r/leukemia

Hi all, my GF was diagnosed with Celiacs disease about 15 years ago and has been eating gluten free ever since. She was diagnosed with AML last year and is now 150 days post BMT (expanded cord blood). I was wondering if it might have “cured” her celiacs at the same time?

Anybody has experience with autoimmune diseases and BMT?

Thx

so my infection markers are coming down 88 from 104 and the doctor said “I can’t lie we are very very very worried. We can’t find the source so we will do a ct scan and then just take your line out and hope”

He then ends it with “again we are very worried you’ve been here for weeks and we’ve not seen improvement” even when I said the infection markers where going down and my blood are kinda improving.

He also said “taking you’r line out is a guess we don’t know if it’ll work” they have grown no bugs from any culture how would they if get to it might be in the line

I can’t have cannulas due to mass trauma and they said a minimum of 48 hours before they could put another line in, and with piclines I get clots easily due to protein s deficiency and that Hickman lines are the only ones that are really safe

He said worryingly and we’re really worried 5 to 10 times

Hello everyone,
I am a 28-year-old male diagnosed with T-cell Acute Lymphoblastic Leukemia (T-ALL).
I am currently in the maintenance phase, and I have just started my second month of this stage.
During my treatment, there were some modifications to the protocol. Specifically, 3 doses of Asparaginase were omitted, and I also experienced several delays during the consolidation phase, sometimes between one to two weeks between treatments.
I am a bit concerned about whether these changes could have an impact on the effectiveness of my treatment or my long-term chances of remission.
Has anyone experienced something similar? Did it affect outcomes in any way?
I know someone with a somewhat similar situation who remained in remission for a long time, which gives me some hope, but I would really appreciate hearing other experiences.
Thank you all, and I wish everyone strength and good health ❤️

HEY guys i hope u guys are doing well so im 19 years old boy and i got diagnosed with AML cancer im just worried will be able to recover or not my parents are pretty stressed out too so please can some tell what phases will i go through doc said i have 3 months of treatment. Please help if possible
Also in my reports my blasts are around 35 percent and HB is 8 percent

Thanks

Any tips anyone have had a consistent headache /migraine middle back pain and ears feel super plugged any tips 😔

Seems like my body runs on spite

i’m still processing all of this and i’m still beyond shaken

I have been posting about my brother ' s treatment related query in the sub reddit from past two years. This community helped me a lot

Thank you for everything

hi beautiful people :)

since my CML diagnosis i’ve been hard on myself about finding a new job. i currently work as an assistant customer experience manager at a grocery store. its very physically demanding and i know for a fact i wont really be able to heal in an environment like that. it makes me extremely sad though because i was recently promoted back in february and when i got the news about my leukemia my body hasn’t been the same.

i’ll be returning back soon i’m just not sure how long i’ll last. i don’t have another job yet and i’ve been applying. the job market is so bad right now. it never was hard for me to get a job but now times are a little different.

what are some jobs i can apply to that’ll be good for my body ? i have a bachelors degree in business administration. i’ve been applying to lots of receptionist , admin assistant , and healthcare jobs. i’ve also looked into wfh jobs but haven’t got as much luck.

eh , i feel so defeated 🥺 i need as much help as i can get.

Hi all, my child received his BMT yesterday. His ANC was around 400 when he received it and his CBC today showed his ANC is still around 400 today. Is this normal? I feel like I have heard he’s supposed to be at 0 when receiving the transplant….just nervous he isn’t dropping like he should and it will affect the transplant’s success. Any insight here? The attending doctor today seemed unconcerned when I asked, but since it’s a holiday weekend here, his normal BMT doctors aren’t around.

My husband is currently on maintenance, I was wondering if anyone ever consumed edibles to help deal with nausea / appetite during maintenance. His oncologist said edibles were fine just not to smoke. He also asked a pharmacist and he said there’s no studies that suggest that thc would interfere with his medication but I am nervous.

We got news yesterday that my dad’s (68, diagnosed with sAML after MDS in June ‘25, underwent transplant in December ‘25) AML has relapsed, 14% blasts on biopsy. Beginning of this week he was admitted for photophoresis treatment for his GvHD, but before he could commence this we got news of the relapse. We are waiting for the rest of the biopsy results. He’s been started on a azacitidine injection + oral venetoclax protocol immediately and they’re planning for a donor lymphocyte transfusion if possible. We are all a bit heartbroken and tired, seeing as my dad’s blood counts never fully recovered post transplant and he was on almost weekly transfusions which was taking a toll on him mentally. On top of this, back in December ‘24 my dad also had a partial nephrectomy to remove a clear cell carcinoma kidney tumour. Bcos his creatinine remains high (the amount of meds he is on post transplant is putting pressure on the kidneys) he can’t have a contrast CT scan so they can’t properly monitor him, which is adding to all the stress.

I guess just looking for ppl with any experiences of the Aza/Ven regimen and words of comfort maybe.

Hi everyone,

I had my transplant on the 22nd of June and I’m still in hospital as of the 3rd of July.

My transplant was a haploidentical allogeneic stem cell transplant a half-matched donor transplant. Because of my protocol, I needed 8 sessions of total body irradiation (TBI) before transplant.

Honestly, TBI hit me hard. After the second session I basically stopped eating. It felt like the lining of my stomach was completely messed up, and I was even vomiting during the TBI sessions. After transplant, things continued to be rough.

The good news is that I’ve now reached 100% donor chimerism, which is amazing and something I’m really grateful for. But physically and mentally, I’m still struggling a lot.

I’m still afraid of eating because of how bad the nausea and vomiting have been. I’ve also had excessive thick/foamy saliva for weeks, to the point where it has affected my sleep and made it hard to drink or eat properly.

When I came into hospital, I weighed 83.4 kg. I’m now down to 67.3 kg, so I’ve lost a lot of weight. They tried putting in a feeding tube, but because of vomiting and my stomach being so unsettled, I ended up vomiting the NG tube out.

At this point, the doctors are hoping to send me home next Friday. Now the main goals are managing all my medications by mouth, keeping food/fluids down, and being able to move around by myself safely.

It has definitely not been a fun ride. I’m exhausted, but I’m trying to focus on the fact that I’ve made it this far and I may only have around one week to go.

Good luck to me and to anyone else going through this.

I’m sitting in the ward rn and I don’t feel brave anymore. I’m pretty young—about to turn 23 and I’m getting my conditioning chemo rn. I just keep thinking about my Dr. saying there’s a 55-60% chance of my 5 year survival. I responded pretty well to chemo, I’m not MRD- but very very low residual. I don’t think I can do this again a second time. To think it’s over just for the chance of a relapse in two years. I had no symptoms to start and I try not to think about how much worse it could have been if they did not find it in the earlier stages

If someone has had a similar prognosis I would appreciate knowing how that went

It was expected to get tired from the meds but i didn't expect it to be that much , i was also recommend sunlight which i just open my window and lay down on the floor

how do i fight the sleepiness because i'm starting to sleep over 15 hours plus 😭😭😭😭

So I'm 17 months post transplant. Had the last of my non live vaccinations two weeks ago tomorrow, was three injections, but 7 vaccines. One of the injection spots was itchy pretty quickly but that has been pretty normal.

The same spot continues to be itchy, but now my opposite shoulder on the back and towards my spine is covered in what looks like hives and is stupid itchy. Of course in my head everything is cancer, but none of my blood tests indicate that, even as recently as last Thursday.

Wondering if anyone has had something like this, couple of weeks delayed response to a vaccination?

It's been hot here too, like +30C for the last week. And the last two days I've been outside doing hard labor for 4 hours a day stacking firewood, sweating quite a bit, so maybe it's a heat rash? But it's been over 24 hours now since that last exertion.

I’m here at OHSU for my second SCT. Just had it yesterday so today is day 1. I’d be down for a walking partner to chat with if any of you are here at OHSU Vista Pavillion, floor 5. My discharge date is 7/25, so anytime before then.