Revlimid responsivness

[Birgitta-A]

Hi All,
Now they have discovered a somatic gene that will tell us if we will respond to Revlimid (and Thalidomide and Pomalidomide). The gene is called IZKF1 or Ikaros family zinc finger protein 1.

Low IZKF1 levels predict lack of immunemodulating drugs responsiveness and shorter overall survival.

This study is done in patients with Myeloma but other studies have showed that MDS patients are responding in the same way.
http://www.bloodjournal.org/content/124/4/536
Kind regards
Birgitta-A

[sbk007]

Hi Birgitta - thanks for posting that article. Good that they find such markers.
I always wonder why for high risk patients they go straight to Vidaza, and when that fails, they don't try revlimid or Thalomide.. I do see studies with chromosome 5 anomalies and I see combination therapy like Aza or Decibide with revlimid but I never saw any study about hi risk MDS and either revlimid or Thalomide alone.
Regards, Steve

[bailie]

It is interesting how people react to these combinations. I reacted very well to Vidaza with almost all blood counts in the normal range and getting better with every CBC. Then prior to transplant (the last three cycles) they added Revlimid and the blood counts were knocked back down but not too badly. I still feel fine.

[Birgitta-A]

Hi Steve,
As far as I understand Thalidomide is not up to date today. There are hardly any studies reported since 2011. Experts don’t recommend Thalidomide for MDS. http://www.croh-online.com/article/S...139-4/abstract

My doctor was surprised when I responded so well (more than 2.5 years) on that drug. In most studies they gave the patients 800 mg/day and they got severe adverse effects. I responded on 50 mg 4 days/week. Kirby Stone responded well too.

I don't think there are any studies that show positive results for Revlimid as monotherepy in high risk MDS. Vidaza shows much better results with about 50% responding and is recommended as first drug for high risk patients.

Then the combinations of Revlimid with for example Vidaza show up to 72% response in high risk patients. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3525020/

Hi bailie,
Hope for positive SCT results!
Kind regards
Birgitta-A

[Barbarab]

I have read Marrowforums since I was diagnosed w. very high risk MDS RAEB2 with multiple chromosomal anomalies (including 5q deleted) in June 2014, but this is my first post. My treatment was changed from Vidaza (to which I responded) in Sept. after 3 rounds and 4+ weeks of stable blood counts (with no treatment) to Revlimid to address the remaining 5q deleted shown in a new BMB. (It took two months to get insurance approval for the new drug.)

I have not found any references to this being standard treatment - to stop Vidaza so quickly and switch to Revlimid when only 5q- remains. (Although I have seen references to combined Vidaza and Revlimid treatment.)

But my main question is that since starting Revlimid 10 mg two days ago, I feel just AWFUL. I am dizzy, slightly nauseous, have a rash on my face/neck/chest, and just generally feel badly. Is this the usual experience? Will it go away? Or am I having a bad reaction? (I had no problems w. Vidaza and have felt well throughout this entire ordeal until now.) Would appreciate any thoughts/information others may have. Thanks.

[bailie]

Barbara, we know that everyone handles these medicines differently. Perhaps you are feeling lousy is because it is working for you. Who knows? I did not feel any differently when I was taking Revlimid. I can remember wondering what was the big deal, not realizing that I was lucky. They kept me on Vidaza while I was taking the Revlimid for my last three cycles prior to my stem cell transplant exactly 100 days ago today.

I hope this lousy feeling is only temporary and you will feel better soon.

[Birgitta-A]

Hi Barbara!
I should ask my dr at once if I couldn't take 5 mg Revlimid instead of 10 mg. It is common that patients can't take 10 mg.

Rash is common and is supposed to indicate that you will respond. It will go away. Look at "Revlimid adverse effects" for treatment.

As far as I know most doctors continue with Vidaza as long as the patient is responding. You know you can always go back to Vidaza if you don't respond to Revlimid.

Hope you will feel better and respond!
Kind regards
Birgitta-A

[Barbarab]

Thank you, Birgitta. This is helpful advice.

I see the Nurse Practitioner tomorrow and have blood work. I will ask about lowering the dose of Revlimid to 5 mg. (I notice that in some of your other posts, you mention that prednisone is also sometimes added.)

I feel better today, less dizzy, but the rash and itching are getting worse.

Barbarab

[Birgitta-A]

Hi Barbara!
You know I asked my dr if I could have Prednisone with Revlimid though I knew that the combination increased the risk for deep venous thrombosis. I got a DVT in my left leg quite soon. Since then i have to take a kind of Heparin shot (Innohep) every day.

Now when I don't respond to Revlimid my dr has ordered Prednisone again for my hemolysis (the red blood cells burst too soon).
Kind regards
Birgitta-A

[Barbarab]

That does not sound good, Birgitta. The NP did prescribe the 6 day dosepak steroid treatment for me. I am in the second day, but will pay more attention to leg discomfort. No effect on the rash as yet.

Revlimid is a very difficult drug to deal with, physically and psychologically.

Barbarab.

[Birgitta-A]

Hi Barbara!
You know DVT after the combination Revlimid and Prednisone is not so common in MDS as in Myeloma - that is why I wanted to try it. Hopefully you will manage!

Though I don't have the chromosome aberration 5q- I responded one year and was thankful for that.
Kind regards
Birgitta-A