Hello, just thought that having been banned from the Cllforum years ago for no good reason, I would catch up with what has been happening to some of the people I liked so much. (I was banned for complaining about the ALT-MED stuff that used to appear so regularly there, and the fact that it was treated as serious, rather than the risible nonsense that it is.)
This is the original Cllforum isn't it?
I've just finished my third course of chemo, and the bone marrow biopsy reported no sign of CLL> unfortunately, Red cell Aplasia was found, my Heamoglobin had tanked to 65, and I was very worried. I had three blood transfusions, (gamma irradiated blood of course, dont want no GVHD) in the week after this issue was found, missed a dose by accident, and my HB is now 135, and it looks like the Apasia has gone. Phew. An excellent outcome.
Are there any of my old friends around?
Written by
andysnat
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The CLLForum, for many years was the largest online CLL support community and I know we have quite a few members in common, so I expect you'll find some old friends here. I wasn't aware that that forum treated Alt-Med treatment discussions seriously, but have heard that this is the case with some Facebook CLL support communities. This community endeavours to have an evidence based focus. The CLL forum platform reached end of life late last year and some members have transferred to a new CLLForum platform. Two CLL Forum members I expect you'll remember that were much valued volunteers here were Chris Dwyer ( healthunlocked.com/user/CLL... ) and Pat Kennedy ( healthunlocked.com/user/MsL... ). Sadly both have passed on, but not because of their CLL.
I take it you are veteran survivor of CLL, with your red cell aphasia MDS probably due to your earlier chemo treatment, perhaps FCR?
I remember you from the Forum! I only go there a couple of times a year now (I’m not even sure why!). I found it way too full of US politics, US insurance stuff etc and other things not really CLL-related. I joined around 2006.
I’m much more at home here now. There are some very good people contributing and you’ll find a lot more Brits!
It was ages and ages ago, probably ten years, and they didn't like me pointing out that mustard poultices and removing fillings from teeth aint going to make no difference to ones CLL. Gah.
I remember vividly some of your forthright replies! I won’t have anything to do with alt-med. I’ve been kept going for 22 years with more conventional methods and have no intention to change course now.
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So much to learn
ibrutinib, opposite effect.
Transplant coming soon!
Criteria to treat CLL
