Husband with AML facing a stem cell transplant

Hi Mary, Being a caregiver is a really tough job. I watched my very capable and strong husband age while being my ‘rock’ through all my treatments with AML and then SCT.
As the patient, we tend to just go with the flow and do what the doctors say, take our meds, endure the treatment and side effects…personal focus is quite selfish on our part. We just don’t have the capability or energy to do anything else those first couple of months.

Our caregivers watch us and feel helpless…and bear the stresses of being ‘chief, cook and bottle washer’ for everything else from domestic to medical! Each clinic will have their own protocol for caregivers. Some, such as Mayo Rochester where I was, require 24/7 caregiver for 100 days. I was also an outpatient, which I loved! We rented a hotel suite for 4 months and set up housekeeping 2 blocks from the clinic. I felt that I recovered faster in my ‘own home’ where I could amble over to the kitchen to grab my own food, my own bathroom, etc. I wasn’t in the hospital unless I needed to be readmitted for anything…which I was. But then I could return ‘home’ to the hotel”. My husband hiked daily, brought his computer so he had a little office, he did the cooking, took me to appointments sometimes several times per day, and babysat me. Rochester was an awesome place for both of us because I was taken care of at the clinic and he felt ‘at home’ walking around the city neighborhoods or hiking the trails.

Some clinics, the SCT patient is admitted to the hospital for many weeks or more before being released to a temporary recovery location. I’ve also learned that some caregiving is actually required while IN the hospital. So make sure you ask each clinic so that you know what’s expected of you as a caregiver.

I do have a really good guide for caregivers that I had while in Mayo. While some of the details may be different for each SCT clinic, the basics of care will be the same. Look at the menu first and choose ‘Allogenic Transplant’. That will be what your husband would be having. Read it over and let me know I can help you in any way.
https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/#ch-tab-navigation
Mary, I know this is a lot to deal with up front. But it’s all going to work out and unfold along the way. He’s in a really great clinic right now so if the thought of relocating for months is troubling… just saying. ☺️

Good morning Lori,
Yes it’s been a whirlwind couple of days! My emotions are all over the place.
You make a great point about our doctor not needing to be our friend. However I am also a bit frustrated by the communication with our primary hematologist. She is busy, has a huge practice, and isn’t warm and fuzzy to begin with. But we know she is a leading expert. So there’s that.

We are going to pursue a visit to MD Anderson. But thinking about all of that, being away from home by myself as a caregiver in a new city really makes me anxious. And thoughts about the aftercare post transplant is really starting to creep in and make me anxious. And then there’s the fact that we were advised at RUSH that there could be a change in direction in his treatment (clinical trial?) if they don’t clean up the cytogenetics in his blood.
So, although I’m trusting, or at least trying to trust and keep the faith, this will all be revealed to us soon enough I’m really struggling with all the uncertainty.
You see he has mutations and chromosome changes that are very difficult to treat and relapse is a real possibility after transplant. Thanks again for holding positive thoughts and encouraging me. Shared your email yesterday with my husband and he was very encouraged and impressed. Your kindness and commitment to all of us, complete strangers, is such a blessing.
Mary

Good morning, Mary. Your husband and you have some big decisions ahead! Wow, so much going on right now with insurance, travel, where to go…
One thought is to not let the current hematologist’s less than pleasant bedside manner factor in at this point. You want her expertise, not her friendship. AND, if you opt to stay for your husband’s transplant at NW, the transplant doctor and team will take over all the care so the hematologist will move to the background.

MD Anderson and Rush…that’s a dream team in the making! If travel isn’t a hinder for you then a 2nd opinion there is worth exploring.

And of course, I may be a teensy bit biased but there’s Mayo Clinic. Their transplant program and teams are world class. My Rochester team works closely with my home cancer clinic for routine blood work or anything that pops up that doesn’t require my returning to Rochester for treatment.
I’ll be reporting to the Mother Ship next week for my 5 year anniversary appointment!! That’s an exciting milestone!

Fantastic to hear about 3 potential matches. The pieces are all falling into place and the news is good about your husband’s response to the chemo. You’re right, the cleaner he is going into transplant, the better. There is also one more round of pre-conditioning chemo the week before transplant. That’s like ‘auto clean-power wash’ on my dishwasher. 😅 Squeaky clean marrow after that.

What a crazy day you two had. Phew…take a breather!! Let’s hope today is a little more chill! Thanks for the update and we’ll all keep fingers crossed for a good biopsy on the 9th! Hugs!

Good morning Lori,
My husband finished the 7 day IV infusion of cycle 2 a couple days ago. He continues to take an oral chemo drug everyday.

His counts were amazing yesterday with his WBC’s in the normal range for the first time since this all started. They say it’s likely a rebound from the end of cycle 1 and his counts should go down again in the next couple weeks. He is tolerating the treatment well! We are so grateful for that. Next biopsy is April 9. We are looking for any signs of the mutations and chromosome deletion to be gone before they will consider it a full remission. It can be tricky to get to that point so who knows, he may need an additional cycle after that. And we all know the more those cells are eradicated before transplant the better his chances are of not experiencing a relapse post transplant. So that is my prayer now. I feel like my prayers for “hopeful signs” are being heard as well! 😊
We have a lot to consider though when it comes to staying with the NW team or possibly seeking another option and possible treatment at MD Anderson.

Sorry, accidentally hit Send on my initial reply….

We are trying to get comfortable with the hematologist/oncologist at NW. She is considered one of the best but her bedside manner leaves my husband feeling unsettled and not as hopeful as we’d like. We like her Nurse practitioners so that’s positive. We are really impressed with the stem cell transplant doc and transplant nurse coordinator at NW as well!
We also met with the NW transplant coordinator by phone yesterday (it was a big day in many ways!) and we learned that they found 3 - 100% donor matches for my husband. All male, in their 30’s and located outside the US. We are thrilled. We know this is a marathon but this is an important milestone.

Back to the second opinion…. we really liked this doctor and her manner was easy, comforting and intelligent. RUSH is about to announce a partnership with MD Anderson. We are considering trying to get an appointment at MD Anderson with the thought that the transplant could be done there and post transplant care could be done with this doctor and the RUSH team in Chicago.
It’s a lot to consider given all the details surrounding travel there, insurance coverage (he goes on Medicare 6/1/24 so we could have that option effective then but our current policy wouldn’t cover him there).
So as you can see we have had a lot of developments in 24 hours!
We have a lot to think about and know that our comfort with his doctor and the entire care team is very important.

Thanks again for checking in. Hope all is well with you.
Mary

Hi Mary, just wanted to check in to see how your husband did with round two of his chemo. From my experience, each time seemed to take a little bit longer to rebound with energy level. You mentioned this was another induction round. So he may have another round called consolidation which is a good way of ‘sweeping up’ any remaining cancer cells.
The challenging thing with AML is that some cells can become resistant to the chemo, they can mutate or even go dormant and hide out only to emerge months later. So that’s why the stem cell transplant is important. From my experience and understanding on how this works, is that with mutations, your husband’s immune system no longer recognizes these as cancer cells so they are allowed to proliferate. It is the hope that a new immune system from a donor will again recognize the cancer cells if they emerge and snuff them out. It’s amazing and it can work. ☺️
So tell him to hang in there! Things get better. Hugs.

Hi Debbie, Proximity to the clinic where you’ll have the transplant is helpful. There are frequent trips (and followups for years) and dending on the clinic, there are different timelines for the procedure.

I had two options in my state for transplant. Both were large teaching clinics with a great deal of experience with transplants. However, we live 4.5 hours from Mayo-Rochester and my husband and I decided, along with my local hematologist oncologist, that was where I should go. We never regretted that decision.

We relocated to Rochester for about 4 months where Mayo’s SCT program is outpatient. We had to remain near the clinic for 100 days so we ‘leased’ a hotel suite at a Residence Inn. It became our home away from home where my husband set up an office for himself, he hiked daily, cooked meals for us, accompanied me to all my appts, etc., and I had a place to recoup within 2 blocks of the clinic.

With your clinic, you’ll be in the hospital for a month and nearby for 2 weeks. Each clinic has their own protocols and expectations for caregivers. I needed one 24/7 for that 100 days. You may not need one for that month you’re in the hospital. So that will be a good question to ask.
~When and for how long do I need a caregiver?

The advantage of a large clinic is if you have any unexpected issues that come up, there is a deep bench of specialists to assist the transplant team in patient care.
You may want to ask;
~If there is an issue that requires another specialist how easy is it to have collaboration between doctors?

Insurance is another big consideration. I was 65 at the time so Medicare did cover everything. Had I stayed in the state, they allowed $10,000 towards lodging. But we opted for Rochester so we did end up paying our lodging but the cost of the transplant procedure, brief hospital stays, meds, procedures, etc., were covered.

It’s important you feel comfortable with your transplant doctor and your team. They become your new family and the doctor calls all the shots behind the scene. so trusting this person is vital.
You’ve had a 2nd opinion and they’ve agreed with your diagnosis and treatment plan. So if you’re happy with your current hospital, there is comfort in familiarity. And having it nearby is helpful because you’ll be a frequent flyer. ☺️

One big question to ask is about follow up appointments.
~How long will followup continue??
I know of some clinics where the patient is no longer followed after 2 years. With Mayo, I was told “We’re married for life” by my transplant doctor/team. They meant it. I’m 5 years out and still in contact with my doctor and his team. I am just now moving to an annual visit after 5 years.

It’s hard to know what other questions to ask because it’s such a personal consideration for each patient. But I found this really helpful guide from Be the Match (procurement center for marrow donors). This will give you some ideas on what’s important for you:
https://bethematch.org/patients-and-families/about-transplant/treatment-decisions/questions-to-ask-your-doctor/
I expect you’ll have some answers and actually more questions after your next visit with your doctor. So let me know what you find out, ok?

Hi Lori,
Your perspective is very helpful. And you’re right, my jakifi and the hydrea are very easy for me with minimal side effects so I get what you are saying about wanting to do sct while in good health.

I live about 45 minutes from the hospital, and they said, for sct - 1 month in hospital then at least 2 weeks in accommodations very close to hospital and then can go home and be 45 minutes away. How did you decide on the best place for your stem cell transplant? I’ve been happy with the care I’ve gotten at my current hospital but was wondering if bigger cancer hospitals offer anything better and how to evaluate the best place to have it done. I did go to a bigger cancer hospital for a second opinion and they concurred with everything done thus far and the need for sct.

Are there any questions you’d suggest I ask stem cell doctor at this point to evaluate best place or just general questions ( we had initial meeting and have a follow up to go over initial match results etc).

Thank you,
Debbie

Good morning. I am an 11 year survivor of AML after stem cell transplant lift of life from my sister. I remember the uncertainty that set my mind racing and my heart into fear when I was diagnosed. I am a woman of faith, so I will offer this thought to hold onto as you journey forward. We all have God’s phone number, when we need help. It is found in Jeremiah 33.3. “Call to me and I will answer you and tell you great and unreachable things you do not know.” Please know that we are here to support you.

Hi! Oh gosh, I know you have a tough decision ahead of you. It’s easy to drag your heals while you’re feeling fine. But I can tell you from experience, you’ll want to have this done before you morph into AML. It would be much easier now that you’re relatively healthy and not having the chemotherapy required for the AML. Right now you feel good, your condition is stable and you’re strong. Your lupus is quiet, you’d have time to plan your next steps and get things lined up for the transplant.

I realize you’re taking Jakafi but that’s different than the rounds of chemo used to reduced the cancer cells in the blood and bone marrow once you have AML. That weakens your body and your immune system much more than Jakafi.

I also want to point this out…the Allogenic transplant, using donor cells may also cure your lupus. That’s an auto immune disease and you will be getting a new immune system! Whatever allergies you’ve had, autoimmune diseases, etc. may disappear.

Depending on the protocol of your clinic you’ll be expected to have a caregiver 24/7 for several months and to live near the clinic for 100 days. But some clinics have different limits so that’s just from my experience.

My suggestion is to not go online to search for stories or information about Stem Cell Transplants. This will do nothing but make you anxious. When you make the decision to go ahead, your transplant team will be your new family. You need to learn to trust them and to let them be your guide. You’ll have educational classes to give you all the details.
The rest of the info you can get right here. I promise to answer any and all questions honestly. When you’re ready, I also have a ton of information about what to pack for an extended stay away from home, what to expect during transplant and what to do when you go home. Sanitation will be a huge part of your life. There are several other members here who have gone through this procedure as well. We have your back…
Do you live near a transplant center?