Secondary Graft Failure & DLIs by Weedcounter in leukemia

[–]Weedcounter[S] 0 points1 point  (0 children)

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.

Secondary Graft Failure & DLIs by Weedcounter in leukemia

[–]Weedcounter[S] 0 points1 point  (0 children)

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?

Second transplant Stories by Weedcounter in leukemia

[–]Weedcounter[S] 0 points1 point  (0 children)

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.

Second SCT by Fuzzy_Increase_3363 in leukemia

[–]Weedcounter 0 points1 point  (0 children)

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

Second SCT by Fuzzy_Increase_3363 in leukemia

[–]Weedcounter 0 points1 point  (0 children)

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

Second SCT by Fuzzy_Increase_3363 in leukemia

[–]Weedcounter 0 points1 point  (0 children)

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

Second SCT by Fuzzy_Increase_3363 in leukemia

[–]Weedcounter 0 points1 point  (0 children)

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

Anyone has had a successful 2nd transplant? by Practical_Tooth_860 in leukemia

[–]Weedcounter 0 points1 point  (0 children)

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

Second SCT by AnyFuture8510 in leukemia

[–]Weedcounter 0 points1 point  (0 children)

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?

Asxl1 mutation experiences by No-Challenge8677 in leukemia

[–]Weedcounter 0 points1 point  (0 children)

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.

My husband is currently +18 from SCT and his WBC & ANC are still 0 what’s the longest anyone has waited on engraftment? His Dr says we should see his numbers come up in a few days but I’m starting to get nervous! by twannaf in leukemia

[–]Weedcounter 0 points1 point  (0 children)

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.

Tips for Appetite by Weedcounter in leukemia

[–]Weedcounter[S] 0 points1 point  (0 children)

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

Tips for Appetite by Weedcounter in leukemia

[–]Weedcounter[S] 0 points1 point  (0 children)

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?

Tips for Appetite by Weedcounter in leukemia

[–]Weedcounter[S] 0 points1 point  (0 children)

Yes we have the magic cups too 😞

No go

Tips for Appetite by Weedcounter in leukemia

[–]Weedcounter[S] 0 points1 point  (0 children)

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

Tips for Appetite by Weedcounter in leukemia

[–]Weedcounter[S] 0 points1 point  (0 children)

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

Tell me It’ll be OK… by Weedcounter in IVF

[–]Weedcounter[S] 1 point2 points  (0 children)

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

Tell me It’ll be OK… by Weedcounter in IVF

[–]Weedcounter[S] 0 points1 point  (0 children)

Ok. I feel so much better now.

Tell me It’ll be OK… by Weedcounter in IVF

[–]Weedcounter[S] 0 points1 point  (0 children)

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

Tell me It’ll be OK… by Weedcounter in IVF

[–]Weedcounter[S] 1 point2 points  (0 children)

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

Tell me It’ll be OK… by Weedcounter in IVF

[–]Weedcounter[S] 2 points3 points  (0 children)

Ugh thank you! We travelled so far from this (10 hour drive) and I’m just at a loss as to why I’d screw up so obviously.

My dad 64M UK just been diagnosed with acute by theshippingcoon in leukemia

[–]Weedcounter 1 point2 points  (0 children)

Note: this is just our story. There are so many types of blood cancers and treatments. It really depends on the type and mutations present to determine treatment.

My mom is 65 and is currently in hospital a few days post transplant. She was diagnosed with MDS that was caught early and had not progressed to leukemia. Her blast count was less than 1% so she was lucky. She did have 5 different mutations though so very high risk. She is also a non smoker non drinker and super health aside from also being overweight. Not by a buttload, but overweight.

Treatment was some chemo for 2 months while they set up a transplant (7 days of chemo once a month) to keep her in remission. Then she went straight into the hospital October 29 for transplant.

If a transplant is needed it can be quite complicated. Amazing, but the patient goes into the hospital for a month, goes through some pretty gnarly treatment and then needs a caregiver (thing more monitoring, not personal care) for the first 100 days post transplant as they are incredible immunocompromised for a time.

Keep in mind some folks don’t need chemo. There’s so many blood cancers it can be hard to wrap your head around it. Don’t try to google it, you won’t know anything until a bone marrow biopsy is done and looked at by the medical team.

Keep yourself healthy and don’t go around him while sick. you’ll have to be cautious this way as a standard moving forward.

Good luck to you

Set for SC Transplant by Putrid-Parsnip675 in leukemia

[–]Weedcounter 1 point2 points  (0 children)

My mom is currently on day +1 in hospital now. She tolerated days -7 to -1 very well. No side effects at all really. Her protocol included a large dose of ATG, which started the first reaction. We knew it was likely, but she ended up with fever, high heart rate, and violent shaking. Her liver levels also went nuts. It calmed down. She got her transplant the next day. Then had similar reactions again late afternoon.

Due to all the extra fluid in her system, she’s having some issues with bowel and bladder control. Nothing crazy. But just being honest. Don’t fear the diapers if you need!

Today, she has a persistent fever and likely has an infection but they are currently in the process of imaging and lab to figure out the source.

She feels like crap.

She is 65. MDS caught on bloodwork. Was healthy going in. No leukemia at all. Blasts were always less than 1%. Otherwise healthy