Fibromyalgia and Chemo

Hi

I can't personally help with your question, but I see it's slipped to the second page.  It doesn't look as if it's a particularly common query as I've searched the MacMillan site and have found this post from a long time ago.

There's a bit of information on it from someone who replied (I expect the original poster / responder aren't on the forum now as quite often once treatment ends people don't need the support and leave).   You will see the first reply is from a member of the MacMillan team and they have included the telephone number should you want to ring the helpline and see if you can get some more information.

Hope this helps a little.

Bet wishes, Lesley

Thank you. 

I'm sorry you're going through this, Mrs Purple  Although I can't directly answer your question,  I've been living with Severe ME & Fibro for 7 years. My fatigue is very disabling and has been life-changing. I don't know yet whether I will need chemo as well as the already advised mastectomy, radiation and hormone tablets. They'll decide regarding chemo after my mastectomy.

My main reservations about chemo are around compounding my fatigue, but also my neuropathic pain. I already spend most of my time bed-ridden from fatigue. In the early days, I used to be almost exclusively bed bound and those were hard times. Most days now I can get to the toilet and feed myself, even though I can't cook or chop food or wash every day, or walk very far. And I do need help around the home.  It would take only a small increase in fatigue for me to fully lose my independence again. And I don't want to go back to that. That for me will be the crux of my decision about chemo if and when I have to make it. But those things will also be impacted to some extent by surgery and radiation and possibly also the hormones. I think I can only make one decision at a time about these things, and play it by ear, as it were. Im only just starting this journey. 

What are your concerns about chemo and Fibro? Different chemo drugs apparently have different side effects and for different durations of time. Perhaps you could arm yourself with information about the particular cocktail of chemo drugs that your oncologist has in mind? I know finding a doctor who understands anything about Fibro is rare, but there's no harm in discussing your concerns with your specialist. They might be able to advise or give you some options.

Regarding Fibro management itself, I feel benefit from dietary interventions and carefully managed rest and sleep. Exploring those sorts of things might help you feel as well as you can before your chemo starts, if you do decide to give it a go. 

Good luck with whatever path you take. I hope there are some other Fibro peeps on here who will share their experience of chemo.