rollercoaster MDS

[celebrations]

Hi MDS-folks,
I was negligent about reporting you about my recent rollercoaster-weeks.
As you may know Revlimid is not yet approved for MDS by the EMEA in the EU. 5q-patients get it off-label in the meanwhile and mostly successfully fight for the costs to be covered by their social assurances. But as a trisomy8 my assurances tell me that the probable response rate is to poor, so they don’t pay.
Now there has been offered a big European Revlimid trial (double blind + randomized, 2 patients get the drug, one the placebo) for all karyotypes excluding 5q-. So I thought to give it a try with my docs wildly supporting me.
I went by train to another center of excellence some hours away and had myself screened for the study, lovely BMP included.
And then waiting began. After three weeks I was unofficially told that I would be in the trial. A couple of days later I got a phone call, that the blood work traced antibodies in my blood and because of that reason, they were still in discussion whether to take me or not. Then it became worse: whereas in all of my BMP-results before my bone-marrow had been always free of blasts, I am now having 5 %. This was the shock of the year! Final decision, I am not approved for the Revlimid-study. With the new information, I don't care any more. Because in my new stage Revlimid would probably do more harm than help.
I am not low-risk anymore. This is a real progression of the wicked disease after six years. To think about timing a SCT becomes real now. What is going to happen? Of course I will not be transplanted right away. No treatment decisions yet. There’ll be another BMP in November. If I stay with 5%....again nothing is going to happen. But if these leukemia cells will have increased another few points by then, well, then the SCT will be not as far away as I have thought it would be.
I am not yet ready for this. Here is my understatement: I am really not amused by the results of the last weeks.

Hope most of you have been better off!
Bergit from Germany

[Birgitta-A]

Hi Bergit,
Too bad with increasing blasts! Is it not possible in Germany to get Revlimid, Thalidomide or Vidaza off label especially when you have tried to participate in a trial?

I don't know how the drugs are paid in Germany but I thought that you have the same system as we have in Sweden. We pay drugs up to about 180$ per year - then all drugs are free. Very good for me since especially Neupogen injections are expensive. I have of cause paid more than 50% of my income in taxes all years.

I am getting Thalidomide off label. Then I can take a very low dose and combine the drug with Prednisone for best effect. I have had 0.1-0.2% blasts in blood since dx but after one year with Thalidomide I had no blasts in blood.

If next BMP shows 5% blasts or more I think you should ask your doctor if he/she could prescribe the drug he/she thinks is the best for you.
Kind regards
Birgitta-A
72 yo, dx MDS Interm-1 2006, supportive treatment until June 2010 when I started to take Thalidomide 50 mg 4 caps/week, Prednisone 5 mg/day and Neupogen injections once a week. Latest counts HGB 137, WBCs 4.2 and platelets 97.

[Al's Wife]

Bergit,

Sorry for the disappointing news. I know how I felt when my husband's blast numbers increased, and it is truly a rollercoaster ride.
Good luck with your decisions and I'm glad you have a brother who can be a donor, as this seems to have the best results.