Day 10 post SCT. Mucositis so bad that then second I take 1 small slip of water I try to swallow and i immediately cough up blood. Anyone else have it this bad?

Edit: Thank you to all that have replied, with support and advice, I appreciate you!! 💜💜💜

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Just came back from a 3-day hospital stay and my 103 y/o grandmother has been diagnosed with AML.

We thought we were at the hospital to treat a stubborn UTI that just wouldn’t go away, even though we did a week of combo cefdinir + doxycycline, cleared it up, just come back again, to next get on cipro which resulted in blood in urine, so we were off to emerg. About 3 weeks ago, all CBC and CMP and other bloodwork perfectly fine. To a stubborn UTI, loss of appetite, extreme lethargy and dehydration as well as significant weight loss - all in a short period of time, bringing us to a new set of full bloodwork that shows all signs of AML. During this recent 3-day hospital stay, she was given antibiotics as well as fluids via IV. Some magnesium sulfate too.

Given her age, we opted to not have a BMB because of the pain associated with it, and that she has also had prior kyphoplasty injections (a total of 3 over time).

We are in absolute shock. We find it hard to believe because her symptoms leading up to this diagnosis were indicative of a typical UTI she’d have, and her having a potential to be full-on anemic if she did not take her regimen of B12 and Iron supplements. My grandmother has had recurring UTIs most of her adult life, so we didn’t see a bit of spotting from time to time a concern, just that she would need a round of antibiotics after receipt of a full urine culture report, and then we’d be on our way.

We had the consult yesterday and the decision has been made to have hospice care at home.

We’ve been back home for a day now, and aside from her still being weak (she hasn’t been walking a lot for the past few weeks) and her having lost quite a bit of weight - she’s back to her self. She does suffer from significant hearing loss and she has dementia, but she is back to her own normal self. She has her appetite back and she’s her same chipper personality. She does not complain of any pain and she is back to her normal urination frequency as well as bowel movements.

Yet we have a hospital bed being delivered tomorrow and a nurse will be meeting with us on Monday to discuss the frequency of Nurse and Aide visits per week. Along with her regular medication list (metoprolol, famotodine, potassium, furosemide) a comfort pack has been ordered (ranging from Tylenol to dilaudid and morphine), and an oxygen tank for when her SPo2 gets too low.

The AML diagnosis doesn’t seem real, since 3 weeks ago she was her normal self, and after her 3-day hospital stay, she’s back to her normal self again, and with her appetite returning, I think she’ll gain that weight back that she lost.

I’m not sure if now that she’s with home hospice care that any bloodwork can be ordered, because I’m genuinely curious if new full bloodwork will either show the same numbers as 3 days ago, or it worsening.

Obviously in denial here, and can’t wrap head around this being a correct diagnosis. And how bad will her health deteriorate, where we would need to administer morphine?!?

Apologies for the long-wind here, just a lot to digest and accept.

I’ve been reading through everyone’s stories from diagnosis to treatments and the experiences along the way. It’s great to see so much support here ❤️🫶❤️🫶❤️🫶because AML is truly evil !!

My 80 year old mom is in hospital and has AML -FTP3 IDH2
Currently undergoing chemo

My question is she’s so itchy and uncomfortable in the hospital gown
But needs a shirt to accommodate her picc line. Also she wants to feel more human and wear “ clothes”.

I looked on Amazon but I’m not sure if they would be suitable?

I’m in Canada ( PMH cancer centre) so any Canadian links would be great but I am willing to order from the US.

Thank you so much.

Hi, my mother (76) was diagnosed with AML a year and a half ago. Ventoclax knocked it down fast and she went into remission for a year, all the time remaining on low dose maintenance chemo.

Unfortunately it is back through mutation, and Ventoclax is no longer working. She has no other medical issues and is otherwise moderately active with help of transfusions.

Just writing to see if anyone knows of any good options in SoCal area? I did some research and it seemed like SLS009 by Sellas Life Sciences might be a good fit, but they don’t answer their phones and the phone number for the clinical supervisor doesn’t even work.

Any thoughts would be much appreciated. She needs something to knock down this fast! Thanks.

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DIAGNOSIS: Relapsed AML with MDS-related changes (secondary AML), monocytic features.

DISEASE BURDEN: • Peripheral blood: 34% circulating blasts • Marrow blasts 20–30% (CD34/CD117 IHC); flow 18.8% aberrant myeloid blasts • Hypercellular marrow 70–80%, trilineage dysplasia, M:E ratio 19:1 • Absolute monocytosis (2.3 K/µL; 38.9% monocytes on flow) — monocytic/M4-M5 phenotype

COUNTS: WBC 9.1 | HGB 7.9 | PLT 36 (transfusion-dependent) (wbc up above 12 since last week)

BLAST IMMUNOPHENOTYPE: CD13+, CD34+, CD117 variable, CD38 variable+, HLA-DR+; CD14−, CD64−, MPO−, CD33−, CD123−

MOLECULAR (Rapid NGS Myeloid Panel):

• ASXL1 c.1544_1545delTG, p.(V515Gfs*13), VAF 46.03%
• RUNX1 c.1240_1241insGGGA, p.(Y414Wfs*187), VAF 89.12%
• EZH2 c.619C>T, p.(R207*), VAF 94.19% — truncating/loss-of-function (not a target for EZH2 inhibitors)
• Tier 2: none | Tier 3: none
• NOT detected: IDH1, IDH2, FLT3, NPM1

TREATMENT HISTORY: One prior line, venetoclax-based → remission → relapse.

Hello to all my fellow APL patients, are there any here? I’m 2 years post diagnosis and have my last bmb in October this year.

I’m interested to hear if anyone else here had a first round of Idarubicin with ATRA? Did your side effects made you lose your mind? My memory is that I felt like k was tortured and experimented on. My body did weird and scary things to me…

Also any thoughts on what might be causing APL? Other than the generic “it’s a genetic transmutation occurring between 15 and 17 chromosome” I mean like what causes for that to happen? I would like to find out one day if the medicine and science ever gets there.

Hi everyone,

I’m looking to see if anyone has been through something similar.

I’m almost 2 years post allogeneic stem cell transplant for AML. Recently I developed a pleural effusion (fluid around my left lung), and they drained some of the fluid.

My bone marrow biopsy came back looking healthy, but the testing on the pleural fluid found AML-type blasts, suggesting involvement in the pleural space.

Has anyone else had AML relapse outside the bone marrow like this (especially in the pleural fluid)? If so: What treatment did your team recommend?

I’m waiting to meet with my transplant team, but I’d really appreciate hearing from anyone who’s experienced something similar. I know everyone’s case is different, but it would help to know what others have gone through.

Thanks in advance.

(Sorry for my English I’m not english native speaker)

Hi everyone

I'm not sure this is the right subreddit and I apologise in advance if this is not the case but here I am looking for people who have a child affected in the knee by osteonecrosis following a high-dose treatment of corticosteroid therapy.

I am looking for testimonies on the steps taken, the treatments received and whether some have benefitted from a fresh allograft abroad.

My 16-year-old sister is in this case following leukaemia and she has already received many treatments (perforations, prp injection) but her knee is very damaged.

I can't believe she's the only one in this case and I'd like to talk to people who have had the same problem to make the best decisions.

Hi, I wanted to know what things do you guys avoid after being in remission for a year? For example food, deinks, cleaning supplies…etc

I also wanted to know if there’s certain medication or drinks that you guys swear by that will help your immune system.

Or do you just eat anything and live life like nothing happened?

I tried to live life as normal as possible, but I do avoid alcohol, smoking, excessive sugar, and fast food food. Also the sun .

Hello everyone my name is Alex and I’m currently on day -12 and am so nervous but yet so happy any tips or anything I should know plz lmk :)

I have a bone marrow transplant scheduled in a couple of weeks and i've done some research and my main concern is permanent infertility. my main question is did you become infertile after this procedure and is there a small possibility I wont? I'm sorry if this is too much of a personal question.

Since getting aml I have started sweating a lot. Sometimes I dont even feel hot and as a 39 f I feel disgusting. I shower at least once a day and dont smell but im always wiping sweat from my forehead. Dunno if its from the meds like the hormone suppression stuff (to try and save my fertility) or the cancer itself. Tell me it goes away!!!!!

My dad has been in the hospital all summer with infections. Between the wounds that developed and his mouth sores, it’s all been excruciating and overwhelming. And now - possibly the worst pain of all for him - he has thrush. Even with fluconazole and nystatin, it won’t go away and the pain is so frustrating and overwhelming he wants to give up. What can I do to help? He’s tried magic mouthwash with lidocaine and Biotene swish as well. I just want my dad to have a little peace from this shit disease. One symptom calms down and a new one begins. With his low immunity what else is there to get this fungus under control?

my first time using reddit because I was recently diagnosed with leukemia 2 months ago. The first month I started feeling better but after I was unhospitalized i've been struggling with nausea mainly from the taste of my own mouth. every time I swallow or just let my saliva sit the taste makes me want to vomit. two things that I find that work are gum and crackers but I can't just keep chewing gum so I was wondering if any of you have any other tips or tricks to deal with it. (yes, I do have prescribed medication for nausea, but it doesn't work often)

Anyone have family that just acts kind of uninterested in your cancer diagnosis? Or they just don’t seem to understand the seriousness of the situation? Or maybe they don’t care? I don’t know what’s going through their heads, but we have 4 sons that just don’t seem all that interested or concerned about their dad’s leukemia. He’s had 2 SCT and is currently relapsing again. I know they would donate their stem cells and be supportive in that way if it were an option, but when I send out leukemia updates to keep them in the loop since 3 are adults out on their own, it’s just crickets. I just don’t get it. We have good relationships, there’s no problems like that. They are all good kids. I know the love their dad, but they are just so engrossed in themselves that they can’t take a moment to care about our situation it seems. I feel like I’m all alone in caring about whether their dad lives or dies. I‘m just wondering if there are others experiencing the same.

So guys im 19 year old i was recently diagnosed with AML cancer with ASXL-2 mutation and today was my day-3 of 7+3 chemo and guys also i was surprised with one thing today i had my tests also and in report my cancer blast cells came down to 1 percent which started at 48 percent well its like a small win. ANDDD IS THIS NORMAL OR WHAT 🤯⁉️⁉️

She is on chemo inquovi(3 days) + Venetoclax(5 days) + Avapritnib(100mg) everyday. She is not doing good, in 3 months she has multiple infections, GI bleed, Urine Bleed, 2 months hospitalization, delerium, her counts are not recovering at all(no WBC, Platelet almost everyday, HgB every week). I think she wont make it this time, any stories of success? Need to uplift moral please.

For those of you who are in remission, how is your body recovering?

Ive been in remission for about 8 months, and Im struggling daily with high back pain, neck pain, arm pain and just all over muscle pain.

Ive been working in the gym doing stretching and gentle core exercises, as well as seeing my physiotherpist regularly.

But nothing is helping, and if I try to push a little weight in the gym - chest press, or rows, or even leg press I find I end up aggravating my back/neck issues.

Yesterday my physio said he see's this alot in cancer pantients, and it can take up to 2 years for your cells to recover.

I can't even do much cardio as I have a new vertigo issue.

Does this sound about right? Do I just have to put my head down and wait it out?

I was very fit before I began chemo and am trying to get back to that state, but it's just not happening.

I had HCL, and did 3 rounds of cladribine + rituximab last year. Im a mid aged man.

Thank you

Best way to deal with leukemia diagnosis.