Anyone had successful stem cell transplant for AML?

Trust me, I'm not hearing voices or anything but I felt her presence last night as I was going to bed and I knew she would never want to be the source of my sorrow or pain so I knew, in order to honor her and her love, I will move forward with her in my heart and live my life. I have been talking to her out loud telling her that I love her as I did frequently this year when no other words would matter while she was going through what she went through. Somehow, it is comforting to me to just talk to her. I have been email with the widow of one of her cousins (she had a close knit, fairly large family all in the same town) and she told me she still does that 30 years after losing her husband! Speaking of family, her father was one of 6 brothers who all went off to WWII and all came home to this small (at that time) Texas town! I never got to meet Yvonne's father but I have felt a bond with him anyway and know I would have like to have talked with him... we both love gardening. I will miss being with Yvonne in the physical world but she will always be with me in spirit!

Good morning, Gretchen. By my reckoning, if your SCT is Wednesday, today is your last day of conditioning? Tomorrow is a day of rest and fluids with Wednesday being the big day, unless your protocol is different. Are your cells fresh or frozen? Mine were fresh, but by the time they arrived at 8PM at the airport and went through processing at the lab, I didn’t receive them until 11:15 that evening. By then my husband and daughter had drifted back to the hotel and my new B-day was celebrated with my two transplant nurses. LOL. I slept through the 15 minute infusion. Woke up with one of the nurses gently rubbing my arm to tell me Happy Birthday and give me a ‘birth certificate’.
I’m happy you’re still doing well with the chemo. My initial experience was that of a person falling from a 20 story building, reaching the 10 level and saying, “so far, so good”. LOL
What was your treatment for MDS? I’m not familiar with with it so not sure if you went through chemo treatments for that. If so, your down days will be as they were mid cycle after chemo when in the neutropenic stage with extreme weakness and tiredness. Maybe a bit more intense as the conditioning for the SCT is aggressive to clear your bone marrow of any disease or cancer and the chemo also suppresses the immune system to allow for engraftment of the new stem cells.
So don’t be harsh on yourself when you feel weak or tired. This is not something you can rush through physically. There’s so much going on as your body recovers from the conditioning and hosting an entirely new immune system. All of that saps your energy as your body remodels from the trauma. Honestly, there were a couple of days when I lived 5 minutes at a time. I certainly remember days in the first month feeling so tired but needing to shower. By the time I had applied the Aqua barrier on my Hickman I was too exhausted to actually get under the water! I was lucky just to run a washcloth over my face! But here I am, a little more than a year later and I’m very much back to my former life before AML and transplant. I walked 8 miles yesterday!
Just for fun I pictured my new cells as little minions running around, giggling as they found a new home in my bones! I just needed to lie still and let them do their job. ☺️ (Later on, with some GVHD issues, there are days I’ve imagined them as a gang of thugs just looking for trouble! LOL). Wishing you the very best through all of this! Your positive attitude will take you far. Lori.

Hi Lori! Thank you for your insight and best wishes. Yes, Wednesday was my fresh stem cell transplant and all went very well. I also slept quite past it all due to the IV Benadryl. This Saturday and Sunday more chemo according to the protocol and then I guess I could be in for some rough days. I’m taking things one day at a time, and, as of now, I’ve been doing great. Hydrating and walking around the unit a lot. I’m sure at some point my minions trying to take up residence and the residual chemo will dance or storm.

I was treated with Revlimid and Vidaza for the MDS till the transfusions became too regular. The staff here has been wonderful. They too remind me to enjoy the good days and rest on the bad. I will keep you updated after the next chemo.
Gretchen

Hi Gretchen! I’m so happy for you that the transplant went well. Hah, yes, I remember the Benadryl and sleeping through the excitement of the birthday “Cell-abration” as we put it. Will be thinking of you the next few days as you enter the recovery stage. You have a great staff of experienced caregivers and professionals around you making sure you’re as comfortable as possible. Hopefully any side effects will be minimal and the little minions play nicely as they engraft. Just remember, this phase will pass quickly and any miserable days will be only memories soon enough. There’s no reward for trying to ‘tough it out’ without meds if you need them! 😉. Stay strong, stay positive...you’ve got this!! Air hug! Lori.

Hi Lori! I’m sorry for the late update. Truly everything went very well and the staff was outstanding. Besides a few very tired and sleepy days, I had no other issues and was discharged from Mayo on day +13. It has been so nice to sleep in my own bed uninterrupted. My numbers continue to go up and I hope they continue to do so. My energy isn’t at all what it was before I hospitalized. I do a little and rest a little. I’ve lost almost all my hair and hope it will start growing back quickly. I’m at day 22 now and continue to go in 3 times a week with another bone marrow biopsy next week. Ugh. I know there can still be set back backs but I’m hoping they will not happen. Thank you for your support and insight through this! Gretchen

Hi Lori! I’m sorry for the late update. Truly everything went very well and the staff was outstanding. Besides a few very tired and sleepy days, I had no other issues and was discharged from Mayo on day +13. It has been so nice to sleep in my own bed uninterrupted. My numbers continue to go up and I hope they continue to do so. My energy isn’t at all what it was before I hospitalized. I do a little and rest a little. I’ve lost almost all my hair and hope it will start growing back quickly. I’m at day 22 now and continue to go in 3 times a week with another bone marrow biopsy next week. Ugh. I know there can still be set back backs but I’m hoping they will not happen. Thank you for your support and insight through this! Gretchen

Hi Gretchen! Happy Holidays to you and your family. Just checking in to see how you’re doing post transplant. Hope all is going well and you’re getting stronger daily! Wishing you all the best in the new year ahead. Lori.

Hi, Lori and Gretchen: I read your recent exchanges and thought I would chime in. I am at Day +86 from my BMT for AML. I was at the Mayo Clinic in Rochester, MN and lived there until Day +78 when they let me move home. My side effects from the conditioning chemo were some nausea/vomiting occasionally (not to often) and diarrhea. Both have continued but aren’t as bad. I also had a fever of 101 and a rash post-transplant, so they put me back in the hospital for about 10 days to get things under control. However, I have had very minor side effects since then so I didn’t have to stay near the Mayo for the full 100 days post-transplant. Now I am feeling good, don’t have much fatigue, and am able to walk 2 miles without getting too tired.

My question to Lori - how long has it been since your transplant? I am curious to hear your post-transplant story, as I am wondering what may lie ahead for me! I know everyone’s experience is unique, but I am still interested. Thank you!
Elaine