Transplant center with best outcome against GVHD

[Relentless Against SAA]

Currently the best donor matches for my son are two 9/10 matches. Our transplant center has checked 13 of the 75 possible donors. They give me the impression they would like to stop looking. I have heard that John Hopkins is having great success with Haplo transplants with little GVHD. I kind of find this too good to be true. I guess I wonder if this were true why wouldn't everyone have their transplant there? Does anyone know of a website that compares results of transplant centers? We live 12 hours away from John Hopkins.. should I call there to get info or stay closer to home? We have several transplant centers approx 2.5 hours away.

[Whizbang]

Ra saa, you should be looking at centers that do the above... By eliminating T-cells, a significant GVHD factor is iliminated...

Best of luck and God bless...

There is also ST2 gene testing being done to predict GVHD....

[Neil Cuadra]

Originally Posted by Relentless Against SAA

Does anyone know of a website that compares results of transplant centers?

At the the National Marrow Donor Program website you can use the U.S. Transplant Center advanced search tool to find centers that do SAA transplants in a given state. Then click on each center to go to a page with statistics about the number of transplants and (slightly out-of-date) survival statistics. For example, for Johns Hopkins you'll come to this page with related and unrelated donor statistics from 2008 to 2010. But you probably have to talk to the specialists at a given center to get the latest facts about their treatment approach and the haplo choice.

[sbk007]

bethematch.com (Operated by National Marrow Donor Program ). Has an extensive list of survival rates by disease type at each center. Unfortunately they're one year survival rates. I couldn't find 2,3,5 year survival rates or anything more than that one statistic. No stats for gvhd or anything else for that matter.

Your son is young. Young adults seem to have fewer complications.There is a member on here who's son had a 9/10 match and he had no GVHD came through nicely and you'd never know he had the transplant.

You have nothing to lose by calling Johns Hopkins and for BMT you want the odds in your favor and the best hospital possible so staying close to home is a personal decision but if your odds are better 12 hours away...

All the best

[DanL]

I am missing my resource here, but seem to recall that about 80% of the relapse and TRM are going to happen within the first year after transplant, with 95% happening within 2 years, which may be why the statistics aren't really available beyond 1 year. I reviewed a couple of charts which seemed to confirm that I was on the right track here.

The T-Cell depletion is still considered a bit of a controversy in the medical community as the gain in GVHD reduction is offset by the GVL effect reduction.

As Whizbang noted, the identification of the ST1 or ST2 protein seems to be an important development, and may be worth asking your transplant doctor about. Increases in this protein have been correlated as an early predictor of GVHD and may allow your transplant team to take a stronger, more proactive approach to fighting GVHD. I just don't know how widespread or available the testing is for this just yet, but it is a great question to ask.

As with most matters related to bone marrow failure, it is really important to have a good team of doctors that you trust, and to feel free to seek second opinons, or third opinions until you are comfortable with the process, and the ability to seek additional treatment options if needed.

The doctors that I have spoken to generally agree that a little bit of GVHD is not a bad thing, but also that it is very important to avoid the grade III and IV if possible, so catching it early is key to managing it effectively.

[sbk007]

I don't think you can test for the protein before transplant. I think after transplantation they can test for it as an early indicator. That's the way I read it.
Not only is there t-cell depletion controversy(because although you might avoid gvhd, it might increase the risk of other things) but also the method used to deplete the t-cells is controversial. There's one drug called Prochymal that's approved in CD but I cant find much info on the clinical trials here.

[Relentless Against SAA]

Thank you for your answers. We are facing some very difficult decisions. We have encountered complete opposite opinions regarding the SAA from top docs in our area... transplant now, don't wait for any complications vs avoid transplant at all cost unless absolutely necessary....... we have also had different opinions on what meds to use for refractory SAA.... There are not any treatment plans with guaranteed success or even great odds in our favor. I know that some have walked away from a transplant feeling great but many many many more have gvhd.
Question:

I wonder if there is a survey regarding quality of life after a transplant??

My understanding is that Leukemia patients benefit from some gvhd (to assist in the fight against Leukemia) but SAA patient with slight PNH clone do not benefit from any gvhd. Am I thinking correctly?

[sbk007]

I am sorry you have to go through this.

There are no stats or surveys regarding quality of life that I could find.
This was a big question for me and a lot of others contemplating transplants.
I think its a somewhat subjective question as some might consider some ailments as acceptable and others not.
I get the impression that gvhd is a big concern of yours and rightfully so but 50% of those undergoing transplant get some form of it but that doesn't mean it wont go away. Your son is in an age group much different than what we are used to seeing on here so it might help to find support from those with a similar scenario as yours. Younger patients seem to do much better. There's a BMT group on facebook that might be of help. The conflicting info you receive from different doctors is a challenge. I wish it was easier for you.
All the Best

[Relentless Against SAA]

Originally Posted by sbk007

I get the impression that gvhd is a big concern of yours and rightfully so but 50% of those undergoing transplant get some form of it but that doesn't mean it wont go away. Your son is in an age group much different than what we are used to seeing on here so it might help to find support from those with a similar scenario as yours. Younger patients seem to do much better.

sbk007,
Thank you for your response.
Yes, I am very concerned. Terrified about so many things. My son is a young adult, very very healthy except for the SAA. A wonderful person. I guess I know enough about gvhd to be scared but not really enough to be well informed. We get different statistics from every doc we see. When we were in the hospital for ATG, 2 patients on our hall that had 10/10 MUD transplants died of gvhd. Both were older, both had Leukemia.

Can you tell me more about gvhd: I know what side effects can happen but not how severe, not what it is really like to live with it, does it typically go away after 3 years or does the gvhd that develops during the first 3 years post transplant go away??

Second question:
Friday night I talked with a doctor from John Hopkins. Wow, she is a kind, understanding, and very concerned doc. I was impressed. I called them because of info I've read on this forum. They are using Cytoxan day 3 and 4 post transplant to decrease gvhd and having great results. She said they also place a priority on haplo matches from family over MUD transplants. Does anyone have experience with this?

[sbk007]

I can understand the angst. Its hard to make a decision because we don't get any solidified answers, one doc hears of good results of one study another doc is watching a different one. Then they don't know if preventing the gvhd comes at the risk of overall outcomes or long term outcomes. It doesn't help knowing that 10/10 matches be it sibling or unrelated as you've seen first hand isn't a guarantee. On the other hand 9/10 matches work in many cases, and many 10/10 matches are successful. I read about Cytoxan but not enough were I found anything conclusive about it. Sorry to say these procedures come with risks so the game becomes can I get my odds better. The transplant docs know that a 21 year old has better odds than a 50 year old and so they may be inclined to encourage going ahead with it.

This link describes the 2 types of gvhd (acute & chronic) the grades, what its like, most of the questions you were asking.
http://en.wikipedia.org/wiki/Graft-versus-host_disease

Take Care and hang tough, Steve

[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

[creehill]

Originally Posted by sbk007

I don't think you can test for the protein before transplant. I think after transplantation they can test for it as an early indicator. That's the way I read it.
Not only is there t-cell depletion controversy(because although you might avoid gvhd, it might increase the risk of other things) but also the method used to deplete the t-cells is controversial. There's one drug called Prochymal that's approved in CD but I cant find much info on the clinical trials here.

This is exactly what happened to my husband The protocol that took place after transplant was to decrease his risks of GVHD. It is what I would deem over the top and caused his organ failures and damage to the donated cells causing the clotting disorder. I do not feel they know enough to protect our loved ones from the critical complications that arise after HAPLO the immune system is compromised for such a long period of time that it becomes a race to have the patient graft and begin to grow a immune system before complications become life threatening.

Seek as many opinions as you can in making the decision to move forward with the HAPLO.

[Tii]

I received a bone marrow transplant last year, my sister was my donor, and I have a mild GVHD in my liver. I have medicines to take for that. My friend who had unrelated donor got the skin rash but no other symptoms from GVHD, and my other friend is on the list to receive new lungs as the GVHD hit hard in her lungs. Everyone is different. There is no way to predict if and when and how it will appear, it can be acute or chronic. But do not fear something that you cannot control, and do not research wikipedia or other non major hospital sites, they don't do research they just write topics and sometimes it is not even accurate. Write down questions to take in with you to the doctor visits, write down the answers for later review. Also look up support group communities in your area, they will have a ton of real life experiences to share.

I wish all the best to you and your family.

[Mondreamr1]

Originally Posted by Relentless Against SAA

sbk007,
Thank you for your response.
Yes, I am very concerned. Terrified about so many things. My son is a young adult, very very healthy except for the SAA. A wonderful person. I guess I know enough about gvhd to be scared but not really enough to be well informed. We get different statistics from every doc we see. When we were in the hospital for ATG, 2 patients on our hall that had 10/10 MUD transplants died of gvhd. Both were older, both had Leukemia.

Can you tell me more about gvhd: I know what side effects can happen but not how severe, not what it is really like to live with it, does it typically go away after 3 years or does the gvhd that develops during the first 3 years post transplant go away??

Second question:
Friday night I talked with a doctor from John Hopkins. Wow, she is a kind, understanding, and very concerned doc. I was impressed. I called them because of info I've read on this forum. They are using Cytoxan day 3 and 4 post transplant to decrease gvhd and having great results. She said they also place a priority on haplo matches from family over MUD transplants. Does anyone have experience with this?

I had a mini Haplo at Hopkins in April, my sister as donor (I'm 31, she was 26). I did not have a very good registry match. I was a relapsed leukemia recommended for transplant. (Found the forum looking for iron overload issues). I had two days of cytoxan on days +4and+5. I've had some mild skin issues. I have topical steroids to deal with it. It flares a bit if I'm not as careful as I usually am with sun exposure. Other than being slightly itchy at times I don't really notice it. My doc is happy with it. He likes some mild gvh as it should lead to GvLeu if there is any residual leu.


You do have the regular transplant risks from infection. I did deal with a round of that, before engraphtment. With no counts it is a luck game. I managed to go through all of my prior chemo without any major issues.

I do have some ITP issues after a viral infection that started about 5 months out. That just happens in some cases, doesn't seem to matter the type of transplant. A lady I know who had a full sibling transplant a year before I had my Haplo (also leukemia ) is dealing with something similar. My doc said it happens, but isn't too common.


Eta hopkins does quite a few haplos. Most of the people I was in clinic with we're haplos or full siblings. There were a fair number of YA and the older pop included.

[Cheryl C]

My good friend's brother who had MDS suffered from GVHD of the gastro intestinal system after his transplant for 12 years, but finally came through.

[mausmish]

Johns Hopkins is very focused on GvHD prevention. They do high doses of Cytoxan post transplant to avoid the use of immunosuppressants or steroids. I chose this route for my 10/10 MUD transplant and have experienced some skin and eye GvHD but nothing too bad. I'm happy to have avoided the immunosuppressants and steroids altogether thus far (3 years). Memorial Sloan-Kettering in NYC does t-cell depletion. I know at least one person who has fared extremely well from there, also 3 years post transplant for MDS. I also know Hopkins does many Haplos but have no personal experience.

[Whizbang]

I met a volunteer at Memorial Sloan Kettering who had a T-cell depleted transplant 15 years ago (he had Leukemia that was in remission before transplant), he had a relapse of Leukemia, and over the first two years, they fed him back 1/3 of his donors' T-cells (that they had frozen), they did this three times, and he was finally cured... He has been Leukemia free for 13 years, and never had any GVHD at all...

[Relentless Against SAA]

Thank you everyone for your answers. I have a feeling we will end up in transplant eventually. As of right now, best match is a 9/10. Not sure where the mismatch is but we see the transplant doc soon to find out. Praying that a 10/10 match is found.

[dfantle]

Originally Posted by Relentless Against SAA

Thank you everyone for your answers. I have a feeling we will end up in transplant eventually. As of right now, best match is a 9/10. Not sure where the mismatch is but we see the transplant doc soon to find out. Praying that a 10/10 match is found.

Wishing you all the best with your decision. Choosing the treatment protocol and transplant center can be such a difficult choice.

If you decide to move forward with a transplant, & are able, I encourage you to choose a center where they have significant transplant experience. These centers know how to manage most any issues which may arise & this knowledge & experience can make all the difference.

Unfortunately there are no guarantees with GVHD & although research is underway to try and better understand how to minimize GVHD, answers & protocols may still be several years out. Though as others have mentioned, the younger the patient, the lower the potential incidence.

[Rea]

I sympathize with your decision struggles and send my best wishes to you and your family. My starting point was quite similar so I thought I would share some details. Please know though I'm not trying to sway you one way or another, every person and transplant is different.

I received a Reduced Intensity Bone Marrow Transplant Jan. 31, 2013, from a 9/10 matched unrelated donor. I was 30 (now 31). I was diagnosed with PNH and Moderate to Severe AA in Nov. 2011. I had an ATG in Feb. 2012 that was unsuccessful. My PNH was rather pronounced with 89 percent of my cells presenting as PNH cells.

The US standard for matching uses 10 HLA markers, of which a subcategory 8 are the most important. A study was published (I can't find it right now) in Europe, within the last few years, that only used those 8 markers. I believe 8 is the standard in Europe? My donor and I had those dominant 8 matched.

My doctor requested Bone Marrow over Stem Cells, as those patients tend to have less GVHD (as mentioned by someone else, AA/PNH patients do NOT benefit from GVHD). Statistically, cells from young adult, male donors have better success rates (mine happened to be).

It's easy to get lost in the statistics and the stories. I went through the same as everyone else, and read everything I could before deciding if I should proceed with a transplant. Patient blogs, medical journals, articles, etc... What I learned though was that it truly is different for each person. I read descriptions about many successful at-risk patients, and tragedies about "ideal" patients with donors that were from twins.

My doctor and I discussed the haplotransplant at Johns Hopkins as an option, but felt my donor was a strong enough match (in-part, because of that study). And since it is good practice and those around me felt it was important, I had a second opinion from a different facility and they agreed.

I've heard great things about the haplos and it has opened many doors not only for people, but new technology. One day they no doubt will be doing half-matched unrelated donors. Currently it's new and could be considered more of a risk.

I've been supremely lucky and have experienced zero GVHD so far (let's hope that continues!). And few other complications. Before a transplant they do a lot of testing to determine if one is medically able to have the transplant and how to gage one's viability. I had a low pulmonary function test (due to my PNH) and very high liver enzymes (due to medications, the night before my scheduled transplant, I spiked a fever and it was pushed back a month). I had some complications along the way, nothing compared to what I've read on here though.

I had an unnamed virus attack in June, it caused some temporary chaos, a stint back in my old transplant room, but I slowly recovered from that.

My numbers are currently stable, my pulmonary function is slowly recovering (it's checked every three months), and I'm about to start phlebotomy to remove excess Iron due to the multitude of RBC transfusions (a common problem and treatment for people with these diseases). I'm back to work and while it's a struggle at times, I continue to improve.

I'm still on my immunosuppressants and will begin to taper at my one year mark. My doctor said that will be a test, sometimes GVHD does not appear until the medication is tapered.

For your question about GVHD timing. Technically it can show up at any time, but the further from transplant the least likely it is to occur and tends to be less severe. If it does happen, it can go away in months to years, or last forever. It really is that variable.

I agree with the others, it's important to really trust your medical team and feel you have a good connection with them. The hematologist should be a PNH and Aplastic Anemia specialist. Aplastic Anemia and PNH is different from cancer and the treatment details are different.

While considering where to have the transplant (if not having the haplo) it may be helpful to keep in mind that after the in-patient time, facilitates typically require patients to stay within a certain mile range for an extended period of time post-transplant. Each facility has different standards and it depends on the health of the patient.

Variable answers and data: Yea, different doctors and facilities follow different practices. Some doctors are more conservative than others. Studies are different depending on when they were done, what treatment was used, etc… It's a lot to sift through.

Below is a study published in Blood Journal about Long-term outcomes for AA patients. Once again though, the statistics really do not capture the details of individuals and the many success stories there really are.

http://bloodjournal.hematologylibrar...03/7/2490.long

I hope the best for your son. Please feel free to send me a message if you have any questions.

[Relentless Against SAA]

Rea,
Thank you for your response. I am glad to hear that things are going so well for you. If I may ask, where did you have your BMT?

[Rea]

Sure of course. I had my transplant (and all of my care) at The Ohio State University Wexner Medical Center, James Cancer Hospital in Columbus, Ohio. My luck started early in that I live in town.

http://cancer.osu.edu/Pages/index.aspx

The specialized BMT Unit (both out-patient and in-patient) are amazing. The entire staff is well experienced, compassionate and dedicated.

I've heard from various people they have good overall success rates and lower instances of GVHD. Not sure what their actual statistics are though.

I had my second opinion at the Cleveland Clinic, also a great facility.

My best to your family and happy holidays!

[marmab]

Rea, If you don't mind me asking, what was the preparative (conditioning) regimen for your transplant?

[dfantle]

Rea, our one year dates are really close as mine is January 29. It's amazing that its been almost one year already!

I'm looking forward to celebrating this milestone & hopefully finding out a bit more about my donor.


Happy Holidays.

[Rea]

@marmab my regime:
Day -5: Fludarabine (1/2 hr)
Day -4: Fludarabine (1/2 hr), Rabbit ATG (6hrs - for the first day, if a patient handled it well they can do it in 4. I wanted to be cautious so I requested all of my ATG infusions to be done over 6 hours).
Day -3: Rabbit ATG (6hrs), Cytoxan (2hrs)
Day -2: Fludarabine (1/2 hr), Rabbit ATG (6hrs), Cytoxan (2hrs), start 24 IV of Tacrolimus*
Day -1: Total Body Radiation (I think it was like 20 min on each side? For all my detailed notes, I can't seem to find this information.)
Day 0: Marrow Infusion (donor cells were frozen)
Day +1, +3, +6, +11 (4 doses/days): Methotrexate IV (ab 1hr). This can cause bad mouth sores, and if a patient does not handle it well not all four doses are given. I had no mouth sores and was able to receive all four doses. I kept to the dental routine prescribed (a solution, biotene mouthwash & brushing 4x/day), which supposedly helps.

Note: there were other medications along with the chemos for various reasons: Mesna IV (24hrs) to help flush kidneys. Steroid IV, anti-nausea meds, allergy (had a mucous mouth/congestion, once I was given zyrtec it was much better), etc…

*Tacrolimus:
I hated being tethered to the IV pole 24/7, so they switched me (day +8) to the Tacro pills earlier than usual. They thought it would only be a short reprieve, expecting a fever, in which I would have to return to the IV 24/7. I didn't end up with one though and I was so happy! (I had one fever on a chemo day, but not after I got the marrow).

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.

They told me people do better if they get up and walk. This was really difficult for me, but I did it, mostly because they said it helped keep fevers away…I walked 3-5 laps around the nurses station, at least 3x/day. I also owe my family for that. My mom, dad and sister came in turns and I walked with each of them. The rotation and routine really helped.

I'm sorry, I'm the least concise person ever.

My numbers were slow to come up, about day +16 to +20, was released from hospital day +22 (they said AA patients take longer than cancer patients in addition to receiving bone marrow over stem cells). Though once they did my engraftment happened quickly. I was 100% donor at +29 and have remained since.

I went in with an elevated liver, and it increased even more (ALT up to 400, AST 200) but eventually came down. They are mostly normal now unless I take anything with Acetaminophen (Tylenol) they elevate just above normal.

I think following all the extra stuff made a difference: walking, anti-bacterial wipes after shower, using the breathing device, eating, etc….at first sometimes I could only eat a cracker with peanut butter, but it was something. None of these are guarantees, but they seemed to help me.

It was very taxing on me mentally and still is sometimes. I brought books, movies, an iPad, Macbook, iPhone, cards, puzzles, podcasts, music, etc…personally none of those appealed to me. I actually disliked looking at screens and reading for a long time. Some friends gave me two coloring books and crayons and it was the best present ever. They were the easy kind with little detail. I had brought stationary with me too. So coloring, sending the pictures and hand written cards to loved ones was the only thing I enjoyed, and it kept me busy. Everyone is different, but finding something to keep the mind stimulated/occupied I think would help anyone.

@dfantle
Congrats!!! I'm so happy to hear that. I can't believe it's going to be a year either. Especially going back and looking through my notes. I also am looking forward to knowing more about my donor. I sometimes have a difficult time really absorbing that all this happened.