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Acute Myeloid Leukemia with Aberrant CD7

Blood Cancers & Disorders | Last Active: Dec 22, 2021 | Replies (41)

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@lodi

Hi Lori-

Forgive me for the delayed response. We are due to have the transplant on the 20th of this month and we had to make some tough decisions. We are doing the transplant at a community hospital in Orlando. My preference was to go to a larger academic facility but my long term spouse/partner wanted the comfort and convenience of our own home, which I do appreciate. Plus treatment is so challenging after the 90-100 days are up, and you return home.
They will not treat him locally unless he does the transplant here as they have too many patients as it is to manage. So he'd have to go to ER here and be transported by ambulance to Moffitt in Tampa. Very complex.

We would have had to get an apartment for 90-100 days as well in Tampa. So, we really don't have the luxury of leaving town, the doctor here has a very good reputation and the nursing staff is wonderful as we did his first chemo treatment on their transplant floor. They have 32 patients and all are managed by one doctor and one clinical director plus support staff. There were two doctors, but a very fine doctor just left to take another position.

Regarding communication, the medical world from my experience is riddled with problems on every front and I've had a fair amount of experience navigating that reality for both my parents, myself and friends. So I am very confident in my patient advocacy skills which can only take you so far. Doctors are stretched, time is short and often they find it an annoyance to answer questions, almost across the board. Likely that is less so at larger academic facilities as they have a much larger staff.

So, there you have it. Much more to this story, but too long for a forum.

I have an important question. He had one induction and one consolidation treatment. The transplant is scheduled 60 plus days from his first day of his consolidation. I have been told that this is a very long time to wait and there is a concern as a result. Some doctors believe he should have some low dose chemo in pill form prior to the transplant. It is very worrisome.
He is having a BMB on Thursday and they will be looking for less than 3% blasts.

We are both suddenly getting very frightened and sometimes we just don't have control over our lives. That's just how it is. No one can comfort you really as no one is living your reality. And as I likely mentioned, neither of us have any family or children but we do have some very nice friends fortunately and we have had a wonderful therapist who is more like a friend for the last eight years.

Thank you again for your kindness. I was put together with another caregiver who is exceptional and we have so much in common. She is proving to be invaluable and is so generous with her support.

Take care,
Lodi

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Replies to "Hi Lori- Forgive me for the delayed response. We are due to have the transplant on..."

Good morning, Lodi. Now I’m late in responding! Lots of car travel in the past 2 days. So grab a cup of tea or coffee…I’m up for a chat today!

A little more than two years ago, my husband and I were at the same point in treatment as you and your spouse. Where you’re watching the clock tick, filled with anxiety and uncertainty of what’s to come! Whether the leukemia will remain in remission or at least be controlled enough for the transplant. It’s so stressful and my heart goes out to both of you!

I swear, the caregiver shoulders more of the brunt of this journey. As a patient, we’re pretty much along for the ride, directed by the transplant team. The information you receive as a caregiver just can’t completely prepare you for the daily changes or obstacles you’ll be facing. It’s not until something is actually occurring that you can put the relevance of the information to the test. In the beginning it feels overwhelming! But the transplant team should have numbers for you to call and usually have great support staff such as Nurse Practitioners and Coordinator so help you and your spouse along every step of this journey.

And you’re so right, the lack of control over your lives right now is frightening. My husband is a chemical engineer. Everything in his world is mathematics, statistics…with predicable outcomes. My AML journey initially derailed his orderly world until he got back on track. You’ll both get there again too! I wish I could reach across and give you both a hug.

60+ days is a stretch between consolidation and transplant. It’s good to see your spouse will be having an BMB tomorrow to check progress. The results will be important. If there are few blasts that’s the best news…then full speed ahead. However, if a significant amount of blasts are present the doctor most likely will suggest another round of consolidation along with a abrogator such as Midostaurin. It could delay the transplant another month or so. There is evidence that the cleaner the biopsy going into treatment the greater the success of the transplant. So a delay, while disappointing could be beneficial if needed. I went through 1 induction and 2 consolidations because of the timing with getting my donor.

I’m just assuming because of the AML this is an allogenic transplant. I’ll be upfront and let you know it’s an arduous, complex procedure and often comes with unexpected complications that need to be managed on short notice along the way. I had several return trips to the hospital for some issues during the first 100 days. Will you have 24 hour access to the clinic if needed?

As you’ve possibly learned through your research the first 100 days are crucial to avoid infections or illnesses. The new immune system is generally very aggressive and looks at the body as an invader. So if it perceives a threat it can over react, attacking the body and that’s called Graft Vs Host Disease. After the 100 date mark, generally any GvHD tends to come on slower and is less challenging. I’m happy to talk about that in the future if you have any questions.

But please know there is light at the end of the tunnel. If successful, life returns to normal! I just read a FB posting today in the memory feed today. It was day +37 post transplant for me and told a remarkable change in that month’s time! Now I’m 2 years later 100% normal!!

You’ve mentioned that you have been paired with another caretaker. That’s excellent. She’ll be a great resource to help you through some hurdles. Does your spouse have someone who has gone through a transplant to speak with? Unless someone has walked the walk they can’t give really know what that journey is like
I’m here to offer any encouragement and will give him frank, honest answers. This is no walk on the beach and will test his resolve. But from experience I can tell you, the outcome and the exhilaration when you realize you’ve beaten AML with the help of a stranger’s immune system is extraordinary. The spirt of endurance is the greatest adrenaline boost you can imagine.

Does your partner have a secured donor yet?
Wish him well with his BMBX tomorrow. Finger’s crossed!