Waldenstrom macroglobulinemia community

Waldenström macroglobulinemia (WM) is a rare form of blood cancer.

First Responder at the WTC by rsinrich published about 1 month ago

I am a 59 year old firefighter from NY. My story.... I am a 59 year old firefighter from NY that found out about having this disease a year after being a first responder at the WTC following 9/11.

Out of the 6 men on my "rig" one has already died of an even rarer cancer...internal rectal melanoma, one has growths on his face, I have Waldenstroms and another has had 3 operations on...

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My Story by giusi published about 1 month ago

Dear friends on this site, I want to tell you my long history with Waldenström’s disease so you can understand that sometimes symptoms are not understood or properly evaluated by doctors. It was about 2002 and I was working as a volunteer at a Caritas centre in the town where I live. I was doing computer work and suddenly began losing my sight. I would not be able to see the monitor for a few m...

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Sixth symposium on WM by Joanna published 4 months ago


2011, November 19
UZ Brussels
 
In the capital of Europe nearly 40 interested people come together to attend the sixth symposium on WM: patients, partners, caregivers. Dr. Fabienne Trullemans, connected to above mentioned hospital as a hematologist, starts with a very clear exposition of WM, the signs and symptoms, diagnosis and treatment. Newly diagnosed are reassured. All patients receive information about the current therapeutic arsenal available to treat the disease.
After lunch the audience can hear a very interesting p...

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Rare among rare: WM/LPL tumours by raphael published 4 months ago

warning about rare WM/LPL tumours. i have had the rare phenomenon of LPL/WM cells congregating to form masses or solid tumours. these masses may form through cancerous cells migrating from the marrow and then asembling at a particular site or through a single cell lodging in an environment that it likes and then proliferating - or a combination of both. they can occur anywhere in the body, and among the 10 or so people i know of with these masses, they have all occurred in different places. i have had (and still have) a few, but the major si...

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Waldenstrom macroglobulinemia Recent Activity

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    start of therapy
    topic, published about 20 hours ago

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    Beginning of therapy

    Chemo
    27/2 antinausea + bendamustine
    28/2 antinausea + bendamustine
    I reacted pretty well, I got a little sick, only the first 2/3 days but it was bearable, nothing serious.
    Anticlonale
    05/03 I took the Rituxan. I started at 09.30. Aspirin + a dose of 100ml with infus...

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    Holistics
    topic, published 1 day ago

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    Is there anyone else in this community that has tried or uses B17?

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    Interesting article on the future of cancer research and treatment
    topic, published 6 days ago

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    Dear all
    You may find the following interesting:
    http://io9.com/5883180/why-havent-we-cured-cancer-yet
    The article makes the point (among many others) that targeted treatments are emerging particularly in small disease groups. It looks like those of us who have rare diseases have something to ...

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    Presentation of WM Genetic Basis and Therapy
    topic, published 20 days ago

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    From a lecture Dr. Steve Treon of the Bing Center for WM recently gave for the New England Support Group: http://bit.ly/AwAkgP

    Has anyone been to visit the Bing Center?

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    Bing Center for WM
    topic, published 20 days ago

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    I did not yet found the time to see the whole lecture of doctor Steve Treon . But what I saw is absolutely amazing. Dr. Treon brings his presentation in a way that even a non-English speaking can very easily follow. The language is clear, the explanation is easy to follow through the slides, and ...

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    An alternative treatment for cancer??!
    topic, published 29 days ago

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    Recently I discovered that POTASSIUM ASCORBATE can help cancer patients. I learned of this by chance, so I started taking it and by chance I feel a lot better. The fatigue, though still present, occurs less often. Before, whenever I climbed the stairs or walked uphill, I would get out of breath, ...

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    l’Association Waldenström France plaquette d’information
    document, published about 1 month ago

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    La plaquette d’information éditée par l’Association Waldenström France a été conçue et réalisée par les membres du bureau de l’association, validée par des experts, à l’attention de toutes les personnes atteintes de la Macroglobulinémie de Waldenström ainsi qu’à leur entourage.

    Elle est destin...

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    WM
    topic, published about 1 month ago

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    I no longer can run, walk in the mountains or play football!
    Hello, after many tests I have discovered that I have WM. It all started when I felt more and more tired every time I ran or walked in the mountains. I thought I was just out of practise and tried to do more but to no avail. The doctor...

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    newly diagnosed WM (new member)
    topic, published about 1 month ago

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    Just a brief history. I live in Saskatchewan, Canada. I'm 66 and retired..and except for a bout of colon cancer 16 months ago (completely clear now) I've had a relatively disease free life. Aprox 30 years ago I was diagnosed with chronic lymphatic leukemia. I was advised at that time that I w...

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    our pathology
    topic, published about 1 month ago

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    I have been followed as a patient for two years at the San Raffaele in Milan. I would like to know clearly why in Italy our pathology that is known as "blood cancer" abroad is not recognised as a rare disease in Italy? if the Italian state would consider those who suffer from waldenstrom's as bei...