Hello

I'm very glad to know there is an HCL research association in the US. I'm living in Europe, in Switzerland.  My HCL was diagnosed in 1992. I have been looking for such an association in Europe for years... do you know if there is one  ?I looked around on internet and didn't find .I would be glad to share my experiences in french ,my mother language...

Thanks for your answer.

 

I just want to inform you about a quite new treatment I was proposed :

Since  HCL  was diagnosed, I have been treated with Interferon alpha 2 a (Roferon, by Roche, or Intron A, by Essex )  :  2-3 subcut. injections of 1 million IU per week , six month a year... and then I was "free" for about 6 other months, until my counts were bad again or my spleen would swell.

These very small doses of interferon were sufficient to keep me in a good shape and I had very few side effects each time I started again the treatment after 6 months off.

But last month we decided to change the treatment because I seemed to get resistant ( I don't give all details ) ... after 15 years.

My oncologist-hematologist proposed rituximab ( Mabthera, by Roche ), 4 doses : one per 2 weeks. I started in mid January and had 3 doses already, having my fourth one on march 8Th.It is going quite well : before I receive the rituximab infusion they first give me an infusion of cortisone and another one with an anti histaminic  and then only rituximab going very slowly( I hope you understand my poor English... !). I have no side effect....I fall asleep for  a moment because of the antihistaminic ! And then i can go back home ( I can't drive because I'm too sleepy !). Each time I have the treatment they first take some blood : my counts are just getting incredibly good: we are working very well rituximab and myself! My doctor says I might get a very long remission after that.

 

Best wishes to you all !

Anouk  FAVROD BISETTI

MURGIER 3

2350 SAIGNELEGIER

SWITZERLAND