My husband has been on 25 mg of Revlimid with dexamethasone for three months. The result is the M-spike has disappeared. The Revlimid dose remains the same, but the steroid has been reduced by half.
My husband is confused and frustrated that he remains in a great deal of pain in the ribs and spine, is breathless with any slight activity, and constantly fatigued. We don't understand why, if the M spike has disappeared, the symptoms are getting worse. Is it the drugs? Is this normal?
We live in France and find it very difficult to get support and answers to our questions.
He also gets blood coming from his nose – not a full nosebleed, but drops. He has emailed his specialist, but he never receives a speedy reply. He is definitely worse and I am very concerned.
I hope you can help with some answers. Thank you.
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Re: M-spike is zero, but symptoms are still there
Hi Misha,
First, what are his serum free light chain values doing?
If he is experiencing pain in his ribs and spine, has he been recently imaged (MRI, PET/CT, etc)? One can still experience multiple myeloma related bone damage while in "complete remission" (that is, with no M-spike and normal serum free light chain values). That's why it's important to get imaged from time to time, ESPECIALLY if that patient is experiencing bone pain. You may want to follow the links through this thread:
"Can bone lesions develop with no M-spike?" (started July 17, 2014)
In particular, note this explanation in one of the discussions mentioned in the above thread.
You also say he is fatigued. How are his hemoglobin, red blood cell (RBC) and hematocrit levels doing? (please include units of measure and normal reference ranges)
Some of the side effects he is experiencing (fatigue, shortness of breath) could be due the Revlimid / dex regimen, but you should also eliminate multiple myeloma itself as a possible cause. In any case, these drugs shouldn't be causing bone pain. You might find this thread to also be insightful:
"Shortness of breath - common Revlimid side effect?" (started Oct 2, 2014)
First, what are his serum free light chain values doing?
If he is experiencing pain in his ribs and spine, has he been recently imaged (MRI, PET/CT, etc)? One can still experience multiple myeloma related bone damage while in "complete remission" (that is, with no M-spike and normal serum free light chain values). That's why it's important to get imaged from time to time, ESPECIALLY if that patient is experiencing bone pain. You may want to follow the links through this thread:
"Can bone lesions develop with no M-spike?" (started July 17, 2014)
In particular, note this explanation in one of the discussions mentioned in the above thread.
You also say he is fatigued. How are his hemoglobin, red blood cell (RBC) and hematocrit levels doing? (please include units of measure and normal reference ranges)
Some of the side effects he is experiencing (fatigue, shortness of breath) could be due the Revlimid / dex regimen, but you should also eliminate multiple myeloma itself as a possible cause. In any case, these drugs shouldn't be causing bone pain. You might find this thread to also be insightful:
"Shortness of breath - common Revlimid side effect?" (started Oct 2, 2014)
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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