Waldenstrom's Macroglobulinemia Support Groups

Posted by Cassie, Monday, February 25, 2008 at 10:00 AM by Cassie

Waldenstrom's Macroglobulinemia is a rare condition. In fact, only approximately 1,500 new cases are diagnosed in the United States each year. Due to this fact, many people who are diagnosed with Waldenstrom's Macroglobulinemia may feel alone in their battle. This is where Waldenstrom's Macroglobulinemia support groups can come in handy.

Waldenstrom's Macroglobulinemia support groups exist both in communities and hospitals as well as online. Ask your doctor if he knows of one in your area. If you can't find a local support group, consider joining one online. Simply run a search for "Waldenstrom's Macroglobulinemia support group" on your favorite search engine.

Waldenstrom's Macroglobulinemia support groups can connect you with others who are experiencing similar symptoms. They can also provide a safe place for you to vent your fears, frustrations and concerns. In addition, you and the other members can discuss treatments options.

Do you know of a good Waldenstrom's Macroglobulinemia support group? Share it here.

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Posted by Nancy

April 28, 2008 at 09:56 PM

I bleed profusely now. I don't have any of the other syptoms as I'm only 51 yrs old. But I've been diagnosed for 2 yrs now & smoke so that could be why my symptoms have occured earlier.

Whenever I get a paper cut at wk I need to keep tissues on it for over an hour to get it to stop.

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Posted by Sal Pellegrino

May 01, 2008 at 08:35 AM

im 75 years old I was diagnosed with WM 12 years ago.My Dr retired a new Dr ran a pet and ct scan also did a bone marrow test he said there is no sign of WM lust an abnormal high IGM count(2595) is this posible

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Posted by Elyse

May 04, 2008 at 05:17 PM

63 year old female diagnosed with Waldenstrom's syndrome 2 years ago. This was detected when a blood test was taken for an unrelated matter. I have had no symptoms at all, except for severe itching. My doctor has run every test and cannot find the cause. Anybody out there who has experienced itching as well?
My numbers keep increasing slowly but I feel fine. I get routine blood work every three months.
I am in the New York/Westchester area. Anybody out there with the same type of cancer?

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Posted by Jim

June 04, 2008 at 06:24 PM

For Elyse-I too have Waldensrom's. About one year ago I began itching. A dermatologist diagnosed it as eczema. I use little soap[Neutrogena], take Benadryl at bedtime, apply a moisturizer twice daily[Aqquaphor or Eucerin mixed with a bit of water] and apply triamcinalone cream locally when the itching gets too bad.

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Posted by Nicholas Jason Ford

August 07, 2008 at 02:05 PM

My father has been diagnosed with WMa for 15 years now. He has had other health problems too. Dont know if they are related or not. He was treated with Rituxen(?) a couple of yearsago and was fine for a while. Has a bit of pain now but could be related to other problems. (he's 73) Strong as an ox otherwise. There s a lot that can be done still and research is still going on. I am very optamistic about treatments now. Apparrently prognosis years ago was 5 - 7 yrs but I have heard people are now still plodding on after 25 yrs. Thats gott to be good news!!!!!!!

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Posted by Gregg

August 07, 2008 at 09:19 PM

For Elyse and Jim: I am 52 and was diagnosed with WM about 2 months ago. One of my key symptoms was itching so badly that I have scars on my legs and arms from scratching. This symptom has been accompanied by neuropathy in the same general areas. The itching is now mostly under control with a drug called Doxepin (wonderful stuff) and the use of Aveeno soap. Jim, I tried Neutrogena years ago and immediately broke out with an allergic reaction, so you may want to try a different brand? I also use Sarna lotion if I have any breakout itching.

When I asked my doctor about the itching, his answer was kind of vague: something about my chemistry being messed up with the WM as I recall. I have not read anything so far that links itching to WM; I thought I was unique, but it's nice to know I'm not the only one.

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Posted by Sophia

October 31, 2008 at 03:15 PM

Hi everyone! i was diagnosed 2 yrs ago. i'm 46 yrs old.
i had a bone marrow transplant a couple months ago and feeling great. i have had several transfusions and chemotherapy a few times also. I read all the e mails posted and have these comments to add..... the only time i had trouble with bleeding was when my platelets were EXTREMELY low. i was also put on birth control pills as a preventative (not for pregnancy). Itching occurs and drives me crazy but only for a short period of time so i chose not to take medication for this. My Igm was close to 5000 and is now undetected unless a special blood test is done. I have had my 5th bone marrow biopsy and waiting for results.....i'm keeping my fingers crossed.

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