Peripheral Neuropathy

My oncologist was completely happy to stop at 11, most of the oncology nurses were happy with 9 or 10. I did all 12 only because I found a lump just before number 11. It was nothing of any concern (once it had been biopsied!) but rather consolidated the wish to do everything I could to avoid any recurrence. If the patient can live with the possibility of permanent effects (after seven years I am pretty sure mine are) then OK, but not knowing exactly what those would be is tricky. I don’t mind the fact that I really can’t run (messages to the brain that I am about to fall can be counteracted when I walk but not effectively if I run), can’t wear heels or emulate The Queen and stand still for hours, as I am still here and have no actual pain. Not being able to use my fingers effectively (typing, dressing etc) would be something else altogether. Making hard decisions is part of the process I am afraid. The views of the person on the receiving end are vitally important. 

I had four doses of Taxol (dose dense regime - fortnightly). My last dose was reduced by a small amount due to the PN having already started. In fact, PN started for me after the first dose of Taxol. I am 18 months post chemo and my feet are pretty fucked basically. I thought it was getting better and almost gone at one stage there - about a year ago and over Summer, they weren't too bad. They are pretty bad atm.........tingling all the time, hot, red, and generally yelling abuse at me.

She has had seven, and the MO is talking about stopping at nine. The agreement is that we will get to nine and reevaluate from there. I am a bit surprised that she hasnt suggested reduced dosage, for instance. More than that though, I am surprised that the symptoms seem mild to me, maybe moderate. Again, easy for me to say I know, but I am sure I've heard/read people talk about severe pain, curled up fingers in the mornings, as well as other non-pn symptoms like mouth sores. That hasnt been an issue for us - fingers crossed.
The MO has indicated that since she has had both Taxol and carboplatin she is happy with the cumulative amount. Feom my point of view, if she prescribed 12, well that's probably the amount she wants her to get, ideally.

How many treatments has she had @strongtogether ?  I don't know much about carboplatin but with taxol, the suggested regimen (12) is what most people can stand not the minimum needed because they don't really know what the minimum is.  Given this, they often stop it at 8 if the pn is getting concerning.  Another option (again, I can only talk about taxol) is possibly to have an extra week in between to see if the pn settles down a bit.  I think it's important to discuss it with the onc and find out the reasons and options.

I don’t know about carboplatin but PN from Taxol can continue to develop after treatment ends. Not always. Not necessarily to an extreme degree. But not certain. Most side effects do sort themselves out after treatment but not all. I had about six weeks of quite intense discomfort in my feet (heaven help anyone who stood on my feet in the tram!) but this discontinued. Nevertheless nearly seven years later I have very odd sensations in my feet (reduced feeling in some parts, heightened sensitivity in others). My oncologist was keen for me to stick it out but preferences vary and also change over time. Certainly in my case 85% of the recommended treatments (12) was considered as effective as the full dose (as far as anyone can tell). Always ask for a reason. Best wishes. 

Does CIPN feom Taxol/carboplatin get worse after you stop 5reatment?
The MO is talking about stopping Taxol/carboplatin early. I dont understand why. At the moment while she gets pins and needle sensations and has a weak grip, as well as some level of pain, it is not constant, debilitating or even severe. I understand that in 30-50% of cases symptoms lessen over the first year. I know it's easy to say this because they aren't my hands and feet, but it doesn't seem so bad that they would be pushing her to stop when this is a major component of the treatment. 
Am I missing something here?

I'm really affected by how good the shoe last is now and how cushioned the sole is.  I can wear flats and be in agony afterwards, low heels that I wore just about every day in the warmer months pre-BC and be in pain.  Asics sandshoes which have always been supportive on my feet, do nothing to help the pain brought on by walking.  But I bought a pair of Sandler Easy Steps that have a good last and cushioning with reasonably high heels on them (although we're talking work heels not 5 inch towers) and I wear them all day with no extra discomfort.  Mind you, I can't usually afford Sandler - it was only that they were out on extra special at Harbourtown that I was able to get them.  Even some heeled cheapies I got at Rivers are not too bad as they are cushioned.

I stood and walked in high heels for several hours on Friday night (a fundraiser for BCNA) and it took my feet two days to recover. My ankles are still cross with me... And I don't have PN. I can only imagine the pain you're in @JJ70. Hope they feel better soon. K xox

@jennyss...Winterbourne are awesome - such talented lads. Great music - their older and newer stuff alike!

Oh yes @arpie - the blankets and sheets!!