[Tori]

Stopping thalidomide due to low platelet counts

by Tori on Tue Jul 15, 2014 6:53 pm

My doctor has just informed me that I have to take a month off my thalidomide treatment.

One month after starting the medication, my platelet count started to drop severely and I have had two treatments of IVIG with no success. They now want to remove my spleen but have to wait until I am 6 months post auto transplant, which is another 2 months

They now want to see if the thalidomide is the cause of my low platelet count, which sometimes is as low as 11.

Would love to hear from anyone who has stopped taking thalidomide. Did you have any side effects? Did your myeloma progress?

I am very anxious about stopping the medication as, apart from my low platelets, all my counts have dropped and I have had a great response from the thalidomide.

[Nancy Shamanna]

Re: Stopping thalidomide due to low platelet counts

by Nancy Shamanna on Tue Jul 15, 2014 11:16 pm

Hi Tori, I am sorry that you have low platelet counts on thalidomide.

When I took Revlimid, which is in the same family of drugs, my platelet counts would also drop. I was delayed in starting Revlimid cycles more than once by a week or more. Once I took a delay because I was on vacation and just wanted a short break from Revlimid.

It didn't matter in the long run. In fact, I was able just to carry on with treatments after a short delay. Hope this works for you also. Probably you would still be getting blood tests to check on your progress though? Hope that helps.

[Kaew]

Re: Stopping thalidomide due to low platelet counts

by Kaew on Wed Jul 16, 2014 1:50 pm

Hi Tori,

I'm on Revlimid 10mg as a maintenance for 16 months now. My platelets count is usually in the 50s. One time it dropped to 37. I have to stop Revlimid for a week for it to come up above 50, and then resume the medication.

It's been liked this the whole time. My ANC is also very low, so many times it dropped below 1. So it like stop & go situation.

Good luck to you