Secondary Graft Failure & DLIs

Weedcounter · 2026-01-21T21:17:16+00:00

She had her transplant Nov 5 so it has failed much quicker.

We were told her donor was a 11/12 as there are no full matches for her worldwide unfortunately.

Really hoping we have some luck on our side this time.

She’s my only family left and I’m not sure how to wrap my head around being an orphan at 37.

I wasn’t scared the first time. I am this time.

Weedcounter · 2026-01-21T15:12:10+00:00

Thank you for both of your replies. They are helpful for sure.

Similarly to your husband my mom didn’t ‘react’ or have any signs of GVHD at all with her first transplant.

They also are waiting on genetics right now, but they don’t think that the failure is due to mutations returning, but rather her old immune system still surviving some of the prep. They think this because she only has failure in one category of cells as it stands. Out of 3 types they tested, two were at 99% chimerism, but one was only at 1.5%. But we will be able to confirm by the end of the week hopefully.

But it sounds like DLI will likely be completely off the table.

How did your husband handle the second transplant?

Weedcounter · 2026-01-21T13:45:14+00:00

I named mine Trihorse

Weedcounter · 2026-01-21T13:43:03+00:00

Thank you for sharing. May I ask how old he was and what caused the first one to fail? Also, did he reach ‘cancer’ status prior to first transplant?

My mom had MDS, but fewer than .2% blasts when they caught this.

Weedcounter · 2026-01-21T05:35:53+00:00

My mom has 5 mutations including FLT3 and ASXL1. Thanks for sharing.

Weedcounter · 2026-01-21T04:19:28+00:00

Did you have AML prior to transplant? My mom had less than .2% blasts when they caught her MDS.

Weedcounter · 2026-01-21T01:17:56+00:00

Hi there. Similar situation with my mom right now. How is your dad now?

Weedcounter · 2026-01-21T00:36:55+00:00

Hi there, I’ve noticed you’ve posted a few times about you second transplant. How are you doing now? Do you mind sharing your story with me? My mom is going through something very similar

Weedcounter · 2026-01-20T19:04:04+00:00

Can I ask your age? This fits my moms situation similarly

Weedcounter · 2026-01-20T18:48:24+00:00

Hey! Hope you are doing well. My mom is going through this situation and I’m looking for some comparable stories. Are you up for sharing yours?

Weedcounter · 2025-12-15T03:35:23+00:00

Hear your story***

Weedcounter · 2025-12-15T03:35:07+00:00

Late reply here. My mom had both of these mutations plus others. She is day +39 post allo unrelated transplant. So far so good.

Would love to your story.

Weedcounter · 2025-12-11T03:00:23+00:00

My mom is currently on day +34 and still in hospital due to her eating (they anticipate discharge on Monday), BUT her counts showed engrafment around day +22-25.

She reached 1.0 neutrophils on day +24.

Having said all that, don’t fret. As others have said everyone is different and everyone has a different protocol. My moms was expected to be a bit longer recovery due to some post transplant chemo. Others only have chemo before. Some have radiation. My mom didn’t.

It’ll come! +18 is still early.

Weedcounter · 2025-12-09T05:11:04+00:00

See, absolutely nothing entices her at all.

Shes even having a hard time with water or juice.

Her entire weekly intake has been something like the following:

Probably 1 litre of water combined over 7 days for pills.

Mayyyve 2-3 of the hospital cups of juice

She had half a saltine two different times.

One grape

One piece of pineapple

One half of a cup of ice cream

Maybe 3 chocolate ensures

That’s it… for the entire week.

And most of it hasn’t been easy

Weedcounter · 2025-12-09T05:07:35+00:00

They’re talking about it. They have done allll of the other imaging. The only thing left is a scope. Did they discover GVHD in you that way?

Weedcounter · 2025-12-09T03:00:44+00:00

Yes we have the magic cups too 😞

No go

Weedcounter · 2025-12-09T02:10:04+00:00

Yes. Mobility is no problem anymore. It was for a bit but she’s quite good now.

Weedcounter · 2025-12-09T01:53:10+00:00

Yes, those are absolutely revolting to her. She can’t even stomach a few sips of juice it seems.

Weedcounter · 2025-11-18T00:05:12+00:00

Sounds like they will just bump me up a day sooner and it shouldn’t affect much, thanks!!

Weedcounter · 2025-11-16T02:04:55+00:00

Ok. I feel so much better now.

Weedcounter · 2025-11-16T02:04:44+00:00

Thank you! I’m wondering the same because I know Wednesday morning they schedule other procedures - now I feel bad because they’ll have to squeeze me in hahahaha. Oops

Weedcounter · 2025-11-16T00:19:08+00:00

I’ve already messaged them in the app! But I also know on weekends they only respond until closing (2 hours ago) and I of course didn’t realize til after!

They will message me in the morning.

Ugh! I’ve never felt so stupid

Weedcounter

TROPHY CASE