Husband with AML facing a stem cell transplant

Good morning @loribmt and @katgob
As usual, your encouragement lifts me up. Thank you for that!
Hope you enjoyed a great weekend.
Yes, today is another day to be grateful for!

My husband continues to do well, moving around, eating as much as he can - he requested some rotisserie chicken over the weekend and I naturally delivered - and he is trying to drink enough water too. He reported last night he is starting to develop some sores in his mouth. Blood counts are dropping steadily as expected but haven’t bottomed out yet. Today is +5. So I expect this week will be more difficult for him than last week. I know his care team has tools to help him through this. And before we know it, it will be next week and his counts will start climbing again. 🙏 His spirits are good, and he tells me he feels calm every night as he goes to sleep. Good drugs help, but I think this experience has given him new hope for his future that is more real now than ever.

I so appreciate knowing I can come here for support, humor and encouragement. Thank you. I want to offer others the same.

I’ll check in later this week.
Have a good day!
Mary

rayj- I had a TP53 gene mutation. It is amazing to learn about new drug therapies. In the end, we get to choose what to do next. How long are therapies done, and how often are test done to verify. For me, I was told my MDS results came in at the low to mid-level. No blast or any sign of possible leukemia yet based on my bone BMB. I was given a choice to watch and wait or have a bone marrow transplant.
I had found in my genetic results that I have a Brca2 mutation and in 2022 I had breast surgery; I did not feel watch and wait was good for me. For my breast cancer, I had a tumor that was Her2+. This and the BRCA2 mutation sped up the growth of my tumor. So, I thought it over only a short bit, and told my DR. I would do it. He immediately put me on the Be a Match blood donor registry.
I knew that my watch and wait could lead to very likely to AML My best chance to not have AML was a bone marrow transplant.
If you look at all the info, they give you and from all the questions you will still ask, ask yourself, Why not now?
Your answer will come. We are here for you.

Hi guys. Went yesterday for evaluation BMT. UNC Chapel Hill NC. We discussed value of trans plant vis a vis new drugs action. Seems that although I have made huge progress, I have an errant gene activity. 5 and 9 are abnormal
Although no one is pushing for the transplant, the evidence suggests that it is one way to control it. I did some clinical volunteering with DNA and blood work late last year that turned it up. That was before the radiation treatments for the one 9mm site I had. I will probably go ahead and do transplant. I have no guarantee that it will be substantially better than 6 to 8 rounds of chemo and then maintenance, because of the effectiveness of the new drugs therapy. They said I could wait and see , but if my numbers started to go back up I could not get transplant until they reduce again. Then too, I would not be getting younger. Still have a while to formally decide. Will probably get the preliminary testing out of the way in case I have other issues that would preclude transplant

@romer321
Here is information on becoming a donor:
https://bethematch.org/support-the-cause/donate-blood-stem-cells/donation-process/
Thank you!

How wonderful Mary612. It is so wonderful for your husband to have the blessing, for you to be there, and for him to have a tasty dinner! Day 0 is a day we never forget. Your nurse Abby sharing a name with your beloved dog is a gift. What a positive post!!
I am at day 66 after transplant and today I got a good report again. Fairly consistent with all my numbers. My next BMB is at 100 days. Will my 25-year-old donor still be 100% of me? At least a week or two after my BMB I will find out. No worries. To me, it means each day is a new day.
In the hospital, I was told our hospital was having digital "update boards" installed soon. Not yet.
I love how the nurses started writing my numbers and were as enthused as me seeing my numbers go up.
Keep us posted, also about how you are doing as the day go by.

Oh Mary, this is perfect!! So many lovely and meaningful photos! You have a beautiful family! Wow!! It’s so special to actually put faces to the people behind the scenes! Thank you so much for sharing a personal glimpse into your lives! Give Dane my best wishes today! I’m pretty fond of all my fellow Chimeras and their families! ☺️
Haha I bet you didn’t see my comment to another member yesterday about being a chimera…having 2 sets of DNA. My husband prefers the Greek mythology definition for me: fire-breathing woman female monster with a lion's head, a goat's body and a serpent’s tail. 😂 That should make your husband laugh!

Hi Lori!
It really was an amazing experience and the most beautiful anniversary gift of all time. The symbolism coinciding with our union - finding each other in mid life after each of us experienced failed marriages- is also not lost on us - a wish granted, a new beginning, a prayer answered. The bittersweet joy of it all!
We sent off a brief note of gratitude to Dane’s donor this morning through our transplant coordinator, anonymous, of course. We just wanted to let him know the transplant went well, we are so grateful to him, and we keep him in our prayers always.
I was finally able to upload a shot of some festive decor I posted in the hospital room. Check it out. 😊

By the way, I read your recent note to him about how yesterday was quite literally the first day of the rest of his life. He really loves hearing your positive voice!
Thank you!

I’ll check in again soon!
Mary

Hospital Room Decor for our 19th wedding anniversary!

Mary, I’m reading the accounting of your husband’s rebirth-day with tears in my eyes! The Chaplin being there, the nurse named Abby, your wedding, the symbolism…all of it. What a special moment for all of you. And he finished up with pancakes for dinner! Love it!
He’s already a model patient and you’re the perfect caregiver. You two can move mountains together! Thank you for the update, cuz I was wondering. 😉

Hospital room decor!