I have a question regarding the weekly use of dexamethasone with the Revlimid.
What is the purpose of the dex?
My oncologist is not exactly forthcoming with information, and I am very frustrated. I have been on 21 days of 25 mg Revlimid and a weekly dose of 20 mg of dex since December 2014. I just realized that I have been mildly ill with a sinus infection by the second week of each cycle. Got a germ in February and I became severely ill with sinusitis, then bronchitis, and ultimately pneumonia.
I was on antibiotics for almost 4 months. At the end of May, my white counts were low. I asked if being on antibiotics for so long could have contributed to this. No response, just hmm and haw. I stopped Revlimid for a month and continued getting labs. My Revlimid dose was decreased from 25 mg to 10 mg.
Another sinus infection started up in late August and, after 6 days on antibiotics, I was 95% better. Then came dex day. Within an hour, I got a severe dizzy spell that lasted 30 hours (about how long the dex is in my system). The sinus infection kicked back in by morning.
Curiosity made me start searching for answers, and I was not pleased with what I found. The oncologist didn't mention (1) that I will be even more susceptible to upper respiratory infections than I already was, and (2) that the dex was weakening my already-weak immune system every time I took it.
Tests show that the regimen is improving my numbers, but I cannot function being constantly sick. I am so angry right now that I could spit nails. I have to see the oncologist this week, and I may not be able to be civil.
Any ideas?
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Mona Dee - Name: Mona Dee
- Who do you know with myeloma?: self
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 59
Re: Purpose of dexamethasone in myeloma treatment regimens?
Dex relieves some pressure in the case of a bone plasmacytoma and myeloma cells allegedly don't like dex. Others may have some more explanation on uses.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Purpose of dexamethasone in myeloma treatment regimens?
Hi Mona,
I understand your frustration with dex. For many of us, the side effects of dex are more difficult than those of other drugs, such as Revlimid and Velcade. The reason for dex is to increase the effectiveness of the other drugs. Your oncologist was correct in prescribing dex for you, but it's also important to address the sinus infections. I wonder if your oncologist would recommend and work with an ENT to develop a solution?
Of equal concern is your relationship with your oncologist. It's important to be able to ask questions and receive clear answers to your concerns. Perhaps a calm but frank discussion with your doctor could result in a fresh start if he/she is made aware of how you feel.
Are you seeing a myeloma specialist? If not, a consult with a specialist could be very valuable.
With best wishes that you'll feel better soon and find a solution that works well for you.
I understand your frustration with dex. For many of us, the side effects of dex are more difficult than those of other drugs, such as Revlimid and Velcade. The reason for dex is to increase the effectiveness of the other drugs. Your oncologist was correct in prescribing dex for you, but it's also important to address the sinus infections. I wonder if your oncologist would recommend and work with an ENT to develop a solution?
Of equal concern is your relationship with your oncologist. It's important to be able to ask questions and receive clear answers to your concerns. Perhaps a calm but frank discussion with your doctor could result in a fresh start if he/she is made aware of how you feel.
Are you seeing a myeloma specialist? If not, a consult with a specialist could be very valuable.
With best wishes that you'll feel better soon and find a solution that works well for you.
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• Page 1 of 1
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