I had a lumbar puncture yesterday performed by an inexperienced nurse or even an intern medical student. It was all good yesterday except it took a long time. I was told to lie down for 6 hours on the bed to prevent a headache, but there was no sign of a headache, so I didn't lie down for 6 hours straight. It was also good when I woke up this morning, but after I sat for a while and tried to get up, I found myself unable to stand straight. Whenever I try to straighten my back, it's unbearably painful in my lower back, my buttocks, and my thighs. I think the pain is related to the nerve. Now I'm concerned about whether this is a common aftereffect or if the lumbar puncture went wrong.

Recently, my mom (52) was diagnosed with (AML). We still don't know the specific mutation associated with her illness. This diagnosis took us by surprise, as she has always been a healthy woman, in good shape, and rarely gets sick. There has been no history of leukemia in our family. Everything has happened so fast, and I'm still in shock.

Each day has become a fight. She went to the hospital after receiving concerning blood work results. After a stabilization phase that involved tests, transfusions, and treatment for pneumonia, she started her induction treatment last Saturday.

I try to stay strong for her and my sisters, but I’m on the brink of burnout. I need some advice. In the first three days of treatment, she has felt relieved without any major complications, but her red blood cell count has been decreasing rapidly so she started to get transfusions again.

Hi everyone,

I'm a 17 y/o from India. I was diagnosed with B-cell ALL a month ago. This happened at a time when I was preparing for my college entrance exams. I'm currently undergoing treatment but I'm still overwhelmed and disoriented to say the very least. It feels like a major barrier has been thrown in front of me out of nowhere, completely blocking my enormous dreams and ambitions.

I'm new to this journey and hearing the experiences and insights of people who have walked this path before would mean the world to me right now.

Here's some questions at the top of my mind:

1. How was your's and your family's reaction when you were first diagnosed? How did you deal with the initial shock and uncertainty?

2. How did you cope with chemotherapy and its side effects?

3. Was there anything that helped you get through the tough days? Anything that helped in distracting yourself and staying calm?

4. How long did your treatment go on for? Did you have to undergo BMT? How did it go?

5. Does life get normal once you defeat cancer? Is there the fear that things can get bad again? Are you able to commit to long term goals and ambitions once you come out of this phase?

I would love to hear your stories. Your words can give me hope and help me find light at the end of this tunnel. ❤️✨

Please I’m so worried for my momma she’s my world and my grandbabies whole world. She was diagnosed with aml last week and started induction chemo this week 7+3 and doctor said she’s going to need BMT. Since the kmt2a finding. She’s 54 and heathy. I’m so scared I don’t wanna navigate this world without her is there any hope out there she survives this? Please let me know thank you any advice is appreciated

When do the headaches stop after treatment I’m day 6 in treatments and have had constant headaches

I was wondering if anyone else has experienced weightlifting causing AST/ALT elevations.

I am 1 year into maintenance for T-Cell ALL and just started back at the gym last week. My strength is not what it used to be, but it feels great to be back in a fitness routine.

After this first week, I had labs drawn and my liver enzymes spiked (AST 366, ALT 150). All other values in my CBC and CMP are within normal range.

From what I have read, weightlifting can significantly raise AST, but it usually does not affect ALT as much. I have had some fluctuations in my liver enzymes before, but my oncologist has made dose adjustments and they had been stable for the past 4 to 6 weeks until this latest lab.

Hi guys, I’m currently undergoing FLAG DAUNO regimen as an induction therapy for relapsed AML. They expect good results + another maintenance round before the second BMT. All I know about my mutations is thag originally I tested negative for FLT3 and t(15;17). Doctors did mention something along the lines of AML with maturation.

Anyways, I’m 24M, physically fit and able to go through this again. On the other hand I’m struggling psychologically. Partially because it came so sudden, I was 2 years and 7 months past my BMT when I relapsed. I’m thinking since it relapsed after all that, it can continue to relapse indefinitely and a person can go through only 2 BMTs. It’s a hard pill to swallow.

Anyways, does someone have personal stories of survivors with 2 BMTs or is someone a survivor like that themselves? What got you through it, how far out are you, what’s your age, any GVHD, rationale from the doctors as to why it worked etc.?

Any info appreciated.

I was diagnosed with ALL end of May when I had a 4.5 month old and ran my own business. Went back to work bringing bub along after 3.5 weeks despite having an emergency c section but had to quit during treatment. I did the 7 weeks in hospital, then a month outpatient treatment and about to start a 2 month stretch of one week in one out and I’m really just struggling with the loss of control and autonomy. I counted it and between nurses, doctors, cleaners and food staff it’s 20 interruptions every day when I’m in hospital. I’m in my 30s and feel like I’ve reverted to teenage years being checked on. Every 4hrs being asked if I’ve opened my bowels like any human could go that frequently. If I’ve been dealing with a fussy baby and it’s after 7 “have you showered, why not, are you planning to?”. It’s bad enough with no set days or time frame for the foreseeable future with treatment so I can’t make plans and had to cancel my wedding but I am DREADING hospital.

Hi, my husband was diagnosed feb 2025 with T cell ALL, high risk (no significant mutations). The cancer responded to therapy too slow to stay on the only chemo route, so when he became BMT negetive he proceeded with BMT from a 10/10 unrelated donor.

His hospital stay post BMT was rough. I had to stay with our baby in another city, couldn't visit every week because I can't drive. He had fever right after the transplant, had to stay on TPN for a while because he couldn't eat, was diagnosed with CD. After almost a month since his BMT, more than a month since his initial hospitalization, my husband is coming home. Our daughter will be 7 months tomorrow, so it's right on time for us to celebrate as a family.

My youngest brother (26) was diagnosed with AML, FLT3 mutation about 3 weeks ago. Finished I think it’s called 3+7 chemo treatment. He was doing great through it all. Then started a chemo pill. Things have went down hill fast since then. Last few days was building up fluid in body cavity and lungs. Got brought into the icu yesterday cause he’s having a hard time breathing. Last night he was really struggling to breathe and they had to intubate. Now his oxygen is low. Have said the numbers are not accurate due to blood and platelet transfusions. Last I heard is they’re rolling him over so the pressure might help. Praying for the best. Just feels like a nightmare. Anyone familiar with any similar issues? This is all new to me.

I [21F] was diagnosed with CML a little over a year ago, and despite not having a genetic mutation I’ve been resistant to Imatinib, Dasatinib, Bosutinib, and Asciminib, so am having a bone marrow transplant at the end of September. Have any other younger CML patients had a bone marrow transplant, especially while in the middle of school/college? A lot of the resources my hospital gave me are geared towards older adults, and I’m hoping to hear more about what it’s like to live long term afterwards.

Hi guys. Just wondering if anyone here has had to have a hip replacement while they have CML. I've been reading up on it (oops) and it seems that there is a higher chance for complications. I have big anxiety issues and I'm getting more freaked out the closer I get to the surgery, which is on Tuesday. So if anyone has any experience with this procedure while having CML, it would help me a lot to know what you went through. Thank you <3

Can someone explain their journey after BMT? My husband is getting his very soon and I'm wondering what does it look like after that? How often are checkups? Thank you!

I don't even know how to start this but my husband was diagnosed with AML in February and went through aggressive chemo. Yesterday we learned that the leukemia has come back and he has 6-12 months left. I'm 38 and have been with him for 16 years and I just don't know how to cope. I don't even know what to ask for, just advice and stories of spouses who have been through this before.

So the cancer center where I had my SCT, part of the prep work was 3 days before the transplant I received rabbit antigens. The reasoning was they saw success with little to no GVHD effects or reduced GVHD. I was just wondering if anyone else received the same type of treatment pre SCT.

For more context, I was treated in the Tom Baker in Calgary, Alberta Canada. I was diagnosed with MPAL no mutations thankfully. I was part of a clinical trail where I could either receive 3 days of the antigen before SCT and then just the methotrexate injections after OR I could have done 3 days prior and then receive more post 5 days without methotrexate. I personally opted for the 3 days prior just because the side effects sounded (at the time of decision, horrible) and turns out they were extremely horrible during. First day I was so sick, almost passed out in the bathroom, ready to pull that cord to have someone come help me off the toilet. Second day had a massive allergic reaction where I became a human tomato. This one worried the nurses. I never had so many people in my room during treatment, they were in a controlled panic. Day 3 just absolutely sick as shit again.

But honestly, it seems to have worked out for me. I had some mild GVHD of the skin and mouth but that was it. So who's to say. Anyways this long post was just a wondering if anyone else went through this particular treatment. How did it go for you? Did you have reactions or was it "smooth sailing" for you.

Hi everyone, I (22f) was diagnosed with CML at the end of last year. I'm not totally in remission yet but my numbers are looking great and as of a few weeks ago, all of my blood values are looking normal.

I'm going on a date with a really awesome girl this weekend, we met through a mutual friend who sort of knows about my cancer but I've told her not to bring it up with anyone so I don't think this girl knows. I wasn't really planning on dating anyone at all but it sort of just happened.

I'm not sure when the right time to tell her is? I guess I'll need to tell her at some point but I really don't want to scare her. Would love some thoughts. My ex girlfriend dumped me when I got diagnosed so extra stressed.

Hi everyone. I had bone marrow transplant last summer (ALL leukemia). It all went well. But I’m pre menopause. Has this happened to anyone else??? I got an ovary removed BEFORE treatment to hopefully save the good eggs left for future fertilization. But…has anyone else done this??

Hello everyone. Do you knkw anyone from CML to blast case like AML.or something? What are the symptoms? I've been a CML patient for 3years now, and been experiencing severe dizziness recently. I haven't seen a doctor for a long time due to it's very far from where I live but I continue my medication. Imatinib 400mg a day

I would love input on my situation, especially if they know or have experienced the same thing. Today, I was honored to have been identified as a match for a patient battling Acute Myelogenous Leukemia and in need of a bone marrow transplant. I am currently 3.5 months post partum and breastfeeding. I want to do anything I can to help, but also fear losing my milk supply and being able to take care of my newborns needs after the procedure. Any input is welcomed.

Hi everyone. My dad was recently diagnosed with CMML at 61 years old after suffering from a mystery illness over the past 8 months. He had been dealing with progressively worsening fatigue, dyspnea, joint pain, weight loss, etc... I personally thought it with MCAS/long-COVID before this diagnosis. He also has the KRAS and ASXL1 genetic mutations and is inflicted with severe leukemic arthritis/polyarthritis.

In short, I would love to speak with somebody who has gone through this or something similar. Particularly, any experience with BMT or managing leukemic arthritis would be so appreciated.

Cheers.

My mom went into remission!!

My spouse is 37Y/M here is his bone marrow aspiration after induction chemo. Please let me know if these look good or should I be worrying?

The distribution of the major cell populations is as follows: Nucleated Erythroid Cells 3% Granulocytes 80% Monocytes 4% Lymphocytes 8%

CD19 +B-cell precursors with abnormal immunophenotype (CD10+ (dim), CD19+, CD22+ (dim), CD24+, CD34-, CD38-, CD45+, CD66c.123-, CD73.304+, CD81+, TSLPR-, TdT- (small subset dim +) are demonstrated: they represent 0.16% of total cells.

CD19+ cells represent 0.28% of total cells. They are plasma cells besides the residual leukemic B-cells

Conclusion: Residual leukemic B-cell precursors are 0.16% of total cells.

I wanted to know if anyone has experience symptoms like me… I know we’re not supposed to be in the sun but when I’m outside for like maybe five minutes and if I get hot, my body starts to itch and it feels like I’m getting poked by ants. Has anybody felt the same or is it just mental? Before I had cancer, I never had this sensation.

My wife’s leukemia isn’t responding to treatment. The blasts are too high. They will proceed with SCT next Wednesday. But she has less than a 20% chance. Idk what I need right now. Did anyone out there survive something similar?

Edit to say she has AML with TP53. 85% blasts not resounding to chemo. She’s been in the hospital 4 weeks preparing for bmt. Conditioning to start today.