AML successful treatment

Welcome to Connect, @justjoan11. You’ve joined an amazing support team members who have been diagnosed with AML. I’m so happy to hear that your husband (and you) are under the care of the outstanding hematology dept at Mayo. I was just there for my annual follow-up at Mayo Rochester…my home away from home, having had AML and a bone marrow transplant 6 years ago.

@lindagi is one of several members who have benefited from the tremendous breakthroughs in the treatment of AML over the past few years. This form of leukemia used to have a less than favorable outcome for those of us in our ‘golden years’, especially if a bone marrow transplant wasn’t an option. With the drugs such as Venetoclax and Dacogen, Vidaz, etc, there is hope for many enjoyable years ahead.
What treatment has been recommended for your husband? Which Mayo Campus do you visit?

Thank you for your post! It is very encouraging!
I am on the exact same regiment with exception of number of days. My treatment is 1/2 which is working really well for me with 5 weeks between treatments. So very grateful for the research that has enabled new treatments to be developed for those of us with AML who cannot, or elect not to have a Bone Marrow Transplant (BMT)!

Wonderful story. I am a blood cancer coach and. Had a bone marrow transplant for AML in Feb 2023 from my son. I receive patients from various sources, the primary being HealthTree but also from LLS (Blood Cancer United), NBMTLink, and here from Duke Health. I have had (and have now) “coachees” who are in similar places. They couldn’t get SCT but went on the Venetoclax + Hypomethylating agent and the results have been amazing. Not everyone gets the 2+ year effect but some do and it is such a happy thing. I am happy for you and others for whom it has bought them Time, a most precious resource while we are here on this plane of existence.

Thank you for sharing your story.

Oh Lori, you cant possibly know what a gift you gave me saying '6 years ago'~ thank you. We came to the Rochester Mayo clinic on 9/5- the same day we were to fly to Spain to hike for a couple weeks. The irony...
I send you good vibes, mojo & energy.
xoxo Joan

Hi Steve, I saw your initial post regarding having AML/SCT in the Prostate Cancer Group first and replied to it before this one! I modified my reply after seeing this post in the Blood Cancer Group, so…you’ll be getting a double welcome! 😄

As a fellow AML/BMT survivor (post BMT +6 yrs) (and AML/BMT mentor for several organizations) I’m looking forward to hearing more of your journey. Please feel free to jump into any conversations where you feel you can share your experiences.

Have you experienced any issues with GVHD?

Hi Joan, I’m so sorry you and your husband had to miss out on epic hiking trip to Spain…for now! However, don’t lose faith! Look at this is a little side trip on his (your) life journey together. Your husband couldn’t be in better hands than his team at Mayo. As I mentioned, I wouldn’t be here if not for them! If all goes as planned you and your husband can hit the ground running back to Spain for your planned excursion!
Wishing him all the best…and you too, as the caregiver. You’re a united team! Sending those good vibe and positive energy right back your way! Hugs!
Is your husband now on a treatment plan?

Bless you Lori for the message~ for uplifting tone & the conviction with which you said it. He is on Day14 of chemo for AMML. He has some pesky mutations so BMT is already being discussed. He was a very sick guy with 40% blasts (& whatever else) when he came in. Many scary things happened in 1st 5 days, but all were handled with precision & he started clhemo on our 6th day here.
So grateful we're here.

Hi Joan. AML can be one tenacious menace, especially with some of mutations that present challenges along the way. Waving my hand in a ‘me too! me too!’ symbol of solidarity with your husband. I know exactly what he’s is going through and the roller coaster ride of both health and emotions for both of you.
The day of my diagnosis I had 80% blasts and 3 mutations tossed in for good measure. Together, for my husband and daughter, I forged ahead with aggressive chemo for several months and then had my BMT at Mayo-Rochester.
While the journey wasn’t easy, I am alive and healthy today because of the path we took! The BMT was a 2nd chance at life. I’d be gone for at least 5 years by now…
So please, if there is anything I can help you with or any questions large or small, don’t hesitate to post them. We have an ever-growing group of, whom I refer to as my BMT Posse, who are here to offer encouragement, support and hope when you need a lifeline!
Here’s a little bit about my journey and how I became a mentor in this group, in an article Mayo staff writer’s published a few years ago. https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/

Wishing you and your husband all the best during this veer from the norm!
Do you live near Rochester or have you had to relocate during your husband’s stay?

We're from DSM, where our 2 children, 4 grandchildren, the best Golden retriever in the world also live. We had our consult with BMT doc today & hubby (Phil) will be having his when all the moving parts become aligned in 3-6months. We don't know whether to buy, rent, airbnb, or what- but we are looking at a long stay in Rochester.
Things move so quickly & change even faster that I 'know' to take it as it comes...But I feel if I can do anything now, it has to br better in future.
Im rambling, Im sorry
Im scared
Im grateful to Mayo & people like you who are giving me hope.
Joan

@justjoan11 Hi Joan, It’s too bad we hadn’t talked earlier or I’d have popped into visit you and your husband at Mayo when I was in Rochester last week! I’ve done that in the past when I know there’s someone from Connect at the clinic. ☺️

You and Phil have some big decisions ahead. My husband and I had similar discussions when I was facing my transplant…what to do about the long-term stay in Rochester. We thought of the same options,,,buy, rent, airbnb, etc… our hometown is 4 hours from Rochester. DSM is 3?
We would be there for almost 4 months and had decided to lease a 2 bedroom/2bath suite at the Marriott Residence Inn which is two blocks from the clinic. It’s easily accessible via the subway system, which proved handy with the frequent daily (sometimes more than one) visits to the clinic. For my husband, it was walkable to most everywhere, had a full kitchen and my husband set up a serviceable office for himself too!

After the 100 day period when Phil is able to move back home to DSM, initially there will be a follow-up in Rochester about every two weeks. That then progresses to 3 weeks and then monthly for a while. Gradually the leash is lengthened with fewer trips to Mayo. Between visits to Mayo, your husband will have labs done frequently at his local oncology clinic with those results sent to Mayo. So he’s always closely monitored.

Where I’m going with this…we opted not to buy a condo, though it was tempting. The need for housing drops off after 5 months. The stay at the Marriott worked out so well in the end. Being so close to the clinic, we could use a wheel chair free of charge from Mayo when needed (early after transplant). Then daily I was able to walk back and forth to appts without having to park the car, worry about inclement weather, and there were a couple of emergencies that had my husband wheeling me back to Station 94 in the middle of the night! That was super convenient then!

So whatever you choose, consider parking, especially now with all the construction. I’m here any time as a sounding board for you!
You are both in the best of hands at Mayo Rochester! And this care continues for life! I’m 6+ years out and if I have issues, I’m still encouraged to contact my team for guidance!
Let me know if you need anything!
I bet you’re missing your golden most of all, right? We always had Golden’s are they’re just the bestest doggos ever. 🥰