[deltoid]

Thanks for the reply, however the link you supplied does not work.

How have you been doing on Revlimid?

[deltoid]

An update.

Mom went to the doctor, and she confirmed that she was never tested for 5Q deletion. Now check this: the doctor said they could test for 5q deletion with a BLOOD test. They took some blood, and sent it away, said the results would be back in one week.

Here are my options as I see them if the test comes back and it says she does not have 5q deletion.

1. The Patient Support Solutions. See if Celgene will pay. I imagine there will be substantial co-pays.
2. See if we can enroll her in a trial. Seems like that would involve several trips to Florida. I know mom wouldn’t be keen on that.
3. Change her health insurance. Change it to a plan that WILL pay for non-5q deleted patients.

Any other ideas or comments about the above?

Thanks very much.

[deltoid]

Just wanted to thank all for their responses.

In the last few days I did some research. I’m still not sure whether my mom has 5q or not, but she is going to take it up with her doctor this week. I printed out the one Morris articel, she is going to give it to her doctor. Teh best news is that I found out that Celgene may have a program that will provide Revlimid to her. It’s teh Patient Support Solutions program. For people without insurance or people whose insurance won”t pay. I printed out some application forms from their website. Anyone know anything about this program? I called someone who provides info at Celgene, and she seemed to think that my mother was a candidate for the program.

Quote:

Originally posted by deltoid:
Hello, my first post.

My mother, age 72, has MDS, diagnosed a few years ago, has taken Vidaza and has taken Revlimid for a few weeks. She is beginning to need blood transfusions, having received two late last year. Here is the problem. Her insurance company recently denied her coverage for additional Revlimid, saying that her tests, (given to her over two years ago,) do not indicate that she has 5q deletion. I am not sure whether it’s clear whether the original test was simply inconclusive, or whether it was definitively shown that she does not have 5q deletion.

My question. Is there an easy way, perhaps a blood test, which would show conclusively whether she has 5q deletion? My mother does not want to go through the bone marrow test that she had two years ago. Any other advice would be welcome.

Thanks.

[deltoid]

Quote:

Originally posted by jack moreno:
deltoid/mark

i read the Moffitt article & don’t see where it says it is effective w/ patients w/o -5q defect. i have heard of patients being given revlimid w/o the defect but only as a result of nothing else being available. deltoid, i’d ask her hematologist about giving her dacogen (decitabine) first. should be picked up by ins.

It’s right at the bottom. I quote:

“Additional data on MDS presented at the ASH meeting included data evaluating Revlimid in MDS not associated with a chromosome 5q abnormality. In this Phase II trial, nearly one-third of Revlimid patients achieved blood transfusion independence and remained blood transfusion free for a median duration of 41 weeks. These data results demonstrate that Revlimid can provide long-term clinical benefit in MDS patients with or without the chromosome 5q abnormality and dramatically help to improve their quality of life”

[deltoid]

Quote:

Originally posted by jack moreno:
deltoid
it would seem to me that cytology tests from a bone marrow biopsy should reveal the -5q defect or whatever the defect is. if you’re in AC, where are you going for your tests?

My mother is going to some hematology group, forget the name. SHe is meeting with the doctor this week, but she is under the impression that, since her test was done over two years ago, the cyto test was not done. In other words, she believes that she was not given the test.

Anyone know an inexpensive source of Revalimd?

[deltoid]

Sounds good, but my mother’s health insurance won’t pay for the drug, presumably because she does not, (*or her records don’t show) that she has the 5q deletion. Any ideas on how to get the drug?

Quote:

Originally posted by Mark NTN:
My doctor recently mentioned he is considering putting me on Revlimid. I have had a partial response from an ATG / Cyclosproine regimin which at first made all of my counts go up but in recent weeks my platlets have leveled off, white counts have dropped and red are holding steady with Aranesp. Because of his suggestion I have been doing some online research.

There is a recent online post which has some information regarding a phase II study of Revlimid done by Dr. Alan List at the Moffett Cancer Center in Tampa. In the study there is reporting which shows that Revlimid has been shown to be effective in patients without 5-q deletion.

Here is the link. I hope this helps.

http://www.medicalnewstoday.com/medicalnews.php?newsid=58731

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