I am the mom whose daughter will have to go through this like you did. I do not know what you have gone through or what she will have to go through when it is my turn, but I think I can safely say on behalf of your mom, and all us moms: You are an amazing person and thank you ❤️. I know it is incredibly hard and no mum wants their child to have to do this. Thank you.
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u/Last-Market6442
Yeah my wife got diagnosed at 29, I was 32. I am traumatized for life no doubt about it. It came out of the blue, like a thunderbolt. 3 years later she is still fighting after one failed transplant , multiple other failed treatments. She is in remission again after some success this past year and is on the path to a second transplant. I am so messed up emotionally that I am numb to the suffering, which makes me feel inadequate as a partner. My mom got Alzheimer's diagnosis around the time my wife got sick and that has been another huge blow. She doesn't know me and can't take care of herself.. I'm 35 now and feel like I will never be the same. So long story short yes I am with you 100 percent!
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u/JulieMeryl09
I'm sorry for your loss 😪💔 I received my donor's cells in 2009. 3DLIs 2010-2011 My partner still has PTSD. It was a lot. My SCT clinic had a required class for caregivers they had to take b4 my SCT. Sometimes I think they had a more difficult time than me. 💞 I was dx with a 4th cancer last year & they just started speaking w a therapist. I've been speaking to one since 2008. My onc didn't let start chemo unless we had a session.
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u/septl1981
I feel this so strongly, I really don't think my dad nor I fully understood everything, even after taking classes because we were just told it was the right choice and everyone acted like it was business as usual. He also passed from complications and even though it was 6 months ago I still can barely even touch my feelings about it all. I had no idea we were near the end. I had stepped back to take care of things at home while my mom took over as primary caregiver, thinking I needed to work a lot and get a lot done so that I could be ready to dive back in when he was back home, thinking I was doing everything right. I hadn't seen him in person for a full week, then I got covid the day I was off to go visit. Then he went into ICU and never came out. I have so many regrets, I wish we would have never even entertained the transplant. It seems so hard to believe when I explained to loved ones that he had no detected cancer any longer but passed away from the treatment. I try to stay on these sites just to tell people to make the most of the time they have while it's here right now.
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u/GuywithBigForehead
So sorry to hear that happen. My gf tells me how rough it felt for her to watch me get my stem cell transplant and would be careful about going out so I didn’t get sick. It was a lot for her at the time, I never realized it until years later when she cracked open her feelings about it to me when we were going through a rough patch.
She did a lot for me, and I appreciate and love her so much for all that she did to take care of me. Even if we weren’t together Id do anything for her.
Im sure your mother was so grateful to have had you care for her and help her with everything, just know you made it more bearable and easier for her and helped her along the way.
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u/StretchCT53
The actual transplant was just a transfusion. Very anticlimactic. The ablation getting there was rough as were the days after the transplant. But for me the worst part was not knowing how weak she would be. She couldn’t sit straight up. Struggled walking. Eventually she regained strength only to then get GvH and ultimately reject the transplant on top of it all. The graft v host was torture. Rash everywhere and was never comfortable. She handled it so well. But then she became transfusion dependent, started falling and the last fall finally got her. She was 54. So yeah, I’m with you. It’s tough.
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u/ComprehensiveCold670
My wife was diagnosed with aml in December 2024. She had a mechanical heart valve in place since 2023 so treatment was very complex choosing the right chemos that were the “safest”. Not quite a stem cell but the goal was a bone marrow transplant. Matches were the easy part. We just kept hoping for remission. Towards the end of her journey she started having fears about it and being naive and uneducated I didn’t know why. Now after seeing others stories I realize it’s a whole battle of its own getting through transplant. Sadly she never made it to that point which I don’t know if that was better or not but the aml was just too stubborn and took her from me December of 2025. I am very sorry for the pain you both went through. It hurts tremendously watching someone you love be hurt and there’s only so much you can do. It’s very defeating feeling. Sending love ❤️
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u/Anders676
Lost my mom to AML five months ago. I understand every f-ing word here, friend. DM me anytime ❤️🩹 I was diagnosed with ptsd and still not right in the head.
In hopeful news- another family member went thru a bmt bc AML and is thriving now. She is 7 years out and best times of life now. ❤️
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u/MuchoGrande
I had a SCT in September. I spent almost a month in the hospital, tethered to an IV pump. It was brutal. CML is brutal. Before the transplant I was receiving blood and / or platelets every week.
I survived lymphoma in 2000. I had chemo and radiation. It was a cakewalk compared to CML.
Bless your heart for being there for your mom.
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u/Hihi315
I had a SCT and that was awful but I got through it. Now a friend of mine is going to have one and I hate knowing what is ahead for them and being so helpless on this side of it - realising how awful it was for my family and friends when I went through it to be so powerless to help. But I also know how much it meant to me to have people I loved bearing witness to my experience - knowing they were cheering me on from the sidelines at my lowest point was a huge psychological support.
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u/Krakenbarel
My gf is at day 58 post transplant, it took 15 months of one hell of a rollercoaster ride to get here. Doctors told me that they refuse transplant patients who dont have anyone in their life to help them go through it, this is how important we are. The post transplant medicine management is a full time job by itself. She’s getting better, but we’re both traumatized.
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u/Limitingheart
I agree. My husband has had two and it’s awful to see someone you love go through that.
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u/BlackCherryMochi
Ugh. I understand how you feel. It is beyond words. Everyone tells you to take time for yourself, I even tell others that, but it feels like a lie. It felt like something I shouldn’t be allowed. I was the one doing research overnight so I could better understand the treatment the doctors were suggesting or ask better questions to advocate. I already couldn’t sleep well due to the anxiety of it all. In between crying fits during the night, showering, driving to and from the hospital, work, home. Never allowing my parent to see me cry. But in the hall talking to the nurse or doctor, sometimes you just can’t help it. You have to be present, you have to be on top of it because you know they can’t advocate for themselves when they are so weak and out of it. And all the while you are watching them struggle, at times it is life or death. You are begging them to fight but then also wondering if death would finally bring them peace from all the torture. You start thinking of the past and how the future will be so bleak without them. And that how you cannot spare one precious moment of the present without being near them. All the questions you never asked, all the memories you may never get to make.
I know I need therapy to overcome what I have gone through and continue to struggle with, but who has the time when you’re balancing your work, life, and caregiving? When do you find time for yourself?
It is all so traumatizing as a caregiver and as a child of the loved one. But I know our loved ones have it worse. The pain, the complications, the unknowns, the constant medications, everything. I would do it all over again in a heartbeat.
You are not alone.
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u/Queen_Kayla1
Will be going through this with my husband soon and our two young kids I don’t know what to do
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u/In_A_Jar12
I was with my husband when he had his BMT for one week. Our 6 months old daughter stayed during this week with my mom, 2 hours away from the hospital. It was rough, my husband could barely walk, I mostly helped him with daily things like laundry and fetching him stuff. He suffered from Mucositis, was vomiting at night, TBI and intense chemotherapy made him very sick. I was still pumping for my daughter and had to do it under a blanket because there was no privacy.
When I came home my mom treated me like it was a vacation. I'm still bitter over it. It was so hard to be with my husband when he went through it, especially when I had to pump every 4 hours and barely slept.
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u/agadora75
I feel this so much. My mom went through PH+ B ALL treatment five years ago with success, but we just an hour ago got the news she's relapsed. I'm scared to death. I'm the primary caregiver and live near Mayo so it's kind of the default for me. My sister's are awesome about supporting from afar, but that's hard. I feel like I just recovered from the first time she had it and now we have to face it again. I came to this subreddit right away because I know people here understand and I need to talk to someone so I can be strong for her. I just hate to see her have to go through this all again.
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u/thatoneguy2252
Welfare of those close to the diagnosed is every bit as important as the person diagnosed. I was diagnosed at 28 and I had water to draw from the well that was being 10 when my dad was diagnosed with terminal stage 4 colon cancer. He was a tough and stubborn guy who lived for another 10 years, but watching him go through it took a toll on me, my 4 siblings and my mom. Had lasting effects that I didn’t work through until I was an adult. You aren’t alone in this feeling.
That being said, like with all things, time will help. It’s such a large overwhelming amount of information, emotions and constant see-saw of stressed and not that it takes time to properly chew on it all.
It sounds like you have a good overview of the stem cell transplant process and how it compares to regular chemo.
For me, 38F (also intermediate risk mutations), I experienced nausea/vomitting for a week after SCT whereas I’d only had a few days of it with induction. Tha was just getting better when I then got mucositis for about 10 days. That was a new symptom for me, and I underestimated how debilitating it would feel to not be able to eat, drink, swallow or speak - it’s far more than just a few mouth sores! But they heal quickly - almost overnight - once neutrophils come up. I was taking zofran and Ativan for the nausea and then dialaudid for the mucositis so spent much of my time in hospital (19 days) after SCT in a sleepy haze, which was honestly the best way to pass the time and recover!
Once out of hospital I gradually regained my strength. For the first couple of weeks I alternated between napping on the sofa and on my bed. Every little task, like brushing teeth, having a shower, having a snack, felt like Herculean effort. But it gradually improved and a few weeks later I stopped needing daytime naps and I started taking little walks pacing up and down the apartment building’s hallways (it was winter). I hadn’t lost my energy in the same way during regular chemo.
After about 7 months I felt like I could imagine getting back to a normal life (before that I’d been worried I’d never have enough energy again). Around 12 months post-SCT I felt like I was back to an average person’s energy levels, though not my previous 100%. I’m now nearly 16 months post-SCT and I feel pretty much like my old self.
The doctors and NPs will be monitoring everything that needs to be monitored, but it’s important to mention every little weird symptom anywhere in the body - keep a running list on your phone if that’s helpful - so that your mother’s medical team have a good idea of her progress and can figure out if the symptom is disease, treatment, infection or GVHD related, or something else entirely. Difficulty breathing or a temperature over 100.3F are really the only emergency things to look out for.
Best wishes!
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u/Legitimate_Return333
Hydrate, hydrate, hydrate! My husband (40) never had mouth sores and I think that helped (I know it doesn't entirely prevent them, but it is a factor). Also, stay as active as possible, even if it's 5-10 minutes of walking at a time. If he skipped a day of movement, he always felt worse the next day. Let her eat what she wants! Cake and ice cream? Go for it. Calories matter most. My husband ate more junk in the few months after his transplant than he ever does lol.
He is now a little over 13 months post transplant and doing great. Id say 90% back to his old energy levels. Strength isn't quite there but it isn't anything that stops him from his daily life. He's been back to work full time since about 7 months post transplant. Brain fog ("chemo brain") is a thing. It's frustrating as the caregiver sometimes but the patient can't help it.
I don't see people talk about it much, probably because it's a little TMI but urgent diarrhea was probably my husband's "worst" side effect after the transplant that he didn't have with regular chemo. He was actually outpatient for the transplant (Johns Hopkins does it that way, you just go in every day for blood work and whatever is needed). They suggested bringing a change of clothes every day because many people can't make it in time, or even wearing depends. Luckily for him he always made it, but there were some close calls! He also had BK virus, which is common. It's basically UTI symptoms that don't go away until white counts come back. He couldn't fully control his bladder while sleeping and was always feeling like he needed to urinate. Again, not talked about much that I see. It feels embarrassing at the moment but none of it is anybody's fault or within their control. It is nice to know you aren't alone though.
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u/DisastrousHyena3534
She may also need total body radiation as part of her transplant prep. My husband did & it was mentally tough on him.
Speaking of, he is one year post-transplant (this week!). He is cancer-free, he had no GvHD. He’s back at work (remote). His mutations were FLT3-ITD & NUP98 & they have stayed gone.
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u/Run_Live_Listen50
So sorry your mom (and your family) is going through this.
I was diagnosed with AML with some riskier mutations in 2023 (10 years younger than your mom at the time). I agree with all that was said in the post above. The pre transplant chemo is definitely harsh. Mucositis and energy are rough. Lean into meds that can help with all of it, but if she can, try to walk a bit every day. Treadmill or the halls of the hospital. Some activity will help with recovery if she can. After going home from the hospital, I had low energy and some other mild symptoms (no taste, stomach upset, etc), but tried to eat to regain strength and keep walking every day. I also crushed way too many TV series. 😂 After about 3.5 months, I went back to work (from home) and found it exhausting for about a month. In fairness, my doc didn’t want me to do it. Everyone is different though, so I feel like I was fairly lucky. Some can take way longer to recover. Keep an eye out for GVHD symptoms. I ended up having some (dry skin, rash, liver numbers too high) show up about 6 months after my transplant and had to go thru steroid and other meds for about 6 months to remedy. Luckily, since then, my GVhD has gone away and I’m back to feeling mostly normal. 2.5 years post transplant and doing well. Best wishes to you and your mom for a successful transplant and recovery.
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u/Zerexdontlie
Your mom really does sound like a fighter and it’s great she has such strong support from you. The transplant process can be tough especially in the first few months while the new immune system is rebuilding, but many people say the 100-day mark is when things slowly start improving. Staying patient with recovery, nutrition and infection precautions helps a lot during that time.
Stem cell science has come a long way, and it’s encouraging to see how many patients regain strength after transplant. If you ever want to learn more about how stem cells are used in different treatments and recovery approaches, resources from places like The Stem Cell Club can also be helpful to understand the broader field. Wishing your mom a smooth transplant and strong recovery. 💛
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u/HollyPhoenix
When she's getting the intense chemo, have her suck on the ice chips they have at the hospital for the entire time the chemo is hooked up. It really helps prevent mucositis according to my doctors, and that was my experience. It can suck if you have sensitive teeth, but being uncomfortable for a few hours is better than having mucositis.
Other people have said eat anything she wants, and I agree - you need calories any way you can get them. I also agree with the people saying to get up and move, and on the days she doesn't want to get up, do some exercises in bed, to keep muscles moving. I wish I had done more. If she's intimidated by walking with the infusion set hooked up to her, have someone walk with her pushing the infusion set. It made me feel off balance to push the infusion set, so one of the nurses or my family would push it at my pace while I concentrated on walking.
Diarrhea was the thing that stayed with me after getting out, because alllll the meds you take have diarrhea as a side effect. It lasted until they started tapering my immune suppressants and the other drugs at day +100.
Don't be afraid to tell them everything that she's feeling, if she won't. They need to know about pain levels, anxiety, everything. Don't be afraid to ask for what she needs to make everything more comfortable.
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u/JulieMeryl09
BETHEMATCH.ORG has lots of good resources for patients & caregivers. 🤞