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.

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.........

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

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?

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 !

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

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.

katgob | @katgob | Sep 30 11:49pm

Today we had a "Latino/Latina" student info fair at my college. I chatted with many and near the end three young men in the nursing program stopped by the table i was at. One of the professors gave them advice, then i added i was treated at the City of Hope and loved most of my nurses. One fellow says i work there. I asked him where and he said Floor 6. I said the Hope Plaza? He said yes. Then I asked which floor was that. He said the bone marrow transplant floor. I said i go there. I said also Floor 6 in the hospital where we transplant patients live for up to 30 days. Oh my, he said that is where he is working!!!! I said my goodness use your kindness and why you chose to be a nurse and give smile and kindness to those on that floor. We feel it and we need it. I was treated very well and loved most of the nurses working on that floor. Be the one who is loved.

Most days i feel like i always did and daily walking is still happening. Yesterday i listed to a breast cancer thing put on with 4 panelists. One Dr. Lee spoke of the Integrative medicine brought to the City of Hope in their newbuilding. Another speaker i met because she was the one who removed my port. The main one spoke about exercise and the studies showing the value. This Dr. says a few other hospitals including Mayo are working on providing the importance of regular exercise in the body's recovery of the traumas due to cancer. From him I "HEARD" that varying the speed of the walk is necessary. Run in various place on my walk, jog, and take along some hand weights. The research students are geared for Stage 1 or 2 patients that had the 4th speaker speak up. She is an oncologist living with metastatic stage 4. Working with research and info is provided keeps her busy. It is to be posted on their website. A question at this event was if other parts of the body are involved. They said just breast cancer for this study.
It reminds me that for many, stage 4 is not the end. Life will likely have treatment for a very long time, but we know LIFE is worth it.

alive | @alive | Oct 1 7:39am

In September I was on a business trip in Kazakhstan with a team from my university. One evening I went for a walk with one of the professors who was on our team. He started talking about his sister who was getting ready for SCT in the beginning of October. I had an opportunity to share my experience with AML and transplant. He was encouraged to hear that I was 9 years post transplant and doing so well. I am always very happy to share my story and give others hope.

clock456 | @clock456 | Oct 2 5:26am

My husband is one year post SCT for B-ALL on Aug 23. They let him postpone his one-year testing until we returned from our Alaska cruise. Yesterday, they told us while the testing is still showing no leukemia there is indication that it is returning. He has to repeat the bone marrow biopsy in a week, and they are preparing him to start undergoing immunotherapy and car-t therapy. They want to stay ahead of the leukemia. The immunotherapy will be a continuous pump for 30 days with the first week in the hospital. He is determined to keep fighting but this is not the news we wanted to hear.

Lori, Volunteer Mentor | @loribmt | Oct 2 9:23am

In reply to @clock456 "My husband is one year post SCT for B-ALL on Aug 23. They let him postpone..." + (show)

@clock456
Oh gosh, that’s news no one wants to hear! But how fortuitous that his doctors are catching the indications early and are preparing for some quick intervention! CAR-T has been really gaining ground for targeted treatment of ALL. I wish him all the best as he enters this new phase of treatment.

I know this is a time of mixed emotions with just returning from a glorious vacation in Alaska. I hope you had a wonderful time on the cruise. Maybe print out a couple of your husband’s favorite pics to have in his hospital room when he starts his immunotherapy.
Please keep me updated with his journey. Will this be the same BMT team at Mayo-Jacksonville?

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