Preparing for consultation & BMT transplant

Hi @mnhygiene1983 and welcome to Connect! Congratulations on your autologous stem cell transplant! Thank you for sharing your very honest experience with this procedure. I hope it brings @itlooksunny some peace of mind for her husband’s similar stem cell transplant coming up!
Being able to use one’s own stem cells is less traumatic for the body and recovery is usually much faster than with having to use donor cells. I think your information will be really encouraging for others about have a similar transplant.
Wishing you continued success and speedy recovery. Though the body is going to take its own sweet time so no pushing! ☺️ Rest when you need it…your body will tell you!

How far did you have to travel from your hometown to be able to stay at Mayo for the procedure?

Hi @mnhygiene1983 and welcome to Connect! Congratulations on your autologous stem cell transplant! Thank you for sharing your very honest experience with this procedure. I hope it brings @itlooksunny some peace of mind for her husband’s similar stem cell transplant coming up!
Being able to use one’s own stem cells is less traumatic for the body and recovery is usually much faster than with having to use donor cells. I think your information will be really encouraging for others about have a similar transplant.
Wishing you continued success and speedy recovery. Though the body is going to take its own sweet time so no pushing! ☺️ Rest when you need it…your body will tell you!

How far did you have to travel from your hometown to be able to stay at Mayo for the procedure?

Thank you for such a lovely and gracious reply. I’m here to offer support anytime, @anitasharma. When my husband and I went through this process there was no one we could speak with who had ‘walked the walk’. My BMT team was outstanding with offering information and encouragement. But it’s not the same as being able to speak to someone with firsthand knowledge.
That’s why I’m here, to offer support and hope to others going through the BMT process. It’s been a mission for me to pay it forward since I’ve been given a 2nd chance at life. It’s truly my honor to be able to help you and your husband. There are quite a few of us members in the group here and we’re all lifelines when you need us. ☺️
So, please, contact me with any questions, concerns or use me as a sounding board.
Wishing only the best for your husband, you and your family! You’re all going to get through this and be stronger on the other side! One thing I learned in the process is that we truly don’t know how strong we can be until strong is the only option. ☺️
How old are your children? How are they handling their daddy’s illness?

My husband is plus Day 26 after transplant. He also had MDS. Your posting was so reassuring as we continue to navigate this journey. Thank you for posting.

My husband is being treated at Mayo in Rochester, MN. Should we be proactive and shave his head instead of waiting for hair to fall out? GVHD I dont know what that stands for? My husband, Dale, is 68. Oh by the way my name is Bev!

Hi @anitasharma. If I remember correctly from our previous conversations, your husband has AML, or acute myeloid leukemia. Depending on the particular mutations driving that disease, AML can be a little challenging to keep in remission.
Every day, we all have cancer cells circulating in our body. But our immune systems snuff them out. AML, can have some particular mutations, such as FLT3 and others, that essentially trick the immune system into no longer recognizing these cells. So the cancer cells are free to proliferate merrily along until they crowd out healthy cells, as in the case of your husband with 74% blast cells.

Here’s the tricky part. Some of these cells can actually go ‘dormant’ during chemotherapy and basically become immune to the chemo. This allows the cells to hide out in the body, only to resurface later. Then when they reemerge (relapse), the old immune system, again, doesn’t recognize them and the cancer cells are free to start proliferating out of control. Another thing that happens- over time, chemo can become ineffective with each subsequent round.

This is where an Allogenic bone marrow transplant (donor cells) comes into play. The goal is, with the transplantation of someone else’s immune system via stem cells, this new immune system will now recognize the cancer cells and snuff them out!

As for your husband’s AML, only his doctors will be able to tell you if he will require a transplant or not. There are some types of AML where a transplant isn’t necessary because the risk of relapse is low. Then there are subtypes, as I mentioned, with mutations where the risk of relapse is high. A bone marrow transplant remains the only potential cure for AML at this time.
I was just in for my 6 year post AML/transplant followup with my local hematologist oncologist yesterday who treated me for the AML. We had a long discussion about current treatments, research and progress in treating AML. While there are new meds on the market since I had AML/transplant journey, there is nothing yet to replace the BMT for AML. I’ve been cancer free for almost 6 years. The transplant journey wasn’t easy. But I’d do it again, in a heart beat, to have this second chance at life that I’ve been enjoying.

To answer your other question, from what I’ve learned, technically, there is no staging of AML. But the severity of the disease can be measured by the amount of blasts in the peripheral blood. Your husband had 74% at the time of admission, I had 85%. Both of our numbers were incredibly high when you consider we only had, respectively, 26% and 15% of any barely usable blood left. That’s as serious as it gets. He’s now down to .11% which is good but still showing some residual cells.

I also had several lumbar punctures. This is a fairly easy procedure/painless that allows the spinal fluid to be analyzed to see if there are any leukemic cells present, if the disease has crossed the blood/brain barrier.

My heart goes out to you because I know you’re so far from home and family. And being the caregiver for this AML journey with your husband is so difficult. When I was going through this I watched my husband age. As caregivers you feel so helpless as you watch your loved one suffer. You’re also carrying the responsibilities of decision making, household responsibilities and anything that used to be in your husband’s hands. You’re doing an admirable job! So please don’t lose faith that this will all work out. It takes time. Your husband has a great medical team who are being very diligent and vigilant in his care.

Have you asked his doctors is the BMT is still necessary?

Hey Lori ....I would like to thanks to all the Strong People here for your Cancer Journey !
So, My husband diagnosed with ALL (Acute Lymphoblastic Leukemia) and Yes Doctors Suggested for BMT within 2 months . My Son could be Best match as a Donor .Well before talking to you all my mind was very puzzled ,but m getting relaxed as I got to know so many things here which is making me prepare in advance for my husband BMT in future. Sometimes its really tough to manage job, home, kids at home, hospital appointments and off course financial battles with mentally physically so exhausted .We all should be thankful to God that we are blessed with so many things in life that these CHALLENGES are just temporary and comes into life to make us more Strong. We are unstoppable and one day we all win the Game .
Stay blessed beautiful people
Thanks again !

I do love your Spirit by answering our questions in such a lovely way out. Yes My Son has been tested last week ,waiting for the reports . Having a meeting this weekend with Bone Marrow Transplant Specialist . A little nervous though what's going to be happened next. Still Hopeful for better things . I can understand this Transplant Journey is not at all easy ,seeing your loved one in pain feeling helpless many side effects so many challenges ups and down but as you said there is hope after transplant for a return to a fairly normal lifestyle. Is there anything I should ask Doctor before Transplant????
We decided to call my In laws from India as a helping hand and most important an emotional Support for my husband . Talking to you gives me hope and keeps my worries away.
Stay blessed you all . keep spreading awareness and love with your good thoughts.