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.

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
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
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

Jump to this post

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
Mentor
Lori, Volunteer Mentor | @loribmt | Apr 5 9:48am
In reply to @katgob "I have my 5th BMB April 4th. One at a time, we can get it done...." + (show)
@katgob

I have my 5th BMB April 4th. One at a time, we can get it done. The best truth about our bodies comes from this test. Blasts and white, red, platelets and those counts. The info will provide the roadmap to the next step.

Jump to this post

Hi Kat! Checking in with you to see how your appointments went yesterday! I hope the BMB was smooth sailing and of course, we’ll only accept awesome results. 😁 Can you believe you’re just 4 days from Day +365?? Hugs and a high five!

REPLY
sally66 | @sally66 | Apr 4 6:08pm
In reply to @loribmt "Hi Sally, We stayed at the Marriott Residence Inn, 441 W Center. It’s just two blocks..." + (show)
@loribmt

Hi Sally, We stayed at the Marriott Residence Inn, 441 W Center. It’s just two blocks from the clinic and has access to the subway (underground walkway) so it’s a straight shot over there day or night, with no exposure to nasty weather.

The first couple of weeks I required a wheel chair because I wasn’t up to walking the two blocks. So it was really convenient for my husband to wheel me over to the 9th floor of the transplant center. (Methodist hospital). We had one trip in the middle of the night and were grateful to be able to just rush over there without having to get in the car, find a parking space, etc. Oh, and Mayo lets you borrow a wheelchair which we took back to our hotel for easy transit.

We opted for a 2 bd/2bath suite so I could have my own room/bathroom. It had a full kitchen with stove/oven, dishwasher, large fridge, all the utensils and dishes, so you can set up housekeeping. The unit even had a fireplace in the ‘living room’ which was a nice touch. There’s a gym and onsite laundry.

When we visited, Rochester, last October (2024) there was a large remodeling project taking place to upgrade all the rooms. I’m eager to see what they’ve done!
(I just checked the website and the new photos aren’t up yet of the remodel. But you’ll get the idea of the rooms and amenities)

Wherever you decide to go, try to sign a lease. If you stay somewhere for 30 days and use a month to month lease, it saves on the county room tax. Most places are very flexible if you don’t stay the entire length of the lease.
Also, many insurance companies offer a room allowance so be sure to ask your Insurance case worker about that.

We really loved staying at the Marriott. (We still return there for my followups) The staff are super friendly and helpful. The rooms are squeaky clean. There’s breakfast in the morning and there used to be Wine Down Fridays? Not for me to enjoy, but my husband took advantage of that. There is onsite parking.

Do you have a target date for your transplant?

Jump to this post

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

REPLY
2 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Apr 4 5:18pm
In reply to @sally66 "Hi Lori, I know I had asked you this before but can't find the post. Where..." + (show)
@sally66

Hi Lori,
I know I had asked you this before but can't find the post. Where did you stay when you were here at Mayo post transplant? I think you talked about a hotel suite close to Mayo? Thank you,
Sally

Jump to this post

Hi Sally, We stayed at the Marriott Residence Inn, 441 W Center. It’s just two blocks from the clinic and has access to the subway (underground walkway) so it’s a straight shot over there day or night, with no exposure to nasty weather.

The first couple of weeks I required a wheel chair because I wasn’t up to walking the two blocks. So it was really convenient for my husband to wheel me over to the 9th floor of the transplant center. (Methodist hospital). We had one trip in the middle of the night and were grateful to be able to just rush over there without having to get in the car, find a parking space, etc. Oh, and Mayo lets you borrow a wheelchair which we took back to our hotel for easy transit.

We opted for a 2 bd/2bath suite so I could have my own room/bathroom. It had a full kitchen with stove/oven, dishwasher, large fridge, all the utensils and dishes, so you can set up housekeeping. The unit even had a fireplace in the ‘living room’ which was a nice touch. There’s a gym and onsite laundry.

When we visited, Rochester, last October (2024) there was a large remodeling project taking place to upgrade all the rooms. I’m eager to see what they’ve done!
(I just checked the website and the new photos aren’t up yet of the remodel. But you’ll get the idea of the rooms and amenities)

Wherever you decide to go, try to sign a lease. If you stay somewhere for 30 days and use a month to month lease, it saves on the county room tax. Most places are very flexible if you don’t stay the entire length of the lease.
Also, many insurance companies offer a room allowance so be sure to ask your Insurance case worker about that.

We really loved staying at the Marriott. (We still return there for my followups) The staff are super friendly and helpful. The rooms are squeaky clean. There’s breakfast in the morning and there used to be Wine Down Fridays? Not for me to enjoy, but my husband took advantage of that. There is onsite parking.

Do you have a target date for your transplant?

REPLY
1 reply
sally66 | @sally66 | Apr 4 2:26pm

Hi Lori,
I know I had asked you this before but can't find the post. Where did you stay when you were here at Mayo post transplant? I think you talked about a hotel suite close to Mayo? Thank you,
Sally

REPLY
1 reply
my44 | @my44 | Mar 27 6:20am
In reply to @katgob "Great news! I am 351 days past transplant, and minus my very short hair, I feel..." + (show)
@katgob

Great news! I am 351 days past transplant, and minus my very short hair, I feel great. Keep us posted. April 9, 2024, was my transplant.

Jump to this post

@katgob, I'm still keeping an eye on you and your journey. Day 351...wow! Girlfriend, you're coming up on your one year anniversary very soon and I hope you're already in the process of planning something special to celebrate that momentous milestone!

REPLY
my44 | @my44 | Mar 27 6:09am
In reply to @loribmt "Oh my…@my44. Thank you from the bottom of my heart for this incredibly sweet message. It..." + (show)
@loribmt

Oh my…@my44. Thank you from the bottom of my heart for this incredibly sweet message. It is a warm and fuzzy feeling to be appreciated. I’m so awkward at accepting complements but deeply moved when I realize I’ve be able to help someone or maybe brightened their day. Humor, sometimes inappropriately (😅) has gotten me through some of the seamier moments in life so I tend to inflict it on everyone else. Can you imagine my poor family. 😁

Here I go running off at the mouth again. Cutting to the chase…we’re all on this planet together and I truly believe it’s so important to help each other with compassion and understanding for what they’re going through and offer a hand, an ear or a shoulder…

I also appreciate you for being such a caring and active member in Connect. You’ve had your own medical drama and use your life experiences to support and encourage to members, too. We’re all part of an amazing group of people who are the helpers…an honorable role in our society.
So, thank you, Tif. Your appreciation is like a warm hug. 💞

Jump to this post

You're welcome, Lori. You certainly deserve all of the accolades. And see, even in this latest post your humor is brightening up my day and bringing a smile to my face. Life and our medical situations can be so serious and dire, so we definitely need some levity in our lives. I, for one, would rather laugh than cry, and you help me to accomplish that...even when your posts aren't directed to me and may not have anything to do with what I'm going through at the moment. But I benefit vicariously from your posts to others.

Thank you for your kind words to me. They encourage and motivate me. (Fyi, I'm not so good at accepting compliments, either 😊).

Lori, please keep being you. We, on Connect, love and need you. 💕

REPLY
katgob | @katgob | Mar 26 7:50pm
In reply to @loribmt "Oh my gosh, talk about a brain ‘fuuffff’. I totally went rogue with this one…sorry about..." + (show)
@loribmt

Oh my gosh, talk about a brain ‘fuuffff’. I totally went rogue with this one…sorry about that! We’ve had a few new transplant members in the past couple of days so that’s where my head was! So, we’ll bring this back down to a BMBX instead of a BMT. 😀

This bone marrow biopsy will be a good source of information to see if there was success with the chemo. I’ll keep my fingers, toes, and eyes crossed for you for a clean biopsy!
I remember you’d been dealing with back issues that had interfered with the start of the next round of chemo. Were you able to continue with the 2nd session?

Jump to this post

I have my 5th BMB April 4th. One at a time, we can get it done. The best truth about our bodies comes from this test. Blasts and white, red, platelets and those counts. The info will provide the roadmap to the next step.

REPLY
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