Husband with AML facing a stem cell transplant

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

@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

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

Hi Mary, just checking in with you to see how things are rolling along for your husband’s pending transplant. I know you were in the process of getting second opinions. Any decisions?

Hi Lori!
Thanks for checking in. Well, we had a great visit at MD Anderson. They recommend we stay in Chicago for the transplant which I am very relieved with.
They also agreed with the treatment path this far with a little difference of opinion about treatment between now and transplant. The transplant doc down there strongly encourages continuing chemo until just before transplant. We reported this to our team at NW and they are going to consider this and let us know their thoughts. He is currently due to end cycle 3 on May 5. The projected admission date is June 5. So there is a month in between which is good for allowing his counts to rise but the concern would be whether the cancer has time to rebound. He will have another biopsy May 14 so we’ll know more about how complete his remission is at that point. His last biopsy showed great improvement with minimum residual disease except for a small percentage of one of the mutations.

We received great news today that his donor and his medical center have agreed to the end of May stem cell collection! The only hurdle left is the clearance portion of the donor’s testing. We’ll know more about that on May 22. Plus we are working extra hard to keep my husband healthy and safe with his low immunity. His energy is good and we are happy to have a clearer path. The doc at MD Anderson gave us hope as well, which is everything.
I’m feeling exhausted from all of this and am working on building up my strength for the long haul. We are hoping we can take a little time away together before he is admitted.

Hope you are doing well, enjoying the beautiful blooms all around us and looking forward to summer.

I’ll keep you posted as things progress.

Thank you,
Mary

Hi Mary, That’s great news about being able to stay in Chicago for the transplant. Much easier than relocating to Texas for a few months, though I know you’d both do it in a heartbeat if it was the better option.

Regarding your husband having another round of chemo before June, if it helps, my transplant doctor had also recommended that as well. As you said, with his last chemo early in May, this gives your husband time to recover his blood counts and some energy again before transplant in June. It also helps assure that he has minimal disease. The cleaner going into transplant, the better. My transplant was June 28th (2019) so basically a similar time frame. My last week of chemo was May 16-21, so I was feeling pretty perky again by the time I got to Rochester June 13th for testing and admission.

There is also one more round of chemo, called Reconditioning, the week immediately prior to transplant. The goal of this chemo is to clean out the bone marrow and lymphatic system. It creates a blank canvas for the new stem cells. In the event that there are any bad actors left, the new immune system should recognize those leukemic cells and quietly take them out as they reemerge from dormancy.

Excellent news on the donor too! Love it when a plan comes together! Now’s the challenge for everyone to stay healthy and keep the anxiety level down, huh? LOL I know!! Easier said than done. The thing that cracked me up the most was all of this drama leading to transplant and it basically takes about 20 minutes for the actual event of transfusing the stem cells! Pretty anti-climactic. But what a gift of a second chance at life! We get new birth certificates! 😉 And yes, tell your husband he will get to celebrate 2 birthdays every year now!

I hope you two are able to get away for a little break somewhere to just veg out and try not to think of anything medical for a while. This does become all consuming with so much focus centered on your husband’s condition. This gets better I promise and then life resumes again for both of you. It all can feel overwhelming with the responsibilities of most everything falling on your shoulders, Mary. So just choose your priorities and if some inconsequential things fall through the cracks, let them go and rest when you can.

Right now it’s so gorgeous with all the spring blooms. I hope you’re both able to relax and enjoy the healing benefits of Mother Nature. Sending a hug!

Hi Lori,
Your words and encouragement are so soothing and exactly what we need now. My husband is so grateful to you for all your wisdom and positive attitude! I talk about you with him like you are one of our friends. 😊 Thank you for confirming the timing of your last chemo cycle before transplant. That’s so reassuring!

Yes, it can all be so overwhelming for me sometimes. I am grateful that things are aligning for the transplant, but there are so many details to attend to. I am anxious about a lot of things, mostly a good outcome for my husband. I have a deep faith and need to keep my heart focused on that. I so appreciate hearing things will get better.

We have a full day of appointments and a couple of tests with the stem cell team later this week. Today was the last day of oral chemo on this cycle! Yahoo! Here’s hoping we see his counts start to climb and his faitigue start to wane a bit so he can enjoy some activities over the next few weeks. Another biopsy is scheduled next week. Praying for best results possible.

I just signed a lease for an apartment located a half mile away from the hospital so I can walk back and forth instead of driving 30 miles each way in notorious traffic. Our dog is going to stay with a friend for the duration. I’ll miss her very much.

We have another amazing blessing coming our way as well in June. Our daughter is due with her second child and is scheduled to be induced on my husband’s actual birthday at the end of June. By that time, it will be his second birthday. 😊 The timing is extraordinary. So in the midst of all this hard stuff, we look forward to the birth of another grandson.

Lori, I believe your mentoring of all of us seeking refuge and hope in the dark days of diagnosis, alarming prognosis, and scary treatments, comes from a divine place. Thank you for your generous spirit, steady guidance, and sense of humor. Our burdens are a little lighter because of you.
Mary

Good morning, Mary. Well, darn it, your message made me all misty eyed. Thank you muchly for the gracious and kind words. It’s my pleasure to be able to help you and your husband over this rough patch in the road. Quite honestly there are moments, like this one, where I feel maybe I was spared to be a guide for others through their cancer odyssey. Never in a million years would I think that having cancer would have such a silver lining. But along my journey I’ve met so many amazing people, some whom have become dear friends, and had experiences I would never imagine because of what I’ve gone through and overcome. It’s in my nature to help and give back so being associated with Connect has been the icing on that cake.

I know this entire experience can feel overwhelming for both of you. But from what I’m reading, you two are a dynamic duo and quite the team. You’re doing everything thoughtfully and systematically. The details will fall into place. Brilliant move leasing the apartment that’s nearby. That will reduce your anxiety hugely. Do you need any suggestions for what to pack? I recently wrote a reply to another member who will be having a SCT later this summer. Maybe take a look at this post: https://connect.mayoclinic.org/comment/1059221/

You won’t need the segment about lodging. But there are 2 links for caregivers. Pretty sure I posted those for you before but now that you’re getting closer, it will be a refresher. Also, there’s a quick list of things I found helpful to take to the apartment where we stayed for 3.5 months.

I’m sorry about your dog not being able to come to the apartment with you. Wonderful that you have a friend who can take care of your fur baby! One less stressor for you!

Aww, and having a new grandbaby in the midst of all of this medical drama will be such a special gift! All these ‘birthdays’ at one time! This will be a memorable time of the year for decades to come.

You’ve got this! Trust the process, trust the team and let them do the worrying for you both. Just get through one day at a time and the worst will be past soon enough.

Prayers for a clean biopsy next week! Hugs, Lori.

Hi Lori!
Hope you are doing well and having a good week.
We just received news that my husband achieved complete remission with no signs of the mutation. Prayers answered! The most recent biopsy shows no new blasts and is hypocellular which they say is because he just completed the last cycle about 5 days prior to the biopsy. So it is hopeful and a favorable position to be in heading into transplant. Admission is June 5, and the grand adventure really takes off!

I wish I could say I am feeling a lot lighter with the great biopsy news but the heaviness of all this continues to weigh us down. We are trying to enjoy a few days away but the realities of our life now come creeping back in. Given the timing of your transplant you know the feeling of what seems like everyone around us is getting ready for summer, making plans and enjoying the longer days, while we are in a scary limbo with much different plans for the summer. I am grateful, don’t get me wrong, it’s just all the little losses that add up to silent grief. I took some advice today that I heard recently and made a list of the personal losses I am experiencing as a caregiver. It helped a bit I guess as it forces me to give it voice and acknowledge it even if it’s painful. Better than getting the grief stuck in my body and unexpressed.

One more thing I wanted to mention. The team is going to put my husband on a maintenance dose of Azacitadine and Venetaclax around day 60 post transplant and after he is weaned from GHVD drugs. Do you know anything about how well people are doing on this regimen?

As usual, I appreciate your ear, your empathy, and encouragement!

Mary

Hi Mary, Boy do I ever have memories flooding my brain this morning. Those months before, during and immediately after transplant were life defining for both my husband and me. I sure do remember having to put the summer on hold and feeling a sense of loss for all the things we’d be missing! I also felt a level of guilt being the one that forced us into that position. That was a stupid thought because this illness was nothing I caused nor could have controlled. But it was something we could treat and potential cure! So onward…summer would wait. And actually my husband had a great time in Rochester that summer and kept very busy.

A couple weekends a month our daughter would drive down from Mpls and ‘baby sit’ me so my husband could go back home to check on things. It all worked out so well and time sped past quickly.

Now, 5 years later, the lost summer is forgotten and I frequently consider all of the opportunities, experiences and accomplishments I’ve (we’ve) been able to have because I had the transplant. Two days ago we celebrated our 50th wedding anniversary together. That would have been impossible without the transplant. So we both happily agreed it was worth putting that summer of 2019 on hold.

I think once the transplant journey gets started, you’re going to find you have free time to zip back home to check on your house, gardens and hopefully visit with your dog for a few hours if you feel it’s appropriate. We all cope differently with extreme events and there is a mourning period for each of you because there are changes, losses, adaptations ahead. Ugh, I hate the term new normal, I refer to it as my altered reality, but you will eventually find a rhythm to your days and this will just be a different summer! Doesn’t mean bad, just different. 🙃

That’s fabulous news about your husband’s clean biopsy! A big hurdle out of the way. Though I get what you’re saying…now it’s really going to happen and feeling pretty real! My best advice…Let his team do the worrying for you. This is not their first rodeo and they have his back! They want success for your husband as much as you do.

While this wasn’t in my personal experience, I have read recently of more patients with MDS and AML, who are at high risk and having a bmt, being placed on a maintenance dose of Azacitadine and Venetaclax after transplant. It’s like ‘belts and suspenders’ to help ensure encouraging responses in high-risk MDS/AML. Two people whom I mentor locally, one with her transplant last year and another who had her transplant about 6 months ago are both on the maintenance program and doing well. No signs of relapse!

I’ll be counting down the days with you, Mary! Sending positive vibes your way! Don’t forget to breathe! 🙃