2nd Transplant

[Rarity]

Hello everyone,

Hope everyone is doing well.
It?s been a while and a roller coaster these last 2 years. Still fighting the fight 5 years later. My husband has been faced with a few relapses 2 years after transplant. We are grateful for the successful uneventful 2 years after the first transplant.
To recap my husband was diagnosed with MDS in 2017. On watch and wait / transfusion dependent until 2018 at which time he was transplanted MUD. He did excellent after transplant. About 2 years later, in 2020 during a routine biopsy it was determined he had relapsed and progressed to secondary AML.
He went the Veneticlax/decitabine route. Unfortunately, did not put him in remission. Admitted for a more aggressive chemo with Vexyos. Some health side effects. It was especially difficult during the pandemic. Six weeks with no visitors but very understandable. Thankfully it got him in remission and was fine once again.
About 5 months later during routine labs his platelets were low and continued to drop very fast. Relapsed again and admitted for more treatment. This was the hardest on his body with several complications. He persevered and in remission once again. He doesn?t stay in remission for very long. A DLI was next.
He had 2 failed DLI's 5 months later with the same donor but couldn?t proceed to the 3rd as it was determined he was in relapse again when we were about to do the last DLI and was sent home. We were not expecting that news and we were shocked. About a month ago he received treatment once again with the hopes of another remission and do a 2nd transplant before another relapse.
A true fighter he did get in remission again. Now in hospital for a 2nd transplant (Haplo this time) and doing well. Hopefully this will either cure it or a more durable remission.

All the best,
Rarity

[Marlene]

Wow, that's a lot to go through and stay positive all the while. He's real fighter and so are you. Wishing you both the best outcome and lasting remission.

[Meri T.]

Hello Rarity,
Thank you for letting us know of your husband's 2 year roller coaster with this disease. And yours too, as his caretaker. You both are fighters!
I do hope this second transplant will give him the cure we all want for him. He deserves it.
Please take care.
My prayers for both of you.
Meri

[Rarity]

Hello everyone,

It?s been a while since I posted updating the 2nd transplant. (just about 2 years 2nd transplant transformed to AML) 7 years after the first MDS. He had a haplo transplant with our daughter as his donor. She is awesome! The first was a MUD. Very grateful for his selflessness from a stranger donor.

This one has been a much longer recovery than the first transplant due to some complications. With the first transplant recovery went well with no issues. We are very grateful for the transplant team in getting him through this transplant and has been in remission since.

Over the past several months he is now doing wonderful! His last issue is iron overload and is having phlebotomies to knock the ferritin levels down. It is a long process but it?s working.

For all those patients and their caregivers who have to endure these horrible blood diseases, please have hope! Wishing everyone all the best! This forum is very helpful and will give an understanding but also know that everyone?s case is different. Meri? Thank you for always checking in on us when you post! So happy to hear you are doing well! Hope everyone else is doing well too!

Rarity

[Marlene]

Happy to hear the second transplant is holding. Getting that iron off takes a lot longer than you would imagine. Glad his bone marrow is up to the challenge though.

Withing you both good health and happiness ahead.

[Hopeful]

Thanks for sharing the news, Rarity. Haplos have come a long way! I hope the worst is over and you all enjoy a long and healthy remission!

[Rarity]

After a couple of weeks since my last posting my husband had his routine labs done before phlebotomy showing his counts were dropping. He had a biopsy showing he relapsed. He can?t just seem to catch a break. We are devastated to say the least. He is now on palliative care and eventually hospice.

Again, thankful for this forum from the beginning of this horrible disease for helping me to understand the diagnosis. For members answering my questions when I knew nothing, offering encouraging words or just referring myself to look up something to find an answer.

My hope now is for research to truly find a cure for all and not a band-aid for some. The two transplants did give him 7 more years and we are very grateful when that could have turned out differently from the start.

Rarity

[Marlene]

I am so sorry to hear this. He was doing so well. I can only imagine how devastating this was for the both of you. You faced this disease with courage and determination, encouraging others that it's worth the fight.

We wish you peace and comfort in this journey.

Marlene and John

[Rarity]

I am saddened to say that my husband passed away Saturday August 31, 2024 after a very long journey with MDS and then secondary AML. He's the strongest and bravest person I know to endure all that he went through.

Although no one wants to leave this life, he has been at peace with knowing this because of his strong faith. In turn, helped to care for him in his final days.

My hope now is for anyone with this and caregivers to have that cure.

Rarity

[David M]

I am so sorry to hear this. Prayers for you and your family!

[Sally C]

My deepest condolences to you and your family. So thankful that his Faith gave you all strength in this long, difficult journey. I pray that God will comfort you in the coming days, weeks and months. May he rest in peace.
Sally

[Marlene]

I am so sorry to hear of his passing. My heart goes out to you and your family.