Waldenstrom macroglobulinemia community

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

My Story

Written by Anon, published 3 months ago.

A man aged 56 years old.  Working actively in industry with many international connections and travelling a lot. Maintaining health by jogging and swimming. Even ran full marathon in 4 hours. This was the starting point of my story with Waldenström. No symptoms, no fatigue, just feeling well.

My employer allows us to have medical checks every 5 years.  Going to hear the results… I was anticipating to see a smiling doctor to tell how well I am doing , congratulations. In principle my results were pretty good. Hemoglobin slightly lower than 5 years ago , but still good . Only thing disturbing the harmony was sedimentation rate. That was too high . Any inflammation recently? No, as far as I know. Please come again after 3 weeks. 

I came, same situation. Special blood-tests and finally a bone-marrow test. Invitation to hospital to meet a hematologist. His message was like to be hit by hammer.  “Waldenström´s macroglobulinemia, a malignant blood-disease, incurable, can be treated . In your case no treatment at the moment, may be not in coming 2-3 years. Next check up is in 3 months.”
 
That was the beginning of my new life together with cancer. I started to collect information. The disease is very rare, more common with males over the age of 60. The median survival of patients is approximately 5 years. Seems I can never enjoy the relaxing years of retirement. 
 
I continued in my job as earlier and did not inform my employer and colleagues.  Besides family members, I was very selective in information and tried to live as normally as possible. The medical checks continued after each 3-4 months. Hemoglobin was dropping slowly and sedimentation rate remained at same level = higher than normal. 
 
Gradually I could recognize increasing fatigue, no other clear symptoms. After 6 years the level of hemoglobin came to level, which was disturbing my normal life. My doctor started treatment with Aranesp, which is stimulating the production of red blood-cells. 
 
This was working good 2 years . It was time to start “real” treatment.  My doctor proposed Cladribine+Rituximab . My question was, why couldn´t we try Rituximab alone? This was accepted. 
 
The adverse reactions made the treatment very unpleasant, but somehow I could  take all 4 infusions. Result was not very dramatic. IGM, the main indicator of this disease dropped 30-40 %. 
 
It took only less than one year when I and my doctor were considering the next step. Fatigue was disturbing and something should be done. The proposal of my doctor was Rituximab +CHOP. I knew how harsh CHOP treatment is .
 
Recently, I had read report of old-new drug called Bendamustine and excellent results reached in treatment of WM. After discussions agreed with my doctor to take Rituximab+ Bendamustine , not CHOP.  However, the allergic reactions during first shot of Rituximab were worse than ever. My doctor decided to replace it by Ofatumumab.
 
So my protocol was Ofatumumab + Bendamustine. It took only a couple of weeks to see the results. Hemoglobin was climbing nicely, sedimentation rate coming to normal level and the big issue, IGM dropping dramatically . After 2 months my doctor was pleased to tell that my blood is now very much back to normal complete remission.
 
I am again living very normal life after 9 years after my diagnosis. How long, nobody knows. It may be one year or five years. Is the same treatment then again effective? Nobody knows.
 
I am happy in this very situation.

Written by Anon, published 3 months ago.

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Patient groups

Waldenstrom macroglobulinemia Recent Activity

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    International Waldenstrom’s Macroglobulinemia Foundation Newsletter Volume 13.1
    document, published 4 days ago

    show transcript

    This publication is designed to provide information about the disease Waldenstrom’s macroglobulinemia. It is distributed as a member service by the International Waldenstrom’s Macroglobulinemia Foundation, Inc., to those who seek information on Waldenstrom’s macroglobulinemia with the understandi...

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    3rd International WM Forum - New Year Newsletter
    document, published 8 days ago

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    This is an update on the Third WM International Patient Forum in London on 11th March, following on from the successful Stockholm and Venice meetings.
    The event is being hosted by WMUK and generously sponsored by the IWMF and the EWM network .

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    our pathology
    topic, published 8 days 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...

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    newly diagnosed WM (new member)
    topic, published 12 days 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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    3rd International Patient Forum on WM
    document, published 16 days ago

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    Updated agenda and registration form

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    Presentation of a new member
    topic, published 18 days ago

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    Hello everybody: my name is Pedro Mingo Pérez, I am 52 years old, I am married and I have five children. I have always been a healthy man till I was 50 years old, when one day I started feeling bad. After several studies, WM was diagnosed, associated to a CIDP, my IGM index was 2500, I started 6 ...

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    Possible vaccine for WM in development
    topic, published 25 days ago

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    While one must always treat information about possible new treatments with caution, especially in the early stages, I thought you might be interested in the following, recently announced in the USA. Here are some quotes from a press release:

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    [email protected]
    topic, published about 1 month ago

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    Berrueta Michelangelo, I have 47 years I am married and I have 3 wonderful children. A boy and two girls. Murchante Location in the province of Navarra in Spain, near France. Perhaps E.E.U.U. I know my province for my capital Pamplona is called, is well known and famous by the book "Feast" by Ern...

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    Genetic mutation and Waldenstrom
    topic, published about 1 month ago

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    Researchers identify genetic mutation responsible for most cases of Waldenstrom's macroglobulinemia: http://bit.ly/sHjRBN

    From the Dana Farber Cancer Institute and Steven Treon, MD, PhD

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    colon tumor + waldenstrom
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