Hi Laura,
Congrats on getting off the immunosuppression. It is definitely nice to start taking less drugs as opposed to more!
If you do not mind my asking, what ended up happening with the Revlimid after you started it up again? Are you still on it? Hopefully your getting off the immunosuppression means you are not having any GVHD problems. I had sore gums and a mild skin rash for one month after I got off the Prograf.
Mark
Forums
Re: Husband diagnosed at 43
Hi EF11,
Please keep us up to date on how things go. I am always curious how other younger patients progress.
Mark
Please keep us up to date on how things go. I am always curious how other younger patients progress.
Mark
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Mark11
Re: Husband diagnosed at 43
I will absolutely post back with progress as I have found the Beacon so helpful, and, once we are well on our way, I want to be able to help others as they embark on this trail.
As an interim update, my husband went in to the hospital today for IV fluids since he has not been feeling well for a couple days. His main complaint was shooting pain in his upper legs. The doctor says it's likely myopathy from the steroids and / or neuropathy from the Velcade. They will alter his cycles from 3 weeks (2 weeks on, 1 off) to 4 weeks (3 on, 1 off); with Velcade down from twice to once per week, Revlimid down from 25 mg to 15 mg; and dex from 40 mg to 20 mg. I am looking very forward to (hopefully) some more energy and less crabbiness!
His doctor thinks that, probably after one more cycle (his fourth), we will go to harvest and likely ASCT in mid March.
The 'new normal' has been particularly challenging with young kids! We try to keep them somewhat sheltered from the seriousness of this disease, as they are young to take on the burden of the stress and anxiety. It has also been a struggle to keep up with the busy routines of a household and two full time working parents, one with myeloma -- I'm drowning in laundry! But I believe I hired some extra help today which hopefully will help get this sinking ship back afloat.
Healthy wishes to all.
As an interim update, my husband went in to the hospital today for IV fluids since he has not been feeling well for a couple days. His main complaint was shooting pain in his upper legs. The doctor says it's likely myopathy from the steroids and / or neuropathy from the Velcade. They will alter his cycles from 3 weeks (2 weeks on, 1 off) to 4 weeks (3 on, 1 off); with Velcade down from twice to once per week, Revlimid down from 25 mg to 15 mg; and dex from 40 mg to 20 mg. I am looking very forward to (hopefully) some more energy and less crabbiness!
His doctor thinks that, probably after one more cycle (his fourth), we will go to harvest and likely ASCT in mid March.
The 'new normal' has been particularly challenging with young kids! We try to keep them somewhat sheltered from the seriousness of this disease, as they are young to take on the burden of the stress and anxiety. It has also been a struggle to keep up with the busy routines of a household and two full time working parents, one with myeloma -- I'm drowning in laundry! But I believe I hired some extra help today which hopefully will help get this sinking ship back afloat.
Healthy wishes to all.
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EF11 - Who do you know with myeloma?: husband
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 43
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