Hello,
Just looking for other people's experience with stopping maintenance. My mother in law is 4 months post maintenance of thalidomide and prednisolone and has such a bad cough to the point of almost vomiting from it. It's pretty much been since stopping above treatment.
All her nose swabs come back negative. Chest is very clear, etc. Oncologist doesn't really know what it could be.
So far on this journey, she has been one of the lucky ones in the trial. She has responded well to all treatment, including her stem cell transplant, and her paraprotein has been at 0 for a year now. 21 months ago at first diagnosis she was told 6 months was all she had, so she has come such a long way, and this cough/flu-like symptoms just worries me that it could mean things aren't so good.
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Re: Cough after stopping maintenance
Kriddy, I have had a terrible cough problem that resembles your mother's except that it started about two months into my induction treatment. I have written about my situation in earlier postings so I do not want to repeat. Suffice it to say that my oncologist and multiple myeloma specialist and nurses assert that they have never encountered a problem like mine. Neither have an gastroenterologist and two ENT specialists at Johns Hopkins. They put me on acid reflux meds for an eight week period to help them determine whether my problem is, in fact, caused by excess stomach acid. Six weeks into the regimen and my cough has gotten worse than ever.
I will say that my weekly dose of dexamethasone (40mg) seems to relieve the cough quite a bit for the following day and gives me some relief each Thursday night so I can sleep better. However, by Saturday morning the cough is back in full force.
Although my treatments thankfully have now brought me into complete remission as of the end of May, and I will be put on a maintenance regimen of Velcade every other week only, I am still concerned about this horrible cough. Velcade, as well as Revlimid, regardless of what my specialists have said, are known to cause cough. There is very little information about this in the internet literature.
Since I started multiple myeloma treatment, my eosinophil counts have been quite high. Nobody seems concerned about this. However, my most resent research shows that there is a kind of asthma that is associated with a high eosinophil count. Amazing. The way the doctors deal with cough- variant -asthma , which may be something else, (apparently no other symptoms except the chronic dry cough) is to prescribe a nasal corticosteroid (which may explain why my dexamethasone dosage once a week helps me quite a bit, but I do not yet know if there is a connection).
I have an appointment with an allergy/ asthma specialist in a couple of weeks. Perhaps he will help me resolve this issue once and for all. I should add that I have never suffered from any allergies or asthma all my life, but do understand that this could develop at any time.
I would very much appreciate your posting more from time to time and let me/us know about your mother-in-law's progress with this cough problem. It is not that misery loves company, but you may be able to provide good helpful information for the rest of the community.
I will say that my weekly dose of dexamethasone (40mg) seems to relieve the cough quite a bit for the following day and gives me some relief each Thursday night so I can sleep better. However, by Saturday morning the cough is back in full force.
Although my treatments thankfully have now brought me into complete remission as of the end of May, and I will be put on a maintenance regimen of Velcade every other week only, I am still concerned about this horrible cough. Velcade, as well as Revlimid, regardless of what my specialists have said, are known to cause cough. There is very little information about this in the internet literature.
Since I started multiple myeloma treatment, my eosinophil counts have been quite high. Nobody seems concerned about this. However, my most resent research shows that there is a kind of asthma that is associated with a high eosinophil count. Amazing. The way the doctors deal with cough- variant -asthma , which may be something else, (apparently no other symptoms except the chronic dry cough) is to prescribe a nasal corticosteroid (which may explain why my dexamethasone dosage once a week helps me quite a bit, but I do not yet know if there is a connection).
I have an appointment with an allergy/ asthma specialist in a couple of weeks. Perhaps he will help me resolve this issue once and for all. I should add that I have never suffered from any allergies or asthma all my life, but do understand that this could develop at any time.
I would very much appreciate your posting more from time to time and let me/us know about your mother-in-law's progress with this cough problem. It is not that misery loves company, but you may be able to provide good helpful information for the rest of the community.
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• Page 1 of 1
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