Taxotere, Carboplatin and Herceptin
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amelie - I take 2500mg (1 caplet thingy) and I am using Bosley products for shampoo/conditioner/hair growth serum. My hair came verrryyy slowly, but now looks good. Are you on Tamoxifen/AI? That could also increase your knee pain.
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Anyone get SE's from being on just Herceptin? I keep thinking once chemo done, the Herceptin Tx's will be piece of cake, but maybe I'm wrong.
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Judy, I have only had 2 H tx since chemo, but no SE's. After the first solo H i got a really sore neck and shoulder for a couple of days, but that may have been coincidence, I was fine after the 2nd. I have the 3rd on Wednesday.0
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If you look on the Herceptin web site they list a lot of the common side effects. Myalgia is one of them. It has hit me hard for at least a day after the infusion. I also had the chills and couldnt get warm.
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Judy I did notice I was less stiff once the Herceptin treatments were over.0
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WARNING; SERIOUS RANT TO FOLLOW!
Question....did anyone have less than 6 TCH treatments due to side effects? It seems to me that we do not really know how many it takes to provide protection...or not. They pick a number, design a protocol, and the stats we have are based on the population result to that somewhat random number. Who is to say that 6 is better than 4 or 8 or 2 or 12? It's just the number they picked to study, so that's what we know. We also only know that x% of the population studied were still alive and/or disease free in x years. We do not know how any given individual will respond to anything. It also seems to me that for HER2+ tumors, the Herceptin is the really important part anyway. There is conversation in the research world about doing trials to see if Herceptin alone grants the same or similar results as combination with TC. In 10 years, maybe that will be the standard of care, who knows? Therefore, my reasoning is that if unmanageable side effects are really that intolerable, perhaps I am better off not continuing to torture myself without clear/known benefit.
I have posted before about severe nausea. I have now completed 3 of 6 recommended TCH treatments. Each round only gets worse. The nausea is so debilitating I literally am in bed for nearly a week each time, and let me say I have always before handled illness/pain fairly well and kept going through pretty much anything. This is unlike anything I have ever experienced and any worse than any chemo nightmare I ever dreamed could be. If I read one more post about how "doable" chemo is, I don't know what I may say or do.
Yes, I have talked with my MO. Repeatedly. I receive both Emend and Aloxi during treatments, and have tried all of the following in various combinations with no relief: Zofran, Compazine, Phenergan, Haldol, Ativan, and Kytril. MO says there are just about 10% of people who cannot be managed, and apparently I'm in that group. That is not what was said pre-chemo. I was told how great the meds were, and how I wouldn't have to be miserable. That is pretty much what I have seen on these boards as well..."no one should have to have nausea nowadays." Yeah, well; let me inform you differently! We have also tried alternative therapies (ginger, acupuncture, sea bands, probiotics, etc) without effect.
I won't even waste time complaining about fatigue, joint aches, chemobrain,weight gain, hair loss, diarrhea, UTI's, taste changes, runny eyes/nose, etc etc. That is all annoying, but such is life. If we could just control the nausea, I could suck it up and deal. Totally.The nausea is just unbearable and unrelenting.
I have felt so bad for so long, I honestly cannot imagine ever feeling anything close to normal ever again. I have stopped looking forward to returning to enjoyable life activities because that feels completely impossible. Yes, I have a therapist, and yes, I am on Ativan and Effexor. Aside from the post steroid crash that causes predictable hystericalness on about day 5 post chemo, I don't think I'm seriously depressed. This is just the reality I'm living with."Being positive" like Pollyanna does not fix it. I am tired of that phrase also.
People doing Zumba?????!!!!!!?????? Seriously, are you kidding me? I might as well try to fly to the moon. Climbing one flight of stairs in my home is enough to set my pulse racing to the point I have to sit down for a few minutes before I can do whatever I went up there for. And whoever said they looked great during chemo....well, kudos to you...but I am a bald, fat, steroid bloated, boobless wonder. Not a helpful statement. Yes, I think I'm finally angry.
I'm not sure what I want anyone to say. I just don't have anywhere else to let it out. Yes, my family is supportive, but you cannot understand this till you've lived it. I guess my frustration is that even here, I don't tend to find many people saying "yes, this is God-awful!" It's all sunshine and light, and "it's not so bad." I certainly don't want anyone else to feel this badly and I don't suppose that all of us having a pity party is helpful either, but I guess I thought it would be more real or that more people would be experiencing the same kinds of things.
My fourth treatment and next MO appointment is scheduled for 2/2/12. I plan to have the treatment that day, but also am seriously considering calling a halt to the TC at that point. Just can't do it anymore.
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Hi Darlam
I am so sorry you are having this level of SE's from your tx's. I hear your frustration and anger. I think that part of the reason you don't see too many people posting about the same kind of trouble you are having is for that very reason - they are not one of the unlucky 10% who experience the severity of the SE's like you are having. I HAVE heard of women who react the way you do, on many occasions, it is just that you are the minority, unfortunately. Some call it being "allergic" to the drugs etc. And yes I have heard of women stopping treatment early for this very reason. You have every right to do so. Only you can make that decision. A friend of mine who had similar reactions spent 2-3 days in the hospital getting fluids and IV anti-nausea drugs to help combat the SE's. It worked for her, yes it was inconvenient and not pleasant but she made the decision to try it. Obviously you need to have a real sit down with your onc and make a decision. Again I am sorry you are going through this and I hope you can come to a place where you find peace in whatever it is you decide to do.
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darlam - What about a dose reduction for number 4? (((hugs)))0
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Darlam I too have hear of a few woman that can't get a handle on the nausea. All I can say is just be sure they tried every med. Sometimes they don't want to prescribe certain ones because the are much more expensive than the others.
Sucks that this is happening to you.
My chemo binder said some women get nail issues but it was rare… and that's all they said. OMFG did I get nail issues.Every single toe and finger. Hurt like hell too. They oozed and smelled. Just gross. I'm a year PFC and I still have a few lifted fingernails, toenails look like crap and they all have huge ridges. I used to have really nice nails. But that's they way the dice fell. All I can say is the discomfort does end. I too had several days where I was "I don't want to play anymore" but I figured that hitting it hard now will hopefully prevent me from ever having to take this poison again.
Do let your onc know you are close to calling it quits. S/he might switch meds or something.
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Darlam - From one fat, bald, boobless wonder to another - It's your body, and you get to make the choice of what you need to do. Have you discussed a dose reduction with your Onc? I know mine offered to reduce my dose due to neuropathy. We also reduced my steroid dose by half because I was having problems with my blood pressure and my heart was racing. I just finished my final dose of TCH 3 weeks ago. This was definitely not a cakewalk!!!
I hope you and your Onc can discuss a plan of action that will help ease your nausea.
Wishing you good luck and relief from your nausea.
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Darlam...
I had horrible nausea and vomiting after my first treatment. My doctors have a no vomiting "rule"....they will do everything they can so that you feel as good as possible. I, too, got fluids 2 times during my first tx, the 2nd wasn't near as bad....This is what my dr. prescribed:
Sancuso Patch. You put it on the day of treatment and you wear it for 7 days. It is the same medicine as Emmend. You can still take compazine (which I did) for any break through nausea. It is an expensive drug (350.00 a patch)but worth every penny.
I had extreme SEs after my 1st tx that I did not want to do it ever again. I had severe bone pain from the taxotere, which is SUPER rare...so much so...they don't tell you that it can happen. I also had the severe chills and shakes. I do understand your pain!!!!!! During my 2nd tx, I had a reaction to the Herceptin...that was lovely!
I go for tx #3 on Wednesday. I am not looking forward to it...but know that I only have 3 more after that. Do talk to your dr. about the patch. There is also Skelaxin (Metaxalone) that is a heavy duty anti nausea drug. I think I have every anti nausea drug out there in my bag of drugs.
Hang in there...we can do this!!!!!
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Judy,
I have some stiffness for Herceptin,but only in the mornings. Other than that, I have no side effects. I think it might be slowing down my hair growth, but who knows if it really has anything to do with that.
Darlam, I am sorry you are having a difficult time, but I understand. I have heard of several people who had 4 because of the side effects. Nausea is hard to handle and I am sorry that nothing is working for you. It will be over soon, and you will feel better! You are more than half way done.
This may be way out there, but have you considered medical marijuana? I am not sure if it is legal where you live, but it might be something for you to consider. One of the nurses at the infusion clinic brought it up when I had a hard time after my second treatment. It is not legal where I live, and fortunately I did not have severe SEs the remaining treatments. I had other issues, but got through them. Now it is all just a bad memory!
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Darlam, so sorry you are having such awful SE's. Makes me feel bad for complaining because so far I am hating chemo and I haven't had it nearly as bad as you. I thing whatever decision you make about treatment will be right for you. I agree that the Herceptin is probably the most important part.
Ask about a scopolamine patch for next time. Not sure if it will work or not but it's worth asking.
Hope your next tx goes easier.
Thanks guys for the Herceptin feedback.
Had a patient today who is a 6 year cancer survivor. She is totally bummed because her hair didn't come back all the way. Very fine and wispy and her scalp shows through. I so hope that doesn't happen to me.
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Darlam,
You can vent here...that's what we're here for. We're not all goodness and light. At least I'm not.
I'm sorry your SE suck so bad. I would feel EXACTLY the same way if nausea was out of control...give me a broken arm over that anyday!
I remember during my tx there was some talk in the research about doing a trial of 4 TCH vs 6. I asked my Onco about it...he laughed at me. BUT if you search I believe we talked about it here in the Jan time frame last year...and maybe even linked it.
I worked out every day while on chemo and didn't feel it was that bad. Don't throw anything at me...because then there is this. I look back now and see what a fog I was operating under. I was so determined to remain "normal" I almost killed myself once. I pushed and pushed my body to do things I don't do NOW that I'm off chemo.
And you are right...partly because of what I read here. I'd have a SE and tell myself, oh that's not real, it's all in my head....that's BS! And I wonder if I'd have really paid attention if I would have been able to detect my heart damage sooner.
Oh well, now I'll never know.
All that to say, if you feel like Sh*t, and are pissed off....feel like sh*t and be pissed off! We can take it.
The only other thing I might suggest is ask your Onc for something that will make you sleep, hard core. Not Ambien, something that puts you out cold like a bat to the head.
If your body refuses to respond to the nausea meds, then put that puppy to sleep. I can't imagine you're too active being so ill. So maybe if on the two or three worst days (or the week) you SLEEP through it...maybe it won't be so bad. (yeah I know) There is a drug they gave me in the hospital, dang I can't remember the name...it puts me out in two seconds flat.
That's all I got. I'm so sorry this is happening to you.
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judy my hair came in fuller. Also I had some receding prior to diagnosis. Most of that came back too. Some women do have some hair challenge but most of us don't. I thought for sure since I seemed to get the less common SE that my hair wouldn't come back. It did… and I've been on Anastrozole for almost a year too. That so far hasn't thinned my hair either.0
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Quick question- just completed herceptin #16. Anybody else get 17 and 1/3 doses? I get #17 in 3 weeks and get 1/3 dose to finish 3/6. Anybody else???
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I had 17 herceptins. Not sure what you mean 1/3 does to finish 3/6
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kriskat - just 17 for me too.
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I will get a 1/3 of a dose-or dose u would get if u got it weekly-on March 6. That will be my last-so in total 17 and 1/3 doses. Not complaining just hadn't heard antbody else's onc do it that way!
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I see. I didn't get it weekly. I got it every 3 weeks, 17 full doses total
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I had 18.
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Omaz that's because your special
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Ahh, there is some calculation they do depending on your weight and stuff. I was going to have 17 but then they said there was some problem with the calculation so they needed to do 18. Maybe those with 17 didn't have the calculation problem.
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My Onc said H for a full year. I started Feb 11 and will end Feb10.
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Darlam, I had weird uncontrollable nausea/vomiting too. Mine wasn't as bad as yours, but my problem was that I would be feeling fine and then suddenly vomit - even in week 3 of the cycle. Toward the end, I just couldn't eat anything in the evening because that is when it was worst and anything would come right back up.
I guess it wasn't as bad as feeling nauseous all the time but the unpredictability was a pain. The first time it happened I was on a business trip at dinner with a couple of colleagues; went to the restroom and while sitting there suddenly vomited. Fortunately we were eating in the hotel so I ducked into the elevator hoping no other conference attendees would board, got to my room, changed my shirt and tidy up, then went back down to the table to explain my absence and why I didn't feel like eating the rest of my soup.
One important thing: make sure they check your magnesium level. It wasn't checked in my regular chemo blood tests but was in the final blood checks after finishing chemo. Mine was super low - I had to have IV bags of it twice and was on a supplement for months to get it back to normal. You can lose a lot if you are vomiting and magnesium is a very important mineral to a lot of body functions.
My onc did reduce my dosage once for the Taxotere and Carboplatin and later reduced the Carboplatin even more (more because of low platelets and high creatinine than the vomiting thing). She even suggested stopping after the 4th chemo, but by then I was feeling that as long as I was going through this I might as well finish it out.
There is a study underway on 4 cycles of Taxotere and Cytoxan, but I'm not sure if that is only for Stage I or not. HERA got better results for Herceptin along with chemo than for Herceptin after chemo so there is generally thought that the combination is more effective than Herceptin alone. But I think they are considering doing just Herceptin at least for some of Stage I.
Kriskat, 3 weeks times 17 is 51 weeks so slightly less than a year. Many oncologists feel that 17 weeks is close enough to a year and just give 17. They have had good results in Europe with 18 weeks of Herceptin though I don't think there has been a random trial comparing the two directly. Given that, it is hard to believe that there is any magic in geting 52 weeks instead of 51. But my oncologist was going to give me 18 doses so that I had Herceptin for a full year. I happened to have a 2-week business trip to Europe and one of the last doses would have fallen in the middle so she ended up giving me two two week doses instead and I had exactly a year.
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Darlam,
So sorry it is so crappy for you. When I got a second opinion at Dana Farber, with the head of the med onc breast cancer dept there, he told me about the taxol and herception x 4 study they were in the middle of. He rec'd more standard treatment for me because of the tumor size, 1.7 cms and because I had evidence of lymphovascular invasion. But he said that if I refused the standard treatment, or if my side effects were intolerable, that he would offer me the study protocol outside of the study. He said he had a lot of confidence in the protocol, but just didn't have the results yet as proof. Now mind you he's running the study, but this is his whole professional life, so I got the idea that there must be research that supports the idea that this protocol may give good results.
As you know, each time I have had to go back to chemo,I have wanted to call it quits, thinking, surely I have gotten enough drugs to do the job. My friends keep telling me, give it everything you have now so it doesn't spread, and honestly, I wouldn't do chemo again if i did get metastasizes. So iI have gone back.
But while I have felt like crap, your level of side effects sounds worse.I also don't work during my crappy time. I don't do much, hang around the house, and on one especially bad day self medicated with percocet leftover from my surgery. The idea of sleeping through those days may be helpful. The thought of weed has also occurred to me.
There is no right answer here. There is just the answer that you can live with. None of us knows right now if our treatment will work. We just know the odds.
I also know you are much more than a boobless, bloated, bald ......woman. I think that is part of what's so hard about this. The treatment, by being so physically grueling, eats away at our identity. I have had so little to give to my colleagues, and I'm definitely way less patient mom to my 7 yr old - sometimes I wish she wasn't even around. But we will get ourselves back when this is over. We will feel normal again and have the energy to fully participate in our lives. I know you will.
You will make the right decision.
-will be thinking about you, -lisa0 -
Blue- that's why I am getting the 17 full doses and the extra one third dose- to equal the 52 weeks. That one third dose would be the amount I would get if I were getting herceptin weekly Vs every 3 weeks. Does that make sense?
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amelie rose, thanks for asking, my BS thinks it's a normal node, why is it so hard, not sure, but she thinks it is not abnormal, will check with her again if it remains that way
darlam sorry to hear that, im on ondasetrom.... or similar and dexamethasone and they both do the trick, im truly sorry u are going through that
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I had 18.
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