Taxotere, Carboplatin and Herceptin
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Also the FINHER study found excellent results with 9 weeks of herceptin.
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mtndawn, good luck on surgery. I had heard that less Herceptin was just as good as 18 so hopefully if your EF does not come up it will work for you.
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I start chemo in a couple weeks - TCH x 18, then Herceptin every three weeks for a year. I see lots of folks on the TCH x 6 regimin - anyone experienced with TCH x 18? Prior to myself, I've never even had anyone close to me deal with cancer, so I have absolutely no idea what to expect. I see that certain days appear to be pretty "standard" to feel bad on the x6 regimin... hopefully that doesn't mean that doing it weekly will make me sick all the time for the next 4 1/2 months...?!?!
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Another question... what about nutritional stuff / supplements/ whatever that will help? And neulastin...how bad are the SE's from that? Basically, I know NOTHING - I feel like I'm flying blind into a horrible place with no navigation equipment. Any info will be greatly appreciated.
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Hi Betty - Welcome! Most likely you will have a 'chemo class' before you start treatment. They will explain the side effects that may happen, tell you what medications to take to control the side effects. My class was the week before my first treatment. The supplements that are accepted seem to depend on each practice so I would talk to your oncologist office about those.
Neulasta - this is a shot that is usually given the day after chemotherapy to stimulate the bone marrow to produce more white blood cells. Usually you take a Claritin type medication each day for a few days and tylenol or other pain reliever in case you have any pain.
They will give you medication for nausea too. I don't know how the 18x schedule goes. I am on the TCHx6 and just did my second treatment Tuesday.
It is good that you are here. There are wonderful supportive and educated women on this site that can offer so much AND we understand what you are going through!
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bbryant04, I am so sorry you have to join the club here. I also wonder if you miss understood about how many treatments you are to take. Most take Taxol or Taxotere & Carboplatin or Cytoxin for 4 weeks or 6 weeks but you skip it 2 weeks and then have another. the Herceptin which is the H in TCH is given every week so the weeks in between the TC you will get the H. I may be wrong and I know onc have different ways of doing things. I would certainly ask a lot of questions. I took 6 tx of TC and 19 of Herceptin. I was looking at your diag and I can't see why they would give you more TC than anyone else unless it is a lower dose than the rest of us took. Keep coming here and you will get lots of support. As for nutrition I can't say anything except don't eat your favorite food why you are feeling bad after tx. You will not want to ever eat that again. I would eat lite the first time you take a tx and snack often the next few days. I took my tx on Wed. and did fine until Sat. and then the next 2 weeks I did not feel good and then finally I would pull out of it and start to feel better just in time for the next TC. I was happy to be able to go back the weeks between the TC for H so I could talk to the nurses to find out about how I was doing. blood pressure etc. You may not have to take Neulasta. At first they gave me Neupogen for 5 days but it just did not work so they started giving me Neulasta the day after TC. I had bone pain but a lot of people took the plain claritin and they said it helped. I never did take that because I took Benadrayl for other things. Go to the top of the page under Logout where it says search and type in any word or phase and you should get some information from others. You do not have to put a name to find out about a subject. Try to relax because not everything that has happened to others will happen to you. Just make sure you have stuff for diarrhea, constipation and the chemo place should give you some scripts for nausea and also steroids. If you get a chance to go to a chemo class before do go. It helps but as you go you will see how you will react. Good Luck! You may think you will never get through this but you will. A lot of us did. I am almost 2 yrs past TC and a yr past H. My hair is growing good and if I did not have scars I would forget I had been through this. As many say " This is doable" Please stay in touch here for support when you feel like it. Oh! the most important is drink plenty of water or liquids to stay hydrated. No caffeine! Keep the fluids going. it helps with constipation and also if you have diarrhea you will need it too.
Carolyn
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bbryant04 - I know exactly how you feel! The doctors and nurses act like you should know everything. I still feel blind and I've done research, asked a zillion questions and so on... It can make you feel so alone. That's why these discussion boards are wonderful.
The only thing the nurse told me in my "chemo class" (wasn't much of a class just her throwing pamphlets at me), was to eat healthy and avoid anything that could have bacteria like Sushi or even raw veggies. She did say you could eat raw vegetables if you cleaned them really well. Of course that scared me a bit, but I got over it and figured as long as you use common sense it should be ok.
Like others have said, drink plenty of water. I had my first round of TCH almost 3 weeks ago, gearing up for my 2nd and I found that water, water, water was a good thing. It will start to taste funny due to chemo, but drink it anyway. I did have Coke on hand for my upset stomach, but didn't really need it. I had an upset stomach more from constipation and then diarrhea rather than any nausea.
Everyone is different though, so you won't really know how you'll react until the first round or maybe even further in. I wash achey like I've never felt before, like a truck ran me over and then dragged me for miles. The nurse said that was from the Taxotere and also the Nuelesta shot. I'm planning to prep better this time for the Nuelesta shot, take Claritin like the folks have suggested here.
This is a crazy train and I'd like to get off, but my stop is still further down the tracks so I'm hanging on and trying to navigate the crazy ride!
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Hi Betty,
Welcome, and take heart that while it is no fun, you will get through it. Read back on the posts to get some advice. I've never heard of having TCH every week for 18 weeks-- sounds intense. Perhaps it's what Carolyn said-- H every week, TC every three? Let us know.
The Neulasta really works for most of us-- keeps the white blood cell count up, which keeps you stronger and out of the hospital. I took Claritin (which I take anyway) and added some Advil and Tylenol for about a day of the Neulasta pain, and then I was fine.
And if you can get Emend, get it!! A wonder drug-- most people, including me, had no nausea at all thanks to Emend.
I had a lot of intestinal trouble, though, and that's common. Tons of water and a bland diet. Basically eat high-fiber healthy the week heading into chemo, to help prevent constipation, which the steroids trigger; Benefiber and Miralax will also help with that. Then on chemo day switch to a very bland, easily digestible diet-- no fiber, no veggies, no beans. Kind of the BRAT diet for a week or so, until you start to get an actual appetite again. And make yourself eat a little something every few hours, even if you're not hungry-- a totally empty stomach makes the cramps worse.
Hang tough and before you know it, you'll be moving on.
Colleen
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Betty, I imagine if you go every week, it will be for 1/3 of the dose. I don't know if that lessens the se's or not. I had TCH x 6. My se's were rashes, burpy gas, hair falling out, awful taste, and low counts. I took benedryl and probiotics, which really helped those first 2. I had to have neulasta shots my last three cycles. I didn't notice any side effects from it at all. My onc doesn't want most supplements. I was already taking vit D, and that was fine to continue. Hopefully, your questions will be answered in you chemo class.
My surgery is over, and I am home. It went pretty well. I got a glimpse of my new foobs today, and they were much nicer than I expected.
My husband just said I'm like an old person, as he was putting my two new prescriptions on the counter with all the others. Heh. Well I'll take all of at least one of those since its antibiotics. Enough rambling for today.
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Okay - I stalked the Onc. office staff till I had my own private chemo class. Got all of my questions answered, I think - all of 'em so far, anyway. I walked away feeling, once again, like I can do this. My treatment is TCH x 6 and H for a year. T&C every 3rd week with H in between for 18 weeks, then every 3rd week. Probably the same as most of you guys?
I start on October 4th. Think I'm getting the portacath on Sep. 27th.
Hubby and I went hair shopping today. I was afraid it would be a traumatic day, especially for him, but actually we had a good day. I found a GREAT place in Jacksonville - a specialty shop for breast cancer club members. She has EVERYTHING you need, from prosthetics to hair, to swimwear, etc. I've decided I'm going to go ahead and get my hair cut next weekend to about shoulder length and start playing with my "new" hair so I can learn how to style it while I still have normal hair. And Hubby can gradually get used to the new style. He doesn't do change well...I told him we could do it like contact lenses - a couple hours a day until it's not uncomfortable anymore. LOL! Anyway, I think we'll be able to get through this...
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bbryant, I am glad you got the class even though it was a private one. actually much better that way they could answer any questions without others questions which may not pertain to you. When I went there were 3 of us with cancer but all had a different kind of cancer. I am glad you had a good day shopping. I never wore the wig but hats and scarves. I donated my hair before I found out I had cancer and so I was used to short hair. My husband was very shocked it was so short but I needed to have enough to donate. Little did I know what was coming next but when I did lose my hair it was only shoulder length. It was growing like crazy so I wonder if it was because of cancer. There are lots of places to donate hair. I donated to Locks of Love and if you have not cut your hair you might do that. It is for children that lose their hair for different reasons. I lost mine in one spot when I was a child so that is why I chose to do that. You will like having a port after a while but at first it feels weird. I still have mine and my onc told me indefinitely. I was shocked because I wanted it out but if I need it again I have it and I got dehydrated again when I tried the trial med so it was good I still had it. Most people don't have any problems with their port but as with everything else I did. Mine turned on it's side because I lost too much weight they said. I can live with it. Everyone has given you good information.
mtndawn, I am glad your surgery is over and everything will look great from here on. I am an old person and feel much older than my 63 years right now. I sort of wish I had had a double mast and new boobs but I still have old ones with a big ole scar across one but I know they thought it was best to try to save them. I have a weird under arm too where they took out so many lymph nodes. At least I have no under arm hair and haven't for years so that is good.
I wish everyone a good day. summer is almost over! Enjoy while you can.
Carolyn
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Dear Betty,
I'm glad to see the helpful advice you're getting. I'm getting taxotere, carboplatin, and herceptin every three weeks. I've had two treatments and will have my third on Tuesday (in two days). I'm 53 years old.
Thus far, I've kept all of the hair on my head (while losing hair on the rest of my body) by using the Penguin Cold Caps. If you are interested in learning more about these caps, google "Penguin Cold Caps," and also the "Rapunzel Project," or send me a private message Plus, there's a useful thread on Penguin Cold Caps on breastcancer.org though some of the women are using Gelcaps (I think that's what they're called) rather than Penguin Cold Cap and my impression is that Penguin Cold Caps are more effective:
http://community.breastcancer.org/forum/6/topic/735873?page=35#idx_1046
There is no question that using the Penguin Cold Caps is a lot of hullabaloo -- a lot of effort. That said, I'm very happy to have all my hair at this stage in the chemo process. Many doctors and nurses are very skeptical that these caps work. My oncologist was simultaneously skeptical, encouraging that I try the caps, and super interested in the outcome. He and his nurses have told me they will believe the caps are working if I come to my third appointment -- that is, the appointment in 2 days -- with all my hair. I have complete confidence that I will have all my hair on Tuesday and I'm looking forward to everyone's reaction.
You also asked about nutrition. I have found two books really helpful on nutrition to prevent both the occurence and the re-occurence of breast cancer. The first book is called Anti-Cancer (by David Servan-Screiber); and the second book is called Cancer: 50 Essential Things to Do (by Greg Anderson). Although I had what many would consider a healthy diet, I changed my diet substantially after reading these books. The key steps? Eliminating white sugar and white flour from my diet (and diet coke and virtually all processed foods). I also take a number of supplements (including Glutamin) and perhaps they're helping too. This is a challenge of chemo: It's very difficult to pinpoint what's helping and what's not in managing the side effects, because so many things are changing in your body anyway, as a result of the chemo and Neulasta, etc.
As others have mentioned, drinking a LOT is key -- perhaps especially the day before chemo, the day after chemo, and the week or two after chemo too.
What else? My doctors and others have emphasized that the more exercise one does, the better. My husband and I were already big walkers and we've kept that up. I've recently returned to the exercise classes I've always loved (step aerobics) but couldn't do following my bilateral mastectomy. It feels great to be back at my gym, though I'm certainly taking it easy relative to what I did before my surgery.
Oh, one more thing: During my first chemo, I drank hot tea and other liquids. After chemo, my mouth felt quite yucky for nearly 10 days, I think. My taste buds were off and my mouth felt like I'd scalded it all over. During my second chemo, I chewed ice during the actual chemo infusion (not while I was getting Herceptin), and my mouth felt much beter after chemo -- far fewer side-effects.
Good luck to you! You are smart to be asking lots of questions and getting lots of information and advice -- though that can be overwhelming too, I know.
Katherine
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I used the elasto-gel caps and have had two TCH treatments. I don't think we were able to keep my head cold enough and my hair has been continuously falling out - pretty much evenly all over. I still have hair but its getting pretty thin. I suspect the penguin caps may work better or I needed to use the other caps in a different way. I am also icing my fingers and toes to prevent nail damage during the taxotere and sucking on ice cubes as well. I agree with the observations and advice from Katherine.
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Very good advice from everyone but I do suggest if you take any vit&minerals please ask onc about them because it may have side effects or cause your chemo not to work as well. I do not and did not take vit but I know some have and it helped but my onc said no supplements for me. My case may be a different story but I would be sure to tell onc everything you take even if over the counter. Biotin was one thing that is supposed to promote hair growth but he said NO to that also. You can get it in your food but I have forgotten what has it. he told me to eat healthy and so I try but it is hard to keep weight off and eat healthy!
I hope everyone is doing good today.
Carolyn
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True, my onc said no to coQ10 but ok for glutamine.
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Betty~
Another "Cold Cap" girl here...
I ended chemo in March and I was on TCH. I used the Penguin Cold Caps and I only lost hair by my ears. It was an extremely cold experience but one that I feel was worth it.
Hugs to you...
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I am glad the Penguin cold Caps work. I did eat ice during my chemo to keep the mouth sores away. I got really bad moth sores when I drank hot coffee the second tx because it was so cold in there but I never did that again after I got them healed. It was awful. anyone starting eat crushed ice. My chemo lab furnished it. anything to help I would try now. I did not know about the caps when I was taking it.
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PCR! PCR! I want to shout it from the rooftops, PCR! The long night is over; the morning breaks. The clouds have lifted; the sun now shines. The report given in committee, though not yet seen in writing by the surgeon - PCR! (pathologic complete response, no cancer found)
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Congrats mtndawn!
I had the same results when I had my surgery on 6/21.
It is great to get this news, and I am thankful that Herceptin is around for us!
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Congrats mtndawn and stlcardsfan~
I am wondering if I did surgery first, then chemo and finishing Herceptin end of November how can I believe that everything is ok? My onc. said she does not scan afterwards and will only scan in the future if I have any problems. I have to believe in the power of Positive Thinking...
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The BEST NEWS EVER MtnDawn! Congrats! I too had a PCR!
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Mtndawn - I am soooooo happy for you!!!!!!0
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I am so happy for everyone who has good reports. I wish everyone the best.
Carolyn
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Mtndawn, YIPPEEEEE
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This Nov will be 2 years since I had my last TC. sometimes does not seem like it and others seems like it has been longer ago. it was a year in July since last H and I just can't believe it. How do they count how long it has been since you are a survivor? I had surgery in June 2008 to take the tumor and lymph nodes out so is that when I was starting my recovery or after chemo? No one at the chemo place says any thing like that so I do not know when the five year survivor is. I know probably does not matter but would like to have my port out but then he did say indefinitely.
I hope everyone had a good weekend. We are cool here finally and we are supposed to have beautiful weather this week. I am so glad it is not hot or cold, just right!
Carolyn
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Ladies, after you chemo regimen, did you have radiation tx? And did you experience any not-so-nice SEs? After only 4 tx I have shooting pains in my breast and an aching in the underarm area where the nodes were removed. I am terrified of lymphedema and fear that these signs could be the start of that or worse. Not sure I want to endure 29 more tx over the next 6 weeks. Am thinking of bailing out on rads and just sticking with Herceptin. Thank God for Herceptin.
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Bon - I have rads scheduled after the TC is completed. I haven't seen the rad onc since July so don't know how much yet. Did your rad onc explain why we need rads after chemo? Doesn't chemo work on any leftover cancer cells in the breast? I don't understand that part.0
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Hi, Bon and all,
I hear you on the fear of lymphedema, but wanted to drop in here and reassure you about that. First, MOST women who are treated for breast cancer never develop lymphedema (though it's impossible to say ahead of time who will and who won't). But since we're all at risk, there are simple risk reduction strategies we can all take that can help, and knowing what they are can reduce the worry and fear too:
http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm
Second, even if you were to develop lymphedema, there is treatment available (and it doesn't involve drugs or surgery!
) Being aware of it as you are means you'd catch it early, which makes it much easier to treat and control.It can be really helpful to get a referral to a well-qualified lymphedema therapist now, for an early evaluation, baseline arm measurements, and personalized risk reduction tips. Here's how to find a well-trained one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
And of course you're all more than welcome to stop by the "Lymphedema After Surgery" forum here any time and ask questions -- lots of gals there who are well informed and mighty friendly!
Hoping you never join our "swell" sorority!
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Bon, I had rad and I had burns and pain and low blood count. I was totally miserable and I tried to bail out but they would not let me. I am well now as far as the rad. I did not want to do it to start with and the onc and rad doc both said I had to do it to keep the cancer from coming back. So I did it. I said right after the rad if I had my choice I would not do it but I am not sure what I would do now. they did say for me to keep coming back every so often but I did not see any need for that. All they do is look at me without clothes and it made me very uncomfortable so I never made another appointment and they never called me. My onc checks me over once a month and he does not make me feel uncomfortable. You will probably have some pain off and on after rads even but it is nothing to be afraid of unless it is unbearable. If that happens do talk to someone about it.
Carolyn
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For those of you doing this treatment, how many are receiving herceptin every week between chemo weeks as well as with TC? I only get my herceptin every three weeks with chemo. Would really love to compare notes.
Thanks,Michelle
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