Started Revlimid – Good results

[Kirby]

Hi all,
After 32 months on Thalidomide it started loosing effectiveness. It had taken me from 16% blasts in April 04 to essentially no blasts until some were detected in Dec 2006. Blasts were less than 5% but dysplastic cells were seen in the BMB for the first time since starting Thal.
We started Revlimid in late Dec 06. I have had no difficulties with it, my counts after 8 weeks are the best in many months. My platelets and ANC were not affected to any extent, this seems rare but we all react differently. Also, I am not -5q so response seems especially rare.
All counts are above minimums. The side effects are much less than thalidomide. When I was diagnosed in Feb 2004, no drugs for MDS were available, Thalidomide was used by some; it saved my life. Now I hope to get more years out of Revlimid.

Don’t ever give up and keep a positive spirit while fighting MDS.

[Naomi]

Good for you Kirby…revlimid worked for me for almost 3 years. I am always glad to hear that something works for others.
Na9mi

[Naomi]

Gees, I don’t even know how to spell my name.
Naomi

[sgoodman]

Kirby and Naomi,

What level dose are you taking? Thanks for the info.

[Naomi]

sgoodman: I took 10mg; had reaction, -hives- took 5mg;went out of remission then took 10mg and toward the end was upped to 15mg as I was still on the trial.
Naomi

[Kirby]

sgoodman,
I’m on 10 mg/day. No significant side effects. Some scalp itching but not bad.

[AB. SALEEM]

Hello Kirby,
Your responce to Revlimid is very encouranging. I am RARS, non -5q and have received blood transfusions every 8 weeks since June/06. My Medicare drug insurance company has denied Revlimid for me because I am not -5q. I will greatly appreciate knowing which Medicare insurance company you have and if it is covering Revlimid for you.

Abdus Saleem

[Kirby]

Dear Abdus Saleen,
My drugs are covered by Aetna thru a retirement insurance offered by my past employer. It covers the Revlimid without questions on -5q. You might try appealing, sometimes the clinic or Dr. can help in appealing. See if the insurance will allow it to be tried as an “off label” application, it has worked on non -5q MDS patients.
I also did very well on Thalidomide for 32 months, it is the precursor of Revlimid and has helped some MDS patients.

[faith’s daughter]

Mom had her first transfusion in the hospital and then 8 weeks later was her second. 4 weeks after that they started Revlimed and she needed to be transfused the following week. Then she went 3 weeks before next transfusion. The doctor wants to transfuse tomorrow (2 and 1/2 weeks since last) and still ordered a refill of the Revlimed. I see that a couple of you had counts come back to normal after 10 weeks. I know I should trust the doctor but going 8 then 5 then 3 and now 2 &1/2 weeks between transfusions has me concerned. She’s only been on it since 2/26 so if they transfuse tomorrow it’d be second one since starting. As you know transfusion day can tough. Do we just keep on keeping on and give it more time. I did talk to the pharmacist and he’d holding off sending the refill until I can find out if the doc wants to adjust the dosage.

[faith’s daughter]

Well the Revlimed finally started kicking in. On April 2 her platelet count doubled to 16 and then on the 9th it doubled again to 32. It was at 54 on the 16th so not quite double but I’ll take it. Her white and hemoglobin counts aren’t responding as dramatically but they are responding. I’m glad it kicked in. The doc was going to up the dose to morning and night and I was concerned about side effects. She started sleeping through the night when she got on it and I didn’t want her to be too tired during the day too.

[eve]

not sure if revlimed works in the same manner as vidaza, but my dad’s doctor said that if the vidaza was working in the way it was intended the first blood line to improve would be the platelets

also from my research it seems that the first blood tranfusion a patient gets usually has the longest staying power – then the need for them can become more frequent

good luck

eve

[AlexD]

Glad to see some good results after signing my life away that I won’t reproduce whilst on this drug.

I’m starting Revlimid tomorrow, 10mg with a course of asprin.

-Alex

[faith’s daughter]

Alex,
My mom’s 68 and she had to affirm she was past child-bearing age. Apparently you just have to hang in there until it kicks in. Mom takes hers at night because one of the side effects is fatique. Good luck. Oh and thanks for mentioning the aspirin–Mom may need it for a leaky mitral valve and at least I know it’s okay with Rev. Of course I check everything with her specialist and the pharmacist.

[AlexD]

faith’s daughter,

I’ve been taking the Revlimid now myself for the last 3 days without any noticeable side effects besides fatigue. I take it at night as well.

My doc just said the regular 81mg aspirin tabs would suffice with the Revlimid.

I was wondering, what is the average of time, if any, of side effects concerning the cell counts? I’ve been feeling way more fatigued then originally thought.

Alex

[faith’s daughter]

Hopefully someone else can help explain side-effects. Mom just mentioned the other night that she’s not sleeping through the night anymore but not when that started. And she’s still fatiqued. You’re young though and that’ll make a big difference. My mom also has a heart condition. Juicing and other dietary changes seem to help. Check the site–Sandy and Jimbob are good for advice on diet.

[Author]

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