This is not the news I was looking for

Less than one minute read time.

So, this is what happened at the hospital yesterday:

I'm currently on a regimen of three weeks of Paclitaxel, followed by a week off. One side-effect of Taxel is neuropathy - numbness/pins and needles/pain in the fingers and toes. I've had very bad pains in my fingers for the past couple of weeks. I assumed that the consultant would accordingly change my drug to one that wouldn't have this side-effect. However, she didn't. From what she said, there aren't that many drugs options available. I was on Carboplatin before, but she says we can't go back on that. The only other possibility she mentioned is an oral chemo, and she didn't sound very certain that would be effective. So I'm having an extra week off chemo, and she's prescribed some vitamin B complex pills that might help with the neuropathy.

In other words, if I want to continue cancer treatment, which I do, I'll have to put up with the side-effects of Taxel. Which might involve permanent damage to my fingers and/or toes.

None of which I find very reassuring.

Kind of sick of all this, to be honest. As who, I am sure, is not.

Anonymous
  • FormerMember
    FormerMember

    Hi Hils,

    Sounds like you need an extra year off that particular chemo, those side-effects would drive a saint to drink. Or hemp, as I believe someone suggested. I think Linda Black reckons it's worth a try, as well as cannabis. She posted somewhere about pot's medicinal properties, especially pain relief. The conspiracy theory is that US health authorities have known about the therapeutic value of pot for years but have suppressed the research findings in deference to the drugs companies. Sounds quite plausible to me. If it would help, I'd sub you the wherewithal. Seriously. Let me know. I've saved a lot by not smoking!

    Vitamin B is supposed to be brilliant. Someone who had chemo with me was given injections of it. I do hope it works for you - and selfishly, I don't want your typing fingers to be out of action.

    Of course you're sick of it. If i had the power to grant a wish ...

    With love and cautious hugs,

    Twirly xxx

  • FormerMember
    FormerMember

    Hi Hils,

    It's enough having to put up with rude nurses and now this. I hope the vitamin B works and above all that the Taxel kicks cancer's bottom good and proper.

    Best Welsh cwtches, which are always gentle,

    Odin xxx

    PS. I'm a fine god that I can't do more than cwtch you!

  • FormerMember
    FormerMember

    You're an excellent god, Odin dear, just a trifle unfashionable in this decadent day and age. Gods do need a bit of a power source to draw on. Anyway, cwtches are always welcome. Whatever they are.

    My fingers definitely feel better today than they did yesterday, and they felt better yesterday than they did last week, so let's hope we can get back on track. What I'm most afraid of is that they will run out of possible treatments and just leave me. I don't mind palliative care if it comes with counselling and painkillers, but I don't think I could cope with just being dropped out in the cold.

    xxx

  • FormerMember
    FormerMember

    Oh Hilary, I really wish that there was something I could do or say to help ! It's a beggar when the stuff needed to kill The Crab is hurting you so much ..... that really shouldn't be allowed, so perhaps worth looking into the oral chemo a bit more - or has the Consultant discarded that thought ?

    Here's hoping that the Vitamin B Complex pills offer some comfort to your fingers and toes, but maybe an occassional whiff of waccy-baccy wouldn't do much harm ...... ? Lucy in The Sky with Diamonds and all that.

    Love and gentle hugs, Joycee xxx

  • FormerMember
    FormerMember

    I know this is shocking, coming from an old hippie like me, but I'm not wholly convinced by the whole pot-as-universal-panacea argument, any more than I think Reefer Madness was a documentary. It may work for some people, but I don't know whether I'd be one of them. All it ever used to do was give me a headache!

    Anyway: I expect if the oncologist gives up on me, the Macmillan nurses and Sobell House will be able to offer me some help. At least. I hope so.

    xxx