Hi All,
New user here. Could anyone give advice, even anecdotal, on how those of us who have had Chronic Fatigue / M.E. in the past (now recovered) might fare with chemotherapy and, or tamoxifen (with zolodex)?
I am right on the bottom of the % for benefiting from chemotherapy in terms of population (survival/ recurence) stats for those who are otherwise healthy, but have only been effectly recovered from Chronic Fatigue / M.E. for about 2 years and still get very tired from having a cold, etc., but thank goodness no longer have the debilitating aches and numbness in my limbs and such like.
My oncologist says have chemo with tamoxifen on the basis of pop stats, but also said have tamoxifen & zolodex (no chemo) based on his 5 min chat about my personal CFS / ME status.
As you might imagine this has left me struggling to make a decission I can live with positively. Best F~
Gosh, that is a hard position to be put in. Can’t help I’m afraid, but sending sympathy and wondering if maybe it would help to discuss it through with your GP?
Hi Wolfie
I’m sorry I dont have any experience of ME/chronic fatigue but was offered the same treatment choice. My oncologist showed me the computer programme that worked out my percentages. The difference between rads, tamoxifen and zoladex or chemo, rads, tamoxifen was less than 1% difference. I made my decision purely on the maths, only time will tell if it was the right one or not.
I went with the rads, zoladex, tamoxifen route which is what the oncologists both (I had two opinions) gave as their first choice. they have given me 94% of ten year survival. I’m 39, pre menopausal and so far 6 weeks into tamoxifen/zoladex have had no adverse side effects.
I really feel for you given this choice, believe me there are times when I wonder if its the right choice but like I said only time will tell. I have taken comfort in the fact that we are so closely monitored .
Good luck with everything, I discussed it at length with my breast nurses and surgeon and they were a wonderful support system. Fingers crossed for you and thinkingof you at this tough time. Shonagh xx
Hi Cryst & Custard,
Thanks for your mails. I gave the whole thing more thought and came up with a plan which I have now put to my GP and got good feedback on and I think my oncologist is probably on board too.
So, here it is ~ as when I had fullblown CFS / ME I was hyper sensitive to all drugs ~ as many people are ~ I have suggested to my GP what he has called ‘A personalised drug trial’; taking a ste-by-step approach to therapy.
Normally chemo is followed by tamoxifen. So what I am going to do is trial taking tamoxifen for a week (now 51/2 weeks from surgery) if I have no serious side-effects I shall then trail taking chemo ~ with the oncology team made aware of my situation. I know they take great care in administering these drugs, but the idea is to draw there attention to expecting the unexpected.
If I don’t fair well with tamoxifen then we’ll stop that and I shall not have chemo. I realise tamoxifen and chemo are very different drug types, but this is a test of bodily sensitivity of any drug being introduced, not just specific drugs.
As my CFS/ME was sensitive to hormones I have asked to avoid zolodex if at all possible and am seeking to have my ovaries removed surgically if I can’t do chemo.
Hope that makes sense and is helpful to anyone else in my situation.
Ta & Best F~
Hi Wolfie,
Well done on making the decision, you sound much more focused now. Good luck with everything I will keep my fingers crossed for everything working out for you.
Love S x