Vent about Permanent Neuropathy
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Sloan15, Never say never, but I am 99.9% sure your rads will not worsen the CIPN. Rads has it's own SEs, and you can count on getting at least some of them. Good to join the thread that pops up for the time period that you will have radiation. Good to compare notes with others as you go through it. If you are wanting a preview, read any thread from an earlier time period.
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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.
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Italychick - I should have changed it to Grade 2. The biopsy said grade 1 when I came on to this site, but the pathology after surgery said grade 2. Also, my ki67 was high, but so were my er and pr so one doc said meds would be enough. That is why I'm really considering not doing #4. (Still pins and needles and burning 6 days after #3). I see the NP tomorrow, but I'm going to schedule with the doc to see what he says about not doing #4.
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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.
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Could you feel your toes?
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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
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I don't think radiation affects neuropathy. It affects your lymph system, lungs, skin, ribs, arm mobility and maybe your heart. I got very fatigued and had some skin damage but healed quickly without scars. I also have some lung fibrosis but it doesn't bother me at all, just showed up on the PET scan.
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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.
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Quinncat - yes, grade 2. (I should change that when I'm not on a phone. Sorry for the confusion). I'm at ki67 30%. Everything was pretty good except that and a huge family history of cancer, but not brca pos. My doc said there might be some other genetic marker we don't know about yet because all the cancers were quasi-related (breast, prostate, ovarian), so thought 4TC might give me a little more insurance (3%). I think at the time when I was freaked out about my dx, I wanted every % I can get. Now, I need to think about QOL.
Regarding having my 4th treatment, the NP wants me to make decisions based on information not reaction to the SE. Sounds good, but it will have to be pretty compelling. I have an appt to see the MO next week.
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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.
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QuinnCat - I am also a non-brca member of a brca family. My oldest sister was diagnosed with BC when she was 36. Her 2nd daughter was also diagnosed at 36 (we lost her after 2 years). My sister's oldest daughter is now struggling with ovarian cancer. There was a nasty strain of cancer that killed a mother and all her daughters, from my dad's side of the family, so we are pretty sure where it came from.
My sister and her girls were all tested, and 2 of the 3 are positive. The youngest sister is negative, like me. The oldest daughter of the niece with ovarian cancer is also positive; her younger sister has not been tested yet.
I was diagnosed at 53. Brca negative all over the place. They ran the first test to see if I had the same gene mutation as the rest of my family, and found nothing. They did 2 other tests looking for variations of mutations, and also they tested each gene separately. Still nothing. Didn't expect that. It sure didn't keep me from getting cancer.
Re the neuropathy; mine did not present until about a month after my last chemo, which was 3 years ago. My oncologist agreed with me that it was the Taxotere that caused the neuropathy. They even have a term for it! CIPN - chemo-induced peripheral neuropathy. At least it is now acknowledged. Gabapentin has helped. On top of the neuropathy my right foot also developed plantar fasciitis which exacerbates the cramping and foot pain. I had some relief from a series of acupunture and chiropractic. What I hate most about it is my loss of balance, and the inability to walk any distance at all. Oh, and a life sentence of sturdy shoes - no heels, even 2" heels, for me. Wah. I miss my boots, especially as we go into winter!
You know, when you are diagnosed and they start telling you about chemo, they really gloss over the side effects. I understand they don't want to scare you, 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.
Carry on, ladies! Stay strong!
Debbie
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".....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!!
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BRCA neg. ladies with BRCA pos. families...consider this: Your BC might or have some hereditary element, then again it might not. You may just be one of the unfortunate 1 in 8 women.
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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.
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Also, for those who are brca positive, who knows if their BC was actually the result of the good brca gene failing. The doctors just assume that (and in my case, threw an additional 6 weeks of chemo at me because "it works well on brca cancers," exacerbating my neuropathy).
Thanks for your story GirlPower. So sad. Too young to die. I have found out from a scientist at Myriad that my particular variant of the mutation is only partially hobbled (it half works), so our family shows a pattern of breast cancer after age 50. Even my cousin who is non-brca was in her 50's. My Aunt (presumably brca+) got BC for the first time at age 80, then again at 85. She is still alive, though had kidney cancer after her second BC. Not fair.
Yes..taxotere, taxol....I hate it. It was worse than the Red Devil for me. I've even discovered a website called "Taxotears" about all the crap it causes - neuropathy, permanent hair loss..... I got a bit of both.
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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!!!
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Big shout out too to Linda-n-3. Your honesty is very refreshing. Your anger on July 11, 2012 is my anger today. I don't get angry easily. New symptoms...new emotions! I found myself whispering in such angry tones and with tears streaming to my husband a few days ago in a restaurant. I am so angry with my oncologist for not telling me about neuropathy. And I am angrier more that after telling him I had it and it was getting much worse, his response was something on the order of "Just tell me I can do that last chemo treatment"...which I did...although if he had ever once mentioned that neuropathy was not curable, I think I would have had second thoughts.
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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!
The Mods
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Neuropathy is worse. It is now 6 months PFC. We went to a show last night and I could hardly walk the block to the parking lot. Had to hold DHs hand. All the while at the theater I got big electric jolts in my foot and kept flinching. Pulled off my shoe as it hurt to have it on over the top of my foot. It's better this morning. Yesterday I was able to walk the dog 4 blocks. This hit or miss stuff is so unpredictable. The doc wanted to order gabapentin,, but I had a bad reaction to it once in the past for a different issue. She ordered some compounded cream with pain killers in it. Of course insurance won't pay for it and a tube is $100. I will post next week to report if it works.
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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......
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dtad, Thanks! Yes, I agree. There should be full disclosure of all possible side effects. And I have tried Cymbalta in the past and had bad SE's. My doctor wanted me to take gabapentin, but just reading the list of SE's on that one makes me anxious. I am taking B12 and will be going to a therapist for help with my balance. I will probably try acupuncture for my feet and hands, but prefer to wait until after my lymphedema therapy is over.
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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!
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I got exempted from jury duty when doing rads,
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Proudtospin - Tell me how to get exempted from Jury duty. Mine is coming up 19th October and I know I can't handle getting to the bus station, going downtown on a bus, finding my way to the jury building.....and sitting all day with my feet on fire nerve pain down spine, arms and legs and joints aching from Tamoxifen. I have already asked for an extension thinking I would feel better further down the line but not so. I have always done the civic duty thing but this year it's too much for them to ask of me.......
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Blownaway, you can not lie and in my county I went to court on the day required. The judge asked if anyone had a reason not to be able to serve, I went up to his desk and told him I was in the midst of radiation. I was excused and sent home
good luck, I have served several times previously and in dif states so your state may be dif, than mine
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Had 4 rounds of TC. Didn't get any SEs until a week or two after the final one. Toes get stuck curled up and I have to pull on them to straighten It's the electric jolts that are the biggest issue
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Welcome kaz27 - what a gracious post you have made. I just recently dropped by and will probably be absent soon, but I will never forget your post! Did you name yourself after "page 27?" I have to know!
Elimar....just saw your question about "the study" I mentioned. I assume the one I mentioned about 55% Ki67 having the best response to chemo? Sadly, I do not have it in my links (I might be 2 computer iterations later and my bookmarks don't seem to be very comprehensive), but I remember that one distinctly since at onco 39, grade 3, ki67 60%, I was looking for any good news I could find!
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Hi QuinnCat, The number 27 pops up a lot in my life, and something nice or exciting seems to happen right after it does...like being the first page number I first see on a website forum and then finding out it's chock full of nice people with tons of info and great advice!
Everyone,
I have an observation and wonder if anyone else has experienced this. I have to wear tight bandages on my legs about 4 days a week for lymphedema. When they are on, I still feel the neuropathy in my feet, but it seems subdued. When the bandages are off, the neuropathy pain is much worse and the lightning strikes are much more frequent. I wonder if applying pressure isn't some form of relief we can take advantage of? If anyone else out there wears compression stockings or gloves, I'd be interested in knowing if your pain is reduced when you do.
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I also have a question for those of you taking B6 and B12....how much and how often do you take it, please?
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Hi. Can I please whine here, because I am so scared....
I'm 59, right mastectomy and 9 axillary nodes dug out Aug 20 2015 and started chemo every three weeks Sept 10. I've had two doses of Taxotere so far, scheduled for my third 22.10., after which I get switched to cytoxan-epirubicin-5-fluorouracil for three doses. I already have old chronic pain and variable numbness in my left arm/hand from nerve root compression in my neck. Before BC, thanks to my Pain Clinic doc, pain was mostly under bearable control, and numbness not much of a bother, because I am extremely right-handed and just ignored my left hand.
About 2 weeks after my first Taxotere dose all fingertips became red, very sore, slightly swollen, like they had been "boiled", and I started losing touch sensation. I started vitamins B6 and 12 two weeks ago (after reading in these forums it may help neuropathy). This time fingertip pain and numbeness started worsening after only a few days, and yesterday my toes started tingling. I have also developed worsening lymfedema in my right arm a couple weeks ago, OTC sleeve is too tight and glove is too loose.
I am scared to death of losing the ability to take care of myself. I have adequate meds for the pains, but the added numbness and the edema make everything very dificult.
Is the numbness permanent?
My oncologist said the "brain fog" I'm struggling with is an expected side effect of Taxotere, and "should improve over a few months after the last dose". But she wouldn't answer when I asked about the finger numbness, whether that will go away. Pain has been a constant companion since 2005, have pretty much learned to live with that, but this added numbness is difficult and scary.
In attempts to find meds for my chronic nerve damage pains, I have been through Lyrica, Cymbalta, and a slew of other drugs that either provoke constant headaches, or hives, or intolerable dizziness in addition to simply not working for pain.
I would welcome any practical advice or any comments from you brave women.
Thank you for listening
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