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Macca1961's avatar
Macca1961
Member
8 years ago

Treatment

Hi all,( first timer) 
Quick short history: 
I was diagnosed with BC in early Aug 2017(lobuler, already in nodes, aggressive, hormone responsive) had mastectomy end of Aug and started AC in Oct. Completed my round of AC x 4 in Dec. No real problems. 
Had a little rest then started Paclitaxel in Jan 2018. I have had 3 of weekly my 12 rounds of my treatment has stopped due to extreme tingling and pin/ needles in my hands and feet. Visit oncology doc today and have been told that I probably won’t continue this treatment due to the serverity of the nerve damage that this can cause. He explained that continuing could damage the nerves to the point I would be quite unable to walk etc. Have to say I was mildly upset in hearing this, is an understatement. Been teary all day. Seems I am very sensitive to Paclitaxel. 
He explained also that a lot of women don’t get past 8 treatments as that is when the nerves start playing up.
The Doctor is running tests and we go back to see him next Friday. 
I still have to do radiation ( which the doctor is currently trying to get started earlier) and hormone inhibiter treatment as well.
Has anyone on here stopped Paclitaxel before the 8th round especially looking for anyone who has stopped after 3 or 4 weekly treatments? Really need to talk to someone, very very confused and slightly upset, would like to know how they handled being told “you are stopping treatment after being told you needed it to survive”?

5 Replies

  • Thanks @primek
    Hi @Macca1961 I had a severe reaction to Paclitaxel after my 6th dose I looked like I had severe parkinson's my kids called me jumping jackson...... 

    I had severe reaction to TAC so they changed me to AC only coped with it on 1/2 strength then we started 
    Paclitaxel got to 6th dose and I sounded and looked back had no feeling in hands,feet, mouth, vagina, slurred speech and So we stopped Paclitaxel  they gave me 2 weeks off to see how my body recovered.... I went in determined to have the Paclitaxel  at half strength but my Onco said he didnt want to kill me. 
    They started me of FEC I couldn't tolerate it .... we ended up on 1/4 strength of it...
    I was very upset and thought OMG I am going to die as I cant have the chemo they prescribed..... I am here alive and NED (no evidence of disease) over 5 years later 
  • @SoldierCrab I bet you can share your experience since they swapped your chemo over. 
  • Hi and Welcome. 
    Whilst I completed taxol I had to stop my targeted therapy early as I had heart failure...twice from it. I was devastated. They said...no point saving  you from cancer and you dying from heart failure. They honestly do what's best for the individual and yes if issues after 3...you could end up with horrendous permanent side  effects. But I totally get being frightened. Talk through those fears and if there  is anything else you should be having instead. Kath x
  • I know it's disappointing but your oncologist is correct, stopping before 12 is not that unusual and you are still likely to benefit from the treatment you have had to date. I nearly stopped Taxol at round 10. My fingers weren't bad, a bit of numbness at the tips but my feet managed to be both numb in large patches, including the sole and heel and very painful in places, particularly the toes. I did worry about being able to walk and I would have stopped but finding a lump under my right arm (panic, biopsy, all clear - non malignant and unrelated) jolted me into deciding to stay to dose 12. Just in case. I do still have residual damage and after 5 years I think I always will. It doesn't affect much, my feet feel a bit odd (most days like wearing 2 pairs of socks) and any plan to take up running won't fly! But if your oncologist is already concerned, take heed. Peripheral neuropathy doesn't always start reversing when you stop the treatment and he will be aware of that. You still have two more types of treatment in your armoury. To date chemo is the best treatment for many types of cancer but never forget it's a bit like taking a sledgehammer to a walnut - not much room for subtlety or sensitivity. See how your tests go, talk again with your oncologist but have faith in your team. Very best wishes.
  • Hi, @Macca1961. I haven't had that experience, but wanted to welcome you to the site.
    I'm sure you're team is thinking of what is best for you, on balance. If you're already getting extreme tingling, and pins and needles I can understand them being concerned as that tends to be cumulative,  so would continue to worsen through treatment , and if it got bad enough, it may not reverse after treatment finishes. 
    Having said all that. Nothing is certain yet. Wait til you go back on Friday, and be led by your team. 
    Take care, 
    Lyn