Waldenstrom's Disease

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    Has anyone known anyone with Waldenstrom's Disease? My girlfriend just got diagnosed with it, and I know what it is, but wondered if anyone has any experience with it. It seems like a disease she can live with for a long time, but some literature is confusing. Thanks for your help.
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  3. 8 Comments so far...

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    If you haven't already found it, check out www.iwmf.com . It seems to have quite a bit of info, from support groups to an Internet listserv to a telephone hotline.

    Don't have any personal experience with WM though.
    Little_Babycatcher likes this.
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    Thanks Eric,
    That website was really encouraging!
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    http://www.cancer.gov/cancertopics/f...Sites-Types/WM

    It's not bad, but does need to be monitored closely.
    And Velcade is evil, just in case they start talking about that.
    Last edit by missy2b on Jan 29, '06
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    I'm a chemo patient with chronic lymphocytic leukemia. My nephrologist was concerned about my creatinine (1.6) and GFR (47) before chemo. Told me to stay off the NSAIDS. Now my numbers are much better (1.0 and 72) after rituxan and fludara. The neph speculated WM yesterday and said that my chemo for CLL was already the first line treatment for WM, both being B-cell lymphoma. I envision it as looking at the same disorder from two sides of a crystal. Whichever disorder is doing it, my main physical symptom is lower back, hip and leg weakness. The oncs hope that treating CLL will improve mobility and call me a unique case.
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    I have a couple (3 I believe in the practice) of patients with this. It characterized by an abnormal group of plasma cells that produce the paraprotein, IgM. It can transform into a high grade lymphoma, worst case or it can be a smoldering disease, best case. Prognosis/staging is done using the amount of beta2 microglobulin, serum IgM concentration, and hgb. It is not a benign disease.

    Our doctor said treatment is not indicated unless symptoms occur, hyperviscosity (one patient had strokes and was treated initially with plasmopheresis) B symptoms (fever sweats wgt loss) lymphadenopathy or hepatosplenomegly. Otherwise it is wait and watch we usually follow up every 4 months with B2M, SIEP, CBC, CMP and LDH. Can you tell I am training as his NP yet? LOL!

    He has told me several times in patients with smoldering multiple myeloma, treating early is detrimental. I don't specifically know if this is true with Waldenstrom's but I suspect it is. The last thing I read was that there was no one treatment better than the other. The oncologist/hematologist I work with gave Rituxin and chlorambucil. The patient is doing great.

    I think Velcade is a wonderful drug. We are having some success with myeloma patients using Velcade. I saw a patient Thursday whose SIEP was totally normal after treatment with Velcade, thalidomide, and prednisone
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    I saw the oncologist yesterday and told him that my nephrologist thought I might have Waldenstrom's because of my high IgM. The onc looked at my SPEP and said that the IgM was never high enough to indicate WM. So, cross that one off. I commented that he would probably prefer that my other docs would not give amateur diagnoses and would leave it to the specialist (him). He was professional enough to not agree out loud. Also off the table is CLL. I'm done with chemo after a total of 8 weeks--only 9 infusions. Since I'm on a nurses' site I want to praise the nurses at the infusion center. What a positive place!
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    I honestly wouldn't wish this disease on anyone. My grandmother was diagnosed a little over a year and a half ago. It took them 5 years to diagnose her! They say once you get it, you have roughly 7 years.

    Last summer she moved to BC and her disease became dormant. Just over a month ago, it came out of its dormant stage and its become very aggressive. She has to undergo a full body blood transfusion because she's deteriorating so fast. Since she told us, she's had several bad nose bleeds where she's passed blood clots the size of a golf ball. She barely has the strength to walk from the living room to the bathroom. She can't even stand for 10 minutes to take a shower. Two months ago she was walking around, going to Ihop for brunch and suffering from perfume allergies, now she's stuck at home on the couch with her remote as comfort.

    We expect she won't even make it to Christmas.

    After some digging online, I've found that some people say its Genetic but my grandmother's doctor told us it wasn't. I wonder...
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    I have it and have had it since I was 62 I am 70 now. It was tough at first but now I am doing the retuxin once or twice a year, prior to that i was doing retuxin 3 times a year for 4 weeks at a time. I feel fine actually I feel great. I do not have much feeling in my feet up to my mid calves. I feel pressure but nothing sensitive. I would not know if I had my shoes on unless I look at my feet. I can walk in the snow barefoot with out any discomfort, I'm not suggesting one does that. Of course I take oxycontin 20mg every 8 hours for pain. With out the oxycontin I walk like a very old man. I have been told to keep myself in good shape (which I do) because if I get run down or catch a bad cold etc. it could activate the Waldenstroms. If I start to come down with a cold they give me anti-biotis right away.
    That's about it. They have told me if I keep doing what I am doing I will be around for a long time.

    I hope this helps.

    Good luck.


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