Transplant center with best outcome against GVHD

[Relentless Against SAA]

Originally Posted by Rea

I (mostly my kidneys) did not handle the Tacro well and eventually (day +84) I was transferred to Cyclopsorine. Like many others I get Migraines and High Blood Pressure with Cyclo, but I'm handling it better than I was the Tacro.

Rea,
Are the docs monitoring your magnesium levels? Cyclosporine in known to decrease your magnesium levels. This can be the reason for the migraines. I know of people who have very good success preventing the migraines by taking hefty doses of magnesium.

[Rea]

Oh thanks for checking! Yea I had the magnesium problem too, last year I was on 1,000mg, 3x a day and it barely got me to the bottom level. Also, I have an intolerance to the IV mag so that really wasn't an option for me.

My magnesium level is doing much better now and only take 250/day. I'm not on a normal therapeutic dose of cyclosporine anymore, a bit lower. Because of the migraines and that I haven't experienced GVHD so far.

I've had several MRIs to check for blood clots (bc of the PNH pre-transplant) and PRES- all negative!

I had a nice stretch that was migraine free, but they've popped up again the last few weeks. Much milder though, without the vomiting and severity they were before.

PS another note about Migraines, for me personally sometimes they were an effect of a "hemolytic" (not a technical usage) event...I would get a migraine and then we'd find out my hemoglobin had dropped a couple of grahams within hours - so the migraine was an effect of the heavy hemolysis from the PNH.

[summerdrake]

I also had my transplant done at the ohio state james cancer hospital in columbus. every doctor and nurse truely had my best interest in mind. my transplant was on june 7 of this year and im going once a month now.

@rea- 100% At Day 29? thats amazing. im almost there. was 94% last visit

[Rea]

@summerdrake - awesome! I agree, OSU definitely has one's best interest in mind, and they really listen. No matter how crazy the prednisone made me : )

Glad you are doing well!

[Shana]

Originally Posted by Rea

@summerdrake - awesome! I agree, OSU definitely has one's best interest in mind, and they really listen. No matter how crazy the prednisone made me : )

Glad you are doing well!

Hi Rea, I am trying to figure out how to private message you and failing. I am going to OSU James hemotology center so I wanted to contact you about it.

Thanks!

Shana

[triumphe64]

Originally Posted by Shana

Hi Rea, I am trying to figure out how to private message you and failing. I am going to OSU James hemotology center so I wanted to contact you about it.

Thanks!

Shana

Click on Rea's name and an option will come up to send a private message.

[Rea]

Originally Posted by Shana

Hi Rea, I am trying to figure out how to private message you and failing. I am going to OSU James hemotology center so I wanted to contact you about it.

Thanks!

Shana

Hi Shana,
I'd be happy to answer any questions. I tried to send a private message as well, but it looks like you have that disabled at the moment. Here's how to turn them on:
> My settings (first menu item in the horizontal gray bar, on any page)
> Edit options (a menu item on the left side)
> Check Enable Private Messaging (scroll down, under Messaging & Notifications)

And that should do it!

[rohit]

Originally Posted by creehill

My husband underwent the HAPLO MUD transplant on September 13th at MDA just 9 months after a auto transplant. He had double hit lymphoma and had a recurrence of disease within 2 months of suto transplant. He received the 1/2 match cells from his brother on the 20th. Within a week he had catastrophic organ failure beginning with kidney failure resulting in his lungs filling with fluid. We ended up in ICU on the 1st of October. Each day his levels decreased and infections increased. He picked up a bacteria infection and a fungus in his lungs. His kidneys never recovered while intibated he suffered 2 strokes and a heart attack. I removed him from life support on the 17th and he passed away on the 18th.

please research and ask as many questions as you possibly can The HAPLO is very new and in the last 2 years they have added 4 days of high dose therapy post transplant cells. My husband was only 47 years old and in complete remission of a very aggressive and rare disease. We found out after his passing that the chemo caused serioud damage to his organs and his D-Driver level for clotting was over 16.37 normal is under 0-2.

This has been the hardest journey of my life. We asked so many questions

I am praying for your family

Dear Creehill
my son has to get a haplo from his mother in august from M D Anderson.
we are really scared and have contemplated to forgo the transplant.
could you please give us some advise.

[Ninanna]

Hi. I have been perusing these forums for a while, but haven't posted as my situation is a lot different from most. However I feel like I can maybe offer an experience and some information that can help.

I had kidney failure and needed a kidney transplant. I live in Baltimore, so of course I went to Hopkins. Anyways, long story short, I ended up in a trial that combined a mini (non-myleoblative) halpo BMT with a kidney transplant. Both the kidney and the marrow were from my wonderful mother. The idea behind it is I will hopefully not need life-long immunosuppressants for the kidney, since my new immune system will recognize the kidney as self.

I had the double transplant on Feb 4th 2014. I did get acute grade II skin GVHD that was successfully treated with high dose prednisone. For the haplo transplants they use high dose cytoxan on day 3 and 4 post to limit the effects of GVHD, and have had good results with it.

I also saw someone mention Prochymal for the treatment of GVHD. I actually happen to work for the company that developed it. It is only approved in Canada, but has been fast tracked by the FDA in the US. It is available in the US to children right now as a last resort. At the end of 2013 my company sold Prochymal to Mesoblast. It has been successful at treating GVHD, but it is not a miracle drug and doesn't work for everyone.

[GoodDay5150]

I had an allo mud mini trans 2.5 yrs ago for PNH. No AA or any other disease. My GVHD has not been very severe compared to some pics that I've seen. I was told by the trans co-ord nurse that my match was as good as they were going to get. But I've also been told that GVHD is hit or miss regardless. Obviously having good med ppl treating you helps as well. Some peeps have basically no GVH, and I've been told that most dr's actually like to see a little bit of GVHD. I have some minor skin rash, dry eyes, a few slightly more severe rash spots that left small scars, but nothing too severe. It beats the alternative!!! I had some episodes b4 I was diagnosed where I shld have been hosp, so I was all abt getting treated/cured asap. Good luck to evryone