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

My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

Posted by Lori, Volunteer Mentor @loribmt, Feb 14, 2021

The past two years have been a storied journey of facing Acute Myeloid Leukemia and a subsequent bone marrow transplant. Being in a high risk category for relapse for AML, a transplant was necessary. Simply put, it would provide a completely new immune system to fend off any remaining AML cells lurking about in my body, after my original factory installed version had become defective in recognizing them. My husband and I shared a collective sigh of relief with the news that my latest bone marrow biopsy, at 19 months post transplant, showed no AML or the mutation which caused it. My new immune system is working!
While celebrating the results with my husband and a pizza, it occurred to me how far I’ve come and how life has changed in the past two years since the onset of AML and the transplant. There have been some challenging transitions but none insurmountable. Of course, life as a genetically modified organism, with two sets of DNA and a new blood type, can have its turf wars with a few GvHD issues, adaptations to medications and such. But I’m incredibly happy to have a second chance with this generous gift of life from an anonymous donor, and through the medical expertise of my amazing BMT-team at Mayo-Rochester. Hopefully I can meet my donor someday to thank him in person. I did send him a card right after the transplant giving him my “undying” gratitude!
We’ve all been given a gift of life. I’d love to hear your story. Lori

What diagnosis brought you to a BMT?

How has it impacted your life and that of your caregiver?

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

Mentor
Lori, Volunteer Mentor | @loribmt | Apr 5 10:07am
In reply to @sally66 "Hi Lori, My transplant was on March 6 and I am at day +29 post transplant...." + (show)
@sally66

Hi Lori,
My transplant was on March 6 and I am at day +29 post transplant. I thought I would be feeling better by now. Maybe I am not as patient as I thought. We are at GOL right now which has been fine. I'm not a fan of the shared kitchen/smells and all the limitations. Contemplating a move. Thx for your response.
Sally

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Oh my gosh, Sally, I missed the date! March 6th! I try keep notes to make sure I don’t miss out on anyone’s big day. Quickly looking back, thankfully @katgob was ‘Johnny on the spot’ to congratulate you! That’s what I love about this forum! We are such a cohesive team of support!

At Day+30 you’re still very early in the recovery. The first month is usually the roughest, so that’s out of the way! Now it’s a slow, steady, daily progression to gaining strength and stamina. Sorry to say, there’s no rushing this part! LOL. So this will be a test of your patience. It was for me too. I found if I pushed too hard, then I’d have a day or so of feeling exhausted. It’s really important to listen to your body. If it calls for rest, do it! This is your moment to be queen for the day…for the next several months. 😅

As for moving from GOL. I know it’s a wonderful facility but I’m with you. My husband and I knew that the shared community life wouldn’t be for us so that’s why we opted for the hotel suite.

Here is a link to another discussion that lists long term options for lodging:
https://connect.mayoclinic.org/comment/1242265/
Please accept my apology for not checking in sooner, Sally. Let me know where you land if you change locations. And please, feel free to share your BMT transplant story here with us.
Are you feeling stronger daily? Any nausea?

REPLY
katgob | @katgob | Apr 6 7:39pm

Lori,

I busy day it was Friday!! At 7:30am i started in one building for my CT chest scan. Across campus, i had to drive due to time, for my blood test. From blood test down the hall into the previous building most work was in to the BMB office. I love this newer part in the hospital as it is near the "makeover department". At this point i thought i would be late. Nope. All on time!!! My BMB surprisingly was not by my favorite PA. She had done it 3 times. I had not remembered she is off Fridays. This time I got another PA! His name was Rigoberto!! I asked him when he came in the room if he was completing my procedure. He said yes. I said ok. As long as you have done this a few times. Of course he has. His methos was interesting. He used the left side of my hip. My other 4 were on the right. He said he could see the scar map. Not bad he said just interesting. As he covered this with me as he went, he talked though the lidocaine and the other item he used to clean the area. As he was going to insert the 1st needle, he let me know when he was moving the needle in to get the sample. Then moving in with the other needle to get in the bone. I did not feel much beyond the pressure he talked about which was like my experience with the other 4. Because i am in the research study he said they had prior phone calls reminding them they needed extra product for the 1-year mark for the research.
Done with that i headed over to the medical diagnostic. I had my echo then about 20 minutes later my pulmonary test in the "box". The Dexa scan was in the new Hope Plaza building. Out of all these, By the time i talked to the NP, I was told my heart is good, the pulmonary fellow, who completed the test said my breath pattern is very good and to him the results are very good. The CT scan results show if anything may be brewing.
I got a break then to go get my French fried from the cafe. Done with that and a couple thousand steps to get there and back, I had my drs visit. I saw Hannah the NP. She looked right away and said you look great!!!! You look like you have had nothing wrong, ever!!! My cholesterol HDL is a bit height. She said do not worry right now. I have not had those numbers checked since my cancer journey started in 2021 July. All my other blood numbers are right in the middle. One a bit high, but no worries to them. She said my Iron is often 100, 200, 500, 00 for transplant patients. She said yours is 88!!
My next appt is later in the day on the Bone Marrow transplant reunion day on May2nd. I also will be contacting the primary Dr's office i went to when i first found my breast tumor. I checked with my friend who housed me for my transplant and that dr is still in business, still in my insurance plan and the PA Christine is still there. Cance care and bone marrow care at City of Hope and Cedars. Primary Dr for the generic visits. I am done with "active" care. Follow-up is where i am at.
Almost, waiting for the next results and the BMB chimerism test results in a week or 2.
Back to work in person Tuesday. As long as my note comes from the doctor. We have four days to finish packing our office. I expect most has been done by the students, except my area.

REPLY
2 replies
mary612 | @mary612 | Apr 7 8:31am
In reply to @katgob "Lori, I busy day it was Friday!! At 7:30am i started in one building for my..." + (show)
@katgob

Lori,

I busy day it was Friday!! At 7:30am i started in one building for my CT chest scan. Across campus, i had to drive due to time, for my blood test. From blood test down the hall into the previous building most work was in to the BMB office. I love this newer part in the hospital as it is near the "makeover department". At this point i thought i would be late. Nope. All on time!!! My BMB surprisingly was not by my favorite PA. She had done it 3 times. I had not remembered she is off Fridays. This time I got another PA! His name was Rigoberto!! I asked him when he came in the room if he was completing my procedure. He said yes. I said ok. As long as you have done this a few times. Of course he has. His methos was interesting. He used the left side of my hip. My other 4 were on the right. He said he could see the scar map. Not bad he said just interesting. As he covered this with me as he went, he talked though the lidocaine and the other item he used to clean the area. As he was going to insert the 1st needle, he let me know when he was moving the needle in to get the sample. Then moving in with the other needle to get in the bone. I did not feel much beyond the pressure he talked about which was like my experience with the other 4. Because i am in the research study he said they had prior phone calls reminding them they needed extra product for the 1-year mark for the research.
Done with that i headed over to the medical diagnostic. I had my echo then about 20 minutes later my pulmonary test in the "box". The Dexa scan was in the new Hope Plaza building. Out of all these, By the time i talked to the NP, I was told my heart is good, the pulmonary fellow, who completed the test said my breath pattern is very good and to him the results are very good. The CT scan results show if anything may be brewing.
I got a break then to go get my French fried from the cafe. Done with that and a couple thousand steps to get there and back, I had my drs visit. I saw Hannah the NP. She looked right away and said you look great!!!! You look like you have had nothing wrong, ever!!! My cholesterol HDL is a bit height. She said do not worry right now. I have not had those numbers checked since my cancer journey started in 2021 July. All my other blood numbers are right in the middle. One a bit high, but no worries to them. She said my Iron is often 100, 200, 500, 00 for transplant patients. She said yours is 88!!
My next appt is later in the day on the Bone Marrow transplant reunion day on May2nd. I also will be contacting the primary Dr's office i went to when i first found my breast tumor. I checked with my friend who housed me for my transplant and that dr is still in business, still in my insurance plan and the PA Christine is still there. Cance care and bone marrow care at City of Hope and Cedars. Primary Dr for the generic visits. I am done with "active" care. Follow-up is where i am at.
Almost, waiting for the next results and the BMB chimerism test results in a week or 2.
Back to work in person Tuesday. As long as my note comes from the doctor. We have four days to finish packing our office. I expect most has been done by the students, except my area.

Jump to this post

Happy Cellabration and Re-birth day this Wednesday!!!! Yay! Congratulations and thrilled to hear your wonderful health update! May God continue to bless you, one day at a time, feeling good and grateful!

💗
Mary

REPLY
Mentor
Lori, Volunteer Mentor | @loribmt | Apr 7 10:02am
In reply to @katgob "Lori, I busy day it was Friday!! At 7:30am i started in one building for my..." + (show)
@katgob

Lori,

I busy day it was Friday!! At 7:30am i started in one building for my CT chest scan. Across campus, i had to drive due to time, for my blood test. From blood test down the hall into the previous building most work was in to the BMB office. I love this newer part in the hospital as it is near the "makeover department". At this point i thought i would be late. Nope. All on time!!! My BMB surprisingly was not by my favorite PA. She had done it 3 times. I had not remembered she is off Fridays. This time I got another PA! His name was Rigoberto!! I asked him when he came in the room if he was completing my procedure. He said yes. I said ok. As long as you have done this a few times. Of course he has. His methos was interesting. He used the left side of my hip. My other 4 were on the right. He said he could see the scar map. Not bad he said just interesting. As he covered this with me as he went, he talked though the lidocaine and the other item he used to clean the area. As he was going to insert the 1st needle, he let me know when he was moving the needle in to get the sample. Then moving in with the other needle to get in the bone. I did not feel much beyond the pressure he talked about which was like my experience with the other 4. Because i am in the research study he said they had prior phone calls reminding them they needed extra product for the 1-year mark for the research.
Done with that i headed over to the medical diagnostic. I had my echo then about 20 minutes later my pulmonary test in the "box". The Dexa scan was in the new Hope Plaza building. Out of all these, By the time i talked to the NP, I was told my heart is good, the pulmonary fellow, who completed the test said my breath pattern is very good and to him the results are very good. The CT scan results show if anything may be brewing.
I got a break then to go get my French fried from the cafe. Done with that and a couple thousand steps to get there and back, I had my drs visit. I saw Hannah the NP. She looked right away and said you look great!!!! You look like you have had nothing wrong, ever!!! My cholesterol HDL is a bit height. She said do not worry right now. I have not had those numbers checked since my cancer journey started in 2021 July. All my other blood numbers are right in the middle. One a bit high, but no worries to them. She said my Iron is often 100, 200, 500, 00 for transplant patients. She said yours is 88!!
My next appt is later in the day on the Bone Marrow transplant reunion day on May2nd. I also will be contacting the primary Dr's office i went to when i first found my breast tumor. I checked with my friend who housed me for my transplant and that dr is still in business, still in my insurance plan and the PA Christine is still there. Cance care and bone marrow care at City of Hope and Cedars. Primary Dr for the generic visits. I am done with "active" care. Follow-up is where i am at.
Almost, waiting for the next results and the BMB chimerism test results in a week or 2.
Back to work in person Tuesday. As long as my note comes from the doctor. We have four days to finish packing our office. I expect most has been done by the students, except my area.

Jump to this post

Hey Kat! Isn’t that first year followup appointment a bit mind blowing? It’s a time of for reflection of achievement! You’ve come so far in this past year, met so many new people, gained a new vocabulary and added yet another major experience to your book of life!

At the time of transplant, it’s difficult to imagine life at the post 1 year+ point. So much transpires over the first weeks and months. After that it’s usually a slow, steady progression back to normal, or new normal. I know some people balk at the term, ‘new normal’. But really, we continue to grow and change over our lives anyway.

You’ve been the poster child for how a BMT should go right from the beginning, Kat. You worked like the dickens to make this all possible with finding a caregiver and the logistics behind being absent from home for several months.
I recall telling you last year, that someday you’ll be the guiding light for others going through this challenging time…and you are. As mentor for this group, I’ve come to rely on you as a fellow cheer leader and beacon of hope for others with your positivity.

Going back to work tomorrow?! Kat, wow, that’s a giant leap for you. I know you’re ready and it will feel liberating!! Promise I won’t be a mother hen but wanted to plant the seed of “listen to your body”…rest if you need to! Wow, tomorrow will be like the first day of the rest of your life! 😁

Echoing @mary612 in wishing you, Happy Cell-aversary and Re-birth day this Wednesday!! 💕

REPLY
Mentor
Lori, Volunteer Mentor | @loribmt | Apr 9 9:47am

@katgob! Happy 1st Re-Birthday, my friend! 💙💚 It’s a milestone!

REPLY
katgob | @katgob | Apr 10 1:52pm

Lori,

Thank you. I have worked two 10-hour days as our office is being packed and my supervisor is at an East Coast Conference, so i needed to get a lot done. Today is a long day too. I thought it was our move day, but it is the Veterans next to us. I got my first result from my last BMB. I put a message in the portal to them, as any showing of a number perks my ears!!! What does it mean?
A small myeloblast population (0.3% total events) without aberrancy is identified.
I feel wonderful, so I know my team will let me know if they have any concerns. My chimerism is not in yet, so I look forward to that. I am glad i have next to no issues for my BMB procedures, so i will always do them if they ask.

REPLY
1 reply
katgob | @katgob | Apr 11 10:55pm

I asked my team on my .3 and they said no worries.

REPLY
1 reply
mary612 | @mary612 | Apr 12 7:42am
In reply to @katgob "I asked my team on my .3 and they said no worries." + (show)
@katgob

I asked my team on my .3 and they said no worries.

Jump to this post

Congratulations and thank goodness for your beautiful BMB results!!!! Breath in deeply another gorgeous day on this planet!🙏

REPLY
Mentor
Lori, Volunteer Mentor | @loribmt | Apr 12 9:48am
In reply to @katgob "Lori, Thank you. I have worked two 10-hour days as our office is being packed and..." + (show)
@katgob

Lori,

Thank you. I have worked two 10-hour days as our office is being packed and my supervisor is at an East Coast Conference, so i needed to get a lot done. Today is a long day too. I thought it was our move day, but it is the Veterans next to us. I got my first result from my last BMB. I put a message in the portal to them, as any showing of a number perks my ears!!! What does it mean?
A small myeloblast population (0.3% total events) without aberrancy is identified.
I feel wonderful, so I know my team will let me know if they have any concerns. My chimerism is not in yet, so I look forward to that. I am glad i have next to no issues for my BMB procedures, so i will always do them if they ask.

Jump to this post

Good morning, Kat I played hooky most of the day yesterday, so I’m just catching up. ☺️ We finally have spring weather in Wisconsin so most of the day was spent outside with yard work. We also had a neighbor who cut his foot while clearing a large tree from his property. He’s out of commission for a while so my husband and I spent a couple hours over there clearing the debris, cutting limbs, tying up bundles, bagging twigs, etc. Good workout for sure! (And yes, I wore my mask the entire time…not risking a fungal infection)

Wow, lookit you go! 👀 Back to work and putting in 10 hour days! A year ago that wasn’t even on the radar. This is another positive milestone, Miss Kat! I’m sure your friends/coworkers were so happy to see you back in the fold.
Congrats on the biopsy results! Even when you’re not anticipating any bad news, getting the “all-clear” message is a real morale booster! Phew!! Happy dance, gurlfriend! 💃

REPLY
katgob | @katgob | Apr 12 2:51pm

Yea. My flow cytometry came in and no blast or anything was detected. Minimal Residual Disease.
I look at the stains that come in the report and realize i need to ask for information at my next appointment on May 2nd. I bet the research study people will be happy too.
Love this next bit. Our move day was yesterday. I worked with movers for 6 plus years with Gentle transitions, so it was natural for me to do it here. The Facility guy needed to help the tech team who is moving to new digs in the library. Both of our buildings are being leveled for progress. Theres was not built for 2025 tech services. They are in part of an old photo lab.
Wow. Using a diagram i had not seen till 2 days ago to place tables, the only note is the inches and feet. We had a kitchen, a study and a class in our prior office. It made it a lot of fun. Amazingly, a few in our facilities team insisted we had too much stuff and it would not fit. They do not know me!!!!
End of day i went over 27000 steps which was 11 miles.
Today i need to drive back as i left my computer charging cord.
And yes, on Tuesday my union board all hugged me and welcomed me back in person. All the others who helped me move. You would never guess I walked through a transplant.
Who would believe that securing the caregiver allowed that transplant and a chance of recovery!!! And meeting you Lori, Mary612 and all who are posting on this site. A community built from real life experiences.

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