TC chemo- what can i expect?
I'm pretty sad today, my oncotype score came back at 20, and with the new TAILOR DX study happening right now it seems as if this is not the comfortable mid ground it once was. Add to this mix that I'm 39 and my wonderful oncologist really affirmed my decision that doing chemo is the right thing for me.
So I start next week. And I'm looking for the low-down. What are 4 rounds of TC really like? What can I expect to feel like? I'm sad about losing my hair, worried about "appearing" sick in front of my two small, adorable children (4 and 6) and overall just plain anxious about the weeks ahead.
Has anyone done this and can tell me what to expect? Will I feel well enough to go for a coffee? Exercise? Cook and clean a bit? Will my brain instantly become a fog? Any information is gratefully accepted.
I'm just off now to the newly diagnosed area- I stongly believe in paying it forward! I can't believe how i felt two months ago and more useful, powerful and informed I feel now.
again, thanks to all of you...this place is truly incredible....
Comments
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Hi sweeny,
I finished my 4 TC's one year ago. You will find many on this board who call it doable. I never threw up or such. I will be honest that the first week I did not feel like myself but managed well. I did not go to work but probably could have . Your mouth will feel funny, tastes are different, stomach is a little queasy but all in all manageable.
To be honest my real memory of the chemo had to do with the loss of my hair. After all is finished the hair comes back so slowly.
You will do fine. At times you will be a little under the weather but I am sure you will manage fine.
I too chose chemo due to my oncotype score. I have no regrets that I did. D ojoin a board of ladies starting chemo with you. They will be an invaluable resource to you.
Check out the TC discussion group too.
Hugs,
Francine
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I had 6 TC txs rather than 4 but here's what happened with me. Was feeling fine till about 5 days after tx than I felt a little nasuse, I never had diarriah, just loose stools. This lasted for about a week and then I was fine until the next tx. Before I started tx I decided to buzz cut my head, it was a way that I could control one aspect of this. and what was left started to fall out 14 days after first tx.I felt alittle more fatigued and took a short mid-afternoon nap. I'm now 11 wks. out from last tx and my hair has started to come back. It's slow but it is happening. Hope this helps.
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Hi Sweeney,
I'm 3 weeks out from my last TC (4 rounds). All in all I found it to be very doable. Typically all 4 cycles followed the same path for me - day of and da after infusion felt ok, day 3 started coming down from steroids so felt tired mainly, days 4-6 worst days in cycle just felt blah - no nausea but had no energy, felt like I was in a fog, mouth was soreset on these days also, after that would gradually build up until by the end of week one I was feeling pretty ok. Weeks 2 and 3 as long as I was careful not to overdo it I felt ok to do things. I didn't work during chemo but some people do. I found overall that there were lots of 'little' things - dry eyes, taste issues yes (lemon juice helps a bit), a bit of eye twitching, I had headaches during first cycle but I think my scalp was sore from my hair falling out (which really started by day 15 cycle 1, I shaved by day 18).
My biggest issue was that I had a reaction to the taxotere during the infusion - don't be afraid if this happens to you, the nurses were quick to stop it and gave me extra meds and I was fine when it re-started. If you feel strange at all during the infusion tell the nurses straight away and you'll be fine I promise! I wish I had known earlier - but the best thing that a nurse did during my 4th was to start it off slowly and gradually increase it and I had no reactions on the 4th one so that seems to be the key!
Good luck, feel free to PM if you have questions.
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Hi Sweeney,
I did 4 rounds this time last year. It was doable. I followed all the instructions i.e. steroids 3 days before, laxatives to avoid constipation, painkillers etc. In fact I felt so good after the first round i ate some chilly. What a mistake! I ended up with terrible mouth sores. So advice - avoid spicy food. Apart from that I had minor bone aches, twitching eyes and felt tired after day 3. I got lots of rest which helped. Drank lots of water too. My other 3 cycles were very uneventful. Lost all body hair day 18 after 1st cycle. Very traumatic emotionally but I had already selected a wig so that eased the blow.
I saw more side effects after treatment had finished. I lost nails on both big toes, they became tender then loose then I noticed a new nail growing underneath so just removed the dead nail on top. Not painful though. My fingernails were also tender and had ridges. they came loose approx. halfway down the nailbed. More irritating and ugly than anything else. Still losing eyelashes periodically. My eyebrows are not back to pre-chemo yet.
I think that is it! Honestly it is not bad. Just follow instructions and you'll be fine. I followed the TC thread and it was very helpful to know that what I was experiencing was normal.
You can do it!
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Hi Sweeney - I finished four rounds of TC back in Feb. of this year. There's a very good thread called "Anyone on just Taxotere and Cytoxan" here on BC.org.
You might also want to connect on the Canadian thread "The Canadian Connection...calling all canadian women"
If you want any tips, please send me a private message and I can send you an email.
Sherri
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Hello Sweeney - I finished four rounds of TC mid-June. Worked through the whole thing other than taking the day of treatment off. Very bad constipation after round one - was ready for it after that. Had an allergic reaction at each treatment so the nurses watched me and gave me additional "stuff", also put me on a slow drip for round three and four. Hair started to go on day 14 after last treatment. Lost all sense of taste. Eyelids twitched and very watery eyes after fourth treatment. Days 5-8 felt like flu after each treatment. Nails not looking too great right now - were OK until after the last treatment. Drink lots of water, rest as much as you can.
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Hi Sweeney I kept my hands in ice water and think that is what saved my nails since I did lose my big toe nails months after I finished chemo. My eyebrows have never returned in any great numbers but I had thin eyebrows anyway just much thinnner now. I ate a lot of watermelon, the taste was ok and I had trouble with water tasting like metal. Had to watch for constipation since I had it on first round. By third treatment I was having stomach troubles around the 9th to 10th day ended up in the hospital once overnight with it. Really had to watch the spicy foods and fatty foods. I did not work during the treatment but did not have a lot of energy however I am older also. My grandkids liked to put my wig on and they thought it was funny for me to take it off and put it back on, great entertainment for them. I agree the thing I remember the most is how slowly hair grows back in. It is over yet you still have this bald head, I had trouble having patience with the process. My hair is back and I have lost most of the chemo hair that you get at first (very fine). I still have some chemo brain but again I am older so maybe it is harder to shake when in your sixties. Good Luck and remember we all say it is doable.
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I did six rounds and I not only did I chaperone a field trip to the exploratorium in SF, but I also registered my son for high school immediately after my last chemo. He was in Science Olympiad and we drove to Fresno for that, also during chemo.
Your children will noticed that towards the end, Mom is tired more than normal. You will want to eat take-out more than you used to. Your house will be messier. You will still be able to do all the things that are important to you. I did have to rest during the events I mentioned above - but I could go.
I worked during chemo, 6 hours a day. I found I couldn't stand wigs, which was too bad as I bought a whole bunch to change it up. But, scarves are softer. Nobody treated me any differently than they ever had, including strangers.
I am four months out, my hair has grown back silver and it looks like I have a pixie cut. I'd been dying it so long I had no idea what the regular color was! I'm 52 now, and never thought I'd like grey hair, but it's pretty, I'm surprised and i think I won't dye it back. My eyelashes fell out at the end but I've used Latisse and they are long again, same with brows. My nails got very week AFTER chemo, of all times. I couldn't even button a blouse without tearing them but they are now back to normal, strong enough so I just put gels on.
You'll find that the fear of chemo is way worse than the actual experience.
Follow the tips you'll find here and other places. I'm a big believer in drinking lots of water the day before, the day of, and for two days after chemo. I bought a 64 ounce brita pitcher, filled it up and drank away. You will also want to eat all high fiber foods for those days, to keep your system going. I never had nausea but you get constipated the first time so if you have that fiber in you, you can deal with it fine.
You'll lose your tastebuds but they come back. I was never a sweet lover. I am indifferent to cake and cookies and those kinds of things but I found that that was all I could taste during chemo, so we had that stuff around. Be careful if you struggle with weight though, because steroids make you hungry. And, I don't recommend you eat that kind of stuff right around chemo time because you really do need high fiber and want to know how your body reacts.
Good luck! The word you'll here a lot is "do-able" and that it is.
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My first one is today. I will let You know how it went.
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I came back Oncotype 21, in the same boat as you! I met with 2 oncologists, who both recommended chemo. I decided to pass on ACT (recommended by oncologist #1) as it seemed too agressive and I didn't like the office very much. The second oncologist recommended TC, 4 infusions, each 3 weeks apart. I had my first treatment July 16th, just over a week ago. Ditto to all the comments above, especially ones about constipation and water. Unfortunately I came down with a cold about 3 days after chemo. It seems to have compounded all the side effects (at least any flu like ones). I'm starting to feel better today at 10 days post.
Did anyone else find the steroids a problem? I was buzzing on them, unable to sit still. Then felt a huge crash a day after they stopped.
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Hi,
had my first round of T/C yesterday. I was fine during chemo, no reaction, on the way home felt a little nauseus, took medicine and felt fine. Felt asleep at 8:30 at night and slept until midnight and then no sleep at all until 5 or 6 am.
I am irritable (my poor little son would be better in daycare then with me), gained 5 pounds since yesterday (drank lots of water as being told), constipation is comming my way, strange taste in my mouth.
My nurse told me they have cases of hair falling off as soon as couple days after Tx, so going to buy my wig today.
How much of steroids are You on, I got prescription for three doses of 8 mg, I took it in am and pm the day before Tx and am of Tx, They gave me by IV one more dose when I came for Tx. I also got meds for three days post Tx for nasea and vomiting to be taken twice a day and Domperidone to be taken up to 4 times as needed. I think Domperidone made me sleepless as I took at at midnight with hope I would prevent constipation (no luck). Nurse told me if I can not sleep I could exchange it with Gravol and take some senocot for constipation.
Sorry this is so long.
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Hi Nikola,
I took 8 mg of dexamethasone 2x the day before, (total of 16 mg/day) same the day after. The day of chemo they gave me IV steroids and anti-nausea before TC. I have drugs for nausea, constipation, anxiety, and sleep...I'm a walking pharmacy at this point! Your irritation could very well be from the steroids, I felt that as well and understand it is a common side effect. Sleeplessness is also common. It takes a day or so to come down from the steroids...keep drinking water.
My next infusion is this coming Thursday, # 2.
Keep us posted as to how you are doing. From other posters I understand that days 3 to 5 post chemo can be the most difficult. I am now on week number 3 and feeling good, even gone back to my usual walking and gym program. Then, yesterday my hair started falling out. Although not unexpected, it was a surprise because I was feeling so good.
Hang in there. All of us who go through this are heros. Being a hero is like taking an adventure, never comfortable at the time.
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Hi all,
I'm now 55 hours past my chemo of TC and feeling pretty crappy. SO tired and achy. Is anyone else on a drug called Nulastrum? (Or something like that...), it's for building white blood cells, but the side effects are bone pain. And man am I feeling it....
Hope you're all well. Sweeney.:)
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Hi Sweeney,
I'm sorry you are uncomfortable. I understand that it can have some nasty side effects of it's own. I have not yet had the Nulasta shots and am hoping to avoid them. It is not standard practice at my oncologist's office when on TC therapy. They do a blood count the day before each treatment and make the decision at that time. You may want to put your post on the other forum (anyone on just T&C) as there are more folks who regularly check it. Some others on that thread recommend taking Aleve as it helps a lot. You may want to try it.
Wishing you a speedy recovery.
Liz
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Hi sweeny , hope side effects from neolasta wear off quickly , when the hospital pharmacist told me about it , I researched it and found about all side effects , so I didn't ask my oncologist to get it although I started with below normal white blood count , anyways ,the research I read says only temporary bone pain , so I'm sure you'll be fine soon , just take care of your self , now I'm 6 days after my first dose and I'm feeling only mild stomach issues , take care.
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Sweeney, Today I had my 3rd round of TC plus Herceptin. It's been a bumpy ride so far but doable.The side effects of general malaise and bone pain, even flu-like symptoms, usually come on the 3rd day after the chemo and intensify the 2nd day after Neulasta.
I started a forum in June,11 days before my chemo began. It's named "I'm Terrified of Chemotherapy". Now, weeks into it, I'm still nervous because this is no walk in the park. But I've learned lots of things that are helping me through and did a long post on July 21st outlining what I've discovered so far. You may find that July 21st entry useful in dealing with some of the everyday things that crop up or help to just make this journey a bit more tolerable.
Best of luck. Bon
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Sweeney, the anyone on just TC thread is a good one. (although bad name since there is not such a thing as just TC, my onc thinks its harder to get through then a lot of the regimens. I think they're all equally yuck, just each have their own set of problems).
Neulasta pain, many swear by a Clariton to take the day of your shot before you get it. Some did just that day, some for a few days after too. I was already on it so don't know how much it helped, but, can't hurt right? Some thought Aleve/motrin etc. helped. Personally I found an oxycodone the night of the injection when the bone pain was the worst made a HUGE difference in how the bone pain felt the next few days.
The achy muscles, remember them well. I found a light gentle yoga routine that I thought helped more then everything else I tried combined.
The one thing I can say if I had to do it all over again, I'd take more meds. I hated the constant pill taking and tried to not taking anything I didn't absolutely have to. I look back and think, what the heck, for those few months let them help you feel better. If I had to go back, I'd take more ativan and more actual pain medications.
Good luck, hope by the time you read this you are feeling a bit better
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Hi all,
Holy moly, what a huge variety of side effects from just about everyone! Hard to get ones mind wrapped around it. I am now 6 days out from my first treatment and feel great. One of the nurses said that most of the pain/SE hit at about 7-10 days so I'm hoping there isn't a rebound round of SE lurking around the corner.
StillVertical- I cannot believe what you went through. Thank god you actually are STILL VERTICAL. Good name choice.:)
Not much helped with the Neulasta bone pain, but I am going to ask my onc for some real pain meds to deal with it next time. Over the counter stuff just wasn't cutting it. I eventually went and took some steroids to deal with it. The onc is on vacation and the nurse just said take more steroids for the pain. They worked. Have lost 10 pounds this week though. Can't eat anything. And yesterday I popped a strawberry into my mouth and it tasted like I had eaten a piece of poop. Honestly, I've never tasted anything so absolutely disgusting in all my life.:)
Stay well ladies, I'll check out all the threads you mention. You're all awesome!
Sweeney
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Sweeney,
My onc waited 8 days to give me the Neulasta the first time but my WBC tanked so quickly after the chemo, he now gives it to me 24 hrs post tx. The goal is for it to boost up the WBC to acceptable and safer levels so you have some ability to fight infection. It is not without it's SEs, too, and sometimes it's difficult to tell if what you're feeling is from the chemo drugs, the nausea meds, the steroids or the Neulasta.
I am heartbroken for what StillVerticle has had to face, and it's issues like hers that made me so incredibly terrified to go forward with chemo. None of us would have gone through this is we knew the outcome would be like what StillVerticle has experienced. But the majority of cases DO NOT turn out like that. You will undoubtedly have some of the SEs everyone reads and talks about. But to have them all, in such a dramatic way, is just incredibly unusual. A risk, yes. What percentage of risk no one can say.
I got whopping a rash from the Taxotere 12 days after my 2nd tx. My onc wasn't convinced it was related to the chemo at all. So I phoned the manufacturer and worked my way to the Medical Info Department where they write the Rx info for docs, as well as the patient brochures. I went directly to the source to get clarification. I spent 30 years in medical research and knew that there were tests, trails and statistics to support or refute my issue. Don't be afraid to ask questions from anyone who might have the answer.
This website, www.breastcancer.org, is a total lifesaver. I did spend 30 years in medical research, hands-on, doing the patient testing, and eventually as the research administrator in charge of a two different federally funded clinical research centers at major medical schools on the east coast. We were doing Phase 2 and 3 clinical trials on cancer patients when these chemo drugs didn't have product names, just were known as the chemicals. I was terrified to start chemo. This website was the catalyst for my progression into chemo treatment. And now I'm more than 1/2 way through and hope to make it to the end, victorious and triumphant. (note: I'm telling you about my medical background, not because I believe that I have all the answers, but because I think it gave me a different perspective and may have actually hindered my recovery had I not found this website and been able to communicate with others who are going through this at the same time or who have recently been there to share their experiences and encouragement).
I'm sitting here, 18 hrs. after my 3rd TC+H tx and have a slight headache. Nothing terrible. I go for the injection in 6 hrs. If all holds true to the last two times, the wobbly legs will begin tomorrow and I'll be 'sofa surfing' for a few days. My driving isn't great for about 8 or 10 days because I am anemic now...RBC down and causes dizziness. That mixed with the motion of the car gets gives me what I call DUIC...driving under the influence of chemo. So during that time I allow my type A personality to literally take a backseat and I get chauffeured by family and friends if I need to go out at all. And I do work some almost every day. When my head is feeling 'fuzzy' I just avoid doing contracts and major business deals (personal and professional) for a a few days.
This isn't easy. I'll never paint a rosy picture of chemo and some peole have it so much worse than others. But it's DOABLE. I think it's a 'minute-by-minute' thing. I hear Michael McDonald singing that old Doobie Brothers song..."minute by minute...I keep holding on". One of the favorite things a woman named Jayne posted to me on the forum I'm terrified of chemotherapy is You Don't Have to Be Brave. You Just Have to Show Up. I love that. A friend made me an 8X11 framed poster of that with the Susan G. Komen pink ribbon running down the side. I have it on the bathroom vanity that this is about letting my faith overcome my fear.
Hugs to you and hoping that your chemo benefits are maximal and the SEs are minimal. Bon
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Hi Sweeney - as I said in an earlier post of you on this thread...I completed TC in Feb. of this year. I had very minor side effects. I was tired and a little achey around days 3-5 but rebounded after each treatment. I managed to exercise throughout chemo, which I think really helped a lot. The radiation knocked me out in terms of fatigue and worse than chemo in my opinion. I never had any nausea with the chemo. And, while it's no picnic...it was certainly doable in my case and I'm very glad that I opted in and took the treatment. I'm now at 25 weeks past my last treatment and my hair is growing in thick and curly. I trimmed/shaped coloured it and ditched the wig at extactly 12 after (May 7th) and have had it trimmed twice since May. Just had my roots done yesterday. Not everybody has a lot of side effects and not everyone has all of the ones they say "could" happen. Hang in there and be sure to put ice bags on your finger and toe nails during the full Taxotere infusion. It will help a lot. Also, chomp on ice chips through the infusion as that will help minimize mouth sores and the yucky taste in the mouth.
Sherri
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Oh my! How horrible StillVerticle, you have been through the worst! Sending prayers that your recovery can precede smoothly with your dream team. My first oncologist wanted to put me through 6 months of ACT, I understood that the Adriamycin can have long term effects on the heart (some of them showing up as far out as 10 years!) I consulted with a second oncologist who recommended the TC only, especially with an intermediate oncotype like mine.
Thanks for the advice Sweeny; I will check out the Taxotere website.
I am now on day 2 post chemo #2, still feeling pretty good. The Dr. decided to phase out the steroids slowly to prevent the crash I had last time and hopefully control the rash/hives. So I am taking 16 mg the day before, IV steroids day of, 16 mg day after, then 8, then 4. I'll let you know if that helps with side effects. I know a bit more of what to expect now, started with treatments for constipation the day of chemo and am giving myself more time to rest. More water, avoid sugar, and alcohol (had a hair cutting ceremony 2 days after the first chemo and drank 2 classes of champagne....MISTAKE!). Now alcohol tastes like battery acid.
My hair started coming out in clumps last Sat, so I had it shaved on Wednesday. I notice that I am loosing all peach fuzz on my face. Friends are commenting that my skin looks great. Small comfort.
Liz
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I appreciate that this site has so many encouraging posts, since it is easy to get lost in fear at a time like this. I had my first chemo on Wednesday, TC. While I was in the chemo room, the oncology nurse gave me a list of vitamins to take, which included mostly B vitamins with suggested levels, plus vitamin E, fish oil, and magnesium, along with other remedies for neuropathy, which I have been told is a side effect of taxotere. I went out and bought the amounts suggested, but now I have started looking around the web and worrying that these vitamins might interfere with the chemo's work. Any thoughts?
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Hi tulips, Just wondering why the onc nurse would give you the list, if any items on it might interfere with treatment. But if this is true, I would seriously question your oncology team. Hoping someone more knowledgeable than me answers your question because I will probably be starting chemo in a few weeks.
Best wishes!
yorkie
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I know that you have a point--why would the oncology nurse give me a sheet of vitamins to take if they weren't useful and safe? According to the net, people don't know everything about the subject of vitamins and chemo, but the nurse would be an expert more than most. I have always been a worrier, not liking to take anything into my body, and this worry just caught my attention and stuck there. Thanks for responding. I hope everything goes well for you. Tulip
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Hey Sweeney
How was the side effect..I am starting mine now..4-6 treatment of TC
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Hi Sharon,
I ended up having 4 TC treatments and in retrospect it wasn't that bad. I finished a long time ago now, back in November of 2010. But here's what I remember well, it wasn't as bad as I thought it was going to be. I hated losing my hair but now 18 months later its long enough to have a pony tail again.:)
I didn't have an upset stomach at all, I was very achy and headaches too. For the 3-5 day period after each treatment I felt pretty sick, like a bad flu bug- tired, achy, sore, weary, etc. Then it would pass and I'd have two weeks of feeling great until the next treatment. Radiation was hard b/c after 4 treatments of TC you're pretty beat up and tired at the end of it. Radiation just seems like icing on the cake and makes you more tired.
But you'll get through this, there will be some not so fun moments in the coming months but it will be over sooner than you think. PM if you want more info. I'll be thinking of you!
~Sweeney
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hi,
Just saw your post. You got the same treatment which I will be getting. TC 4 sessions. Hope you have recovered fully. Will you please share some of the after affects of chemo, what is it when you first get it. I will be getting one this week. Just little nervous but very positive.
Thanks
Summer
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Summer- Please come visit the Cytoxan/Taxotere Chemo Ladies-Feb/March 2013 discussion thread. Don't let the title of the thread think that this thread is not active--- it is active. Here is the link: http://community.breastcancer.org/forum/69/topic/800978?page=101#idx_3019. Please post your questions there so the gals on that thread can respond. I had 6 rounds of Cytoxan/Taxotere plus Herception ( via a clinical trial) and had my first round April 2012. You can also private message me if you would like. Wishing you the best!!!!
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hi my oncotype score was 19. I was recommended chemo because not only was the score just over the low range but 1 node was positive. My dx is Er+PR+ Her2- tumor 2 cm 1/4 positive with moderate differeniate. Had lumpectomy and 4cm margins are clear. Had node sentinel surgery at same time. I started tc for 4 rounds. I only did one so far and want to stop. After having met every women in that chemo room with me on day one who was back there with a secondary cancer years later that was linked to their chemo drugs. I was told I have a 12% chance of reoccurrence and it can be reduced by a third to 8% with chemo. But by doing so I just increased my risk of secondary cancer by 5%. They have been under reporting secondary cancers by 50% . It was reported that only 2.5% in a study of 20000+ women got secondary cancer but the number is actually double. It's 5%. My thing is this. I already took 1 round of Tc and round two three and four will be going thru the same veins and taking the same path so why go all the way. This poison went thru my veins already and should have destroyed what's there. Am I right. First of all the chemo was recommended as a precautionary measure. So you mean to tell me I'm taking a chemo that is linked to other cancers down the road and I'm only taking it as a precautionary measure. It doesn't make sense. I think I may even cut in half my radiation treatments as it too can cause lung cancer. One of the women being treated with chemo developed lung cancer after radiation. She was a retired gym teacher who never smoked or drank and kept in shape and just retired at 62. Do you I have your thumbs up on this. Just need some insight. Thanks
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hi hedj44,
I totally feel you. I also just finished my first cycle of TC and wondered if I should go on. My Oncotype Dx score is 22, 2.7 cm IDC, er+pr+ and HER2-. No node involvement. I will be 41 in a few days. Two doctors suggested TC and one doctor said no chemo. I went ahead thinking I want to put an end to this but I'm having second thoughts
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