Deletion 5q test and Revlimid canceled

[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.

[jaxem]

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?

[Neil]

The cytogentics portion of a BMB takes a bit longer to prepare than the rest of the info. Usually on the last page of the report. If you have a copy, take a look on the last page or two under cytogentics. OR ask her doc or the pathologist that that signed the report about any abnormal chromosomes. The info should be there.

[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

[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

[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?

[Suzanne]

Bone marrow tests can be made less unpleasant with drugs. She will probably need a new one since so much time has elapsed anyway. If she does not fit the quidelines that the drug is approved for,see if you can find a drug trial for the drug that she qualifies for. Then the drug company will cover the cost of the drug –ie the phase II trial mentioned in the prior post.

[jaxem]

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.

[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]

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]

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.

[chuckk333]

Deltoid,

I thought that you had to do a BMB and cytogenic study to find out the chromosome changes. Ask for more information and then share it with us, please.

Chuck

[jaxem]

deltoid
celgene will pay?? trial?? change health insurance?? you’re in AC and not that far from good clinics in Philly. you need to go to a good clinician to get her checked thoroughly w/ a bone marrow biopsy done 1st. i’m not that far away from you & willing to help.

[niol]

In my early internet travels when we frist learned of my wife’s MDS I learned most insurance companies will not pay for a med until the FDA gives it blessings. Hence, while Moffitt article indicates Rev does help out on other then the 5q issue the data must be presented to the FDA and approved by them before most insurance carriers will pay for it. Keep in mind Rev is one of the most costly potential long term usage drugs on the market. So the insurance companies are not going to easily agree to cover it.

I had a 30 dollar copay while the insurance company was charged 6570 dollars for the balance every 28 days. Now that I am laid off I have no idea what we will be doing here in the next four weeks. But hope God provides us some insight.

Keep the faith everyone
Ed

[Neil]

Hi Ed,
Did you consider a COBRA policy while laid off?

[Author]

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