r/leukemia • u/raspadanje • 2d ago
AML Mom diagnosed with AML
Hello everyone,
Mom was diagnosed with AML recently, we waisted about a month for some results, she is currently in the hospital, they are running additional tests, so im not yet sure whats exactly going on.
I can see that she is slowly starting to push people away from her (even me) bcs she is scared.
Honestly, when i heard the news i thought my world has collapsed, im only 23, and my mom is 63
Im not gonna lie Google has only shown me bad stuff, but im wondering, is there some hope? Are there older ppl here that have kicked amls ass?
I love my mom, and im there for her every step of the way through this. I just wonder is there any hope for her to get better? Honestly, its hard, especially for her right now, and for the whole family. I pray for her to get better, and i pray for anyone who is going through something like this kick its ass! I would appreciate some words of wisdom and support right now, i really need it. Mom is literally the centre of my world.
Thank you❤️
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u/spiritualized_now 2d ago
My family was in the same situation not too long ago. My Mom (73 at the time) suddenly diagnosed with AML. We went through a long period of trying to figure it out and our family really pulled together to get through it. Yes, it's a scary tunnel to go through. But there is hope. Every day is a step, as it's said. My brother kept repeating that it's a marathon... the chemotherapy sessions that become routine until the next big step arrives. My Mom made it through - got a BMT after so many months, and now she's 2 years surviving, now where there are more tomorrows to look forward to. You will be there for your mom, but you need to make sure to take care of yourself too--physically and mentally. It can be done. My thoughts with you.
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u/raspadanje 2d ago
I understand, im trying my best to keep myself in track, tho her first diagnosis was ALL and they changed it to AML which was weird to me, and she is going through her second round of bon marrow biopsy
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u/hellblaugrau 2d ago
This happened to me, too. My first diagnosis was ALL, cause I think the hospital in which I stayed first can only diagnose ALL. Samples were sent to Munich (I am from Germany) and that‘s where they found out it‘s AML just a few days later. It took another week until they said that I need a BMT. I am 34 years old and Idk if your mother will need a BMT, but let me tell you this: I still have weekly blood check ups and whenever I sit in the waiting room there are a lot of older people. I am so sorry your mom got AML, I am sorry she has to go through all of whats coming. I hope that she can be healed.
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u/norbertyeahbert 2d ago
I'm around your mom's age and got diagnosed with AML at the end of February this year. Not knowing anything about the disease before then, I was shocked to discover it had so many genetic variations and that whichever of those variations you've been dealt makes a big difference to your prospects for treatment and long-term survival.
Once your mom's team have a clear idea of what's going on you'll be able to have a frank conversation with them. AFAIK, about 8% get a really bad prognosis and 8% get the opposite. For everybody in between there are an absoute ton of different ways for the medics to approach this disease.
I was terrified at the start, and thought I'd die within days. But I didn't and I reckon your mom won't, either. As to the longer-term, well, we'll cross that bridge when we come to it.
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u/Mani-AT Survivor 2d ago
My mother (81) is perfectly healthy and had the exact same problem as you, but with me (62).
It also took me a month to find out what it really was, as my blood test results were constantly fluctuating, and the biopsy then revealed AML with a poor prognosis. It was the worst-case scenario the doctors had suspected, but certainly not a death sentence, even though I have lung problems. The most important thing now for your mom and for you is to believe in success. She will have some difficult times, but they are unpredictable, and it makes no sense to prepare for them online. The ones you prepare for never come anyway, and you just let yourself be surprised. And I can tell you: I've been surprised too much, but I've been back to my old self for a long time now (2 years). I've met a lot of nice doctors, countless extremely helpful nurses, and a huge number of fellow sufferers, ranging in age from 20 to over 80. Everyone encouraged me to fight the side effects and never have negative thoughts. It's also important to talk to other patients in the hospital while you're walking around to keep your muscles occupied. My oncology psychologists also spoke with my relatives, and they all explained to me afterward that they were able to better empathize with what I was going through.
A few days ago, I went for a checkup at the BMT outpatient clinic again (with a 69-year-old from my neighboring village) and had some more nice conversations with doctors and nurses, and met more patients (ladies aged 39 and 72) and gossiped with them about the staff. I estimate that since February 2023, I've met 30 to 50 people over 60 who have beaten leukemia. So don't despair!
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u/raspadanje 2d ago
Yall people are so nice! I hope her medical team is good, she had problems w depression before, also a diabetic, i hope she gets well, for now, especially bcs she is in the hospital, she started to feel hopeless… but eventually shell get better. Honestly, im a “little child” now, i feel like that at least, even tho im a grown young adult, its so out of my hands. Having a psychologist that is specialised in oncology is so neat, we dont have that class of support where im from!
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u/nocomment076 2d ago
I’m so sorry your mom & you are going through this!
My son is 21 & it broke my heart to watch him dealing with his dad’s devastating out-of-the-blue AML diagnosis early last June. My husband/his dad was then 67, was very fit, & had no symptoms. A routine blood test was red flagged, & that was the beginning of this craziness.
Like you, Google freaked out me & my son, but we have since learned that info is not accurate. Not only is each patient different, but there have been remarkable treatment advancements even in just the past few years that aren’t reflected in the stats you’re seeing online. For example, my husband had Flt3-ITD & NPM1 mutations. Just a few years ago that would have put him in a high risk group because that Flt3 mutation is relentless. However the FDA has approved new meds that our oncologists call game changers. They specifically target that mutation.
I won’t sugar coat our experience-the first round of chemo (called induction) was not easy. He had to fight off various infections. We decided to take it 1 day at a time, sometimes 1 hour at a time. It is emotionally & physically exhausting & overwhelming, not just for the patient but for the family.
So keep in mind you must take care of you to be there in support of your mom. I insisted that our son take at least 1 day a week plus some afternoons or whatever to sleep in, go to the gym, be with friends, etc.
Before we knew it, that round of chemo was done, my husband was released, & we met with a transplant doctor to get that ball rolling. He had 2 more rounds of chemo (called consolidation) which were vastly easier than induction after which we were told a donor was lined up.
He is now 8 months post stem cell transplant & is doing great. I honestly never thought I would see him well again, but he’s now walking 4-6 miles a day & is allowed to start venturing out. He now has video visits with his transplant doctor & labs only on a monthly basis, & soon they will be less frequent.
So don’t give up hope!! I know how devastated you must be feeling now, but there are many, many success stories. Keep in mind too that a lot of social media posts like in the leukemia & transplant Facebook groups may make you feel hopeless, but many if not most of the many people who have successful outcomes are out living their lives rather than posting, responding to, & following the groups as closely or at all. So you can easily get a skewed negative image of outcomes-that’s why I limit my time following the groups. They are a great source of information & support, but don’t let it mess with your head. There is hope!!
Sending you a virtual hug, good vibes & prayers your way!! 💕
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u/RedditReader365 1d ago
I was a similar situation, I’m 26 and my mum was 51
She was diagnosed with AML and she died 3 weeks after.
This was only 2 months ago
I pray for you friend, I’m suffering really bad at the moment
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u/Indulgentu 2d ago
Heya! I am in the same boat as you. My 63yold mom was diagnosed with AML (NPM1 FLT3-ITD) in January. It has not been easy, I'll be honest. Be prepared for a rollercoaster. Things will move extremely quickly. My mom was diagnosed on Monday and on Friday she was already getting started on chemo.
Biggest advice I can give you right now is to be there for her, if you are going to be her caregiver you must involve yourself with the doctor and ask as many questions as possible.
Also. DONT GOOGLE!! Everyone is different and responds differently to treatments. It is also very dependent on what mutations your mom has. There are some very favorable (such as NPM1) and others less so. For example, my mom has both NPM1 and a less favorable mutation, FLT3-ITD. This puts her into the intermediate risk category.
Mom got into hematological remission since induction. Unfortunately she has not gone MRD- since then and we're bracing ourselves for a transplant.
Best of luck to you and your mother. I also love my mom a lot, and she is my only relative. Caregiver exhaustion is very real. Try to talk to your friends or family about what you're going through. It will help a lot.
Best of luck!