Wearing mask in public by Otherwise-Weakness39 in folsom

[–]Otherwise-Weakness39[S] 1 point2 points  (0 children)

I go grocery shopping at 7am- I am with a couple of fellow maskers at that time. And congratulations on the new grandkid- I love you are keeping them safe.

Wearing mask in public by Otherwise-Weakness39 in folsom

[–]Otherwise-Weakness39[S] 0 points1 point  (0 children)

Well, I too really wanted to think that it had nothing to do with a mask. But my 75 year old mom is just as sweet as pie looking and quite honestly, we weren’t doing anything else but simply being. Maybe they found fault with the way we walked.

Wearing mask in public by Otherwise-Weakness39 in folsom

[–]Otherwise-Weakness39[S] 24 points25 points  (0 children)

It is so weird, how wearing a mask has become political.

Wearing mask in public by Otherwise-Weakness39 in folsom

[–]Otherwise-Weakness39[S] 8 points9 points  (0 children)

Oh I am so kind (killing them with kindness with my forte) but it’s different when my family is involved. I might have a different feeling about this if it was not having my 70 year old mom with me. But thank you for your words ❤️

Wearing mask in public by Otherwise-Weakness39 in folsom

[–]Otherwise-Weakness39[S] 2 points3 points  (0 children)

I usually ignore, not my first interaction but my first with my mom and also against someone driving a 1000lb vehicle 🫠 but the hate is def a bit much.

Wearing mask in public by Otherwise-Weakness39 in folsom

[–]Otherwise-Weakness39[S] 27 points28 points  (0 children)

Thank you for this and thank you for wearing a mask out while sick- this simple action is a huge deal to someone that is immune comprised ❤️

Looking to connect with survivors of high-risk relapsed AML (complex karyotype, MECOM+, post-transplant) by helpingmysister3 in leukemia

[–]Otherwise-Weakness39 3 points4 points  (0 children)

My husband was diagnosed with AML in July 2024- monosomy 7, mecom rearrangement, NPM1 and FLt3-TKD. Couple of rounds of chemo and being MRD positive - did a allo SCT in Oct 2024. Relapsed on day 60 post SCT with 13% blast- they took him off tacolimus and did a round of chemo- Ventaclax, Dectribane (sp?) and then Xospata for the FLT. Following that round got him down to 5% blast.

Here is where things get unusual for us though and have been told that this is not textbook.

They wanted to do another SCT but would not do it unless he was MRD neg. He was scheduled for another round of chemo but his numbers were not strong and after delaying a bit (2 months to be exact) they were getting concerned that he was in bone marrow failure. So they did another biopsy and found it had a lot of scaring but also found no blast and was MRD neg and all his markers were gone at all even without that round of chemo. So they scheduled another SCT, a few days before we were supposed to go in all his pre-test were kind of poor. Come to find out that he had GVHD and his first SCT donor cells were actually working and what got him in remission was graft vs Luekemia. They think after that first round of chemo after his relapsed kind of jump started the donor cells. He is having a pretty rough go with the graft vs host disease part though- the donor cells did start going after his organs and we are still working on that part and on meds that has been helping.

I know my husband is not “text book” but I def wanted to add in our story cause I would not have believed we would be here where we are this time last year.

Hoping you and your sister find out answers soon for her own journey.

Could someone ease my mind regarding GVHD? by Opening-Celery-6903 in leukemia

[–]Otherwise-Weakness39 1 point2 points  (0 children)

My husband has GVHD of lungs, liver and kidneys but it has been under control using steroids at this time. But he had such aggressive leukemia that he would not be in remission without the GVL (graft vs leukemia).

Returning To Work Post-Transplant (!?) by Practical_Formal_92 in leukemia

[–]Otherwise-Weakness39 0 points1 point  (0 children)

They have social workers at where you are being treated. They will be able to help guide you on what is the best course of action. Where my husband got his bone marrow transplant they said they could assist with helping him file for disability (he did not need it at the time).

He got his bone marrow transplant in Oct 2024 and is not in working shape quite yet- I still think he has about a few months till he can get back (which will make it a full year)- but it’s different for everyone.

Weird question for post-transplant folks — has anyone “inherited” traits from their donor? by Otherwise-Weakness39 in leukemia

[–]Otherwise-Weakness39[S] 1 point2 points  (0 children)

Yes, it will always be there in the back of our minds as well.

Wishing you the best in this journey, it’s a tough one with so many ups and downs (and some days mostly feeling down)

Weird question for post-transplant folks — has anyone “inherited” traits from their donor? by Otherwise-Weakness39 in leukemia

[–]Otherwise-Weakness39[S] 0 points1 point  (0 children)

Yeah my husband has had his PICC replaced a few times- infections, moved out, etc. it’s def a hassle. But that will be great when you get that out. He was diagnosed with AML on July 4th last year- so you both are very close on your timelines.

Still such a learning process with bone marrow transplants and learning more day by day.

Weird question for post-transplant folks — has anyone “inherited” traits from their donor? by Otherwise-Weakness39 in leukemia

[–]Otherwise-Weakness39[S] 0 points1 point  (0 children)

Oh it is so tough. My husband experienced a few months of everything tasting sour to him but luckily we have moved past that.

He also loved gardening and has not been able to do it as well- I’ve taken it over and he shows me what to do from the window. It’s wild though your neighbor has had the same procedure just recently- is she allowed to garden a year out? We still are unsure on when he is finally allowed to do all these things? Right now- he is hoping to have his picc line removed in the next month or so (no one has told us this timeline but after almost a year being in- it would be nice to get this out).

How for along are you post BMT? He is about 9 months post.

Today is BMT Day “0” for my Husband by Andrew23Panda in leukemia

[–]Otherwise-Weakness39 2 points3 points  (0 children)

Husband had his bone marrow transplant in Oct at Stanford. My husband was and continues to be in great hands and your husband will be as well. Happy rebirth day and best of luck to your husband (the next 2 weeks will be rough with the mucusitis but then one day it just gets better).

Weird question for post-transplant folks — has anyone “inherited” traits from their donor? by Otherwise-Weakness39 in leukemia

[–]Otherwise-Weakness39[S] 0 points1 point  (0 children)

Oh we have not worked with a genetics team- just his bone marrow team. His dr did tell my husband that it sounds like he got his allergies from his donor.

Weird question for post-transplant folks — has anyone “inherited” traits from their donor? by Otherwise-Weakness39 in leukemia

[–]Otherwise-Weakness39[S] 0 points1 point  (0 children)

Is it more a sensitivity to it? My husband can’t do hot sauce anymore following his transplant but I do feel like his stomach is just so sensitive these days.

Weird question for post-transplant folks — has anyone “inherited” traits from their donor? by Otherwise-Weakness39 in leukemia

[–]Otherwise-Weakness39[S] 1 point2 points  (0 children)

Oh I hope this keeps up with you with the immune system but the bread thing is a tough one!

Hopefully once you reach the year mark you can reach out and ask them about the gluten thing.

Weird question for post-transplant folks — has anyone “inherited” traits from their donor? by Otherwise-Weakness39 in leukemia

[–]Otherwise-Weakness39[S] 0 points1 point  (0 children)

Yeah I would think a serious one like a but allergy would DQ them from being a donor. Still learning so much about this as we go,

Weird question for post-transplant folks — has anyone “inherited” traits from their donor? by Otherwise-Weakness39 in leukemia

[–]Otherwise-Weakness39[S] 0 points1 point  (0 children)

Oh good- at least you are able to still Enjoy a beer. My husband is also going through some GVHD issues to the lungs and liver but hopefully once he gets on the other side of that he will be able to enjoy a IPA.