Connecting Rare Disease Patients Globally
Waldenström macroglobulinemia (WM) is a rare form of blood cancer.
The last marathon
Written by giorgio_va, published 11 days ago.
After I turned 40 years old, I wanted to try running, and gradually I started running longer and longer distances, until I reached the marathon. This activity has become the measure of my well-being, and keeps me in shape, both physically and psychologically.
In each of the last 8 years I've run an official marathon, making it in around 4 hours.
Last year I carried out a perfect workout plan, and I ran the race (Venice Marathon) in 3 hours 55'10". When I crossed the finish line I didn't even feel the need to sit down, I changed standing up! Fantastic!
After a month, during a cardiac check up for a few episodes of high blood pressure, I gave the doctor my latest blood tests. Dated back almost a year before, I had taken them in preparation for surgery (removal of the parathyroid glands). And no doctor had pointed out the chart that appeared at the end, a curve of almost insignificant entity, but which indicated a suspicious monoclonal component (18%).
From there it all started.
The following tests confirmed a 22% monoclonal component, IgM value of 1950 mg/dL, and K chains. In the urine test Bence Jones protein and K free chains were found.
Diagnosed with MGUS, I was prescribed a series of check ups. Abdomen EG, chest CT scan, low-dose total body CT scan, Creatine Clearance. All were negative.
In March 2012, however, they carried out a BOM, which showed a lymphoplasmacytic lymphoma (IgM and CD 20+), with residual bone marrow of approximately 40%. Based on these tests, and on the blood tests, the diagnosis of Waldenstrom's Syndrome was confirmed, and I was told to continue the tests every three months.
In July, the gamma globulin decreased to 20%, my blood tests are stable, but the creatinine remains around the value of 1.4.
Despite what seemed to be stable to me, my doctor wanted me to begin the therapy with bendamustine and Rituxan in October.
I was puzzled and following my family's pressure, I consulted the chief of oncology at the San Raffaele in Milan. After visiting me and having examined the blood levels, the Chief confirms that his approach is not to start therapy for the time being.
In early October, my blood tests again confirmed to be stable, with gamma globulin at 20.4%. Considering the opinion of the chief of the San Raffaele, even the oncologist who was treating me at this point decided to postpone therapy, and tells me to go for follow up visits every four months.
This is the story from a clinical point of view.
From a physical point of view: Physically I haven't (yet) any noticeable symptoms. Psychologically, after the assignment of the "pink card" exemption for health service payments, due to a serious illness, it was a hard blow.
What will happen? Is it just a matter of time, and then the first symptoms will appear, and I will have to face the evidence of my illness and start treatment? How much time?
Under present conditions, my life could continue with the same pace as before, the same interests, if it weren't for this nagging question.
On the other hand, sometimes I think that this notice gives me a chance to get used to the idea and to face what might happen sooner or later.
When I look at the cases reported by some other members of the community, I think I should still feel lucky, because this disease struck me at a quite advanced age. Therefore, even with their help, I can exercise to run this last marathon in the best way.