Waldenstroms macroglobulinaemia - Lymphomas Message Board

Tara Carlow · 07-02-2002, 05:31 PM

I work with a lady who has this rare cancer. I just wondered if anyone else has heard of it. She has had it for about 6 years and has to take chemo and blood transfusions when her hematocrit gets too low.

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Jay Tor · 07-03-2002, 09:57 AM

Most of the Web sites that have any information about this disease are based in the UK. This link is to the Waldenstrom's Study site and has a description of the disease, therapies and survival prognoses:
[url="http://www.waldenstroms.org/public.asp"]http://www.waldenstroms.org/public.asp[/url]

Your friend's therapy may differ from what is recommended on this site simply because protocols tend to differ by country.

Tara Carlow · 08-11-2002, 03:19 AM

My co-worker died on Thursday, August 1st, from fluid building up in her right lung. She had already gone through the talc procedure on her left lung, which was successful. She had just started her second round of an eight-week chemo treatment and the fluid was being tapped until they could set up the talc procedure. The fluid was too fast though and that is how she died, trying to get her breath.

austin07 · 10-03-2008, 01:06 PM

Quote:

Originally Posted by Tara Carlow

I work with a lady who has this rare cancer. I just wondered if anyone else has heard of it. She has had it for about 6 years and has to take chemo and blood transfusions when her hematocrit gets too low.

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austin07 · 10-03-2008, 01:11 PM

Hi my name is Kelly my husband was diagnoised with Waldenstroms 7 yrs. ago. He has not had any treatment yet. He goes once a month for blood work. His last blood work cam eback and we have to start some kind of treatment. His Doctor is thinking of stem cell transplant where he uses his own stem cells. They freeze them 80 below and he has 3 or 4 treatments of chemo. Once that is done they put back his own stem cells.