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kamada's avatar
kamada
Member
6 years ago

Decision time re continuing Paclitaxel due to peripheral neuropathy - help needed

I have started to have signs of PN on soles of feet after 4 of 9 planned weekly Paclitaxel. Onc has left it to me to decide when to pull the pin. Symptoms are mild atm I think (numbness on soles, slightly tender on rough surfaces, discomfort after 3/4 of my usual 40min walk) but I have no idea how quickly they will progress from this to severe and very long lasting ones like some of you describe in other threads. I am terrified of becoming badly incapacitated after all the effort I have put into exercise and gym to keep mobility, balance and strength as I grow older. Time is so limited to access expert advice between  weekly treatments and Christmas and I am scared that even one more dose may tip me over the edge. Is there anyone who was in a similar situation that can perhaps give me some concrete idea of the timing of the progression of their PN from week to week. The onc has said if I say this is all I am prepared to live with for 12 months he will delay the next treatment and see if there is any improvement. If there is he will try one more because it has shown that improvement is possible. If no improvement I will then have to go onto another kind of chemo that takes longer and is more involved (and I guess another swag of side effects šŸ™„). He says my prognosis would not be affected. Any information will be much appreciated as only a few days before next chemo. šŸ™ Thank you! 
  • Iā€™ll 2nd @Afraser on the vitamin B12. It really, really helped!
  • Its easy to do too, just latex gloves and a container of ice!!!
  • I strongly recommend cold therapy to anyone undergoing Paclitaxel treatment. Anecdotal evidence from patients around the world show that it often leads to better outcomes than going untreated. Prevention is better than cure when it comes to Peripheral Neuropathy. 
    Good luck with your journey @kamada I would suggest it is never too late to try cold therapy. I had symptoms one week when I didn't keep my fingers cold enough, but continued cold in later treatments kept my long term issues minor.
  •  Oh dear I feel like an idiot! I thought I had responded to your replies ages ago @"Beryl C." @primek @strongtogether @Nefertari and @Afraser but no, it stayed in Drafts! My brain goes into neutral sometimes. So sorry I didn't mean to be rude. Thank you all for replying. Since my original post the PN has waxed and waned without any drastic escalation in severity. Talked with chemo nurse and confirmed PN is mild atm and that the usual progression is slow from week to week so I continued without a break and have now completed six of the planned nine weekly treatments. So hoping I can get through the last three! @Afraser your situation is what I am trying to avoid and luckily my symptoms donā€™t include pain so far just mild numbness and sensations. It is interesting about Vit b because I have found out from a qualified source that folate (b6) has a big role in nerve repair. B12 apparently also has to be in balance. I have an appt with her this week so will be getting all the info I can about this.  @"Beryl C." You are right about how unique we are. I guess we use otherā€™s experiences to try to gauge the median and then hope like hell we arenā€™t at the extreme end of the range where it sounds like you ended up you poor thing. I really feel for you. @strongtogether I suspected it was too late to start ice packs so hope I escape. @primek it is truly a balancing act and I will be proceeding very carefully.  @Nefertari I am hoping I avoid your experience as well but it is really reassuring to hear that you were able to recover relatively quickly to almost normal. So my fingers are crossed! I hope you all were able to enjoy a lovely Christmas celebration and that 2020 will be a good year for you and your loved ones xx
  • I got PN after the sixth paclitaxel and boy it came on so suddenly and severly, I had nothing on the first five. 
    My oncologist made the decision to stop the treatment for 2 weeks and "see how I went".  He though we may try a different chemo if it progressed.  Unfortunately the PN got worse over the next couple of weeks, both of my feet were completely numb up to the ankles and also both hands to the wrists, the pain was also pretty bad.
    My scans showed that the chemo (4 x AC and 6 Paclitaxol) was very effective and only dead cells were left. So they did the surgery and after that I had 6 weeks of rads.
    It is seven months since I stopped chemo and my hands are almost normal, just the finger nails and tips are numb and have some odd sensations but they aren't painful anymore :) 
    My feet are much slower in recovering.  I still have weird sensations in my toes and pain. I guess I can live with this as it is better than it was.
    At first I was really disappointed to stop the chemo but now I am glad.  Walking was hard and I often tripped over and the pain was intense in both hands and feet.  I couldn't drive for nearly two months and everyday things like doing up buttons, holding things or picking up stuff was really hard.
    Good luck, see what they suggest and I am sure you will know when to pull the pin.
  • I would think if already have numb feet after 4 doses it might not be worth the risk if something else works. The reality is you hopefully have a long life after treatment and not being able to feel your feet could have a significant impact on your quality of life. I just had affected toes the last 3 sessions (I had 12) but it took over 6 months to resolve and I struggled with pain in cold weather. My friend who didn't tell the oncologist about her side effects has significant issues. She trips often and doesn't realise she has sustained an injury to her feet as she can't feel it. She withheld info as was scared it would be stopped.
  •  Hi there @kamada
    I would say - please try ice treatment for your hands and feet during the infusion. I know that nurses and oncologists tend to poopoo it, but you've got nothing to lose by trying. Some people swear by it.
     Other than that, has the oncologist talked about reducing the dose? It can be given in lower doses. Might be worth a try!
  • kamada I suspect peripheral neuropathy is one of those 'we are all unique' conditions, ie, what works for one may not work for anyone else. I have experienced painful feet for five years - only when weight bearing, ie, standing or walking. I have been on Exemestane and Herceptin for eight years, never on Chemo. I've seen a Pain Dr twice and attended a two day pain management clinic. I have tried about ten prescription drugs including opioids but none have made any difference likewise with every vitamin, creams, oils, massage, acupuncture, Tens machine etc etc. - I do have a codein prescription as it takes the 'edge' off the pain if need be, eg, family birthday or Xmas function. I have had to let go of the gym, tai-chi, yoga, long walks and my only exercise is swimming. You might ask your GP for celebrex - it did ease my pain for the first couple of years. Good to hear that your Onc has heard you and made some suggestions and maybe a treatment delay is your only option. Not an easy decision, I would weigh the possible new side effects against your current situation in a process of testing your reactions and tolerance. 
  • Oh itā€™s a thorough pain - in the feet and in the neck. I had the same fear - here I am trying to get rid of cancer and I am going to end up in a wheelchair!! First off, I didnā€™t - end up in a wheelchair, I mean. And I am now seven years with no evidence of disease. I donā€™t know how much the latter is due to Taxol. My PN was, I think, fairly severe - loss of sensation in some parts, bizarre sensations in others but the major problem was pain, particularly in my toes. Anyone stood on my toes and I screamed! Not good in trams! My oncologist was keen for me to complete the course, was happy with eleven doses and would have settled for ten. Discovering a lump under my other arm (benign, totally unrelated) made me decide that I wanted to do all if I could. I started taking Vitamin B and the deterioration halted. It may have done so without the Vitamin B, no way of knowing. The pain ended. Seven years on I still have funny feet. No pain but sensations are simply garbled. Sometimes I feel like Iā€™m walking on hard, ridged sand, sometimes like on a mattress, sometimes pretty normal. At the speed of a glacier, they are still improving but there is an impact. I go to the gym/Pilates/yoga/etc but I donā€™t run - I can mentally counteract the odd sensations at a walking speed but not faster! I am 74 and have never been a runner so itā€™s no big deal. Most symptoms do abate after treatment stops but it can take some time and may vary depending on severity. My PN came on fast and hard, so taking a week or so off sounds like a good idea, if only to reassure you that it will improve when you stop. If another chemo is considered the better way, then worth checking side effects too! I donā€™t want to sound like a Pollyanna, but if anyone had sat me down and talked about side effects I actually got in detail (as distinct from sound information about what I might get, our survival instinct is good at saying it wonā€™t happen to us!)  Iā€™d probably have had serious doubts about treatment. So I am sort of glad I didnā€™t - because I am here, I am well, I live a busy and full, normal life. And I just might not have had that if I had been scared off. Best wishes whatever you decide.