you all and so happy for those who are done and healing thoughts to those who are in the midst of treatment.
I don't know who to ask about the pain meds...PCM? PAIN management? MO? What i don't want is to ask all of them and get a bad rap. and end up with nothing for the pain. I have an appt on Wednesday with all 3..beginning with a new PCM, then my fibro Dr(pain mngmt) then labs at the MO..What would you do???
I thank you for validating my pain tho..I thought I was gonna be stuck with it and no help at all.
and yes..thank goodness for MOM!
I am lcuky to have mine around at age 86 and very sharp! Mom lives up North yet but she has visited me after my surgery. I will see her in July, just after my last infusion,HUGS
runnermom 1956
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Melody--Congrats to You! I'll have my 4th and final in a few days!! Whew! Wait 3 weeks and do the radiation.I've connected to that thread for answers to questions.
Runner Mom-My WBC totally bottomed out at day #10,temp of 100.1. I kept my fingers crossed. You received good advice today from others. Questions for MO for sure.
Good luck to ALL of you today on your journeys.............
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Congrats to Melody for finishing her chemo!!! So happy for you !!
For those finished with their chemo or about to finish- Doing the happy dance for all of you!!! Try to be patient with yourselves as you start to truly recover from the chemo. You won't necessarily feel better immediately but with time, you will feel good again.
For those not quite finished-Hang in there!!!! I know it's hard and the tears flow so easily. Sometimes you feel like a million years old because you don't move around so easily; joints hurt and your breathing is sometimes short. You will be finished before you know it. It is one day at a time; one step at a time.
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Runnermom- Here is how I usually felt after chemo. I would get my chemo on Tuesdays. I would feel fine Wednesday and Thursday. Friday would be the day I would start to feel a little crummy. Saturday and Sunday were recovery days for me. I would take it easy and rest. By Monday, I was feeling better. The sore throat may be a side effect of the chemo. If you have mouth sores, try rinsing your mouth several times a day with this following mixture: 1/4 teaspoon salt + 1/4 teaspoon baking soda + 1 cup warm water. You need to make a fresh batch of this mixture everytime you rinse. You may also want to use a calendar to write down your side effects that you experience every day. It helps so you can have an idea how you feel after each round and so you can let your onco know about your side effects. Wishing you the best!!!!
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Congrats to all of you who are DONE with chemo! I have 3rd infusion Fri 5/3. Hoping for the best. I do have a question I haven't seen on here. What type of deordorant do you use. I was very hesitant to use any after lumpectomy and lymph node removal. Then I used "Toms", organic. What can you suggest? Thanks.
Also, is there a thread for Rads? I'm used to the folks on this thread but am wondering if it will go dormant once everyone's chemo is done. Your thoughts?
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btdemo- We will keep this thread on as long as you want to keep it going!!! No one has to go anywhere because some are moving on to rads. since you are heading into rads, you may want to check out the Miaderm radiation cream and aquafor. I've been told my gal pals, that the Miaderm is great for rads. Here is a link to the Miaderm radiation cream website: http://miaderm.com/ . You can order it on the internet http://www.amazon.com/Miaderm-Cancer-Radiation-Treatment-Protects/dp/B004TB9SFE . Make sure you check with your RO about what he/she prefers you to use. Some radiology centers give the Miaderm to their patients to use. As for the deodorant... I've read that others use Tom's.
Ladies: As I have said, we keep this thread open and place for all of you to continue to meet/chat as long as you want. We don't have to leave here especially if you are comfortable with each other. Hope all are doing well and wish for minimal side effects! HUGS!!!!
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Patti...had you been ok up to the 10th day or in and out or great til then? I don't know my WBC yet since 1st round. I get stuck Wednesday to see..but right now..I mean it's unbelievable how good I feel..I had 2-3 days of CRAP and now turned the corner..will I bottom out again? I value everyone's advice..absolutely!
I will ask again when I see MO Wednesday(day 7)
thanks so much for your response
runnermom1956
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Thank you melrose!! I'm very comfortable here and have gotten very useful info and support. My RO prefers aquafor, but when I get to that point (June maybe) I'll ask him about miaderm. I have saved your links to my favorites. Thanks again. Hugs
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I'm so happy for those of you who are nearing or have crossed the chemo finish line!
And so sorry for those of you who are having an especially tough time with SE's.
I'm ten days out from my third of six treatments and not feeling too bad, except that my heart hurts when I think about my sweet 16 year old granddaughter.
She had her second lumpectomy today to hopefully remove all traces of her nasty phyllodes tumor. This time they had to cut all the way down to the chest muscle and she's home, but in so much pain, worse than the surgeon led them to expect. I'll be so glad when this is behind her. But of course she's going to have to be followed very, very closely for the rest of her life, especially over the next two years.
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Annie OMG
So sorry about your Grand Daughter. Please know I send soft and gentle hugs and healing thoughts her way.
I am happy for you to be doing fairly well with your treatments.
Please keep us posted and LMK if there's anything I can do for you!
runnermom1956
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AnnieLane- I had a lumpectomy before I had my UMX. It was suggested to me to use some ice on the lumpectomy area to help numb the area and keep the pain down. I used the fleece pillow case from a travel neck pillow I had and put in an zip loc (double bagged) filled with ice. I was able to put this next to my skin without feeling like it was too cold. You may suggest that ice bag and also make sure that she takes her pain meds on schedule. It is really important to do that so she can stay ahead of the pain. Hope she feel better very very soon. She will get through all of this... she has a very strong family to support her (that means you and her mom and everyone else in your family)!!!
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AnnieLane - continued prayers for your granddaughter, you and her family. WHY is she in so much pain? Surely with all of the pain meds out there that can be alleviated quickly. I use Dilauded - VERY SPARINGLY - but it works better than anything. My Sis is a med-surgery nurse and suggested it to my MO and he happily agreed. Perhaps a suggestion to her parents?
Stay stong Sister Warrior in your own battle and take those SE free days as a great gift. You've not long to go now. I go for my LAST T/C infusion tomorrow and the last Nuelasta shot from HELL on Thursday. So excited! Get mapped for rads in a couple of weeks and start that regimen on June 3.
Hugs to all and continued thanks for all the support you all bring and give to each other!
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I use Alba Botanica clear enzyme deodorant in unscented aloe. I found it at Whole Foods. It doesn't work as well as strong anti perspirant, but frankly those freak me out now. But it does work surprisingly well and doesn't bother my sensitive nose.
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cmbernardi Congrats on the last treatment!
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Just wanna say keep fighting sisters.... God bless us all 🎀😊
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Thanks cider8, will chek out Whole Foods
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Sister Warriors - tomorrow marks the 52nd. anniversary of my BIRTHDAY MONTH! I was born on the 31st. and generally celebrate ALL MONTH and I highly recommend it. Coincidentally, tomorrow is also the day of my LAST CHEMO treatment and Thursday the LAST Neulasta shot. These first 2 days of my BIRTHDAY MONTH are truly a gift!
Peace, love and blessings with minimal SEs to ALL. I WILL keep in touch while trotting on over to the Radiation pages. You are all THE BEST!
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6 days post first infusion...So I ended up at the MO's office today with 101.7 and severe loweer back pain. They ran a CBC and discover I have a kidney infection! Wow! No wonder I have been so ill. I am on Levequin now..6 more days of it.. I hope this clears this problem up. I felt like I was gonna die..I mean shivering, whimpering, fatigued, fever..no appetite. My nexr chemo is May 15th. I hope not to have a repeat of this
runnermom1956
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Wow runnermom, no wonder you were so miserable! Hopefully no kidney infection next time means the next round will be much easier. Do you think all the pain you were attributing to Neulasta was actually the infection? Feel better!! HUGS!
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Oh, runnermom, so sorry! I can almost feel the misery! I had just a low grade fever on day 7 I think and I felt so horrible. Hopefully you are on the upswing. Well, I did not feel the upswing until day 9. So hang in there.
Going through chemo a second time still pisses me off. I told my MO I'd rather do the every 2 weeks so I could get it over with faster! Couldn't do that again, of course. Tomorrow is 2 weeks and I'm 'pleased' to have another good week before next infusion.
I'm afraid to wash my hair for fear of the fallout! It's still short, maybe 4 inches. I wore a pixie cut for about 6 months after my hair grew back and just a few months ago I started to let it grow longer. I do not feel like shaving it off before the fallout, which I did last time. I warned my daughters my hair will fall out any day now and they were so sweet. They comforted me! They talked about last time and how I might not wear a scarf at home but I will when out in public.
I am dreading the bald again. Trying not to obsess, but I did this already! Last time we had just redone our master bathroom. We did not have a new mirror yet and I decided I didn't want one while I was going through chemo. I think I didn't get a mirror until 2 or three months PFC. Now, I have that big bathroom mirror, and I'm not sure how I'll feel about it. -
I'm Off to See the Wizard!
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cmbernardi- Thinking of you and doing the happy dance for you!!! So happy that this is the last round of chemo for you!!!! Ring that bell after you are done so the entire world can hear it!!!!!
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Thanks Melrose and all my fellow Warriors for the good wishes. The bell will be rung loud and clear!
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runnermom19 I had awful lower back and some hip pain last night. It was hard to breathe it just kept spasming with every heartbeat but its gone today. I had this with treatment two also. The antibiotic your taking is very powerful I hope you feel well soon.
Cider8 I'm so sorry you have to experience the hair stuff again, I'd be pissed too
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Nice to read all your posts.........I'm having my last round tomorrow. Golly,better remember to take that silly steroid! I'll have a simulation for radiation on May 21 and now I'm dreading that! I'm having a hard time feeling emotional relief. Starting an antidepressant this pm,in hopes that I'll handle the radiation. btdemo-I posted in Spring Radiation Room.....Maybe I'll see you there and here.......take care warriors!
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BTDemo...
I have two oncologists one for chemo and one for rads. I asked my chemo oncologist about deodordant...he looked at me like I had a third eye. Said the only thing you need to worry about with deodordant is when you start your rads. Sooooo....do I worry or not?
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Pattithenurese
Dont worry to much about the simulation. I already had one before I found out I needed chemo and there was really nothing to it other than laying with my breast exposed for 30 mins ! I have to have another one as there was some blood (?) that showed in the first one that has probably disipated at this point.
Have my last chemo on May 10, doing the happy dance. As far as emotional relief...I think its the nature of the beast. I have been on antidepressants for years and dont see that they have helped much with the tears. Let'em flow is my plan of action.
Angie
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Cider8: I want you to know that I can completely understand that your pissed off. I can only imagine what you must be going through. I just had my 4th of 6 treatments and I think we all look to the end as the magnificent finish line. To then have to do it all over again takes a lot of patience and courage. I admire you for that.
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I agree with you Angie a good cry does wonders. I started paxil at the beginning of chemo because I was emotionally overwhelmed and I do feel they are helping me keep somewhat even keel. Now I'm reading paxil is a strong inhibitor of tamoxifen so what the hell was my MO thinking? I think I start it in 3 weeks. I read Celexa and Lexapro were OK. I have my simulation on the 9th so probably start rads around the 20th
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Hi Everyone. Cider8, no one in the world could blame you for feeling like you do. What a bitter disapointment it must be to have to go through this again. I think you are brave for just getting out of bed in the morning and putting one foot in front of the other. I've only had 3 treatments and I'm alreay sick of seeing my bald head in the mirror. It sounds like you have very sweet daughters, though.
CMBernardi, so happy for you and hope you have minimal SE's from this last infusion so you can enjoy your birthmonth & birthday! I will have my 6th treatment shortly before my 58th birthday. I like the idea of celebrating the month, because I sure don't expect to feel good on my actual birthday.
Runnermom, I sure hope the meds wipe out that awful kidney infection quickly!
My poor sweet granddaughter has been through such a tough time. She was in so much more pain after this second surgery and had a terrible reaction to the pain med: awful migraines and vomiting, so she's getting by with ibuprofen now. At least the pain from surgery is easing up some. Still waiting for the pathology report. I'm still having a hard time wrapping my head around the fact that my 16 year old granddaughter has had two lumpectomies within two weeks. Hoping and praying for better days ahead for her and soon.
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Naturopath recommended 20mg of Melatonin,and now I hear that shouldn't be taken during rads?! Can anything be done with this awful neuropathy? GRRR.....I'm sooo done! I'm afraid this is my new normal,and I'm not doing sooo good with this new me?!! GRRR....
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Patti, it's way to soon to think of this as the new normal. You are still in temporary mode!
AnnieLane, your granddaughter has been in my prayers.
I had my 40th bday in the middle of chemo, right after my 4th AC infusion, on one of the worst dog days. My girls were at my mom's for the dog days, hubs was home, quiet and brought me food and water. I was so wiped out I couldn't read or watch TV, I just laid there, sometimes with quiet music. Thank God it passed. I hear TC isn't as bad as AC. So far, it's true. I'm not so sure during the dog days, though!
The hair fallout has started. Now I'm not touching it to keep it longer!? -
Cider 8 - so sorry the hair is starting to shed. It was a bit of a shock to me at first, but now I am loving my scarves, hats, and the 2 wigs I got. Would much rather wear the scarves tho. Got them in many colors and patterns and just love the look! The last Chemo infusion and the last Neulasta shot went OK.
Well the last Chemo and Neulasta shot went seemigly uneventful the last 2 days, As mentioned before, the First 2 days of my cherished Birthday Month have been the greatest! My sainted Mom is here and spoinling me as usual. So STICK A FORK IN ME, I AM DONE with the Chemo phase and headed for RADS mapping later this month. As mentioned before the first 2 days of my beloved Birthday Month has been a tremendous gift.
Thank you all Sister Warriors for all the caring, concern, love, support and many, msny days of cheering us all up! I will never forget you all.but will be trotting on over to the Rads pages inthe near future.
Peace, love and blessing to all.
Fondly,
Carolyn
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Congrats to the bell-ringers!
I have # 3 of 4 tomorrow. I have noticed in the last week or so that my leg muscles are achy and sore (no, not from over use! lol). Is this an SE that can start this far into treatment? I thought it might be low potassium so I've been drinking more gatorade. No help.
My thumbnails have a ridge starting, at the cuticle line. My pointer and middle fingernails are getting a little discolored. This I know is an SE and hope nails will recover after chemo.
I know what you mean about the hair fall-out. I'm a private person and I haven't broadcast my diagnosis, but lack of hair is pretty hard to keep private, great wig or not. (did I see that someone said you can't wear anything on your head for rads? what about one of those operating room hats, geez there has to be something!)
This has been a roller coaster ride and without you all it would have been a nightmare. The info I have received here I have used at my Dr visit and he has listened and taken me seriously (tho the first visit with onc Dr was a little iffy, I think there were some internal politics going on, I may have to sort things out with rads Dr as well when I get there, but thanks to you, I will be armed with info).
Thanks to all, thoughts and prayers for each of you.
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YOU GALS ROCK HERE!!!!! I'm so glad everyone of you is making her way through chemoland and pushing forward. I know it's hard and the tears flow so easily. The hair leaving is not an easy event to deal with. Just remember, your hair does not define who you are. No matter what, you are beautiful.
As those of you leave this thread, thanks for being here. Hope that the support and info you got here helped you keep a positive outlook on life. One day when each of you has finished with your treatment plans, you will look back and say out loud... " Wow, I did that!!!!!"
Sending many hugs to each of you and lots of positive calming and healing prayers, thoughts and energy. As always, looking for a little peace and a little calm and a lot of good conversation, laughter and smiles and moving forward........
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Patti, I know it must be tough right now, but your body still has a lot of recovering to do from chemo. I agree with Cider and she knows from experience. This can't be your new normal. It's still the same temporary misery.
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Patti - feel better Honey child. This too shall pass! Stay strong and "Fight Lik a Girl". HUGS and inproved health sooner than soon Sister Warrior! Good night all and Peace.
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TO ALL WHO HAVE LOST SOMEONE TO THIS FU**ING CANCER SHIT.
A POEM THEM (my favorite poem of all time). R.I.P. DEAR ONES and all of the countless others who have fought hard but were needed by God in a better place:
Do not stand at my grave and weep
Do not stand at my grave and weep
I am not there. I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn rain.
When you awaken in the morning's hush
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there. I did not die.Mary Elizabeth Frye -
Had my last tx yesterday.Felt pretty good about it all,until I was told there has been changes in my creatinine levels,which concerns me with my wimpy bladder.I have to self-cath as it is. Sooo,today instead of feeling up........I feel anxiety about the next phase........GRRRR
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Hi ladies-I am late to the game in posting but have been reading this board since I started chemo and wanted to thank everyone for the words of wisdom and support offered here. I have my last treatment next week and can't wait to have it behind me.
For the sisters just starting out, my major side effects have been heart burn/reflux, back aches, and an itchy rash. After my 2nd treatment, I noticed my vein where I had my infusion was red and hard. It was a superficial blood clot that resolved on its own in a week or so.
Peace to all. -
PEACE to all new Sister Warriors and Stop Those SEs already, OK? It's the weekend. I posted this Flash Mob link a while ago but it is worth another look or a FIRST LOOK. It is a great, uplifting presentation. Please CHECK IT OUT. You'll love it:
cmbernardi wrote:
Good Morning Warriors!
Please CLICK the link below or cut and paste this link into your web browser to see an amazing Flash Mob supporting our cause! Scroll down a bit when the page opens and watch the video. Please share as well. Have a Blessed and Happy Day!
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Good Post on Another Thread
I walked across an open field at winter's break as the sun danced on the last few drifts. I imagined my fears would melt one by one as I learned to love myself.
I love the thought for the day!!!! -
LAKEGIRL - Yep all the standard side Effects (SEs) for you. Normal but annoying. YOU wrote these things and I suggest talking to your MO about some pharmaceutical support unless U have it already.
For the sisters just starting out, my major side effects have been heart burn/reflux,(TRY TUMS FIRST OR A SCRIPT FOR NEXIUM. TAKE EVERY MORNING OR AS NEEDED FOR HEARTBURN RELIEF - I MEAN GONE!) back aches (HEATING PAD, SCRIPT FOR FLEXARIL OR FIORICET OR DILAUDED FOR INTENSE PAIN AND BONE PAIN FROM WBC SHOTS), and an itchy rash (BENEDRYL AT NIGHT AND A OTC HYDROCORTISONE CREAM ON THE AREAS THAT HAVE RASH). After my 2nd treatment, I noticed my veins where I had my infusion was red and hard. It was a superficial blood clot that resolved on its own in a week or so. (MY VEIN IN MY RIGHT HARD GOT BURNED AFTER TX #2 AND IT TURNED INTO LOOKING LIKE A SUN BURN UP THE VEIN BUT RESOLVED ITSELF; ALOE GEL AND/OR EUCERIN CREAM WILL WORK THO.
MY MO is wonderful and had me on Ginger Capsules (get at Walmart for cost-savings). Use 3 days before and 3 days after CHEMO; Claritan 1 day before and 7 days after the Neulasta or Nuepogen shot to build WBC - helps with bone pain reliet. I buy the generic - Loratidine in Walmart too. D-3 1000 I.U. daily - Gummy form from Walmart and 2 Gummy multiviamins with any meal. A long list I know and there is still more: Zofran or Pheregan for nausea, Marinol for bad Nausea and loss of appetite (Pot in a pill form - yes it is legal), generic stool softeners (Docusate Sodium) and Walmart generic Mirilax for constipation from pain meds, Xanax for anxiety. - NO I AM NOT A PHARMACIST - but I play one on TV!
Best and keep asking questions in this forum. I just finished Chemo (4/4 TC stints and 4 shots) this past week. I just have all this stuff in my arsenal. Oh and LOTS of ginger ale, Ginger snaps, ginger tea, crystallized ginger candy to nibble on, apple sauce, Activia vanilla Yogurt, jello, and TONS OF Fluids of your choice. Try Kefir - a drink in the Milk Section of many stores for lots of good probiotics for the gut. Tasty and very mild with lots of great flavors. And last but not least there is something called Magic Mouthwash or some call it Miracal Mouthwash for sensative mouth or sore throat. Wow - I better go now and study the rest of my lines!
Nuff Said, right.
Peace!
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cmbernardi, I should have mentioned that I have had support from my MO's office for all of these things but you gave me some new ideas for the back aches. Interestingly enough, I am on Claritan daily for the rash - its doing double duty! Also, for the blood clot, I thought maybe my vein was hardening but had an ultrasound to confirm the blood clot. They did not prescribe anything but warm compresses and it did go away.
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Wishing everyone the best this week--- easy times in the BGC ( aka the Big Girl Chair) and minimal side effects!!!!
For those who have finished--- The recovery from all of the chemo takes time and will happen for each of you. You may feel some aches and pains post chemo. I know I did; but I just kept moving. If the eyebrows and eyelashes start falling out, try not to fret. It is just their time to go on vacation. As for the head hair, hopefully each of you will start to feel that fuzz soon. Sometimes that fuzz comes in white/grey. Try not to get too upset of the lack of color. Again, give your body some time to get in sync again. As for hair growth, two months after being PFC, I went out to a formal black tie gala without any head covering, hat or wig. It was my coming out to the world and I just held my head high.
If you are taking Tamox post chemo- Remember to check out the BCO section on Tamoxifen and what drugs you should not take with Tamoxifen. Here is the link: http://www.breastcancer.org/treatment/hormonal/serms/tamoxifen . Benedryl is a no no while on Tamoxifen. I use Zyrtec instead which seems to work just fine. I"ve been on the Tamox for about 7 months now and doing fine. Yes, I get those "not so hot" hot flashes but they are doable.
Again, have a wonderful week!!! Thinking of all of you!!!
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Thanks as always, Melrose. I'm headed back to the BGC on Thursday.
My granddaughter, who is such a trooper, went back to school on Friday under strict orders not to carry her backpack. She is taking one of her AP exams tomorrow and one on Friday. We're all still a little on edge until her path report from her 2nd lumpectomy comes back.
Those of you who are moving on, wishing you all the best! Check in with us here now & then and tell us how rads is going for you and give us your best pre-rads tips!
Those of you who are finished with chemo and have a port, how long before your port comes out?
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LET EVERYONE WHO HAS A WIFE/GIRLFRIEND/ DAUGHTER KNOW PLEASE!
PLEASE SHARE..
Bottled water in your car is very dangerous!
On the Ellen show, Sheryl Crow said that this is what caused her
breast cancer. It has been identified as the most common cause
of the high levels of dioxin in breast cancer tissue..
Sheryl Crow’s oncologist told her: women should not drink bottled
water that has been left in a car. The heat reacts with the chemicals
in the plastic of the bottle which releases dioxin into the water.
Dioxin is a toxin increasingly found in breast cancer tissue. So please
be careful and do not drink bottled water that has been left in a car.
Pass this on to all the women in your life. This information is the kind
we need to know that just might save us! Use a stainless steel canteen
or a glass bottle instead of plastic!
This information is also being circulated at Walter Reed Army Medical
Center … No plastic containers in microwaves. No plastic water
bottles in freezers. No plastic wrap in microwaves.
Dioxin chemical causes cancer, especially breast cancer. Dioxins are highly poisonous to cells in our bodies. Don’t freeze plastic bottles with water
in them as this releases dioxins from the plastic. Recently the Wellness
Program Manager at Castle Hospital , was on a TV program to explain
this health hazard.
He talked about dioxins and how bad they are for us. He said that we
should not be heating food in the microwave using plastic containers…..
This especially applies to foods that contain fat.
He said that the combination of fat, high heat and plastic releases dioxin
into the food.
Instead, he recommends using glass, such as Pyrex or ceramiccontainers
for heating food… You get the same result, but without the dioxin.. So,
such things as TV dinners, instant soups, etc., should be removed from
their containers and heated in something else.
Paper isn’t bad but you don’t know what is in the paper. It’s safer to
use tempered glass, such as Pyrex, etc.
He reminded us that a while ago some of the fast food restaurants
moved away from the styrene foam containers to paper. The dioxin
problem is one of the reasons….
Also, he pointed out that plastic wrap, such as Cling film, is just as
dangerous when placed over foods to be cooked in the microwave.
As the food is nuked, the high heat causes poisonous toxins to actually
melt out of the plastic wrap and drip into the food. Cover food with
a paper towel instead.
This is an article that should be share to anyone important in your life! These facts have been known for a great amount of time and ignored or denyed, JUST like THE IDIOTS THAT IGNORE GLOBAL WARMING! -
AnnieLane- I just had my port removed two weeks ago. My onco told me I could have it removed after I finished Herceptin. Three weeks after my final Herceptin, I had day surgery to have it removed by my breast surgeon. He is the one who installed it. That port was placed March 2012 so it had been in there over a year (which explains the reason for the day surgery). Your onco is the one who will tell you when you can have it removed. When I talked to the breast surgeon's assistant, she told me that some women don't want it removed. However, she said it was better to get it out as soon as I could since one can get infections in the port plus one also has to have it flushed regularly if the chemo is finished and one is not receiving Herceptin. I know most of you are not receiving; Herceptin infusions start with chemo and continue for one year. As for having day surgery, I was knocked out when the port was removed and glad I was. If you are wondering what happens to that removed port; it is incinerated. I know some gals ask for it but not me. Glad I had it and glad it has been removed.
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I can't imagine keeping my port! But I get it. Sort of. I can only imagine where one keeps their old port. In the top dresser drawer with the kiddos baby teeth? Oh, wait. I kept my teeth that were pulled for my braces. And my husband had me keep the kids umbilical cord nub. I got my port taken out three months after chemo, when I had a breast recon revision. I wanted my PS to take it out so I could have a better looking scar. No port this time.
I had my husband shave my head Saturday. It was getting gross, all that hair coming out. It hurts to have hair fall out! I have lots of little irritated bumps on my scalp. Can't wait for those to go away. -
cider8-Hope that head pain from the hair fall out ends very very soon!!! As for those bumps, I remember having those. Definitely no fun. I used some Neutrogena T-Gel shampoo for a while to help with the bumps. As soon as the bumps went away, I went back to using Aveeno Baby Conditioning Shampoo. Hope you are feeling okay.... hugs.
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Hi all,
I got my first round of TC last Friday. I have been doing ok, tired, but minimal nausea, and food still tastes good. But, ugh, how my body aches. I have muscle and joint pain from head to toe, even my teeth hurt. I did not get a nuelesta shot. I didn't see much talk of aches and pains from others. Did anyone experience this effect? -
kaybee13- Those muscle aches/pains and joint pain are just those side effects from our chemo regimen. You may want to call your onco and see if you can take an OTC med like Tylenol or Advil. Don't be afraid to call to get some help from your onco; he/she want to help you.
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I'm sure this has been addressed somewhere in this thread at some point but of course now I can't find it... Did anyone else have menstrual issues during treatment? I am on day 9 of my period, spent a night in the ER over the weekend because it was so heavy... It's slowed down (with the help of meds) but I can't help but think I am just going to bleed forever & ever & it will never stop!! It's not like a normal period at all & it's all fresh blood STILL. Anyone else have this experience??? What can I expect now???
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indenial- Not sure I can help you with the period issue. Sorry. I had one period a few days after my first round of chemo and none since then. I'm in my late 50's and was having regular periods when I was diagnosed in 2012. I went into chemopause and now in menopause. As for you, you might to call your onco today to address this issue. Keep us posted.
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I had the horrible aches! I took ibuprofen but wanted to take Percocet. Next round I'm asking ahead of time if I can take the Percocet.
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Kaybee13, my MO told me that Taxotere can cause severe bone pain. I'm just fortunate that I haven't experienced much of that. Sorry you're going through it.
Indenial, my experience with my menstrual cycle was much like Melrose's. At 57, I've been late to experience menopause. I had a period between my first and second infusions and none since, but it hasn't been that long.
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Kaybee13- Here is a link to the chemocare.com website that lists the side effects for Cytoxan and Taxotere. Hope it helps explain a little better the side effects. http://chemocare.com/chemotherapy/drug-info/default.aspx . Of course, you can also go to the BCO.org main website to find more info about our chemo regimen. Wishing you the best.
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I had my period 3 times during my first 6 weeks of treatment. The 2nd time was my heaviest period ever but that only lasted a day. The 3rd period was pretty light. My MO told me my period will probably come back after chemo. I am 45 and my period has been every 28 days like clockwork for the last few years.
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I'm only 30. I will be (reluctantly) happy if I can keep my period as it might give me hope of having more kids... but I'm kind of worried about bleeding to death in the meantime! It has actually lightened up a lot but is still bright red which concerns me. Sorry for the TMI. Couldn't get a hold of my MO today...
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indenial- the Taxotere/Cytoxan can suppress your all of your blood component counts: this includes- white blood cells that prevent infection (more common) , and less commonly- red blood cells that carry oxygen (why you get pale, fatigued and short of breath, although the drugs can make you feel that way even if your red blood cells aren't low) and the platelets that clot blood. This starts happening on day 2 after chemo and counts are their lowest in the nadir (a word that means lowest point) 7-10 days after treatment. Our bodies get to work replacing those cells quickly so that's why are blood counts are back to normal in 3 weeks just in time for another chemo tx, but why also you MO checks your blood work before OK'ing your next treatment. Chemo works by killing the fast growing cells in your body- that includes the cancer cells, but the side effects are that other fast growing cells in your body get harmed as well (like the cells in your mouth and gut, hair and blood cells as examples) You were very right to seek medical attention for a prolonged bright red flow. Your MO needs to know if you are having severe symptoms of any kind so he/she can treat it.
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Indenial: I started my period 1 week after my first treatment and it lasted for 19 days. It was really heavy the first 11 days or so. Extremely heavy but then tapered off by day 19. That was the last time I had it. I'm on my way to treatment 5 soon. I haven't missed it at all! I hope you get to enjoy the greatest perk from having chemo.
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TMM -- I didn't think about nadir & clotting, that makes sense... maybe that's why it got so much worse after getting the last round, right around 2 days after actually.
LW -- I am SOOO glad I'm not the only one, I was getting worried! I hope this is just the 'last hurrah' or something. It looks like it may be slowing down, tonight is the first that I haven't had to take meds for it, though I have them on standby if the bleeding picks up again. The ER doc mentioned I should talk to my MO about Lupron but maybe it won't be necessary. (Also I thought Lupron shuts down the ovaries? And I'm almost positive I did not ovulate this cycle but still have the worst period ever so I'm not sure how Lupron would help in this case...)
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Indenial, I'm sorry you are going through any of this at your age. Thirty is way to young for BC
Praying for the best possible outcome for you and that you'll be able to have more kids when this is all over. A friend of mine recently sent me a picture of her "little sister" family. Her little sister went through chemo in her early twenties and went on to have three beautiful children.Speaking of way too young, we are reeling after learning that my granddaughter had one margin that was not clear after her 2nd lumpectomy, which means a third surgery. This raises all kinds of hard questions for my daughter and son-in-law. Do they stick with the same surgeon or consult with someone else? How many times do you put a teenager through lumpectomy before you consider mastectomy and reconstruction? This is so very hard. Phyllodes tumors are so rare and almost unheard of at her age that there aren't a lot of doctors with much experience with them, although this surgeon has had another teen patient with one.
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AnnieLane- My heart is just breaking reading about what your sweet granddaughter is having to go through. I'm sure that your granddaughter, daughter and son in law will make the best decision for your granddaughter. Hope you are taking good care of yourself. I know you are worried. Sending many many hugs and positive calming and healing prayers, thoughts and energy to you and yours.
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Hi there, I am currently having my 4th and last chemo on Thursday. I noticed in your blog you mentioned eyebrows and eyelashes. Im actually surprised I havent lost all mine yet, but it sounds as if I still might. Do they continue to fall out post chemo or did I luck out on that one. So far I still also have stubble on my head but no hair anywhere else...
This blog has been great for me and I know it has made all of us stronger.
Nancy
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Hi Milo, I am almost 3 weeks post my last TC. Lashes and brows have thinned considerable- about 50% gone, but I am not seeing any further loss- knock wood. I've been letting my shaved head grow since the beginning of April. I have about 1/4- 1/2 of gray hair growth all over (longer on top and sides than forehead and back- where it rubbed on my pillow and headcovers?) . I just noticed last week that I have some very short stubble starting to come in on my legs. Hopefully, Spring has Sprung and so has my new hair growth! I still really love that avatar picture of you rockin' that newsboy cap!
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Hello All - At just about 52 years old. I stopped getting my period after my first T/C infusion and it has never returned. But now that I am done with Chemo/Neulasta and headed to RADS next month - who knows???????
I do know this however:, I am writing this post from the Flower Mound Presbyterian Hospital while getting 2 units of blood transfused as my MO told me yesterday I am anemic. I went to see him under duress though because the first thing that happened on Saturday when I was planting my Sister's garden I tripped in a large whole and BROKE my left foot. Now finally, as the trifecta to the bad news, I had an hour long ultrasound of my left broken foot's LEG to rule out a blood clot. OH LORD, can things get any worse. YES - they can - I cannot use the crutches they gave ne in the ER to save my life! Ugggggg! And to make matter worse, I drive a new Jeta stick shift which will not accomodate a broken left foot. So, I guess I will be looking for rides!
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I am sending virtual (((hugs))) to you, Carolyn. I just can't believe what has happened to you! Not fair!
Also sending prayers for your granddaughter, AnnieLane. It is completely not fair for that to happen to such a young girl!
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I'm almost two weeks out from final treatment and still have a great set of lashes, but my eyebrow on one side is pretty thin. Not sure if I want one eyebrow vs none. Praying my eyelashes hang on!
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@ melody46
I finished 4 treatments of 4 T/C and Nuelasta shots and my eyebrows are still intact and threaded beautifully (because I got them threaded 4 weeks ago) and they are still arched beautifully.
And just in case you did not ALL read my 3:30pm Post - yes, something else CAN go wrong in this trifecta of bad luck. I drive a new Jetta and it is a stick shift. So I'm gonna be looking for rides. Mama Mia!
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The last hurrah! I like that! I wouldn't mind if mine never came back!
Is anyone else experiencing pain in their fingers? Both of my thumb nails are getting darker, they look like they've been hit with a hammer and the finger pads are so sore. It really hurts to put any pressure on them. I know loosing fingernails can be a SE but it feels like I'm going to loose the whole last joint of my thumb! -
Will have my 3rd out of 4 cycles of TC tom.... I was really achy and tired after the 1st maybe from the neulasta shot... I dint get the shot after the 2nd cycle but my WBC sent down to 2.3 so my MO said he will give the shot to me this time. Im very anxious and anyicipating the possible sideeffects of chemo and neulasta... During the 2nd cycle while taxotere was infusing I felt so warm/flushed and short of breath... It was stopped and I was given benadryl IV and restarted the taxotere after 30 minutes. It was kinda scary... So now thats making me nervous.... I dont know what supplements to take before chemo to minimize the sideeffects... I also read that neulasta can enlarge the spleen and it could rupture and cause death. Im not trying to scare anyone but its good to know the possible sideeffects so we can report to our doctor if we start feeling some left upper abdominal pain.... To those of you who are done with chemo, im so happy for you and congratulations you made it.. Good luck and god bless... To us who are still going through chemo, i pray gor more strength and courage and no major side effects... God Bless us all 🙏🙏🙏
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Milo5- Glad to hear that your eyelashes/eyebrows have hung in there!!! The eyelashes and eyebrows may start falling out after you finish your 4th round of chemo so don't be too shocked by the fall out. My eyebrows and bottom eyelashes started to fall out after Round 4 and were gone right after Round 6. My top lashes never left and are still here; I'm 9 months PFC). The eyelashes and eyebrows are on a different growth cycle than the head hair and can fall out and grow back several times during the first year of post chemo. Try not to get too upset with lack of eyebrows and eyelashes; your body has to recover and get back in sync after chemo. Some gals use eyelash/eyebrow growth serums. I also had a prescription for Latisse but never filled it. I was tempted to use the serum or Latisse but decided it was more $$$ than I wanted to spend and decided to wait and see what happened. As for the rest of the body hair ( arm hair, leg hair, nose and down south), that hair will start to come back a few weeks after being PFC. (My arm pit hair has not returned though.) As for the head hair, that hair can't come back fast enough. I had that duck fuzz grey/white phase and then my regular head hair started to return. It seems to grow faster on the sides than the hair on the top of my head ( male balding pattern). I have been using Nioxin shampoo ever since I finished chemo. I always put a little of the suds on my eyebrows. Do I think that shampoo works; who knows. I just like the smell of it so I keep using it. Please try to be easy and patient with yourself after you finish chemo. It just takes time to recover.
LW0919- Sorry to hear about the nails. I had occasional pain in my fingers/hands. I also got finger cramps too ( aka trigger finger) when I held things a certain way. I usually just used my other hand fingers to uncramp my crampy fingers.
cmbernardi- Wowsers!!! Hope you feel better soon!!!
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misshopeful- Wishing you the best tomorrow with 3rd infusion!!! As for the Taxotere part of the infusion, just make sure you remind the infusion staff that you have had a reaction to the Taxotere during Round 2. Let them know what happened. Yes, I know it is probably written down in your records but better to tell them again. I did not take any supplements or vitamins when I was having chemo and still don't take any now. My onco and I agreed that I would get whatever nutrients I need by eating a healthy well balanced diet. I'm one of those people who doesn't like to take any extra meds/supplements unless I absolutely have to. As for the Neulasta shot, I took regular 24 hour Claritin beginning the morning that I would receive my afternoon shot of Neulasta and continued to take it for 8 more days. I was fortunate that I did not experience the bone pain from that shot. However, I did have occasional muscle aches and joint pain which is a side effect of our chemo. I also had my Neulasta shot given to me in my tummy fat rather than in my arm. You will get through all of this.
Wishing everyone easy times in the Big Girl Chair and minimal side effects. Sending out many many hugs to all of you and positive calming and healing prayers, thoughts and energy!!!!
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Carolyn, oh my goodness Girl! I am so, so sorry to hear of all you've been through just when you thought you could celebrate finishing chemo and your birth month!! You will be in my thoughts and prayers. I think you are going to have to pick another month this year and declare it your unbirthmonth and celebrate when all this is behind you. Maybe when you're through with rads? My mother was buried on my birthday in 2010. My mother-in-law had triple bipass on by birthday in 2011. This year I will be in the dog days after my last chemo infusion on my Bday. I'm ready to pick a new Bday myself!
Thanks for your thoughts and prayers for my granddaughter, everyone. On Monday, my daughter & son-in-law will be taking her for a consultation with an oncology surgeon at Baylor Med Center in Dallas. They live north of Dallas. I feel so much better about this than having her go under the knife a third time with the same surgeon. Not that I feel good about any of it, but this give me more hope that her third surgery, whatever kind it is, will be her last at least for many years to come.
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Great advice....I actually had my eyebrows tattoed before chemo started by a friend, who will also tatoo my new nipples eventually, so im not to worried. i also have about 1/2 inch of hair, gray, mre on top than sides. Im 52 but and surgically postmenpausal after ovaries were removed (one 10 years ago and other one last june) .
Have axillary lymph node dissection (11 nodes) with double mastectomy and having some, not sure how serious, lymphedema, and now wearing arm sleeve and hand (glove) sleeve, which I HATE... Uncomfortable, embarassing, inconviencent....
anyone have any thoughts, experience, advice on this...... Weird but this is the thing I am MOST bummed about....
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Indenial--I had my period about 5 days after 1st TC. Again heavy period started a day after 2nd chemo and lasted 8days. My Dr. says chemo tend to interfere with mentsral cycle and refered for ultra sound to eliminate other issues. I am not sure if Lupron would help, it was recommended by MO but I was not given. My 3rd chemo is next week and I just have to see what happens. Best of luck to you.
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Milo5, I had the eyebrows tattoed pre-chemo also along with upper eyeliner. For anyone who has time to do this and heal up before chemo, I recommend it - if you can have it done by someone you KNOW does good work. I'm sorry to hear you're having the lymphodema. I can understand being so bummed about it, because it's one of the things you worry that you might have to deal with for life. All I've heard about it is to get medical attention and therapy for it sooner rather than later and to be very pro-active about it.
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Milo5- So sorry to hear about the LE. Check out the LE Discussion forum here because there are great ladies who know the latest. You can also check out the Step Up-Speak Out website about lymphedma. Here is the link: http://www.stepup-speakout.org/ . Hopefully you are getting PT to help teach you what exercises to do and how to help you take care of that arm. The Step up-Speak Out has info how to find a qualified LE physical therapist. You may also need to get a referral from your onco or breast surgeon to get more PT and to learn exercises to help with the LE. Don't wait too long to get some help. I don't have LE but since I had nodes removed, I've learned that one is always at risk. So I wear an off the shelf Jobst sleeve and hand gauntlet when I fly or change elevations. Yes, one needs to wear both since just wearing the sleeve alone can cause LE. I know how uncomfortable the sleeve and gauntlet are; however, I'd rather wear them than risk developing LE. Hope you feel better soon!!!
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Hi Everybody, I went to the Dr. today and he's having me go in for an ultrasound on Friday due to pain I've been having in my breast. Its the side w/ lymph and tumor surgery. Has anyone else been experiencing pain in their surgery breast since starting chemo? Really like some feedback plz. I've actually been having pain in my ribs on that side too but that was going on before chemo.
On the plus side I was surprised to hear from him that I shouldn't lose my lashes or eyebrows. I thought that was strange but he said the CT cocktail shouldn't cause it. My eyebrows have thinned out though but eyelashes hanging strong.
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I have been reading all of your posts here and have gotten some great advise. Thank you! I had my first TC treatment on April 29th. I did okay but really did not feel well until 1 week after my treatment. I went to see my oncologist yesterday and he is reducing my steroids for the next round and will give me saline for 2 to 3 days after it as well. Can anyone tell me what the saline will do to help? Do any of you get saline routinely in this manner?
My worst problem has been clenching, terrible pain in my stomach with no let up. This did not stop until 1 week after as well. If anyone has any suggestions to help me with that I would really appreciate it.
Thank you for all of your help and suggestions. -
I think the saline will help you stay better hydrated. The more liquids you can get in (via drinking or IV!), the better you should feel. I think it is "normal" to feel yucky for the first 1-2 weeks after treatment.
I have been getting a similar pain in my stomach. Sometimes antacids (TUMS) seem to help for some reason, though I can't figure out why!
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AnnieLane et al,
I am having a bit of a time of it but I will survive. Thank goodness, no blood clot in the leg, got transfused with 2 units of blood and then fluids so feeling a little better. Broken foot is still quite swolllen but cannot get on an Ortho doc's schedule until Monday! Funny tho, my Mom is having fun driving my stick shift. She seems very proud of herself! And yes, I LOVE the idea of extending the Birthday Month. No one would DARE deny me that!
Also - AnnieLane - I had my surgery at Baylor Grapevine just outside of Dallas with Dr Clifford. He was a wizard! Hugs and prayers to you all too!
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Stomach pains come from the chemo hitting that part of the body. Those particular cells in the body can become irritated from the chemo and your tummy just feels acidy as the chemo circulates through the body. As to getting that heartburn/tummy ache/acid feeling under control, call your onco as ask if it is okay to take some OTC anti acid meds ( Prilosec, Tums, Zantac). I had that acidy tummy feeling after the first round of chemo and was given the okay to take some OTC meds. Fortunately, that not wonderful tummy feeling was better after that first round and I didn't take anything. I will also tell you that I made an effort to eat bland the few days after getting chemo ( like potatoes, mac n cheese, baked chicken, baked fish --- aka my white meals).
As for the saline post chemo, I know that it helped some of my gal pals to get those IV fluids a few days after the chemo round. The ones who got the IV fluids said they felt much better. One does need to hydrate well before and after having the chemo round for a few days.
Hope everyone is feeling okay. The weekend is coming up and rest if you can!!!
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I have experienced some of the worst stomach/intestinal cramps of my life since starting chemo. I think it's just plain hard on your whole digestive/GI tract.
And I've only recently begun to notice some occaisional sharp pains in the tumor/lumpectomy breast, nothing unbearable in my case, but I'll mention it to my MO when I see him before my infusion tomorrow.
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I had infusion #2 today. I don't have a port and I can't use one arm due to ALND. I had to be stuck 4 times to get a good vein! Bleh. It does sound like my doctor thinks I will need 4 vs 6 infusions, but that is based on how I respond. (IBC is a beast treated a bit differently).
All in all, it was a good day. I had lots of company after getting home from chemo, and it was OK. My sister, who took me to chemo, had to stay because she had a work meeting in the evening near my house (she lives 30 min away). My 9 yo went home with a friend after school. The mom is my good friend and brought my daughter home to me, especially so her daughters could see our kittens. And then, my very dear friend is in town from Germany for work. I haven't seen her in 2 years and it is so fabulous to see her. I couldn't help sobbing a bit when I saw and hugged her! So, a bit of a crazy evening, but so very wonderful.
Oh, yes. The kittens. A week before I started chemo my rescue cat had kittens. I rescued her from a friend who lives in a rural area. What I didn't know is that she was pregnant! Counting back, she must have gotten pregnant 1-2 weeks before I got her, so none of us would have known. The vet and I suspected 3 kittens, but they kept coming. 5 kittens! At 4 weeks now we can see their personalities and they are gorgeous. I think we are keeping one, but hubby and the girls want to keep three! I love cats, but NO. I think we will back it down to one once I remind hubby of the financial cost of fixing and vaccinating! For now, they are nursing. Once they are weaned, it's time for them to go! It's been an awesome experience and distraction for my daughters, 12 and 9. I think the timing is wonderful. -
Oh yeah. My MO and her nurse gave me the what for because I didn't call in my SE's when I should have. I had a 100.4 fever on day 7 I think. They both said I know you've been through this before but you must call when you have these symptoms. Ok, Ok. I will do better this round. I also should have called when my pain was so bad I wanted to take some Percocet. I can take it if I need it! My MO said at least it will give you good sleep!
I also got a little cold from my daughter. My MO wants me to take a z-pack. She said yes, it's probably overkill, but this is my second time in chemo and she wants to take no chances. I can also take Mucinex to clear out any junk. I seem to have chest junk when I cough. And I need to take throat drops because sometimes I have a spazzy cough and really dry throat. I do the salt and baking soda rinse. No mouth sores.
I take Pepcid starting morning of chemo for one week. The give me Benedryl the day of infusion. I have Zofran on hand for nausea, but I did not need it first round. I am not getting steroids and I seem just fine. I take the generic Target Claritin for one week. Aaaaaaand I got my Zoladex shot today. My MO forgot to tell me to stop the Tamoxifen! Didn't hurt anything. But she's going to switch me to an aromatase inhibitor after treatment is done (surgery and rads to go for sure). I'd rather stay on Tamoxifen!! -
Good Morning All,
So sorry to read all the previous posts chock full of SE's and generally uncomfortable tummy problems. As a Registered Dietitian, I often rely of the Lifeway Kefir liquid drinks which can be found with the milk and other dairy products. The beverage contains 11 or more probiotics to repopulate the Gut with friendly flora. Check out their web page and get a few coupons too. MOST of the flavors are lactose - free. Here in North Texas, I buy the Kefir in Sprouts market, but I have seen it in Tom Thumb and possibly Whole Foods carries it. It is like a smoothie in flavor and thickness and and can actually be used as a meal replacement for the days that your tum tum is sensitive. Remember it is called Lifeway Kefir and in addition to the beverages they have other products like yogurt. I Love Them all. Good luck all and please say a prayer or send some good karma my way today. My broken left foot (at the 5th metatarsal) is highly swollen and now my seemingly good right foot looks like someone stuck a grapefruit in there. I am sitting in bed with feet propped on as many pillows as I can find but as soon as the MO office opens, I will give him a call.
Hugs, Hugs, Hugs and Peace, Luv and Blessings to you all!
Carolyn (aka "Flowers")
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Has anyone had a burned tongue and mouth feeling after infusion? Had it for about the first week and could not taste anything . My first infusion was 4/26 and my next one is 5/17. I would love some advice on what might help. I didn't want to eat anything and everything tasted funny. Also my oncology nurse said I have hand and foot syndrome. Any hints on relief? She said to take an antihistamine and put hydrcortisone on it until the small blisters clear up on my hands.
I am so happy to have found this board ! It is so nice to be able to read, learn and ask questions! Thank you all!!! -
Mamy, yes I have had that burned mouth feeling a few days after each infusion. I rinse with warm water, salt and baking soda a few times a day which seems to sooth it temporarily. I can't taste most foods and even water taste gross. Lemonade seems to be tolerable. It does go away eventually.
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Yes I get that burned feeling too. I haven't found anything that really helps but ice cream soothes it. I also found mint tea to be the one liquid I didn't mind drinking. Oh and this time around I took TUMS for stomach & acid issues and I think that made the mouth soreness less severe too.
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Mamy- Here is a recipe for the baking soda + salt rinse
---- 1/4 teaspoon baking soda + 1/4 teaspoon salt + 1 cup of warm water
Rinse several times a day and make a fresh cup every time you rinse.
Your taste buds can go on vacation a few days after the infusion. As for me, I could taste things okay for the first few days and then for about 7-10 days, things just tasted blah and then the week before the next round ( aka the good week), I could taste everything. I was given this book called "Eating Well Through Cancer' by Holly Clegg and Gerald Miletello. MD. It has recipes, tips, food lists, menus and is divided into chapters by side effects. That book made it easy for me to figure out what to eat when and not have to think about it or get on the internet to do research. I also bought the book "The Cancer Fighting Kitchen" by Rebecca Katz. it has great recipes and great pictures. You can probably look at this books and order them on Amazon. I know the eating can be difficult during treatment. I may look at eating a little different than some. I ate for nutritional value and help fuel/repair my body and not as a comfort. Do yourself a favor and try to not eat your favorite foods while on chemo if you are wanting those foods to be your favorites when you are finished with chemo. I usually ate what I called my white foods- mashed potatoes, baked potatoes, mac n cheese, baked chicken, baked fish. Yes, a bland diet to begin with but edible. I know drinking water gets to be boring after a while. You can get fluids in by eating watermelon, grapes, jello and drinking gatorade, adding fruit to your water. I used to add orange slices to my water and drank ice cold ginger ale a lot.
As for hand foot syndrome, here is the BCO.org website link: http://www.breastcancer.org/treatment/side_effects/hand_foot_synd . Hope this helps you. If you have more questions, please ask. We are here to help!!!
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Mamy, you'll get the best advice from Melrose.
My approach to eating is a little different though. I'm eating more red meat than I usually do, but I haven't pushed myself to eat healthy foods if they don't appeal to me. After my first treatment I ate spinach a lot. Now I can't stand the thought of it and I've always liked it. When chemo is over for me, I want to spend the rest of my life eating healthy (which normally for me does not include much red meat) and I don't want to develop aversions to healthy foods that I ate a lot before chemo and want to go back to eating and liking: fruits, veggies, quinoa, beans, oatmeal, etc. So I am relying on supplements quite a bit. Also I discovered that my GI tract can't handle high fiber food very well right now, so I get my fiber from Miralax.
I just had my fourth treatment today and I have found that food starts to taste more normal after about two weeks.
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i had my first infusion tuesday and my mouth has that burnt feeling.
Is anyone going thru chemo without neulasta or another shot to help the white blood count come back. My oncologist wants to see how i make out without the neulasta and I feel terrified about what can happen. Has anyone else gone thru this???"
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Worrywart (love that screen name, I could have the same one lol!!) I do not get Neulasta. My counts dip very very low but my onc just warns me to wash my hands often and call if I get a fever and things like that. I'm on round 2 & haven't caught anything or needed antibiotics or anything like that this round or last... and this despite spending a LOT of time around young germy kids!!
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in denial, thank you for the feedback...I (as my name says lol) have been so worried. Ok does you oncologist check you?? they told me my counts would be lowest days 9 or 10 and just watch for symptoms of infection. I am not scheduled to go back till my next infusion May 28th. I will keep extra hand sanitizer everywhere I go. Thank you - It feels so much better knowing that someone else got thru it ok.
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I did not have a neulasta shot on the first round but my counts dipped very low and I had to have it with the next three. I developed a small fever around 100 but it went away the next day. Just make sure to stay away from sick people and places where there are alot of germs day 5-12 and keep your hands clean. Your MO isn't seeing you during the 9-10day period for a blood draw?
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The first round I had 3 blood draws (I think it was days 10, 15, and 20?) Days 10 & 15 were very very low but by day 20 they had gone up enough to have round #2. I saw my MO a few days before chemo (because I don't see him the day of chemo) to discuss round 1 side effects & make sure I was well enough for round 2. Now I don't need to get the blood draws anymore -- he said we will just assume my counts are low and take precautions, so I will only get the pre-chemo blood draw (and short visit with him a few days before) to make sure they've gone up enough for the next round. He doesn't monitor me for infection or anything like that. The low WBC makes you more susceptible to illness but in & of itself, it doesn't make you sick. Avoid sick people, wash hands frequently, wash foods & veggies and make sure meat/fish is cooked thoroughly. I also used a new toothbrush, avoided sharing nail clippers or razors with anyone in my family, things like that. I read that some people's WBC stays low even with the Neulasta actually.
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Worrywart- I understand your concern about not getting the Neulasta shot after the first round of chemo. My onco as well as the oncology pharmacist explained to me that the Neulasta shot would be administered only after I demonstrated a need to receive the shot. This meant that until my white blood counts dipped too low or I had experienced an infection or high fever, I would not receive that shot. After round 2, at the end of the nadir period, I developed a high spikey fever and chills. My onco prescribed two antibotics over the phone and kept me out of the ER. It was made clear to me that I would be receiving Neulasta shots after Rounds 3-6. The wait and see approach is fine. You aren't missing anything by not having the shot after the first round. FYI: The Neulasta shot is very expensive which may explain the reason for not automatically administering it to every patient. I had blood drawn the day I received my chemo round to determine if my counts were good enough to receive the chemo. I had an onco appt after the blood draw and before the chemo was administered.
Yes, I did turn into a little germophob but it's okay. As everyone told you, wash your hands. Don't share food/drinks with anyone. Brush your teeth several times a day ( usually after you eat) . Be careful flossing your teeth since your gums may be tender. As for the toothbrush, have extra ones so you can put the used ones in the dishwasher. I have toothbrush sanitizer which helps. I did not use my Sonicare electric toothbrush while having chemo because the brush action can cause microabrasions on your gums. I initiated the elbow bump as an alternative to the hand shaking and hugging.
If you are wondering if I stayed confined to my house, the answer is no. I would have gone absolutely stir crazy if I had. I often went shopping such as Target , grocery store and places where I knew there would not be a lot of people. I found walking around Target as a form of retail therapy and exercise. If there were some sick adults or little kids coughing or obviously sick, I avoided where they were. I did go out to eat to places that I knew were clean places and had eaten there before.
As far as eating, I used to eat 5-6 small meals everyday. That way my tummy was never empty and never totally full. A fed tummy is a happy tummy while on chemo. I kept a drug and food diary so I could keep track of what I ate when and how I felt afterwards and also to make sure I took my anti nausea meds on a schedule. I did eat a lot of protein and other certain foods to help keep my red blood counts from falling too low. I did not take any supplements or vitamins or iron pills while on chemo since my onco said she preferred that I try to eat the necessary foods rather than take supplements. Did that work.... YES, it did. I have to tell you that having to keep track of what I ate, helped keep my mind off of the chemo itself. It was a great distraction and also made me feel that I was in control over part of my body. To me, food is like a medication since the right foods can help one feel good.
Again, if you have questions, please post. Happy to help you. I am 9 months PFC and know how hard each of you work everyday to get through your time in chemoland. HUGS!!!! You , gals are not thinking you can do this, YOU ARE DOING THIS!!!!
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Melody, InDenial and Melrose - I got my blood drawn day of chemo, then to oncologist, then to get chemo. (All in same building - Columbia Presbyterian) If all goes well, that is also the plan for 2nd infusion. They have no planned blood work in between. I will take all of your advise and be very careful with washing my hands, brushing my teeth, etc.
I am hoping for the best and thankful for being able to have help from my wonderful "sisters" on this site. Thank you so much, it makes it so much easier. No one else really understands some of the fears, thoughts, etc.
Hoping that everyone has a great day and minimal side effects.
xoxo
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Hi everyone,
I have posted on the "over 60" thread about my mom but today had the first MO visit, and CT treatment is recommended. We are going back in a week to determine if moving forward with it. Is anyone "older" on this thread or have other health issues and been through it?
My mom had a stroke last June. She is 73 and, before the stroke, was fully independent- tennis, babysitting, bike-riding, etc. Now, I am her live-in caregiver. She walks with assistance and has difficulty communicating/speaking but is able to understand us more and more. She goes to physical, occupational and speech therapy. She had a lumpectomy in April and is triple negative. The MO said his biggest concern is her being able to communicate how she feels. Abstract things are difficult to explain- like, numbness and tingling. So, even today, we had a hard time getting a clear answer on if she has any now. A couple months ago, I think one medicine gave her some tingling because I would catch her looking at her hand and turning it over to look at the other side. She had never done that before. Dizzy and nauseous I've been able to communicate through gestures but who knows what she might be feeling with CT and not be able to tell us...
She has really thick hair that all her shower aides have complimented her on. I know she really identifies with it. I also know that her sister will lecture me on putting my mom through this if we decide to do it. Her sister (whose son died of cancer) thought getting a biopsy was a bad idea- "that some people just live with it." I drew pictures for my mom for her to choose lumpectomy/mastectomy. I will certainly talk to my mom more about it but ultimately my brother and I will be deciding/influencing.
My fear of course is if one of the rare side effects happens or some terrible infection or complication. On one hand, she is just getting back on a consistent therapy schedule after some medication side effect issues so it is difficult to think about another detour, and we have been looking forward to enjoying summer activities and taking a trip. On the other hand, I know that chemo is her best defense for the future. The MO said some people choose quality of life and skip chemo (though he says it will be beneficial and recommends it for mom.) I should've asked- that's a few months quality of life, right?
Sorry for the long post. Any comments?
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Regbeach, can you get a second MO opinion?
My breast surgeon was of the opinion that chemo was advisable for me because, as he put it, "At 57, you're much better able to withstand it than you would be at 77." Not sure if my MO would have said that. He just thought I needed it, but then that's what MOs do.
I would be very concerned about your mother's other health issues and difficulty communicating. For me getting through my first four treatments on this regimen has involved a lot of attention to my SE's and a lot of pro-active self care.
Peripheral neuropathy in her feet could be a major problem at your mom's age.
My heart goes out to you. I lost my mom to Lou Gehrigs disease three years ago. She was 77.
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A query for those of you doing 6 treatments. What were the deciding factors to do 6 vs 4?
My MO has said from the start that "6 is better than 4," but he hasn't really pushed it or tried to make a strong case for it. Today he talked as if it was my decision, but he still thinks 6 would be best. I've tolerated the first 3 pretty well and today was #4, but I'm wondering if I really need 6. I'm thinking about stopping at 5.
I will be doing rads and either Tamox or an AI eventually. May consider having my ovaries removed too.
My oncotype DX number was 21 and I was peri-menopausal going into this at the age of 57. The rest of my DX is in my signature. I know there's even an older thread about this and I've looked at it, but wanted to poll those of you here who are doing or have done 6 CT treatments.
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I have the exact same question. I was told I would do 4-6 courses depending on how I tolerated it. Since I have only completed 1 treatment I have not questioned my Dr. about it again, but I do wonder and will readdress it with him. I have not been able to find any information on the benefits for 6 versus 4. I am triple negative and I thought that might be why. Any information would be appreciated. Thanks.
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Goldie1431 I do think being triple negative makes chemo a more critical piece of your treatment plan since you won't be able to fight the possibility of recurrence with hormone therapy.
But let's keep asking the question. Why and when are 6 CT treatments better than 4?
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Hi -I had my first treatment 4 days ago and have had a surprisingly easy time with the SEs. A little nausea, a little diarrhea, and some fatigue so far and that's it. I will have three more treatments. My question: do the SEs get worse with each treatment? I am planning a trip cross country 3 days after my 3rd treatment and wonder how feasible this is. Any advice?
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i am borderline triple negative er- pr+ (5%) and her2- i am getting 4 treatments, not sure why!!!!!!!!!!
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I'm thinking about stopping at four. Although I've tolerated them fairly well, I'm now asking the question, just because I could tolerate six, does that really mean I should do six? Would it really improve my prognosis with my particular diagnosis stats? I've had no second thoughs about opting to do chemo, but see a lot of gals with diagnosis similar to mine who are doing four. This may mean a hard conversation with my MO, but I think we can both handle that.
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Donabelle, I think that trip could be pretty hard with that timing. The side effects are cumulative. Would this be a road trip? If you go back a few pages you'll find that someone else (Runnermom, I believe) raised that question and got a lot of good feedback, although she was going to be flying.
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Donnabelle- If you are planning a trip cross country, talk to your onco about the trip about the specifics of your trip. ( whether you are flying/driving... where you are staying, etc.) I know you have been probably told that the side effects are cumulative. In my situation, I became more fatigued after each round of chemo; my heart rate was became faster and my breath shorter. I also became tired more easily to the point a short walk seemed extremely taxing on me. With that being said, please remember that the time you are travelling is during the period that your white blood counts may be dropping. You want to make sure that you have a back up plan in the event that you become ill while away. I would definitely talk to your onco about what to do in the event you do start not feeling well (high temperature, etc) while away. I don't know if you have had a node biopsy. You also want to talk to your BS and onco about the risk of lymphedema and whether you should wear a sleeve and hand glove/gauntlet when flying or going through high elevations. Please don't think that I am trying to discourage you from travelling; jsut giving you some things to think about.
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I received 6 rounds and not absolutely sure why. At my first appointment with my oncologist, she said that I would most likely have 6 rounds because of the inital pathology from my lumpectomy and the risk factors. After I was told that, I never really questioned the number rounds. Also, I'm a participant in the Herceptin B-47 Clinical Trial and if one is having this chemo regimen, 6 rounds is required under this study. I remember having this same discussion in the March/April Chemo T/C X 4 thread that I was on last year. I don't think we ever really figured out why some got 4 rounds and others got 6.
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Thank you Annie and Melrose for the replies. I had never heard of a sleeve or gauntlet so I will definitely ask about that.
The trip will be a flight with a layover along the way. My team did not seem to worry about me traveling at all. In fact they went out of their way to schedule the treatments around my schedule. Now I'm wondering if I'm crazy to do this.
I will be heading to New Hampshire and there is a small hospital in the next town if I have problems, or Boston is about 2 hours away. It's our annual family trip where I see all my siblings, nieces, nephews, etc. so I don't want to miss it. Maybe it will be bad for me physically, but so good for me emotionally.
Risk vs. reward. So hard to figure out. -
Melrose, back to the 4 vs 6 question, I notice that your staging and grading were a bit higher than mine and you had both a dcis and an idc tumor. I think the biggest factor that weighed into my decision to have chemo at all was my idc tumor size.
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Annie - I am doing 4 rounds and have similar stats (slightly smaller primary tumor but had multiple tumors IDC/DCIS, plus LVI). 6 wasn't even considered. When I "researched" this a few weeks ago, it seemed the conclusion/consensus was that 4 is just as effective as 6 but 6 had more SE's (some of them long-lasting). I feel like I'm doing chemo more as insurance, so 6 would be over-the-top & unnecessary. I suppose 5 would be a good compromise if you can't decide!
Donabelle, I'm only on round 2 so I can't say for sure but... I just can't imagine flying cross-country 3 days post chemo. It just sounds like a recipe for misery. I'm sure it's possible, but maybe not enjoyable? And I am having a relatively easy time with SE's. The SE's are slightly different between first & second round and the fatigue and some other things are worse/cumulative. I'd try to reschedule if you have the option, but you're right, emotional health is just as -- or even MORE -- important than physical. Any chance the family could fly to you instead?
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Its my understanding you get 6 vs 4 due to stage and lymph node involvement. So stage 1 would typically get 4. My MO said theres something to be said for doing sick, but his partner in the office said 4 was enough. Since I had no lymph node involvement and may be doing this for nothing I opted for 4.
Regbeach my paternal gma was over 70 when she was diagnosed and opted to just have radiation. She did not have triple negative though, this would be a tough call, do you have any more info like we have under our posts?
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AnnieLane- There is also another factor that may have impacted my onco's decision for the 6 rounds rather than 4 rounds. My bc (IDC and DCIS) was found inside of a cystic structure. This type of bc accounts for about 1-2% of all bc and is relatively rare. That cyst was aspirated a few days before my lumpectomy and the fluid analysis did not indicate any cancer cells. I had opted to have the cyst removed because of its size. Prior to my lumpectomy, I was told by the breast surgeon who performed the lumpectomy that it could possibly be intracystic bc but it was rare. My pathology report indicated that the ER + (90%), PR - (0%) and HER2 - (+1). (FYI: HER2 scores of +1 and +2 are considered negative in the Herceptin world.)
I met with my oncologist and switched breast surgeons so that all of my care would be handled at one location and one hospital. My case was taken before the hospital tumor board several times and so I know that the decision to have 6 rounds wasn't just a decision made solely by my onco but was discussed and analyzed by a collective of oncologists, a pathologist and my breast surgeon. I was fortunate that I was able the handle the 6 rounds of chemo with minimal side effects.
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Donnabelle- About the LE sleeve and hand gauntlet--- I did some research on the BCO.org main site as well as read on the LE Discussion forum about LE and the risk of developing it after having my SNB. It was only until I was planning a plane trip that I discovered that I might want to get a sleeve and hand gauntlet. I contacted my BS who said that he didn't think I would develop LE because of the low number of nodes removed (5) but he said that if I wanted to be extra cautious, that I could get one. So I went to a qualified LE sleeve fitter and measured and purchased an off the shelf sleeve and hand gauntlet. Yes... you need to have both because merely wearing a sleeve can cause LE. As you are discovering, patients are not told everything. However, the more one educates herself, then one knows what to ask. I know my medical team appreciates my questions because they know I am doing what I can on my end to help the process.
As for missing the family gathering, last spring when I was in chemoland, it was a tough time for me. There are events I missed because I was physically unable to do things and didn't want to risk infection. I missed my son's high school graduation and all of the fun mom events that go along with having a high school senior. It was a trade off I made. He and I both talked about my missing the graduation. In order to keep on schedule with my chemo and avoid any delays in my scheduled rounds, I opted to stay home. It was hard to see him, my husband, and daughter drive away that graduation day but I knew that I wanted to feel well enough at the end of the summer to help him get his things ready to go to college.
Again, you should make plans to go if that is what you want to do. It may give that extra mental and emotional boost to work hard to stay well while in chemoland. You know that you can always opt at the last minute to stay home if you don't feel well enough to travel. Wishing you the best.....
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Had # 3 of 4 on Friday 5/3/13. I am having some new SEs. Thumb nails have a ridge and are sensitive, acid reflux this time (with back pain that I think is from gastro issues), muscle aches, breast pain (the surgerized side), numbing fingers and the chemical mouth seems to be lasting a longer time this round. I realize the chemo is cumulative but geeze! Only 1 more to go.
My onc wanted me to have 6 treatments of ACT +T but the Arydimicin was an issue with me and we discussed it and decided that a 3% potential lower risk was not worth the potential heart issues (we have lots of those in my family and no BC in my family)
I was post-meno prior to diagnosis, so no period issues for me. (I'm 55 and no period since age 40-42).
I did not have neulasta with first infusion. Spiked a temp on day 9 and ended up in hospital for 3 days (low blood pressure sent me to ICU). I got 2 neupogen shots in hosp. 2nd infusion I got a nupogen shot on day 2 and another on day 3. 3rd infusion I got neupogen shot on day 2 only. Not sure what 4th infusion will bring...
I am hopeful that rads will be easier to tolerate.
I am forever grateful for this forum. I love the info I get here, it empowers me and that is priceless. Thank you all.
Hope all have an easy weekend!!
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Melody46,
In response to your question- my mom's tumor was 2.7 cm, Grade 3, triple negative, 0/8 nodes.
One moment I think, the side effects will be manageable, difficult but manageable. The next I read about whoever spiked a temp and ended up in the hospital for 3 days. Yes, that is manageable but it has just been a long year- 3 weeks in hospital after stroke, 5 months in skilled nursing facility for rehab. A couple ER visits for what we learned was post-stroke seizure, then breast cancer. I just need to pray for strength.
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Again, thank you Melrose and indenial. I think that I am going to go ahead and schedule the trip and then make up my mind at the time. I will hope for the best!
Melrose, I can only stand in awe at you making the hard decision to miss your son's graduation. I have my daughter's college grad coming up in June and it didn't cross my mind that I should think about that as well.
It also didn't cross my mind to think of whether 4 or 6 treatments where the best. I am maybe blindly trusting my MO? I did get a second opinion tho, and it was from a different medical group and the recommendation was the same.
So glad I discovered this forum. I am learning a lot. I feel fortunate that my SEs are not bad. Keep up the good fight ladies!
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regbeach there is a forum on here for triple negatives that may be able to give you better info, I'd also get a second opinion, its a grade 3 and over 2cm so I see why they want to treat with chemo. I understand this is also about quality of life, what a tough decision to make. Take your time, do some research and get the second opinion so you feel at peace with what you decide. I'll keep you both in my prayers.
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Donnabelle- You may want to look at your calendar between now and your daughter's graduation so you can have an idea when your last chemo and to see if going works with your treatment schedule. If you are finished by then and able to go, you definitely should try to go to her graduation. Again, you have to look at the big picture when choosing events to go to and where you think physically you will be at that point in time. I know I would try to plan to do everything and just see how I am feeling when the event is closer in time.
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regbeach- you may think about making some photocards that have symbols for physical sensations that perhaps your mom can understand and use to point to. She may be able to communicate by pointing to the a particular picture of a gesture, activity without speaking. You may want to talk to an occupational therapist to see if such picture cards already exist. Just an idea.... As for the loss of hair, the American Cancer Society has the Look Good, Feel Good program where one can obtain a free wig. You may also want to seek out some info for caregivers that you can find on BCO.org main website and discussion forums ( I know there is a thread for Caregivers) and through the American Cancer Society or at the hospital where your mom is being treated. Wishing you the best. Sending many hugs and lots of positive healing and calming prayers, thoughts and energy.
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OK, still pondering the 4 vs 6 treatments, since I don't think my DX is a slam dunk for 6 anyway, one thing I'm concerned about is delaying rads for too long after my lumpectomy. Some of the research I've read indicates that the longer you delay rads the more likely you are to have local recurrence. Even with 4 treatments, I would start rads 4 months after my lumpectomy. Six treatments would stretch it out to 5 & 1/2 months. Wondering if anyone else who had lumpectomy has heard much about the timing aspect of radiation.
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You would start rads within 3-4 weeks after completing chemo. That gives your body a chance to recover and also for you to get your rads tatoos /markings and a simulation.
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Melrose,
I will ask my mom's speech therapist about cards for physical sensations. Her last speech therapist skipped the words- hot, cold, and tired when we suggested them for communication board pictures and practice. So, I am not optimistic that non-concrete cards exist. I have successfully communicated dizzy and nauseous to her when dealing with another medicine so I think she understands that now. I can't think of a way to gesture numb or tingling. Pins and needles is so idiomatic (?) it's probably more confusing. Today, I think her leg fell asleep and she said it was numb. I hope it is because she was sitting way too much today (we didn't get out of the house today) and that she doesn't have some kind of issue that chemo would exacerbate.
If you have an idea for communicating numb or tingling- let me know.
Thanks.
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@ Melrose.....
I have been going to a lymphedema PT therapist from the beginning twice a week and she is awesome. My doctor referred me and thank GOD my insurance pays for all of it. She said I am at Stage 1, which is still reversible. She has me doing exercises, daily massages in a very specific order, an wearing the sleeve and gaunlet regularly. Since she said as of NOW its still reversible, i am very motivated to follow all the recommendations/insrtruction. This part is the hardest for me of everything. Im dreading going back to my gym where we have a VERY close nit group in spin and weigh class with a bandana and an arm/hand sleeve....
I need to grow up, suck it up, and just go..... I will feel better.
xoxo You guys are awesome.
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Did anyone get a whole-body rash about 10 days after infusion? This is my second round. Not sure if the rash is due to chemo or seasonal allergies or something???
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I got a rash all over my neck the 8th day after my first infusion. I had an existing onc appointment that day and he told me it was too late to be a chemotherapy side effect at that point. Did you add any new supplements or foods?
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Goldie, I am triple negative, and am having four treatments. It may have to do with lymph node involvement, MX vs. Lx, stage and grade. I start next Wednesday. I had a different cocktail 16 years ago, I do not know how I will react to this one, but I am hoping for the best. I am so glad to have found this dialogue.
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I start my chemo next Wednesday, and the Dr. never mentioned a shot for the white blood cells.
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Jerripi14 -some docs give the neulasta as a matter of course (mine did) and some wait and see if your body needs it. Its expensive - so it may have to do with insurance. I had my last treatment last week and have had no fevers or illnesses, so it 's worked for me.
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I had Nuelasta after my first infusion and ended up with a kidney infection and 101.7 about 6 days after, Felt better after the second day of Levaquin. Everyone is so different. I go for second round May 15. I hope it will be easier bc I shouldn't have the kidney infection to deal with. I lost my hair on day 13 post 1st infusion..I had shaved it 2 days prior so the nubs just started falling out. Weird. I also was "released" from my job on day 12. Something about not being a good fit becasue of missing time from being ill from chemo..WTF? WHO does that to s person with cancer?? Needless to say I am down in the dumps and going into #2 is not a good thing.
I got a sleeve and gauntlet for my trip on May 25th. Look forward to that. Will be very careful with germs etc on the plane.I travel on day 10 so if it's like last round I should feel fine enough.
Happy Mother's day to all you Moms...
runnermom1956
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What??????????????????????????????How could any human being let you go because you are not a good fit because you are on chemo???????? This is temporary!!!!!! That justs disgusts me, but know that somehow someway, it will work out to your advantage!! It has to. Keep your spirits up and continue the good fight.
Happy Mothers Day everyone!!
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I try and try to make sense of it. But it only stresses me out. One word: KARMA
Love u all my SIstas!
RM
ps I was trying to post a pic for my avatar but it won't allow me to..any suggestions???
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Today my head itched and when I scratched my scalp a ton of hair came out. I checked in several places and yup, handfuls were coming out. I decided to just shave it all off because I didn't want hair all over the place. Another milestone met.
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Bummer Goldie, I remember that part well and it really brought me down. I am now 3 weeks post final TC and mine is coming back. I guess the only encouragement I can offer you is that your hair will return! Hang in there.
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Wishing everyone an easy time this week with chemo and hoping for minimal side effects for all.
As for Neulasta shot, not everyone receives the Neulasta shot ( or Neupogen shots) after a round of chemo. Some oncos prefer to wait until a patient demonstrates a need for the shot. I know there is a lot of discussion about the possible bone pain after receiving the shot and just reading about that possible side effect can make one not want to receive the shot. However, this bone marrow boosting drug can prevent one from making a trip to the ER and possibly a stay in the hospital so that is the silver lining here. I always asked for the shot to be given in my tummy because of my tummy fat. ( The one time it was a good thing to have). The shot was administered slowly which helped prevent any injection site pain.
FOR THOSE GETTING A NEULASTA SHOT AFTER YOUR ROUND OF CHEMO:
You may want to try taking regular 24 hour Claritin to help with the bone pain that may accompany the Neulasta shot. There is an ongoing clinical trial evaluating Claritin to prevent the bone pain. Here is the link: (clinicaltrials.gov/ct2/show/NC...)
According to the clinical trial, one takes the Claritin (10 mg) once a day for 7 days beginning the day of the Neulasta treatment.
I had my first Neulasta shot with my 3rd round of Cytoxan/Taxotere and took the Claritin. I did not experience any bone pain. The Claritin doesn't help everyone but it is worth a try since from my understanding the bone pain may be intense. Just remember to ask your onco about trying the Claritin before you take it. If you are wondering why I didn't get my Neulasta shot until after the 3rd round, it is because my onco does not prescribe the shot until after one needs the shot and I developed a high spiking fever/chills that was treated with 2 antibotics after my second round of chemo. Fortunately, she called in the antibotics so that I wouldn't have to go into the ER.
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Goldie- Looks like your hair decided to leave on schedule ( 14 days after your first round). I know this side effect is hard but hold that beautiful head of yours up and keep moving forward. I got a free wig through the American Cancer Society's Look Good, Feel Good program. You may want to check to see if there is a session close to where you live. I opted not to wear the wig because it was too hot and it just wasn't me. I wore baseball caps, straw hats (Target), bandanas, Buffs or just went without a hat/headcovering. I would take the headcovering off whenever I was in the car because I didn't really care who saw me while I was driving or riding in a car. Do yourself a favor and try not to spend too much time staring at yourself in the mirror. You have so many more wonderful things to do.
Hugs!!! -
CONGRATS LAKEGIRL2!!!! So glad you got through your time in chemoland!!! I don't know if you are heading to rads. If you are, check out the Miaderm radiation relief cream. Here is a link :http://miaderm.com/. You can purchase it on Amazon. Ask your RO about what you can use.
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Hi all
I had the nuelasta shot my first round(April 24th..shot on the 25th) and the bone pain was intense. Claritin did not help me. NOT one bit..and I ended up with a kidney infection about a week later, go figuire. So I go into my next round on Wednesday and want to ask the MO for something stronger for the 6-8 days of bone pain(because it does seem to subside after that and is tolerable) What are some of you using when using the "big guns" for temporarry chemo related pain? What's a reasonable request bc my PCM won''t even discuss pain meds with me if I have an MO handling my chemo related SE. Any shared experiences would be appreciated.
Hope you all had a good Monday.
I am enrolled in LGFB for next Monday. I was fitted for a short wig(totally not what I was pre alopecia should be fun)
I know my real hair will come back but somehow I hope it doesn't..lol..not the same way it was b4
XXOO
runnermom1956
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I'm hoping the same thing, I'd like better less frizzy hair plz
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Runnermom1956- Do not hesistate to ask your MO for some prescription pain meds to help with the bone pain. You let that doctor know the intensity of the pain and how long it lasts. My onco always told me to call if I had a side effect that wasn't tolerable. She said that unless the patient lets the onco know what is happening, it is easy for the onco to assume all is well. Part of the onco's job is to help us get through the chemo. So don't be afraid to get some stronger pain meds. Hang in there!!!! You are doing great!!!!
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I know the hair going and the wait to see what comes after chemo is not easy. You gals, just keep your beautiful heads up and don't let the lack of hair get in your way of enjoying your lives. We take things one day at a time and one step at a time. When my hair was first emerging, I decided to go out without a head covering. Friends and other people just thought I had one of those very edgy diva haircuts. ( oh sure.... that makes a lot of sense, right when I had waist length straight hair for years!!!!) You just have to try to keep your sense of humor about these things. My overwhelming desire to get healthy and have more time with my family is just a part of my drive to get through all of this. Ladies, you are doing this and doing it well!!!!
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Runner mom, sorry the Neulasta didn't work for you.
When I went for my shot they has said to call if I experienced any bone pain. They had also said they would make note of it and lower the amount of Nuelasta at the next shot....so maybe they can lessen the amount they will give you.
I agree with the others, you shouldn't have to be uncomfortable.
For me the Claritan 24 seems to have worked. Although yesterday, day 7 after first chemo, day6 after Neulasta, I had some very unusual pain in the "joint" where my thighs meet the hip, but in the front part of my leg. Would almost make me keel over if I stood the wrong way...keel from the unusual feeling, not from the pain. I wouldn't know how to describe it! I am still taking the Claritan, and I guess I will for a few more days...just to be sure. Usually I suffer allergies anyway, so it is doing double duty!
Pat -
I've had two chemo infusions and two Neulasta shots - the first time I took Clariton and ended up with excruciating bone pain but managed it with oxycodone. The second time I completely forgot about taking Clariton and had virtually no bone pain. I'm not relating the pain to taking Clariton, all I'm saying is I think our bodies react differently to each infusion and subsequent shots. First chemo I had diarrhea that lasted close to 2 weeks and I lost about 15 pounds...second chemo only 1 or 2 days of diarrhea and actually a couple days of constipation so I can't even try to plan on SE for my third, forth, fifth and sixth infusions. I'll just have to be surprised!
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I agree, often SEs are a surprise. I don't want to jinx myself, but my SEs are feeling more mild this second round than the first. I still feel like crap, but not enough for Percocet. Yet! It's day 6 and I'm actually cooking dinner. No diarrhea thus far, unlike round 1. I really do hate how fatigued I am, getting winded just going up stairs or taking a shower. Well, getting winded doing pretty much anything. I just hate it.
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Well, I'm glad I was already thinking about stopping at four treatments for logical reasons and had done some research (you all and my DH are my witnesses
) before this fourth treatment hit me hard, but it has been my worst so far. Spent the whole weekend and much of today in bed when I wasn't in the bathroom. Have had horrendous stomach and intestinal cramps, violent GI symptoms plus extreme fatigue and weakness and a low grade fever. I am starting to feel better now.I called my MO's office today and told the nurse that I had decided that I was comfortable stopping with the four treatments and gave her some of my reasoning. She called back a little later and said he was fine with that. They've referred me to the RO and his office should call me in the morning to make an appointment. I like and respect my MO a lot, but I think he just plans for everyone do six treatments of TC unless they proactively tell him they don't want to. I didn't see much about that plan that was tailor made to my diagnosis and didn't think 2 more treatments were a good enough reason to delay radiation any longer. Not that I'm looking forward to rads, but I think it is every bit as important to my outcome as chemo if not more so.
We're a little encouraged about my granddaughter. They got a second opinion today from a renowned oncology surgeon at Baylor. He said that with a pyllodes tumor it's not unusual to need 3 surgeries and that if he had been her surgeon, she might have still needed 3. He thought that the first 2 surgeries were very well done and he agreed with the other surgeon that because of her age, she probably won't need reconstruction. So the 3rd surgery is scheduled for next week with the original surgeon, who my granddaughter really likes anyway. Hopefully they won't need to take much tissue this time and she will heal up quickly and have all this behind her.
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AnnieLane- So happy to hear the update about your granddaughter. Glad to hear you are feeling better after that 4th round. As it was told to me, the side effects are cumulative.
AmyQ- No fun with the "C" train and the "D" train. I used to get a little "C" because of the Zofran I took. It was the trade off--- no nausea. I tried to eat a high fiber diet and also ate prunes (Sunsweet Ones which are sweet and moist) and drank apple juice. I tried drinking the prune juice but I must have drank that too often after my surgeries to prevent the "C" and I was unable to get that first sip down during chemo. Oh well.... Hope the side effects from these next rounds are minimal.
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Melrose, thank you for the words of encouragement. I am moving on to rads as my next step so I will check out the miaderm.
AnnieLane - I am sorry to hear about your last round side effects but glad to hear you are doing better. For me, round 3 was worse than I am feeling now after 4. We just don't know what to expect, do we?
I stopped in Marshalls today and found Nioxin hair booster and something called GrowFast which I haven't seen mentioned here but is an amino fortified hair growth shampoo from a company called Rozge. I am willing to give anything a try in the next few weeks. I have kept a lot of my eyebrows and lashes (although I know those still may go) and am trying not to worry about the hair growth. -
Hi All. Have been absent a bit due to some family issues, etc. My first Taxotere (T) treatment was 5/1. Fifth Neulasta day after. (Onc said shot was $2,800- $8,000 sounds a bit over). Had bad reaction the first time and this (fifth) time. Bad bone pain and fever for about 4-5 days while taking Claritin. Now Onc tells me to take Claritin D.
Also T really knocked me down. Just now getting a little energy back. Left the house Sun for first time since for Mom Day dinner. Actually went to Alexandria today for shopping and bra fitting. Hubby drove. I am also hypothyroid and have fibromyalgia so think this plays into the energy thing too.
IBS has been extra bad. Had to take cramping meds in addition to meds for the poohs.
Worst though has been the hand-foot syndrome. My hand were blistered, swollen and burning like poison ivy. This lasted till about 2-3 days ago. Now skin is very tight and starting to peel. Looks like a chemical burn which i guess it is. Still stinging some. I've tried every type of cream I have including hydrocortisone cream. The best seemed to be Vit. E cream from Sam's or something called Deluvia cream I also got at Sam's. This is all natural Aloe cream with about 12 different organic oils plus plus. But today I found a big jar of good old Palmer's Cocoa Butter at Sam's. This seems to be helping best so far with this tight peeling skin. It' only starting to break and bleed in one spot on my thumb and I want to stop that. I'll sleep with CB cream tonight and gloves again.
Sorry for all the details but maybe will help someone else.
I suspect the nurse did something wrong with my pre-meds. The first bag she hung made me nauseous and sick and I could feel it burning through my body. Particularly between my legs. Had a couple of sores even at the crease of my leg. I called her right over and she quickly hung another bag. Then she this one will take care if the nausea the first one was to prevent.
No time for nail icing as she then quickly knocked me put with a heavy Benedryl dose that I could hardly wake up from at the end.
I've shared all this with Onc and he says he can fix it. I sure hope so. My next treatment is 5/22.
Will shut up now as I'm sure I've put you all to sleep. Best to everyone for good treatments and no SE's. My Onc said just think about all this knocking out the cancer. So I know it's all worth it.
Best,
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Deb-In-La, Yesterday I had that burning feeling also along with nausea and getting sick. Despite taking Compazine before I got there. My nurse slowed down the drip which seemed to help. That happened last time for me too. I hope my MO can change something cause I felt like crap for about 1/2 hour after and I still had Cytoxan to get through.
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Update:
Today got one of my insurance benefit statements. The Neulasta (pegfilgrastim) was charged out at $20,963.50 per injection. Perhaps for coverage percentage reasons but surprising. -
mine was about 8,200 I've never heard of one that expensive!
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The billed amt for mine was $17,000 and after the insurance network discount, it was $9K. Thank goodness it was totally covered by my insurance!!!
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I am so happy to have checked in today! I go in for my 2nd treatment Friday . I have had the thought about 4 or 6 treatments over and over in my head. My MO told me 4 but I did not question him. After doing more research my brain is worrying. I am going to talk to him Friday and try to get back here with an answer! Also I am having the issue with summer travel and being around so many people. My family always has a huge thing around July 4, there are 7 children all with children. That is about6 days after my last treatment. My sister in law was also just diagnosed a month ago with BC. We are going to try and do it.... after reading these posts I think I will think a little more about it! Thank you for being here ladies!
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Mamy, your diagnosis is very similar to mine. I had no doubt that doing chemo was the best decision for me, but my MO would have done six as long as I tolerated them well encough and didn't object. But after four, he had no arguement at all when I said I was ready to stop. It was a hard call but I'm very comfortable with it. Take some time on your good days to do your own research and remember that you don't have to make a decision until after your fourth treatment.
If I'd had any lymph node involvement or if my tumor was triple negative I think six would have been justified.
I was shocked recently to find information on this website about a 2009 study that found that Taxotere may not even be effective in preventing recurrence of ER+/PR+/HER2- breast cancer.
I also felt that it was more important to avoid any further delay in starting radiation than it was to do 2 more chemo treatments.
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I had my 3rd TC today. The blood work shows elevated liver enzyme, AST went from 21(3wks ago) to 42 and ALT from 21 to 44. My MO says it is a SE of taxotere. Has any one else experienced this? I understand liver cleanse and probiotic can help. Any suggestions?
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ud45- You may want to have a further discussion with your oncologist about what you can do about the liver enzyme situation before you do any liver cleanse and probiotic. It is always advisable to get the approval of the your doctor prior to taking any supplements because of the possible side effects that may occur from doing a cleanese. If your oncologist expressed a concern today and said immediate action was warranted, I would hope that he/she gave you a plan of action to help the situation. If your doctor did not, you may want to contact the doctor tomorrow and ask what you should do. Hope you have minimal side effects with this round.
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ud45, I agree, check with your MO before doing/taking anything on your own.
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Melrosemelrose and Annie Lane, thanks for the advice, I will call my MO tomorrow. according to the infusion nurse, he said it was slightly elevated and okay to continue with chemo. it is just terrifying because 3wks ago AST and ALT were 21IU/L but today AST is 42 and ALT 44IU/L. I hope this is treatable and not metastasis
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Ud46 I have heard that it's common for liver enzymes to go up during chemo. Probably something to do with your liver trying to process all those chemo toxins and all the meds! Don't panic & jump to mets, I don't think most bloodwork for mets is reliable during chemo anyway (even the tumor marker tests tend to come back higher during chemo & it doesn't mean mets).
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Mamy- Hope this next round of chemo will be easy on you. I know how much you want to be at the July 4th family gathering. Really need to do the wait and see as to how you feel by then. There are plenty of precautions you can take while at the family gather if you are able to go. Minimal hugging and elbow bumps inside of handshakes, and lots of hand washing will help. If you will be having communal/buffet meals, you may want to consider getting your food first before it leaves the kitchen. If you get tired, rest or go take a nap. Your family will understand if you don't participate with everything. Wishing you the best on Friday!!!
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Ud46 - my alt and ast also trended up with chemo. I finished my last treatment and my MO was not worried and expects them to go back down. I will find out in a few weeks but my counts before my 4th treatment were 115 alt and 52 ast so very high.
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Well Hello Out There Sister Warriors,
Just as I put my fourth and LAST Chemo treatment behind me, I foolishly and accidentally tripped while gardening last week and broke my left foot at the fifth metatarsal. This event has been worse than all the Chemo put together. I had an ultrasound which found a blood clot so I was sent home on Coumadin and IV antibiotics. Of course I drive a new Jetta, stick shift, so relying on my Mom (who is visiting, Thanks Goodness) to revive her driving skills has been quite a hoot (bump, stall, jump, stall, bump, beep, beep, bump, jump, stall). Now I am anemic, have 2 blood transfusions to look forward to today and then a chest x-ray and bone density study next week. And the orthopedist told me that this is one of the toughest bones to heal so 3 months in a boot and schlepping rides to Radiation therapy next month I guess.
Please do your magic out there Sister Warriors and send some good Karma and prayers my way. Who would think that the simple act of helping my Sister plant flowers would end up so crazy!!!!Peace an minimal SE's to you all. I'll keep you posted.
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Sending good vibes your way Carolyn! Congradulations on being finished chemo! I only have one down!
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I also have completed one and have my second one on Monday. Anyone else up next week?
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Yea Carolyn! So nice to have that in the rearview mirror- eh?
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We decided to proceed with chemo for Mom (who had the stroke last year), knowing we can stop at any point if it is too much. The dr. said he will be aggressive with the anti-nausea meds and will give Neulesta from the start. He was not familiar with using Claritin with it (which worried me a little since so many on this site seem to use it to prevent bone pain). He suggested I take her temp 2 times per day to look for any signs of infection. Infection is what I am worried about. But with Neulesta it should be OK, right?
Nausea my mom understands, fatigue will be obvious, she knows "hurt" but hopefully she won't need to communicate it by pointing to something. I go back and forth with feeling OK about the decision and dreading the moments when I will be deciphering if something is wrong or if it's just me freaking out.
She is only getting TC, not ACT so hopefully that will make things smoother too. She will start next week!!!
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Regbeach, your Mom has a great advocate in you, I can tell! Many people get thru TC with minimal and truly tolerable side effects. I am hoping that is the case for your Mom who has already been through so much.
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Goldie, I'm going for round 3 on Wednesday. I don't feel ready, I didn't have a chance to feel good this go-around!!
Regbeach, good luck to you & your mom! Hoping she has an easy time of it. Like you said, you can always stop if it seems too difficult -- physically or emotionally.
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Goldie1431 I have my third round next Monday so will be thinking about you and hoping it goes well. Next week is a killer for me. Chemo Monday, Wednesday, Thursday & Friday I have to oversee a tent install and all deliveries for an outdoor wedding. Saturday is decor set, rehearsal and rehearsal dinner and Sunday the wedding. I have added extra staff to help me out as I will be at my worse starting Thursday. Please I hope SE are minimal.
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regbeach- Wishing your Mom and you the best with her chemo. I used to take my temperature a few times a day even while I was on the Neulasta shot. It is a means to check to see that the shot helping to boost the bone marrow for the production of the white blood cells and to see if any infection occurs. The chemo can decrease the white blood cell counts. With that being said, her temperature could go up but not reach the point that you need to contact the doctor. I used to write my temperature down on a calendar so I could keep track of it. I also had a food diary and daily drug diary that really helped. I also used a blank calendar to mark how I felt every day and when my chemos were. If you need this forms, you can send me a private message with your email address. I can email you the forms.
I also had this book-- Eating Well Through Cancer by Holly Clegg and Gerald Miletello, MD. The book had sections of how to handle certain side effects as well as recipes, shopping lists, tips. You can probably order it on Amazon. I found this book helpful in its description of side effects and what to do. I know the same info is available on the BCO.org website and other places on the internet (chemocare.com) but having a book handy to look up things was very helpful.
You may also be able to hedge off the constipation that may occur because of her anti-nausea meds. I took Zofran which has a tendency to cause constipation. I ate those Sunsweet Ones which are individually packaged prunes which are really sweet and moist. I also drank apple juice which helped.
For the nausea feeling, I drank ginger ale for a few days after I had received the chemo.
The way that this regimen hits varies from person to person. I had my chemo on Tuesdays, felt fine on Wednesday and Thursday and then Friday, I would start to not feel so well. I rested on Saturday and Sunday and felt okay on Monday. I hope that she has minimal side effects like I did. The steroids (Decadron) can cause one to not sleep at night. If she is prescribed this to take twice a day, try to make sure it has it no later than 7 am in the morning and 7 pm at night. She should also take these drugs with food because these drugs can cause nausea if taken on an empty tummy.
You keep coming back here for whatever support and help you need to help your Mom get through the chemo. Your fears are probably the same fears that I had before I started chemo--- am I doing the right thing, how will I know that I feel good or not and what do I do if I don't feel good. Sending you many HUGS.
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Indenial I hope round 3 goes better for you. I assume that you are getting close to the end (4 rounds)? That is an accomplishment! I am only going for #2 of 6.
AmyQ also congratulations on #3. Your schedule next week sounds crazy. You may be so busy that you do not have time to even think about a side effect! I hope all goes well for you also!
Hope everyone has a good day tomorrow as well. -
Melrose, thank you for the advice! I like the elbow bump! Will have to use this now as I am a big hugger and really shouldn't be for now. And the hand washing... I have that down ! I have sanitizer on me all of the time!
AnnieLane , I don't know why the 4 or 6 is bothering me so. Thank you for the info! I will not be having radiation since I had my BMX in March, so maybe 6 would help?... Asking in the morning! Thank you!
So it is 11:30 here in Seattle, I am supposed to be up in 7 hours to get to my second chemotherapy tomorrow . They gave me a steroid called dextromethorphan to get through the side effects of the Taxotere. I take it the day before infusion for a total of 4 days. It gave me horrible insomnia the first round so they gave me a sleeping pill to help. It's not helping!! I took the max dose of the sleeping medicine tonight and still can't sleep! HELP, has anyone dealt with this? What did you take to help the insomnia?? I have to take this steroid twice a day through Sunday and each subsequent infusion. I want to sleep before then! If anyone can help before 10:30 am Seattle time I could then ask my MO? If you don't read this before then, I would still love advice! I can always call and talk to a nurse about it and get something changed.
A huge thank you and big hugs for all of discussion on this board! It helps every time!! -
mamy- Just saw your post about the insomnia from the Decadron ( steroid). This happened to me and I decided not to fret about not sleeping. it seemed like I was getting more upset that I wasn't falling asleep. I would get up and watch mindless tv ( ie Law and Order) and would catnap. I finally started takingBenedryl at night to help me sleep. My onco said it was okay to do that since the idea of getting any type of prescription sleep aid just didn't appeal to me. Hope this helps. Wishing the best with the chemo today and minimal side effects.
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Mamy......I take Valium to sleep, its a God send. My MO said that anxiety keeps patients up more than the roids do! I have been sleeping about 6-7 hours a night.
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Thank you everyone for your support and melrose for the details.
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Mamy, one thing to ask the MO about is reducing your steroid dose. My MO has me taking only a half-dose once a day for 3 days. He actually is considering reducing it even further since I've gotten through the first 2 treatments without reaction. I've found that with such a small dose, it doesn't interfere much with my sleep (except the very first time but that may just have been anxiety!) I'm very happy to avoid many of the negative steroid effects because my dose is small.
Other than that, maybe try a different sleeping pill, or something for anxiety?
Goldie -- yes I'm halfway through!! Hurray!!!! Only 2 left! Round 2 was rough but some of my issues weren't actually related to chemo, so I think the last 2 will likely go more smoothly.
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I had and have terrible anxiety and could not sleep. My doctor does not prescribe sleeping aids or pills but did prescribe antivan which is an anti anxiety drug. It might help. Please ask your doctor to see if it is a possibility for you.
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Thank you so much for your help guys!! I will talk to him about it with those ideas in mind.Ended up with about 4 hours of sleep, but feeling good. Probably the anxiety! Thank you again!
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Mamy, as regards the number of treatments, keep in mind that since your tumor was ER+/PR+ your five years worth of "anti-hormone" therapy is probably going to be a more important weapon in reducing your chance of recurrence than chemo is. We think of chemo as the "big gun" because it's so hard to endure, but for most of us it may not be.
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Thanks to this group. I have tried ginger ale (stirred out the bubbles) and actually had moments of "normalcy"!! Although 10 days out from my 3rd infusion I was feeling very dizzy and though I was going to faint. Since I had issues after round one, I called in and went in. Turns out my labs were fine, but I was dehydrated. I drink at least 60 oz of water every day so not sure how this happened. One thing might be the Claratin. I usually only took it during Neupogen shots, but Onc said to take it every day...think it dries you out. And the Onc nurse said a change in the weather to hot and humid somehow can contribute to dehyration.
4th and final round coming up next Friday. Thanks melrose, for reminding me the "anti-hormone" therapy is the Big Gun in my case. Will have to endure the final chemo then rads. But the anti-hormone sounds like the vital piece to my particular puzzle.
My fingernails hurt, are turning dark and have a ridge at the cuticle. Will I lose them? My toenails hurt but no discoloration so far.
What kind of SE can I look forward to after round 4?
Thanks ladies, good vibrations to you all for a good SE free weekend!
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btdemo try some tea tree oil I never had any problems with my nails but I used it regularly good luck, btw I'm kindof nervous about starting the tamoxifen too I wonder how many people DONT have problems with it and the SE's
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Melody,
I took Tamoxifen for the two months between DX and surgery and I had no noticeable side effects! I have herd that some people get terrible joint pain but I had none. Good luck to you and am wishing you no SE.
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btdemo- I was fortunate and only had some indentions and slight discoloration on my nails from the chemo. I also iced my fingernails and toe nails during the Taxotere portion of my chemo rounds which may have helped. Just be careful when doing things with your hands (like wearing rubber gloves when washing dishes or cleaning around the house or digging in the yeard.
Melody-I've been on Tamoxifen since the beginning of September 2012. I haven't noticed any major side effects. I did experience some joint pain when I first started taking the Tamoxifen but don't know if that was from the residual side effects of the chemo. I remember moving around so slowly and feeling very achy when I stood up after laying down or sitting. Yes, it does take the body some time to recover from the chemo. I still have the "not so hot" hot flashes but I had those during chemo. One thing you can do to help yourself is to view the Tamoxifen as a maintenance drug and not look at it as a 5 year sentence as some do. When one thinks about what that little white pill can do, then one realizes how powerful that drug is. For me, it is just something I can take, need to take and want to take. As I tell those who hesistate to take it, I take it for me, my family, my friends and in honor of all of those with triple negative bc who are are unable to take Tamoxifen and wish they had one more drug to help them.
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I use a scopolamine patch to keep nausea at bay and it lasts for 3 days so for anyone battling this SE check with your onc for an Rx.
Goldie 1431 - thanks for the wishes...I too hope I am too busy to even notice the SE from treatment #3!
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Melrose, I like your attitude about the Tamoxifen. I will probably be taking Armidex, which also has lots of potential side effects, but is probably going to be my best chance of preventing recurrence. When I made the decision to do chemo, my oldest daughter said, "Mom, we know you're doing this as much for us as you are for you." It meant so much to me that she recognized that and I hope to keep it in mind as I go through the next phases of treatment.
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Sorry to say ALL that the Tamoxifen put me down like I had the worst flu ever. In bed for 6 + days before I stopped it on my own. My 25 year history of reflux disease and irritable bowel made it impossible to tolerate. Just finished chemo. and heading to rads. next month. Then I will have ovaries removed like Angelina (want to b just like HER) to stop the estrogen production and see what drug my MO has in mind for me next!
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Carolyn, I'm surprised your MO started you on it so soon after finishing chemo. Chemo is so hard on the whole GI system anyway. Nevertheless, it sounds like it was not going to be your best option.
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AnnieLane - thanks for your comments and concern. I was started on the Tamoxifen before chemo and just could not tolerate it. That is why I chose to take the chemo. Done now and heading to rads. then the ovary removal. It's always something!
"Flowers" (aka cmbernardi)
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Hi all
Had my second round ot T/C on May 15(nuelasta the next day) and it's been horrible. Diarrhea bone pain depression, sore throat, like a big lump in your throat, ear aches, fatigue..well..who am I telling here? you all know what I mean. 2 more to go..June 5th and 26th and then Arimidex for 5 years. At least this time I was able to convince my MO to give me lortab for the hard week (and it's a hard, hard week for me.) I have no appetite and the diarrhea is bad so I am afraid to eat anything for fear it goes right thru..and I don't like taking Imodium bc I figure all that poisin needs to come out so if I am at home why not just do it?(TMI?) I cry all the time from the pain, even with the lortab.I am a BIG baband a mess! IDK if you remember but last cycle, day 9 post first infusion my boss "let me go" and I have been milling that around in my mind..why?? I was an inconvenience for her? I nanny'd her kids for 5 years and she a DOCTOR..her husband a SURGEON..OMG no contact with them or the kids which I am sure is adding to my depression. Anyone out there have to deal with depression and how?? Losing the hsir didn't help and I HATE my wig. i was pressured into it by a well meaning DH who just wanted outta there at the time. It's a different color thatn I am used to as well as style, I have African American type hair and this is a short straight style..Raquel Welch..Oh well ..my Sunday rant..sorry for this ladies when there is so much to be thankful for.
i go to LGFB on Monday maybe that's waht I need..camaraderie!?
thanks for listening
runnermom1956
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Melody46: thanks, I will try the tea tree oil.
melrose: Thanks for the tips, and...well said about perspective.
runnermom: I feel terrible for your situation, your onc should be able to mitigate some of your SEs with other meds, maybe review your chemo cocktail, etc. (I have to say that your employer "letting you go' infuriates me, I feel like starting and email campaign, a facebook campaign, call your elected officials etc. I realize few of us probably have the kind of energy necessary to mount that kind of fight, but gosh where is the compassion and humanity?? ok, rant over)
as for nausea, I had onc prescribe me phenergren (sp?) suppositories. After surgery it was the ONLY med that worked. Tho treating nausea from surgery narcotics is, apparently, different from chemo nausea, still...
And thank you to those who recommended ginger ale. I stir the bubbles out of it and drink it in between the tons of water I try to consume each day. And I actually had a few moments of normalcy!!!
Good vibrations to you all, it really is a roller coaster ride. Just when you think you understand some of the SEs, here come more. Thankful and grateful ther is this forum to rely on!!
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runnermom1956- Hope you are feeling better. You may want to call your onco and let him/her know about the severity of your side effects. Perhaps an adjustment in your meds may help. To help with the "D", you may want to eat a bland diet ( BRAT diet- banana, rice, apple sauce, plain toast) or maybe some mashed potatoes. I know you are having a difficult time but hang in there!!! You will get through all of this; rather you are getting through all of this. As for the hair thing, my poor little wig has abandonment issues--- Why? It's because I never took it out of the little plastic ziploc bag that I received it in. I stuck with either bandanas (Walmart 99 cents), Buffs, baseball caps or straw hats (Target) or just nothing. I do miss rubbing my little bald head sometimes because I found it rather comforting. As for the tears and feeling a little blue, it comes with the territory here. I know I cried during my time in chemoland' not so much because I was doing the chemo but because I was tired. My boo hoo periods never lasted more than a few minutes. You just have to decide that you are going to keep moving forward and hold that head high and keep a positive attitude. When you are finished in chemoland and look back at where you have been, you will know in your heart that all of this hard work and effort you are putting out right now is well worth the good times and not so good times you have been through.
Wishing everyone this coming week, a very good week and minimal side effects. You, gals are doing this and doing it well!!!! Hugs!!!
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Hi all and hoping everyone is doing great. I am 10 days post final chemo and feel just tired and queasy. I dodged the bullet of radiation (although it was in the original plan) and will be starting Armidex sooon. Does anyone have experience with SEs of Arimidex?
Also, how long after chemo does your hair start coming back in?
Thanks and wishing you all well.
xo Nancy
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Nancy - I am 11 days PFC. I have found some youtube videos that shows hair growth . Interesting to watch but it seems like it's going to be long haul:) Just search " hair growth after chemo" if you are interested.
For those of you worried about cumulative side effects, I am happy to report that the se of my last treatment have not been bad at all.
Hang in there! -
Milo, I found a great thread, "Coping with the SE's of Armidex" I like it because the gals who started it seemed to be making a conscious effort to keep it positive, without denying anyone a place to vent. It seems like there are a few threads on these discussion boards where women just seem to feed off each other's negativity, but that is not one of them, nor is this
I've spent a lot of time reading the pages of that one taking notes about things to try in case I experience the different SEs. Of course too much of that and you start to think you'll experience every side effect possible, so I laid off it for awhile. I'm also ten days post final chemo and still need to get through radiation. No need to borrow trouble.
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Milo5-You may start feeling like fuzz on your head. It may be clear or gray in color and very thin. I know I felt that little fuzz after the 4th round of chemo but it would fall out after the next round of chemo. I decided to give myself a month after the final chemo to see what hair would sprout and not get upset if nothing had grown during the first weeks after the final chemo. Within 2 months of being PFC, I had enough hair to go out in public without a scarf/head covering. It was very very short at that point but it came in evenly. It was probably about less than 1/2 inch. At this point, I'm 9 months PFC and the hair is at least 2/1/2 inches long. I haven't trimmed it since it surprisely is still coming in evenly. I try to eat healthy and do not take any supplements (ie Biotin) to help with the hair growth. I think people just think I have a short haircut and don't know that a year ago, I had very little hair. Try to be patient with the hair return. You can go on the Hair, Hair Hair discussion thread and find some gals have posted pics of their hair growth. Congrats on being PFC!!!!
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btdemo I forgot to say I also iced my finger nails while doing taxotere, so between that and tea tree oil I had no problems, thanks for reminding me Melrose. I had a really hard time emotionally and although the crying only lasted for alittle bit the ups and downs were too much for me. I'm a month out of my last chemo and coming off the Paxil I used to get through it.
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Milo 5...I also just completed my last chemo 10 days ago. Am still schlepping around the house and mild nausea comes and goes. Thought because I was so happy about being finished with the chemo I could push through it. Did too much over the weekend and slept almost all day today. Still really kicks your butt doesnt it
I have some thin hair coming in about 1.4 of inch, but sure isnt covering very well. Anxious about when it will all fill in. Seems like the gray/white ones are growing but the dark ones arnt !!! WTH ! -
Starynights- congratulations on finishing your chemo! You must be thrilled even though you are still having some side effects.
Today I had chemo #2 (of 6) and they reduced my steroid for yesterday and tomorrow and I feel much better this time. I hope that nausea does not hit. Tomorrow and Wednesday I will have saline infusions and also get my neulesta shot tomorrow. I hope my side effects will be manageable. No stomach cramping yet so that is a good sign!
I hope everyone has a good week. -
You know I think we can be especially prone to depression after the last chemo, because it's so easy to forget that we are still experiencing cumulative side effects and have a lot of recovering to do, so it may be awhile before we feel any better. Then it's easy to start focusing on how long term our treatment plan may be and start worrying about what side effects we may suffer from radiation and/or "anti-hormone" therapy. I found myself getting in that rut and had to make a conscious effort to limit my time on those threads for awhile.
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This past Saturday I discovered blood in my urine which can be a serious SE of Cytoxan - although I have been very diligent drinking more than enough water and fluids daily, Saturday I was out all day and being preoccupied probably only consumed 8 oz. By the time I got home I noticed my urine was pink and just an hour later was a bright red. I called my husband who was out of town and explained it to him. He said start drinking gallons of water and don't stop. I did and by the time I went to bed 4 hours later there was less evidence of blood and by the time I was up at 2AM all was back to normal and stayed that way the rest of the weekend.
I had infusion 3 of 6 of TC today but told my nurse about the blood so she ordered a urinalysis to check for microscopic blood or bacteria. It came back negative so my onc approved continuation of TC for the remainder of my treatment. My purpose for posting this is even though I was day 19 post treatment 2, the Cytoxan can still burn and damage your bladder so please be diligent with fluid consumption. I consider myself lucky to have dodged this bullet.
Good luck to my TC sisters this summer.
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AmyQ: I can imagine that was scary. I just had my 5th treatment and luckily haven't had any SE's regarding the kidneys. Hopefully it was just due to dehydration. Luckily your bloodwork came back ok. I would definately keep drinking lots of fluids though!!
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My mom's chemo was delayed til next week and I am trying to remain positive. I had a few days of second thoughts and lots of tears regarding the decision to proceed with it. (remember, my mom is the one who had the stroke last year). I have read so much but still don't feel prepared.
On some reputable websites (like, comprehensive cancer centers), I read that bodily fluids contain chemo agents for 48-72 hrs. after treatment and need to be handled with special gloves, laundry kept separate and washed twice, fluids (urine, blood, feces) kept off skin, etc.
During the day, my mom sometimes has accidents especially if we have company or she is very tired and doesn't communicate she has to go to bathroom. At night, I don't change her every few hrs. I use special overnight diapers that are supposed to keep urine away from the skin. Sometimes, they work but some mornings, either from a leak near the elastic or from too much urine, her PJs and bedpad are wet. In those cases, her skin is wet.
When I asked the oncologist via the nurse, he said he doesn't think there will be a problem but if so, he could arrange for a nurse. I am not sure I believe him. I found the warnings on several sites. When I look further on the internet, I found stories of long term chemo use in the home and caregivers getting nauseous and other serious side effects of exposure.
For those who had a chemo class- was there any mention of contact with urine, etc? The same would also apply to vomit. Any mention of special handling or cleaning?
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Regbeach, I haven't heard any of those warnings, but I didn't have any reason to research chemo from a caregiver's perspective either. Did the warnings make any differentiation between different chemo drugs? I would think long term exposure would be longer term than your mom's regimen would be, though. (Wondering if you got the PM I sent you a few days ago, by the way.)
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Regbeach, I heard a few people on the other regimes mention needing to flush twice etc. but I haven't heard it in reference to the TC. I personally don't have burning with urination or anything like that and received no warnings about bodily fluids during chemo teach or otherwise. Even the mentions of this I've seen in connection with other regimes haven't been to the extent you describe, is it possible that's for very different types of chemo treatment?
One thing I would consider with your mother is asking for extra IV hydration for her -- the day of chemo & perhaps continuing for 2-3 days after. This would help dilute the chemo (reducing your concerns about bodily fluid contact) but even more importantly, will help flush the chemo out of her system more quickly, keep her feeling better, etc.
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Milo5 and ALL
Yep! The last chemo. is a BIG TIME celebration but does not come without the SEs. Fatigue, nausea, diarrhea, bone pain, stiffness, anxiety, insomnia or hypersomnia, etc. and PILLS, PILLS, PILLS! HANG IN THERE ALL. I hope we can all truly say very soon that "WE are DONE with Chemo". I am thank goodness and heading to RADS. June 3 and then the oophorectomy. Oh well, it's always something!
Happy Weekend Everyone. Stay safe and well with minimal SEs and Peace, Luv and Blessings!
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SO HAPPY YOU ARE DONE WITH CHEMO!!!!! YAY!!!!!!!!!!!!
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Thanks annielane for reminding me the last chemo doesn't mean chemo SE are over. I had my final chemo Fri 5/24 and went into it just like any other. But the nurses, Onc, pharmacists etc were all congraulating me on my last infusion and I think I got caught up in it. But now it is back to managing SE for the next couple of weeks. Still, it is good to know infusitons are over. I am going to try to limit my forward thinking about rads and hormone blockers for a few weeks...
Do any of you still have stubble hair? I have some on top of my head that never fell out. Sides and back are smooth, but I haven't lost the stubble on top...not that it grows at all, but it never all went away. Will it fall out from final chemo? if not, is this something I need to be concerned with? Did chemo work, was it strong enuf? Or am I dreaming up things to worry about?
As always, thank you for the input and support.
Good vibrations to all for a good weekend, and a good Memorial Day.
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Congratulations on the final chemo, btdemo! Same as you, I had stubble on top and smooth on back and sides. I am now 5 weeks PFC and its coming in everywhere now. My fatigue is getting better everyday and I can climb a flight of stairs with just being slightly out of breath and minor leg muscle burn and weakness!
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btdemo- Congrats on the final chemo!!! Let your mind and body rest before the next steps of treatment. As for the hair, I had some hair that never fell out. Eventually the pre-chemo hair did fall out but new growth came. That wonderful duck down hair comes in ( not necessarily in the color you want or like). I used to rub my head to feel it; it was so comforting. There will be a point in time that you decide not to wear anymore head coverings. That happened for me about 2 months after I was PFC. Yes, it was very very short and was coming in evenly. My current driver's license pick was taken when I was 6-7 weeks PFC and taken without a head covering/wig/hat on. I know I get double takes from those who ask to see my license for identification since I have hair that is at least 2 1/2 inches long now. As always, be easy on yourself. You will feel better soon and your energy level will return. Don't forget to check out the Miaderm radiation cream before you actually start rads. You may have to order it on Amazon.
Thinking of all of you and hope each of you is having a relaxing weekend with minimal side effects.
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regbeach- you may want to have a squirt bottle handy to rinse off your mom's bum after urination and also may want to have some Destin ointment on hand. There are two other sites that I would go to when I was on chemo. Here are their links: http://oncolink.org/index.cfm which is the Abramson Cancer Center at U. of Penn and http://chemocare.com/ which is the website founded by Scott Hamilton, former Olympic ice skater and cancer survivor. The intake of fluids is very important after the chemo. You may want to talk to the doctor about automatically having your mom come in for IV fluids after the round of chemo. Many gals I know have said it helped them.
You may just want to have a box of disposable gloves available when taking care of your mom. It's just something you and any nurse/care giver would do. You may want to arrange to have a home health care person come in to help you. Don't be afraid to tell the doctor that this is what you need. If you need help or think you will, get it.
I know you will get through this. Just sorry we don't live closer to each other so I could actually help you. Hang in there!!!! Sending you positive calming and healing prayers, thoughts and energy.
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Thanks TM60 and melrose for your comments, good info about hair. And I do need to remember to take it easy and not expect immediate energy... one step at a time.
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btdemo- You got it!!!! You just keep eating healthy and resting and your body will recover. You may feel muscle and joint pain for a while but it will get better. I can't give you a timeline of when your body will feel better but slowly but surely, you will start to feel good. One day, you will realize that the achiness is gone and you are moving around better. For now, just take it easy and you will be ready for your next phase of treatment. HUGS!!!!
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I have been wondering why I still feel so achy it seems everyone does for a while after completion. My legs hurt alot still and I was beginning to worry about it. Thanks for the info
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Melody- My leg, hip and foot joints all used to hurt. I used to shuffle around and took little steps when I first got up from sitting or laying down. I would always take my time when I first would stand up because I never felt sure that my legs and feet were going to hold me. Now that I look back, I guess that my foot pain was perhaps neuropathy and not a flare up of plantar fasciitis. I just keep moving and walking which seemed to help. At your next onco appointment, you can talk to your onco about how you feel post chemo. If the pain is intense, you can always call your onco to see what he/she recommends.
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Hi Ladies,
I hope you are all feeling OK today. Thanks for the comments about my mom (the one who had the stroke last year and the decision to proceed with chemo). It was postponed from last week to this week (mostly, because I thought she was getting a cold which she wasn't). Just like last week, I am having second thoughts about the decision to proceed with chemo. One minute I feel confident and hopeful that the side effects will be managable. The next I think about how tired she is right after her hour long physical therapy...until she gets a root beer and a doughnut. (yes, I know not healthy). Or how she is tight after sitting on the couch for a few hours. And try to imagine if she will even be able to stand up on the "tired" days of chemo.
Plus, I mention chemo and that she will feel bad for a few days, but that it will go away, etc. I explain that it is best to kill any cancer cells now, because she might get cancer in a place they can't treat it. Remember she can't really speak, but has been able to understand more and more. Her phrase is "I don't know" which sometimes comes out when she can't find the "right words" she wants to say. Of course, sometimes it is an appropriate "I don't know", too.
When I talk about going for chemo, she says I don't know, then eventually makes a face and says no. I don't know if she can make rational decisions. Like, she decides if she wants to go the store or stay in the car, or if her clothes are dirty. But, somedays she would skip therapy if I didn't convince her to go, and sometimes she is impulsive and touches her toothbrush to the bottom of the sink (yuck!). My brother talks to mom and gets her to agree to trying at least one treatment to see how it goes. Then, I ask to confirm and she is back to "I don't know."
I can't imagine her anxiety about the whole thing (though with how much I've cried today, maybe I can). I think of how I procrastinate and postpone and would do anything to get out of a colonoscopy...this is way more than that. She went through fatigue issues when getting adjusted to anti-seizure meds. She missed alot of therapy and her walking and strength suffered.
It is so hard to know what is right. The doctor says because she is improving we should do it. I know it is her best defense. Sometimes my brother says- maybe, we should cancel it, if mom doesn't want it, she has been through so much in the last year, maybe we should let her enjoy the progress she has made, and just see what happens.
Back and forth we go. And I still haven't told her sister.
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regbeach - sorry for all that U R going thru with Mom. You R right, It is hard to know what is best to do next. Would she consider a family counseling session with a professional? Just a thought.
All the Best to you and Happy Memorial Day to all our veterans far and wide. Peace y'all!
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Regbeach, two things to keep in mind:
That if you go ahead and start your mom's chemo, you can stop after the first (or second or third treatment) if it turns out to be too much.
Mention every troublesome side effect and symptom to the oncologist and don't assume it's just something that comes with the territory. Make sure you know how to get ahold of someone after hours, too. I had terrible sharp, stabbing nerve pain from my first treatment, but didn't mention it until I went in for my second. My oncologist knew exactly what to prescribe to help me, and I never experinced it to that degree again.
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For those following the story about the cheme decision for my mom. First, thanks for reading and commenting.
This AM (Monday) I talked about chemo again with mom. She was adamant with no. Then, I said she would still have to do radiation and she said no- which made me question her ability to decide all over again. Most of the day I was thinking we would cancel it. Then, I talked to an old friend who basically thought the original plan of trying at least one treatment seemed like something everyone had agreed to and why not do that. My brother and I talked to mom again. She tends to listen to him- like, she won't do extra exercises at home for me most of the time but will always do it for him. It's either his deep voice, or she's just tired of me telling her to do things all the time (take your medicine, move your foot, etc).
Anyway, with both of us there, she agreed to do it. Oddly, this time, she cried, which of course made me question all over again. It seems no matter the decision the opposite one always seems better! I say oddly- because the neurologists told us her personality and emotions would be affected by the stroke. One specifically said she would never cry again. She has laughed, she has been annoyed but through all of rehab and breast cancer news never one tear until today. Maybe the situation finally sunk in, maybe her decision this time even with tears was made with a different clarity, a realization that chemo as bad as it might be, might be a good choice. Or maybe she just couldn't take us bringing it up again and is doing it because my brother said the drs. and us think it is a good idea to try.
Either way, it doesn't feel "better", it just feels surreal. Of course, I googled one more thing and read horrible stories of side effects- numbness in feet, blah, blah. And read that the steriod has a moderate interaction with her anti-coagulant- trying to tell myself that it is just for 3 days.
She is always tired when she goes to bed (silly, aren't we all), plus she takes her more of her anti-seizure med at night which might add to it. Those are the moments when I think- My God, I hope she can still walk on the "fatigue days" and that there aren't more than a few in a row. I thought her agreeing would feel better. In the AM, I first felt bad (like wrong decision) when she was saying no, then I felt sort of relief that we wouldn't be dealing with chemo. Then after talking to my friend, I felt like chemo was right again, then mom's tears...
Steroid in the AM and IV line in the afternoon.
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regbeach
Best to you, Mom and ALL. In your pockets with healthy dark chocolate and big HUGS. And a good short work week to those of you lucky enough to have a job right now (obviously I do not and boy do I miss some of it). Peace!
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Nothing like a last minute new decision....
First, thanks for your support in my decision-making regarding Mom and her chemo. I was mentally ready to start it, felt I could (as her caregiver) deal with the side effects, picked up the prescriptions and Claritin, left a message for the doctor with a dozen final questions (making sure he knew she couldn't feel cold on her leg -in case of neuropathy, asking about B vitamins for it, asking if she should sleep in recliner in case she throws up at night because she can't sit up herself, etc.) When I woke up at 5:30 am, it felt unsure, but then it felt good to be proceeding.
Half an hour later, mom woke up. She looked really tired. I reminded her we were going to hospital in a few hrs, re-explained the whole situation, she said no, was visibly irritated. I talked to my brother. We cancelled it. Talked to the doctor. He said either choice would have been a good one. So, we are hoping for the best.
And, yes, I am still thinking about those rampant cancer cells, wondering if they will multiply "too fast", and sort of wishing poison was attacking them. Hopefully, those thoughts will pass. Off to schedule radiation.
Good luck to everyone on this forum. Your ability to manage counteracted my worry each time I found some horror story elsewhere. Thanks again!
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Regbeach, you know we will all support your decision. It was going to be a tough call either way. May I suggest doing a little more research on low dose aspirin therapy (3-5 days a week) and Vitamin D3 supplements as lower stress things your mom can do that might reduce her risk of recurrence? There's good evidence for both even if it's not dramatic. Of course you would check these out with her MO and other doctors.
And be sure to avail yourself of all the good info about radiation treatments on this website.
Blessings to and your mom!
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regbeach- No matter what, it is all good. Since she has let you know that chemo is not what she wants, just have to respect her wishes. As for the radiation, check out the Miaderm radiation cream that I've been told by my gal pals works very well. Here is the link for the website: http://miaderm.com/ . Here is the link to Amazon which is where most purchase this cream: http://www.amazon.com/Miaderm-Cancer-Radiation-Treatment-Protects/dp/B004TB9SFE. Most of the gals have used at least 2-3 tubes. The radiation facility may give this cream to patients. Just make sure you ask the radiologist what he/she recommends. Aquafor which can be purchased at the drug store, Target, HEB is also sometimes recommended. Wishing your Mom and you and your family the best. You are always welcomed here and always welcomed to private message any time if you need someone to vent to.
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Regbeach, I am glad you have come to a decision you can feel some peace with. I can only imagine how agonizing it has been to have to make these choices on her behalf while still trying to respect her wishes. There are also a lot of alternative things you can try that would have minimal side effects & may reduce recurrence. Maybe that's a path you might want to explore down the line... or not, and just know that you've made the best decision you could make NOW with the information you have NOW, and try not to second-guess it further. Lots of love and hope and strength to you and your mom & your family.
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Regbeach, your Mom is so lucky to have you as her advocate. You are doing all the right things by getting the information you need to help your Mom and family make some important decisions but in also respecting her right to choose. I was in a similar situation years ago with my Mom who had Alzheimer's but was still aware. Her decision-making ability was hard to assess at times as sometimes she was more clear than others. It's a heavy burden, but an awesome expression of love. Strength to you, Sister warrior!
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Day 5 PFC. Difficult to determine what is a SE and what is just nature...allergies/sinus was the headache culprit I determined after a day of it. Took half a Claratin, seems to be doing the job. Still have some muscle aches and general weakness, but each day is better than the last. Thank you all for your support.
Annielane: I woke up thinking of your quote: "even so, it is well with my soul". Calms me each time I read it, thank you.
Regbeach, I cannot imagine your situation, but you have total support here. Also, my aunt (aged 96) and my friend's aunt (aged 83) resond better to men. We think its a generational thing but it has been noticiable, actually strikingly so. And by comparison, they have been "frustrated" with us women family members. You are making the best, caring decisions and allow her to be involved in those decisions. Your journey is not an easy one, but good vibrations, prayers and thoughts are being sent your way.
melrose: thank you for your wise cousel. I know i have asked questions that have likely already been answered on previous threads (maybe more than once, darn chemo brain!! ), but you continue to respond kindly with great info. Thanks. (and thanks for reminding me to take care of me, easy to forget that one)
a peaceful week for all is my wish.
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Has anyone gotten numbness in their face? My cheek keeps getting a bit tingly and numb and the skin on my neck feels kind of... tight? Seems to be mostly on the left side & comes and goes... It's just annoying (and anxiety-inducing) more than uncomfortable or painful... hoping someone can tell me it's a normal SE...
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Hello ALL,
Thank you so much for the words of wisdom, the prayers, the reminder that Jesus our Lord is in charge and for just being here for me and everyone. Love U guys!
Went for my second round of mapping today for RADS and found out I was accepted for the 3 week Canadian version (I am participating in a research study) and will get to start on June 5, 2013 - just 1 week from now. I am so happy. It is like they have given me the ultimate birhday gift! Yep, I'll be 52 years old on Friday (May 31st) but I actually think I only look like 42 years old and intend to lie about it as long as I can! Ok, now I will go back to some mindless cleaning and filing of papers. Peace y'all!
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I'm starting cytoxan/taxotere next week. I have chosen to do chemotherapy prior to surgery. Is there anyone else that has chosen this path? I felt really good about my decision, but now starting to have some doubts. Any help would be appreciated.
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cmbernardi-I start a 3 week programs with rads tomorrow. Let's stay in touch with each other! I bought miaderm for skin issues. My NP recommended that i take a tepid shower when i get home,and put emu oil or castor oil on the breast. Any tips you can offer me? Hydration,hydration! and protein consumption too.Wishing ALL of you the best today!
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Cmbernardi and Pattithenurse - I am hoping to get into a 3 week clinical trial (boosts included) but won't know until June 14 and woudln't start until June 24. Taking annual trip to the beach which RO said was ok. I would appreciate hearing about your experience either here or on summet rads forum.
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indenial, I would touch base with your MO about the numbness and tingling in the face. Of course Taxotere can impact nerves anywhere in your body. Are you taking B12 and or B6? I have since my second infusion and think it's made a big difference in the impact on my nerves.
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Oh, hey, Everyone! Today, finally, we got the word that my sweet 16 year old granddaughter finally has clear margins after her third surgery for her phyllodes breast tumor!!! Praising God for answered prayer and doing the happy dance here in San Antonio and up in Dallas!!! She will need to be followed up closely for the next few years and probably for life, but no further treatment is needed now. Yay!!!
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Good news Annie
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So happy to hear the good news about your granddaughter, AnnieLane!!!
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Great news Annie!!
I will mention the numbness at my next appointment... I went to give myself a B-complex injection today to see if that would help, but I managed to break the needle & then stab myself throwing it out so I took that as a sign NOT to get a new needle & try again! I keep messing up injections and don't want to screw up now with low WBC and increased bleeding risk LOL. I will have to get some pills instead. It might be slight neuropathy because I occasionally have a similar tingly feeling in my feet and the very tips of my fingers are a bit numb too. Who knows. Hopefully since it's mild it will reverse itself?!
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Hey gals.... you can certainly keep this thread going no matter if you are heading to rads. I know that each of you feels comfortable with each other.... so please stay here if you like!!!!!
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Regbeach, such a tough spot you've been in. It sounds like there really are no wrong answers. I commend you for being so thoughtful and considerate to your mom being her advocate.
Annie, such great news about your granddaughter!
I had infusion #3 today. First time I went alone and it was o big deal. Now I think, why do I need to take anyone along? It's not like I want much company. I hate to have people see me in that chair. My daughters are with my parents; that's the best way for them to support me at these times.
I was at MDA Houston last week, to the IBC Clinic. I had a hard time getting an appointment, so when I got 2 days notice for a Second Opinion, I went. My doc told me my case was too complex for second opinion, turned my MDA case into a Consultation. I had a number of other tests done before I went home. My case will be presented to the whole team: my doc is the MO, then RO, BS, radiologist, pathologist, researchers, who knows else. I meet with my doc June 7 to hear the recommendations. I feel very confident I will get top, experienced care there. My doctors here have barely treated IBC. -
Pattithenurse - 4 sure we will stay in touch & keep each other informed.
AnnieLane - terrific news! Congrats!
ALL - thanks 4 always being here. Peace, love, ptayers & blessings & Happy Birthday 2 ME!
CB
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cider8- Glad you were able to come to Houston to your case looked at. Please keep us posted. If you end up being treated down here, please feel free to private message me about the Houston Medical Center/MDA area. I was treated at another hospital not far from MDA Houston.
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Hi to all and prayers to those who are needing them. What is going go with me the last 3 days? I wake up in pain; fingers, elbows, feet, legs, hips. Should this not be over by now??? I took last chemo and shot on May 1 & 2. Woke up at 4:39am really hurting. Forced at this point to take a Dilaudid as the pain is bad. Guess it is best to call them MO in a few hours and see if this is just more residual SEs from that last chemo, I guess. Feel like I need a total body massage and then some. Suggestions/thoughts Sisters? Ouch, ouch, ouch!
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Dear ladies, wide awake and starting first round of chemo today. I was nervous as heck but REALLY appreciate all your posts. I feel better but nervous still. Question? Is the fist session indicative if all the rounds or does it get progressively worse each time. I am also really nervous about caring for my daughter who is 9. I am Alone and concerned that ill be so out of it that I can't care for her. I am planning to have extra help tonight tomorrow and over the weekend just in case...
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Anniegirl- good luck today! Hopefully your side effects will be tolerable and call your MOs office for help/meds as needed. Based on what I have read on these boards, some people experience the same SE the same days in their chemo cycle, so it helps to take daily notes on how you are feeling. Also keeping hydrated and walking if you can helped me to feel better. If you are having the neulasta shot, make sure you have claritan on hand, after asking your MO.
During chemo, I also asked to have the full bag of saline dripped in. They did not do that after my first treatment and I felt really out of it - they said it was all of the drugs in my system. I felt better the next day but they gave me the full saline drip next time and I made sure to get it at each treatment.
As for cumulative effects, I found that to be true for fatigue. I actually felt worse after my 3rd treatment than my 4th. After the first round or two, hopefully all of your SE will be managed and there are no new suprises.
Hoping you have an uneventful infusion day! -
Hi Anniegirl,
I am on round 3 of 4. I've found the side effects to be similar & predictable for the most part. Some were worse the very first time, but then I was able to treat them properly for subsquent cycles once I knew what to expect. The fatigue has gotten progressively worse, and for me I've found the "bad" days to lengthen by one day before & after -- so the first round, day 4 was the worst. Second, days 3-5 were worst. Third, days 2-6 were the worst. So I'm expecting the 4th round to feel worst right away and through day 7. And the other thing that has happened for me is round 2 was really complicated by other stuff. I ended up having an extremely heavy (and LONG) menstrual period and was given meds to control the bleeding and then a week into take the meds (while I was still bleeding!) I had an allergic reaction to them that lasted a week. That probably won't happen any other round, but meant for that round I had a lot more dr's appts & ER visits and only felt good for about 2 days that whole cycle. So what I'm saying is, expect some predictability in how you react but allow for exceptions.
I've been able to take care of my 4 year old, but I do have my husband home nights/weekends, and lots of visits/playdates during the day, and a freezer full of frozen dinners so I can spend my limited energy wisely. It's good to line up help like you have already and you'll probably want to do that for each cycle once you know hwo you respond & when your worst days are. You probably won't ever be too out of it to care for her but your life will be much less stressful & you can get the rest you need if you accept any help you can get.
Good luck today, you can do this!
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cmbernardi I am still experiencing significant pain in my legs and my last shot was on 4/24. The weird thing is it didn't show up until a couple weeks after treatment.
Anniegirl hope today goes well for you and you have minimal SE's
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melody 46 - SAME 4 me and it is freaking me out!
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indenial, I had mentioned this previously in a couple older posts, but my MO prescribed Metanx for me. It's a prescription form of B-complex vitamins that as I understand it, is as readily absorbed as the injection. It was expensive, so I rationed it and used it only for the first week after each infusion and used over-the-counter B6 & B12 the rest of the time. I am still taking the otc supplements.
I was very proactive in trying to prevent neuropathy. I tried everything that my MO either approved or recommended. I took L-Glutamine in a powdered form - 1 TBSP dissolved in juice or lemonade twice a day for the first week after each infusion.
My MO recommended Alpha-Lipoic acid, an over-the-counter antioxidant supplement and I am still taking that - 200 mg twice a day. There is some evidence that it also may help prevent recurrence of bc.
I also wore the frozen gel mitts on my hands and slippers on my feet during each Taxotere infusion. My treatment center had these available for me to use. That was pretty miserable, but I think it helped.
I had miserable neuralgia after my first infusion, but not in my hands and feet and I never had it again after I started the above mentioned supplements.
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Annie-please share with that terrific grandaughter of yours that we're feeling alot of joy knowing she's on the mend.....i think about her frequently!
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Thanks Patti! Have you started radiation? I start on Monday.
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one week PFC. Appt set with RO for Tuesday for mapping etc. Still feeling some effects of chemo. Glad to see I'm not the only one.
At each infusion one or both of the pharmacists (mixologoists) would stop in to see us. They said that younger women and those that were premeno had more side effects than those of us that were post meno.
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btdemo
I am peri-meno and I had some of the WORST SEs of anyone. just did my mapping and start RADS on June 5. Best of luck to U and ALL. Keep comments and questions coming so we all stay up to speed. Peace y'all!
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I was premeno and had mild SE's compared to alot of people
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Annie, Well,we're rad buddies! I had my first one last friday,so we're basically together. i am on the accelerated program.........41/2 weeks. It's a very short visit,that's for sure.I'm 65,will meet with MO middle of June. i have documented osteoporosis,and now I'm wondering(worrying) which med i'll be on for hormone therapy! Good luck Monday,I'll be thinking about you. I bought miaderm,and my therapist gave me some healing salve to lube up with. peace.....
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Pattithenurse and AnnieLane, et al,
Looks like we are moving on to RADS together. I went for my second visit for mapping last week and have red and black X's of Sharpie marker in several spots (on stickers). Also, I am participating in a research study in my Center and I start on June 5, 2103. Praise the Lord, I was selected for the Canadian version of RADS which only lasts 3 weeks with simultaneous boosts as opposed to the American version which runs 4-6 weeks with boosts thereafter. I will report in often and I hope you both will to so we can compare notes. All the best to you on this new and unwanted journey. Have a blessed week and Peace!
CB
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Yep, it's good to be together again, or still! I've been reading and posting on the thread "Summer 2013 Rads." I get my medi-port out on Friday - I'll be so glad to get rid of that thing, but it served me well while I needed it.
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Cmbernardi-That's soo interesting what you typed. I'm in the Canadian study and I thought I was getting simultaneous boosts daily as well,but I think I'm doing 4 1/2 weeks,and then 6-7 days of boosts. Hmmm,now I'm wondering? I'll have to clear that up on Tuesday when I see the RO. Well,we're off to the races girls..........stay in touch.....peace.....
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pattithenurse
Hmmmmmmmmmmm........... ???????????
AnnieLane - say bye bye to the port. I did not get one and had some trouble with burned skin on my hands. Oh well, on to RADS now gals!
CB
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I have appt w/ RO tomorrow and am really nervous about rads. I would have thought the chemo would be more nerve-racking. Not sure why I'm feeling this way. Anyone else have this kind of anxiety?
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btdemo, on the Summer 2013 Rads thread a few other gals have expressed similar anxiety. I am just so glad to be through with chemo, that I'm really not worried about rads. It probably helps that it's my right breast, so I'm not worried about my heart. I understand the recently published studies about heart damage are citing twenty year old data and old methods of rads delivery, though.
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Thanks AnnieLane, I will ask my RO. I am left sided but I have heard they have techniques to "bend" the rads away from heart/lungs/spine.
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btdemo and AnnieLane
I start RADS tomorrow and up until today have been OK with it. I woke up this morning with a huge amount of anxiety over starting RADS tho and I am shaking in my boots. I feel like a kid who knows her Mom is taking her to the Doctor - stomach ache and shaking inside! I will try to b strong but I have the same concerns as my BC is left-sided. I will have a long talk with the RO tomorrow and perhaps seek some counseling too. WHY is this so flipping HARD everyday? If anyone wants to talk it out by telephone, PM me and we can have a good cry together. Gotta go now as the tears are makingit hard for me to see the keyboard. Peace and Blessings to U Sisters and all the BEST!
CB
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cmbernardi- So sorry you are having a time right now. All I can do is send you many many virutal HUGS and let you know that you are not alone going through this. If you need some anti-anxiety meds, get some to help you through this tough spot. If it's counseling you want, get it. You need to get into a comfort zone with your treatment. I can tell you that life does get better and you will discover that. Until you do, we are here for you. Just remember you have been mapped and have had a test run before the first day of Rads. There is a science behind RADS and how and where they are administered which have involved engineers, physicists as well as the doctors. I know what I'm telling you won't take away your fears but hang in there. Thinking of you and sending many positive calming and healing prayers, thoughts and energy!!!
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Melrose - thanks so much for your kind words. And a fellow Texan too. I ma a transplant but got a driver's license and changed the tags on my car. I will be in Houston in a few months for my professional association's annual convention, The American Dietetic Assoc. Yes, I am an unemployed Registered Dietitian but the CEU requirements do not go away. Perhaps we can meet for coffee or a cocktail sometime. I will keep U posted on the dates. Guess I should go to the ADA website and pay for my registration and find a hotel, huh? I hope to be able to scrape up enough $$ to do so. Again, thanks for your kindness and support. I am going to distract myself soon by going out for lunch with 2 friends here. I am going to introduce them to Pho at the Grapevine Mills mall. Yum, Yum! Peace and blessing to you Sister.
CB
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CB- would love to meet up. Just let me know when you are heading this way..... Be easy on yourself. You are doing great!!!!
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Melrose - just checked and the conference is in October. Housing on the ADA website does not open up until June 14. I will ask your advice soon about the logistics of Houston and where to stay. Thanks. Hope to C U soon.
CB
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CB- I see that the convention will be downtown at the George R. Brown Convention Center. You will be easy for me to find.
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Melrose,
Cool!
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Had my appt with RO today. It went well, got mapped and marked. Asked all kinds of questions and they were answered thoroughly. Not sure why they made the RO appt for day 11 after chemo infusion, I believe that is the low nadir (?). I did take an Atavan before the appt, which helped my anxiety. Got home and slept for 4 hours!
Thanks for all the info, help, tips, and comfort. It REALLY does make a huge difference when confronting these crazy bc issues.
Good vibrations to all!
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Having my mediport out in four hours - doing the happy dance!! This makes me feel like I'm officially through with chemo
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Congratulations annie lane!!!
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AnnieLane- hooray- another treatment milestone behind you!
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Congrats, AnnieLane! I was so happy to get my port out. It made me feel 'done.'
I found out I need to do 6 rounds for sure. So, I'm halfway finished! -
Way to go AnnieLane!!!
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AnnieLane- Yippee on the deportation!!!! Definitely one more step forward!!!
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"Deportation" - I love that Melrose!
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Hi all, Hope everyone is having a good day, I have a question. I have had my 2nd of 4 treatments and my nails are still intact, If they were to lift or turn black or fall, when does that happen????
Trying to be careful, keeping them short and polished, but really worried.
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Worrywart9390- Not everyone experiences nail damage from the chemo. I know a few who did not ice and didn't have nail damage and didn't ice. The lifting/discoloration can occur at any time so not easy to give you a time frame. I iced my nails during the Taxotere infusions at all 6 rounds of chemo. I was fortunate that I didn't have any lifting or very dark discoloration.
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ty melrose, lucky for you, i haven't iced, just wondering like our hair if it was pinpointed to a time frame. I 'm hoping it doesnt happen for me either, cant wait till i can say, my hair is back, my nails are good, NED, etc. etc. etc.
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Worrywart, in addition to icing, I used Sally Hansen Hard as Nails, which I read on here that some centers give you in a package from the makers of Taxotere. I have had no nail issues and I am about 5 weeks pfc.
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Worrywart
I never iced or did anything. I had the very slightest, slightest faint white line...four of them to be exact, one for each treatment I had. My nails were a little brittle but I just rubbed some sally hansens cuticle oil on them each night. They were fine.
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My nail experience was the same as Starynights. I would add that I had some brown discoloration as well. Because they were brittle, I kept them short, and well lubricated with Curel Hand and Cuticle cream.
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You ladies are awesome!!!! Just wanted to tell you that because each one of you continues to forge ahead and not let anything stop you from moving forward!!! I know the emotional and physical highs and lows can be frustrating but in time you will come to understand that you are all so much more stronger than you ever thought was possible. Sending a round of virtual (((HUGS))) and lots of positive calming and healing prayers, thoughts and energy!!! No matter what, it's all good!!!
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Thank you melrose! Just what I needed to hear today. Having a "low" day. 18 days PFC, muscles still hurt, stamina low, anxious about rads on Monday... It'll all be okay.....
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I'm hopeful my nails will be ok...i have been keeping them short and polished i think with sally hansen hard as nails, will have to check when i get home. even though i still have a lot of hair on top of my head, it is still falling out daily.
have a great day everyone!!! the sun is shining here in new york!!
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I also iced for each of my 4 treatments and had no problems with my nails, not even discoloration.
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my center doesnt let me ice or do cold caps or anything, the most they let me do is chew on ice chips!!!!!!!!!!!!!!
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I don't ice. I didn't the first time I had chemo and I had no nail problems. I did see some horizontal ridges, mostly on my toenails, as they grew out in the following months. I also kept nail polish on my toes and a super sheer nude color on my fingers.
I'm doing the same this course of chemo, mostly because that's what I always do.
My infusion room is pretty cool, as in temperature. I wear flip flops or sandals. During Taxotere I just make sure I'm sort of cold, no blanket or sweater, and I switch holding my ice water bottle. I have NO idea if that makes any difference, but icing seems like a PITA for me (for me! no judgements!). I've never seen anyone ice at my infusion roon. When I'm done I ask for a blanket! I do T first, then C.
I suspect the nail damage is dependent on the dosage and individual. -
Sisters,
Sorry to here of all of the nail problems. My nails were CRAP until I took chemo. and it actually made them much stronger! Go figure. Also, when I am outside on the patio here or in the pool, the bugs do not bite me. Huh, must still have all of the poison in my bloodstream, huh? I still do have intense joint pain in every part of my body tho. Made an appointment with my MO for Friday to discuss that issue and also to discuss this potentially upcoming ovary removal. Really! I just do not want to get that done at all! In fact, what I hope to do if he agrees with me and says I do not have to get that done is pack my new Jetta to the gills, toss in the fat little Pug and get the heck out of TX. for good! So many family issues going on here with my 17 year old ADHD nephew that I just want to "go home" and help my folks out as much as possible. Of course I WILL have to find a job sooner than later as my funds seem to be dwindling very quickly. NUTS! Wishing everyone on this site a peaceful and pleasant day with no SE's. Peace y'all!
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Carolyn, I also observed that my nails seem to have become stronger during and since chemo. I wondered if it was all the supplements I was taking. And the mosquitos still don't like me nearly as much as they always have. Hope that lasts awhile!
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AnnieLane - Cool! Hope your RADS are still going well. I have had 6 of 15 treatments and it is a "walk in the park" compared to that darn chemo. Peace and Blessings to you and ALL of my Sister Warriors.
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Anybody experiencing for the first time? burning in hands and feet following last treatment on May2nd. Is it from Taxotere. I ran out of the Lipoeic(sp) Acid,and I'm wondering if I need to get more. I'm almost half way done with rads..going pretty good. Skin is starting to pink up,tissue is slightly swollen,but I'm cleaning house today! Take care women. Any input would be appreciated.....thanks......
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Patti, I'm not taking the Alpa-Lipoic Acid during rads because it's a strong anti-oxidant. My RO didn't tell me not to take it, but I want to play it safe in case the anti-oxidant action might interfere with the anti-cancer effect of radiation. I am still taking over-the-counter Vitamin B12 & B6 though, which I think have helped me a lot with the nerve pain. I would guess that you are still feeling the effects of the Taxotere, but you probably want to talk to your MO about this.
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Question: I have a butt load (about 84 pills) of Tamoxifen here in a drawer that I will NEVER be able to take again. Can anyone out there use it? I will be happy to mail it right out. Send me a PM with your mailing address please and "first come, first served"!
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Is anybody on Tamoxifen yet? Melrose help! these hot flashes are awful
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I'm on the Tamox and have been since September. Fortunately, my hot flashes are about the same as they were on chemo--- not so hot but still a little warm at times. If you are having a lot of problems with those hot flashes, talk to your onco about Effexor; supposedly helps those hot flashes. I don't take any Effexor. or any kind of supplements to help with the hot flashes. But do ask your onco about what you can take or do if those hot flashes are unbearable. You probably need some relief!!!
I do notice more at night than during the day. I keep an insulated mug of ice and cold water on the nightstand so I can get some cold water without having to make a trip to the kitchen in the middle of the night. The blankets on and off is a nightly ritual but not too bad. I try to sleep in cotton at night to try to stay cool. I've been told that Soma has some "wicking" pjs that help with the night time sweating.
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Melody, I'm starting Tamoxifen in less than a month... are the hot flashes worse than chemo+steroid hot flashes??? ::shudder::
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dont want to scare you but hell yes they are for me
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Thanks Melrose, I'm starting to think maybe coffee is a problem and wearing wigs and hats definitely doesn't help. I have the same night time ritual with the sheets and blankets but that is actually getting a little better. Its the day time stuff thats really bothering me. I am taking effexor 1/2 dose at night but its not helping the day time stuff, he told me I could take a dose in the morning too but I'm not too sure I want to be on it at all.
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Hi all!
Well I am one week away from my last TC treatment. AND BOY! and I ready! I don't need rads so if all goes as planned I will go on Arimidex in mid July and have my exchange surgery in mid August. WHEW! I start school in ear;\ly September. IDK if you know this but an uncompassionate boss let me go after my first treatment stating something about not being a good match or some nonsense. So I will take that and change my life! School for massage therapy so I can help others and eventually buy a currently operating business that's for sale..lock stock and barrel and only I can fire myself in the future! loll how long after last treatment will fatigue subside? How long is recovery from exchange sugery?
hope up are all having a good week so far
gentle hugs to you all
runnermom
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melody- You may want to try the 1/2 dose in the morning to see if it helps. I know you may not want to take it but it is worth a try so you can see if it really makes a difference for you. I know of several gals who are on Effexor and the quality of their lives has greatly improved. I know what you mean that you don't want to take any more drugs than you have to. If you are wearing wigs and hats a lot, you are right..... those could be the culprit. Please don't think I don't get those hot flashes during the day because I do. I just get a glass of ice water/lemonade and forget about them. I drink only one cup of coffee a day. Hope the temperature of those hot flashes go down soon for you!!!
For those who haven't started Tamox or Arimidex: Please make every effort you can to start taking the drugs soon after your onco has prescribed them. Try not to sit and stare at them because you are afraid of the possible side effects. Those little pills are so powerful and are there to help us. If you have side effects, note them and talk to your onco. As for the time period, one will need to take them, I don't focus on that aspect. I view the Tamox like I do my blood pressure medication---- I just need to take it for maintenance.
Runnermom- The post chemo fatigue factor does get better as you have more weeks and months PFC under your belt. The first 3 weeks post chemo are the same as with all of the prior chemos; so don't expect to be running around full of energy during that time. As your blood counts start to recover, you will start to feel a little better everyday. I can't really say how it will be for everyone since everyone reacts differently to the chemo. I can tell you that within 6 weeks of being post chemo, I did feel less tired. Eating healthy and well, getting plenty of rest and good sleep and of course exercise will help you recover. I didn't have any recon so I can't tell you about the exchange recovery time.
Wishing all of you the best..... you have done well!!!!!
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Thanks Melrose I suppose it cant hurt to try. Runnermom I started feeling better around 5 or 6 weeks as far as energy goes.
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Ms. Runnermom - that former boss of your was a complete JERK! Unfortunately though, the same thing happened to me in May of 2012 when I started to get really sick from the onset of peri-menopause. Was nauseated and dizzy all the time and barely able to get out of bed. So, long story short, I was told that my Microsoft Office skills were not up to snuff and they let me go as well. Not too soon after that, my soon-to-be-Ex husband told me HE was not up to hanging around the house to take care of me. I kicked him out that day and sold MY house in Northern Virginia and did not have to share any of the proceeds with him though. HA! Funny thing is when I finally found a doctor to treat me for that awful sickness, the "cure" was going on birth control pills which definitely did the trick but 6 months later I was diagnosed with the BC. Then, God heard me ask my MO if I could go skydiving for my birthday in May of this year and the next thing I know, I stepped in a hole in my Sister's yard while trying to plant flowers and broke my left foot. What the heck is next I ask????? Anyway, BEST of LUCK to you in school and as a massage therapist. It sounds like you will be great at that type of work!
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cmbernardi, you have been through so much, my heart goes out to you and everyone dealing with the negatives our lives bring us sometimes. I am sending positive thoughts your way and hope and pray for so much better for you in the future.
One day at a time is what I keep telling myself...one day at a time!!!
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Thank U Worrywart. I really appreciate your compassion. The last year has really been bad and I can only hope and pray that things begin to improve a bit. Hugs to all!
Carolyn
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Hi Ladies,
I'm a total newbie to this site and would like to thank you for all the good advice I have read so far.
I have just completed my 3rd of 6 TC treatments. Talk about side effects! My immune system was already borderline weak before I started, but now it is just shot! I swear I have experienced the whole list of side effects caused by TC...lol. The worst from chemo #1 was the bone pain and stomach burn. I also had a hard time with hair loss. The worst from chemo #2 was muscle/joint pain, stomach burn and hives all over including on my palms and soles which landed me in the ER. Today is day 2 of chemo #3 and so far I have headache, weakness, fatigue and no appetite. Not looking forward to what the rest of the week has in store for me.
Anyways, as I am constantly hearing, "stay positive", is what I'm trying to do. Can't wait till this is all over. -
Serena, I had #4 of 6 today. This go around of chemo has not been as harsh as my first time with DD AC/T, but it's still SUPER crappy! I had to learn early on to think of all this treatment as only temporary. That's how I got through treatments so far. It's temporary and I've had to shift my expectations and priorities. I've always been more of a quality vs quantity kind of person, and treatment has really helped me to focus more on the quality of time I spend.
Take care of yourself as best you can. People can handle treatment differently. I beat myself up early on the first time, hearing about how some people 'didn't skip a beat' during chemo. While I was in tears I felt so bad, couldn't get out of bed, read, watch TV, much less keep to my normal routine. Then I figured out the difference in chemo plans (ie: the TC is easier on me than DD AC/T). THEN I figured out people really can tolerate chemo differently.
I got a head to toe rash from my first dose of Taxol. It was horrible! The itching was so intense! I went on steroids for a week to control it. So I feel for you. No rash reaction from the Taxotere though. My first dose was the most intense as far as the bone pain. -
Cider8, sorry to hear you're going through this for a second time. I am inspired by your words and reminded to count my blessings. I do realize it's temporary, and have had to reorganize my life as well, sometimes on a daily basis. Not only am I stuck in bed suffering from SE, but I am also faced with financial hardship, inability to get my degree this year as planned, and my relationship is falling to pieces. I do, however, have great support from my family, and my children are my motivation to get through this so that I can be there to see them grow up. It would be nice if my man was there for me as well.
It's hard to always be positive. I do vent once in awhile because chemo REALLY sucks! -
SerenaLL- Welcome and glad you have found this group. Some have finished and moved on to rads but this place will always be here to chat and get some support. I know it's hard to say, the world is wonderful and everything is wonderful when in fact, things are not so good. Just have to take one step at a time and one day at a time. Sooner or later, the not so good moments and times will be replaced with good moments and good times. Yes, this path affects not only us but also our families, our friends, our relationships and plans. You have honed in on the positive aspect of this even though you may not see it right now. You know what you need to do to get healthy and you know that it is important to you to get through all of this. Try to be easy on yourself. Right now, the time in chemoland is like a job---- it's your job to do the best you can to take care of yourself ( eat well, rest, exercise). Once you are ready to move on from chemoland, you will begin to see that your efforts really did pay off for you. Sending you lots of HUGS!!!!
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Good grief! #4 is really kicking my butt! So weary, weak, achy and sleepy. Makes me weepy! Only day 3.
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Cider8- Sorry that this latest round got you. If the tears are flowing, let them. Try to keep a little something in the tummy, hydrate well and rest, rest , rest. Hope you are able to take it easy this weekend.
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Paula, my fourth hit me so much harder than the first three. Hang in there!
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Paula-I too as well really felt round #4. Bizarre miserable. I crawled from that hole on day #5. Trust me,it will get better. Powerful poison this stuff is. I rested but didn't really sleep that good. Wishing you the best...................
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Finished Chemo on May 2. Most SE finally gone away. Havent posted in a while but have been lurking. Just trying to keep it all together and work is about all I can handle. Starting my second week of rads, so far so good. No pinkness only a slight sensitivity in the tumor and incision area. Not sure if its in my mind or not. Doc says Ill pro start getting pink in a week or so. Still kind of tired but not sure if its stress or rads. Dont see much difference in the fatigue now and before chemo. Glad to be back to the board and hope you all are managing your SEs well.
Angie
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Angie, rads made me tired and I was more than a year out from chemo. Rads made me sleepy tired.
So I got through the dog days of #4. How did everyone fare for #5 and #6? My MO said #6 would be rough, but she didn't say anything about #4. I am scheduled to travel to MDA Houston right after #6, so now I'm dreading it. #1 was worse than 4, though. -
Cider8 (Paula)- I can tell you that I was definitely more tired the more rounds of chemo I had. I felt a little more out of breath with each round. My usual side effects of taste buds going on vacation and feeling a little off for a few days stayed pretty much the same. I did notice that my muscles and joints did ache when I first got up out of bed or was sitting down. I never felt steady on my feet when I would first stand up. I also noticed that my bladder muscles were a little weaker and I had to always hurry to get to the bathroom in time. Just keep eating well, rest whenever you can and get a little walk in.
BTW: If you need any help or have questions about the area around MDA Houston, let me know. I live 15 minutes away from the Medical Center/MDA area.
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Melrose, I'm most worried about sudden intestinal issues! I will plan on preparing myself as best as I can with diet and rest. I have been enjoying myself with my Houston visits. If you think of it, I could use some restaurant recommendations near MDA: less pricey, more healthy. I have enjoyed Nico Nico's, Pappadeaux (good but over priced!) and Lupe Tortilla. I did have time to see the science museum, too.
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Paula- Here is a quick list of places to eat close to the Medical Center. There are a lot more places to eat than I listed for you here. The places I listed are places I eat on a regular basis and ate during chemo. I posted the links for the eating places so you could see on their maps exactly where they are located. There is a really good family owned cafeteria called Cleburn Cafeteria ( Link: http://cleburnecafeteria.com/ ). In Rice Village and in the Galleria, La Madeleine is a another relatively inexpensive place to eat ( Link: http://www.lamadeleine.com/locations?q=77005&go.x=15&go.y=10). In Rice Village, other restaurants to eat at are The Black Walnut (breakfast, lunch, dinner // Link: http://www.blackwalnutcafe.com/rice.html); Le Peep ( breakfast & lunch// Link: http://lepeephouston.com/locations/ ). Some other restaurants on Kirby and the Southwest Freesay (aka 59) are Goode Company BBQ ( Link: http://www.goodecompany.com/restaurant-bbq1) , Goode Company Seafood ( Link: http://www.goodecompany.com/restaurant-seafood1) and Goode Company Taqueria ( Link: http://www.goodecompany.com/restaurant-taq ). The Goode Company restaurants are located very close to each other off of Kirby and Westpark; before you get to the Southwest Freeway. Another reasonably priced Mexican food off is at 2925 Southwest Freeway --- Guadalajuara ( Link: http://www.guadalajarahacienda.com/locations) . Another place to eat bbq is Demeris BBQ at 2911 S. Shephard ( Link: http://www.demeris.com/Locations.php).
If you need any other info, let me know. Happy to help you and hope that you are doing okay.
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Checking back in with you all. I am 6 weeks out from chemo and had a followup with my MO today. Got a prescpription for Arimidex and filled it with the generic anastrazole. Also had my 17th radiation treatment today and that's going OK so far. Still having some fatigue, but feeling pretty decent overall.
My hair is coming in but looks like a crew cut. Nevertheless I went out "topless" today. I'm just sick of covering my head in this heat. I figure as long as I wear earrings and makeup it's not too bad. I remember when my kids were into Sinead O'Connor (they are now 40 & 38!) It worked for her and she still sports the crew cut look. I looked her up and figured if she can do it, so can I!
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AnnieLane- You go, girl!!!!! Rock that diva edgy look!!! You definitely are making the transition to no head coverings just fine. You just have to decide that temperature-wuise, it is so much better without a head covering on in the summer. You may want to wear a straw hat when you are out in the sun so your head won't get sunburned. I've bought a few hats from Target which seems to be a good place since they are cute and not too expensive. So glad to hear that you are doing well with the rads.
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so happy for you annielane!! and so glad you go out feeling comfortable, that is the best!!!
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Melrose, thank you for the info! It will be helpful for sure.
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Wow... I can't believe how wonderful this thread is. I tried to start one for those of us starting in July, but can understand why no one has jumped on that thread... This is brilliant and you all are unbelievably inspiration and helpful beyond words. Thank you brave ladies of feb/march. I start in just 3 days now. Scared but ready.
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Hi Ladies, so glad to find this topic! I started my TC treatments June 7, have just had my second round. First time out, felt pretty good once I'd gotten past the first week. The muscle aches, bones, all made it hard to sleep, then became dehydrated from the diarrhea. I now have Percoset to manage the pain and get some sleep and will be more vigilant taking care of the digestive issues. Hair loss at 14 days, so I've shaved it off, and have to say it's quite nice in the heat of the summer we've been having, although I hate seeing myself so bare. My onc says to be prepared for more fatigue as I progress through treatments. I'm a single mom taking care of a house and two pets, so I pray it doesn't become too much. I have tons of support from friends and coworkers, so I give thanks for them every day, although haven't had to call out the "troops" yet. Will be taking a big family vacation in a couple of weeks, Ireland (!!!), so I am hoping to feel pretty normal during that time to enjoy ourselves. I offer my support to all of you, and congratulations on your passage down this difficult road. It's so helpfu to know we're not alone.
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WELCOME KICKINITGOOD AND RDHDCHICK!!!
Glad both of you found this thread. Just want you to know that this thread will stay up and running as long as there are people like you who post here for support and help. You just need to post your questions about what's happening with you and your chemo experience. The support and help is only a click away here. I know both of you are apprehensive and still a little anxious of how you will do with the chemo rounds. Yes, it's true that you may become more fatigued as you have more rounds completed. Do your best to eat well, sleep well, rest whenever your body says to rest and get a little exercise everyday ( walking is always good). As you have probably read, hydrate hydrate, hydrate. If the water is getting boring, try water with fruit in it, gatorade, watermelon, popsicles, grapes, etc. If you aren't icing and have already started chemo, it is never too late to start icing your nails. The learning curve for how to handle side effects/what to expect is huge; but once you know what to expect and how to handle the side effects, you will feel a little less anxious and scared. There is power through knowlege here. Again, let us know how you are each doing and of course keep coming back here with your questions and for support and to vent. Wishing both of you the best!!! HUGS!!!!
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Just stopping in to say that I made my "topless" debut (nothing covering my head
) at a church social get-together this evening and it was so freeing. My hair is starting to come back and everyone said I looked great. Of course these were all friends, who would say that anyway, but still it was great to hear it, even though I know my pink scalp shows through the thin white hair on top.Welcome to the newbies! There is life after chemo and I'm just starting to get mine back. I'm seven weeks out from my last treatment and feeling better all the time. If there was ever a time in your life to focus on taking care of yourself it is now!
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I don't miss the chemo, but I miss my chemo thread! I'm on day 12 of rads. My RO is...different, not as explanatory as MO or BS (my fav). I'm not getting a lot of feedback from him so I look to my chemo and rads threads to get info. I'm 5 weeks out from chemo and my fingernails (I have the "ridges" from mid-chemo) are now getting tender, and the white part under the tips has been expanding and heading toward the cuticle. Is this just another SE from chemo?
Welcome kickinitgood and rdhdchick. You will get lots of good info and support here. Melrose and the ladies here are super.
Good vibes to all.
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Hey, BTDemo, good to hear from you. I had rad #22 of 25 today and so glad I don't need more than 25! I'm having the same experience with my RO. He's been on vacation for most of my treatment time, so once a week I've been seeing different doctors. Then when I finally saw him after 4 weeks he just said he thought my skin looked fine after just glancing down the top of my breast and then went on to tell me all about his vacation in Europe. I'm glad that he's friendly, but give me a break! I have an angry red rash under my breast that he didn't even see. The rad threads have been so much more helpful!
I've survived one week on Arimidex so far, too.
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Hi AnnieLane! glad you are almost done with rads. Sorry you have a similar experience with RO. From what you describe it could have been my guy. They ask how you are, you tell them, they change the subject. And the 2 second breast exam (I time him, lol) Very weird. I agree with you about these threads...much more helpful and supportive. I won't start hormone-blocker till a couple of weeks after rads. Sounds like you might be adapting to Arimidex pretty well, very nice.
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Well,I graduated from rads today. RO said a mammogram in 6 months,and if it's okay then every year. Well, this diagnosis happened for me within a year,and I'm not going to wait. I'd rather catch this guy before it spreads to a node. i'm supposed to wait a week for taking that little white pill. I'm going to enjoy this week. Enjoy these summer days women!
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Patti, so glad you're done with rads! I'm three treatments behind you, can't wait to be done. I had a followup with my surgeon today and I'll be having my next mammogram in September.
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I got enrolled in a clinical trial yesterday. The study is to try and find out why some women get muscle and joint pain on Arimidex and some do not. They will take some blood for genetic analysis before I start taking it and then I will keep a journal. I'm hoping I won't get the joint pain, but if I do, at least I will be helping them find out why.
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Hi all-
I usually post on the may or april boards- but thought I would share this info with you all too. A friend of mine told me about this program at the YMCA. Its free ( i think) to cancer survivors. I am definately looking into it since my stamina is totally in the toilet. Here's the link:
http://www.livestrong.org/What-We-Do/Our-Actions/Programs-Partnerships/LIVESTRONG-at-the-YMCA
I am day 12 post TC # 2. It has been a little easier than #1 but still crappy! Hope you all have a great day!
Kerri
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Time flies when it's someone else! Hard to believe some of you are finished or almost finished with rads! It's fantastic. I really like my RO, even though she missed my IBC (she wasn't the only doc to miss it). She really listened to me and took way more than 2 seconds with the weekly breast exam. I hope I like my RO in Houston as much.
2 more rounds! So sick of feeling sick and tired. I can't wait for it to be behind me! -
Congratulations on ringing the bell Patti! I think I saw my RO two or three times and he wasn't very informative either, my BS was my favorite also. btdemo I also have the problem with my nails they have rings at the base where they are growing out (one for each treatment) I feel like a tree. Also have a couple nails where the white part is heading toward the cuticle. I cut my nails fairly short and quit messing with them, I'm also using tea tree oil.
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cider8: hope you have an equally great RO in Houston. Communication and information really does make a difference. Only 2 more rounds for you! Woot Woot!
Melody46: thanks for the feedback. I also cut my nails short and laquered them with Sally Hansen's clear (to keep them from snagging on something and tearing).
kobrien: thanks for the link, it looks awesome. There is a Y pretty close to me that offers the program.
There are so many little things that seem to show up and are difficult to sort out: is it left over from chemo, new from rads, or some other unrelated (or related) issue. Need to watch everything to try to determine if it is significant or not. Thank goodness for these threads!
peace to all
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Good for you Annie. Remember to keep lotion on the breast for a couple of months for healing. And let's try and stay in touch with this pesky Armidex journey. I'm taking turmeric in my smoothy. The NP has me on a med to reduce bone loss. The journey continues...........................................................................!!!
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Icing the fingernails? Haven't heard that one.....what do I do? They seem fine so far, but I've just had round two last Friday.
Rash on my head, too, but I found a board where someone recommended Hibiclens, so I've been using that for shampoo and I put Aloe Vera gel on it to cool the bumps. It seems to really be helping.
Thanks ladies for the support!
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rdhdchick- Hope this helps. If you have questions or don't quite understand, please post your questions.
FOR THOSE ICING NAILS : Always clear anything you want to do with your oncos. You will need to clear it with your onco about icing since not all oncos will allow icing during the infusions. The Taxotere icing time period is 1 1/2 hours ( 15 minutes before the infusion, 1 hour during the infusion and 15 minutes after the infusion. For Taxol, the icing period is 3 1/2 hours ( 15 minutes before the infusion, 3 hours during the infusion and 15 minutes after the infusion). At the suggestion of my onco, I am using clear nail polish on my nails to help keep them strong and also icing the nails to help prevent nail damage which is a side effect of Taxotere. She suggested that use Sally Hansen Strong As Nails Clear Polish but I switched to Essie polish since it doesn't chip as much as the Sally Hansen brand. Essie polish costs more but for someone like me who never used nail polish before chemo, the fewer times I have to apply polish the better. I don't mani/pedis but some do. I'd rather avoid the germ issue at nail salons and taking of a chance of getting nicked.
ICING :
- Time period for icing- You will for 1/1/2 hours in total= 15 minutes before the Taxotere infusion + 1 hour during the infusion + 15 minutes after the infusion. For Taxol, the icing period is 3 1/2 hours ( 15 minutes before the infusion, 3 hours during the infusion and 15 minutes after the infusion).
- Ice- You can use frozen peas in quart size ziploc bags marked "Do no eat!!!" and reuse those bags of peas. Some have used small reusable/refreezable ice bags you can get at the drugstore in the first aid department. I opted to use ice. I have an ice tray that makes small rounded bottom circular ice. I tried the peas and decided I liked the ice better because I thought it stayed colder longer. My infusion center has ice available for me to use if I want to use it. I always bring an extra bag of ice just in case I need it.
- Transporting ice to infusion center- I use a cooler with a freezer pack plus take extra infusion ice bags.
- What to put the ice bags in- That is a personal preference. Some just put the ice bags on their feet and wrap a blanket around them so the bags don't fall off. Some use insulated lunch bags and put the ice bags in those. My hands and feet are small so I'm using some neoprene wine cooler bags that I bought at Target for $6.99 each. I figured I could use the wine bags later on. I'm still able to hold an insulated mug so I can drink really cold water and eat ice during the infusion. I have pretty small hands/feet which explains how I am able to use those Neoprene wine bags.
- Hand & Feet Protection- I wear thin sports socks on my feet when I ice the toes. The socks keep the rest of my feet warm during the icing. On my hands, I wear a pair of knitted wristlets/fingerless gloves to keep the rest of my hands warm. If you don't have knitted wristlets, you can make some from men's socks by cutting holes in the toe area. Some people take their feet/hands out of the ice periodically; however, I don't do that.
- Process- I let the infusion nurse know that i'm icing so we can coordinate when I should start the icing. Once I know when I'm going to start the infusion, I put the ice bags in the bottom of the Neoprene bags. I put the ones on my feet first and adjust the ice bags so my toes nails are covered. I then put the ones on my hands on and adjust the ice to cover my fingernails. My husband helped me with this process.
Also to help protect your nails and hands, use rubber gloves when washing dishes or cleaning around the house. Try to learn to not use your fingernails as tools--- no more opening cardboard boxes and no more using the nails as staple removers. Make sure you use some kind of cream/lotion on your hands and feet since they seem to dry out rather quickly with the chemo.
If you have any questions, please ask.
Wishing all of very peaceful and fun holiday weekend and a round of minimal side effects for all!!!!
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My center had mits for my hands that were frozen and always offered them to me. Ask your center if they have them.
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Thank you! I'll ask about it when I go in for my blood check tomorrow. I hadn't heard of this before. I hope it isn't too late!
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My center also had the frozen gel mitts as well as frozen slippers. I used them for each of my Taxotere infusions. I had no nail problems at all, but more importantly, I had minimal peripheral neuropathy, which was my main reason for icing.
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Hi everyone. I iced for my taxotere treatments on the advice of my hospital. My last chemo was may 8, and I thought I was clear, but yesterday my big toe nail fell off! My left thumb nail is starting to feel weird also. Grrrrr. I'm still taking glutamine and b6 for neuropathy- which I still feel, but you know what -I don't care because I got PCR and am so thankful for that! Hope everyone has minimal discomfort and a great weekend!
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Hi All...first time posting on this thread.
I completed treatment three and a,week in had an allergic reaction reaction to something. On the 4th my lips and both hands swelled along with red itching blotches all over that come and go. Occasional weasing. MO says it's odd it occurred on the 3rd round and we may have to change my treatment. Did any one experience such a thing....did they let you continue? Make any changes? Thanks -
I have heard of allergic reactions that began with the 3rd round of chemo. I know of one person that this occurred and her onco decided to make sure she was given extra steriods and benedryl to help counteract the allergic reaction. She was closely monitored closely during her infusions and may have been given extra IV fluids.
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elkatho I had a really bad reaction to my first two treatments like dr's running at me to get benadryl in the iv because I couldn't breathe. FINALLY on the 3rd and 4th treatment they had me take more steroids ahead of time and after treatment for an extra day. But most importantly they slowed the drip way way down and only upped the flow every 15 minutes they call it desensitizing. This made a huge difference and I was able to continue with the CT regimen. Are you doing 4 or 6?
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Melody sorry to hear you went through that, sounds supper scarey. Glad they got it under control for you. I am schedule for 6 treatments.I already take steroids the night before, day of and day after along with benaryl and steroids in IV before chemo. I've had no problem during infusion but I am sure suffering now one week out. Swelling is down but continue to get red itchy hot patches on my skin. It comes and goes. I am on a steroid for one more day and take benaryl to control the itching. It has been 4 days now. If it continues tomorrow I will call Dr again. I had a second opinion from a MO and he suggested only 4 treatments. I am definitely keeping that in mind.
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Elkatho, I'm looking at your diagnosis and thinking you might seriously want to consider stopping at four chemo treatments unless there's something I'm not seeing in your signature line, like a high Oncotype DX number or unless you are much younger than the average BC patient. You will see all my DX stats in my signature line for comparision.
My MO started off saying I would have four treatments and then two more if I tolerated them OK. Whenever it came up, he said that "six is better." I started noticing that on these boards most of the gals who were having six treatments had some higher risk factors I didn't, like a high oncotype score, triple negative tumor, lymph node involvement, etc.
I would not have hesitated to endure four treatments if I thought the two extra ones would have significantly reduced my risk of recurrence, but as I began to do more of my own research and read articles about chemo on this website, I began to question that. I became concerned about delaying radiation treatments too long and it also seemed like the five years worth of "anti-hormone" therapy was probably a more important piece of my treatment plan than chemo anyway.
So after my fourth treatment, I told my MO that I wanted to stop and explained my reasoning. He had no arguement at all and was just fine with my decision. When I had my followup with him 3 weeks after my final and fourth chemo treatment, he said that he thought I had been "well-treated" with the four CT infusions.
I like and respect my MO a lot, but I ended up with the impression that he'll do six treatments for all patients who can "tolerate" them and don't object. It just didn't make sense to me to do two extra treatments just because I could tolerate them. So now, when I would have been just recovering from that sixth chemo treatment, I'm almost through with radiation and have started Arimidex. I feel very comfortable with my decision.
Of course you have to make a decision you feel comfortable with, but given your diagnosis and the fact that at this point you don't seem to be tolerating the chemo very well, I think you need to take the attitude that this is your decision to make.
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Annie: I agree with you! My stats are very much like yours and I am doing 4 treatments, last one will be on July 9th. My oncotype dx was 19, and as you can see I had synchronous bilateral bc! I have not read anywhere that six treatments are better than 4. I have also noticed that six are given with node involvment or TNBC. My onc has not even suggested 6 and I have tolerated pretty well so far. IUnless my MO had a really good reason to do 6 I will certainly stop at 4 as each round has been a little more difficult to tolerate and recover from.
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Thanks Annielee and Gully I appreciate your input. I had a mammaprint which came back high risk. I think it only comes back high risk or low risk. I am 44 with no family history. In the beginning my MO did state 6 if I was tolerating it well, if not 4. I was doing pretty good up until this round. When I asked why 4 over 6 he told me (in my own words) 4 of TC was as good as 6 treatments of the other cocktails, so 6 might be better than 4. I am all for an aggressive approach if it will help and there are no long term side effects. I go back on the 17th for my 4th round we will see what he has to say. He said we may have to change my treatment ...maybe that is what he is thinking. It's scarey to go thru even one more round.
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my onco dx was 30 and I was pre menopause at 45 and they didn't say anything about doing 6 until midway, they said "there is an argument that if your tolerating it well 6 may be better" in the end they said 4 was enough especially since I wasn't tolerating it well. I agree with Annie that if there is no lymph node involvement and stage one, 6 seems like alot. Can I ask your age?
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Melody I was 43 at dx but turned 44 a month later. Premenopausal.
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It really is a personal choice, you seem pretty informed especially with a second opinion. I hope things go well for you at your next treatment, each one can bring different SE's. Hang in there
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I am 30 and node-negative too (but LVI and multifocal) and my onc never once suggested doing 6. I did tolerate the TC pretty well but am so glad I only needed 4... I also feel like I was on the brink of possibly irreversible side effects -- that's just my gut instict -- and if I did 2 more, it may have done more harm than good. Go with your gut (since it's all a crapshoot anyway!!)
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Indenial: I was 45 at dx and am 46 now, I also had LVI with bilateral bc and also node neg my MO has not mentioned 6 yet to me either. I am tolerating TC pretty well according to my MO, but do have some neuropathy that gets worse with each treatment. I have one more. I am concerned that two more after I finish my fourth could give me lasting neuropathy....just a gut feeling like indenial said..but there it is. It is all a crapshoot isnt it.....so frustrating really.
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Ultimately, if our MO is recommending six, we each have to make the decision we're most comfortable with and think we're less likely to regret later.
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I had six rounds of chemo and never questioned my onco on the number. I know that the number of rounds was determined by the pathology of my bc and other factors ( ie no nodes). In order for me to have qualified for the Herceptin clinical trial that I participate in, I had to have 6 rounds of chemo. Fortunately, I had minimal side effects and tolerated all of my rounds of chemo. As Annie Lane said, we are always in the driver's seat when it comes to determining what we want to do with our treatments; we just have to be comfortable with our individual decisions.
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Hello Ladies! I just wanted to update you that I had my last rad treatment today - WooooHoooo!! I feel like I have my life back! Now I'm just settling into my 5 years on Arimidex - so far, so good after 2 weeks on it. My hair is coming in and my son-in-law says I'm rockin' the Annie Lennox look.
I really have to update my avatar pic! I wish you all safe, effective treatments with minimal SEs. Hang in there and keep encouraging one another! -
ANNIELANE - Congratulations! You celebrate your little heart out. I just had my first rad today. 1 of 35 done. Can't wait to get on with my life too.
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CONGRATS ANNIELANE!!!!! So wonderful to hear that you have finished with the rads!!!
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Stopping back in so y'all can see my hair growth at 2 months post fourth & final chemo. Wouldn't you know that as my hair started coming in, my eyelashes started coming out, weeks after my last chemo?! I'd heard that happens often, so it didn't surprise me. I had permanent eyebrows and upper eyeliner done before chemo and when I go out I put on lower liner also to try to compensate for the lack of lashes.
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You look great, Annie!! Wow!
Carol
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I have read mixed things about weight gain / weight loss on chemo. What is your experience with TC? I start on 7/23 or 24 and would really prefer to avoid weight gain - insult to injury!
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I gained a few pounds but it was from the steroids and water retention. I lost those pounds after I had finished my chemo rounds. I ate 5-6 small meals everyday and tried to eat healthy. I also kept a food diary so I could keep track of what foods I ate and when. There were times that I didn't feel like eating but I still ate anyway. If you have favorite foods and you want them to stay your favorite, don't eat them while on chemo. I know some eat certain foods as a form of comfort. I tried to eat for nutritional purposes since one's body needs healthy foods to help keep the blood counts in the good range and to stay well throughout chemo.
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Annie--- Looking good!!!! Hopefully your body will get back into sync and the hair will grow at its normal growth pattern!!! Just so happy that you are done with active treatment.
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Annie you look awesome. I am 5 weeks PFC and am seeing alot of growth this past week. I can't wait to go "topless" outside. It's so hot wearing a hat all the time. My eyebrows on the other hand are very bare although my eyelashes are hanging on.
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Thanks Ladies!
Franky, by the time I finished chemo and had mostly recovered from my 4th and final treatment, I weighed about 5 lbs less than I did pre-chemo. When I felt like eating, I ate what I wanted and when I didn't feel like eating, I made sure I stayed hydrated and ate just a little bit of whatever I could stomach.
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Annie-again-Yep,you're an Annie,for sure,with that gorgeous head of hair. And a big congrats on finishing the leg of the journey with rads. I've noticed a week post radiation that the boob is a little more tender. Just a sensation,skin's okay. And I'm soooo glad to hear about no SE's with Armidex. I guess I'm taking my first dose this evening. I did take my raisins with gin though. I won't forget those!!
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You know my name is Gail, but my mom's name was Ann and my middle name is Ann. My dad always called my mom Annie. Her parents didn't give her a middle name, so as an adult, she chose the middle name Elaine for herself. Ann Elaine (AnnieLane) - My user name is in memory of my mom who died of Lou Gehrig's disease (ALS) three years ago. I miss her every day. Her diagnosis was truly grim from the beginning, but she handled it with such grace, faith and courage. She had no options like surgery, chemo, radiation or medication to improve her odds or extend her life. She is my hero and my role model and remembering her has helped me keep this whole BC experience in perspective.
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Oh Gail (AnnieLane) I am very sorry to hear about your mother. My husband is the exec director of the ALS chapter here in San Diego so we know first hand how that diagnosis plays out. It does take a rare strength and courage to face it.
I haven't posted in a long time but am happy to report that I finished my chemo, fourth round, yesterday. All in all, not as hard as I feared. Fatigue and stomach upset along with some heartburn. I was able to squeeze in my annual trip to New England before the fourth round to see family and friends and that was so good for the soul!
Wishing you all happy and healthy days! -
Congratulations Donnabelle!
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Yes, congratulations Donnabelle!! So glad you are done and hope the aftermath of your last treatment won't be too tough.
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Thanks Melrose and Annie for the weight gain/loss comments. Just received the creepy schedule from the cancer center for my 1st infusion on 7/23. 2 hrs for Taxotere, 1.5 hours for Cytoxan. Gotta start to get to the end so here's to taking the step towards the end!
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franky- Wishing you the best on your chemo. If you have any questions between now and then, please post them or if you want you can private message me. I'm 11 months since I had my final chemo last August 2012 and know that the chemo rounds are doable. Hang in there!!!!
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Ladies I have to share something that, once again, helped my perspective on our chemo regimen. I have a much younger friend who has a rare form of colon cancer. She's had surgery and told me, "Unfortunately, this form of cancer isn't very responsive to chemo." She has an eight year old daughter.
Chemo is no fun at all, but I'm glad I had that weapon in my arsenal.
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Congratulations Donnabelle! Your hair and energy will soon return- hooray!
Franky- good attitude! As Melrose says- if you have questions, ask away.
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Hi all!
I am happy to say that my last infusion was June 26th! Yay! My head is covered with peach fuzz, but I had black hair going in and I can't tell what color the fuzz actually is..seems like It may come back all gray! oh well.
I caught a nasty summer cold over the last week and it has moved to my lungs..yuck..nasty cough, no fever, but feel crummy..hopefully it will pass.I am sure my immune system is still trying to recover? Working hard to recover from this cold because my exchange surgery is scheduled for August 15th YIPPEE! Anxious to get back to my life.....
Gentle hugs to all going in..going thru and getting done!
I love you all!
XO
Runnermom56
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Runnermom19 - Hooray!!! So glad you are finished with chemo! Don't let that nasty cold get too bad without seeking medical attention though. I'm sure your immune system is still pretty suppressed.
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CONGRATULATIONS runnermom!
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Hi Ladies,
T/C knocked me into menopause after my 2nd treatment.. I was done the end of April last week my ovaries felt like they were going to explode! No period but I'm still having cramping. Went to my OBGYN and he said everything feels fine..... Anyone else experience this?
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Hi Ladies,
T/C knocked me into menopause after my 2nd treatment.. I was done the end of April. Last week my ovaries felt like they were going to explode! No period but I'm still having cramping. Went to my OBGYN and he said everything feels fine..... Anyone else experience this?
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I made it to a dermatologist on Wednesday and her educated guess is my hives and allergic reaction is from advil/Aleve. I am new to taking Aleve so I guess I can believe that. I also found out my father is allergic to Aleve. So only Tylenol for me. I am also on prescribed antihistamines for two weeks until I see derm again. A little concerned if tylenol will help with the bone pain I get from the shot. I have my fourth treatment tomorrow. I am much more nervous for this round because of this past round. Counting on the allergic reaction is truly from the Aleve and not the chemo. I am curious to her what my MO has to say tomorrow about all this.
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I had #5 last week. #4 felt worse. As far as those dog days. Now I'm just wiped out, starting some neuropathy, can't taste much, throat sensitive. But I don't have that awful bone ache.
My 9yo broke my blender cup. I felt a little guilty about the cluttered counter until she told me her FOOT knocked it off! She was climbing the counter to get something from the cabinet. I'm so irritated because I feel like I'm at the stage where, as a mom, I can't seem to have nice things. The cats, the kids...and not being able to keep up with it all. Yes, I've been good about lowering my expectations to get through treatment. But my stinking blender! I use it every day! I'll get hubs to order a replacement cup. -
Hi all, I haven't posted in a while but I still read my fav thread from the wonderful women who helped me thru this passage. I am 23 out of 33 rads (start the 8 boosts on Tuesday) and I still have lingering chemo SEs. The muscle pain seems to have gone. My nails are still a wreck but are growing in. My hair, well... It's coming back but not fast enough! Turns out I'm more vain than I thought! My eyebrows deserted me after chemo, sigh, I'm sure they will grow back. I have bouts of queasiness and chemo brain has turned into rad brain, tho not as bad. My energy level has increased as has my stamina. Not 100% but that will come in time, I'm told. I will start the hormone-blocker pills a couple of weeks after my last rad. It really is like climbing thru a tunnel. Congrats to all who are done with this stuff. Welcome and hugs to all who have recently begun. These threads have really been the most comforting, informative, reliable constant during this whole process and if not for the input and insight I find here I would have been dazed, confused and stressed beyond the tolerable. Thank you all!
Peace and minimal SEs to all.
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Love reading everyone's updates here no matter what part of treatment one is in!!! Yes, there will be that day when there is no more active treatments but time to be on a maintenance for life phase. You will each emerge from active treatment with knowing you have accomplished great things during treatment and handled the challenges as best you could. I'm only a few weeks from being one year post final chemo and it is hard to believe that I have come so far. Sending HUGS to each of you and have nothing but good thoughts and prayers for each of you!!!
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Btdemo, it's so good to hear from you. I agree with you that these threads, and this one in particular, have been invalueable.
Melrose, thank you for starting this thread for us and encourging us all along the way. For me chemo has been the hardest part of this journey so far and I've now finished rads and 3&1/2 weeks on Arimidex. Thank you for being here for us.
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Hi AnnieLane, congrats on fininshing rads! And your hair looks fab! Have you had any SEs from the Arimidex?
Melrose, you are the best, thank you. You are almost a year out? That is cause for celebration. Peace and prayers to you.
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I haven't noticed any SE's from Arimidex. At first I thought I was having a few random joint pains from it and then realized they were nothing new. And having been slammed into chemopause anyway, I try to remember that even without Arimidex, menopause wasn't going to be a walk in the park. I'm taking Vitamin D3 and Glucosamine Sulfate with hopes of keeping the joint pain at bay. Also a common theme on the Arimidex threads seems to be that for a lot of gals, excercise helps trememdously at keeping the SEs to a minimum. As I recall, you're pretty active anyway, BT, so that should help you regardless of which med you take. And if you take Tamoxifen, I'm sure Melrose will have some good advice to share.
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Yes thanks so much Melrose for always being there to answer questions. I got kicked loose from the RO, BS and am sure next week the MO will cut down my visits. Feeling a little strange about being done, happy but strange. Btdemo what do you mean by rads brain? I found I was doing much better with the chemo brain phase and then 3 weeks into rads felt foggy again searching for the right words and what I was supposed to be doing next, just wondering if anyone else felt that way.
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I'm pretty sure I'd feel on top of the world if I didn't have this pain in my hands. A couple of joints are already "clicking". I've seen that the Glucosamine Sulfate might help,thanks for the advice. I don't want to take too much Ibuprofen. I've never taken pills all my life. This new regime with hormonal therapy is still a little hard for me to feel comfortable with. I'm wishing all of you CT girls the best on your journey!
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AnnieLane, glad to hear you are tolerating the Arimidex well. I went into menopause at age 40, early I know. So I will be taking the post-menopause Femara. SEs are hot flashes...nothing new for me there. I will have to watch bone strength tho. There was a post a few days ago about Livestrong program at YMCA for cancer survivors. It's free and is a 12 week session. They said they have about 80 percent women in the program. There is one pretty close to me so I think I'll sign up. The next one is Sept thru Nov. Maybe I'll get some strength/stamina back.
Melody46: I mentioned to my RO that I still had some chemo brain going on after a week or two of rads, and he said it also happens with rads. I too am a little aprehensive about finishing clinic treatment. The transitions seem to leave me a little weepy. I guess we're entitled to a little "down" time.
On another note, my family-medical-person (it seems all families have a person who is the go-to person for medical issues. Well my sis-in-law is mine and she has been excellent: supportive, comforting to me and my daughter, came with me to all my Dr appts and chemo sessions and retains information that I seem to forget. Well, her mother is now in the hospital and has been for 3 weeks. They can't seem to figure out was is going on and she is not getting better. So, hopefully I can get done with rads and get some of my old self back and give her some support and TLC. Whew, sometimes life isn't easy for anyone.
peace to all
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would it be weird to meet up once a month or once a year via email or facebook? Or meet back on this thread, tho I don't know how these threads work so I'm not sure it would still be open in a year. I have come to rely on you wonderful ladies and would hate to lose touch. It's difficult to talk about some of these details with anyone who hasn't been through it. Heck if we all lived within driving distance of one another it would be fun to get together, but there are gals from CA to TX to Canada to FL with the northwest and east represented as well, and me here in Nebraska so I'm guessing digital meet-up would be more practical
your thoughts?
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Lolalou-
Feel the same-just want to get this behind us. I think going ahead with chemo is a good idea. You have to give it your all, even though it will suck for awhile. I did #1 TC yesterday. Just tired today. Keep saying, "one down, three to go."
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Ladies--- You can form a private closed facebook group that entry into that group is by invitation only. This way you can control can be in the group and maintain some privacy. Just pick a name for your group. Let someone be the administrator. Whoever would like to be in the fb group would send a bco private message providing her email address. The administrator would then send out a message to the person requesting to be in the group that she has been invited. How do I know all of this.... I happen to be the member of two private facebook groups with gals that I met on these threads.
To those gals just starting your chemo..... Wishing each of you the best and an easy time with the chemo. If you have questions/comments, continue to post here. One of us who has already completed chemo will be around to check on this thread and to help you. HUGS!!!
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I am starting taxotere and cytoxin in two weeks. i am opting not to get a port for the four treatments. i've been reading about all of the side effects of cytoxin, which really scared me. i will try the claritan for the wbc shot. do they give you anything for pain?
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Changlyn: I recently finished cytoxin with 5FU and epirubicin. I had very few side effects other than fatigue and low blood counts. Really no pain and no nausea. They gave me pre-meds for nausea (aloxi and one other along with steroids.) I am now getting taxotere with herceptin..... a bit of bone and muscle pain days 3-6 but used valium to help me get comfortable at night. My advice would be to have something you know works for you ready for when you need it. I played phone tag with Dr and pharmacy one day while hurting. Good luck. -- you'll do fine.
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Changlyn- I definitely understand how you might be apprehensive about the chemo after reading the list of side effects. Just remember that everyone reacts differently to the same chemo regimen and one doesn't necessarily experience every side effect that is listed. Just knowing how to manage the side effects will help you feel a little less frightened. Please try to remember that if you start experiencing side effects and they seem to be escalating, do not hesistate to call your onco to get some help. It is the onco's job to help you get through treatment. Don't be afraid to call thinking it's the weekend or it's in the evening; there should be an onco on call to help you 24/7. As for pain management, do ask your onco what OTC pain meds you can take such as Tylenol, Motrin, Advil. If the pain is severe, do ask for for prescription pain meds. Glad you know about the regular 24 hour Claritin to help prevent the bone pain from the Neulasta shot. Just remember that you can still experience muscle aches and joint pain from the chemo itself.
Wishing you the best. If you have any questions, always ask.
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Awesome, thanks Melrose.
4 more rad boosts... then Femara. Fatigue hit last week, but it took a few days to figure out it was the rads. A little sore but pretty ok.
Welcome chemo sisters. Hopefully you will have few side effects. There is great info on these threads to help you thru. Hydrate, hydrate, hydrate. Be kind to yourselves, rest when you can.
Peacefull energy to all.
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Hi ladies
As you can see from my signature. I am on TC x 4. Due for #2 on Friday
I am concerned from your discussions of 0 node involvement. Considering i had 1 (still encapsulated ) node ... I did have great margins and they have said no rads needed. Does having ILC
Maybe make a difference ??
Why am I not on either x6 treatments ( not that I want an extra 2 ) or an alternative regime like AC-T
My onc is extremely experienced (3000 women) and top in her filed in Western Australia. So I trust her judgemt but your comments on this thread do make me ?? ?? Her choice
#1. TC was a breeze for me. Carried on working and playing golf. So am interested to see if #2 knocks me around a bit more ??
NC x -
Hi Nocompromises!
I had 4 TC and jsut finished on June 26th. I found that ...
2 and 3 were the hardest as far as SE , for me. I assume you are getting a Nuelasta shot the following day? Those shots, for me, were what caused the bone pain and they hurt me! I used the narcotic pain meds the MO rx'd and my advice to you is DO NOT settle for pain when the MO can give you meds that will help you!
I never got nauseated but did get some loose bowels from the 2nd tha 3rd...never was constipated. Just fatigued and pain in my bones which eased up about a week after each treatment. Hairloss at about day 13 after 1st treatment.
I am now done with TC and just started the Arimedix and I have to say that the bone pain is already a concern of mine as far as SE from that little pill. My arms and wrists hurt..but I try to ignore it and go on about my life because I am grateful the hard part is over...I hope the same for you...hope you get thru this with flying colors and min SEs. Know that I am thinking about you and sending gentle hus your way!
runnermom
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Hi runnermom
Thnx for your quick response
I didn't have neulasta with first cycle. Neutrophils dropped to 0.1 at day 10. Have new blood test day b4 round 2 was hoping to escape those neulasta jabs but we will see
I reckon I got away very lightly for round 1 and am under no illusions that 2,3 and 4 could be much harder. Time will tell. Bring it on and roll on Friday sept 13th ( my last treatment )
What made you go for the PMx ? I am undecided at present whether to reconstruct at all, do the right one. Or do right one and have PMx on the left to make them match but don't want to loose intimate sensations ...
How did you find the TEs? Painful or ok ??
NC x -
Thanks to everyone who posted on this thread, it's very educational - I read thru pages & pages of it bec. I got my chemo marching orders from my oncologist. Taxoter & cytoxan every 3 weeks for 4x, starting in about a month (I just had a lumpectomy). Doing research now so I'm prepared!
Maybe I'm weird (ok, I know I'm weird ;-), but I'm not super worried. Costuming is my big hobby, so I love wearing wigs & am excited to buy a bunch of new ones. I've never liked my big bushy eyebrows, so cool, I'll save money by not getting them waxed, they'll just fall out & I can draw them in how I want them to look. I can even wear fabulous false eyelashes like a drag queen if my long real ones falling out bugs me.
Other side effects all sound like things I've had already -- nerupathy? been there, done that with one of my migraine meds. It went away after a few months. Same with chemo brain (same migraine med), & ok, it hasn't entirely go away, there's the "can't remember a word that's on the tip of your tongue" side effect totally common to this med. Naseau, fatigue, pain, all seem managable with meds, diet, lifestyle adjustments, & support. I'm premenopausal but happily childfree, so fertility issues aren't a problem. Also my mom swears that menopause ended her migraines so I've been looking forward to the big change.
I'm sure there are times that will suck (parts of the past week recovering from surgery have sucked!). But I'm feeling prepared. I have a loving & generous support network, including my husband, mom, in-laws, & lots of friends both nearby & online. And now I've found this group, which has already been great over in the lumpectomy lounge. It's awesome to connect with ppl going thru the same thing who really know what you're talking about.
I'll prob. have lots of questions as my start date approaches. Thanks in advance!
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Batcatlady...great attitude. I am finishing up chemo. My ten cent advise is be prepared for side effects and speak up when u have them because there is usually something to make them manageable, know a few days may be a downers and most importantly give yourself some down time and treat yourself. I love looking through gardening and craft magazines so I purchased quite a few for my " relaxing" days. There is usually a thread for the month you start chemo to join. Very helpful as you are all going through it at the same time.l if not you can start it.
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Just thot of an early question for all those who've been thru or started CT (or is it TC? I still haven't picked up the lingo here). About when did you start losing your hair? From what I'm reading, it seems like somewhere after the first treatment, maybe day 12-15, right?
I have an out-of-town event I had planned to go to that would fall right before treatment #2 of 4, so I'm wondering if I'll be shedding hair all over the place (at least I already have wigs & hats in my crazy wardrobe). Yeah, you can't schedule side effects, but I'm trying hard to not let cancer take over my life any more than it already has. Gotta keep doing the stuff I love.
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Nocompromises.. I hope you don't have to get nuelasta..but in my case even with it I developed a kidney infection just after my first round, I recovered with antibs in a few days but was pretty ill for a time there..don't know what it would have been like w/o nuelasta? Who knows? (that was also when my boss of 5 years decided we were no longer a good fit, I was their Nanny, becasue I was too sick to work..uhg) That's another story,,oh well
Regarding why I chose a Bi lat DX ..I didn't want to worry if the cancer would come back in the healthy breast plus I wanted them even..just my personal choice. Re: tissue expanders..OUCH OUCH AND OUCH(does that answer your question..LOL) I finally get them out on August 15th! YAY! gotta get these turtle shells out from under my pecs!
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batcatlady
I had an event to go to just about when I thought my hair was supposed to fall out(it actually fell out the last day of my trip) but I shaved my head just before I left for the outting and wore a wig or a scarf while out of town..the little nubbies from my shave down started falling out in the hotel bathroom sink the last day and I wasn't so shocked bc I had already shaved down and it was my choice when to lose my hair..that was my experience...
xo RM
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Runnermom.
I don't like ouch, ouch and ouch. Great news re aug 15th
Batcatlady. I had TC #1 July 11th
Hair needed buzzing to #4 day 16 and today is day 20 and it was looking soooo mangey that I went to #0 total shave
Hope yours can last. I would shave and use your wigs.) -
Here is the short version of my hair story.....
I had waist length hair at diagnosis Feb. 2012; cut the hair to a short bob March 2012 right before my UMX and in early May 2012... almost three weeks after my first round of chemo, I cut it to short short boy cut. I never cut my hair after that. When I say I cut it, I did cut a majority of the boy cut myself.... I made little ponytails and snipped those off myself and had my husband clean me up with his trusty electric clippers with a 1 inch blade guard. No one was home when I did the self hair cut but it was very liberating. I did not make any elaborate plans to shave my head or for this final cutting... I had gotten so very annoyed that my hair was just falling out everywhere... on me, my clothes , my pillow and just tired of constantly using a lint roller to get that hair off of me. I did not shave my head or buzz my head because I wanted to see if all of my hair would actually fall out. I had a very thin veil of hair left at the end of my 6 rounds of chemo. Throughout my time in chemoland, I rubbed my head which was very comforting and it was reassuring to feel what little hair I had on my head.
I had a free wig through the American Cancer Society's Look Good Feel Good program but I never wore it. I opted to wear hats, bandanas, Buff's and knitted caps or just nothing because of the summer heat.
You will figure out what best for you. Again, there are no written rules on what to do with the hair, you just want to be feel good and comfortable with yourself. Always try to remember that you are beautiful, no matter what.
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I have ILC Grade IIA. No node involvement. I am in the Chicago area and am not sure if things are different in your area. I am doing TC x4 with 6 weeks of radiation. I have been told ILC is "tricky" as it does not usually develop as a lump-it tends to branch out.
Why is you doctor not wanting to do radiation?
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Biker girl
I think because I had very clear margins ( 30mm, 60mm and 10mm ). and the one node was still encapsulated. I should probably follow it up more. But you had a lumpectomy whereas I had full Mx and all lymph nodes out so nothing left to irradiate ??? IDK I need to ask more I think. -
When I knew I had to do chemo I cut my hair (mid back) to my jaw line in a cute bob. Then about two weeks after the first treatment it was coming out so badly I chose to shave it down to a 1" pixie. Of course it continued to fall out but that was it for me. Its pretty traumatic to lose your hair and I had a very hard time with it. Today I'm 14 weeks out from my last CT - 4 treatments and I have about 1/2 of hair covering my head. I started using Nioxin on my scalp after my second treatment and it did a great job of cleaning out the follicles; little pieces of sand is what it felt like
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6th and final round of TC today! I'm bloated and the steroids are giving my very fatigued body a boost! I fly out tomorrow after my Neulasta shot. I'm getting scans at MDA Houston. Here's hoping the chemo worked well! Surgery is next (another MX will remove the recon and spared skin---will be flat on IBC side for a while). Then 4+ weeks of twice per day rads, starting 6 weeks after surgery. Both will be out of town in Houston.
I can't believe it was my last infusion! I told my dear nurses if they see me AGAIN I will really be cranky!! And my blessing was that I only got stuck once for my IV (no port for this course). And no tears! This is a good day. -
Yippee Paula!!!! All done with chemo!!!!! Congrats!!!!
As I told you before, if you need some directions or need info while you are in Houston, you can message me. Happy to help you....
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Congratulations Paula
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BTdemo-I was in the May 2013 surgeries board and became very close to the 14 ladies in there (nothing like going through hell together!)..we have since went to Facebook as Melrose was talking about and have our own group. You can't see our post in any timeline and we can "like" something without it going there as well. We are planning to meet somewhere warm and tropical this coming May to celebrate the year. I honestly do not know what I would have done without the support and trading info..laughing and crying together.
I just had my first chemo treatment last Thurs. I am very glad to see this board, as the other chemo boards have people with all kinds of chemo regimens..and I start getting scared reading about really bad SE's on one..and realize they are taking a lot stronger than I ..so I love this board for CT
I went through mine ok. Worst part to me was the 1st and most of the 2nd day..the nausea meds/steroid mix..was awful to me..brain wasn't clear and jacked up..but exhausted at same time..after that fatigue from chemo on 3rd day was walk in the park. I have a question-has anyone experienced kidney pain? My 3rd and 4th day, I had kidney cramps for about 15 min at a time..hurt!..but then would be 3-4 hours before it happened again. It went away by Sunday. My onc nurse said she has never heard of that with our drugs..they are doing test. It worries me about the next 3 times.
OH HAPPY DAY!!! Congratulations Paula!!
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ckmoss: thanks for the info. And yes, I had kidney pain a couple of times within 4 to 6 days after my first chemo (just finished rads today!! yay) and discovered it was because I had 2 busy days and did not drink enough water. After that I made sure I drank at least 60 oz of water every day...even through rads. Did not have kidney/back pain after that. I also had a rash after the first chemo. Again within the first 4 to 6 days. So water, water, hydrate, hydrate. On a side note, I did mention this to my onc and I think he may had adjusted the chemo cocktail a little bit.
peaceful vibes to all
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I am on 4xTC regimen and on Day 11 following my 1st infusion. I have to say I feel so lucky every morning when I wake up still feeling great. My energy level is normal, I am walking 1.5-3 miles every night, I have very minimal SEs (occasional loose stool but I have that in my day to day life normally!). I have noticed that my sense of smell is heightened and, I must say, smelling the extra 10-20 odors that I didn't used to smell is NOT added value. Most ordors are not pleasant so I will be happy to go back to normal on that front! My hair is all still in and feels really strongly tied to my scalp. I am having trouble wrapping my mind around the bizzare idea that in a couple of days it is all just going to let go and fall out of my head.
I read all of your advice and went to a naturopath cancer specialist so I am taking some supplements that might be helping combat the SEs:
-Magnesium to replenish what TC takes from you
-L-Glutamine powder (2 tsp / 3 x day) to avoid neuropathy
-Claratin 24 for the Neulasta shot
-Ginger capsules
Hoping I can stay feeling this healthy and this lucky throughout the next couple of months!! Maybe I will be this total anomaly and keep all my hair through treatment.....we'll see!!
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franky-- Wow on the hair. I noticed a little shedding about 14 days after my first chemo. Everyday, thre seems to be a little more shedding which was noticeable in the shower drain. A few days before my second round of chemo, I became aggravated with the continual shedding that I took matters into my own hands and made some little pony tails out of short bob and snipped those little pony tails off. At that point, I had a short short boy hair cut and never shaved or buzzed my head. Slowly but surely, the hair came out after the second round of chemo. I was never totally bald but had a very thin veil of sparse hair on my head. Maybe you will be one of the few who doesn't have any hair loss from the chemo. Wishing you the best!!!!
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Well done Franky. You sound like you are coping similarly to me
I managed 4 rounds of golf thru round 1 TC. Hopefully round 2 is as good for us all. I am I. Day 2 round 2. Will let u know how I go
Good luck with the hair
I got fed up with stubble and but the bullet and it feels more comfortable now. NC x -
Franky-You are 2 days ahead of me, so we are very close. After my 5th day..I was pretty much good to go. I got my hair buzzed 6 days after my chemo. I just can't take the clumps coming out psychologically or the hair all over the place (Funny , we picked a puppy that wouldn't grow up and shed much and now having to worry about me! LOL.) only to end up shaving anyway..Its not that bad. I wear a wig to work, but must confess am not out of the parking lot before its off my head. Of course, Im sure this will be different story when I'm completely bald. Never thought as myself as real girly or foo foo..but damn! have I missed my breast and hair!
The only side effect that has kept lingering is my tongue is sore. Theres no bad spots in there..just feels like its constant burning. Ive been using biotene and that seems to be helping. I am icing my mouth next time. My onc RN said she had seen people do that and they still had mouth issues, but its worth a shot! I am going to get those supplements you mentioned! Ive been doing fresh ginger in different dishes..but def want the other ones.
I hope ya'll continue to have no SE's and its great that you can get out and be active still. Ive been working extra hours at work this week and will next week..trying to save back money for these bills that are poring in.
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Woo Hoo Congratulations to you, Paula (: !! I am having number 3 of 6 infusions tomorrow, so I will be over the hump and starting down.
The infusion itself was uneventful-I thanked my surgeon all day for my port (:SE from first treatment was a bit brutal-- bone pain and the feet hurt so bad I hated to even let them touch the floor- I had bad headaches for three days and could not sleep the first two days following - BUT no nausea-I had to go back a week later for WBC check. it was very low so got the N shot- at that time they asked about the SE-they said the anti nausea meds were what gave me the headache- When I went for treatment #2 they changed the anti nausea meds, and I had no heacaches that time--treatment #2 was was less brutal, but seemed to last longer- I am not sure if that is b/c the N shot was given to me the day following treatment instead of a week later like with treatment#1?? I didn't experince the bone or foot pain- just a general feeling of tiredness and of not feeling well.. with both treatments I have a horrble taste of rubbing alcohol when I try to eat or drink anything- chocolate milk sees to be the only thing so far that tastes as it should-
I eat ice chips on the way to the treatment and all during it as well.. I have had no mouth sores so far, knock wood-I don't know if the ice chips help or not but I will continue to do them.
My hair started to fall out day 10- took about a week.. I guess -
Good luck to each and every one of you as your battle continues..
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Chemo treatment #2 on 8/14-wondering if side effects will be the same or worse. Little nervous. Hair is beginning to fall out. First treatment just left me a little tired, constipated, but by day 6 felt normal again.
Ladies-did your side effects get worse with each treatment? I have been off work for 3 weeks to see how I would do with first treatment, but think I should go back part-time. What do you ladies think? Would just be working at a desk with no direct patient contact (I am a nurse).
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Hi Biker girl
I had #2. Aug 2nd was pretty similar to round 1. Day 4 was worst for me couldn't work that day but did normal days 9-4 on day 6 and 7 and played 18 holes of Golf day 8. Today is day 10 and am doing 8.30-5.30 hours ( pharmacist) - hope that helps you but we r all different roll on #3
Sorry to hear u missed sturges:(
Worst SE seems to be itchy scalp -
Hi Bikergirl,
Mine didn't exactly get worse with each treatment but each round was a little different. #1 was easiest, #2 & 3 were hardest because of one-time side effects, #4 wiped me out most (energy-wise) but wasn't overall as bad/painful/etc.
I would have had a hard time working for the first week or so after each treatment (especially because I had a lot of mental fogginess each time). Could have worked during the next 2 weeks before the next round though. (I am a stay-at-home mom and was able to take care of my son every day but arranged playdates for the first few days after each round to ease the burden on myself, but we resumed most normal activities by the second week, just at a slower pace/more time to rest.)
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Thank you Nocompromises and indenial for the feedback. Hope everyone has a good week.
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Bikegirl...My rounds were a little different each time but I have been working part time through it. I received chemo in Wednedays. Week of chemo I take off Tuesday-Friday. The next week I work 5 hours a day and the third week I work eight hours. I am also at a desk. I am in a position if I have to leave I can and it will not directly effect much. For me it was good to work some to help me focus on something else besides the cancer and treatment. I am tired at the end of the day and go to bed earlier than I typically did. Plus I do not have kids to care for and my husband does most of the cooking.
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bikegirl--Ive only had the 1 and will be doing my 2nd one on the 15th. I've worked full time through it..Im at a desk. Ive had to take of day 11-12 ..it honestly felt like it was day 3 all over again. And Ive had to take today off..exhausted ..however, I went for blood test today and levels were fine. I had a lot this weekend..around 10 hours sleep in 36 hours..major stress (BFF in scooter vs city trash truck wreck..took her leg, concussion..but is doing a bit better)..and my oncologist said that although I may feel like Im better...it takes you longer to "catch up" sleep, etc..when you in going through this. I guess..because I have slept 8 good hours the past two nights..but sure doesn't feel like it. I hope yours goes easy you 2nd time
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Hey fellow Chemo ladies-
Had treatment #2 yesterday. A little tired, but meds they give me to take at night helped me sleep. Onc doctor is releasing me to work part-time next week with no patient contact/just desk work. I am happy about that. Going to have my friend buzz my head as the hair is really coming out.
For anyone having constipation problems, try the Senokot S-I also eat prunes, whole grains, raisin bran cereal as well as drink lots of fluids. So far, no constipation this time around.
I hope you girls all have a wonderful week!!! Thank you for all your responses.
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ckmoss-
Good luck with your treatment today. I hope you friend recovers well. ((hugs))
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Just checking back in. My hair did finally fall out. It stayed in until Day 14 after the 1st infusion. It came out little by little on days 14, 15, 16, 17 - just thinning but not patchy. On day 18, it really started coming out I was picking it off my clothes all day - pretty gross but still possible to pull off without a scarf / head cover. In the shower the morning of day 19, I went from thinning hair to a 90 year old woman in the nursing home look. We went to the salon and said shave it all off that day. I thought it might throw me but it really didn't. It was nice to not be covered in hair as I was in the past 2 days.
I had my 2nd infusion 2 days ago and still feel great. I have been working in the office full time the whole chemo period thus far. No real side effects except the hair loss and trouble sleeping the nights I am taking steriods. Feeling really lucky! Just wanted to let everyone know it's not so bad for some of us. Sorry for those of you having a harder time than I am.
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Is this what they call the Stephen Jones regimen? My onc is recommending that and I am looking for the right forum.
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Hello everyone,
Ok , I did my research, and it is indeed the Jones regimen,so I will be starting that chemo very soon.
I read about possible side effects, and I found that " TC was associated with more low-grade myalgia, arthalgia, edema and febrile neutropenia".
My concern is the edema. I am at risk for lymphedema, after an axillary nodes dissection, is there a connection?
Thanks for any info.
Colette -
Colette64- I did a quick search on the internet about the "Stephen Jones" regimen. I did find that he is breast cancer doctor connected with Baylor college of Medicine in Dallas Texas and has presented some data on a clinical trial about various chemo regimens for metastic bc at the 2003 San Antonio Breast Cancer Symposium. I'm not sure exactly what kind of information you are searching for.
The chemo regimen on this discussion thread is the chemo regimen where two drugs, Cytoxan and Taxotere are adminstered every three weeks for at least 4 rounds. Some gals here like myself received 6 rounds. If this is the chemo regimen that you will be having, this is just one of the chemo threads you may be interested in. You may also join a chemo thread for the month that you start having chemo so you can get through the chemoland with other people. If you have questions, please post them. Wishing you the best.
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Thanks melrosemelrose,
Yes it is the right treatment, 4 rounds every 3 weeks of Docetaxel/Cyclophosphamide, commercial names are taxotere and cytoxin.
So it seems I am into right forum :-)
Is it as bad as they say? -
Colette-- Anyone who has made a ALD or a SND is at risk for developing lympehdema. That means one needs to be mindful of that fact and may want to take precautions. The Lymphedema Forum here has a wealth of information and some very knowledgeable women who frequest that forum. Here is the link to the Step Up Speak Out lymphdema website which has a great deal of information about lymphedema: http://www.stepup-speakout.org/ . If you are concerned that you are possibly developing lymphedema, you may want to get a referral for physical therapy from your breast surgeon. It would be good to have a referral to a physical therapist that is knowledgeable about LE and breast cancer patients.
Fluid retention is a side effect this chemo regimen because of the chemo itself and maybe from the Decadron (steroid) if you receive that drug to help prevent nausea. I don't know if the fluid retention and the lymphedema are connected. If you have experiencing edema, you will know it--- one because you will be weighed every 3 weeks before receiving the round of chemo and second, you would see it yourself ( ie) ankles, fingers, etc. It is a good idea to note your side effects on a calendar and also to call your onco if you have questions about your side effects. If you need help, always call your onco no matter what time of day it is or if it is the weekend. It is your onco's job to help you get through your time in chemoland and there should be an on call onco available 24/7.
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Colette-- I don't know what stories you have heard about this chemo regimen. Everyone's body handles the chemo differently so I can't say if it is bad for all of us. I had what I would call minimal side effects. Yes, I lost my hair, had a sore mouth/tongue a few times, my taste buds went on vacation for 10 days after having a chemo round, and had the usual tired and fatigued feeling. I did have on occasion light bouts of constipation and diarrhea but nothing that was not manageable. I didn't experience any heartburn but I did burp a lot (... like burp like a drunken sailor and the kind of burps that you would tell a teenager not to do!!) I'm glad you are asking questions and wanting to read up before you start your chemo. Knowing about how to manage your symptoms is important so you are aware and you don't panic when you do have a side effect.
You may want to get these two cookbooks which I found very helpful ....
Eating Well Through Cancer by Holly Clegg and Gerald Miletello, MD ( had shopping lists, menus, helpful tips on handling side effects)
The Cancer Fighting Kitchen by Rebecca Katz (great recipes and pictures and other tips about what to eat.)
You can go on Amazon to check them out since a local bookstore may not have those books in stock.
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Colette, Everybody is different, looking back on it it was doable, I didn't have as bad a time as some with side effects yet some things were more difficult for me like fatigue. You will get through it and these message boards are wonderful for support.
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I know that we are all different and that each of our experiences wlll be different..I am just coming down from #3, and now "over the hump" (: Yippeee- #3 has by far been the worst, but I know too, it could have been a whole lot worse so I feel blessed. I'm just curious about what #4 might have in store-
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Hello ladies!
I am so thankful for your replies. I am trying to get mentally and physically ready for the chemo, after having fought hard with two oncologists to convince them I do not need any chemo. They ended up convincing me, so I am going for it.
My last onc recommended I do the cytoxin/taxotere treatment instead of the more conventional ACT, and I liked that onc.
He is reachable via email all the time, so I can ask him many questions, but I am trying not to overuse it, and the women in the forum have actually experienced the stuff, so you gals are a better source of info.
Regarding the edema, onc said it happens mostly in the legs, and rare. I am already followed by a PT, and so far no lymphedema, just nasty cording.
We'll see, hopefully my bad luck is all tapped out by now, and everything is going to be all right.
Thanks again for the support ! -
Collette
I am on day 15 after round 2. So far so good. Ditto melroses Minor SEs as above ( minus the burping and definately no swelling or oedema
My 2 major probs were a raging toothache after rnd 1 and currently cellulitis at Mx site in round 2 both issues dealt with with a course of ABs
TC is definitely doable. -
I am on Day #3 after #2 round. Felt energetic yesterday (probably SE of the steroids) but did not push it too much. Today, fatigued, did not walk today. Took a long nap this afternoon, so I feel a little better. No constipation with this round so far. Keep up on your liquids and your whole grains and fruits, girls. Got som errands done today. Hope to go back to part-time work next Wednesday.
Hope everyone has a nice weekend
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