I am on the ICON 8 Trial, testing if weekly treatment is better than 3 weekly treatment.
I have had 11 weekly Chemo treatments of Taxol/Carbo, (of !8 weeks) and have been experiencing a chance to sensations in my fingers and toes. In the last week I now have very painful ankles and a pain in my right buttock when i weight bear.
My GP said it could be the Sciatic nerve, suggesting nerve damage.
I have told the Oncologists about my hands and feet feeling tender and so far my treatment dose has remained the same. Tomorrow I have an appointment to see the Consultant Oncologist with the idea of reviewing the dose I am currently on.
Part of me doesn't want the dose reduced, but I do not want to end up with permanent nerve damage.
My symptoms are slowing me down a bit.
I am also having trouble sleeping.
Regards,
Amanda
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Amanda-Jane
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Sorry you are suffering with the nerve pain. I have just finished 18 weeks of weeky taxol. I have had and still have minimum nerve pain in hands and toes but did not need dose reduction. I was told it will probably reduce, which it is doing but slowly.
I know my oncologist said that reducing the dose would not be a great problem as I would still getv a larger dose overall than if I had had 3 weekly taxol. So maybe the same in your case. It is a difficult one for you I'm sure. Weighing one option against the other. The sciatic pain may not even be related,could be related to stress or muscular skeletal pain in your back. Am sure you get good advice.
Good luck for tomorrow
Love Sue x
Hi amanda,
when I was on taxol the oncolgist decided to take my off when my feet felt like I was walking on hot marbles. That was 3 years ago, (and I'v been on other chemo since), but I am still having problems with my hands and feet. i am now on tablets to try and help, but I'm not sure how much relief they are giving me.
I was taken off taxol completely after my first lot of chemo because of nerve damage in fingers & toes. Ihave recovered some feeling in my fingers but the balls of my feet & toes are still numb.
On this side of the channel I was told that if I suffered any pain in my hands and feet during chemo, they would withdraw or reduce the taxol immediately as it was a signal of possible long-term damage. I was lucky, but like you always dreaded this as I did'n't want to "chicken out" (as I saw it) of any treatment that might help! Ultimately, if the cure is worse than the desease then you have to persue another one, or at least do what you can do reduce the potential risks, imho.
Yes I had mine reduced at cycle 5 due to nerve damage and then on the last cycle (cycle 6) taxol was taken away altogether. Because my finger ends and toes had gone numb.
I also have this awfully painful Sciatic nerve type nerve pain in my left hip, leg knee and ankle. However, I did fall out of the back door in the summer and this is when these problems started so I can only assume this has something to do with the fall rather than the taxol.
A couple of weeks ago I experience excruciating pain in my right breast and under the arm, I have no explanation of why this falered up. This seems to have gone now but the hip pain is so severe I struggle to put my weight on it. Walking like an old women and everyone thinks its the heels, LOL!!!!!
I finished my chemo April last year and still in horrendous pain some days, was convinced the cancer was in my bones at one point but my oncologist put my mind at rest since my CA125 is a 9 and still going down. + she said that if it had gone into the bones I wouldn`t have pain here and there and somewhere else. I think my hands are improoving now, it took about 6 months before I was able to feel my finger tips again.
Actually, I was more worried about lowering the dose than I was about permanent nerve damage, Nerve damage doesn`t KILL!!!!!
However, my oncologist also reasurred me that lowering the dose and taking taxol away on the last cycle would not make a difference to my prognosis which is good aparaently.
To be honest with you I don`t think I could have tolerated 18 weeks of on going chemo. 3 weekly cycles made me very poorly, I was bedridden for most of that time, just picked up and off we`d go again for the next one. I can`t tell you how happy I was to finish it. You are very brave ladies on this trial.
Having each other to chat to on here is a God send, its so good to compare, it combatts the isolation, we can soon drive ourselves insane with worry, its a lonely business when your family are out at work alll day and you are left in thought. Too much thinking NOT good, I do try to keep buisy but when the CFS crushes me its veeeery difficult.
Hi everyone and thank you so much for your valued comments.
My Oncologist decided to give me a week off my treatment to give my feet a chance to recover.
Next week is the start of Cycle 5 and my dose will be reviewed them.
As I am on weekly treatment the overall amount of medicine given is more than on 3 weekly treatment, so hopefully missing a week and reducing the dose will mean I have still had enough medicine to rid me of this horrible disease.
My CA125 has dropped from 42 pre my 2 operations and is currently down to 12.
When I had my 2nd operation,( a full hysterectomy to determine the stage of my cancer), it hadn't spread thankfully and the diagnosis was Stage 2.
Feeling very blessed that if I hadn't been on a study for Family History which was checking my CA125 since 2004, I would have had no idea I had OC.
I have also had the genetic test to see if I have the faulty gene. Get the results mid February. I have 4 children aged 21, 19, 13 and 5, so if I have the gene, they can decide whether they would like to find out if they have the gene.
I have the faulty braca one gene I got my results Christmas week. I will be talking about double mastectomy with the genetics team next month. I had no idea I would be at risk of BC so that was a bit of a shock.
My daughters are 30 and 27 they are being seen by the genetics counsellor in March to talk through the pros and cons of testing etc.
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Feeling desperate. Weekly Taxol to start as current chemo not working. Has anybody had any success? 
Treatment question
ICON trial
Back to my oncologist this afternoon to hear the result of my scan - anyone on weekly taxol? 
