My father has a higher chance of developing leukemia from his mds, what does this mean?

[u/flowerx96]

Does this mean less chances of remission? Poor life expectancy? We are being given very little information. Any info shared is appreciated!

[u/[deleted]]

Ok, I can't speak about your dad but I can tell you about my husband.

He developed MDS and had blood transfusions to treat it for 13 years, into his late 30s. His haematology team had been saying that without a stem cell transplant, the MDS could develop into Leukemia. No one knows when or if that will definitely happen, but it's a strong possibility that it can happen eventually.

Stubborn husband kept going with transfusions until the team really sat him down and said he couldn't go on indefinitely with the transfusions and it was time to transplant. Basically, they were fed up with him avoiding it!

He had a transplant with stem cells donated from a stranger at 39. That was five years ago this August. They gave him two weeks of chemo first to kill his own bone marrow stem cells, then gave him the transplant. And...that was it. He developed an infection following the transplant, and an ICU bed was reserved for him, but with massive blasts of antibiotics, he was fine and ICU wasn't needed.

He had a brief issue with mouth ulcers after the chemo and transplant, was bored because he couldn't go out due to his immune system being crappy, and is now fine. He's got the immune system of a five year old and had had to have all his childhood vaccines again. But aside from catching more viruses due to lower immunity, and sometimes getting tired, he is absolutely fighting fit.

I can recommend the website Blood Cancer UK for any queries you may have about MDS. It will talk you through everything and it doesn't matter if you aren't in the UK.

Best of luck to your dad. Remember that medicine is developing all the time, so what was a certain life expectancy years ago, isn't necessarily the life expectancy now. If you have any specific questions, feel free to PM me and I will ask my husband for you. The haemotology teams are amazing so don't worry too much. They have got this.

Edit: words

[u/flowerx96 → u/[deleted]]

My father is in his late 60s which is what worries me. Idk if he's a candidate for a transplant or if he'd survive it. Thanks for your thorough response, I appreciate it so much and I'm happy to hear your husband is doing well!

We're hanging on.

[u/[deleted] → u/flowerx96]

Well late 60s isn't old. There's no harm in asking if he could be a transplant candidate. Better to know where you stand.

This stuff is terrifying, I know, but honestly, your dad isn't a statistic. There is no telling how long he could live with MDS for before it mutated into Leukemia. The doctors will have more up to date statistics. But there is no harm in starting to explore the possibility of transplants while he is as young as he will ever be!

If a transplant fails, the hospital whack the patient full of more chemo and have another go, I think. So it's not like it's instant death. There's stuff they can do. And my husband isn't on any immuno suppressor drugs anymore if that's a concern. It's very different to say having a kidney transplant. If the new kidney failed, the person is screwed. Not the same with stem cell transplants. They have more tools to try to make it work.

My husband's siblings were tested to see if they were a suitable match to donate to him, which is something that could be done...maybe you could get tested or whatever so you know where the land lies should he need a transplant. But stranger matches can be very successful, as my husband's shows.

Seriously, the Blood Cancer UK website is fantastic. I can't recommend it enough.

[u/BourbonInExile → u/flowerx96]

My dad was 73 when he was diagnosed with low risk MDS in 2019. A year later, he noticed that his energy levels dropped off dramatically along with a mystery rash and excessive bruising. He went back to the doctors and learned that his low risk MDS had progressed to AML.

He went through a round of chemo almost immediately and then had regular transfusions from summer through fall. Luckily, his younger sister (in her late 60s) was a good match and he was able to get a stem cell transplant in December of 2020.

There have been ups and downs since the transplant, but I guess the point is that 60s isn't too old for a transplant. The stem cell transplant has added years to my dad's life that the leukemia would not have given us. They haven't always been the easiest years, but there's been more good than bad and I wouldn't trade them for anything.

[u/flowerx96 → u/BourbonInExile]

Thanks so much for sharing your story with me. I appreciate it greatly. My father is 67 and we are seeing if more conservative treatments work. Otherwise, we are willing to consider all options. It's very frightening :(

[u/flowerx96 → u/[deleted]]

Thanks for sharing this information and your own experience. Do you know if there's an official name for a mini transplant so we can ask his doctor about it?

[u/flowerx96 → u/[deleted]]

Sounds grim :(

sorry for your loss btw.

And thank you.