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Sister's avatar
Sister
Member
7 years ago

Paclitaxol and Peripheral Neuropathy

I had an interesting discussion with my onc, yesterday.  Now, he's a gently spoken and very considered man and I've been told by other professionals that he's not one for pretence. He may have talked about this at the first consultation but I honestly have little recollection of the nuts and bolts of that one but I have been getting more anxious about the peripheral neuropathy and whether I'll be able to finish treatment.  I went into chemo with the advice that it was believed that surgery had gotten the cancer and that chemo was to mop up, so I would have 4 x 3 weekly AC and 12 x 1 weekly Paclitaxol.  The neuropathy started around Week 6 or 7 of the taxol, very mildly.  At that appointment, I saw the Registrar and she said that we would try to get me to No. 9 as that was the most important landmark.  At the time, I accepted it as she said without question but I have still been anxious as the neuropathy has gradually asserted itself. 

Well, long story but getting to the point.  Going in for No. 11 yesterday, I asked the onc what the deal was.  If chemo was an added insurance, then what was the significance of either 9 or 12 (or any other number)?  His answer was that they just don't know - the studies have been about 12 dose treatment regimens and some of those people in the studies will not have been able to reach the full amount. What they do know is that the chemo is very effective and that most people can tolerate 12 but I think he said that more than that tends to be problematic.  Some people show very early on that they are too sensitive to the drug and have to be taken off.  With a number of people, the effects of nerve damage are considered to be too debilitating towards the end of the treatment meaning that it is considered not worth the risk to continue. 

Now, please understand that this is me paraphrasing my doctor not quoting him so there may be some thing in what I've said that is slightly wrong.  If this is a concern for you, speak to your own doctor.  What this has left me with is less of a worry if he pulls the plug on the last treatment which is still very possible.  I would still prefer to do the whole thing but I no longer feel it is a war between beating the cancer and permanent nerve damage.
  • @Sister quite interesting - I wondered how they picked that number too. @kmakm told me that with the TC chemo after 4 cycles it gets too hard on the heart. Seems like they might choose the upmost figure the human body can handle. How is your neuropathy going. I got some at the end of my chemo and I have just noticed in the last week it seems to have improved thank god. Fingers crossed the same for u xox
  • With AC I believe that you can only ever have 6 doses maximum and that's why they start with 4, keeping 2 in reserve for future issues.  At this stage, mine is mostly in my feet and still comes and goes in intensity but gradually creeping up - so far the maximum is just a lack of sensitivity in toes and balls of feet but tingling in arches but each week claims a little more.  The doc will decide at next week's appointment whether to go ahead with the last chemo.  I'm glad yours is improving - to get these sort of side effects from treatment is just a slap in the face, isn't it?
  • My oncologist said much the same. There is a natural preference to give the maximum you can take (within reason of course!) as that is likely to be most effective but the impact on an individual can vary. My breast cancer nurses felt that 80% of the prescribed dose may in many cases prove to be as effective as the full complement. It's not a clear area. Like taking letrozole, the stats indicate that 10 years may be better than 5 but not if it's cumulative - don't know if your chances slowly build or if there's a sudden peak in year 8! 
  • @sister I had the exact same treatment that you are about to finish. My feet and hands did start to tingle after about no 8 of Taxol. But thankfully I never got the bad finger nails and toes. When asked how my hands and feet were going by the Onc I said fine the thought of not finishing the treatment scared me. Now I have Neuropathy in my feet. Its manageable. My feet do feel cold all the time. Even in the heat of Summer I was wearing slippers round the house. Made the kids laugh.

    Good luck for Number 12 next week.


    Jan xxxx

  • @Sister I have five Paclitaxol to go. Peripheral neuropathy has been gradually getting worse. On Monday my white cells and neutrophils were very low (though not low enough to cancel chemo that day), and the oncologist said she's concerned about that, and my increasing fatigue (it was really bad last week), and the peripheral neuropathy (in case it becomes permanent). She raised the possibility of having a break from chemo and I reacted strongly. I said I want to push on. I can tolerate it, I said. She said the issue is if I become so weak it would be dangerous. So we'll see what happens next week - they may consider giving me a "booster" ???. A friend who is 2.5 years on said she was in the same situation at about the same stage of Paclitaxol and had four blood transfusions and felt much better after each one. So maybe that's what the oncologist is thinking of as a booster - or something else. So next Monday will be key.
    I HATE the thought of having a break from chemo - for fear that it may reduce the effectiveness of the treatment, for the weird idea that I "should" be strong enough to just keep going and not give up, and because I just want to get it over with and get on to radiation and be done with all the treatment.
    I don't like the idea of having permanent neuropathy; I guess I'd learn to live with it. My fingers tingle in a very uncomfortable way when I type. I'm finding it hard to believe that I'll ever feel "normal" again. It seems there'll always be some physical remnants of this whole deal - maybe very significant ones.
    The tingling feet cause problems going to sleep and disturbs my sleep and the skin from arch to toes feels as if it's stretched tight. Someone mentioned warm foot baths; sometimes that helps a bit. Moisturising is a problem for me because I had an only partially successful knee replacement 2.5 years ago and have very little bend in left knee so I can't reach my left foot well enough to rub cream in properly. My fingers are constantly numb and/or tingling. My daughter has suggested that for safety I should stop cooking (I cut my finger last week). I'm taking that advice and have had a Coles delivery of lots of frozen ready meals. Friends who frequently deliver home-made portions will also continue to do so.
    Oddly, I've had more nausea the past couple of weeks (about day 3) than I had on AC.
    The one bright spot in this past few days, with worrying about all this, has been watching online live stream of the parliamentary commission of inquiry into the political scandal in France - at one stage I was so riveted I didn't think about cancer for three hours! A French political crisis = my mental health therapy. 
  • @Flaneuse I was really anxious about the idea of stopping short, too. In the end, I didn't have to but I decided that I would listen to what my onc told me and after he said that no-one knows if it's important to get to 12, I did feel much better about the possibility.  I have spoken to other women who have had a week off when symptoms got too bad and they say it helps.  The last thing you want is to push it into a permanent disability - that's what decided me.
  • @Sister Thanks for those thoughts - particularly your last comment. I shall listen. Fran
  • I am nearly six years on and still have problems with my feet. It's probably for life. It's not the end of the world but don't take the possible impact too lightly. A break may help. There is also some evidence that 80% of the prescribed dose may also be as effective as the full dose. I soldiered on and did all 12 treatments and I don't regret it but if you are advised by your medical experts to another course of action, I would take that seriously. Best wishes. 
  • I had to stop after 3 of 4 rounds of AC, my decision as it was making me bed bound for days. My oncologist was fine about it. I'm now about to have the last of 12 Paclitaxel and the side effects have been cumulative but not as bad as AC - sore fingers and toes but no peripheral neuropathy. If they had been I would have had a frank discussion with my oncologist about how long to continue!