AML successful treatment

Posted by lindagi @lindagi, Jan 6 8:19am

Happy New Year! I want to share a happy treatment update for my wonderful response to Venetoclax and Dacogen (similar to Vidaza) for treatment of my AML. When I was diagnosed 3 years ago I was considered too old for transplant at age 78 here at the Mayo Clinic. I went into remission after my first cycle of treatment and have now stayed in remission for 3 years. My treatment has been ongoing and my team here has tweaked my routine several times to reduce side effects. Currently I am on a 5 week cycle of Venetoclax for 7 days at the same time I get Dacogen infusions for 3 days (recently reduced from 5 days). I will continue on some treatment routine as long as it is working. In the meantime I am enjoying a full life with family and friends although still taking precautions (weekly blood draws, avoiding folks with colds, etc.) .
I have learned a great deal throughout this period, including the variability of patient responses that can occur due to so many factors (genetics, other health conditions, etc.). I have also learned that there is at least one other patient here who is closing in on 5 years of remission with a similar routine! I am sharing my story to encourage you and wish all of you good outcomes as you face your treatment challenges.
Linda

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

justjoan11 | @justjoan11 | 5 days ago

In reply to @loribmt "@justjoan11 Hi Joan, It’s too bad we hadn’t talked earlier or I’d have popped into visit..." + (show)

@loribmt

@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. 🥰

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@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

Lori, Volunteer Mentor | @loribmt | 4 days ago

In reply to @justjoan11 "@loribmt I really appreciate your housing feedback. I will definitely look into the Marriott Residence Inn!..." + (show)

@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.

justjoan11 | @justjoan11 | 1 day ago

Thank you thank you Lori! Would you possibly consider giving me your private email? If that's not an appropriate ask, I apologize. I want to ask & share specific things related to my husband's situation & feel uncomfortable posting so much publicly. Thank you Joan

Lori, Volunteer Mentor | @loribmt | 17 hours ago

In reply to @justjoan11 "Thank you thank you Lori! Would you possibly consider giving me your private email? If that's..." + (show)

@justjoan11 You can contact me privately by clicking on my picture. It will take you to my page, with the little envelop link under that says, Send Private Message. Those are all private messages and can’t be read by anyone else! It comes directly to me.

I sent you a message the other day, the same way. I’m not sure you’ve seen it. If you’re accessing Connect on your phone, look at the top. There will be a little icon of a person in the upper right corner. Click that and it will open to a menu that shows notifications and messages (along with your profile, settings and the help center). My message should be waiting for you in there.

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