My name is Beth, and my 62-year-old sister was diagnosed with MDS - 5q minus - in May by a bone marrow test (ouch). She had symptoms including fatigue, low grade fever everyday since March and a 7 hemoglobin.
She started the Revlimid and has also received a few transfusions. The transfusions help for only a couple of days. After about a week on the meds she was itchy and had bumps all over. The doctor stopped it for a few days, then put her back on it with a steroid.
She's now been on it for 3 weeks and numbers are not going up unless she has a transfusion! She is still running fevers. Has anyone else had these symptoms? What can she do? They've also tried Procrit and it doesn't help!
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Re: My sister was diagnosed with MDS in May and started Revl
Dear Beth
I don't know much about MDS, and in fact am a cancer newbie myself, having been diagnosed with multiple myeloma just last March.
The first thing my oncologist put me on was Revlimid. I do know that skin irritation/rashes are a known side effect. I also needed transfusions, and, just as in your sister's case, they only worked for a few days or a week. I have not had Procrit, but my doctor told me that it does not work instantly, and so perhaps she has not been on it for long enough. Low grade fevers also can occur on Revlimid, and I did experience that.
The one thing I can tell you is not to give up hope. It sounds like your sister is still in the early days of her treatment, and her doctor may need to tweak her meds before things improve. If you and she have confidence in her doctor, give him or her more time to adjust the treatment. And it is always a good idea to get a second opinion.
Good luck and don't despair!
Rob
I don't know much about MDS, and in fact am a cancer newbie myself, having been diagnosed with multiple myeloma just last March.
The first thing my oncologist put me on was Revlimid. I do know that skin irritation/rashes are a known side effect. I also needed transfusions, and, just as in your sister's case, they only worked for a few days or a week. I have not had Procrit, but my doctor told me that it does not work instantly, and so perhaps she has not been on it for long enough. Low grade fevers also can occur on Revlimid, and I did experience that.
The one thing I can tell you is not to give up hope. It sounds like your sister is still in the early days of her treatment, and her doctor may need to tweak her meds before things improve. If you and she have confidence in her doctor, give him or her more time to adjust the treatment. And it is always a good idea to get a second opinion.
Good luck and don't despair!
Rob
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
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