1. < Bone Marrow Transplant (BMT) & CAR-T Cell Therapy
Mentor

Snapshots of hope: Life on the other side of transplant.

Posted by Lori, Volunteer Mentor @loribmt, Feb 24, 2022

My husband snapped a photo of me walking on a beach this morning. I was running through the surf, picking up shells, smiling and feeling on top of the world with unabashed joy for being alive and healthy. So what?
Well, it’s a photo that wouldn’t exist if I hadn’t had a bone marrow transplant. It’s a snapshot of hope!

Three years ago today I was diagnosed with Acute Myeloid Leukemia, an aggressive blood cancer and fighting for my life. Prospects of ever being able to walk a beach again seemed beyond reach.
With a lot of chemo, I achieved remission, but my only hope for a future would be a bone marrow/stem cell transplant as the cancer would likely return. Let’s just say, that procedure isn’t a walk on the beach but it gave me a second chance at life and well worth the arduous journey it took to get here!

Along this journey, I’ve been able to help inspire and give hope to others who have faced my same battle. I’m alive, surviving and thriving because of a gift of life from my anonymous donor.

When facing a transplant, whether it’s stem cells, or a solid organ, it can be a daunting prospect. I think a gift we can give, as transplant survivors, is to share our positive transplant stories with anyone who is about to undergo the procedure or is in need of reassurance in their recovery.

Show me your Snapshot of hope! What photo do you have that wouldn’t exist without your transplant?

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 20 6:35am
In reply to @dwolden "Well after speaking to a clinic admin we got a call from an RN who told..." + (show)
@dwolden

Well after speaking to a clinic admin we got a call from an RN who told us doctor is on vacation. She suggested we schedule a video appointment with the doctor to get our questions answered which we will of course be billed for. We agreed to do that since it seems to be the only way we will learn what the care plan is. Scheduling called immediately and the first such appointment is two weeks out. My husband and I are both very disappointed and worried.

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@dwolden, thank goodness you got the call and things are moving forward in a manner of speaking. But I hear you that you are worried and disappointed. As others have mentioned, this does appear to be out of character for Mayo Clinic, especially this department.

I encourage you to contact the Office of Patient Experience to share this unfolding of events and communication breakdown. I know they would want to hear from you. Here is the contact information:
Mayo Clinic Office of Patient Experience
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu

REPLY
dwolden | @dwolden | Jun 20 7:55am
In reply to @colleenyoung "@dwolden, I want to follow up to make sure you got the call that you were..." + (show)
@colleenyoung

@dwolden, I want to follow up to make sure you got the call that you were waiting for from your doctor's husband and that things have been resolved. Have you been contacted in the meantime?

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Colleen within moments of the message I sent you we got a message from the transplant team. Pending the donor’s availability we are scheduled to begin the process on July 22!!! We are thrilled and grateful although mystified how this is happening without doctor’s help?
SO THANKFUL.

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1 reply
myfablife | @myfablife | Jun 20 8:00am
In reply to @marylou329 "I am kind of in the same boat as your husband, but my doctors at Dana..." + (show)
@marylou329

I am kind of in the same boat as your husband, but my doctors at Dana Farber always respond to my portal messages. I was diagnosed January 2024. I started Chemo locally in March and was told they have found me a perfect match. I had another Cycle of chemo in April followed by a bone marrow bx in May. Bx came back with blast elevated. I then started cycle 3 with IV Chemo and Venetoclax pills. I have an appointment early July for another Bone Marrow Bx. If blast are down or not I will remain on the IV Chemo and Ventoclax til I get to Transplant. What I thought would be happening in May looks like it won't be until September. I have a special needs daughter at home and
need to make arrangements, which I have in place just waiting for the go ahead. It's diffentely a roller coaster ride and makes it hard to plan. I just started to live my life and hope I get at least a week notice to get my belongings together. I live 2 hours away and will be in Boston for 1 to 2 months.
Hang in there it's not an easy ride. I wish you both the best of luck.

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Hi What type AML do you have, I was hoping for stencil TP but have been told no..

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 20 8:10am
In reply to @dwolden "Colleen within moments of the message I sent you we got a message from the transplant..." + (show)
@dwolden

Colleen within moments of the message I sent you we got a message from the transplant team. Pending the donor’s availability we are scheduled to begin the process on July 22!!! We are thrilled and grateful although mystified how this is happening without doctor’s help?
SO THANKFUL.

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Fantastic!! I, and everyone else here in the group, look forward to supporting you and your husband on this journey. As @loribmt says, you will be "Mayo-naised". See her spotlight here for clarity of the definition 🙂
- I’ll take an order of Hope with a side of Mayo, please! - Meet @loribmt https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/ill-take-an-order-of-hope-with-a-side-of-mayo-please/

REPLY
marylou329 | @marylou329 | Jun 20 9:09am
In reply to @myfablife "Hi What type AML do you have, I was hoping for stencil TP but have been..." + (show)
@myfablife

Hi What type AML do you have, I was hoping for stencil TP but have been told no..

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I have MDS. Intermediate high risk because of mutations.

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myfablife | @myfablife | Jun 20 2:21pm

I am sorry to hear this for you, I was dx with AML with a mutation also. I was praying I could get stem cell TP but denied by 2 facilities that would have been my best chance, now it seems I will be on chemo/pill and pray I stay in remission. I did have a LTP 3.5 yrs. ago and have ckd also I am 63yo I am in excellent health but they feel NO. Extremely discouraging.
I pray and pray for you to get your TP.😊😊

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Jun 20 3:39pm
In reply to @myfablife "I am sorry to hear this for you, I was dx with AML with a mutation..." + (show)
@myfablife

I am sorry to hear this for you, I was dx with AML with a mutation also. I was praying I could get stem cell TP but denied by 2 facilities that would have been my best chance, now it seems I will be on chemo/pill and pray I stay in remission. I did have a LTP 3.5 yrs. ago and have ckd also I am 63yo I am in excellent health but they feel NO. Extremely discouraging.
I pray and pray for you to get your TP.😊😊

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Hi @myfablife. Hearing a no-go for stem cell transplant had to be very frustrating. I’m wondering if your denial for the transplant is because of the liver transplant and your chronic kidney disease? The pretreatment chemo and the transplant itself can impact the liver and kidneys…both with toxicity levels and the potential for graft vs host disease.

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myfablife | @myfablife | Jun 20 4:16pm

Yes unfortunately that was it. Very very disappointed. I just pray that I will be healed or the regiment they have me on will keep me in remission bc I have so much more living to do. It’s my fablife 😊

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Jun 21 9:57am
In reply to @myfablife "Yes unfortunately that was it. Very very disappointed. I just pray that I will be healed..." + (show)
@myfablife

Yes unfortunately that was it. Very very disappointed. I just pray that I will be healed or the regiment they have me on will keep me in remission bc I have so much more living to do. It’s my fablife 😊

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It’s understandable to be disappointed. However, having had this transplant myself, I know the demand the side effects of the chemo and reaction to the foreign stem cells can put on our organs. So, from my perspective, your doctors making the decision to keep you on your current drug therapy as opposed to undergoing a Allogenic stem cell transplant is sound. By doing so, they are avoiding any potential serious complications that might not have you not enjoying your fablife as much as you are right now. Does that make sense?

REPLY
myfablife | @myfablife | Jun 21 11:30am

Hi Lori, yes it does make sense now that I have kinda gotten over the disappointment. I just want to be healthy and back to my normal routine, I am still walking not 6miles like I use to, working in my yard but I tier so easily. I was so use to go go go never slowed down so I think that frustrates me.
I am so HAPPY for you😊🌈🌼

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