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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Colleen Young, Connect Director | @colleenyoung | Oct 17, 2020

@loribmt and @edb1123, I'm glad that you were successfully able to connect by private message. I'd also like to point out the value of sharing in the open discussions. It is because of this open and honest discussion that @edb1123 @waveg and others are able to find members who have been there like @loribmt @amtrakian @mjpm2406 @tedwueste and Bradmm. I encourage you to continue to share here to the benefit of many.

amtrakian. Don Castle, MPA | @amtrakian | Oct 17, 2020

Wow. 7 miles a day post bmt!!! Never heard of that many miles. And my neighbors always comment on my scant 2 or 3 miles a day, per and post chemotherapy. Remarkable!

tedwueste | @tedwueste | Oct 17, 2020

In reply to @waveg "I should add, I’m 62 (63 very soon) and receiving BMT for MDS." + (show)

Hi Gretchen- I am now 18 months post transplant. I had both Hodgkins Lymphoma and AML (the later was probably related to my treatment for Hodgkins) - I am doing well. There has been ups and downs in my journey and I would just say ... stay present in the moment and be ready for anything. I think the docs don’t say a lot about what the process will be like because it can vary so much person to person. For me / I had lots of complications and was back in the hospital after transplant 4 times in the first 5 months. I have a close friend who fared differently - he recovered much after and he’s 10 years older than me. All in all - I’ve had a good experience And wonderful care, and am thankful to be feeling good now. It’s a journey.

Lori, Volunteer Mentor | @loribmt | Oct 17, 2020

In reply to @colleenyoung "@loribmt and @edb1123, I'm glad that you were successfully able to connect by private message. I'd..." + (show)

Hi Colleen, I agree whole heartedly about continuing to openly share. I value the input and encouragement I’ve received through this Forum as well. It’s so beneficial to pre and post transplant patients, their caregivers and family to see positive outcomes, share concerns and realize they’re not in this alone. I always seem to err on the side of caution when posting but will certainly be more forthcoming if you feel it’s beneficial. I always appreciate straight answers but never sure if I should be that direct. 😉

waveg | @waveg | Oct 17, 2020

In reply to @loribmt "Well, Gretchen, there’s a lot more to tell that I haven’t! LOL Sometimes ignorance is bliss...." + (show)

@loribmt

Well, Gretchen, there’s a lot more to tell that I haven’t! LOL Sometimes ignorance is bliss. Honestly, every one of us has a different experience. My second week after transplant was the worst with mucositis in my mouth and throat. Not everyone has this so I hesitated to write about it. Was readmitted to the clinic for a week on a fentanyl pump. Slept 5 days away and woke up one morning to feel perfectly fine and on my merry way. Engraftment happened and the white blood cells charged to the rescue. Reversing the nastiness in my mouth! That was my less than peachy week.
After that things went well outside of the persistent but expected nausea. I’m a walker, having walked 4 miles a day pushing my chemo trolly around the halls during AML and pre transplant. After transplant, walking was an effort and used a wheel chair to get from where we were staying a block away to get to the clinic.(Mayo Rochester is linked via tunnels to most hotels and businesses around the clinic. Really convenient). Transplant patients are actually outpatients which really speeds up the recovery time. Anyway, it took a couple of weeks before I could do the walk to the clinic and back sans chair. My Rocky Balboa moment was running up a long flight 2 months later after returning the wheel chair to the clinic.
Tiredness and weakness will be your companions in the following weeks. The most difficult thing I had to learn and was told to me over and over, was/is... Listen to your body!!! Never having been a idle person, it was difficult to not feel guilty lying around all day watching tv, reading, etc... but if you overdo the activity your body WILL let you know about that the next several days. LOL So REST and recover slowly. You’re getting someone else’s DNA in your body. You’re also having to recover from the conditioning, all the new meds, etc... So do remember that and give yourself time to recover. This is a big deal! But wow, when you recover and realize what you’ve gone through???!!! It’s the most exhilarating, liberating and amazing experience. The spirit of endurance!! (I’m 66. Developed symptoms for AML the day after my 65th birthday, January of 2019)

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Lori, you’ve given me a lot to think about. Thank you! Thank you for sharing part of your journey with us. It’s good for me to know about the setbacks so I don’t feel like I’m not being strong enough. It’s good to know to listen to my body as I will try my best not to over do it. So far this has been so easy (day 4 of 6 chemo). Everyone tells me take advantage of the good days because there will be not so good days. I know everyone is different but it’s good to know what people have experienced directly from them. Thank you for your encouragement to all of us on Mayo Connect. I hope to do the same soon.

waveg | @waveg | Oct 17, 2020

In reply to @tedwueste "Hi Gretchen- I am now 18 months post transplant. I had both Hodgkins Lymphoma and AML..." + (show)

Hi Ted, I think you are correct when you say the docs don’t say too much because everyone is different. I’ve pressed them a bit and they’ve given examples of the good and bad. Who knows where I will be in this spectrum. I’m glad you are doing well now. I will definitely let everyone know how my transplant goes and the time afterwards. So, if I’m offline, you will know I’m sleeping the time away. Thank you for your thoughts Ted! Gretchen

waveg | @waveg | Oct 18, 2020

In reply to @amtrakian "Hi gretchen. Hope you are doing reasonable. I can relate...I was inpatient at mayo clinic for..." + (show)

Hi Donald, Thank you for your note. So far things are going great! Wednesday, I receive my transplant and as I understand it, things can/will go downhill before uphill afterwards. I’m ready to face the challenge and with such a supportive team here, I think I’ll be strong. This is surely worth the fight and I intend to do just that. I will keep everyone, honestly updated. Gretchen

amtrakian. Don Castle, MPA | @amtrakian | Oct 18, 2020

Gretchen,

We are all part of a somewhat unique club; a family, really. I know that I am, and surely the rest of the cancer treatment community are hear to help. I have adopted the practice of not getting too far ahead, and always knowing there are almost always viable medical options and ensuring treatment plans available. I was diagnosed with a complex, unusual lymphoma case which began as stage 4b hodgkins lymphoma, then somehow turned into follicular non hodgkin's lymphoma. For me, perhaps the most difficult part is waiting for test results, pet scans, which I have next Tuesday.
I find that communicating with others helps me enormously.
I wish you happiness and health.
Don

Bob, Alumni Mentor | @grandpabob | Oct 19, 2020

In reply to @amtrakian "Gretchen, We are all part of a somewhat unique club; a family, really. I know that..." + (show)

@amtrakian - I wish you all the best on Tuesday Don. My blood pressure tends to build during this time as well.

Continue to reach out on Mayo Connect as there always seems to someone that is willing to listen and offer some insight and encouragement.

What is the time frame after the scans that you typically receive the results?

Lori, Volunteer Mentor | @loribmt | Oct 19, 2020

In reply to @waveg "Lori, you’ve given me a lot to think about. Thank you! Thank you for sharing part..." + (show)

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.