Waldenstrom's

Love to hear from others who have WM and hope to help with support and share each others experiences with the disease. Have had Waldenstrom's since 1991.
Sue

My mother was just diagnosed and it feels like we are in a world wind-she starts chemo on Monday and I was hoping that you would have so hopeful stories or at least some information on what to expect. She does not really share all the information she's been given and I thought it would be helpful to hear from someone that knows what she's going through. If you could give me anything It would be great

Hi Dawn,
I was wondering the age of your mother. I will tell you one thing I know, they have come a long way with new treatment since I was diagnosed in 91. They are using combinations of meds that are doing great. Your mom may experience discomfort but they also have shots that they give to help with the nausea.
Do you know anything about what her IGM count was? Some has very high counts but mine is only around 2000 but some people get up to like 15,000 and higher. It just has to be knocked down and keep from building in the bone marrow.
I am sure she will be fine. I have had it for so long, it doesn't worry me much. I know they have new treatments and they work.
Please let me know and keep in touch.
Sue

 

On 12/2/2005 Sue 1991 wrote:

Love to hear from others who have WM and hope to help with support and share each others experiences with the disease. Have had Waldenstrom's since 1991. Sue

Sue, it has been over a year since your post, but I thought I would try to contact you anyway. I am a 49 year old female and I was diagnosed with WM last January. It is really hard to find another female with this disease, so I was hoping you still have access to this site and will reply. I  really need someone to talk to .

                                Hope to hear back from you soon.

                                                Sandy

PS my email is