Anyone had successful stem cell transplant for AML?

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?

Stem cell transplant on June 9, released from hospital July 1. Back at home now but she’s not great but may be part of recovery process. Never done this before.

Thanks for asking! 🙂
Lost her hair right before she got out.

As for son, he seems to have breezed through it all. Nurse said he did good with what he donated.

Brad, the first couple of months are not a walk on the beach by any means. I’m sure your wife is dealing with some nausea, maybe some mouth sores, unpredictable body functions, still not hungry, food doesn’t taste like anything... Please let her know and be assured yourself, that this is all part of the process. It does get better over the next few months. Make sure she stays in touch with her team to report any changes or just discuss any concerns. They are your best advocates! Also, daily temperature checks are crucial. Please don’t hesitate to reach out to this forum as well or private message me is fine too.
As for hair loss, that was from the chemo to prepare for the transplant. It will take a while, but that will come back too! This is an amazing journey she’s on. Certainly not easy but it is worth it!! A year ago I was in the same place time-wise with my transplant. It’s just incredible how resilient and strong the human body is. I feel great, as though nothing has ever happened. But I can assure you at the time, I could not have imagined that. I hope this gives you and your wife some hope. There IS a future. All the best! Stay strong, stay postive... you’ve got this!!

Unfortunately that’s a pretty common side effect to the chemo. Good news is that it grows back. Lots of cute hats, scarves in the meantime if her head gets cold. If you need suggestions I have great resources for those.

Thank you! The "unpredictable body functions" rings very true. Lately, she's gone from constipation to diarrhea and back. I bought lower strength Colace (50 mg) so maybe things will smooth out. No nausea although she's got three meds for that so looks like it's expected. I assumed the problem with her gut was why she was not eating much but you're saying it's just par for the course. I think it's important for her to eat so I've been buying her favorite gelato for months just to get calories in her. At least she didn't lose weight in the hospital like they were worried about. We know it's a marathon, not a sprint, but it's still hard at the moment.

Due to the virus, I can't go in to her appointments like I've done for the past 14 years and I've alway been the vocal advocate who gets the feedback we need. Not any longer and she's struggling with her memory I'm assuming just from the stress. Anyway, yes that was awesome feedback and I really appreciate it! Today I've been sitting in my vehicle for 5 1/2 hours in what is now over 90 degree heat while she gets transfusions inside. We didn't know and I guess you never do know what's going to happen until the blood work comes back. At least I brought my laptop and can get wifi here in the parking lot.

Brad, that’s really unfortunate you can’t be with your wife for her treatments and appointments right now, for clarity and for her moral support! Her memory issues might have to do with a little chemo-fog...it’s a real thing, along with her stress. Does she have a patient portal for information from her transplant team? If so, all her notes should be available through that source. If you personally have questions, you can contact her team directly, or, send a note sheet along with her to appointments so your concerns can be addressed. They would make it a point to contact and update you, as you are your wife’s care giver, with pertinent information. You should’t be feeling so in the dark. You are a vital member of your wife’s survival team!

Gut problems are quite normal through the first couple months. The anti nausea meds, while a godsend, also play a big role in the disruption of normal bowel activities and health. The sooner she can get off those, the better. Have you ok’d the Colace with your wife’s doctor or pharmacist on her BMT-team? There are products which can interfere with the meds she’s on. One thing that helped me immeasurably and was approved by my team was eating yogurt mixed with 1 or 2 teaspoons of ground flax mixed into it daily. It helped restore the normal flora destroyed by the chemo and all the antibiotics. Also to drink at least 48 to 60 oz of water daily to keep the body properly hydrated and to flush the toxins. Getting calories into your wife is also important especially if she’s not been eating much. I lost 30 pounds last year, so i know! Fortunately i had gained back 10 in time for the transplant...and ended up losing that and more. Not a weight loss plan I’d recommend. LOL.
I really can’t stress the interaction of the BMT-team enough. They are the first source to ask if you have any concerns! They run the show right now and need to know every little detail big or small! But don’t hesitate to keep reaching out here. We’ve got your back. Wish your wife well! And good luck to you...hope you don’t have any more 5.5 hour waits in the car on such a hot day!! All the best!

Hi @tedwueste, and welcome to the Mayo Clinic Transplant group. I am happy that you have joined because this is the place where you can meet and interact with others who have questions and experiences to share about stem cell transplants.
I want to commend you on your desire to share and support others. To get started, would you tell us a little about yourself and the process that leads up a stem cell transplant?