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.

deb913 | @deb913 | Sep 16 9:03am

In reply to @anitasharma "Hello friends and @katgob and @loribmt How are you guys doing ??? Chilling buzzing making more..." + (show)

Hi Anita,
Itching was a huge issue for me and I stayed out of sun from about 9-5. But at 10 months post transplant my itching is almost gone so there will be an end to it 😀

Here are some tips and products that helped me. They’re available anywhere but I just happened to buy on Amazon.

- Beach spf - I could use any brand but was 9 months post transplant - use 50-100
- Had to stay out of sun under umbrella or shade from 9:00 -4

- Finished daily walks by 8:30/9am because any heat or perspiration made skin itch

- SPF/UPF clothing and hats help a lot because sunscreen is in the material

Soaps
- Hand soap: ATTITUDE Liquid Hand Soap,

- Body wash soap: Dove Body Wash with Pump Sensitive Skin

- Face cleaner : Vanicream Gentle Facial Cleanser

Lotions
- Everyday lotion not spf, not anti itch: Gold Bond Healing Sensitive Daily Body & Face Lotion for Dry, Sensitive Skin,

- Face lotion not SPF: CeraVe PM Facial Moisturizing Lotion, Night Cream with Hyaluronic Acid and Niacinamide, Ultra-Lightweight, Oil-Free Moisturizer

- Face daily SPF not waterproof for beach: Haruharu Wonder Black Rice Moisture Airyfit Daily Sunscreen 1.69fl.oz

- Daily lotion with spf sunscreen - not sticky - not waterproof for beach: Eucerin Daily Hydration Broad Spectrum SPF 30 Sunscreen Body Cream for Dry Skin, Fragrance Free Sunscreen Moisturizer, 8 Oz Tube

- Anti itch lotion (same active ingredient as Sarna lotion) CeraVe Anti Itch Moisturizing Lotion with Pramoxine Hydrochloride,

Hope this helps. It does get better.

bettersleep68 | @bettersleep68 | Sep 15 12:49pm

In reply to @loribmt "Hi @bettersleep68 To my knowledge there isn’t anyone in the forum who has had AML with..." + (show)

Thank you for your reply..my treatment is working..normal labs and no blasts...the mutations are another problem. Just a wait and see game

anitasharma | @anitasharma | Sep 15 11:48am

Hello friends and @katgob and @loribmt
How are you guys doing ??? Chilling buzzing making more Plans or just relaxing with more Dreams .
Well Hoping a good Summer for everyone .
Stay Healthy and Happy , Give Hope to everyone facing challenges and fear for the BMT Journey.
My Husband staying at home spending a quality time with their Parents and Children and Yes Off course me His only Sexy Wife ..Lol
So , He has completed almost 6 Months Post Bone Marrow Transplant (Acute Lymphoblastic Leukemia) with few Side Effects like Appetite Issues ,Itching ,Dry Eyes Sometimes and Constipation . One thing I must Say He is Dealing all this with smile and Prayers .
Can Somebody please let me know more about GVHD Chronic as what to be avoided for at least a Year after the Transplant Specially for the Skin .???What is best Sunscreen or Lotion because he complains more about dry and Itchy skin ????
This will be a great Help!
I would also like to say Happy Birthday @katgob !
I know I am late but wishes and blessings never got fade. Congratulations on your 500 day post transplant milestone too . It gives more Positivity to others ..Chearssss
Last but not the least fight for your happiness and Enjoy each Day !
Take Care ..keep Smiling !

Lori, Volunteer Mentor | @loribmt | Sep 15 9:39am

In reply to @bettersleep68 "Lori...can you help me find the link on the woman that had aml but spontaneous healing" + (show)

Hi @bettersleep68 To my knowledge there isn’t anyone in the forum who has had AML with spontaneous healing. However, I think you might be referring to @gardeningjunkie who was diagnosed with CLL and experienced a spontaneous regression from her disease. Here’s her story. https://connect.mayoclinic.org/discussion/cll-spontaneous-regression/

CLL and AML are two completely different types of blood cancers. It’s best to stick with your current treatment plan. I hope you saw the postive reply by @sonieaml regarding her similar story of AML with mutations/similar treatment plan. These medications can work to help patients who may not be candidates for a BMT. Here is her reply to you: https://connect.mayoclinic.org/comment/1392148/

How have you been responding to your treatments?

bettersleep68 | @bettersleep68 | Sep 14 4:46pm

In reply to @loribmt "Oh happy day!! @anitasharma, this was such a wonderful message! I’m so thrilled to see that..." + (show)

Lori...can you help me find the link on the woman that had aml but spontaneous healing

katgob | @katgob | Sep 13 12:48pm

In reply to @katgob "Hi all, I went on my weekend dessert trip and found earlier was better to get..." + (show)

I wish dessert. I meant Desert out by Palm Springs.........

katgob | @katgob | Sep 12 11:41pm

Hi all,
I went on my weekend dessert trip and found earlier was better to get a walk. It was a desert resort so i mostly walked the property. I found the gold course and fake water pounds brought the humidity forth, so i walked the parking lot and the street that had streetlights.
I bought 4 hats on the Sunday I left. Two from REI and 2 from the hat shop. Such fun!!! All for sun, 3 with good brims and one smaller.

Today i am posting to remind myself i am a transplant patient. I hope more out there give us updates. I was in a research forum at COH to get those with genetics tests to begin post their experience and if they are glad, they did it. One of those administering the study called to ask me if i got the survey. Also, if i want to be interviewed. Funny, I do imagine Mayo Clinic started the way COH is, so i suggested this gal check out this site. I told her it is a fabulous place where good information and people from around the world log in and find answers. This site has taken years to develop into this tool for life. Every hospital could use a forum for patients to get answers. May will always be a place i come too. I find Lori first who helped make my transplant easier. I knew what was coming from someone who knew. I was in a breast cancer zoom meeting and so many women fear so many procedures. Only one i know comes here. Here you find answers.

jmike65 | @jmike65 | Aug 29 12:39pm

Hey @katgob ! You made me look! What do you know...today is 506 days since my BMT!

Congrats to both of us!

katgob | @katgob | Aug 29 12:14pm

Mary, What a wonderful update! Such a great update that mirrors mine!!! This forum reminds us there are so many walking this road without the bonus of a fellowship of new friends who have walked this road of a BMT for some dang blood disease.
Sometimes with information like 100 chimerism, I do not realize the magnitude of it. As a kid i would get excited about an accomplishment but found no one in my family of 6 others to feel the same about it. Later I realized my mom was so busy with 5 kids, dozens more she babysat, a funky husband, my dad and literally no time for herself.
For years and years. It reminded me as i read your update of the joy it is to share with another. Your post brought me joy.
I shall reflect on my Labor Day weekend off thanking the scientists, Doctors, nurses, lab workers, blood draw department, scan and surgeon staff and doctors for their education, time and love of what they do.

mary612 | @mary612 | Aug 29 7:09am

In reply to @katgob "Quiet. On Monday the 25th i turned 65 yrs old. Crazy. At my 6-week follow-up my..." + (show)

Happy Birthday @katgob !
A momentous day in your new life! Congratulations on your 500 day post transplant milestone too.
So happy you are feeling well and making plans for the beautiful Fall ahead.
So great to hear a positive update from you.

We just received favorable results on my husband’s most recent BMB. We are riding the waves of joy and anxiety as these biopsies are done every 3 months for his original high risk AML. Also 100% chimerism, stable labs, tolerating monthly maintenance therapy, and proceeding with all his vaccinations too. He also just received his second shingles shot, Amen!
He is closing in on 1.25 years post stem cell transplant anniversary! We literally say a prayer out loud every day together, thanking God for another day. We’re right there with you!

Keep drinking lots of water, enjoy your meaningful work, and have fun!

Mary

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