Paul,
Awesome news. I did an allo in May as well. I used tacrolimus instead of cyclosporin. I never really had a problem with GVHD. I had a skin rash for about 2 weeks in the Day +45 range. I am down to taking the minimum dose of tacro every other day. I know what you mean with all the drugs after the Allo - I am taking drugs to combat the side effects of other drugs I am taking.
You battled through the some times. Hopefully the donor immune system will make the myeloma a thing of the past. You deserve a long, drug free remission.
Thanks for the inspirational posts.
Mark
Forums
Re: A brief hello from Australia
Hi Mark,
As my doc said yesterday, "you've done it tough", but my graft was/is pretty hostile, it established itself quickly and I was through my ward time for the transplant in 3 weeks, when they decided to check my blood type at 60 days, I'd already switched from A+ to O+.
I had acute GVHD of the gut until about eight weeks ago and had a decent outbreak of rash on my torso and upper arms for about a month around five weeks post, suspected mild GVHD in the liver at a few points, mild GVHD of the eyes comes and goes, mild GVHC in the mouth comes and goes.
Also dealing with muscle spasms and arthritis attacks, but not 100% sure what the cause is. Still have GVHD protection via etanercept [Enbrel] injections and a moderately high dose of steroids, which I've been tapering down for a little over a month. Finally starting to get my ducks in a row though, so it's all good.
Glad it hasn't been too traumatic for you. It can be a bit of a battle if the graft goes nasty. With a little good fortune all will hold out nice and you and I will at very least get a lengthy remission. With all the drugs and genetic research being worked on at the moment, any time that can be bought will go further and further.
Best of luck to you mate.
As my doc said yesterday, "you've done it tough", but my graft was/is pretty hostile, it established itself quickly and I was through my ward time for the transplant in 3 weeks, when they decided to check my blood type at 60 days, I'd already switched from A+ to O+.
I had acute GVHD of the gut until about eight weeks ago and had a decent outbreak of rash on my torso and upper arms for about a month around five weeks post, suspected mild GVHD in the liver at a few points, mild GVHD of the eyes comes and goes, mild GVHC in the mouth comes and goes.
Also dealing with muscle spasms and arthritis attacks, but not 100% sure what the cause is. Still have GVHD protection via etanercept [Enbrel] injections and a moderately high dose of steroids, which I've been tapering down for a little over a month. Finally starting to get my ducks in a row though, so it's all good.
Glad it hasn't been too traumatic for you. It can be a bit of a battle if the graft goes nasty. With a little good fortune all will hold out nice and you and I will at very least get a lengthy remission. With all the drugs and genetic research being worked on at the moment, any time that can be bought will go further and further.
Best of luck to you mate.
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PaulG - Name: Paul
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2008
- Age at diagnosis: 29
Re: A brief hello from Australia
Hey Paul!!
So what is your cytogentic profile? Do you know? Are your multiple myeloma cells stroma dependent or IN dependent?
Just curious.
So what is your cytogentic profile? Do you know? Are your multiple myeloma cells stroma dependent or IN dependent?
Just curious.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: A brief hello from Australia
No idea, the myeloma was sequenced back in 2008 when I was newly diagnosed and it was all a hell of a lot to take in at the time, so that all went in one ear and out the other. Will go rummage through my info next time they let me play unsupervised down at the apheresis unit, or I'll ask my doc, whichever comes first.
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PaulG - Name: Paul
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2008
- Age at diagnosis: 29
Re: A brief hello from Australia
Hi Paul,
Give us some news.
How are you doing?
Wish u well
Give us some news.
How are you doing?
Wish u well
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
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