Connect
← Return to Anyone had successful stem cell transplant for AML?
Discussion
Anyone had successful stem cell transplant for AML?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Sep 2, 2022 | Replies (163)Comment receiving replies
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.
Replies to "I went back and looked and I don't think I've said all this here but there..."
@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.
Connect
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.