Waldenstrom macroglobulinemia community

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

My WM story

Written by Anon, published 3 months ago.

1998. Every two years I had a check-up with my general practitioner (GP). I was feeling good, no problems, 56 years old. That year the laboratory tests of the blood showed a high sedimentation rate, that meant an infection or some severe illness. The GP advised a visit to a specialist for internal diseases and within three days Waldenström’s Macroglobulinemia (WM) was diagnosed.

The Hemato-oncologist in the local hospital had at that time no or very little experience with the treatment of WM. He wanted to start therapy with Chlorambucil (Leukeran). By mutual consent I went to an academic hospital, which had more experience with the treatment of WM-patients. 

The Professor of Hematology-oncology and his staff decided not  to start  with therapy yet but rather to “watch and wait”, because I had no problems and the IgM was low (15). I was in a good condition and could do all the things I liked: my work, gardening, skiing, mountain-walking etc.
 
2000. The IgM increased to 70, I had periods of intense perspiration at night and my feet and hands were frequently cold. These symptoms and the risk of hyperviscosity of the blood made it necessary to start treatment: Chloambucil (Leukeran), 2 weeks on and 2 weeks off. The IgM got down to 10. Although the Academic hospital is about 100 Km away from my home, I decided to stay with this hospital for the treatment because of their experience with WM. 
 
2003.  The IgM still remained low, but the other blood values became too low, caused by the Leukeran. Therefore I had to stop with the Leukeran, but I was feeling reasonably good, I still could do the things I liked to do. After a year the Igm increased again to 40 and I got Fludarabine.
 
2004. Fludarabine did not bring my Igm down, so it was stopped, and a new therapy was presented: Rituximab (MabThera) infusions in combination with Fludarabine orally. After 2 series of 4 infusions the blood tests were normal and I felt very good.
2005. 
 
Taking advantage of  my very good condition at that time the professor proposed to do an Allogenic Stemcell Transplantation (AST) in the “mini”-modus: a non myelo-ablative stemcell transplantation. That means, that not all my own white blood cells had to be destroyed before the transplantation, resulting in a less vulnerable condition during and after the transplantation. 
 
My sister and five brothers volunteered to be a donor, two of them proved to be HLA identical (Human Leucocyte Antigens). My dear brother, four years younger than I am, was chosen in the end, because he was living near the hospital. It took him three whole days, lying attached to a leukofarese machine, to produce enough stemcells for the transplantation. 
 
Despite the “mini” transplantation I had to take care and avoid all chances of infection: little contact with other people, especially crowds and small children, no contact with soil or  animals, clean surroundings in the house etc. Fortunately there was some  Graft Versus Host (GVH) in combination with Graft Versus Tumor. 
 
After 6 months I could stop the medication for the GVH and got the vaccinations that babies and young children normally get, in order to build up resistance again to all the usual children’s diseases. Some minor  symptoms of GVH still remain: local problems with the skin, which are treated with creams; dry eyes, which are treated with eye-drops and a special pair of glasses as a protection against draught and wind. 
 
2006-2009. Despite all the precautions I got some infections in the lungs and got therefore special antibiotic therapies.
 
2006-2011. With the help of my wife, who pushed me to take exercise, walks etc., I could slowly build up my physical condition to a level comparable with 13 years ago,  the more so bearing in mind that my age  is now 69. Since the Allogenic Stemcell Transplantation in 2005 I have had no medication for WM !
 
Conclusion. I am glad to be able to say thank you to my GP, the hemato-oncologist in the local hospital, the professor and his staff in the academic hospital, my dear brother, the donor, and specially my beloved wife, who coached me through all this.

Written by Anon, published 3 months ago.

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