How long from diagnosis of AML typically comes the BMT?

Thank you for responding to me. I don't mind losing some weight I just do not want to gain weight! This week I have been doing consolidation chemo and I have been retaining water it is not a fun thing. I so hate the scale to go up. of course I have been on a diet now for close to 60 years.. since I was 10 I think.... So glad you are back to work and doing well. Prayers for your continued health. I cannot wait to get through this.

Lori, my husband is my rock! He has been driving me everywhere. I cannot wait to get rid of the 'chemo fog' so I can drive again. Thank you for the information on weight loss. it is something I do have about 45 lbs to lose ... right now gaining water weight which is not fun!

I just returned from Mayo from having a week of Consolidation Chemo my tummy is black n blue and hurts but I know this will keep the AML in remission. Now I am working on finding a place to live near the Mayo for four months. The first month will be for my husband to have a nice place to rest while I am in the hospital. This journey is pretty intense if you ask me!

Thank you so very much for all the help you can give me! Susan

Hi Susan! If you could have heard my ‘snort/giggle’ when I read your line, “This journey is pretty intense if you ask me!” You’d have laughed out loud! Yes’m this will be the ride of your life but when you get past the part of being Super Woman brandishing the enemy with your shiny wrist cuffs, you’re going to feel invincible! So hang in there!

I’m curious about being in the hosptial for a month after transplant. I wonder if Mayo Phoenix has a different protocol than Rochester? We were outpatients immediately after transplant and lived off-campus in whatever lodging we chose for our lengthy stay.
I’m not familiar with the Phoenix area but maybe @alive or other Mayo-Phoenix members would have some ideas for your stay.
Do you have any other transplant related questions I can help you with?

Well, I am sure I will know by the end of July!! I will let you know what my experience is. Right now we found an amazing Condo that we will rent for the four months total that we will be in Phoenix. We will look at it on Monday. Looking for a place to stay is so tough. I do not want more furniture, Kitchen ware, etc. I want a reasonably priced place to stay. We believe we found one where our children can visit and help with my care to give my husband a rest every so often. I love him dearly, but knowing what a care provider goes through, he needs a rest.

The condo sounds the ideal for you and your husband for this adventure. That will be a big hurdle out of the way. I understand exactly how you feel about your husband. My husband and I were married 45 years at the time (just celebrated our 50th anniversary) and he was a solid rock for me through all of this…still is. Though the demand is less now, but I watched him age dramatically that first year. So having a place where he can have a bit of normalcy is perfect. It eases your mind too…though let me tell you, this is the one time you can be a little selfish to completely focus on you. Not something mom’s get to do often.

I have some information you might find helpful for what to pack for long term stays away from home. You’ll also have classes for nutrition and safety given by your transplant team. Avoiding infection is the most critical factor so sanitation in the condo will be a must. So there are guidelines for patient safety that will be reviewed with both of you. To give you a head start, I’m posting a few links for you.

This link to Mayo Clinic’s Caregiver guide is fairly comprehensive as to the needs of the patient for safety with food, living conditions and guidelines for getting through some of the earlier challenges.

When you click on the link, check the headings and the menu listings. You’ll see:
Welcome. Caregiver support, Transplant Journey and More

When you click on More, you’ll see specific details for the Phoenix Campus!
Also, make sure when you look to the “Transplant Journey” that you scroll down to Allogenic Transplant segment.

https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/support/#ch-tab-navigation
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Another great guide for the Post Allogenic patient care is from Memorial Sloan Kettering. https://www.mskcc.org/pdf/cancer-care/patient-education/leaving-hospital-after-your-allogeneic-transplant

This link has some repetitive information but it also has detailed lists of what to pack for long term. I posted this a couple months ago to a newer member who just went through her Allo transplant, @katgob. She’s more than halfway past the critical 100 day point!

Let me know if there’s anything else I can do for you.

Lori, you are such an amazing person to provide me with all this information as I sit here feeling so tired from last week's Cancer Treatment and the cancer tablets. I have decided I have to get up and walk at least 2K steps a day no matter what and over the next couple of weeks without the Cancer Treatment even make it up to 3K steps. I know I can do it - it's just tough to do. I used to walk 3 to 5 miles a day! Ridiculous this leukemia! Ridiculous! taking my love of life and sitting me on my butt! I am responsible for me!!!

You’re right, Susan, you have the absolute best attitude about this disease. It is ridiculous! Leukemia doesn’t play fair. I know the feeling of being clipped off at the knees just when I thought I was going to be cruising through this aging business with no catastrophic illness. I’d done everything right my entire adult life to remain healthy; Ate healthy foods, exercised, walked 7-10miles daily, occasional glass of wine, no smoking, yada yada… Then boom, within 3 weeks I went from super healthy to inches away from pushing up daisies from the underside. I could feel my life slipping away! It wasn’t fair because I was certainly not done living!

Thank heavens for chemo! Yes, I said it! I was so grateful for this treatment because months of intense chemo and bmt returned my life to me! It wasn’t an easy journey by any means. But for me, there was a huge reward on the other side.

Your attitude towards this disease will help you get through the treatments and also help you recover faster. My bmt team repeatedly tell me much of my success was because of my previous healthy life style and continuing walking during treatment. I also followed their directives to the letter which is crucial. There are protocols for a reason.

Just so know you and don’t get too frustrated about it, there will be days when you physically won’t feel up to walking any further than to the bathroom or kitchen. Lack of red blood cells will have your oxygen level dropping after chemo. But don’t lose faith in the process. Our bodies are designed for healing. So with time you’ll recover, regaining strength and stamina. It’s that spirit of endurance that keeps you going.

The thought of the transplant was daunting. My husband and I knew of no one who had gone through the process of transplant, relocating to a new city for 4 months, or what to expect. It would have helped immensely to have been able to talk with someone who had walked the walk.
That’s why I’m here in Connect. I’m trying to make sure anyone facing AML or any form of leukemia, or requiring a bone marrow/stem cell transplant has a life line, a guide through the unknowns and to let them know there is hope for a future beyond a diagnosis of leukemia. ☺️

I thank you for your words! We got home on Monday and I have walked the past two days with my husband's help! He says, "Do you want to walk" My answer is always yes! We are walking inside Home Depot and Walmart early in the morning so that I can get at least 2K steps a day.... I read somewhere here that it was a requirement to walk out of the hospital with some strength! Not sure where I read it but I believe being strong is the only way to get through this disease!! I may have listened to someone's bone marrow transplant journey on YouTube! Thank you again Lori for your words! They are giving me hope and encouragement.

Quite honestly, Susan, it was demoralizing for a few weeks when I was reduced to riding in a wheel chair for my ‘short walks’ to the clinic daily. I remember not even being able to stand up at the desk to grab the sign-in clip board for a couple days. But that then became a stamina goal…one of many including weaning off the chair rides. I’d ride for a ways, then push it for support until I could waddle with just holding my arm and then, fierce independence! 😅 I kept the chair in my hotel suite ‘just in case’ for another month and then had a Rocky moment of returning the chair and running up the flight of stairs in the main Gonda building without getting winded!
I know you’re not familiar with that building but for someone who was bedridden and weak at the start of the adventure, it was quite a feat! So you may have some weak moments ahead too but just keep persevering and they’ll be behind you in no time! Here are my Rocky Balboa moments in photos. 😉