Anyone had successful stem cell transplant for AML?

Wow! With all that you are going through physically I admire your positive attitude and courage. Bravo my friend. Keep on keeping on.!

@tedwueste You brightened my day with your fighting spirit.

I have looked periodically and looked again now and still don't see any PM's from you. Maybe I'm not doing something right.
As far as mindfulness, I bought her a book when she was in the hospital and have tried to get her to try to meditate for many years... no luck. I don't know but she's an accountant so maybe her brain can't work that way. 🙂

Ted, you have certainly been though hell so we know where you're going at the end of life! 🙂 Actually, it appears that there's no way that stem cell transplant patients can AVOID HELL! Just from what I've observed, read and been told, this is unavoidably grueling!
BTW, our son did his residency at the Mayo in Jacksonville, FLA. The Mayo is certainly a great asset to have nearby!

I went back and looked and I don't think I've said all this here but there is an eventual point so be patient. 🙂 My wife was first diagnosed with CLL in 2006 and got chemo in 2009/2010 resulting in remission. She was diagnosed with MDS in 2013 and treatment as manageable for about 6 years with injections about every three weeks. In 2019, her blood work got to the point where I was taking her in weekly for injections and sometimes transfusions. She hadn't had a bone marrow biopsy since 2013 so we went to MD Anderson (Houston) for a biopsy (because we knew from experience that they are very good at it) and we wanted to see if there was something to address the MDS vs just continued treatment with no improvement. That's when we got the AML diagnosis and we spent the next two months there while she was getting chemo and otherwise being treated. I was able to move her closer to home for the transplant.
MY QUESTION IS, I've been a caregiver for 14 years with increasingly more difficulty of hoping to make any difference aside from just taking care of logistics. For those of you who have had the transplant, what did you want most from your caregiver(s)? I'm sitting out in the parking lot now for 6-7 hours in 100+ degree weather while she's inside being treated and doing all the other stuff to keep things held together but, in the end, I don't seem to be able to help her cope.

Brad, gosh I’m so sorry she’s having such a difficult time coping. It’s customary for a transplant team to have spiritual and mental health advisor. Someone who will help mentor her and provide some coping skills, counseling and help provide her with some mindfulness exercises. Does she have a patient portal for her BMT-team at her transplant center. Seriously, I would be in contact with them to help YOU and your wife. They can also give YOU ideas on how to cope.
Also, I’m not sure where her cells came from, meaning the cell procurement center but Be The Match foundation has excellent counselors. Just go to their website..google Be The Match and you can access all kinds of information.
Your wife has been through a great deal. Just going through the treatment from AML is challenging enough. Her body now is trying to heal from the intense chemo pre-transplant and all the new medications being pumped into her system to help her through this next phase. It is mentally and physically challenging.
There is the grieving process which takes place...for her old, predictable life. She’s is overwhelmed right now that she can’t see a future. I promise you and her, there is a future! It’s well worth the effort of fighting this challenge.
I see in another post you said BMT patients go through hell. Well, that is an interesting observation. As I said it is quite a challenge and not for the feint of heart. Perhaps that’s why anyone with a BMT is so euphoric, appreciates every moment and feels stronger and more confident when we have passed the difficult phase. The first month is the roughest and into the second things start to mellow out gradually.
It is one heck of a journey but we get the opportunity to live our second great life! Please don’t give up hope. As her caregiver, just remain stoic, a good listener, be patient. And please take care of yourself too. I know you feel helpless. My husband did too. He’s always been a man of science and engineering. Problems can be fixed and have predictable outcomes. BMTs don’t. However most are very successful but it takes time for our bodies to adapt to a completely different DNA! if there are issues with GVHD along the way, her transplant doctor and team will jump to the rescue.

Hi Brad, I don’t understand why you’re not receiving my private messages to you. They should be showing up in your email box. They’ll still say Mayo Patient Connect but with a private message from me. Check your spam box maybe? I replied on the 6th and also today with lengthy emails. I can post what I wrote on the open forum if needed but we should be able to do this on the private setting. I just wanted you to know that I have responded and deeply care about your situation. I want to help you and your wife get through this difficult time so that she can move on! There is hope. ☺️

I just saw what another person posted as well. It is tough to walk through all of this and grieving is an important thing. It’s okay and an expected part of this. Another element that I’ve processed a bit is PTSD - there are often unexpected thoughts and desires that can come up. I don’t want to give “advice” per second but I can share what’s helped along the way. The integration of all the things we experience and feel is vital. I have found that writing out my story has been very therapeutic as well as staying connected relationally. Often people (people I love) haven’t known what to do so I tell them what I need: will you visit me? Can we FaceTime? That takes a little extra energy but I found that rather than being upset that people weren’t doing certain things - I would let them know. Everyone responded well. People often just don’t know how to help and might stay away for fear of saying the wrong thing.

@bradmn you and your wife have been through a lot and continue to face issues. I would hope that there are some close friends or family members that could provide some relief for you to do some selfcare (sharpening the saw) mentally, physically, socially, and emotionally. As caregivers we have a tendency to overextended ourselves trying to see too all the needs of our loved one, that we forget to care for self. When she is taking treatment maybe you go indoors and take a walk, maybe find a park to go sit and practice meditation or maybe somewhere to take a nap 😴 all in all we want our caregiver to stay healthy 😊. We love all that our caregiver does for us. Try some self compassion.

loribmt, yes, I communicate frequently with the psychologist assigned to my wife and my wife has talked to her a couple of times with no noticeable benefit. I talk to her (psych) because I reach out to everyone I can on her team all the time. As I said elsewhere, I can be annoyingly persistent! 🙂 I sent the psych flowers this week because I told her she's got a very difficult job listening to nothing but bad stuff all week, every week. She says it brightened her day. Yes, they have a portal and I'm the one who set it up and only one who has used it. Not much there. I can and have emailed her MD a few times and he's good about responding as was the coordinator who we dealt with before the transplant.

Honestly, I've always been her best source of support perhaps because I know how she ticks better than anyone else. I've never seen any counselor make any positive impression on her even before BMT. She was actually doing better when she was in the hospital in some ways, it appears, because she had people constantly coming in and out and that provided a distraction. As we approached retirement in 2018, we realized that she was going to need to FIND some form of distraction because she doesn't really have a hobby and hates games (cards, board games). We previously fixed up some rental properties and she obviously can't do that now but the thing she likes to do most is paint interior walls (I got to do the rest :-)). She used to like to walk through houses under construction but that's harder now.

I was mostly just wanting to hear from other patients what worked for them, not suggestions for me. I think, in the end, there's no easy way out and you folks have confirmed for me that it's just a matter of surviving one day at a time. Things will get better in time which is what I tell my frequently but it doesn't make her feel any better today.

As for the donor, it was our son. Thanks for your response!