I have just today found this site, and thank the good Lord for that bit of luck. I don't even know how this post is supposed to go. Earlier, I was rummaging around, and found a page listed as "Tell Us Your Story". I started telling about my cancer, but had to abort (wife called for dinner), and when I tried to get back to that page, I was totally unsuccessful, to say the least. Now, I find this "Start a discussion" page, so I thought I'd try here.
I have WM, and was diagnosed a year ago. Since then, my hematologist has had me on Rituxan, Decadran, (steroids), and Alkeran (chemo). The original IgM level was 7,940. It is now down to 7,020, but six months ago was down to 6,400 before bouncing back up again to 7,400.
The WM has exhibited itself through Perpheral Neuropathy, which has produced Neuropathic Eruptions, (blisters) on the heels of my feet. It took 8 months of constant care to cure those suckers. And, just last week, one broke out again. Now, after 8 months of showering with your feet wrapped, and taped in Ziploc bags, bathing without having to worry about getting the blisters wet was a real relief. So, now, we start over again. I'm going to have my hematologist give me a referral to a wound care center so that we can get this latest blister cured in less than 8 months, hopefully.
Research into WM is sketchy, mostly consisting of clinical trial results. Treatment regimens don't seem to exist. Soooo, anyone in the same boat, or with information that would be helpful, please write.
Sorry you joined our club. Google Dr. Treon at the Bing Center (part of Harvard Medical). He is an authority on WM and is doing research. You can sign up to get his newsletter. Also the International Waldenstrom's Macroglobulenemia Foundation or IWMF can give you lots of information. There are also WM support groups in some major cities. IWMF can tell you about that. This is a very rare lymphoma, considered an "orphan" since not much is known about it and there is no set protocal for treatment. Also, it can manifest and exhibit different symptoms/course in each person. However, due to the current research, we are hopeful for a cure, preferably in our lifetime. Hope you get those sores under control. You are the first I have heard of having the sores.By chance, do you have diabetes also?
I CAN'T TELL YOUHOW GREAT IT IS TO HEAR FROM SOMEONE WITH WM. THEY SAY IT'S A VERY SLOW CANCER AND I HOPE IT IS FOR US. ARE YOUR FEET OK? HOPE SO. I GET BLOOD BLISTERS AND HAVE CHEMO BRAIN BUT THAT'S ABOUT IT.
I'VE HAD THE "WM" FOR 10 MONTHS (AS FAR AS I KNOW). I ALSO TOOK RITUXIN ONCE A WEEK FOR TWO MONTHS STARTING IN OCTOBER 2010. AFTER THOSE TWO MONTHS MY ONCOLOGIST JUST TOOK MY BLOOD WEEKLY AND TOLD ME TO CONTACT HIM IMMEDIATELY IF MY TEMP WENT TO 100.5 AND /OR I STARTED TO GET TIRED AGAIN.
BY APRIL 7, 2011 MY IgM WAS AND I HOPE STILL IS 925 (DOWN FROM 2136 IN MAY). SO FAR SO GOOD BUT MY BLOOD NUMBERS ARE STARTING TO SLOWLY GO BACK DOWN.
MY HOPE IS THAT YOU CAN BY TREATMENT FREE AND HAVE NOTHING TO WORRY ABOUT.