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.