[JBarnes]

Re: Severe side effects of dex (dexamethasone)?

by JBarnes on Tue Mar 04, 2014 3:34 pm

Ed, If you are in that much discomfort with the dex then pull the plug on it and see what happens. You can always go back on it at a later date. But, it would seem to me that your reaction to it is so severe that other drugs such as Velcade may be a better choice.

Your m-spike is still rather high so you need to stay on maintenance but give the Revlimid a try and see if you can keep the demons at bay.

I've been on maintenance for over a year now and my numbers do jump around month to month but overall are trending slightly down. This seems to be pretty typical for those of us that did not reach CR after transplant. Which by the way my transplant doc in Denver told me only 20% of their patients actually see CR after transplant. So we are not alone. Jerry.

[genk]

Re: Severe side effects of dex (dexamethasone)?

by genk on Wed Mar 05, 2014 6:17 am

Good news. I called my oncologist yesterday and told him about my latest episode with dex. I had many times in the past requested that I be taken off the steroid, but he had always asked me to try to keep taking them. I fought hard the last 18 months to tolerate them and as stated before I suffered greatly.

I laid it out to him again yesterday and he finally gave me his blessing to stop the steroid. I asked him if I stopped the steroid did he think the cancer would go wild right way. He told me he did not think that was going to happen since I am on the prescribed dose of Revlimid.

Now I will see how much of my poor quality of life is from the steroid. I will keep you all informed as all develops.

Thank you for all your comments.

[darnold]

Re: Severe side effects of dex (dexamethasone)?

by darnold on Sun Mar 09, 2014 2:49 pm

Hi Ed. Do you know whether your myeloma is high risk or not? Being high risk could be one reason to take dex with the Revlimid.

I am not high risk. I took Revlimid for 2 1/2 years as my maintenance drug after my SCT. I had a very hard time with it. Also, after 2 years I began to show a very small M-spike again. We finally stopped the Revlimid a year ago. My M-spike has been creeping up very slowly -- .01 per quarter. At this rate, it'll be years before I'm in the smoldering or cancerous range. I'd rather be off the Revlimid and deal with the slowly building cancer cells. By the way, even after a year off of Revlimid, my white blood counts are still below the low end of the normal range but my red blood counts are in the normal range.

Dana