Anyone had successful stem cell transplant for AML?

Sorry I didn't update sooner. I've lost track of the timing but about 4 weeks ago we learned that her bone marrow is now 100% donor! YEA! Then last week we go the results back from her bone marrow biopsy and there were ZERO MUTATIONS! YEA AGAIN! She will still have 8 rounds of chemo, 5 days in a row each time, but the Onc said that is a preventative just in case something was missed. Seems like she's recovering nicely. She has had a couple of rounds of GVHD with a rash, no itching, but the prednisone has been very effective. Her energy and her mood are both up and life is almost back to normal. I printed comments from Lori and Ted for her and they were very helpful (THANK YOU BOTH!!!) just in knowing what to expect and understanding that the first few months are simply just hard... 90 days from transplant on the 9th.

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Sorry I didn't update sooner. I've lost track of the timing but about 4 weeks ago we learned that her bone marrow is now 100% donor! YEA! Then last week we go the results back from her bone marrow biopsy and there were ZERO MUTATIONS! YEA AGAIN! She will still have 8 rounds of chemo, 5 days in a row each time, but the Onc said that is a preventative just in case something was missed. Seems like she's recovering nicely. She has had a couple of rounds of GVHD with a rash, no itching, but the prednisone has been very effective. Her energy and her mood are both up and life is almost back to normal. I printed comments from Lori and Ted for her and they were very helpful (THANK YOU BOTH!!!) just in knowing what to expect and understanding that the first few months are simply just hard... 90 days from transplant on the 9th.

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I’m so glad you are both doing much better Brad. Thank you for sharing your journey. It gives me hope and strength as I will be hospitalized at Mayo Jax for transplant next month.
Gretchen

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Sorry I didn't update sooner. I've lost track of the timing but about 4 weeks ago we learned that her bone marrow is now 100% donor! YEA! Then last week we go the results back from her bone marrow biopsy and there were ZERO MUTATIONS! YEA AGAIN! She will still have 8 rounds of chemo, 5 days in a row each time, but the Onc said that is a preventative just in case something was missed. Seems like she's recovering nicely. She has had a couple of rounds of GVHD with a rash, no itching, but the prednisone has been very effective. Her energy and her mood are both up and life is almost back to normal. I printed comments from Lori and Ted for her and they were very helpful (THANK YOU BOTH!!!) just in knowing what to expect and understanding that the first few months are simply just hard... 90 days from transplant on the 9th.

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Today is Day 100 after my wife's transplant and we were celebrating with pizza for dinner. We took our usual after dinner walk with the puppies and then it happened. I had taken the puppies to the car and she was throwing some trash away out in the grass at the trash can but, when she got back to the sidewalk, she caught her foot and fell on the sidewalk. LOTS of pain, scared, shaking and I'm in the hospital waiting room now waiting to find out if she broke anything.

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Yes, broken humorous. I don't know anymore at this point, just got x-ray results.

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On Thursday, September 17, day 100 after transplant, she fell. Turns out she fractured her humerus, public rami in two places (all that on the left side) and her sacrum. She was released to go home the next day and we struggled to manage with her being immobile that weekend. 8:00 on Monday, I called a home care service and they were out twice to same day. We managed until Saturday the 26th when her pain meds (hydrocodone) stopped working and I had no one call (ortho's office never returned any of 5 calls) so I had no choice but to put her back in the hospital. After me complaining over and over that Norco (hydrocodone) was not working, they finally switched her over to 1000 mg Tylenol. She was spacing out all the time on the opioids but was more clear headed on the Tylenol. Tuesday, the 29th, they moved her over to a rehab facility and I had to start all over with NO NARCO!!! I would have thought the hospital would have given pain meds history. Her jaw had started swelling and my son just called me and said he spoke with ENT and it's caused by invasive fungal sinusitis which is rare and pretty bad news. Friday, I went to rehab to find that they'd moved her back to the hospital because she was bleeding from her eye, nose and mouth (related to the fungal problem) and her platelets were at 5. Later that day her oncologist in San Antonio (we live 50 minutes away) wanted her moved to the hospital there so she got moved again. The next day, I went in to see her and the oncologist working that floor told me that her AML had returned and her blasts were at 42% which was higher than the first time she was called back to MD Anderson. At that point, I called our son and daughter to come but, by the time they got there yesterday evening, she was delirious and wasn't able to talk to anyone. She was then moved to ICU and is there now. She's on intubation and is knocked out with pain meds so at least she's not in pain. She has an infection in her blood stream which supposedly caused the delirium and that's the first step, to try to get that under control. NOTHING is going her way at this moment and I don't expect she'll ever recover. We have had many conversations over the years about quality of life being the top priority and she has none now and likely won't have much later with all that she's up against. The best I can hope for is making her as comfortable as possible. I loved kissing her near bald head today, I love her so much!

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