TCH x4 vs x6 -- revisited

jenbal

Dear ladies,

This topic has been discussed recently -- and in fact I chimed in myself -- as to whether 4 TCH treatments for early stage, node negative HER2+ cancer is "enough". It seems from that earlier thread and everything I read and see, there's plenty of support for the idea that 4 is enough and with the risk of some of the nastier side effects (nail problems, neuropathy, ototoxicity, etc.) rising after #4, there's plenty of reason to stop. I'm facing this decision now -- and my onc has basically left it up to me.

So far I've had a fairly mild ride, so am reluctant to push my luck and eager to move past this phase. But still -- everytime I see more support for stopping at 4, I find myself resisting that conclusion. What do you think -- am I just a glutton for punishment, or is this some oblique message I'm receiving from my body or my god? Is it crazy of me to "want" to do more -- not just because I want to really whomp it good now but because somehow I think I haven't learned what I need to from this phase? Insights, advice most welcome.

mmm5

Hi Jenbal

Very hard decision, very personal and am firm believer that your gut will lead you the right way.

I was originally supposed to get 4xTCH, however my ONCOTYPE came back very high so my Onc switched me to 6x. Since then my 2nd Onc who is famous and administers the Bisphos trial to me states 4x could have been enough and may have been overtreated as I had no lymph nodes and no LVI. In many ways I am glad I pushed it because of all of the fear that comes after treatment, I can truly say I did everything. (bilat Mast, chemo, Hercpetin, AI, Trials etc etc.) The only thing that is tough is that it did a number on my white counts and I struggled with them for a year. (So I worry about my immune system)

One thing for you to consider is that you are not ER positive so chemo and Herceptin is your big gun to fight this. Try to meditate on this and see what your internal spirit/intuition says.

Good luck

Jaimieh

jenbal~ my Tumor was a 1c but we had the same receptors and I wanted to stop at 4 but my oncologist told me no.  He said that there wasn't any significant studies about 4 or 6 and all the studies where on 6.  So I completed the 6 which at the time was VERY, VERY difficult for me but I am now glad that I did the 6 . 

Good luck in your decision.  Only you can make the right decision for you

bluedasher

jenbal, my oncologist said the same as Jaimieh's - there have been no studies of TCH x 4 so she only does x6 even in early stages. When I was starting out, I wanted to do 4, but by the time I got to 4, I felt that as long as I had gone that far, I might as well finish it up and be sure that I had done everything possible to prevent a recurrence. I did have a hard time with Tx 5 and 6 - partly because I got a cold during Tx 5 which made it hard to keep hydrated. But now it is 5 months later and that is becoming a distant memory. I feel fine. The bit of neurapathy that I had in my fingertips has been gone for a couple of months, my red blood cell count is back up and I feel fine. My creatinine is still slightly elevated but it is close to normal - I'm on the bisphosphonate trial too and the drug I'm taking on that may be keeping it from dropping the last bit into the normal range. I'm now glad that I did all 6. The extra 6 weeks of being very uncomfortable was very little compared to worrying that I hadn't gone the full course.

Wanting to do x6 is very understandable.

orange1

In my case, my onc wanted me to do 4 cycles, but I insisted on 6 because of the lack of trials demonstrating 4 cycles are just as effective.  Like mmm5, I was terified of a recurrance (because Her2+ tumors are usually metastatic IF they recurr), I wanted the most effective treatment possible up front.

I happy with my decision to do 6 cycles instead of 4.  I was pretty worn out at the end of it, but I worked the whole way through (easy job with understanding co workers).  I do not have any lingering neuropathy.  My nails are not great, but who knows what they would be like if I stopped at 4?

I am a scientist by training, and is what really drove my decision is summarized in a saying us science nerds have:  In God we trust, all others must bring data.

Good luck with your decision.

Edited to ad:  I learned a lot from the cancer diagnosis, basically became a little wiser.  But I can't say I learned anything from chemo - I was just too tired to do much thinking.

07rescue

I also ended up doing 6X TCH, along with a bilat mastectomy and the balance of the year on Herceptin. The Chemo was awful, replete with bouts of kidney failure, and now after 7 months of weekly Herceptin I'm having signs of heart failure - my MUGA dropped from 67.8 down to 57, so I only have 2 more points to go before they will have to take me off it to give my heart a chance to recover. All this for a 9mm T1b N0M0. But I wanted to hit it with everything possible, because every single woman in my family has died from highly aggressive cancers in the HER2 family of afflictions. If 4 TCH would have been enough I will never know, but I am certain that we have done everything possible for this, so if I get mets it won't be because we spared any expense or trouble...

LoriR

I literally just finished up my chemo two days ago.  I did 4.  My four were fairly easy and have no real SE to complain of except - no hair of course -.When I talked to my onc about 4 vs. 6, he told me that the Herceptin is probably more important than the chemo for Her2 pos.  Is your C cytoxin or carboplatin?  Mine was cytoxin. I am ER/PR pos so I am not sure if that makes a difference??  In any case I don't know if I helped at all but just wanted to chime in.  Only time will tell if I made the right decision??????  Good luck with yours.  Your gut will guide you.

jenbal

Thanks, all, for your replies. I'm still waffling, but sent a long email to my doc yesterday with some questions and if->then possibilities for us to talk about on Wednesday, which is my next appointment. If I can ask for some more follow up from you all -- for those of you who did 6, what was especially tough about the last 2 treatments? Just cumulative effects, or did new SEs emerge? Nearing the end of #4 cycle, I'm feeling a lot of muscle weakness (not numb or tingling, just flabby) and fatigue, and I think I may be retaining water (feel kind of "squishy") -- all of which is new this cycle. Sound familiar?

Meant to add -- my "C" is Carboplatin.

orange1

Jenbal -

My "C" was also carboplatin. 

I had no new SEs.  The bad taste in my mouth hung around longer and became more pronounced after each treatment (excellent for weight loss!).  My nails continued to loosen - but none fell off, I became a little more fatigued, and I was still loosing eyebrows (was down to 4 hairs on one side).  My eyelashes stayed though.

I also had some numbness/neuropathy and definite muscle weakness.  These did not seem to get significantly worse with the final treatments and both are since fully recovered. 

Some things got better.  I finally quit gargling with that discusting nystatin suspension my onc wanted me to use pre-emptively.  Just got sick of it, so I stopped - without any ill effects.  I think gargling with that stuff was worse than any of my SEs!

Good luck with your decision. 

bluedasher

For me, the fatigue lasted longer in cycles 5 and 6.  I had a cold at the beginning of cycle 5 which may have contributed to that. (I don't think that was due to low WBC since my husband and DIL also had the cold which we may all have been exposed to by my granddaughter.)

I had nausea late in the cycle which was probably a reaction to Neupogen but may have been due to the Carboplatin and that was worse on the last cycle. The vomiting made me low on magnesium, which also probably contributed to the fatigue I had at the end. When they gave me a transfusion and IV magnesium 3 weeks after the last chemo (which was the first time they tested my magnesium level), the fatigue and nausea went away almost immediately. I felt much better by the next day. (Vomiting can cause low magnesium and low magnesium can cause nausea and vomiting. Isn't that lovely?) I wish they had tested my magnesium level earlier.

I didn't get any new symptoms the last two cycles except the last cycle I had the muscle weakness too. By 5 weeks after my last chemo, that was much better and in a few more weeks I was pretty much back to normal.

Firni

jenbal,  My oncotype score was pretty high and I did x6 taxotere and cytoxin.  5 and 6 were very hard for me.  I had no good days from day 4 of tx 4 until about a month after tx 6.  I was so tired I just slept much of the time.  I was so weak I could barely walk thru the house to get to the bathroom.  I wouldn't take a shower without DH in the house.   The Neulasta shots made me hurt.  My nails got bad (lost 2 toe nails), my skin got worse.  I got fat and not from eating.  I had neuropathy in my hands and feet and I had hand foot syndrome.  It was truly a B*tch.  BUT, now I'm 4 months past chemo.  I feel like my old self except for some tingling in my toes and a swollen left foot.  My gut, my heart and my head all told me I needed to do the last two.  You will know what to do too if you follow your gut.   Maybe your onc will let you start with the 4 and see how you're doing.  If all is well, you can always add the last two.

Edited to add:  My doctor feels the tingling and swelling will resolve and be fine.  I don't regret for a minute that I did all 6 regardless of how hard the last 2 were. 

Vegasmom

I will start the 6X - TCH tommorrow.  But wanted to tell you I asked my onco about 4 verses 6.  She said we can do that, but there is just no evedience that it has been proven to work.  And she said If I were doing it I would think why not 2 more just to be safe, whats 2 more?  It has been proven that 6 cycles work.  I guess I will just see how I feel, I can always stop at the 4.   Hope this helps.....Tanya

07rescue

That's a good question - what S/Es got worse from treatment 4 through 6? I kept wondering that myself while deciding to go ahead with the last two treatments. My neuropathy definitely got worse. I'm now two months post chemo and it still keeps me up at night, and can be quite painful. I didn't have any "good days" between the treatments for the last two rounds, and really couldn't wait until they were over. My nails hadn't been too bad up until number 4, after that they became very discolored and fragile, and I was not able to button a shirt or do many taks the way I used to. I definitely felt poisoned by the last chemo, There is no good way to describe the process, other than I am glad I got through it without any more serious emergencies, infections, etc.

I would do it again, despite the damages, just because of my family history of death by cancer. I didn't feel I had much of a choice. 

jenbal

Thanks again -- to all of you. I've finally decided -- barring some adverse findings in my blood tests tomorrow -- that I will continue at least with #5, see how that goes, and then maybe finish out the 6. Got a good reply from my email to onc suggesting that while what SEs I've had so far may get worse, new nasty SEs are unlikely. So, just gotta cowgirl up and do it! Will definitely be glad when it's over!

Firni

Good luck Jenbal.  I hope 5 and possibly 6 are easy as they can be to get thru.

jenbal

Hi all -- progress report here for anyone else wrestling with this question. Had #5 on the 29th. The day after was ok; by midday of day 2, I went to bed and hardly got up for the next three. Just flat out tired. Climbing one flight of stairs feels like a vertical 300 feet at treeline. And now -- just as energy is starting to come back a bit, I have a cold! Oh yes -- and toenails are going black. This might have started earlier, but I just saw it when redoing polish. Loverly. Hoo boy. Trying to keep up with water and exercise -- put out an S.O.S. to friends for a daily walk partner just to kick me into it, and that is helping. So far no neuropathy, though, so that's good. Started in on some extra Vitamin B6 and B12 and L-glutamine to help stave that off, so maybe that's helping. Will keep you posted. Thanks again for the encouragement! --Jenn

orange1

Jenbel

Glad to hear treatment 5 has not been too hard on you.  Hang in there! 

REKoz

This topic is close to my heart since I only had 4 tx and was not even offered 6. Due to pre existing neuropathy issues, I was able to get Abraxane rather then Taxotere. So, I'm not sure if that makes a difference since Abraxane is usually not given to early stagers. My protocol was unusual as well. I went every week (Abraxane, Carboplatin and Herceptin) for 3 weeks with one week off in between. I went with that schedule because the lighter doses (instead of one blast every 3) was more likely to keep me at work due to less se's.

I trust my Onc. implicitly and he has a stellar reputation also in the area of research. I guess my question here is to make me feel better . I never did have an Oncotype test done because chemo was a given as an HeR2 pos gal. Without that, I may have been on the fence. So my thought is that it is really the Herceptin and the Aromison (ER and PR 90%) rather then the chemo that is my real defense against reoccurance. Hoping that someone with lots of research knowledge might validate that so that I don't have to start worrying that I didn't have 6tx!!

Can anyone here make me feel a little better?

LoriR

REKoz

We have very similar dx - and treatments!  I was not offered 6 - My onc only talked about doing four.  I don't have any research but he too told me that the Herceptin is the real biggy when it comes to preventing the reoccurance.  I had Taxotere, Cytoxin and Herceptin X4 every three weeks - Next week will be my first Herceptin alone so I will get it until May 2010.  I don't know if I answered your concern but you did make me feel better about my treatment and I hope I did about yours.

Lori

jenbal

Final update for those following this thread or having the same 4x vs. 6x question -- Had #6 on August 17. Slaughtered by fatigue, which started a couple days after the tx and peaked about a week after. Just now starting to get some energy -- and hope that my life isn't over! -- back. Also have developed some edema in my lower legs and ankles. So not attractive for summer skirt wearing! Bottomline -- these last two cycles were definitely much harder and qualitatively different from the previous 4. However, as I recover and get past this and it all becomes a rearview memory, I expect I will be glad I soldiered up and completed the course. No second guessing! Had I known the fatigue would be so bad, I would have planned for more downtime, but of course everything about cancer treatment is so unpredictable. Had a post-chemo MUGA scan last week, and -- go figure -- my LVEF actually improved by 4 points! Very glad to have this over, very looking forward to getting my life back.

orange1

Jenbel - congrats on finishing.  The chemo will soon be a distant bad dream.