AA 7 months post ATG - wait or BMT?

[MickeyandGail]

I have just been using this forum for information and this is my first post. My wife 62 had a large thymoma removed at MD Anderson in Houston last December with no problems. In Feb of 2015 I took her to the ER and she had very low blood counts. In March she did ATG and has been on cyclosporine, Promacta, all the anti medications and has been transfusion dependent. Her neutrophils started staying between .65 and .95 in July. Her platelets started holding between 13 and 19 since August. She is now going 20 days or so between RBC transfusions (2 units at a time). She has had 38 units of RBC and her serum ferritin is 3300. They have been doing BMBs all along and even though her cellularity is now 0-40% they are recommending going with a BMT. She has no related donor but has 3 unrelated donors at 10/10. We are trying to make a decision to either go with it, watch and wait some more or get another ATG with rabbit this time. Anybody have any advice? Anyone with AA had a BMT at MD Anderson over 60 yrs old and did ok? Thanks so much for all of you willing to contribute. I will also start if I can help in any way.

[bailie]

I am sorry for the diagnosis. The doctors don't make the suggestion to go to transplant lightly. It is very important to go to transplant while in the best health possible. It appears that she has very good matches available. Her age is not a problem if she is otherwise healthy.

I wish both of you the best of outcomes.

[vickij]

I had AA in 2012 and had ATG in April 2012. I did OK for a year then my blood counts started dropping. I had to have transfusion about every 2 weeks. I had another BMB in March 2013 and that's when they found I had MDS. I took Revlimid for 2 months and my blood counts went up. I felt good and was in good health so Dr said we should look into BMT. I went to IU Health in Indianapolis ,In. They found a 10/10 unrelated match and I went into hospital the day before my 60th birthday. I had SCT 1 week later and today I feel almost back to normal. As Bailie said, it is best to have transplant when she is healthy. Best of luck with your decision.

[MickeyandGail]

Thank you for your input!

[DonnaM]

I am similar in age to you but haven't had any other health problems like your thymoma. Dr. Lawrence Rice at Methodist Hospital was the hematologist who diagnosed and treated me. I had ATG and cyclosporine, and also had Promacta when I relapsed, but Promacta didn't work for me. Dr. Rice referred me to Baylor College of Medicine Cell and Gene Therapy at Methodist where I had a 5/6 MUD BMT on 11/13/13. I have had only 2 BMBs, one when I was diagnosed and another one during the workup for the transplant. A BMB wasn't done after the transplant because my doctor said that he could tell by my blood counts that my marrow was healthy. I take Prograf and prednisone for some GVHD, along with various other meds to prevent infection. As I tell people, I feel better than I look. I'm coming up on my 2nd birthday, and I thank God that I am doing so well.

[marmab]

I don't know if my story will help at all in your decision-making, but the similarities of your wife's case and mine struck me. I had my transplant at Beth Israel Deaconess Medical Center in Boston, not at Anderson, but I'm not sure that outcomes are likely to be significantly different at major transplant medical centers. My case was very much like your wife's. No treatments worked for me (see my signature). My marrow celluarity, measured in many BMBs, was never over 10% and basically the only platelets I had were the ones I was getting via transfusion twice a week.

Because I was very healthy and active, I was EXTREMELY reluctant to go to transplant. It's hard for me to convey how hesitant I was. The survival statistics (for MUD transplants for AA, 60+ years-old) worried me, but the problem is that the statistics ultimately may not be that helpful in decision making. There aren't that many folks out there getting transplants who fall into this particular category. So how informative are the statistics, given the small numbers in this age group? Probably not very. Each case -- and there really aren't that many of them -- is unique. And so I made myself crazy doing thousands of hours of research that, in the end, didn't help me make the decision. I'm a bit embarrassed and chagrinned to say that, instead of making a conscious decision to go to transplant, I finally simply gave up, and gave in to the pleas of my medical team to go for transplant after two years of being transfusion dependent. It was a torturous decision for me, full of unknowns, but in hindsight it was clearly what was needed and I should have done it sooner. I am doing very well, back to normal in fact, with no GVHD! The regimen I had (Campath, fludarabine, cytoxan prep, followed by marrow transplant, not stem cells) is thought to be effective in reducing the incidence of GVHD. And I was fortunate to have a better than 10/10 match. I am happy -- and thankful -- to say that mine has been a success story. Even though none of the several treatments I had before transplant helped, and despite the fact that my medical team (and second opinion team) highly recommended it, I resisted transplant for too long. I don't want to give the impression that there weren't bumps in the road -- there were many: Several readmissions to the hospital, often for weeks (including an ICU admission for a crisis) for infections and complications, a destroyed thyroid gland, etc.. BUT, I am feeling fine now. I got through every problem with the help of my excellent medical team, and I now feel completely back to normal. Hope this helps in some way with your decision making.

[MickeyandGail]

Thanks again. We have decided to go ahead with the transplant. Marmab, we have been through the same research and also come to the same conclusions. They are planning on using the same conditioning that you got.

They are moving ahead on donor contact and have set a tentative date to start conditioning on Nov 30 with transplant on Dec 9th. We are resolved and ready and praying all goes well.

[marmab]

I will be rooting for you! My very best wishes and hopes for a speedy and uncomplicated recovery! Oh, one tip that I'm sure others have mentioned -- setting up and using a Caring Bridge page was a great way to send out news to everyone. There are similar sites out there as well; some medical centers have their own.

[bailie]

We wish Gail the best. Keep us posted so we can help with any questions. The caregiver is very important for success.

[MickeyandGail]

We have a verified, agreeable donor! Our angel is a 25 yr old female with the same blood type. We are praying she will be blessed beyond measure! Gail starts all the pre-admission testing (ECG, Pulmary, Dental, CT and remove PICC and put in CVC line) beginning November 30. Admission to hospital on the 8th.

[Neil Cuadra]

Mickey and Gail,

Thank goodness for the generosity of Gail's donor. There's nothing more valuable that someone can give another person than life itself.

Good luck with testing and preparations. Please keep us posted.

[Cheryl C]

Wonderful news Mickey and Gail. Hope you come through the pre-tests with flying colours.

[MickeyandGail]

Praise God, Gail passed all her pretests and is ready to go with the transplant. She has to get her PIC line removed from her arm and a CV line put in her chest tomorrow. Then next tuesday day -8 she will be admitted and start on day -7. If anyone is interested in following her progress, she is doing a personal blog at https://gailpatrick.wordpress.com

[bailie]

Gail, what is interesting, I thought, was that before the transplant my blood type was A+ and after the transplant I was O+.

Wishing you the best. Feel free to ask questions.

[MickeyandGail]

So far so good. She had one day of fever and feeling bad the day she got the transplant, but since then she has been doing really well. We walk over a mile every day. They had a special dinner on Christmas and she participated in the annual Christmas "pole" parade. This is where all the transplant patients decorate their IV poles and walk through a couple of pods and let the nurses judge. Her white count was .1 then .2 yesterday and .4 today! Long way to go but they say any day now they will jump.

[bailie]

Gail that is great that you are walking so far! I didn't walk a mile until about Day +50. Keep up the good work. It was Day +12 when my numbers jumped up tremendously in one day. Yours probably will also.

[Cheryl C]

Wonderful that you are doing so well, Gail. Will be watching for news from you guys!