Stem Cell Transplant Decision & Success

Welcome to Connect, @jeffhampton You came to the right place for straight answers about possibly having a SCT. First, a stem cell transplant/bone marrow remains the only potential cure for AML at this time. I had my transplant over 5 years ago and there is no sign of relapse.

We have a growing bone marrow support group here in Connect all celebrating different anniversaries of success. We’ve all gone through the mental rollercoaster ride of making the right decision. For most all of us it was the best decision to go forward with the opportunity for a second chance at life.

To get you started, I’m going to post a couple of links to current discussions where you’ll meet members such as @katgob @deb913 @mary612 @alive @edb1123 @kt2013 @jenmkr63 @jrwilli1 @tkidd51 @dwolden @graycoose and many others who have had a SCT.

~Struggling with decision to move forward with allogenic transplant with @deb913
https://connect.mayoclinic.org/discussion/struggling-with-decision-to-move-forward-with-allogeneic-transplant/
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Husband with AML facing a stem cell transplant (with @mary612)
https://connect.mayoclinic.org/discussion/stem-cell-transplant-decision-success/
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My bone marrow transplant story. Will you share yours? https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/

While the entire process sounds daunting, you’ve already gotten your feet wet with all the induction/consolidation chemo required for the AML. You’d be having one more session with preconditioning chemo prior to the transplant. Depending on where you’re having the procedure done, each clinic has different protocol. Some are inpatient, some outpatient where you recoup off campus for up to 100 days. You’re also required to have a full time caregiver for the initial months. Again, that can change depend on protocol of the hospital.

Read through some of the conversations I posted for you. They might be helpful. I’m happy to answer any questions or concerns you have. What is the timeframe suggested for you?

Welcome to the group! We are not as much fun as a pickle ball team, but I hope you will find the support and encouragement you are seeking as you face this challenging journey.
I was diagnosed with a high risk AML in April, 2013 at the age of 59. My oncologist told me that my best chance for durable remission was induction chemo, high dose chemo, and transplant. My 5 siblings were all tested, but only one sister was a match. It is a daunting treatment to face, but I knew that with the strength of my faith, family, and friends I could do it. And here I am, almost 12 years later and still in remission.
Navigation of the medical system is a challenging, especially if you have a serious illness like leukemia. If you feel like you are not well informed or supported by your team, seek another opinion. The transplant team are the experts that will guide you through the challenges ahead and you need to be onboard 100% with them. Ask questions, knowledge is power.
If you are a person of faith, lean into those values and beliefs. Surround yourself with people who will be present and committed to supporting you (like us)! This experience may test some of your relationships, some people are afraid to get too close, as if this might happen to them.
And if you decide to proceed, take a deep breath, and be all in. You will find strength and resilience you never knew you had.
Please know you will be lifted up in thought and prayer.

Lori,

Thank you very much for the reply and all of the information. I am being treated at Barnes-Jewish Hospital in St. Louis, MO and the recovery will be a combination of the hospital and home for the first 100 days. I will be in the hospital until my blood counts recover then return home with follow appointments to the doctor every week.

I am grateful to have found this group. The most difficult part of leukemia is going through it alone. No matter what, if you have cancer it can get very lonely and it has been difficult for me to find a support group.

Thank you again for the reply and all of the information.

Thank you kt2013. It is great hearing the success stories. AML Inv16 has apparently has very favorable outcomes. I am a very direct person and want direct answers when asking questions about survival rates and things like that but feel like the answers are always vague. Maybe there just aren’t any absolute answers because there are too many variables.

I just want to not feel bad and this past year has been a rough ride. Thankfully I was in very good physical condition before it all started. Can’t imagine what it would be like if a person wasn’t.

Thank you again for the words of encouragemen. God knows that I need them and my faith has certainly been shaken.

Hi! It is a good characteristic for a person to be direct and to seek clear answers, especially about survival statistics. We all want to know what we are dealing with and what the future may hold.
One thing I learned and held dear was that the prognostic/survival statistics they share with you belong to other people….your story hasn’t been written yet. So, I my head, until proven otherwise, my survival was 100%.
And during treatment, I tried hard to stay in the day, letting go of yesterday and not worrying about tomorrow. I am a bit of a control-freak, so this was no easy task. But it has been a good lesson for my life.

I know what you mean about going through this journey alone. When I had my AML/BMT I had no one to talk to about this…no mentors. So my husband and I pretty much flew by the seat of our pants through the entire odyssey.
I had great medical teams back home and at Mayo who were very supportive and informational. But my greatest boost of confidence came at about 1.5 months after my transplant when I met 2 people who gave me hope for the future. I learned the value of having a mentor.

So that’s why I’m here, along with the rest of our BMT posse to offer hope and encouragement to anyone having a transplant or facing a blood cancer. It can be so helpful to someone who has walked the walk.

So don’t hesitate to ask us anything. We’ll give you straight answers! ☺️. Wishing you a Happy New Year!

Jeff.
I am katgob. I was diagnosed with MDS last Oct 2nd. Because i had BRCA2 and Breast Cancer 2 years ago, I was offered a "watch and wait" or a transplant. It only took me a few minutes as i sat there and pondered what the DR said and my health already.
The DR. said MDS is like this, if you had 6 Kathy's, 2-3 of you without treatment may have 5 plus years. The other 2-3 will have AML. Not sure how long it will take but this is how it happens. I said to him, let's do it. He said he would enter me into Be a Match. With genetic mutations in my siblings as well, I needed a donor. There were a number of matches found within a few months and a perfect match was selected in early January. Paperwork needed to be done on our end and over in Europe where my 26-year-old donor came from. In late Feb early march, it was a go. Now they needed to make sure he was available. My biggest concern came knowing i needed a caregiver. I lived alone and none of my 3 siblings could help me. A miracle happened as a good friend put out a text to a bunch of sisters. It was only a few hours later she called me and said i could stay at her house. April 3rd started my conditioning. Home every night after that chemo. Then in the hospital Day 5, by Day 9 i had my transplant.
Lots more but it is written in my story BMT Lori mentioned. I am day 266 after transplant. I feel blessed.

I can’t talk about a success story quite yet because I’m just a few steps ahead of you in the process. I get admitted on Friday, starting the chemo, then my SCT is next week.

I can’t tell from your text if your doctor is just being vague or the fact that you’re looking for definitive answers to all your questions. I can relate to your frustration. I’m a IT Program Manager, which by nature we tend to be control freaks and try to drive towards perfection. I’ve got a great doctor at the Mayo-Phoenix. I’m fortunate enough to be local. It maybe that since he specializes in both CMML and Myeloma, he’s able to answer more of my questions directly.

But even with all of my doctor’s experience, his crystal ball can’t predict how my body will specifically respond to treatment. I had my last meeting with him on Monday to discuss what will happen over the next few weeks after being admitted. We talked about a lot potential symptoms and what to course of treatment would be if they occur. He could tell me with any certainty if I would experience none of them or all of them.

He also couldn’t provide definitive predictions to my long term prognosis. He did share that the in regards to CMML-1, the SCT has a high probability of being a cure. However, with my Smoldering Myeloma, the odds are significantly less, but there is a percentage of people that the SCT does provide a cure. He also informed me what the treatment would be if the SCT wasn’t a cure for the Smoldering Myeloma.

As an IT Program Manager I am always dealing with issues and my job is to always find a path to achieve the desired results. It’s hard for me to stop doing that in dealing with all the doctors, nurses, and hospital administrators. My decision was to proceed with the SCT, even with all the ugly side effects and symptoms, the outcome was better than doing nothing. The odds are in my favor for a successful outcome and I’m willing to endure the process to achieve success. If I fall short of that goal, then I’ll address those issues when they’re known.

I try to keep a positive attitude and don’t worry about potential issues outside of my span of control until they become real. Then I’ll address them, with the medical team to determine the best path forward.

I can’t speak to the knowledge, experience, and people skills of your doctor. If you aren’t happy, I would seek out a second opinion from one of the major cancer centers. Because I’ve moved this past year, I’ve been seen at three different hospitals. The first one was ok, the second one I wouldn’t recommend, and the third one has been pretty good. That one was the Mayo Clinic-Phoenix. Like I mentioned, I’m fortunate to live locally to it. Only you can decide if it’s worth the expense to travel to get a second opinion.

I also fully agree with all of @kt2013’s advice as well. I wish you good luck with your journey.

rv10,

I wish you luck and will be pulling for your success. Thank you very much for your kind words and advice. I really like my doctor and feel she has guided me well so far, I just wish the outcomes were more predictable. I'm sure I feel the answers are vague because each SCT has its own set of circumstances based on each individual and a myriad of variables.

Please keep in touch and let me know how you are doing!

katgob,
Thank you very much for sharing. You are an inspiration to me. I am very lucky to have my wife, two of four daughters, and one sister who can share being my caretaker. I haven't read your entire story yet but I will.

Again, thank you for sharing. I look forward to learning more about your journey and, hopefully, supporting you as well.