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75 year old father just diagnosed with AML
My father 75 year old father, Greg, was diagnosed with AML yesterday at the VA Hospital in Madison. The results for his genetic testing are not yet in, but the doctor advised us the best case scenario is 18 months with chemotherapy and only 2 months otherwise. My father has been very healthy his entire life; however, this past winter he started feeling extremely tired, began having pain in his joints, and looked extremely pale. He had his first blood infusion on Thursday and is going to start chemotherapy on May 13th. Most, if not all, of the research I am reading says my dad is not a candidate for a stem cell transplant, which seems to give patients the best opportunity to beat this horrible disease. I am heartbroken and lost and any suggestions or experiences anyone is willing to share to help me better help my dad would be much appreciated. Thanks Ryan.
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Congratulations Lori on your 6th anniversary. We all appreciate you so much. Love, Eileen
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1 ReactionAw, thank you so much, Eileen. Never in a million years would I have imagined that having cancer could have turned into such a positive time in my life. Over the past 6 years I’ve had the honor and pleasure of meeting so many outstanding people, including my doctors/nurses, hospital staff. I’ve made new friends, and had experiences of crash courses in biology and blood cancers, BMT and the aftermath…phew. A completely unexpected life direction from having developed AML!
I think, besides having a 2nd chance at life, one of the biggest rewards I’ve enjoyed is being such an integral part of the Connect Community. I stumbled into the forum early in my recovery and found this amazingly supportive group! I never dreamed that what I went through, endured and recovered from would go on to be someone else’s survival guide. But that’s what we do here! We help others along their journeys so they don’t feel alone…we offer hope.
So, in turn, I also thank and appreciate you for your contributions to Connect. You’re a positive voice in the blood cancer group for so many with ET. ☺️
Happy belated 6th “Cell”ebration Lori. You’re my inspiration!
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2 ReactionsHi @sonieaml, Thanks! Back when I had my BMT, there weren’t other options available. Since then there have been new drugs released such as Venetoclax (2022) used along with Azacitidine and decitabine, which has been a life saver to many older adults where aggressive treatments aren’t well tolerated. Also released are drugs targeting several of the mutations like FLT3 and IDH2, and hopefully soon, as you mentioned, NPM1.
My early AML treatments with cytarabine and idarubicin were followed monthly by a Midostaurin chaser. That targeted the FLT3 before transplant. Now there’s gilteritinib for FLT3 in refactory AML. It’s really good news for relapsing/refractory AML patients! Of course, the best news would be something that prevents all of this in the first place. Le sigh. ☺️
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1 ReactionHi @drawlings0803. Aw, thanks. It was difficult at the time, 6 years ago, to think I’d ever be anyone’s inspiration. Though I did motivate people in my chemo unit to get dressed daily and walk with me! LOL. Does that count? I can be quite persuasive or annoying…depends on how you look at it 😂.
With the BMT, after meeting 2 BMT recipients, about a month and a half after my transplant, I found out how valuable it is to be able to talk with someone who has personally gone through the process and recovery! Those two people gave me the ‘shot of hope’ that I needed to keep pushing through! We only have control over two things…our attitude and our effort. It’s up to us to face things head on and make it happen!
You already have such a terrific attitude and the spirit of endurance to make this all possible. While it’s not an easy journey, it is well worth the effort so I know you’ll do well. And I’m here for you, along with my BMT posse, as I like to call my fellow BMT peeps, to talk things through, give you encouragement and keep you focused on the future! Hugs.
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1 ReactionYes! That counts!
I needed to hear your words of encouragement today! I have days when I feel brave & days when I feel scared. I know the transplant is the way to go.
I hope I can be the person you were to my fellow patients when I have this done. I think it’s important to get dressed & move! (I’d even put my makeup on but it’s probably not allowed!).
Tomorrow I have the second consult with the transplant team. I guess it’s just more talking. Not sure if I told you but they worked up one donor with a 10 out of 10. They are still working on the other one.
Also tomorrow they’ll schedule the cardiac & pulmonary testing. After that, I’m not sure. My hematologist said once the process gets underway, it ‘moves quickly.’ Meanwhile I’m just taking it one day at a time.
Diane
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1 ReactionPraying for you Diane!
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1 ReactionHi Diane! Ohhh that’s great news about a donor! 10/10 is awesome. It’s nice to have a 2nd on standby just in case. But hopeful #1 is a go!
Honestly, you wouldn’t be human if you didn’t go into this with some reservations…at least a healthy respect for what is going to be happening…the potential for a 2nd chance at life. As we say in our family, “It’s a big dill!” 😁 The process isn’t a walk on the beach, but if all goes well (and it will) you’ll have years of walking on the beach!
You’re already jumping in feet first! There will be cardiac and pulmonary tests, along with a number of other tests necessary to make sure you’re up to the transplant. Most likely you’ll have educational classes for infection control, diet, etc.
Actually, here’s a really comprehensive guide from Mayo. It may not be exactly the protocol for your clinic but most follow the basics set forth here. There are several subheadings so make sure you explore all of them. It should open up into Caregiver though where you’ll get information on the transplant itself.
Scroll down to Allogenic Stem Cell transplant.
~Mayo Clinic Caregiver guide for BMT.
https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/
This does go very quickly once you get the ball rolling. The actual ‘transplant’ takes about 20 minutes and it’s just like having a blood transfusion as the cells are infused through an IV line. Very anticlimactic compared to all the hype leading up to it! ☺️
Once the cells are infused, they circulate through the blood, rolling along the veins until they find the specialized pores that allow the cells to flow into the bone marrow. It’s quite amazing, really. It will take about 10 to 20 days for them to engraft in the marrow. Once that happens, the stem cells start setting up housekeeping and develop into the various blood cells…red, white and platelets. After that, you’ll start feeling better daily as your body begins to recover.
Try not to get mired down in the comments about GVHD. I been involved with a panel of hematologists the past couple of weeks who are in the process of updating educational material (not at all intimidating 👀) Anyway, a piece of information I gleaned is that the incidences of serious graft vs host have been greatly reduced with the newer protocols that have been developed over the years since I had my transplant. That’s awesome news!
So, phew…that was maybe more info than you wanted to see tonight. I’ll be eager to hear what you learn tomorrow! I’m here if you need a sounding board. Hugs!
Thank you!