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My wife has had a trial treatment at MD Anderson and did pretty well. Now she's scheduled for stem cell transplant which we know has risks. Just curious if anyone else here has been down that road.
@bradmm, I'm tagging a few members who have had a stem cell transplant for a blood cancer or who are the caregiver of someone who has undergone stem cell transplantation, like @larsmayo @ruttgerbay @rajendrakumarojha @jeaniecm @ckeys @kjjjrader @nick0820 and @grandpabob. Not all were for acute myeloid leukemia (AML), but relevant experiences none-the-less.
What was the trial treatment that your wife had?
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We were told that the normal chemo for AML would do her no good so Pevonedistat, a drug not FDA approved so not available elsewhere, was added and the Study Chair has commented that she has responded well. She's the first with her specific disease to get this combination but it's been effective.
I wish my wife coul have had a stem cell transplant, and we were all ready to go, but a pet scan a couple of days before it was scheduled showed she had too heavy a burden of lymphoma for a possible successful outcome. As a result, she had a CAR-T infusion. She has withstood the physical side effects quite well, but is having a battle with neurotoxicity — she's been in a near coma state for three days, but we are assured she will come out of it. As we understood, there is nothing like that with a stem cell transplant. The hardest part … For me, anyway, is the forced separation…can't talk to her or hold her hand …at a time we both need it..even tho she might not know I'm there. Hopefully we'll have time for that soon.
My husband had a autologous stem cell transplant for multiple myeloma in 2018. Right now we are looking at a possible allogeneic transplant for MDS. The auto transplant from what we were told was nothing compared to what an allo transplant would be. The auto transplant did not have the GVHD issues. The main issue he had was he got septic shock 7 weeks after the transplant. That really took away the energy and strength he had maintained after transplant. It took along time for him to recover from that.
The type of MDS he has the odds of successful allo transplant are very low. So we really are unsure if that is the course of treatment we want. He is on a clinical trial and responding very well to that treatment. Sorry we don't have more information to share.
Thank you both for your responses! This is all very scary stuff! My wife was diagnosed with CLL in 2006, chemo and then remission 2010. MDS diagnosed in 2013 and treatment (injections) every three weeks until last year when they became weekly. Then transfusions were needed which caused us to get another bone marrow biopsy since she hadn't had one since 2013 and that's how the AML was diagnosed. The stress of all of this would be hard enough but now we have to worry about COVID-19 on top of it all.
How was the stem cell transplant was it by injecting it into the organ or intravenously. Please if you can tell it would be of great help.
Brad, tomorrow is my 300 day anniversary of my allogenic stem cell transplant for AML FLT3 mutation…almost at my 1 year mark. So far so good! Since the transplant, each of my subsequent bone marrow biopsies have been negative for any sign of leukemic cells! My new immune system is up and running. We are all optimistic that it’s going to be a success, though usually it’s at least 2 years post transplant before it’s considered successful long term,.
I do have a few GVHD issues but it is important for we transplant patients to experience some issues. You want that little battle going on inside where the new system doesn’t recognize leukemic cells and eradicate them.
The transplant and recovery, while certainly no ‘walk in the park’ was worth the effort. The first 100 days are crucial for recovery. Your wife has been through so much already and I empathize with your struggle for the right decision. I had no choice, it was either a transplant or ‘get my affairs in order’…as the several rounds of chemo to treat the AML were successful, but my leukemia was aggressive with a high risk for relapse. My husband and I knew it was my only hope for a future. I have no regrets at all for having had the transplant!!! This has been an amazing journey and though there are things in my life which have changed, I am surviving and thriving!
MD Anderson is one of the premier BMT hospitals. If your wife’s doctors feel comfortable with going forward, then you’ll need to have a heart to heart with your wife, have a good consultation with the BMT team at that hospital and then decide. I know exactly what you’re going through…it’s not a decision to be taken lightly. Best wishes to both of you!
Had transplant on Tuesday and today is Friday. No obvious signs of any problems, just now starting to have some fever.
On another topic, I tried to login and the website wouldn't let me. I finally tried to register again and, when I entered my email and login name, it recognized me. Is there a time limit that you need to visit the site again by?
@bradmm, great news that your wife is tolerating the stem cell transplant well so far. Is she in isolation? Have you been able to visit her?
Regarding login. There is no time limit between logins to Mayo Clinic Connect. I'm not sure why it wouldn't let you login on your first attempt. Please send me an email to describe the issue using this form https://connect.mayoclinic.org/contact-a-community-moderator/ I'll help get to the bottom of the issue. Thanks.
Colleen, yes, I visit her everyday! They wanted to get her weight up before admission and I was buying her favorite gelato for her before she went in and she gained 11 lbs in a week. Since they won't allow things in the frig more than 24 hours at the hospital, I've been buying her pints of the gelato and taking it every day so she can still get lots of calories. She's still gaining weight! As of yesterday, she's gained 16 lbs since we started this. It is curious us that I can visit her. When we was in MD Anderson for AML chemo, she was put in 28 "Protective Environment" with no toilet and no shower and I had to talk to her through a glass panel. She did so well she got out in 21 days but we don't know why this is different, her immune system was still wiped out for the transplant.
A couple of side notes:
We don't live in Houston but we spent a couple of months there earlier this year when my wife was getting treated for AML. When we learned that she then needed a stem cell transplant, we also learned that we'd be in Houston for at least 4 more months for that. I was extremely lucky to have found an AirBNB 1 mile from MD Anderson with a small back yard for our two small dogs (children). She needed to be there because the trial drug she was receiving was not available anywhere else in Texas to my knowledge and the standard chemo would not have done her much good due to a mutation in a gene. It worked great but there was no reason to stay in Houston for the transplant so I started working on getting her moved closer to home and found the Texas Transplant Institute in San Antonio. I can be annoyingly persistent but I got her orders moved to SA and got her records transferred in a pretty short amount of time. This was also beneficial because her donor, our son, also lives closer to SA than Houston. So, while she is recovering out of the hospital, SHE CAN BE AT HOME! I've tried to get the medical folks to also pay attention to her psychological/emotional health as well as her physical health. The downside for me is that instead of being one mile away, I'm an hour away via I-35 but it was all very much worth it and will be more so when she gets out!
The other side note is that our son, her donor, did his residency at the Mayo in Jacksonville, FLA, which ended a couple of years ago! Since this is the Mayo Clinic Connect, I feel a little more connected. 🙂
@bradmm, a quick check in to see how things are going for your wife, your son and you?
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