Husband with AML facing a stem cell transplant

Hi Lori!
Happy +1884 Day!!! Wow, that is so fantastic, inspiring, a blessing beyond measure. We are so thankful for you and your recovery that in turn, gives us all much needed hope!

Dane’s hernia was confirmed by his stem cell doc to be something he won’t be able to treat invasively until after he is off immune suppression meds anyway. So, unless he develops other worrisome symptoms in the meantime we are going to try to establish with a surgeon, and when the time is right, get it taken care of.

Yesterday’s clinic visit yielded continued stable lab values. Doc will probably start tapering the tacrolimus in a couple weeks. He even suggested that since Dane is so stable, he could skip his weekly clinic visit next week, our choice!
Well let it ride and see what the week brings, but nice to have it offered.

I’m still hoping for the CD3 Chimerism number to increase, which they say should come up after the tacro levels decrease. 🙏🤞
His last CD3 value was 77, an upward trend since transplant, at least. Our NP said yesterday that some patients Chimerism values are all 100 right after transplant and others see the CD3 lagging and slow to rise. Hope there is no clinical significance between the two.

He’d love to have the catheter pulled but we are waiting for the new hematologist to determine that after she makes the call about maintenance chemo regimen.

I suspect you are correct that his energy and overall sense of well being will really become stronger as he moves into the last third of his first 100 days.
One sign of that is he is starting to think about what he wants to do with his time, because he’s feeling good enough to be a little bored. 😊He’s still struggling a bit with the emotional trauma of this ordeal. Talking with a therapist and some meds are helping with anxiety and sadness when it creeps in.

There’s still a lot to contend with for both of us, physically and emotionally!
But the sun is a little shinier every new morning when I hear his voice stronger than the day before, and things like talk of adding ice cream to his diet because he actually has more desire to eat help me breath a little easier as we move along our new reality.

Thanks again for your incredible support!

Have a beautiful weekend.

What a wonderful report. It is good news to hear Danes energy is increasing. The chimerism I was told can change. I have my next BMB in October, so I will see where i stand. I know at my caregiver's house about day 75 i knew i wanted to go get my car. Till then I only went to Smart and Final a few times and walked outside. Looking forward to activities and the life we once knew feels good. Lori often says we will not ever be 100% what we were, but we can be the best % possible as we live life.
Funny for men, as if their hair is gone, people just think they wanted a shaved head for a hot summer. Ladies need to plan ahead. I have watched bald women at City of Hope and think no way will i ever do that. I will wait until my hair has grown and inch or more all over. Who knew I would be envious of men, and some women, for this luxury.
Time flies after we pass the 100 days. On most days, if I did not have a nearly bald head, you would never know I had anything wrong.
I understand about the emotional aspects and i have this circle of friends that have kept me going. Yet, having access to professional who understand is vital to continue walking through this journey of transplants.
I love updates and look forward to more.
Prayers that all in this transplant thread keep living life a day at a time.

Hi Lori,
We are at day 85! Met with the new hematologist yesterday and she recommended Aza/Ven maintenance going forward. He continues to have the Tacrolimus tapered and is doing well. Looks good, better energy and all labs are stable. The third chimerism number is at 92 as of a couple weeks ago. So he is in a strong position as we move into the next has of treatment. The maintenance is being recommended because he had “high risk” AML. It’s a disconcerting reminder, but our reality.

I must say, I felt quite emotional all day yesterday as I see again, our reality, reflected back to us via this new member of our team. She was warm, hopeful and comforting. She’s even going to confer with the MD Anderson doc we saw in April about the maintenance chemo dosage because there was a slight difference between what they recommended and what she usually prescribes. It’s just the relapse risk that continues to lurk. Guess I have been in transplant mode and keeping him healthy, grateful for his progress. Now we are onto another path, even as he will continue to be seen by both the stem cell team and the hematology team.

I think you mentioned you know others who are on maintenance chemo and are doing well. Any insights you have to share about their progress would be appreciated.

With much gratitude for you, wishing you a beautiful day.

One more question about Covid and Flu vaccinations….
My husband’s stem cell doctor said he can get both vaccines anytime. This is relevant with the surge in Covid cases happening currently.

As a reminder he is at day +85. The doctor indicated that there is a 3-5% chance of either vaccine inducing GVHD but feels it is worth the benefit of the vaccination. We are surprised he is allowed to get these vaccinations so soon after transplant. Has anyone else received their Covid or Flu vaccines during the first months after transplant?

Hi Mary! Dane is on the homestretch now with 14 days remaining before that elusive 100 day mark! Didn’t it seem like forever away when he was at Day 0?
Day by day, the slow recovery process continues. It can’t be rushed but you see incremental changes daily as the new stem cells/new immune system start taking over their new home to keep Dane safe. He’s growing stronger with more stamina, appetite is improving and mentally he’ll feel more confident about his future.
You’re right, he is entering a new phase beyond just the basic survival mode of the first 3 months. He’s getting on with the rest of his life. He may have days of euphoria where he feels invincible and then days of doubt. It happens to all of us! At some point, he’ll actually get past the daily thoughts about what he went through. If it wasn’t for my daily discussions with members on Connect, I’m pretty sure I wouldn’t even be thinking about my transplant much anymore. I feel perfectly normal. Though subconsciously I’m cautious about illness prevention but that’s in my wheelhouse anyway.

It can take months to a year or more for the new immune system to mature. Right now, consider his immune system to be similar to your new little grandson’s! He was born almost the same time as Dane’s rebirth! ☺️

Because Dane was in a high risk category for AML, his doctor wants to ensure that he doesn’t have a relapse. AML is tricky. Some particular mutated cells can be elusive. They’ve been known to evade chemo by going dormant, then hiding out, only to reemerge at a later date. That’s why a new immune system was ‘installed’. Dane’s old immune system no longer recognized the cancer cells associated with AML. If there be a reemergence of the cancer cells, his new immune system should recognize those. That’s considered a Graft Vs Tumor response and his new cells should attack and eradicate the cancer. Because of the tenacity of some of the cells, that’s where maintenance therapy can come into play.

There have been great advances in targeted drug therapy for some of these mutations such as the FLT3 mutation. During my induction/consolidation treatments for AML, I was also taking the abrogating drug Midostaurin to target the FLT3 mutation. Other drugs, such as the combination Aza/Ven are given post transplant as a belts and suspenders measure to help prevent relapse of AML depending on the mutations.
I know it’s disappointing to hear there may be some post transplant maintenance therapy. But it’s been shown to be effective in improving relapse free survival and it may only be while the risk for relapse is a potential, not forever. From conversations with my transplant doctor, if there isn’t a relapse within the first 22 months, statistically the probability drops appreciably. Checking in with my friend who was on Aza/Ven, her maintenance was for only a year. She’s 5+ years post too and healthy! But each person’s case is different depending on background and mutations so it can be dangerous to compare with others. Just like infants…no two are alike and comparison can lead to misgivings about development, right? ☺️

In regard to Dane’s receiving flu and Covid vaccines, from my understanding it’s safe to receive flu and Covid vaccines at 1 month after transplant and all others at least 6 months to a year after transplant. No live vaccinations such as MMR. I had to wait over 4 years for my MMR.

Covid wasn’t around when I had my transplant but I did have a flu vaccine in the fall…that would have been around 4 months post. The usual soreness at the injection site and then mild fever and malaise the first night. Woke up the next morning and I was fine.

The first covid vaccines were available when I was 9 months post. (April 2020) I did have a flare up of my atypical GVHD about 2 weeks post vaccination…and with each subsequent covid vaccination. Symptoms settled down without incident about a month later each time. (I was in touch with my team the entire time and under their guidance). I also had a flare after my MMR. Because of that I am on a hiatus from vaccines right now and take extra precautions to avoid potential exposure. So, I can understand your trepidation with receiving the vaccines this early in the game. Most of my friends who have had a BMT have not had any flares or onset of GVHD! Even without a BMT our body’s immune system will launch a response…it’s normal.

However, since Dane basically has very little to no innate or adaptive immunity right now, with flu and Covid on the rise it may be worth the very slight risk to get the vaccine. If he were to get Covid or the flu, the risk of developing chronic gvhd of the lungs would increase. That’s what his doctor is trying to protect him from. If he develops gvhd issues from the vaccine, they can generally be treated quickly with a burst of steroids. It’s like stomping out little fires. So don’t live in fear of gvhd. We need some of that! It’s the ‘graft vs tumor’ effect that keeps us healthy. Some gvhd would show his immune system IS working. ☺️. Complicated, isn’t it! 😅

I love you posted all this info. I need to ask about my vaccines and when i get what. I will put it in my portal as sometimes i just need an answer not a doctor to review it with me.
Prayers Dane and you keep walking this road with eyes wide open and I hope your med team stays trusting to you two. His recovery is their goal.