Revlimid

[vickij]

I started revlimid 2 weeks ago & I wanted to know how long it takes to know if it is working and what is it supposed to do ? I had to have a transfusion of 3 pts after being on it for 9 days. My hemoglobin was 5.8. I am waiting to hear from IU Med Center about bone marrow transplant. It is hard not to be scared when you never know when you will need a transfusion.
I am so thankful for this web site. It is nice to read posts from others going through the same thing.

[riccd2001]

Like many treatments Revimid (5 or 10mg?) takes a while to show an effect - 6 months is common but YMMV. I only lasted for 4 months on it before WBC and neutrophils were too low to continue.

[vickij]

Thanks for the info. I am taking 10 mg revlimid. When I ask my Dr about treatments or meds, he says that everyone responds differently.
I noticed all of the transfusions you have had. How do you know when you need transfusion ? Do you have regular tests or can you tell by the way you feel ?

[riccd2001]

Hi V: My hema doc has ordered no transfusion if my Hgb is over 90g/L; 1 between 80 to 90; 2 between 70 to 80; 3 under 70. Since I've had so many PRBCs, there is a slight overlap because I have to be cross and typed tested two days before transfusion and my Hgb drops about one point a day.

I use Exjade to maintain serum ferritin level around 1000. I have to keep track of my Creatinine level since Exjade does increase that as a side effect. I do have to take a break from Exjade once or twice a year, usually for a month or so.

I can tell when I'm down around 70g/L mainly by SOB. The lowest level was 39 and that's when we agreed that I needed testing every three weeks. So far, so good.

[Birgitta-A]

Hi Vickij,
Your doctor is right when he says that everybody responds differently. Some patients respond after 1 month and others start to respond when the drug already has been stopped after 6 months.

Don't you take Prednisone or a similar drug - Revlimid is supposed to work better when it is combined with for example Prednisone during the first 3 months.

The way Revlimid is working is very complicated. Here is a study about Revlimid and a drug similar to Prednisone. In short Revlimid (lenalidomide) increases the young red blood cells.
http://bloodjournal.hematologylibrar...18/8/2296.full
Kind regards
Birgitta-A

[vickij]

Well I just spent another night in the hospital getting 4 pints of blood. My hemoglobin was down to 6. The Dr told me to quit taking the revlimid. I have an appointment with him tomorrow. He mentioned doing the atg again , I don't know if that will work. I hope they hurry and find a bone marrow doner. This is getting scary.

[Neil Cuadra]

Originally Posted by vickij

Well I just spent another night in the hospital getting 4 pints of blood. My hemoglobin was down to 6. The Dr told me to quit taking the revlimid. I have an appointment with him tomorrow. He mentioned doing the atg again , I don't know if that will work. I hope they hurry and find a bone marrow doner. This is getting scary.

I suggest asking about the tradeoffs between ATG and another MDS drug, and whether there are any clinical trials that match your circumstances and might be worth considering.

Any progress finding a transplant match?

[vickij]

He has mentioned other drugs before. I will find out tomorrow what he suggests. I haven't heard from the transplant Dr. this week about their search .He said he would keep me informed. My hematologist was going to call him yesterday, so I should find out about that tomorrow also.

[vickij]

Saw my hematologist yesterday, he says its possible that the revlimid could have caused my blood counts to drop. He will check my blood again on Monday. He will then call the transplant Dr. to see what he wants him to do as far as treatment & see if they are close to finding a donor.
Last week was the scariest I have had. While I was waiting for the hospital to call & tell me that my blood had arrived for transfusion. hmg was 5.9 ( I have antibodies & they have to send to blood center in Indianapolis for my blood ) I felt dizzy and sat on couch, I guess I passed out. My husband said I was gasping for breath and he couldn't wake me. When I woke up we went to the ER and I was admitted to hospital.
Is it normal to be this fearful all the time and will I get over it after transplant ?
I am so thankful for this site where I can get advise from people going thru the same thing.

[Birgitta-A]

Hi Vicki,
It is true that Revlimid can cause all counts to decrease before they hopefully increase.

If you not had been very scared when your HGB was so low that you passed out you should not have been normal - a terrible situation.

I have many irregular antibodies too and always leave a blood test at the hospital the day before a blood transfusion so they will have the blood ready for me when I came to the hospital.

Hope your doctor will get positive news from the transplant doctor!
Kind regards
Birgitta-A