MDS with 5q-deletion - I need some advice

[layla g]

Since my last post my mother has gotten worst. We bought Linalidomide 10mg.
But the Doctors in Iran refuse to give it to her. They all say that Thalidomide
(which she is currently taking) is the same as Linalidomide. She had the transfusion last week and despite that her platelets and the Hb were very low,she has severe pain round liver, she is in hospital and they say her condition is rapidly becoming worst and has turned into cancer, they have given her 6 units of platelet and another transfusion. I really do not know what to believe.The Hematologist in Aust. said Linalidomide(Revlimid) will improve her condition drastically. Will it? . I fear losing her! not being able to do anything
from here.

[Ruth Cuadra]

layla,

I'm sorry the dilemmas about how to help your mother are complicated by distance and the politics of embargoes.

We bought Linalidomide 10mg. But the Doctors in Iran refuse to give it to her. They all say that Thalidomide (which she is currently taking) is the same as Linalidomide.

In fact, Lenalidomide (generic for the Celgene drug called Revlimid) is a derivative of Thalidomide that was introduced in 2004. It was originally intended as a treatment for multiple myeloma, for which Thalidomide was a standard treatment, but it was found to be effective for MDS. In particular, patients like your mother with the -5q deletion, have been helped tremendously by Lenalidomide.

She had the transfusion last week and despite that her platelets and the Hb were very low,she has severe pain round liver, she is in hospital and they say her condition is rapidly becoming worst and has turned into cancer, they have given her 6 units of platelet and another transfusion.

An enlarged liver and/or spleen are common in MDS patients. Patients with abdominal pain and low platelets should be examined for an enlarged spleen. Sometimes removing the spleen will improve the patient's platelet count.

I really do not know what to believe.The Hematologist in Aust. said Linalidomide(Revlimid) will improve her condition drastically. Will it? . I fear losing her! not being able to do anything from here.

I think the hematologist is Australia is correct that your mother's condition should improve with Lenalidomide, but it may be an overstatement to say "drastically". If she can get the drug, it should help stabilize her condition within a few months and even help slow or stop the progress of her MDS. You should try to find out from the doctors in Iran why they are saying her disease has progressed to cancer, presumably leukemia. This information could help you understand if Lenalidomide is still an appropriate treatment for your mother of if she should be being treated for a different disease.

Hope this helps. Please post your questions here. There is a wealth of knowledge among our members and several of those in Australia may be able to provide more practical advice.

Regards,
Ruth

[layla g]

Thank you very much for your advice. Now I am in waiting list to go to Iran asap. Unfortunately she is very sick now. Her platelets are -4. The Dr in Iran started cytarabine(chemo) 3 days ago and we could not stop it. I do not think she will make it! I hate politics, I hate sanctions, who suffers? ????? people

[Ruth Cuadra]

I hope that you will be able to get to Iran without much delay. Cytarabine is most commonly used to treat acute myeloid leukemia (AML) so it does sound like your mother's disease has advanced rapidly. A platelet count of 4 is indeed critical but it is possible for people to survive at that level with good care and a little bit of luck. I wish both for your mother.

Regards,
Ruth