Husband with AML facing a stem cell transplant

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 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.

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

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.

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,
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

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. ☺️

@mary612 Mary, I really feel for you and your husband and all of these difficult decisions!! I’m glad there are some positive signs for you to hold onto, amidst all the uncertainty and anxiety.
That doctor would be a tough one for me: There are great advantages to an expert, and bedside manner is not important if they get the job done… But for me, good communication, hearing and respecting my ideas and questions, and keeping me in the loop as part of the treatment team is essential for my healing as a patient.
So if you factor out the bedside manner, are you feeling communicated with and listened to?
And if you are nervous about being in a strange city without support, have you considered temporarily moving someplace with a good amyloidosis center that is close to one of your kids or good family friends?
Sending you and your husband support and healing energy! Sherry

You have some difficult decisions to make. I had my chemo and transplant in Indianapolis and lived in southern Michigan, so it took good 3,5 hours to get to the hospital. My husband was my caregiver and made that drive to Indy numerous times. It was still doable, since we could schedule an early appointment, get everything done by noon and be back home by the end of the day.

Bedside manners are very important, since you feel like the doctor doesn’t care about you or doesn’t have your best interests in mind if they don’t have that skill. I recommend talking to a social worker on your team about your concerns. They may be able to give you good advice about how to navigate your experience with this doctor.

I had an excellent transplant doctor at IU Health. His name was Dr. Farag. It made such a difference and helped reduce stress for me. I was also hospitalized at a local hospital and had a very negative experience with a hospitalist there. I couldn’t wait to get discharged and never see him again.

Wishing you all the best!

Thank you for kind wishes and advice. I appreciate you sharing your perspective and experience.

Yes, the indecision about finding the best fit with the hematologist and the cancer center for most optimal transplant experience and medical outcomes adds another layer of uncertainty and stress.
The social worker and other professionals advise to find the care he is most comfortable with and avoid the regret down the line of “I wonder what it would have been like if we had checked out a different option.” We will hopefully make the appointment today to visit MD Anderson sometime in the next couple weeks.
Little setback last night though….my husband developed a blood clot in the arm he has his PICC line. This happened with the first PICC line he had put in a couple months ago. He started a blood thinner last night. Hope that helps and he won’t need to have this one removed and replaced.

Thanks again for your kind words.

Take care,
Mary