Question re: Revlimid/deletion 5q

[SurvivorGirl007]

Hello Everyone,

As some of you may have read on my other post, my 71-year old mom was apparently diagnosed last winter with MDS (she's not told me or my brother, and our dad is pretty clueless, as well - he's the one who pulled out an insurance form to give me her diagnosis and the name of her medication, which is Revlimid). From what I've been reading, I see that Revlimid is used to treat a subset of MDS that is caused by "deletion 5q chromosome." I have two questions for anyone who takes this drug:

Is it used to treat any other subset, or is deletion 5q the only one?

How does deletion 5q affect life expectancy?

Thank you for your help! My dad and I need all the info we can get.

[riccd2001]

As with most treatments there are side-effects that may affect patient health. I was on the drug for about 4 months at 10mg per day. Doc discontinued it owing to a significant lowered WBC with no sustained increase in Hgb. The main side effect for me was decreased energy and increased need for sleep (12 to 14 hours per day).

If you do a little research here and at MDS website, you find out more info on newer clinical trials for lower dosing and in combo with other treatments like Vidaza.

If it works, you will have fewer transfusions and may not have to deal with iron overload treatments.

[Mary4Mike]

My husband tried Revlimid for maybe 6 cycles. He showed no improvement in counts, but also had no side effects. He did not have the deletion 5Q chromosome. They tried it anyway because there was nothing else available at the time. I don't know if insurance will pay for treatment without the 5Q or if they are even giving it to people without it anymore. It doesn't work for everyone with deletion 5Q. This is the trying thing about this disease. One treatment doesn't effect every patient the same way....there is no tried and true protocol for MDS. The only cure, so far, is transplant.

All the best to you, your dad, and your mother. Your dad will need your help and support through this.

Mary

[Greg H]

Hi Survivor Girl!

Revlimid is approved by the US FDA (I'm guessing you may be in the US) for MDS patients with deletion 5q. In the clinical trial that won FDA approval, it resulted in transfusion independence in 63% of the deletion 5q patients who took it. Studies in non-deletion 5q patients have so far tended to show it helps about 25%. As others have mentioned, it is being further tested in non-5q folks, in combination with a variety of other drugs. Some doctors will prescribe it for non-5q- folks, though it can be hard to get health insurance to pay for that "off-label" use.

Deletion 5q is considered a "good" or "favorable" cytogenetic abnormality in the scoring systems that docs use to think about prognosis. For instance, in the most widely used scoring system, the IPSS, a 5q- abnormality adds no points to the patient's score, which is another way of saying that MDS patients with 5q- have no worse prognosis than those with no cytogenetic abnormalities at all.

Some folks have 5q- and other abnormalities as well, and that changes the scoring. Having multiple abnormalities is riskier.

In the trials, almost every patient experiences some side effects with Revlimid. Having WBC and platelet counts go down is common -- sometimes to the extent that the drug has to be suspended for a while, or the dose reduced. Fatigue is also very common.

Hope that helps.

Take care!

Greg

[SurvivorGirl007]

Thanks so much for the great info, everyone!

[knstone]

I've used Revlimid successfully without -5q. It helped my Hgb but after 18 months it caused the platelets to drop.
On Medicare-D the drug should be covered, but it may not on non Medicare drug insurance; in my case it was covered on both.
It is expensive but if you are on Medicare-D you can get copay assistance from other organizations assuming the family income is less than about $73k, this does not include income from IRA withdrawals. Two organizations that can help are: Patient Access Network and Chronic Disease Fund.

Of all the many drugs I've taken during almost 8 years with MDS Revlimid has been the easiest to take with the fewest side effects in my case.