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Old Mon May 6, 2013, 10:02 AM
MDSPerth MDSPerth is offline
Join Date: Sep 2012
Location: Perth, Western Australia
Posts: 74
Acute GVHD if the skin

Hi all
My partner Paul underwent a MUD SCT on 4 April and by all accounts was having a good run, being released from hospital by day +16.

Without going into the story in too much detail, unfortunately he was readmitted on day +23 with high a temperature.

His temperature at times peaked at over 40 degrees. During this time he began getting a red raised rash over his head - now bare from chemo. The rash merged together to become really angry total redness and moved down from his head to his face and has worked it's way down his complete body. The heat generated from his body was just like standing next to a heater.

He was on several types of antibiotics but showing no response for about 4 or 5 days. Because he was not presenting in the typical GVHD manner (nothing on hands and feet at that stage) they needed to rule out infection before starting steroids. We were told that steroids can aggravate infection?

We now know that he has acute GVHD of the skin grade 4. His skin is blistered and the blisters are bursting and his skin is peeling off. And i dont just mean little blisters. It continues to work its way down his body joining up from being a rash to a complete covering. It's in his mouth, throat and his eyes are so bad.

The hospital staff are so good trying to make him comfortable and come out the other side. He is on intravenous steroid dose of a now increased 200mgs and he has committed to a trial for mesenchymal stromal cell therapy (MSC) of which he has has one transfusion.

It takes me all my efforts not to burst into tears when I see him. Have any other SCT readers suffered such servere GVHD of the skin and come out the other side. I would appreciate hearing your story to grasp some hope from.

Tonight they were also xraying his chest and taking samples because he his rumbly and coughing up mucus.

Paul has a blog. middysmarrow.wordpress.com

If there is a positive here, his blood counts are excellent!

Sandi, partner of Paul 62, diagnosed MDS Intermediate 2; July 2012. Pancytopenia, Cytogenetics -7 +8 Chromosomes. Low Blast cell count. Currently on EPO & G-CSF and having great response. MUD found will be admitted to Royal Perth Hospital 27 March 2013 to start SCT process.
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Old Mon May 6, 2013, 08:32 PM
Cheryl C Cheryl C is offline
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
So sorry to hear that Paul has severe GVHD. I've been following his case, especially as there aren't too many of us from Oz on the forum. My thoughts and prayers are with you both.
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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Old Mon May 6, 2013, 08:55 PM
Cam Cam is offline
Join Date: Oct 2012
Location: Jacksonville, Florida
Posts: 88
I hope they get it under control. I had that too but not as bad and it was treated with prednisone. I do not like prednisone, it has some nasty side effects...
Cam, BMT 12/6/12 for MDS, diagnosed August 2012 beat it in December 2012
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Old Sat May 11, 2013, 12:36 AM
Scarlett O. Scarlett O. is offline
Join Date: Mar 2013
Location: Canada
Posts: 6

What Paul is going through sounds like such a nightmare. I am so sorry. I was really rooting for you guys because I thought you had so much courage to go through a transplant at age 62. I already know I don't have that kind of courage. I hope things will improve soon.

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Old Sat May 11, 2013, 01:01 AM
MDSPerth MDSPerth is offline
Join Date: Sep 2012
Location: Perth, Western Australia
Posts: 74
Originally Posted by Cam View Post
I hope they get it under control. I had that too but not as bad and it was treated with prednisone. I do not like prednisone, it has some nasty side effects...
Thanks cam, as strange as it may seem, the effects he gets from his cyclosporine and steroids have become secondary to what he is going through. Nobody could ever have prepared us for this dose of GVHD.

He describes to like when we were in Croatia a couple of years ago, unsuspectingly we drove into a tunnel. The tunnel went on and on like it was never going to end. Eventually six kilometres later we reached the other end.

Lets hope this is the case. The doctors can tell us very little because everyone responds differently and there are so many variables.

Paul has committed to a trial of MSC (something like mescal stromal cells) he has now had two doses - google it.

As far as consultants go, you name it they are in and out of his room day in day out.

Hope your recovery is improving cam. Just like Paul you have shown so much resolve to overcome the odds.

Thanks Cheryl and scarlet. Scarlet when an otherwise healthy person (MDS aside) is give an opportunity to extend there life, it is human nature to clutch at it with both hands - as I said to Cam nobody could have prepared us for this.

I must add in all this Paul's blood counts are incredibly good. So good they never even get a mention. The new cells are certainly doing there job, just too well!
Sandi, partner of Paul 62, diagnosed MDS Intermediate 2; July 2012. Pancytopenia, Cytogenetics -7 +8 Chromosomes. Low Blast cell count. Currently on EPO & G-CSF and having great response. MUD found will be admitted to Royal Perth Hospital 27 March 2013 to start SCT process.
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Old Sat May 11, 2013, 01:33 PM
sbk007 sbk007 is offline
Join Date: Apr 2013
Location: NY
Posts: 322
Wishing Paul all the best. Sounds like he is getting the best of what is out there from his team. Seems like MSC's offer great promise and optimistic that's the case here, if you are so inclined you can read about what these cells do. Best of all there's evidence to back up its tissue regenerative capabilities.:

I have been watching your posts & following his blog because my diagnosis and category matches Paul's.
My docs want me to walk the same street as Paul's and when I had my physical I got the same call from my doc
and my response was the same as Paul's. I ask myself the same "is it worth it questions". When they throw the word cure in there and you look at the alternatives its hard to say no. Take care of yourself. Its often harder on the caregiver than it is on the patient.

Last edited by sbk007 : Sat May 11, 2013 at 01:52 PM.
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Old Sun Feb 9, 2014, 08:45 PM
Mustafa Kul Mustafa Kul is offline
Join Date: Feb 2014
Location: Turkey
Posts: 1
Hi, MDS perth

Its been a while since your last post and I really am curious as to how Paul is doing ? My younger brother diagnosed with severe acute gvhd after BMT. My sister was the doner and was a very good match. My brother aged 30. They've realesed him from hospital I think on +16 day and he was back 4 days after with skin rashes and later diagnoised with severe gvhd. (September 16th, 2012). He had severe dhiarria and had his guts infected and burnt. He had temp. More than 40 for a week and developed infections. CMV and a few more. They gave him the standard treatment and when there was no response and drug for 4 days. This drug could only be given 4 times. He showed improvement after this second drug for a week and then everything started going bad. Really bad. He had kidney problems and his liver was not working properly either all due to drugs. All medications was stopped on 18.12.2012 and he passed away on 20.12.2012

This is one terrible disease both for the patiante and people around them. He had the treatment in Sydney. I am not sure if people are having better treatments with this in other countries. Its been 15 months since his death and I am still checking on internet with people with gvhd. I hope Paul had luck and is ok now.

All the best.
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Old Sun Feb 9, 2014, 10:57 PM
Heather8773 Heather8773 is offline
Join Date: Jan 2013
Location: Houston, TX
Posts: 254
Mustafa I'm sorry about what happened to your brother. I hope that you and your family are doing as well as y'all can after his passing.
Unfortunately Paul passed on June, 3 2013. I've attached below Sandi's message from June 4, 2013

Originally Posted by MDSPerth View Post
I know there are so many positive stories out there on the forum and I so wish with all my heart that was to have been the case for Paul.

But with deep sadness I advise that my beautiful brave Paul, loved by so many passed away on day +60, the 3rd of June.

Paul was the recipient of very very cruel GVHD of the skin (grade 4) and was readmitted to hospital on day +23. He battled so hard and his skin recovered remarkably well in a lot of areas. He even fought off the MRSA bacteria during this time. This did leave him very weak and he lost 13kgs which he could ill afford to do.

Over the weekend he was allowed home visits for three hour each afternoon. The first afternoon we had coffee at some friends for old time sake as they were about to relocate. On Sunday despite the fact that he was extremely tired I bought him home which after 5 weeks of hospitalisation he was very excited about. He could only summon up the energy to sit on the couch and then headed off to bed to have a rest before heading back to the hospital. When he got up he went to he bathroom and then collapsed on the bathroom floor.

I had to phone an ambulance. In hospital he fought like crazy, but his body was just fast shutting down.

His consultant phoned me this morning to arrange to see me. He was at that stage totally bewildered because the speed of Paul's demise is quite uncommon. All his blood tests in the morning were good including his infection markers. Blood samples have been sent to microbiology to see if there was some undetected micro organisim that could have caused this tragedy. But even if they find something it will not change this dreadful outcome.

The nurses on the BMTU loved Paul, and were always telling me what a gentleman and a model patient he was. Everyone who knew my darling Paul loved him and he will just be so sadly missed. Paul had a blog and in the last two days he has had over 2,200 hits.

He took a high risk going to transplant, trying to buy us some extra time on his 62 years - unfortunately for all of us he was not one of the lucky ones. The world will be a much sadder place for us with him gone.

Good luck to everyone of you transplant recipients out there and good luck to all you folk with MDS that just have to live with this insidious illness.
Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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