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Re: A brief hello from Australia

by Mark on Thu Dec 01, 2011 11:50 pm

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

Mark

Re: A brief hello from Australia

by PaulG on Fri Dec 02, 2011 3:16 am

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.

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

by suzierose on Fri Dec 02, 2011 4:08 am

Hey Paul!!

So what is your cytogentic profile? Do you know? Are your multiple myeloma cells stroma dependent or IN dependent?

Just curious.

suzierose
Name: suzierose
When were you/they diagnosed?: 2 sept 2011

Re: A brief hello from Australia

by PaulG on Fri Dec 02, 2011 6:57 am

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.

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

by Lin on Sat Dec 03, 2011 4:47 pm

What a story. The very best to you. Lin

Lin

Re: A brief hello from Australia

by Maro on Mon Oct 06, 2014 7:17 pm

Hi Paul,

Give us some news.

How are you doing?

Wish u well

Maro
Who do you know with myeloma?: My mom
When were you/they diagnosed?: March 2014
Age at diagnosis: 63

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