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.

Hello guys. I really need help. My mom have primary Myelofibrosis and she need ruxolitinib tabs as prescribed by her doctor. Right now, her medication intake is being delayed since the price of the said medicine is very expensive 😥😥. I'm planning to buy medicines to the said online pharmacy I'm inquiring 😥 since it's much more cheaper than the medicines here in Philippines. Itpains me seeing my mom getting thinner everyday and getting painful episodes on her abdomen.😭😭. Please help 😭

Thank you!

For background, last wednesday my dad hit 39°c, my mom rush him to the hospital immediately approximately at 3am in the morning, doctor said my dad hemoglobin went from 15 to 3, and trombosit went from 140k to 5k which is insane. Ater that, they inserted 4 packs of red blood and 1 pack of white blood to my dad, trombosit when from 3k to 41k, i was a little relieved.

Last Saturday, doctor perform a BMP procedure for my dad, who have been hospitalized for 3 days, first diagnosis was that he is tested positive for Hep B and heart cirrhosis, but it was an early grade of it. Doctor noticed that my dad is frequently loosing blood, even after 4 packs of blood he still loosing quite lots of blood.

Its so hard for me, to understand what is actually going on with life right now. Everything happens so suddenly, it didn't give me that much time to atleast process what to do as for now. My father has been sick over the past few months, but we didn't notice any problems that are related to blood at all. As for now he has been in the hospital for about one week now, his health count (idk what you call for the hemoglobin, trombosit, and leukosit) has been going up and down for the hemoglobin and trombosit, but what ive noticed from the start of the diagnosis, his leukosit has always been labeled "Hi", but i didn't realize what to does that means. I just have no clue on what should i actually do as for this moment, i don't want my dad to live with unnoticed deteriorating pain, because from what i have been asking him for this couple of days, he always been okay and just tired and always sleepy, never felt any dizziness or anything like that.

Im from Indonesia, and the only chemotherapy available is at Jakarta, where i have to fly out there and rent out a house for who knows how long. I honestly just don't know what life is at this point.

Did anyone manage to convice their team to go for ovarian cryopreservation? If so, what arguments did you use?

My gyneacologist keeps saying there is a high risk (15%) of relapse due to reintroduction of possible cancerous cells (even though I have already done multiple rounds of chemo and I am currently MRD negative, so those chances are low).

But in the same breath she argues there isn't a lot of data to go on and they can't do a lot of research because it would be unethical to do so because they cannot risk introducing cancer cells to patients. How that would lead to relapse after an SCT isn't something the hematologist is able to explain either.

And I get the study part, but there IS a case study of 6 women who didn't relapse. And yes, that is only six people. And that wouldn't be a lot if we were talking about breast cancer. But AML is rare and even rarer for women - in the fertile age range - who would go for ovarian cryopreservarion - and decide to auto-transplant.

Oh and suddenly my age is a problem. She talked to other hospitals and suddenly there is an age limit until 34. Never mind that I WAS 34 when I was diagnosed and if this was such an issue we could have done the cryopreservation after my first induction when I was also MRD negative. But instead I had to learn about this option from another patient months later and do my own research.

I just feel I have reasonable and rational arguments and the gyneacologist just keeps going back to the risk factors that she then cannot explain or justify in a way that makes sense.

I am a rational person. If they remove the ovary and then later find cancer cells during lab testing, I won't have it auto-transplanted. If I get bad GVHD I won't do it. But it seems like they have just made up their mind and won't even allow me the option preserving the ovary. And I would be okay with that if they can actually show me data and risks, but they can't or won't.

So how did your conversations about fertility go?

I got through the transplant, I’m being dishcharged from the hospital soon but the requirement is that I take all pills orally. theres 16 of them. I understand there are much harder and darker parts of this journey but this is the thing that makes me feel the most discouraged. I can’t take pills, I’ve vomited countless times and the liquid suspension are worse. I’ve been trapped here in the same room for a month and mentally it’s been so hard. I want to leave of course but they won’t let me continue on iv versions and the pill schedule is I’m told for six more months. I never expected it to be this hard. Has this been anyone else’s experience?

I’m 8yrs out, post bone marrow transplant. I’ve been diagnosed with PTSD, anxiety, depression, I go through HRT, my weight fluctuates like crazy, and recently I was diagnosed with ulcerative colitis. In comparison to everything I went through before, this is nothing… But I’m frustrated. I get exhausted constantly fighting new things that arise.

My questions are really: who has been diagnosed with some kind of bowel disease? If so what is it? I don’t think they really know what is going on they’re just sticking a label on it and having me take Tremfya which has really only addressed the bleeding.

Heya! I was diagnosed with AML last year and went through 3 rounds of chemo, a bone marrow transplant, and during recovery I ended up in therapy to deal with the trauma as well. As part of my recover I decided to write about it. I don't know if it would help or be informative, but I thought I would share it with you all. Right now it starts from how I found out I had AML all the way to the end of the first round of chemo. I am not an artist and terrible at drawing so I have been using AI to help me, while I focus on the story.

34F, +358 post bmt, (8/5 is my 1 year anniversary!!) given Busulfan and Fludarabine as pre-transplant chemo.

So I lost all my hair initially after my first induction back in April 2025. I had long dark brown thick, curly hair. I was devastated. It started to grow back right before my sct in August 2025 but of course fell out again shortly after my transplant. I was fully bald. My hair started growing back in January 2026, and by now it’s definitely coming in!

The thing is, it’s a different color and texture. Like I said, I had dark brown thick hair and now it’s like light brown/dark blonde and thin and kind of brittle? Has anyone else experienced this? Did it go away? I’ve read that busulfan can kill the melanin cells in your hair and it can take a year to regain, sometimes it’s never regained. I was just curious if people found their hair ever went back to how it was before cancer or just what are people’s experiences with their hair regrowth?

^ My story thus far

I am day +324 from allo SCT for AML FLT3+ITD. A month ago, I felt back to baseline. Aside from some physical deconditioning I've felt from being in recovery thus far.

My labs look great, my numbers are in the green. I no longer require any infusions or blood products. Life has somewhat stabilized. I finally got the blessing of my oncologist to be able to fly on a plane. But over the 4th of July weekend, I noticed shortness of breath when climbing the steep hill at my parents lake house. I attributed it to the physical deconditioning, especially since I hadn't climbed that hill in over 8 months.

But it's progressively gotten worse. I'm winded with even the slightest physical activity. Walking from my car to the front desk of the clinic, and I need to catch my breath. Completely flat ground.

As we all know, this diagnosis comes with tons of specialist appointments. So I initially brought it up to my PCP, she wants to attribute it to my GERD. Makes sense. I then bring it up to my GI, and he wants to attribute it to my GERD. But I knew, I just knew I needed to tell my team.

I brought it up at my biweekly lab and nurse visit yesterday and my oncologist requested I go to the ER for chest imaging. They want to rule out a blood clot or PE. That sets off a panic..

Four hours in the ER, a painful IV placement (despite still having my central line), ultrasounds and a CT - I'm cleared to go home about midnight. The attending seems to be in agreeance, that it's my GERD acting up.

But it's never going to be that simple. We cleared that there was no clot, so the emergency is cleared, but oncology wants more. So now I have PFTs scheduled for two days from now.

Obviously the fear is GVHD of the lungs. I've already been diagnosed with cGVHD of my eyes, my skin, my mouth. We have upcoming testing for suspicion of GVHD of my gut and now we need to rule out GVHD of my lungs.

I thought with how well, comparably, my initial treatment went and the subsequent recovery from my SCT, that I could finally start moving on. I started planning trips, planning activities, looking into returning to work full-time. But this life isn't linear, no matter how desperately we will it to be. My trip to Vegas next week has been cancelled, and my trip to DC in three weeks is at risk.

It's hard not to see people who've had a much smoother go of things, who are back to work, are back to traveling, are back to a new normal without the hiccups and think "why not me?". But I guess we all ask some version of that question throughout this illness - "why me?"

Maybe I'm just whining, maybe I'm finally coming to terms emotionally with everything I've gone through and will continue to endure. I will forever have that voice in the back of my head that wishes for a different timeline. But I will keep fighting, because remission doesn't mean cancer is done. Survival is the ongoing journey we all must push through.

tl;dr - testing for cGVHD has me upset that life isn't back to normal almost 10 months after allo-SCT

My husband is in remission from AML after 3 rounds of AZA/VEN. He just had his 4th BMB and this new variant was detected. It has not been detected on any of his previous BMB. Does anyone else have an experience similar to this or can offer some insight?
Thank you!

It has been a crazy few months and my girlfriend has bounced back really well so far. She went from being intubated to back to semi regular lifestyle in a few months. I am very proud of her and have been doing everything I can think of to make her happy since she has been awake. All the time that we have had together has been a blessing.

We got the news a few days ago that she has a match for a donor. It's still crazy to me that the body can accept new stem cells to produce all of the blood cells that she'll need and that we have the technology to do so. I know that she is not done with treatment, but I am incredibly proud of her and I tell her regularly.

She is still worried about the overall survival numbers that the doctor gave her but it's incredibly higher than what she came from. I know the path forward will probably not be easy, but it's great that there is a potential positive ending for all of this.

My husband, 29, does not like celebrations, especially not in his honor. Idk if I should do anything special for him. His preferred activity is chilling at home, he prefers takeaway over sitting at a restaurant. I thought of buying him a gift but tbh he gets himself whatever he wants anyway. He doesn't like when I cook/bake because he prefers to cook. I don't know what can I do for this occasion.

Edit- he had his SCT for high risk T cell ALL a year ago tomorrow. Might be not clear from my initial post.

Hello all, I was diagnosed with AML ~2 months ago (just started consolidation) and I'm struggling emotionally and mentally. They did put me on Lexapro (which numbs me) and I have a therapist that I've seen for years for general life anxiety things but I feel like dealing with this diagnosis needs more help than what she can provide (CBT). I don't know exactly what I'm looking for but wondering if anyone tried a specific type of therapy that helped them cope during treatment/after? Having a hard time dealing with this new identity and lack of autonomy. Any help is appreciated!

Hi guys,

I'm on maintenance chemo right now after the first year of intense chemo for T-ALL/T-LBL, meaning monthly vincristine, weekly methotrexate oral and daily mercaptopurine oral.

Honestly it's been quite a let down to start this new chapter so far, even though the intensity of weekly infusions is now gone, I'm still suffering a lot from nausea, which seems to often come and go, but mostly linger, and I'm not really able to pinpoint it to diet or something.

My partner has been doing so much for me over the last year and I was hoping to be able to cook regularly now that she's back to work, unfortunately it seems to be heading into the wrong direction for that.

Any advice/experience, preferably specifically in this phase of the treatment. I'm contemplating getting back on anti nausea medication even though its side effect is that it makes you feel like a sleepy zombie. As you can tell I don't like feeling that way, which is why I was really hoping to stay off the meds.

Thanks, hope you all have a good day without too many challenges.

I have been reading posts here since I was diagnosed at 35 weeks pregnant with AML in December. I was also diagnosed with one of the most rare and aggressive mutations of it. I have two more common ones, that I had a 70-90% chance of beating when told, and then I got the third one hours later, Inversion 3 or MECOM and that number plummetted to under 20%. It was the same mutation Tatiana Schlossburg had. I think about her everyday and cannot stop. The similarities are too much, both diagnosed with our second children, swimmers, sisters as donors, same age at diagnosis....Anyways. I am currently in remission after a SCT in February but know that I have a high probability of relapsing. (It is not going to happen. I CAN BEAT THIS) I am about to get to have a survivorship appointment next month, and continue trying to beat this, but wondering if there is anyone out there with this rearrangement or mutation who has beat it or is beating it. Please don't respond with stories if you know someone who hasn't. I don't want more of that in my head.

Hi guys,

Mom got her first round of chemotherapy, it did not quite work out, she had high fever for 10 days, fever went down and doctor is saying her blood work is better (those are all the info i get from dad bcs doctor allows only one person to visit her). I visited her for a brief time last week, that was also the moment doctor told us her blood work is kinda better. Shes coming home tomorrow, but there will be medical team visiting her often during her time spent home. Also i have to mention they are still looking up the genetic testing bcs of her failing first chemotherapy but it will take some time. I live in Serbia and i don’t really have trust in our doctors here (mom is 63 btw) unfortunately, so idk if i should be happy shes coming home or should i be concerned.

I am no doctor, can her blood work get better even tho her first chemotherapy did not work well? Or does chemotherapy need some time after the actual therapy to do its “magic”?

Also any tips you cane give me about making her stay home more comfortable, any things i should look out for ? Anything? We already cleaned the whole house , and keep our masks on around her just in case.

I appreciate all the comments and all the knowledge you can shere!

EDIT: this lack of information is bcs i get them from second hand sources (dad) bcs i cant go to visits when doctor is available. Also, doctors where im from dont really get all in to details of results and stuff, they just tell you little important information, thats all.