5 Years After Transplant

[sga1989]

Hi everyone,

When I was sick with the rare disease of Severe Aplastic Anemia, I searched for hours for blogs and forums and information, for someone to reflect back to me what I was going through with a happy ending. Now that I am 5 1/2 years out from transplant, I decided to create a blog to share some of my experiences, reflections & (thoroughly non-medical) advice. I hope you will give it a read:

https://5-years-later.com/

I plan to update regularly. I'd also love to connect with others who lived through or are currently dealing with Aplastic Anemia--you can reach me at sarah.anders@5-years-later.com

I know firsthand how incredibly challenging this diagnosis can be, and I am sending everyone reading this love, strength & all my support <3

[Neil Cuadra]

Sarah,

Congratulations on your five-year milestone!

Thanks for sharing your story in this way. It offers encouragement to people who are just starting a journey like the one you've had.

Your hematologist's comment that "You're alive, but you're not really living" struck me because it applies to so many who are facing treatment decisions that seem like "no win" choices. Whether or not to take a chance on a riskier treatment that could lead to a cure sometimes comes down to quality of life questions.

Dr. Young at the National Institutes of Health is one of the foremost authorities, if not THE foremost authority, on aplastic anemia in the U.S. You were definitely fortunate to receive care there.

You mentioned that they found a mutation in your cells after your ATG treatment. That's also what happened to my wife. At the time, we thought that meant that her AA was transitioning to a different bone marrow failure disease (MDS), explaining why ATG wasn't fully effective. In hindsight, we think she had MDS all along, and that it just hadn't manifested in her tests. But once you choose to go to transplant, as we did, it hardly matters which disease it is, because your bone marrow will be replaced.

It was wonderful of your parents to stay so close and supportive, and your donor sounds especially wonderful. You had a great team!

I hope people heed your message about joining the bone marrow registry. That simple gesture could save someone's life.

[Matthew42]

Originally Posted by Neil Cuadra

Sarah, Dr. Young at the National Institutes of Health is one of the foremost authorities, if not THE foremost authority, on aplastic anemia in the U.S. You were definitely fortunate to receive care there.

Hi there! I hope you and your wife are super well.

You are exactly right about Dr. Young. My mother's hematologist recently consulted him on my mother's case (she has severe aplastic anemia). And, boy, did we learn a lot more about my mother's condition just from his analysis. The hematologist read what Dr. Young had so say (it wasn't long, but it was full of vital information). My mother's hematologist would often refrain from saying things with certainty, but now that Dr. Young has chimed in, things are different.

Here's what we learned from Dr. Young:

1). My mother's aplastic anemia is highly immune-mediated with the PNH clone, and the fact that there were no mutations or gross cellular changes in bone marrow 6-7 months post ATG, either . There is no doubt as to what she has. You really have to make sure the person doesn't have some set of hypocellular MDS, particularly in people over 60. According to Dr. Young, it is classic SAA.

2). She has had success with the neutrophil line from ATG + cyclosporine, but the other two lines have yet to show real improvement. She now has 2-lineage SAA, instead of 3.

3). Even after 10 months ATG, there is a still a chance my mother could have a full response because of marked improvement in the neutrophil line. Her age could be the reason for being such a slow responder. It is possible it can take close to 2 years in older people to show a full response to ATG (not younger people, though). Statistics are not that good/reliable with older people with aplastic anemia, because it is very much a disease of young people. So, essentially, the 6-9 months timeframe to show recovery after ATG + Cyclosporine is not that valid with people over 60. A slow response, though, does have its advantages.

4) If things don't improve in the next 4-5 months, Dr. Young wants my mother to do a Campath infusion. He believes that there is a decent chance it could get her off transfusions for good. She doesn't need it for the neutrophil line, though. For 3 lines, there is about 40% chance for a full response. And those with 2-lineage SAA (my mother), the chances are about 60% for a full response. I think there is an ever higher chance for a partial response, but I am not sure. I don't remember.

5). Promacta is not helping my mother at all. It's been 10 months since ATG, and no response in the platelet line. We can discontinue taking the drug.

6). He said "no" to rabbit-atg, as it could bring about unwanted changes to her bone marrow. And, furthermore, it is not likely to be as successful as Campath.

Also, one more thing to say to you, Neil: That is why it is very important to do a bone marrow biopsy several months after ATG: does it show "mutations"? If it does, it might be less likely the person really had classic SAA at time of diagnosis (more likely hypocellular MDS???). That seems to be true; in fact, my mother's hematologist hinted to that. My mother, however, has shown no cytogenetic changes in her bone marrow 6-7 months after ATG, other than slightly higher cellularity and a few dysplastic red blood cells (polychromasia).

It's hard to stay hopeful with the waiting game. It's driving me nuts. LOL. She will probably need Campath.


@OP: I am so happy for your success. Amazing! I wish you the very best in your health. I give you all my love and wish you much peace.

[sga1989]

Neil: Thank you so much for reading & sharing your thoughtful, kind words. And, thank you for creating & curating this space for people with rare blood diseases to come together.

Matthew: I completely understand the frustration with the roller coaster. There are so many numbers and so much information to parse that it can be confusing and anxiety-provoking. I?m wishing you and your mom all the best in this difficult moment and sending love back your way. Being a caregiver can be extremely tough and I hope you are also receiving emotional and mental health supports as you navigate this illness.