Starting Chemo April 2009
Comments
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txgal....thanks for reminding me! i read on one post that someone felt like being kicked in the tummy every time she had taxol and somehow that just stayed in my mind. but you are so right. i didn't get any bone pain with neulasta....so everyone is different. hopefully taxol won't have that much of an effect on me either!
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Thanks for the suggestions. A good friend just walked in with the ingredients for Magic Mouthwash. There's a prescription version, but she just got the children's Tylenol instead of codine. I hope this stuff works!
In the meanwhile, my brother called earlier, and said that my mother officially has MRSA, and has been isolated. (She's very near death). I can't even go see her now.
When it rains, it pours....
I appreciate the loving support I find here!
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luckofthedraw-
I am so sorry that everything is hitting you all at once. It just doesn't seem fair. As if what you are going through with your own body isn't enough. It's impossible to understand why things have to happen the way they do.I too am suffering terribly with the mouth blisters - mostly under the tongue, and my entire tongue is swollen. They seem to arrive the week after tx and stick around until the next one. My regular 6 month cleaning came up a couple of days ago, and my dentist gave me a script for nystatin, which is what they give babies with thrush - directed to swish and swallow four times daily, but I must admit, it really hasn't helped. What has helped, however, is completely coating my tongue above and below with liquid Anbesol. It numbs it completely. I don't know if it's good that it is masking the pain at this point, but it is the only thing that has given me any relief. I dip a Q-tip in and start painting! I hope that works for you. (I don't want my next tx to be postponed because of this - it's scheduled for Monday the 1st).
While we are asking for help, here's a question: since my last A/C tx (May 18th) I have been menstruating constantly - to the tune of 11 days now - not heavy, but definitely there. Has anyone else experienced this? I thought A/C was supposed to put you into premature menopause??!! Tammy
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Hi Everyone,
I haven't been online for at least a week. Spent 5 days in the hospital getting IV antibiotics for diverticulitis. My oncologist thinks that it may have been caused by the taxotere. Not sure if she is going to lower the dose or cut it out of my cocktail of TAC all together. My 3rd chemo treatment out of 6 was 5/14, and was hoping it would be alot smoother than the 2nd since I got shingles after the 2nd dose. After the 3rd dose I felt extremely tired and experienced minimal bone pain, since prior treatments included SE of severe bone pain. Thought I was out of the woods and sailed through 3rd without too many SE until a week and two days after my treatment when I felt constipated and gassy (is that a word? lol). I didn't think much of it and just took senna and colase for the constipation. The next day I felt as if I was being stabbed in the left lower abdomin and went to the ER. IV Cipro and Flagyl for 5 days. Still on Cipro and Flagyl by mouth at home. Next chemo due 6/4. I hope this doesn't postpone my treatment, won't know until Thursday when I see the oncologist again. The SE have been hell, but having this site has made all the difference. When I feel like I'm going through this and no one close to me understands how hard it is, I read what everyone else is going through and the suggestions from everyone really help to feel that I'm not going through this alone.
To my Maryland friends: Have you heard of the Hopewell House? It's a cancer support center off of Falls Rd. My chemo nurse gave me inform. and I went to an introduction session before I ended up in the hospital and was planning on going to a yoga and meditation class there. They also have breast cancer support groups. All the groups and activities are free of charge. www.hopewellcancersupport.org
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Tammy,
After my second TC treatment I menstruated for 14 days. It wasn't as heavy as a normal cycle, but it wasn't spotting either.
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Does anyone have problems with RBC count? Mine is dipping low and the doc prescribed Procrit. But with recent box warnings on how Procrit can increase mets and recurrence, I'm hesitant. Anyone else with the same problem?
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Hi Paula,
I hope your feeling better - I also had a 3 day stay in the hospital after my last chemo (2 weeks out of infusion, and also thought I was home free!). My chemo is different than yours, and I had a viral pneumonia that sent me to the hospital with 104 fever - been home 10 days and doing ok - my next treatment was delayed a week, just to let the antibiotics do their job, and I am hoping that this round will be easier. When you think of the cocktails of drugs we need to beat this, it's no wonder things don't always go so smoothly - as long as you have confidence in your onc, just hang in there, get your strength back, and then battle on!
((((HUGS)))
Geri
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Thanks florbo,
I was starting to think it was never going to stop! It makes me feel better to know that I am not the only one who experienced this. There is such a sense of peace that comes from going through this with others. It lessens the emotional load a whole lot. On to my last A/C tomorrow - hurray - halfway through.....
Tammy
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tulipbebe -- I started out a little anemic and my hemoglobin/hematocrit dropped a little more right after starting chemo and has stayed there. My doc says he's backed off the epo based on some reports that it may be a tumor growth factor. He prefers to watch the red counts and if it becomes a serious issue, there are other options like red cell transfusions. Since the red cells last about 3 months, one transfusion may be enough to get someone though the rest of chemo. I'm also trying a liquid iron supplement called Floradix (can find at Whole Foods), which was recommended by the staff nutritionist. Also trying to eat more iron-rich foods, but my stomach had been really upset lately and I've had to back off a little. If you have plant (non-heme) foods, always add a little vitmain c to the meal for better absorption, or a little meat. And avoid caffeine within a few hours of your meal. Beans are a pretty good plant source, fyi.
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To Tammy -- after my second TCH I've been bleeding a little for 5 days and counting. The first day freaked me out because it was a rush of brilliant red blood, but since then it's been slow and erratic. Would like it to stop though, I can't really spare the red cells...
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Hi dbOak,
Thanks for your tip. Will definitely look out for Floradix at Whole Foods. I'm in a very bad cycle.....in that right after the chemo, my appetite goes way down and I almost puke if I see/smell food. And then one week after that, things improve but now my whole mouth/throat is sore and blistered so even if I wanted to eat, it's a very painful process.
I will ask my Onc about blood transfusion. I already had one shot of Procrit but is due for another one tomorrow, which I don't intend to have.
Have a good and restful night.
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Tammy,
I bled for a a lot longer this month too. It was my 4th AC and I think I had heavy bleeding (from my period) for signifcantly longer than usual. I, too, thought the AC would put me into menopause, but it hasn't happened yet. It's helpful to know I'm not the only one!
Pam
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Tonight is the Look Good, Feel Better program over at the cancer center. My (step) daughter is going with me. I am really excited. I can use a night out for fun!
My 3rd tx was on Thurs. Halfway through. So far so good. A little abdominal discomfort and fatigue but not much of either. And the hot flashes seem to be taking a break the last few nights. It is good to catch up on some sleep.
So I will post tomorrow and tell you all about the beautiful new me. Now I am the 'before,' tomorrow I will be the 'after!'
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Amy,
How was Look Good Feel Better last night? You looked beautiful before, you must be stunning now!!
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Look Good, Feel Better was really good. It is a very nice group of women giving you a very nice assortment of makeup and teaching you how to apply it. Sort of like a Mary Kay party with wigs (if you've ever been to one of those). Some good tips about skin/nail/scalp care going through chemo, too. I had some GI pains on the way there and throughout the session, and at one point, I went into the bathroom stall and just cried a little bit, trying to hold myself together. But I figured I'd have the pains whether I was there or at home, so I stayed. My beloved (step) daughter Kelly was with me and she was very supportive. I sat across from a 32 year old woman with non-Hodgkins lymphoma. Her treatment sounded awful - she is attached to a 24 hour/day IV pump to her PICC line for 5 days out of every 3 weeks. She said she is sick the entire period in between and then has a few brief ok days and then starts again. At one point, they opened some make up to put on her and the smell got to her and she started to vomit and ran out of the room. It was pretty upsetting. There was also a college girl who had leukemia and just had a bone marrow transplant. Plus an assortment of older women with bc. It was a fun time and everyone was friendly, but there was an aura of sadness about it for me as well. I came home very tired from it (but happy with my make up kit!) If they hold this program in your area, I would definitely recommend it.
Other than that, I am doing ok. The hot flashes are regressing somewhat. I am sleeping better. My stomach is basically ok with some abdominal spasms periodically. The supplements the alternative doctor suggested are definitely working.
I know I am halfway through the treatments and am glad.BUT - all that being said, this whole thing really does still suck. I know you all understand, and I am continually so glad to have found this safe haven.
Amy
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Amy, glad you are doing well! I did the Look Good program too - was disappointed the instructor didn't want to do anything with wigs, and i was the youngest one in the room, but otherwise it was a nice distraction and the makeup kit is awesome!
What supplements are you taking? Are they for your hot flashes? I'm needing something since I found out I shouldn't take black cohosh either.
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Hi everyone.....I have not posted in awhile....I have my last of 4 pre surgery chemos tomorrow. I feel like i have missed so much of what has been going on with everyone. I kind of feel bad and sad. I am really glad I did this trial, but it seems like everyone is so far ahead of me in thier treatments......I still have another month of pills to take....then surgery, then AC and radiation and Herceptin.....it just seems like the whole thing is taking forever. I am also scared about the surgery and the AC chemo.....I feel like my family has seen me do ok on this trial......well I did end up in the hospital, but I guess I am worried I will not handle the AC as well. It seems like all of you have been going through so much with it. I know we are strong....and I will get through it. But now that I am on the last one of the trial...I have to go through all of the scans again and have another biopsy.....ugh.....better to give it everything I can, but I am just getting tired. Not to mention I have been planning my daughters HS graduation party for this weekend. Sometimes I just want to scream.....and I know that is ok.....I guess that is part of why I am posting now.....just got to let it out somewhere. Thanks for listening.
Oh yeah....I also did a Look Good Feel Better.....I liked the bag of goodies....but I too had a less then enthusiastic instructor.....she did not go over the wigs or scarves until one of us asked....and she could not get her vcr to work and just seemed lost on what to do. I would still reccommend to everyone to do it though as the best part was hanging out with the other ladies. I was also the youngest one there, but we are all in the same boat, so it was lots of fun just sitting there bald with the other ladies having a good time.
ok....really now....thanks for letting me vent!
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Hi tulipbebe,
My appetite is gone too about 3-14+ days after chemo. And nothing tastes good any of the time. And some things like berries taste BAD, very bitter. The first round I had bad sores too and all I could manage sometimes was ice cream, pudding, custard for a few days. Everything starchy or fruity just stung my mouth and tongue. You might try milkshakes with added whey protein, and sip through a straw. Can you handle almond milk? That's pretty good for you too, if you're just drinking and not eating much. This second round I've avoided the sores somehow but digestion was worse.
On the anemia -- although by the h/h I'm pretty anemic (my red cells are small but enough), I don't feel like it's a problem. I can get around fine, I'm not short of breath. So hopefully your doc will let you get by without the shot if it's not a real problem for your daily life yet.
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I start my first of 12 weekly Taxol and Herceptin infusions tomorrow. Stephaine, how did it go? I am relieved to be done with AC, but nervous about the potential side effects of the Taxol. I am ready, though, to start this chapter in my treatment.
I seem to have caught a cold, let's hope my numbers are okay to start treatment.
One of my daughters has a fever, she had strep last week and today woke up with a fever. The school won't allow her back for 7 days, yes 7 days! So, I'll be home recovering from chemo with a 7 year old. I really really doubt she has the flu, right now, it's just a fever and headache when her temp is up, but she isn't acting flu like.
It's all a house of cards, you know. Trying to coordinate chemo around life. So, now my daughter with a fever will go to my mothers house for the day. Let's hope my mother doesn't catch anything!
Wish me luck tomorrow and then for the next 6 days hanging out with my daughter!
Pam
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Welcome back giglgrl! Not all of us have had horrible times on A/C. I did my last round yesterday and all in all it wasn't nearly as bad as I had expected. The mouth sores and fatique are what got me the most. Everyone is so different, so you may not experience some things that others have. What trial are you doing that kept you out of surgery and chemo? Enjoy your daughter's party and let others help you make it happen. Remember no one expects as much from you as you expect from yourself. Tammy
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Hi Pam I am here
Ok Taxol went well. They will give you benedryl and an anti acid by IV most likely. They also gave me an anti nausea just to be sure (emend) but my doc is still saying that the nausea will be nothing like AC. I can tell you I feel pretty good tonight and am not noticing any muscle or bone pain yet other than my back but I have residual pain from the Neulasta still I am pretty sure I am not sure how long it will take for bone pain to show up if it is going to - I only asked how long the pain will be there if it does and he said one to two days.
I was so sick that last round that i have forgotten how i felt the day of AC to be honest. But I have zero nausea right now and only have residual tiredness from the benedryl. NO ALLERGIC REACTION for me. It will be the same for you
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Hi dbOak,
I did get another shot of Procrit. The Onc said in the past Procrit was abused but he will monitor everything carefully. Since I've been passing out a couple times last week, he said I better have the shot. Also, he may give me a blood transfusion. Being that it's not my own blood type, the blood cycle will only last about 1-3 weeks. So he said that's not a long term solution either.
I'm having the sore mouth/throat cycle now. Trying to do everything liquid now. But I find that if I drink something that so much has some nutrients in it, I run to the toilet straight after 5 minutes. I tried almond milk but didn't quite like it. I will try a few more brands. I am liking Silk Soy Milk and will probably stick to that as well. I've also tried rice milk but didn't like the sugar-free version.
But I'm totally relieved to be done from AC. Looking forward to T but am also afraid of the new SE. Will do my MUGA this saturday to see if my heart's ok for Herceptin. Will do T with Herceptin on Monday. I've heard of Herceptin weight gain as well. A necessary evil I guess.
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sandlee79, I know I'm a little late on this, but just had time to read everyone's posts for the last couple of weeks. After my first tx, I had a huge blister on the bottom/side of my heel. It was 1 3/4" x 3/4". I went to see my oncologist, who said he had no idea what it was; he put me on an antibiotic. After the second tx, I got another blister just above the old one, and one on the bottom of my big toe. After my last treatment (#3) I got two new ones up higher on my heel. They are now all peeling several layers deep. I didn't even bother telling the dr. about it after that first time.
For those of you suffering with mouth sores, I have had canker sores off and on my whole life. I found some treatments that were helpful for me: Mix equal amounts of Milk of Magnesia and Liquid Benadryl. Swish 1 tsp. in your mouth for one minute and spit out. Repeat every 4-6 hours. If you have a couple of sores, you can dab with equal parts of water & peroxide, then follow it with Milk of Magnesia. I heard using wet black tea bags could help too.
Hope everyone is SE free! Three down, one more to go!
Linda
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I had my first Taxol/Herceptin infusion today. It was uneventful, thank goodness. I felt like I was there forever because they infuse so slowly the first time. The premeds (benadryl, decadron and pepcid) made me sleepy so I dozed a bit. My husband came with me, but had to leave after about 3 hours to get to work, so I was solo for awhile, but that was okay, just boring. I am mostly tired from all the meds, I think and am hoping for a good nights' sleep.
Stephanie, how are you doing today, after yesterday's Taxol infusion? Hoping you escape the bone pain!
My blood count is low (28, don't know what that means), my nurse is hopeful it goes back up on it's own. She mentioned infusions and lost me there. I'm hopeful it goes back up. I'd like to avoid any other procedures!
My daughter seem to have caught the flu or something like it. She had strep throat last week, and a cold the week before that. I managed to catch her cold, miss strep and am hoping to miss her mystery fever. Her school said she has to be out for 7 days, so she's home with me until next Tuesday!
I'm hoping this medicine is easier than the AC, wouldn't that be nice!
Pam
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Pam I am doing very well actually. So far I am feeling a ton better than I ever did on AC. THe only problem I am noticing are my hands are starting to hurt. I took some tylenol and it seems to have relieved it some. It is hard to explain but it is like the joints in my hands are sore when I move my fingers and thumb.(it is more annoying than terribly painful so don't worry ok) Otherwise no pain anywhere and I do not feel too much fatigue at all. No nausea still. It is like night and day really. If it stays this way I would say we have great days ahead!
I am sorry to hear your daughter is so sick. I am curious about your 28 count. Is that the White Blood Cells? Normally they would count them as thousands - mine was 4900 on Monday, which is on the very low side of normal. They would like them anywhere from the 4500 to 10000 mark I believe. Otherwise I dont know a whole lot about the numbers. Hopefully someone will read your post who might understand what that count is referring too. Perhaps Red Blood Cells?
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Stephanie, I'm glad to hear you are doing so well. I heard about the potential for extremity pain. I hope the tylenol helps you.
The 28 is my red blood cell count. I guess it's on the low or anemic side. I should ask to see what it means. My nurse thought the Taxol wouldn't make it lower and it should go back up a little on it's own. If it doesnt', then they look at a transfusion I think. There is only so much medical information I can absorb when I'm on benadryl and steroids, you know! I'll let you know if I find anything out. My white blood count was okay, I didnt' get the number, but she said everything else was okay, and since she is very forthcoming, I believe her.
I hope you continue to feel good. I'm really hopeful that the Taxol and Herceptin combo will be a lot easier. I'm so looking forward to this summer, if I'm able to enjoy it!
Have a good night!
Pam
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Stephanie--I had my first taxol infusion today and I agree that it was easier than the AC. I just feel tired from the benadryl but no nausea. I still have to take the neulasta shots--do you? Lets see what tommorow brings. Just 3 more treatments!
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Good morning all -
ljh58 - I can tell you that there are some days that I too feel very emotionally mixed. It is frustrating because I am usually an upbeat person but especially when I was on AC there would be days I would just cry and cry and whine just like you said. I have very supportive friends who have told me I am allowed to whine. I really think that the chemo makes our hormones all messed up nevermind that we dont have hair and don't feel like ourselves.
TMD - Doc says no Neulasta for me on Taxol - and I am grateful. If for some reason my WBC dropped then we would need to he said but for now we are going at it with nothing. YAHOO I say.
Pam - Ok day two after Taxol/Avastin infusion I am feeling a tad bit tired, nothing like AC though. No nausea or stomach issues. Still have the hand pain but Tylenol is still helping keep the edge off of it. This afternoon would normally be when I start feeling the effects of the neulasta shot so I am anxious to see how I feel as the day goes on. I am pleasantly surprised with how I am feeling so far. No bone or muscle pain as of yet.
I am praying that all of you are having a great morning - try and stay strong and remember that we are tough ladies and can get through this.
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Ijh58: First don't start smoking...glad you got past it this time. I do smoke and have for about 15 years, one of the first things I am planning is quitting on July 1st. Last thing we need is smoking on top of everything else. I believe its totally normal to have a mental roller coaster. With what we are going through we are entitled to have our moments. Our way of venting. My doctor put me on a depression medicine which I figured I would try and really had no plans of staying on it. However I now am so glad that I don't cry at the drop of a pin and even with chemo brain can think more rationally. I was having panic attacks and mood swings far worse than bipolar...it was hell on me and as bad on my DH. I just finished my last treatment yesterday and have my shot today and am so glad to have the depression medicine because it is helping me cope with now and the future. The plan is I won't be on it for a long time, just a short term fix to help me cope with the past months of events and help me cope with the slow progress to "normal". Hang in there they say it gets better and I know it will. We had a lot dumped in our laps and however we can cope with it all is okay...do it your way. I am so glad you are here with us all and do post anytime there is a huge amount of wonderful support here...sure helps me every day. Good luck to you Ijh58.
Nadine
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I haven't checked in for a while, been busy trying to keep up with work and life while fighting fatigue. My mum is over from England to stay with me through the end of my treatment and has been a god send - we are joking that we will start hiring her out to the neighborhood to pull weeds and do laundry once she has helped me catch up!
Went to a friend's wedding in North Carolina last weekend and had a nice couple of days' break there.
Got my 4th (of 6) TAC yesterday, go for Neulasta this afternoon. So far my SEs have been relatively mild, mainly wierd digestion (5 days of constipation then flips the other way until my next TX) and messed up taste buds. I've noticed that I need to add sugar to berries and I can't drink coffee at all - just too bitter! And last night I tried some asparagus - one of my favorite veggies normally - and it was horrible. I've also gone into temporary (I hope) menopause and suffering with the hot flashes especially since we had the air con fail in our house in NC last weekend, and the same thing here in VA this week! Air con is fixed now - but I will be asking my doc about the black cohosh as I am triple neg hopefully I will be OK to take it.
Good luck to everyone, Louise.
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