Vent about Permanent Neuropathy

My one regret is having the 4th taxotere treatment. My neuropathy is life changing and the MO said that no tests were ever done to see if 3 treatments were enough or 4 were necessary. I was sick every day day during treatment (hospitalized twice) and thought the numbness was from the swelling. It wasn't. I got a much reduced dose but that was still too much. You will have to make your own decision and live with whichever choice you make.

Sloan15, I did cut my chemo short due to advancing neuropathy; however, when you read this please bear in mind that although my DX line is very similar to yours that my chemo was NOT for BC. I did not even have to do chemo for my BC. I am wondering why they felt you needed it...are you under age 50 or something? I do think Oncotype testing should have be included in the decision making process.

In my experience, the short term, acute neuropathy symptoms did change (decrease a bit) between rounds of chemo, but regardless all cancer chemo is cumulative, building over time. Many who post here did not get their long term, chronic neuropathy until after their last round of chemo. The saying is that if you stop chemo once you have the onset of neuropathy, it might already be too late to reverse it.

I agree with Italychick that you have to make a decision that you can be comfortable with, no regrets. It appears that your chemo is being given to you strictly as "insurance" and I am not even sure why because it looks like radiation and an anti-hormonals would be of greater benefit given your slow-growing ER+/PR+ BC.

It might help for you to think of it this way: The three rounds of chemo which you have already done would have done a great deal of damage---percentage-wise--to any rapidly growing cancer in your body. The final round will offer more benefit, but only to any remaining, growing cancer cells, those not already killed off in the first three rounds, so obviously a lesser percentage, if any. The thing is, most chemo presumes that within the window of when we do our chemo rounds that any circulating cells will find a cite in which to grow, thereby making them vulnerable to the chemo agents. Any cells that remain circulating, in other words, are not in a growth phase, may have the potential to become metastatic at a future point. This is why there is NO GUARANTEE that you will not have a recurrence, even with chemo, even doing the full course.

My own personal reasoning was this: Given that my neuropathy was advancing up my legs and affecting my field of vision, I felt that in doing 10 out of 12 rounds of chemo (all for the sake of "?question mark cancer?") that I probably reduced my chances for mets a great deal. I felt that IF I had (or will have) a recurrence, that the two rounds that I skipped would probably not have been the lynch pin and that it would have happened even if I did do all 12 rounds. I have lived comfortably with that decision ever since.

BTW, I talked it over with everyone while I was deciding what to do and the responses ranged from those who thought I was daft not to hang in there to chemo completion to those who thought I was daft to have done any chemo in the first place. Do your best at informing yourself, so that your decision will be right for you. Good Luck either way.

The problem is that there is no test to state when enough is enough. It's still just a guess, no testing has been done to find out if 5 treatments is better than 4 or 4 is really better than 3. Medicine is still a big guessing ground. It seems like every week something that medicine "knows" is true is found out to be false. First butter is bad for you but now they say the transfats are even worse so eat the butter. Eggs don't really raise cholesterol. Is coffee bad for you or not? This last week a meta study came out and said taking calcium and vitamin D doesn't help with fractures unless you also exercise. Hard to do when you're waiting two years for a hip replacement (finally scheduled for the end of the month ). If you're strongly er/pr+ hormone therapy will do as much to halt mets as chemo does according to my MO.

You all have been really great, by the way. I really really appreciate your thoughts and advice.

Sloan15, I dropped out after 5 rounds - I could have forced the 6th round, but round 5 really messed me up. I agonized for awhile, then just pushed past it. I didn't even want to do chemo. But with negative receptors, the doctors put "spiders" in my head saying chemo is all you've got besides Herceptin. I don't believe round 6 would make the difference between my cancer becoming metastatic or not. Really, it is all a matter of what you are comfortable with, and you have to live with the body you have.

Given the Grade 1 status of your tumor (which I believe is super slow growing?) what was their rationale for chemo since it seems to target fast growing cancer cells the best?

The other thing I see is you have anti-hormonal drugs to use too. They are pretty powerful substances.

Sloan15, when my doctor stopped my chemo she got out some tools, one was a cold piece of metal she ran up and down my lower legs and feet, and then also had me close my eyes and tell her which direction she was bending my toes. With the cold piece of metal, she also ran it from my wrist to my fingertips and asked when I stopped feeling the cold temperature, which stopped at the tip of my fingers right past the last joint. On one of my feet, I couldn't tell which direction she was bending my toes in, so she said enough. Maybe not scientific, but it was good enough for her to stop chemo.

not on my left foot. And the toe next to the pinkie would get stuck in the drop down position and I would have to bend it up. All gone now, thankfully

Sloan - very unusual to have a high Ki67 while being Grade 1. You would have been a perfect candidate for Oncotype testing, though Ki67 proxies somewhat. I was grade 3, Oncotype 39, and Ki67 of 60% (They say over 12% is high). Do you have an actual percentage?? I know chemo has been shown to be most effective at Ki67 at 55% in one study I read. Taxol was definitely the cause of my neuropathy and I've only realized, years later, the horrible pain I got 2 days afterwards, was probably nerve damage happening. I had to take hydrocodone to manage it. By the second Taxol I was getting the burning and tingling, numbness too, but the numbness paled next to the other two symptoms. I had 4 dose dense treatments (after AC). Then I got 6 weeks of carboplatin because I was brca+. It also causes neuropathy, but after 5 treatments my MO offered that I could forgoe the last treatment, though it was "bonus" chemo as prescribed by the MO God at OHSU. I never regret skipping that last chemo given my lasting neuropathy, but I wanted to say that so many women in my March 2012 chemo group showed neuropathic symptoms that seemed to resolve rather quickly after chemo ended. In our group of about 25 or more women, it seemed like only two of us dwelled on it while the rest just commented. Also, I could never tell if my local MO was not concerned about me skipping that last chemo because the carboplatin after AC/T wasn't protocol or that a sixth treatment was just more safety factor rather than critical?

Edited to say I see you are Grade 2 and chemo did affect my memory! I believe my neuropathy as at its worst for a few months after Chemo finished. And yes, the worst after treatment then getting slightly better before the next chemo, but I don't ever remember thinking, oh good, my neuropathy will feel better the longer I get away from my chemo date, before getting to the next date. It was all bad in my mind and continued poorly, as I said, for months and months afterward. I remember saying, about 5 months after chemo, it was 6O% of its worst. That is how I would describe it to my MO... In percent of worst.

Sloan....lots of female breast cancer in my family too (no other types that I know of). I am the first one to be brca tested and only the second one in my generation to have BC. My female cousin (our mother's had BC) had cancer 2 years before me. After my positive brca2 test, she turned up brca negative! That was sort of a surprise (her brother was positive). How many in your family were brca tested? I've read, and I can make no sense of this at all, that non-brca women from a brca family have a higher rate of breast cancer than other non-brca families. I've also considered that my cousin might have gotten a false negative. She had her test done in Canada and I don't know a thing about the lab(s) they use.

".....and not everyone gets side effects that are life-altering. BUT if you have 2% chance of having the side effect, it is 100% for YOU."

My thoughts exactly, GirlPowerDebbie!!

BRCA neg. ladies with BRCA pos. families...consider this: Your BC might have some hereditary element, then again it might not. You may just be one of the unfortunate 1 in 8 women.

QuinnCat, do you have a link to the study you read? It sounds interesting even tho' there is still; a piece of the puzzle missing.

Dear sweet people,

I have been on this site all day. I do not have breast cancer. Mine is ovarian and fallopian and Mullein mix where I had 2 types of cancer cells in my ovaries. But whatever the origin of the cancer really doesn't matter at all. This THREAD matters, and the wonderful HUMAN BEINGS who contribute so honestly and sooo compassionately matter. I have learned more today than in the last 8 months. I have cried today from the empathy you all show so sweetly...from the way you share the most intimate info so freely...from your commitment to coming back here often to help the "next guy". I have taken notes on your great advice. I have learned all your names and have wondered what your next response will be. My search engine brought up page 27 and I read a few pages before and after that, and then felt I would be doing myself a disservice if I did not read every post. I am on page 5, so I have so much left to learn from you....so many more times to think "yes....yes...YES!!! That is EXACTLY how I feel!!"...so many more tears to cry and so much hope to be felt.

I just want to say THANK YOU. ThankyouThankyouThankyouThankyou! Every one of you has given me something - a treasured gift! Please don't feel sad if your name doesn't follow, especially since I have pages and pages left to read! I just want to give a special thank you to ktym for starting this post, and to Cinceerly who said the words way back on February 29, 2012 hat inspired me to stop lurking and join this group. Thank goodness for the internet and endless archives! I feel like I won the lottery...a room chock full of new friends! There are paragraphs and paragraphs that touch me. If any one of you ever feel you are not AMAZING, please remember this email. You are!!!

Hi Kaz-

We want to welcome you to our community here at BCO. We're glad you've found us, and hope you find the support you need!

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kaz27 This makes me so angry! I have an autoimmune neuropathy not from chemo. Neuropathy is the worst. I believe any and all possible side effects should be discussed before any treatment, including the anti hormones. We should have the right to make educated decisions about what goes in our body. Many of these SE can be worse than the disease itself. Have you tried Cymbalta for the neuropathy? Its an anti depressant that works on nerve pain. Good luck......

Chloesmom --how many round of TC did you have? I'm at 3 and think of not doing 4 because of the SE. I'm sorry you can't even enjoy a movie. I was supposed to do jury duty, and I knew I couldn't last comfortably a day sitting in there!

kaz--glad you're here. This group has been INVALUABLE to me!