AML successful treatment

@justjoan11 Hi Joan, Having to relocate long term to another city for medical treatment is basically an investment in health…but pricey for sure. There are a range of options from staying at the Gift of Life Transplant house, AirBnB, condos, hotels, etc. My husband and I are not ‘group home’ people and opted for the hotel suites at the Marriott.
For others that may read this reply, here is a link to some of the longterm housing in Rochester for cancer patients or transplant patients. https://connect.mayoclinic.org/discussion/transplant-housing-in-rochester/

If you do look into the Marriott Res Inn where we stayed, it’s the location on Center Street. They recently remodeled the suites and have limited indoor parking or the Mayo Ramp right across the street charges less…$12 per day max! Convenient!
For us it was the convenience of their location for being able walk to the clinic daily (via subway system), the full kitchen, two bed/2 bath suite, ability to do laundry in their small, but functional laundromat, grocery stores nearby, etc.. Since my insurance paid for my entire transplant, we didn’t mind footing the bill for the hotel for 4 mo.

Wherever you decide to stay, try to sign a lease. If you stay somewhere for 30 days and use a month to month lease, it saves on the county room tax. Most places are very flexible if you don’t stay the entire length of the lease.
Also, many insurance companies offer a room allowance so be sure to ask your Insurance case worker about that.

You asked about my AML chemo cycles. Mine were actually done in my local cancer center. I had been admitted to the hospital as an emergency. The bone marrow biopsy was sent to Mayo for processing and when the results returned my doctors were able to start chemo. Took a while for me to be stabilized with transfusions and iv antibiotics so I ended up staying in my local hospital for 5 weeks the first time. Then every 28 days returned for another in-patient week of chemo. I had 1 induction round with Cytarabine and Idarubicin, followed by 2 consolidation rounds before my transplant. Between my chemo rounds, I convalesced at home and was fairly healthy. You live 3 hours from Rochester, can you and your husband go home between rounds?
I was in Rochester for the 100 days with the BMT, plus 15 days prior to transplant and another 10+ days after, making it about 4 months total.
If you’re planning on staying in Rochester during the entire AML/BMT adventure, that is a lengthy stent. Where are you staying now? Can you extend the lease? Is it convenient to the clinic?
PS…I sent you a private message yesterday. It should be in your notifications. Lori.

@loribmt I really appreciate your housing feedback. I will definitely look into the Marriott Residence Inn!
How many chemo cycles did you do before a BMT donor was found for you? Did you & hubby stay in Rochester the whole time prior to the transplant? And then you stayed an additional 100 days? Or did you end up staying longer than the 100 days before you went home?
It's our intention to stay here until the BMT, then of course as long as needed after that.
Thank you for all this valuable information.
Xoxo 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. 🥰

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

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?

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, 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?

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?

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

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.