Revlimid

[PattiDean]

Dean will begin Revlimid this week. He wants to know if it is better to take in the morning or evening.

Also, has anyone had problems while on Revlimid.

I think Dean is frightened after reading all the warnings that came along with this medication.

Thank you!

Patti

[riccd2001]

The warnings of side effects for Revlimid will vary for each patient. I took this drug daily in evening (10mg) for four months but saw no benefit and discontinued owing to low WBC on docs advice.

This medication is EXTREMLY expensive ($Can 10,000 per month) and you have to have financial assistance to continue taking it for any prolonged timeline.

I always took it in the evening because it made me extremely sleeply in addition to the usual fatigue with MDS. Taken at 7pm, I couldn't make it past 10pm. Honest!

[maria&lola]

Hi, Patti: My mom started with Revlimid although the doctor indicated it was primarily used for a different type of MDS than hers. We wanted to try to a pill therapy before coming in for the 5-day IV therapies. Medicare covered most of the cost and she had a very small co-pay for the first few doses, and then it was no charge. I'm not sure if a foundation grant was picking up the co-pay or not. We were only given or three weeks supply at a time, and had to return for bloodwork before the next prescription was filled.

Unfortunately she had a very adverse reaction and the medicine wiped out her marrow. She felt progressively worse, which she kept trying to deny. She looked generally unwell with a gray pallor, was sleeping a lot, developed petechiae and experienced dizziness. When I saw her stumble about in front of me, I made her call the doctor. The office actually wanted her to wait for her scheduled appointment the next Monday and I got on the phone and said it couldn't wait and that I would take her to the ER otherwise. She was seen by a different doctor that day. After taking her counts (3 times), she was immediately admitted to the hospital for blood and platelet transfusions and taken off the drug. She had never needed platelets before.

Once we were out of the woods, her doctor suggested that she go back on the Revlimid at a reduced dose, but my mom had had such a bad experience that she didn't want to. I don't know why the doctor never adjusted her dose while she was taking it.

Please note, my mom has an added complication of end-stage renal disease. Upon discussing this with another doctor, we felt that Dacogen may be the better route. We were told that Revlimid is cleared by the kidneys and since her clearance is less consistent with her home dialysis, it is harder to manage the correct dose; whereas, Dacogen is cleared by the liver.

As you a probably already know to do, I would just suggest being hyper-vigilent for any new symptoms and pay attention to declining counts.

[Birgitta-A]

Hi Patti,
We hope Dean will respond to Revlimid as well as he responded to Dacogen! You know that Revlimid should be combined with Prednisone or a similar drug for best effect. Many doctors start with 5 mg Revlimid and 30 mg Prednisone. The Prednisone is then tapered to 5 mg/day.

Revlimid (lenalidomide) and Prednisone (a corticosteroid) work in different ways when they increase HGB: http://bloodjournal.hematologylibrar.../2296.abstract

To avoid adverse effects it is much better to start with a low dose (5mg) - many patients like Maria's mother can't stand 10mg/day.

I started to take Thalidomide (similar to Revlimid) 50mg/day but my WBCs decreased and now I have been taking 50 mg four days/week - that is 29 mg/day during more than 2 years with positive effect. In many trials they tried to give the poor patients up to 800mg/day.
Kind regards
Birgitta-A

[PattiDean]

Thank you to each of you for your replies.

Dean's prescription is 15mg, which has us both concerned. Dean's blood counts improved dramatically last week after only the second cycle of Dacogen. His oncologist began saying Dean is in "remission", and he doesn't feel he has to continue with the treatments. We didn't like hearing that, since the Dacogen seems to be working, why stop it?

During his week on Dacogen, Dean actually felt a little better near the end of the week. He has been so tired and weak up until now so it was giving him hope. Then on Sunday he began feeling extremely weak again, he was sleeping all day, and his legs, from his knees down, became swollen. He stayed in bed, or his recliner, and kept his legs raised on Sunday and Monday. It definitely sounds like he should take the Revlimid in the evening, because he is already sleeping most of the day.

After reading the side effects that came with the Revlimid, Dean is so scared. We wish the doctor would have started with the lower dose, 15mg seems like a lot to start off with. The doctor has not mentioned taking Predisone along with the Revlimid, although when he is on his Dacogen cycle he is given a steroid.

Thank you Maria for telling me about your mother's reaction to this drug. I will now know to call the doctor or take Dean to the ER if I notice any adverse reactions. By the way, Dean had his left kidney removed over twenty years ago, he had kidney cancer, but luckily, had no chemo. His remaining kidney is in slight failure, but nothing terrible at this time, thank goodness.

We have an appointment with Dean's oncologist this afternoon. There are many issues we feel uncomfortable about with this doctor, and we are thinking of looking else where for Dean's care. Just want to get this appointment out of the way. Dean and I have many questions that his doctor hasn't answered, hoping it will be different today. Dean is not going to start taking the Revlimid until we talk to the doctor today.

Thank you again for being so kind and taking your time to answer our concerns. Everyone is very supportive and kind, you give us the strength and faith to keep going. Thank you!

[Birgitta-A]

Hi Patti,
If you look at Revlimid they write:
"Since lenalidomide is primarily excreted unchanged by the kidney, adjustments to the starting dose of REVLIMID are recommended to provide appropriate drug exposure in patients with moderate or severe (CLcr <60 mL/min) renal impairment". They recommend 5mg/day.
http://www.revlimid.com/hcp/MDS-dosing.aspx

Then there are several studies that have reported better response when Revlimid is combined with a steroid in patients with myeloma, myelofibrosis and MDS.

I hope you and Dean managed to tell the doctor that Dean won't take 15mg Revlimid/day because of his impaired kidney function and weakness!
Kind regards
Birgitta-A