Rare among rare: WM/LPL tumours
Written by raphael, published 7 months ago.
warning about rare WM/LPL tumours.
i have had the rare phenomenon of LPL/WM cells congregating to form masses or solid tumours. these masses may form through cancerous cells migrating from the marrow and then asembling at a particular site or through a single cell lodging in an environment that it likes and then proliferating - or a combination of both. they can occur anywhere in the body, and among the 10 or so people i know of with these masses, they have all occurred in different places. i have had (and still have) a few, but the major site was and is around the base of the spine. in fact the first one was actually inside the spinal column. i presented with symptoms of pain in the area, which led to my diagnosis.
there are 2 important things to note for patients, especially newly diagnosed. 1) a scan should always form part of initial workup, to identify any possible tumours lurking in the body. 2) relatively low IgM is not an indication that tumours are not present. most of the people i know with LPL/WM tumours actually have low (albeit abnormal) IgM .
Written by raphael, published 7 months ago.
3 comments for «Rare among rare: WM/LPL tumours»
[ Expand all ]
After many therapies including the one that lasted 6 months with clorambucil and rituximab I feel better, but my electrophoresis still shows the anomaly of my illness...lingering there...they also tried to recover stem cells but I don't produce them anymore
Hello, I really do not I have the most common symptoms of our disease, I have only purple spots on the chest and occasionally on the arms, I noticed that my legs, especially, were not going well, I had sore hips and burning in the abdomen, as if I had sunburn, then followed the pricking pain in the feet and very serious as a hammer,
I feel constantly tired, I lost a lot of strength and my muscles have been severely damaged. WM, has resulted in neuropathy for me, which creates a painful combination along with my other symptoms, no more nor less than other patients, all are equally terrible,
Now I 've started to live with dignity as I can, my sole purpose is to live as long as possible. I encourage friends, together we will win. Merry Christmas.
@giusi and @215
Thank you for your messages and comments about your own experiences with this unusual disease.
Best wishes for the New Year - may it be a healthier one for us all.
Phil
--
Phil Manning (English-language moderator)