Revlimid and Strokes

[Christine M.]

Hi Everyone,
This is my first time to this site…after reading the postings re Revlimid, I thought I would let you know that my mother was diagnosed with CMML in November of 2006. Along with blood transfusions and weekly procrit shots her doctor started her on 5mg Revlimid and than to 10 mg. In May 2007 she was hospitalized with a stroke and conjestive heart failure. After 5 weeks in the hospital, she is now home. Her doctor wants to put her back on Revlimid, but she is really scared. We have an appointment at the City of Hope in a few weeks for a second opinion.

[CarolineG]

Hi Christine.

I’m sorry to hear about your Mother. Please let us know what they tell you at your next appointment. My Dad has CMML and Chronic Kidney Failure. I am trying to learn as much as I can.

Caroline

[JSRN]

My mother is afraid to start the Revlimid since she read about the side effects of blood clots.
At this point she is wanting to stop all treatments. She is tired of dealing with this disease.
Let us know what the second opinion tell you.

[Christine M.]

We never made the appointment for the second opinion because my mother had to go to the cancer center for a platelet transfusion. Our next appointment for the second opinion is scheduled for July 17th. Hopefully, we will be able to make that one.

On July 20th she is going to have a porta-cath (not sure of the spelling) implanted for her blood transfusions. After that, her doctor is going to start her back on 5mg Revlimid along with Coumadin to thin her blood. Last time, he did not prescribe the Coumadin. He ordered her Revlimid for 10mg a day, but in the 5mg capsules. I think he plans on playing around with the dosage a little, to see if he can jump start it to work.

We did discuss with the doctor about her going on Gleevec which is prescribed for patients with CML. I read somewhere it is used for CMML patients. He met with the Gleevec rep and the rep said the drug has good results for 80% of CMML patients with the 5q chromosome, which my mother does not have, in which case the results are poor. That is why he is going to stick with the revlimid.

Christine

[Christine M.]

Hi Everyone,

My mother had her second opinion today at the City of Hope Medical Group in Pasadena. We both really liked the doctor and she certainly would treat her condition more aggressively. She would not put my mother back on the Revlimid along with Coumadin, because her platelets are so low. Yesterday they were 16,000. She would put her on Dacogen and also talked to us about Vidazza. We talked about both these medications with her current doctor yesterday and he didn’t want to put her on these because they are stronger chemotherapy drugs with not much success.

Before we decide which medication and if she will switch doctors, the new doctor is referring her to the City of Hope Hospital for a Phase I Trial of GTI2040. Has anyone heard of this? Everything that I have read re CMML says, your best hope is to get into a clinical trial. We should hear from them within a week or so.

She also wants her to see a stem cell transplant specialist at the hospital. Early in her diagnosis we asked her current doctor about a transplant, because that seems to be the only known cure. He said she was too old and it would be too dangerous. The new doctor said COH will do transplants on older patients depending on health. My mother is 68 years old and before her CMML diagnosis, she has always been in good health. What is disappointing is since her diagnosis and treatments she suffered the stroke. So she would have to wait until she is fully recovered. The doctor still wants her to go meet with the specialist to see if this is possible in the future, so that they could start the procedure, looking for a donor, etc. The one thing we did learn today is that we should have gone for a second opinion earlier, especially because her health was much better.

Thank you to everyone for your responses and emails, they are really appreciated.

Christine

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