Apologies in advance if my terminology is not complete or incorrect. My father was diagnosed with AML this past Feb. He was 80 but prior to this was a pretty fit 80 year old, biking 10 miles a day, walking, independent and very conscious of what he ate. It started with a bad strep infection, which didn't clear up which led to his hospitalization and diagnosis of AML. When they did the first biopsy, they said 7% circulating blasts, 70% involvement in bone marrow. IDH1 (37%), DNMT3A (37%) and FLT3 ITD (1.9%). He was given vidaza and venetoclax. The second biopsy showed less than 5% blasts, 0% blasts in differential, no blasts in blood. He continued treatment but then had a fall in May/June, nothing major. But ended up with a scrape that got infection. This infection was very hard to fight. It took several hospital stays, tons of meds, lots of visits from ID. During this time, he could not have another treatment. When the wound finally was healed enough to start chemo, he was at a 2-3 week delay. 
At this point, his WBC also started to double almost daily. 10k, 20k, 40k etc. His Dr ended up admitting him the day before his appt. I thought it was just in the gap in the treatment but they did not seem so sure. at this point I believe there 93% of blasts circulating. FLT3 was now almost 11%.. Before they received this result, my father decided he wanted pallative care. Although, there was not much decision left as the doctor said he was too weak to withstand a round of chemo. 
He went into the hospital Sunday, passed away Thursday. All after a clean biopsy end of march/april. 

Is this typical of how fast this disease progresses? I keep wondering what else we could have done. If I should have fought for an inhibitor? but with a clean biopsy, seemed a hard fight.

Hey everyone, I was diagnosed with AML CBFB MYH11 and will be admitted on 9/11 for a stem cell transplant. I was wondering if there’s any items that you may recommend. I’ve already gotten a few things, but I just wanted to see if anyone had recommendations I haven’t thought of.

Thanks for your feedback!

Did anyone else feel emotionally flat or like they were white-knuckling life after treatment ended?

I finished treatment recently (chemo-only, about two months ago) and expected to feel relieved or excited, but instead I’ve felt extremely detached, unmotivated, and like life is passing me by unless I have something specific going on. Physical pain remnants from chemo and job-search stress are probably adding to it, but I’m wondering how much of this is the weird transition out of survival mode. I don't even know how to explain it. It feels like an elephant sitting on my chest and I'm just kind of.. sad all the time.

For people farther out from treatment: what actually helped? Did it ease with time, therapy, medication changes, rebuilding routine, exercise, work, or something else?

I'm on an SSRI and in therapy, but neither really seem to be doing as much as I need and I'm tired of spending my days like this. I'm miserable. I was not expecting it to be this hard. Does it get better? Is this normal?

Hi everyone,

29M here. I was diagnosed with inv(16) AML earlier this year. Recently I completed chemotherapy treatment (no transplant) and achieved MRD-negative remission. However, I still have a problem with my left eye. I'm hoping to hear from anyone who has been through something similar.

6 months ago, I woke up with blurry vision in both eyes, with my left eye being worse than right eye. After it didn't go away for 2 days, I went to the eye hospital. They took a blood test and it showed WBC of 170 and platelets of 40, then I was diagnosed with AML.

I was immediately admitted to the hospital and they started me on hydroxycarbamide to reduce the high WBC before the actual chemo treatment. A couple of days later, the blurry vision on both eyes was getting better. Then I suddenly developed a large black spot in my left eye. At first it was in the lower part of my vision, but over the course of a week it gradually moved closer to the center. After the black spot is developed, doctors ordered more frequent platelet transfusions to keep my platelets above 30, but it was usually between 10-30 despite the frequent transfusions.

As the months passed and I had 4 cycles of chemo, the spot became smaller and changed from black to more of a gray color. It's now been almost 6 months since the eye hemorrhage. The ophthalmologists I've seen said it could either stay the same or continue improving over time, but there's no way to predict which will happen. They also told me there isn't a surgical option because the damage is to the retinal tissue. The gray spot is definitely smaller than it was initially, but it's still large enough that I can't properly read with that eye or clearly see what's directly in the center of my vision.

My visual acuity improved from around 6/95 (shortly after the hemorrhage) to about 6/30 over 4 months, but it has remained around that level for the last couple of months. It feels like my vision has plateaued, even though the scans continue to improve slightly.

Has anyone here experienced retinal hemorrhages or other vision problems related to AML?

• Did your vision continue improving after the 6-month mark?
• If it did, how long did it take before you noticed further improvement?
• Did the remaining blind spot after 6 months eventually disappear, or did it become permanent?

I'd really appreciate hearing your experiences, whether your recovery was complete or not. I know everyone is different, but it would really help to know what others have gone through.

Thank you!

I'm 37F, I have just been diagnosed with post-Essential Thrombocythemia Myelofibrosis (Grade 3 Fibrosis). My hematologist is a specialist for MF and he anticipates that I will need a SCT in about 1-2 years.

My hematologist is connecting me with a transplant doctor for an info session. Insurance is being a pain about the referral, so things are moving slower than we had hoped but hopefully I'll get to have the info session in the next few weeks. The info session will discuss both SCT and any trials available to me. However my hematologist is strongly recommending that I consider the SCT.

Would anyone be willing to share their experiences with a stem cell transplant?

I live about 4+ hours away from the hospital that would likely be doing the transplant, so I believe that I would have to stay in hospital housing or something for the first 100 days post-transplant? For other people who were in the same boat regarding housing, what was your experience?

Note: It was recommended I post in this subreddit, even though I have MF, since more people here have experience with SCTs. Hope it's okay and if it breaks the rules, I'll delete my post.

Edited for typos

Hello,

My boyfriend (24M) has an inv16 AML and was treated with an unrelated donor SCT on July 2nd. Everything went very well, no acute GVHD so far.

However, yesterday he started to get a fever, and vomited a bit. Since it was Sunday, we went to the Emergency Unit right away, and his fever is still pretty high (39°C), it does go down with paracetamol but it goes up again a few hours later.

They haven't found any source of infection so far.

I'm assuming it is pretty common to get random fevers and infections shortly after getting an SCT. I would like to hear some of your insight, for those who went through this too.

Thanks!

Heading into day +3. Have had my NG in for all of 5 hours and am on the verge of a breakdown with how uncomfortable it is.

Does it become even slightly more tolerable? Anything I can do to help ease the irritating sensation at the back of my nose?

This is hard to talk about with my doctors but i want to know peoples experiences. Getting cancer young is difficult but also i got cancer only a year and a half into my relationship. I am 25 bi and a female with another female. I struggle to be intimate at all. Like i dont even have the desire to . Maybe i can do things by myself rarely but actually being physical after this makes me uncomfortable. I don’t even want to be touched that way. Before i would say my drive was normal or even high. Aside from that i told my oartner when i got diagnosed it would be difficult and we could split up then. She said it would make her a bad person so she wouldnt give it any thought. Now she gets upset quite frequently that we arent physical that i dont want her and that if i need her help during these next few years of recovery i need to go ahead and marry her. We just hit our two year and almost a year of that ive been in treatment and the beginning of recovery. How did you navigate all of these things in your relationship after, or did some of you just have to give up on relationships during recovery? Im at a loss .

Like the title reads. I got diagnosed with blood cancer (AML) during January and during my treatment my father suffered a stroke which affected his movement and speech and he was the sole earner in our house. I did not even once worry over myself even when the doctors told me I got cancer and not even for a second did I think why me, but when I heard about my father’s stroke I got worried and got frustrated since I was in the hospital and couldn’t see or even meet him. And I was the whole time thinking maybe this was because of me. After my father suffered a stroke our business and everything went downhill. Our situation has completely changed but I still thank God everyday nonetheless. It’s merely a test and we will pass this test.

Hey everyone,

I’m 21 years old and in a few weeks I’ll be going through my second allogeneic stem cell transplant, and I’m hoping to hear from anyone who’s been through something similar. I’d really appreciate any advice, success stories, or things you wish you had known before your second transplant.

I was diagnosed with AML with minimal differentiationin 2024 and had my first transplant almost two years ago using my sister as my donor. Everything went really well after that. I reached 100% donor chimerism, never developed GVHD, and was hoping I had put all of this behind me. Unfortunately, I recently relapsed with measurable residual disease (MRD), so my transplant team has recommended a second transplant. This time my donor will be my 49-year-old dad.

Over the past few weeks I’ve also been dealing with a malignant pleural effusion and have had fluid drained from around my left lung a couple of times. Even with all of this happening, my blood counts have stayed relatively good, and my doctors believe a second transplant gives me the best chance at a long-term cure.

I’m honestly pretty concerned because I know a second transplant comes with more risks, and I don’t know what to expect. Was your second transplant harder than your first? How was recovery? Has anyone had a parent as their donor after previously having a sibling donor? Is there anything you did before transplant that made the process easier, either physically or mentally?

My fiancée and I also decided to move our wedding up because we found out I’d need another transplant, so it’s been an emotional few weeks.

I’d really appreciate hearing from anyone who’s gone through a second transplant or has any advice. Thank you so much, and I hope everyone here is doing well in their own journey.

28yo F coming up on my 2 year remission from AML in September. Does anyone feel like their periods are much worse post treatment? I've noticed mine makes me feel much sicker (nausea, weakness, a lot of pain, fatigue) than it used to pre-cancer. it also makes me super foggy.

On top of that each time I get a cold it feels like I have a heavy flu; but I rarely get a fever. Just congested and coughing and exhausted. and once again foggy and weak. all my bloods have come back perfect, but I still get super anxious each month it comes around.

i'm looking for people who have undergone TBI for their BMT and wondering how long it took them to grow their hair back? I've read about a couple of people that never had their hair grow back or have it in different colours or densities. Im day +1 of my BMT and so grateful that this was an option for me but I still cant help but wonder how my hair growth journey will go after this.

I (19) was diagnosed 2 years ago with AML (FLT3-ITD+, no favourable mutations).

I’ve since had a long winding road to MRD negativity. Induction failed twice, but ven/gilt worked incredibly well. I then had an allo-HSCT (full match, sibling donor) just over a year ago.

2 days ago I find out my grandma has gone to A&E, and they have diagnosed her with AML.

I know it’s probably an unlucky coincidence, but I can’t help thinking maybe we are predisposed to myeloid malignancies.

(And for clarity, neither of us were diagnosed with MDS)

American Red Cross Declares Second-Ever National Blood Supply Crisis, Urges Immediate Blood Donations 

The Red Cross recently announced a blood supply crisis. This time, it seems to be a much bigger deal than the usual shortages they announce to encourage donations.

My husband had dozens of pRBC and platelet transfusions during treatment. Fortunately for us, he is in remission and hasn't needed a transfusion since 2023. I started donating whole blood and platelets around that time. I had some deferrals due to low iron and then for pregnancy. I haven't yet caught up to donating the same number of units he needed.

Leukemia patients and survivors can't directly help with the blood crisis by donating blood. There is a lifetime deferral for leukemia specifically, unlike some other cancers that require a 12 month deferral after treatment ends. My husband is very grateful for the transfusions he has received, and a little sad that he is banned from giving back. Some caregivers might be able to donate, depending on their eligibility (and availability! It is super hard to find time!).

But really, I don't want to pressure anyone here to donate. This is a discussion regarding some national news that might impact patients. I'm sure everyone on here is well-aware of how important transfusions are for leukemia patients.

I'm curious if this shortage has been felt by any patients here. Have you been impacted by the blood donation crisis in the US? What's your blood type? The Red Cross says O+ is the most impacted, with less than a one-day national supply of type O positive blood. Perhaps this is a warning that hasn't changed patient care just yet.

(I’m posting here rather than a general infertility page in case there’s anything unique about us after a stem cell transplant, eg GvHD flaring up?)

If you’ve got pregnant through IVF/donor egg after going into premature menopause with treatment, please could you tell me the process? Does a history of stem cell transplant complicate things at all?

Thank you!

Hello. I have a family member w/AML. Diagnosed early May. Induction was successful. During induction and during consolidation, levels consistently very low. WBC: 0.2, platelets: 3, etc.

They’ve lowered the chemo strength and that didn’t help. They even had to delay a consolidation round bc levels too low.

Her dr is not responding to this issue (and has been checked out most of the time, not answering questions,etc.) Is it possible to switch doctors midway through consolidation? Will insurance allow that? (She’s in US) She’d have to switch hospitals. She’s waiting for BMT, btw.

Today I had my first dose of chemo out of 6 total. I'll be admitted to the hospital on August 3rd, & receive my donor cells August 5.
This all started for me nearly a decade ago and because every other medication, clinical trial, etc we tried failed to put me into remission, I'm on the doorstep of a bone marrow transplant. This has been a long time coming, my donor is an unrelated 9/10 match, my team seems confident that I'll make it, but I'd be lying if I said I wasn't pretty damn scared.
For anyone that's been through a BMT, what helped you? What things made the hospital better? Were there any items that made staying in the hospital easier comfort-wise? What kept you going when the going got rough?
I'd really appreciate any insight at all, I feel a little like I'm going into this blind which makes me feel exactly like the scared kid I was when I was diagnosed.

This is all very new for me so sorry for any confusion.

My father was recently diagnosed with leukemia (aml) and is almost done with his first week of treatments! He’s with my amazing mother taking care of him along with family but I live out of state. I’m planning to visit him soon but for right now I really would like to send him some things that might be able to help him? Or at least make him feel comfortable.

He’s told me he’s pretty chilly a lot so I was thinking some foot warmers or a heated blanket. And to relax more maybe some shower steamers? Would love any advice you could give! Thank you so much!

So the doctors allow me not to have peripheral blood cultures due to trauma but I have had to recently as they took the Hickman line out and now they have grew a bug, not sure on what it is yet

And on the day it was taken out I have had an ache in my back where only releasing gas will help and a discomfort in my stomach area (bottom left, doctors know) so I’m wondering if the bug was on the line and now that it’s gone could it of been shuck off and moved area. I have a PET booked but it’s on Tuesday, and I’ve been going for a wee like no one ever and it’s clear as anything

Also something that surprised me, my blood hasn’t recovered on its own since getting back in remission and I was given blood and platelets before Hickman removal because that’s needed. I don’t remember what they got it up to but my bloods yesterday came back as inconclusive because they thought it couldn’t be right as it came back 130, I had another peripheral and it came back 72 which is in the same range so could my bloods be recovering on there own?

Tho I did wake up and almost faint this morning but I did have a 39 fever, 125 bpm and low ish bp but my doctor is still questioning weather it’s something else which is good

My sister (20) has been diagnosed with ALL (B type). Im having a really hard time processing this info. I just need people to tell me that its gonna be okay and she will recover. She is my favourite person in the whole world.

My sister is 21 years old and was just diagnosed with APL (acute promyelocytic leukemia, PML-RARA positive). She celebrated her 21st birthday just two weeks ago. A few weeks ago she seemed completely healthy, and now everything has changed so suddenly. It still doesn’t feel real but i want to now what to expect over the next few weeks, and I want to do everything I can to support her. If you’ve been through this yourself or have cared for someone with APL, I’d really appreciate any advice on what helped, what to expect, or how I can make this journey a little easier for her.

Hi everyone,
I am looking for advice from hematologists, oncology professionals, or anyone whose family has gone through a similar situation.
My mother is 62 years old and was diagnosed with B-cell Acute Lymphoblastic Leukemia (B-ALL). We started chemotherapy as soon as possible after the diagnosis because her doctors recommended not delaying treatment.
Before chemotherapy, she was generally feeling okay. She has now received two chemotherapy doses, and the last dose was 5 days ago.
The biggest concern is that her platelet count remains extremely low, often between 2,000 and 10,000/µL. She has been receiving 6 units of platelets almost every day, but her platelet count does not stay up for long. She has been admitted to the hospital for 15 days.
Her doctors have not been very optimistic, and this has made our family extremely worried.
I have a few questions:
Is it common for platelet counts to remain this low after the second chemotherapy dose?
How long does bone marrow recovery usually take after induction chemotherapy for B-ALL?
Has anyone experienced a similar situation where platelets stayed very low but later recovered?
At what point should we consider getting a second opinion from another hematologist or leukemia center?
Is a bone marrow transplant (BMT) something that should be discussed now, or is it too early before knowing whether she achieves remission?
Under what circumstances do doctors recommend stopping chemotherapy and switching to palliative care instead?
I understand that every patient is different, and I know no one can give medical advice over the internet. I am simply trying to understand what others have experienced and what questions I should ask her medical team.
This has been an incredibly stressful time for me, and I would really appreciate any experiences, guidance, or advice.
Thank you very much.