In June 2013, at the age of 62, I was prescribed a blood test before undergoing surgery. The results came back indicating that I was deficient in the blood clotting Factor VIII. Doctors then thought that I might be suffering from von Willebrand disease, and I was sent to the hematology service at the regional hospital in Bourges, France.
After consultation at the hospital, new blood tests, including an electrophoresis of proteins, showed a peak in the beta-2 microglobulin protein of 39 g/L. At the time, nobody knew what I was suffering from.
I had to wait for the results of a myelogram performed on January 2, 2014, to be able to put a name to my disease: I was suffering from Waldenstrom’s disease.
Thanks to the leaflet I was given by the hematologist, I found out about “Waldenstrom France.” As I had never before heard anything about this rare disease, I immediately became a member of the organization.
On January 14, 2014, I started on the first of six treatments of cyclophosphamide/prednisone/rituximab ordered by the hematologists at the Bourges hospital. The side effects of the treatment varied – there were none with rituximab, but I suffered from insomnia with prednisone and strong nausea with cyclophosphamide, luckily kept under control with Zophren [also known as Zofran].
After the sixth treatment, at the beginning of June 2014, a new checkup showed that my protein peak had dropped to 23.18 g/L, which was still high, and that my sedimentation rate was back to normal.
It was then decided to stop treatment with a view to re-assessing the situation in December 2014.
In September, my peak was still 23.86 g/L.
In the meantime, thanks to “Waldenstrom France”, I was able to exchange information and share my experience with other men and women suffering from WM. This communication allowed me to better understand this illness and to accept it.
I hope that I will be able to put this strange illness “on hold” as long as possible so as to enjoy moments of tranquility and the simple pleasures of life. Modestly, I am looking forward to contributing to “Waldenstrom France” by taking part in the organization of the next general meeting in Toulouse in May 2015. There I’ll be able to meet WM patients from all over France, and I am looking forward to exchanging information face-to-face with my new companions in adversity.
I send my best wishes and support to all of you.
Paulette Tribondeau, Dec 2014