August 2013 Chemo Sisters
Comments
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Beeve so sorry for the diahrea I am right there with you. Right when I got over the naseau and felt like eating know this. Will try the BRAT diet today! The SE have not been kind to me.
Carolpr56 glad you had a good day yesterday and hope it continues.
Couaragilicious so sorry you are having to go through this and have had your plans changed. God will definitely give you the strength to to put your son to bed at night. I was diagnosed the same as you and I am doing 4 x TC. I have one under my belt..... Yipeeeee!
My question to you all is that I had hoped to try to get some normalcy back in my life and work on my off weeks of chemo the second and third week. I am lucky enough not to have to work financially because of STD, but wanted to showup to say I can do this! After this week of every side effect imaginable should I try to go in on Monday or just let go and let this time be about healing and focusing on me and gaining strength for the next chemo round. Work has been very understanding but one always questions how long that will last. Any suggestions would be greatly appreciated.
Wish me luck I go in to the PS for another fill today after a dbl masectomy. I do not like these TE, but that is a whole different discussion board! Hugs to you all!!! -
Hey, gas hold - I'm up, eating my Cheerios and milk before tea, so I can take my steroid. Had my first tx yesterday, am planning to shower and have the DH drive me to work. I feel a bit "off", but since that might be a "good day" from now on I figured I'd best make the effort, lol! Light meals and hydrate, hydrate hydrate!
My tx room has 52 chairs- a bit different from yours! Yours might be more homey, though, so take your own ice Ina little cooler, eh? I heard that my infusions are 7000USD, and the same for neulasta, so I'm glad for my insurance but also a teeny bit envious of your healthcare!
(Oh, and if you want the purple wig, go for it! Whose cancer IS this, anyway? )
Cougar, so horribly sorry for your situation! You will definitely be in my prayers! -
Cougarlicious (does this mean you're a cougar???)
Take a breath, you can do this. If you doctors are recommending a certain course of treatment, they believe it is not only safe for you and your baby, but also that is it the right treatment for you now. They are on your side.
My prayers go out to you, your baby and your family.
The light of God surrounds you. The love of God enfolds you. The power of God protects you. The precence of God watches over you. Wherever you are God IS and where God is all is well!
Peace through the journey!
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Hair stories . . .
What's going on with your hair? Please list how many treatments you've had and the condition of your hair. Thanks!
Today is day 5 post 1st treatment. Nothing to report on my hair.
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Hi Shary, My nickname in the family is Sherry. So we'll talk Shary to Sherry! I'm glad to see another granny on here. I'm a great grandmother to twin girls, age 2. I can't let them grow up not knowing my love for them so I'm fighting this monster with God's help. Actually, I'm helping God. He's doing the work! PEACE, What you're going through losing your hair, is one of my biggies, too. I haven't even started chemo, but .I'm worrying about it. I ordered a wig. I hope it looks like the picture, otherwise, I'll be shopping around for some hats. LINDSAY, Let us know how the Look Good Feel Good class is. I am considering going to one when I start not recognizing myself in the mirror. You get to keep the makeup. That' really nice. You can get online and look up how to put on eyebrows that actually look real. I already have the tools to do that. BABERUTH, It looks like you and I have different types of BC. I have TNBC, but C is C, no matter how we look at it. ASHLEY, There are at least 2 grandmothers on here so we'll take you under our winags. You're a beautiful girl and all of this will not change that. You will come out on the other side of this just as beautiful as ever. I am adding your name to my prayer list. I pray every day for my friends and family. You're just one of my new friends. LINDSAY, I have been overloading my husband with my emotions. I'm sure he'll be glad I'm in this forum. He's a great support. I hope that all of you have someone in your lives to hold you up. LISA, I'm glad you told us that you felt bad going to the Look Good meting with hair. I will be conscious of that when I go. I think I'll either wear a hat or wait until my hair falls out. Thanks for telling us about that. I didn't think of it. JNP, Thanks for sharing the interval between surgery and chemo. My surgery was July 12, and my appointment to get this ball rolling is Monday, Aug. 19. Since I'm 68, I expect a lot of pretestning before chemo, so I'm thinking I won't start chemo until maybe the next week. GASHGOLD, I told everyone straight up. That made every church in my community put my name on their prayer list. I as even on a prayer list far downstate from where I live because I have a friend there. A stranger messaged me to say he was praying, even though I have never met him. That is so comforting I feel like a weight has been lifted. I'm too windy, so I'll stop here. You guys are the greatest since apple pie. Sharon (Sherry)
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Cougerlicious, my heart goes out to you, you are the second one that has posted being young and being Dx with this beast just recently. My girls are 21 and 23, my grandson is just over 1 year old and my daughter has been having some female issues due to stress ( mom having BC) and a new job and doc said he would normaly treat with b/c pills but given my Dx he does not want her taking b/c. And they want to have another baby in the next couple of years so he said no IUD and just to be careful😕Crazy how this disease just keeps giving and giving. This is a great place for info and support, take care and keep us posted.
Shary🌞 -
hi ladies, hope everyone is doing well!! Well, I showed up for my first chemo and ....delayed!!!! my incision is still open ( about the size of a small peach pit)...So no chemo!! I am so frustrated I want to scream!!!! But I pulled my big girl pants up and I am ready to go on the 22nd!! Thank you EVERYONE for the well wishes! You ladies are awesome!!!!
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Yesterday was Gatorade, Ginger Ale, saltines and a banana, still I have the diarrhea and the bad headache, and the strangest cramps ever but that could me my dystonia acting up. Instead of the confined to below your belly button cramps of normal diarrhea, these are my entire side, on the outside of my ribcage - like a giant stitch in the side and a charliehorse at the same time, so I am also taking some muscle relaxants for that.
But I have my followup appointment today, so I will be seeing a nurse. They told me that my headache is probably dehydration but I don't buy it because I'm was a major water guzzler before and since my first treatment, I've been easily drinking two or three times my usual water intake. Aleve and Imodium aren't cutting either the runs or the headache, maybe they'll give me a better pain option. I'm already tired of living like this and it's only been a week. Oh well, into each life...
I'm also concerned only because everyone else seems to be have 4 treatments and they have me down for 6, so is my risk that much higher or are they just overcautious?
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Beeve, it is likely the specifics of yoru cancer HER2+ PR -, number of nodes, etc. also soem drugs are stronger or work on dfferent typesof cancer so I have only 4 of AC but trust me, my own is later stage than yours. It willbe followed by 12 weekly of T so I don't fall over form the 4 dose dense T treatmetns that soemone younger might get. I am 47 for the next threee weeks.
As to the quesiton of hair, I am on day 14 of ACx4 and have light shedding until yesterday when the pubes decided to leave (sorry for the indiscretion). Not all of them; in fact not even 1/4 of them but in noticable numbers. The day after my first treatment however my hair (head) instantly became dry and roguh feeling. This may be because this is a recurrence for me. also, hair on legs has no intention of leaving it appears and I refuse to shave until this is over.
Thank you all for creating this community with your messages of support for one another. I can't do the naming each name thing well but I am thinking of and praying for each of you.
V
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Hi beeve, Your 6 treatments might be because you're Her2 positive. I'm negative for all 3 so I'm triple negative and my tumor was less than 1 cm. No meds for the next 5 years for triple negative. We just wing it and try to keep on top of a new tumor forming. I am hitting it with every gun I have. They didn't want to give me chemo because of my age, but triple negative has no known targeting agent, so I chose chemo. I'll only have 4 rounds every 3 weeks because of the size of the tumor. Good luck. Hang in there because I'm going to be looking at how you're doing to judge how I'm doing. We can do this together. Sherry
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By the way, as to ports my own was very painful process done the day before my first infuisaion. I was in so much pain. they couldn't access the port also do to some kind of problem so they used my arm vein. It is 15 days post todya and the two wounds (up near neck and at port sight are not yet full healed although i was told that they would heal within a week.
V
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HVV, That sounds traumatic. Do you know if I will need a port with only 4 cycles of chemo? I hope not. Hope you're feeling better soon.
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Hockeymommy, I am with you there. I was suppose to also start today and was put off until next Tues due to dental issues. They don't want me starting if there is any chance of infection going on. I'm very upset and frustrated, this has pushed me out three weeks so far. I am now 9 weeks post surgery. This makes me very nervous.
Cougar and Ashley, sending you both positive thoughts and prayers to help you get through this. I am so sorry you both have to go through this with so much else going on. We can all share our strength in order to assist each other during these "challenging" (for use of a non swear word) times.
After trying on expensive wigs, I received one I had bought off ebay for about 10.00. The look actually isn't too bad except the color is rather a reflective gold shimmer, it might blind someone if the light hits it right.
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Shary, it was terrible. I was awake and in pain throughout the entire procedure; nightmare stuff. Then in signficnant pain for over a week. Okay, I'll stop now. Given 4 cycles i wouldn't think so. i did 4 last year with no port althoguh they wanted to give me one as it is convenient for the nursing staff.
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HVV, after hearing your traumatic story, I think I'll try not to get one! My core needle biopsy was traumatic enough. She only numbed about 1/2 of the area.
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Shalimar, My wig came today and it was coal black. I ordered honey wheat! It looked like a skunk without the white stripe, no highlights at all. I'm going to the American Cancer Society. They give free wigs. Maybe one will be ok. I had better round up some hats fast if I expect to keep on subbing. By the way, if I am around high-school kids while taking chemo, will I be prone to infection the whole three week period in between treatments? I was thinking I would not sub the first week after treatment. Does anyone know? I have heard of teachers teaching the whole time.
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Oh Sharon, funny about the wig. Guess we just never know. Maybe we can dye them..? ha.
About your other question, and I'm not pretending I really know anything, but I saw a Breast Specialist for a consultation/second opinion. I asked her about avoiding other people. She just said to be smart. Of course avoid anyone you think might be sick. Just be very vigilant about washing your hands and not touching any mucus membranes such as your eyes. Let's hear from others..
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Shalimar, Thanks. That makes sense, but at school, there is always someone sneezing or wheezing. I would like to make at least enough to pay gas money. My oncologists are 45 minutes away. When I do radiation, that will take a chunk of change. I'll just play it by ear. I have been using raw honey to sweeten coffee. I saw where we should not eat anything raw including honey. I dropped an $8 jar of raw honey on the ceramic tile floor last week! What a mess. I cried more for the $8 than for the honey. Then I turned around and knocked my new jar of wheat germ off and broke it. I guess I'm nervous, do you think?
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Togetherness, I'm in the same dilema with work - I have STD so I get 66% of my paycheck, which is the equivelant of part time, so unless I can go back for a significant amount of time at a full time schedule, it just doesn't make sense to go back. Plus my STD requires a 7-day waiting period each time I go out, which is 7 days unpaid, so when I do decide to go back, I need to know that I'm back for good. For that reason I will probably opt to just stay out until either my treatments are over or I've had at least 2 cycles where I'm fully functional. I don't want to be gone that long, but it seems worse to have to call in sick constantly if I don't know how I'm going to feel each day. Anyway, that's how I'm looking at it.
I got my port on Monday, and finally today I'm in a lot less pain. The procedure itself was a cinch - as soon as they hit me with the "mild" sedative I took a nap, and woke up just as they were finishing up. Once the topical anesthetic wore off a few hours later though, holy crap. It gave me a screaming headache (that could have been partially a caffeine headache though since I wasn't allowed to eat or drink anything that morning), and I couldn't turn my head - I moved like I had whiplash. Yesterday was similar - I put myself back on full pain meds and muscle relaxants, but it still hurt a ton. For whatever reason though today I'm better - not out of pain but better. I absolutely cannot imagine getting chemo with this thing yet though, it makes my stomach hurt to think about it. So I guess anyone debating the port, I'd say make sure you have at least a week in between insertion and chemo if you can help it.
Hugs to all!
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The port made chemo a breeze! No pain and stick was easy...I was 4days past insertion, still hurt to touch but not bad. I am very glad to have it, and I am having "only" 4cycles. Rather a port than risk blowing my veins.
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Hi everyone, I had my port put in this morning. My neck is a little stiff and surprisingly no pain. Did I get lucky or is it too early. Myhusband was with me and he and the nurse stepped out and I wanted to scream and cry as I knew this is the beginning, but then I thought about this thread and the encouragement I received and I kept my cool.
Hugs and love to all -
Jelly, I double emphasize the week into between port insertion and chemo. It went so much better I feel since the site was healed.
Sherry, I understand your concern about the port but everyone is different. My insertion was really easy so little pain and I was asleep the whole time though apparently talking to the surgeon according to the nurses. I told them as long as I didn't give him my bank account number we were fine!
Recovery went well too. Though compared to the horrible staph infection that happened with my breast surgery everything has been fine compared to that.
FMG, it's now 14 days out and not one hair has budged. Whew. It's a waiting game!
Cougarlicious I am so glad you're able to be here to find support. I hope we can help even a little. Hugs to you and your little one and the one on the way.
My daughter is 12 and I know this is hard on her as a middle schooler in a different way--it will really make her feel like she sticks out which of course she doesn't want to do.
Now I have a new side effect! Ugh! Bitter mouth and sore throat! Ugh again! Anyway the onco's office moved up my blood count test to tomorrow to see if I have thrush!
No not a bird a mouth infection. Stupid stupid chemo!
Oh well ladies all of you take care! I'm going to rinse out my mouth... -
Jelly thanks for you input. My STD sounds like yours, so you helped confirm I need to wait until I can be fully functional instead of being in and out. Plus I have a high stress job and who needs that at this point. I do not have a port and hope my veins can withstand all this poking and prodding.
Lisasp I hope you dont have to deal with bird mouth infection
. It made me laugh though!!
I have a friend who is very artsy drop off two hats that are blinged out!!! She wrote on them one says Warrior in Piink and the other says Fight Like a Girl! She understands how much I am dreading loosing my hair. I have seven wigs one for everyday of the week. Guess what I probably will wear scarves since I live in FL. At least I am prepared.
Everyone have a good evening!! Better days ahead!!
Wishing you all relaxation!! -
It is great to read everyone's comments each evening. Today was a great day for me. I hope for more days like this to come. Managed to make a spinning class at my local YMCA which definitely helped my water intake.
I had my port put in on a Monday and my first chemo treatment that Thursday. I slept most of Tuesday recovering from the surgery. I felt rather good by Thursday. I used the lidocaine cream on the port site and had the nurse spray the site before inserting the needle. There was no pain. I returned on Friday for fluids and Neulasta. Wishing those just getting started little to no pain and SE. I did experience constipation following the chemo but Imodium and daily walks helped fix that issue.
I called my oncologist today to request a change in my treatment plan to allow for more frequent treatments. Maybe I am crazy but I figure I am feeling good so might as well push the treatment along to get this nasty stuff out of me! So instead of AC every 21 days it will be every 14 days and I already have one down, ya!
What is your experience with Taxol once a week for 12 weeks? If anyone has gone through this yet. Taxol is my second treatment after the AC is finished.
Wishing everyone a restful night. School starts for the kiddos here on Monday. Meet the first grade teacher on Friday and back to high school for the 16 year old... -
Wow! It sounds like you all have everything under control with those ports. I will know on Monday whether I have to get one. I really hope I don't. Ugh! After sending that dreadful wig back to VogueWigs.com, I went to a small community hairdresser closeby who works for the American Cancer Society. She helps people in the salon who need wigs and other things like soap, hats, brushes, etc. It was all free! I was just lucky, I guess, or God is watching out for me, because out of the very few wigs she had, there was one and only one human hair wig. It was exactly the color of my hair. I will go back tomorrow to have it styled like my hair. I put it on tonight and pinned it back so it looked like my style. I sat across the table from my husband of 50 years and he did not notice. Well, possibly, he wouldn't notice if my hair had been on fire!!! My 8-year-old granddaughter did not know I had on a wig either. I encourage all of you to go to your local ACS to take advantage of the free things that will help you through this journey. I feel so much better tonight knowing I am ready when my hair falls out. I hope everyone going in for treatment tomorrow has a good day. God bless you all.
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I did start with some mouth tenderness today so will try the 1tsp salt-1tsp baking soda solution my nurse suggested. I read previously that someone was using a Biotin type mouthwash. Can you buy that anywhere or just from your dentist? I use ACT mouthwash regularly but figure that I may need to make a change during chemo treatments.
Oh and today was not perfect but a pretty good day. I did start off nauseated but popped a quick pill, ate some breakfast and pushed through it. -
Sharonannebaker, glad to hear you found a wig that works for you. Thanks for the laugh about your husband not noticing if your hair was on fire. I enjoyed the giggle
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Lindsey, Biotene mouthwash is available over the counter - I got mine at Target, but I'm pretty sure Walmart would carry it too - it's with all the other mouthwashes. I used it years ago when I got my tongue pierced, it helped the soreness a lot if I remember correctly.
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And I found biotene at the grocery store!
The worst I am feeling right now is (I can tell) is from the steroids. We have a bad history ; ) They hype me up in a not so pleasant way.
Lindsey, I thought Imodium is an anti- diarrheal? I'm still experimenting with an arsenal of meds, constipation being a pre-existing condition of mine... : ( It's a delicate balance. -
I am day 9 after first tx. I used the cold caps, so am waiting to see if I will lose my hair. I have done ok re: SE, and am feeling fine. But I guess any SE can come over you at any point in the process-- is that right? And the effects of tx are cumulative, so a good experience with first tx doesn't necesarily mean you'll have same experience in subsequent txs-- again, is that how you all understand it?
It is a difficult journey, and i am grateful to be sharing it here.
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