1. < Blood Cancers & Disorders

Anyone had successful stem cell transplant for AML?

Posted by bradmm @bradmm, Apr 12, 2020

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.

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Mentor
Lori, Volunteer Mentor | @loribmt | Oct 20, 2020
In reply to @bradmm "Trust me, I'm not hearing voices or anything but I felt her presence last night as..." + (show)
@bradmm

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!

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Hi Brad, just a note to let you know you’re in my thoughts these days along with many on this site who have followed the story of you and your lovely Yvonne. After so many years of caring for each other this has to be a very emotional and difficult period of adjustment for you and your family. Never stop talking to her. That will keep Yvonne nearby as you work your way through each day. Wishing you peace...

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waveg | @waveg | Oct 23, 2020
In reply to @loribmt "Good morning, Gretchen. By my reckoning, if your SCT is Wednesday, today is your last day..." + (show)
@loribmt

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.

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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

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Mentor
Lori, Volunteer Mentor | @loribmt | Oct 25, 2020
In reply to @waveg "Hi Lori! Thank you for your insight and best wishes. Yes, Wednesday was my fresh stem..." + (show)
@waveg

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

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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.

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1 reply
amtrakian. Don Castle, MPA | @amtrakian | Oct 25, 2020

We wish you a speedy recovery and great health as you recover from the procedure.
..don castle

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waveg | @waveg | Nov 12, 2020
In reply to @loribmt "Hi Gretchen! I’m so happy for you that the transplant went well. Hah, yes, I remember..." + (show)
@loribmt

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.

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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

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Mentor
Lori, Volunteer Mentor | @loribmt | Nov 12, 2020
In reply to @waveg "Hi Lori! I’m sorry for the late update. Truly everything went very well and the staff..." + (show)
@waveg

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

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Hi Gretchen!! Fantastic news! What a relief. I’ve been thinking about you the past couple weeks and wondering how you’re fairing. You’re right on track now with the low energy and hair loss. That’s all reversible and just takes time. Don’t rush the progress.
You may not have setbacks. Just make sure you report anything unusual. I know you’re asked those questions each time you’re in for those critical check up appts. We joked about my team wanting to know if I had a new hangnail. Even the most trivial thing could be important.
Do you have a sedative for the biopsy? I’ve had 10 now. Three without and seven with anesthesia. That’s the only way to go! LOL. Wake up 15 minutes later to crackers and juice! ☺️ Then there’s no dread for getting the procedure. It’s a very important test. You’ll find out the percentage of your DNA to your donor. Ideally it should be 100 % donor and 0% yours. Wishing you continued success and a speedy recovery!! This is all very encouraging! Air hug!! Lori.

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Mentor
Lori, Volunteer Mentor | @loribmt | Dec 28, 2020
In reply to @waveg "Hi Lori! I’m sorry for the late update. Truly everything went very well and the staff..." + (show)
@waveg

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

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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.

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1 reply
waveg | @waveg | Dec 28, 2020
In reply to @loribmt "Hi Gretchen! Happy Holidays to you and your family. Just checking in to see how you’re..." + (show)
@loribmt

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.

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Lori, you are the best! All has been going very well and I feel great. The only way anyone would know I’ve had a “health issue” is my bald head! I had my post transplant bone marrow biopsy and it came great as did my Cd33. My CD 3 came back at only 40%. I’m waiting for the chimeric lab to come back soon and I’m very much hoping it’s has gone up significantly. Otherwise I might need some more cells.
Thank you for all your support through this. I wish you a wonderful 2021! Gretchen

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Mentor
Lori, Volunteer Mentor | @loribmt | Jan 29, 2021

@waveg ~ Hi Gretchen! A new year with a new immune system! Are the two of you playing well together? I know the new system can be a little obstinate and headstrong sometimes! Rereading your comments from last month, you were still waiting on the chimera results from your BMBX. Hopefully it showed 100% donor/0%recipient DNA or near there. Did you require a supplement infusion? There’s always some “tweaking of the controls” as my transplant doctor loves to say. This past Monday (Day 577-yay!) was my day at the clinic for 19th mo post transplant follow ups, another BMBX and the second round of 9 childhood/adult vaccines, plus Shingrix. I must say, adulting is so haaaard! (In my best whiney voice). Wishing you continued success on your transplant journey. As always, if there are ever any concerns, questions or joyous moments you’d like to share, please pop in! All the best, Lori

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Mentor
Lori, Volunteer Mentor | @loribmt | Feb 11, 2021
In reply to @edb1123 "Hi, Lori and Gretchen: I read your recent exchanges and thought I would chime in. I..." + (show)
@edb1123

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

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@edb1123 Hi Elaine, it’s been a while since we’ve connected. The last posting you were at day +86 and progressing quite well. We transplant ‘babies’ all breathe a little sigh of relief when we reach that mystical, magical Day 100. Now, you must be about 6+ months post BMT. How are you feeling? Any post transplant issues or concerns with eating, energy, GvH? Feel free to share with us how you’re doing. Mayo Connect is a great forum to help others going through our common experiences. Wishing you all the best, Lori.

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