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Please introduce yourself to other readers. We would like to hear your story.

Re: My story

by Jean Ruth Howard on Fri Sep 26, 2014 2:38 am

Hey Aussiegirl,

My husband is on the elotuzumab trial as well. He hasn't had any side effects from the elotuzumab, only from the Revlimid. His myeloma markers are coming down!

Jeannie

Jean Ruth Howard
Name: Jeannie
Who do you know with myeloma?: husband
When were you/they diagnosed?: November 2012
Age at diagnosis: 47

Re: My story

by aussiegirl on Sat Sep 27, 2014 11:53 pm

Jeanie

What side effects does your husband have from the Revlimid? I had been doing well, but today felt quiet unwell. Not nauseous, but pain in ribs, hot and achy, low blood pressure.

aussiegirl

Re: My story

by Jean Ruth Howard on Mon Sep 29, 2014 1:46 am

He's had flu-like symptoms, definitely hot and achy sometimes. He's also had back pain, occasional diarrhea, little bit of nausea (but not much), an itchy head (although that seems to have subsided), back pain, all over body rash, and a blood clot in his left calf. His blood pressure is ok.

Jean Ruth Howard
Name: Jeannie
Who do you know with myeloma?: husband
When were you/they diagnosed?: November 2012
Age at diagnosis: 47

Re: My story

by aussiegirl on Mon Sep 29, 2014 1:18 pm

Jean,

Does your husband continue to have these side effects or was there a settling-in-time frame?

aussiegirl

Re: My story

by Jean Ruth Howard on Tue Sep 30, 2014 1:17 am

Hi Aussiegirl.

My husband is in his third cycle. During the first and second cycle, he had the body rash and flu-like symptoms and weakness. By the third cycle, the rash went away and the flu-like symptoms and weakness have lessened. His treatment day is on a Tuesday and he also takes dex on that day. He feels that the dex counteracts side effects that he might otherwise be feeling. Usually by Saturday (about 5 days after the steroid) he develops diarrhea for one or two days and he tends to feel weaker and more achy during that two day period. Then by Monday he seems to come out of it and has more energy without any other symptoms.

Best,
Jeannie

Jean Ruth Howard
Name: Jeannie
Who do you know with myeloma?: husband
When were you/they diagnosed?: November 2012
Age at diagnosis: 47

Re: My story

by aussiegirl on Sun Oct 12, 2014 1:38 pm

So in the 3 weeks between ending my old regimen and starting the new one, my myeloma raged on with a vengeance. I now have lesions in spine, hips, neck and ribs. All this in such a short time. I have now had three treatments and the back pain has subsided but won't have any tests for another two weeks to get lab results.

I'm finding the mood swings hard to live with. I don't want to be near me, so how can I expect others to want to be near me?

What I'm finding the most difficult to deal with is that, for nearly 12 months, I was good -- no pain, not many restrictions, life went on. Now it seems that every week something I love doing is taken away from me. No more snow skiing, no more tennis, no more gym workouts, staying away from crowds, etc etc. Now I find out travel insurance is hard to get so there goes anymore overseas trips, no more sitting in the sun, no more snorkling. Just waiting for the day when I can't wear high heels anymore and have to wear "sensible shoes".

aussiegirl

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