All of people having MRD positive after induction do SCT ? Is there anyone not doing SCT ?

I was diagnosed with CML last January and it's been life altering, although I've responded well to the treatment and my numbers are low. The side effects from the CML and treatment are brutal and I'm still working through how to manage them. I cannot find info on treatment free full remission anywhere. Does anyone know if there are any patients who are on treatment free remission for good? I know you can take breaks but eventually have to begin the meds again when your numbers spike, but I haven't found info on a complete treatment free remission who has maintained that status for ever.

Thanks in advance!

19 days ago I posted about my condition, TDLR I am 20 years old and in February I got diagnosed with AML NPM1 with no other co-mutation. I did the first cycle of chemotherapy and th result was really good, from 29% to close 0%. Then I did the other two cycles and right now I should be on complete remission.

I got resigned about a month ago without any symptoms, but in the last weeks I got some episodes of insomnia and rage. Last tuesday I did my follow-up meet with my doctor and I told her about this and she said that I can have a partial PTSD, but I don't feel any "mental" problem, the only thing is that a feel lonely sometimes and that I want to come back to my previous life without leukemia.

It can be a "body" PTSD from the stress but not my "mind" or they are normal symptoms? And I wanted to ask something else, I had no organs problems from the chemio, there is a chance if I follow the diet from my nutrition doctor, and when I keep myself active to have a good health again?

So I’m back…

My mother (69f) has AML, FLT-3 mutation. Despite her age, she was approved for a stem cell transplant as she was physically very fit. She is of East Asian descent, and as such it can be much more difficult to identify an unrelated matches donor. As it turned out, no matches donor was found, so my brother (29m) of mixed Asian/Caucasian heritage was the donor.

She got through her 100 days post transplant with pretty much flying colours, and was just starting to feel optimistic when…

She started to have numbness and pain in her legs/feet, and challenges with her mobility. She went back to the hospital on Friday, and was admitted, with CT/MRI scans performed, as well as bloods.

Her white cells are now at 45 from c. 5, so the cancer is definitely back, but the scans suggest CNS/spinal involvement. At the moment, we’re waiting around for them to do a lumbar puncture/further tests tomorrow to see what gives.

Does anyone have any experience of this kind of thing? I’ve done a cursory glance at the medical literature and it seems spinal involvement is Not A Good Thing. Should we be preparing for the worst?

My father (54 years old, from India) was diagnosed with CLL about 3 months ago. Currently he is on watch and wait.

Here are his details:

Only abnormality: del 13q (in 95% cells)

CD49d negative, CD38 negative

IGHV status not known yet

Hemoglobin 13.8, Platelets 100K

LDH normal, beta-2 microglobulin 2.8

No B symptoms (no fever, night sweats, or weight loss)

Multiple enlarged lymph nodes on PET CT, largest ~2.9 cm

Otherwise 100% fit and healthy

Doctor has given 2 vaccination to avoid flu and pneumonia.

My questions:

With these markers (del13q only, CD49d−, CD38−), how favorable is the prognosis?

Does the high percentage of 13q deletion (95%) make the disease more aggressive, even though it’s the “good” abnormality?

Since he has no symptoms right now, how many years do patients typically stay on watch and wait in this situation?

Any lifestyle or monitoring tips from those with similar profiles?

What life expectancy can we expect for him ?

Is it highly manageable desease?

Thanks in advance for sharing your experiences 🙏

Looking for success stories and/or words of encouragement. My three year old was still Mrd positive after induction and this has me a bit tore up because of his/her “odds” being lower. God bless everyone in this forum

My dad was 82 years old, living a pretty normal life until just a few weeks ago. Everything happened incredibly fast, and I’m still trying to process it.

Background: • He had some prior concerns about his red blood counts, years ago there was talk of polycythemia vera (PV) but it was never confirmed, and although the had a DVT his hematologist didn’t think he had it at the time. • He did have an enlarged spleen (up to 18cm at one point), and there were discussions about possible myeloproliferative disease, maybe early myelofibrosis, but nothing definite. • Otherwise, he was doing okay, enjoying retirement, time with his grandkids, and playing tennis.

The Sudden Decline: • In July, he started feeling really weak, with night sweats and loss of appetite. • His bloodwork showed elevated monocytes, high RDW, reduced kidney function (eGFR in the 40s), and eventually a JAK2 mutation. • A CT showed the spleen had shrunk a little (16cm), but otherwise “unremarkable.” Plans were in place for a bone marrow biopsy, and he was about to start on Jakafi for spleen reduction.

The Crisis: • Out of nowhere, he became very sick,extreme weakness, slurred speech, confusion, vomiting, rapid heart rate (Afib with RVR), and was taken to the ER. • His white blood cell count was 230,000+, with blasts everywhere. He was in leukostasis, which was clogging his organs. • He had pneumonia and a UTI on top of it. • He was transferred to ICU, started on cytarabine (cytar), antibiotics, IV meds to protect kidneys (like rasburicase/Allopurinol for uric acid), and eventually dialysis/CRRT as kidney function worsened.

ICU Course: • He needed high-flow oxygen, then was intubated when his lungs couldn’t keep up. • He was on multiple pressors to keep blood pressure stable. • WBC rose to over 300k even with the chemo as he was put on life support. • Doctors confirmed it was acute leukemia (likely AML) and because of his age and fragility, the focus was on stabilizing him, not a curative path.

The End: • Despite everything the ICU and hematology teams did, his body just couldn’t recover. • He passed away surrounded by family, only about a few days after the acute leukemia was discovered.

I’m sharing this because it was one of the most awful and sudden things I’ve ever witnessed. I still don’t know if he had an underlying chronic myeloproliferative disorder that transformed into AML, or if it was truly just sudden onset acute leukemia. Either way, it was fast, brutal, and overwhelming.

Has anyone else experienced a loved one going from “possible chronic” to “full acute blast crisis” this quickly? Or does this sound like it was probably always just acute?

My heart goes out to anyone who has ever experienced acute leukemia themselves or had to watch a loved one go through it. I’m so sorry.

Hi there,

My mom (65) was diagnosed with high risk MDS. She hasn’t had any complications other than bruising and hasn’t been sick at all. Was caught in bloodwork.

Doctors said with her condition a STC can offer an 80% success/curative rate. The alternative, not great. 1.5 years max.

We have an incredibly small family. I’m a 37 year old mother to a 5 year old with some heath problems and a 2 year old.

We live 3 hours away and I’m really struggling with being the first in line caregiver.

She DOES have a sister, but I’m not sure how much she will do for my mom or how much of the caregiving role she can take on. As she lives even farther away (if you drive, 15 hours).

And there really isn’t anyone else. Maybe a friend or two to help on a weekend etc.

I have no idea how I’m supposed to do this with young kids. Of course I will, as I have to, but the thought of having to leave them for 3-4 months absolutely destroys me.

Ideally, in a perfect world, my aunt would come out and if like to swap off with my aunt/act as relief so I can still be present in my kids lives.

Of course my husband would take care of kids etc while I’m gone. His family will help. But mom (me) would still be gone.

I’m just looking for input and if anyone else had a similar situation.

I’m assuming my kids can’t even visit on weekends really? They’re disease factories at their age and we’re looking at a November transplant date.

Any and all input welcome.

Also: I AM very grateful for the opportunity to have such a great curative option. I just am very freaked about the process.

PS: sorry if this sounds insensitive to my mom and what she’s going through. I’m not minimizing that. Just very freaked currently about what this means for the next 6 months.

We’ve tried so many trials we are out of options.

If you met her, besides the adorable bald head, you wouldn’t know she has leukemia. She is funny, present, and we love to do the things we’ve always done - cooking, shopping, trying new restaurants, coloring books, making t shirts, making jewelry, laughing about old memories, etc. It is hard to wrap my mind around that her body is failing her even though her spirit is not. 

We are doing best supportive care. We anticipate less than 6 months left with her. I know this time is sacred and we are trying to make the most of it. I know things are going to get very hard as she starts to really feel “sick.” What kind of mind fuck is it that she is totally mentally here with me now, but will be gone in a few short months entirely out of our control? I am spending time with her and enjoying every minute, but as years go by it will be hard to look back and not have regrets about how I spend this time. Ugh. 

Hello friends. Today i booked an appointment with a doctor to discuss about donating bone marrow. That's the first step. I am so happy about it. I hope I can help someone

My mother has AML and also just diagnosed with secondary cancer in the lungs. She has been on experimental trials but can no longer access these due to the new diagnosis. The doctor has said she will have 12 months or thereabouts. I want to take her somewhere warm for a week to spend with me, my sister and her grandkids. She is still mentally fine but struggles sometimes due to fluctuating oxygen levels. I am thinking we have to go sooner rather than later.

Intellectually I was aware of what would happen, but now it’s happening, I feel numb. I haven’t told my kids of her prognosis.

17 MALE in MAINTAINENCE month 9
Basically since maintainence my counts are normal but energy levels always down. And yes few things to know, i have started light excercise and movement have a good diet also added supplements like B12 and all minerals almost like daily vitamin. My medical team did say you will be able to do almost everything you did before without any major issues.

Please share any experiences old/new/ongoing

If anybody does read this and going through CANCER and is having a hard time i hope the very best for them this is a long long journey dont loose hope until you die.

I’m day +21 of my transplant and I’ve been having some skin issues. They don’t think it’s GVHD yet but potentially folliculitis. For those that have had skin GVHD, how bad was it?

Has anyone had their gut GVHD symptoms return while on steroids? My mom has grade 3 gut GVHD that was under control for the last month and she was slowly tapering off prednisone, but now the diarrhea has returned. Per scary Google, this doesn’t look good at all. Just wondering if I should be as worried as I am, or is this just a case where they need to adjust her meds to get it back under control?

I’m +23 sct. My husband is home back to work as a teacher with my 3 year old who started pre-school and I’m close to the hospital with my mom and my 2 month old son. I’d love for my son to visit but I’m so nervous he’ll get me sick.. has anyone gotten sick in the first 100 days? How are bmt parents navigate? Advice??

They said this was really early and it probably showed up around late May early June. My wife and I are both scared but know that it will be ok in the end. I don’t really have a point to this post just looking to share with someone who isn’t family.

i know sometimes some of us might be in need since we are out of work because of our cancer situations. I was approved right away. I’m just waiting for the check in the ma. Application is easy. When you upload documents click submit for each one.

So, I am supposed to get a biopsy tomorrow for testing for marrow fibrosis and some other cytogenetics testing just to be 100% sure its really just CML.

And I am really scared.
I had a minor surgery on lidocaine and that hurt so so much. I wonder what this will be like.

Anyways, I am super super scared and I just cannot think straight at all.
Worst part is that I don't have access to anti-anxiety medication. I did request it but they said they couldn't.

Anyways, can anyone share their experiences and say how it is?
What to expect?
I know that they will do it from the hip bone, prick with lidocaine first and do the aspiration and core biopsy.

I heard that there is no pain relief in the bone and the extraction hurts like hell. Is it really?

I’m home now. Things are pretty good. Still short of breath. No other issues. Thank god mucositis only lingered for about a week. Definitely needed that pain pump. Anyway. My question. Those of you that have had this procedure, how did you handle intimacy?

Hello, I'm a 31F from Brazil and in April I was diagnosed with AML - KRAS G12D mutation. ​Since then, I have undergone induction and 3 more rounds of chemotherapy. I am still in the hospital waiting for my counts to recover so I can have a biopsy to see if the MRD is negative. My last MRD result was 0.15%, and I'm hoping it goes down to zero. The recommendation is for me to have a transplant, as the acute leukemia could return in the future. Is there anyone here who has been through a transplant? What should I expect? Edit: Added my country

In early 2023, my wife Michelle was diagnosed with PH+ ALL. She spent much of that year in the hospital, and eventually went through a stem cell transplant. There were so many nights she thought she’d never get back to “life” — never be able to go anywhere, or do anything beyond treatment.

Fast forward 2.5 years. Against all the doubts and dark moments, she finally got clearance to travel again. To celebrate, we chose a bucket-list destination for her: Alaska.

This trip wasn’t just about travel — it was a milestone we weren’t sure would ever come. Watching her walk onto that ship, knowing where we had been just a couple of years ago, was overwhelming.

I wanted to share this here because I remember how hard it was to find hope when we were in the middle of it. If you’re still in that place: please know that recovery can bring moments you never thought possible. It may not feel like it now, but there can be joy again.

Sending strength and encouragement to anyone who needs to hear it today.

Her First Cruise Ever | From Cancer to Alaska with Princess https://youtu.be/shUMiLodXrc

39 y/o male w/AML. Just had full match unrelated donor BMT. I'm on day +28 now. Developing some dark red sores on the heels of my feet that hurt to touch or walk on. Need to ask if it's GVH. Also, seem to have really sensitive skin. I'm hot then I'm freezing with goosebumps everywhere. Skin is peeling and flaky. Stomach is irritable and scratchy/hot feeling a lot.

White counts & ANC took a nose dive but platelets and hemoglobin seem to be rising on their own, so got another belly injection out patient to help raise the WBC. I'm staying at a post-transplant apartment behind the hospital for the next 3 weeks just to be safe. Dr says the pill Cellcept will be stopped at day 30, and it might be the culprit for dropping White/ANC counts.

Anyone else have hot/cold flashes on skin w/goosebumps post transplant (or maybe it's Dilaudid withdrawal) and what has everyone's experience with hair re-growth been after transplant?

Busulfan is known to cause permanent alopecia in some patients, and as someone who had hair below their waist before diagnosis I am worried.

Maybe there are oils or regimens that can help with regrowth?

Hope to hear from you all soon and hope you're all doing well.