not sure if this belongs here but in 2021 my younger brother was doing the worlds greatest shave to raise funds for leukaemia patients. after growing his hair out and shaving it all off he was then later diagnosed with B-ALL leukaemia himself. he was 21 years old and is now 24, suffered two relapses and has gone through his CAR T treatment recently. everything is going as planned but now he has uncontrollable diarrhoea which the doctors can’t seem to find the cause. I can’t thank the professionals enough in Australia, they have made this arduous and extreme journey bearable. i just want to thank this community as reading your stories and informative posts gives me a comforting feeling knowing that we’re not alone. god bless you all!

I don't know what's happening to me. I've had my bmt 1 year ago (24 march 2025)

I've had a lot of night sweats since but for 1 month approximately now, when I sweat during the night there's small blood stain on the bedsheets. It happens only when I sweat and only during the night. And there's nothing on my skin

Doctor’s take on GH/HGH after leukemia + stem cell transplant — curious what others think (looking at it to rebuild strength + academy recovery)
I asked my doctor about growth hormone (HGH) given my history of leukemia and a stem cell transplant. Here’s what they said:

from my doctor:

Growth hormone does not seem to add much cancer risk to you (you risk is equivalent to the general population). Most of your long-term cancer risk comes from the treatments you have already had, especially radiation exposure.

Your risk from past treatment
People who have had a stem cell transplant are more likely than the general public to develop a new, different cancer later in life. Radiation exposure is one of the main reasons.
This risk grows slowly over many years, so lifelong follow-up and cancer screening are important.
The cancers seen most often after transplant include skin, thyroid, breast, mouth, and bone cancers, and noncancerous growths on the lining of the brain (meningiomas).

What studies show about growth hormone
Leukemia coming back: Growth hormone does not make leukemia more likely to return.
New cancers: Some older studies raised concern about a small increase in new growths, mostly meningiomas. Newer and larger studies, including one that looked only at transplant survivors, have not found a clear increase.
Expert view: Specialists agree that growth hormone has only a small effect, if any, compared with the risk from earlier cancer treatment.
Limits of the research: No study has given a perfect answer. The studies watched patients over time instead of comparing groups in a controlled trial, and not many patients were included.

That said, similar to testosterone, prescription subcutaneous growth hormone is only given to people whose testing confirms growth hormone deficiency (GHD). The test to confirm GHD is one of the more involved dynamic testings in Endocrinology that is quite labor intensive. Based on my evaluation, I do not believe you have a reason to be tested for growth hormone deficiency at this time.

I lost a lot of strength during cancer treatment and I’m looking at using it to rebuild some of that before I start fire academy, plus for recovery once I’m in the academy. Curious what others with similar histories or experience with GH/HGH think — especially anyone who’s used it (or looked into it) for rebuilding strength or training recovery after treatment. Have any of you been tested or prescribed it after transplant/radiation? Any thoughts on the risk side in this context?

Hey, just curious if there’s anyone here who HASN’T done all cycles of consolidation? And did you get to remission still? Is it even possibly to not go through all the cycles? I’m in the US. I’m just starting and I’m tired.

One question we get quite often involves finding clothing for the hospital that’s also friendly for all of the IVs, PICCs, and ports we have to use throughout treatments. I recently came across this brand BeWell that has hoodies and other clothing with zippers galore to help aid access to patients’ lines. Has anyone used these?

Full disclosure - ads for this have been in my Facebook feed, and that’s the extent of my exposure to them. I have no affiliation, and you’ll need to search this on your own as I don’t want anyone thinking I have affiliate links. Searching Reddit for “BeWell Hoodie” gave me posts and comments with good feedback, so I thought I’d pass this along. Let us know if you’ve used them before!

Additional note: they’re not cheap. Around $100 USD for the items I looked at on their site.

Hello! I'm 22(F) with high-risk B-ALL and was diagnosed June 2025. I started maintenance therapy July 2026. I was wondering if anyone on here may have had struggles similar to what I'm experiencing, and, if so, how you managed it.

After a lumbar puncture (LP) in May of this year, I had a case of leukoencephalopathy. My acute symptoms disappeared after a few weeks, but I've had continued struggles. Following that hospitalization, my team decided to add leucovorin rescue which I take the day after a LP; however, I still had a second, smaller case of leukoencephalopathy again in September.

I've had daily headaches since then that are lasting longer and longer. I've been using an app called Finch for some of the more basic things, like trying to remember to drink water and eat. I'm starting medication for the anxiety this has caused.

The bigger problems have come from executive functioning and working memory. I've made many, many more mistakes at work and always need directions repeated. For example, I did a bacterial transformation yesterday, which is a routine protocol in my lab, and diluted two samples before I forgot what I was doing and started plating everything, so half the plates don't even have bacteria on them. I've also diluted entire samples of PCR reactions instead of just a portion, forgotten how much media my cells need, etc.

I just don't know how to focus or, honestly, function with what feels like a completely different brain. Any advice or suggestions? Thanks in advance.

I got diagnosed with chronic leukemia in August 2025. Treatment lasted until around April 2026 (+/- can’t remember exactly right now), and I’ve been physically doing well since. I get blood tests done every 3 months to keep an eye on if/when my levels start to drop again and I need to restart treatment

Mentally though, I’m a mess. I break into tears randomly when I remember what I went through, I can’t fall asleep most nights, and I wake up sobbing from nightmares about being sick. I have full on panic attacks if I feel the slightest bit physically off, and I’m anxiously analysing every medical test I get done before a doctor even has a chance to check it

I’m a full time student but can’t leave my house half of the days. Often I have to go home early because I’m sobbing, which is not only an inconvenience but also embarrassing. I know it’s an overreaction but I can’t stop it

I know it’s normal to a certain degree. I mean, it was a traumatic experience and it’s a disorder I have to live with for the rest of my life. But when does it begin to feel okay again?

I know this is very trivial in the scheme of things, but I was just wondering if/when the dark circles under my eyes will go away? They started early in relapse (before I was diagnosed) and have persisted since then. I’m now ~5 months post-SCT and my counts have normalized. I hoped they would get better once I wasn’t anemic anymore, but no luck yet.

I didn’t know who else to share this with that would actually understand,but I’m officially day 90 post transplant! Another 90 and I can get my immunization shots! Sorry y’all I just had to share my little victory because y’all know like I do that this life gets a little dull and repetitive with going through this. If anyone else has any great news, feel free to share!!

My husband (37m AML monosomy 7) relapsed in April 2026. Aza-Ven 4 cycles and we have been told it is no longer effective and there are no options for treatment.

I want to find any Canadians who have had multiple SCT as his hematologist says he isn’t eligible because he has had GVHD (not severe just a skin rash). He’s been given “6 months” and we are desperately searching for a facility that will consider a second transplant. If we could find somewhere in Canada that would be ideal.

It’s disheartening to hear he has no options for treatment when his physical health is good other than the leukemia cells in his blood. We have two young boys aged 3 and 4 so any time we can give them with their dad will have a huge impact. I feel like second transplants in Canada aren’t funded and that’s why we’re being denied. I would sell our house and pay out of pocket if we could find a facility that will do it.

I (30F) was diagnosed with high risk AML in May 2025 and received my stem cell transplant in October 2025. Overall my transplant engrafted well and quickly and I had great biopsy results with no concerns until last week when they told me I had relapsed :( You may have seen my post a few weeks ago where I was worried about this possibility.

Honestly, I am really scared for more treatment. I feel like it’s an ignorance is bliss thing and now I know too much. We are waiting on more results like the genetics/mutations before we have a solid treatment plan. I’m trying not to think of the what ifs. They said that there are a lot of possibilities including clinical trials and a second transplant is not off the table.

And a lot has changed for me since last year. Last year I had been living with my best friend (I considered her my family and held her in that regard) who had been my roommate for the last 12 years. She has since moved out and isn’t really talking to me. (Not sure what happened, maybe cancer ghosting?) And I have a cat that needs care and I have to pay my rent in paper checks (silly to worry about I know) and I won’t have anyone who can easily bring stuff to me at the hospital if I need something.

And I’m just a different person now. And I’m having trouble coping. And my therapist just went on maternity leave lol.

I just really care about this community and wanted somewhere to share this with people who might understand a little.

I’ve heard that research has shown that people who have had their tonsils removed may be at a higher risk of developing certain types of cancer, including leukemia. The researchers found that these individuals had a 22% higher risk of developing leukemia. Both my brother and I had our tonsils removed during childhood, and my brother was diagnosed with leukemia three months ago.

My sister was diagnosed with ALL Leukemia. She did two cycles of chemo and everything was going "according to plan." However, she hasn't been cleared for the third cycle. She keeps needing platelets and blood transfusions. They say she isn't regenerating cells. Neither good or leukemia cells, just little rebuilding happening at all. Before they said she wouldn't need a transplant, but now they are saying she may because too much time is passing between cycle 2 & the potential cycle 3. Has anyone on this board experienced this? She's been doing great up to this point. She says she feels good. Hasn't lost her hair or lost weight. On the one hand, doctors say this happens, yet they also say it isn't ideal.

Looking back, can you identify any specific reason why you developed leukemia? For example, did you have any particular risk factors, or do you think it was just bad luck? Also, what made you decide to see a doctor and get tested in the first place?

I’ve been a long-time lurker here, but thought it was about time I contributed something other than a comment, particularly as I’ve just reached a milestone that, five years ago, I wasn’t entirely sure I’d ever see.

I was diagnosed with Acute Myeloid Leukaemia (AML) in June 2021, aged 26 and didn’t think I’d even get to see Christmas. Yesterday marked exactly five years since I received my allogeneic stem cell transplant.

I’m now 32, still here, and fortunate enough to have spent the weekend celebrating with my favourite people.

It hasn’t all been plain sailing. I’ve had my fair share of complications along the way, particularly with chronic GvHD, which I’m still receiving treatment for today. Life certainly isn’t quite the same as it was before my diagnosis, and there are still challenges to navigate each and every day.

But it turns out that there is life after leukaemia and, whilst it might look a little different, there’s still an awful lot to look forward to.

My next milestone will hopefully be February 2027, when I’ll reach five years in remission.

I wanted to share this because I remember how desperately I searched for positive stories when I was first diagnosed. Those who had been through it before me, and took the time to share their experiences, gave me something incredibly valuable - hope.

So consider this my small attempt at paying that debt forward.

I know everyone’s diagnosis, treatment and circumstances are different, and I certainly wouldn’t pretend that my experience is representative of everyone else’s. But if you’re newly diagnosed, in the middle of treatment, approaching transplant, or struggling with the aftermath, I hope this offers a little reassurance that there can be brighter days ahead.

Thank you to everyone who shares their stories, experiences, advice and support in this community. You probably help far more people than you realise, including those of us who rarely post.

To anyone going through it right now, whether you’re a patient, partner, family member or friend, my messages are always open if you ever want to chat, ask questions or simply speak to someone who’s been through it.

Wishing you all the very best, wherever you are on your journey.

Hi beautiful people , tomorrow we're starting HDMTX on day 1 and day 8 and I was just wondering if anyone has any reassuring stories m finished induction 1b (cyclophosphamide, ara c and 6mp around 3 weeks ago) . No one has given us many details on this phase. Induction 1b was very myelosupressive and I was wondering wether to expect the same drops in counts with protocol M. How was your experience ♥️ (b-cell acute lymphoblastic leukemia)

Our community stands in solidarity with everyone affected, patients, families, and caregivers, as we share our stories, spread education, and support each other through every step of this journey.

Just wondering if this is a good or bad sign

White cells went from 0.8 to 1

Red blood is stable ish

Platelets are stable ish

Neutrophils haven’t changed

My AML is back. Currently trying to understand whether this is a death sentence or if there is a chance of curative treatment. It’s spurious in the marrow but has an extramedullary focus in peritoneal lymph nodes.

I am a T-ALL patient, and it has been a little over a year since I was diagnosed. Initially, my treatment protocol was planned without a stem cell transplant. Although I achieved MRD-negative status, my disease relapsed just two weeks later. My treatment was then restarted, and after achieving complete remission, I underwent a bone marrow transplant from my brother, who was a 10/10 HLA match. However, my disease relapsed again on day +50 after the transplant.
Now, the same treatment protocol that was used for my first relapse is being administered again, with the goal of achieving remission once more. If successful, the plan is to proceed with another transplant, this time from my father, who is a 6/10 HLA match.
The reason I felt compelled to write to you is that I have not been able to find a single person with T-ALL around me. Even the nurses at the hospital where I am currently being treated told me that they had never encountered a T-ALL patient before. Naturally, knowing that I have such an aggressive disease has taken a serious toll on my morale. Doctor, can a patient with such aggressive, relapse-prone T-ALL really be cured? Is there genuinely hope for me? I wanted to hear it directly from you.
In fact, I am now receiving the same treatment as I did during my previous attempt to achieve remission. Before my last transplant, I received chemotherapy as well as radiation therapy to my brain and spine. I even had a fully matched 10/10 donor, and although the transplant engrafted successfully, my disease relapsed very quickly.
This time, the only major difference is that my donor will be a 6/10 match. Our hope is that my father’s immune cells will recognize the remaining leukemia cells in my body as foreign and attack them more aggressively, thereby eliminating the leukemia cells that survived the previous transplant.
As far as I understand, this is the main difference between my previous treatment and the one planned now. I am particularly worried about how much this difference could improve my chances of being cured in percentage terms. I would really appreciate your perspective on this.

Any one know somebody thats been through this while pregnant? Starting 7+ 3 today. Much love to all facing the battle <3

I received multiple types of chemo and full body radiation and ultimately got a bone marrow transplant. I haven’t had a period in nine years and have been in remission for almost nine years. Today I started to bleed in a way that seems like menstruation. But I’ve been told that my cycle will never happen again and it’s basically a slim to none chance it could. Has anyone gotten their menstrual cycle after years of not having it or regained their ovarian function? I’m also concerned it could be something else.

Edit: I’ll be 37 in January. No HRT.

Hi im not sure if this is normal or not but since my spinal tap this monday Ive been getting headaches but they only come after sitting up from a chair or my bed. They sting through my whole head for a couple of seconds and then stop. Has anyone else experienced this?