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.

Lori, Volunteer Mentor | @loribmt | Jan 30 9:42am

In reply to @dwolden "17 months post allo SCT and my husband is dealing with chronic GVHD (apparently relatively mild)...." + (show)

@dwolden Thanks for posting this resource! I launched a new discussion this morning and added your suggestion of bmtinfonet.org to the list of helpful transplant resources!

Here’s the new discussion. https://connect.mayoclinic.org/discussion/bone-marrowstem-cell-transplant-informational-websites/

dwolden | @dwolden | Jan 31 6:35am

In reply to @loribmt "@dwolden Thanks for posting this resource! I launched a new discussion this morning and added your..." + (show)

@loribmt thanks Lori. You are so well organized.

anitasharma | @anitasharma | Feb 4 2:54pm

On World Cancer Day Feb 4,2026 >>>>>
We stand United for Hope ,strength and resilience .Together through awareness, Early care and advanced treatment amazing Doctors and Nurses we fight Cancer stronger than ever.
I salute each one of you who is going through with Cancer .
You all are fighters and Survivors
Don't give up .......keep fighting .

katgob | @katgob | Mar 20 5:09pm

To all my fellow PMT friends on here. I was reminded on my breast cancer zoom meeting today, that it is hard to understand unless you have had the cancer. For me, a lumpectomy was not in my cards. Those not having a mastectomy do not know how it feels to be a women or man without the breasts you were born with,
On this thread we have all had Bome marrow biopsies, often more than one.
Then the transplant.
Last night i had Bunco and one of the subs is a woman whose husband died of leukemia. She was subbing for the women whose husband also passed from cancer. In both cases, I knew their husbands were being treated. One had been for 6 years. As I recall, he either got his own cells or a child's. It came back. So last night's gal asked me how I was doing. She said you look good. She is the friend of my caregiver's roommate, so she saw me in my 1st 50 days. I told her that to be truthful, I am not thinking daily will i suddenly get side effects?? I have not had them, and I will never know if the research study of an extra pill for 90 days kept me good the crucial first 100 days.

So many of us have similar treatments. For today, I am 1000 times grateful City of Hope, Cedars Sinai and this very connect for all i have received since July of 2021. Being part of a research study is something i would encourage others to look into. You do not have to be on the 1st line. I think i got in on the 3rd group. In some cases, it may be of help. One more thing, is in my original oncology post after my last Friday yearly update, I am listed under "longitudinal study patient".
So many people do not have connections on these journeys. Here we get reminded that there are resources. Counselors and zoom meetings and what we find here. Truth in the written word.
I hope some people pop back in with updates.

lorielLB | @lorieliebrock | Apr 6 7:42am

In reply to @secglc2 "My Story I am blessed! God worked a miracle through me! I was dying at a..." + (show)

@secglc2

My Story

I am blessed! God worked a miracle through me! I was dying at a Colorado hospital. I was getting weaker and weaker, my fevers kept spiking and the doctors didn’t have a clue! Boarding a medical flight, I was transported to the Mayo Clinic, where God saved me! Let me tell you my story.

It started with flu-like symptoms in early November 2018: I felt terrible, very weak, had night sweats, couldn’t eat. Losing 45 pounds, I was aghast at my appearance, I was emaciated. My primary care doctor sent me to the gastroenterologist, thinking my condition was an ulcer because of the blood in my urine. The gastroenterologist immediately sent me to the ER because I had a high fever and very low blood pressure. My feet and ankles were swollen like softballs.

In early December, I was admitted to the hospital and spent one week there. They ran a bunch of tests, but couldn’t figure out what was wrong. They released me with a diagnosis of “fever of unknown origin.” I was sent home with an appointment to see a rheumatologist. That doctor thought I had Stills disease, so she treated me with steroids for two months while I was at home. Each day was a distressing surprise of further deteriorating problems. A urinary tract infection developed, followed by thrush in my mouth. I also experienced the most embarrassing thing, my rectum came outside my anus. A visit to the proctologist was needed to get it put back in. Living on the couch, I was so tired and thirsty all the time. The steroids helped a little bit. They barely got me through Christmas, but I was still having terrible night sweats, changing my pajamas three times a night because of being drenched in sweat. In late January 2019 ,the rheumatologist sent me to the hospital, via the ER where I spent the month of February.

Too weak to lift a fork, severe anemia was rampant, iron blood levels fell below 7 g/dL (normal is 12-15 g/dL). Multiple blood transfusions were administered and iron was given by IV. My arms turned black from the incessant needle poking. The doctors gave me on multiple occasions a cocktail of medicine, which gave me nightmares. They did multiple tests, including a brain biopsy. The surgeon hit the mark, but touched my brain, which caused a stroke, resulting in numbness to my left side. I couldn’t walk, my mouth was drooping, oxygen was given at three to four liters per minute, and my feet and legs were swelling greatly. My temperature would roller coaster from mid 80s°F to 103°F. Time was a blur during the disease, all sense of time and space was lost. The simple task of thinking required intense concentration. The doctors there could not determine a diagnosis. Meanwhile, I was getting weaker all the time. The doctors couldn’t tell me anything in terms of my diagnosis. They couldn’t even come up with a plan for diagnosis. My frustration was increasing. Bedsores were beginning to develop on my body.

Through the grace of God and my husband’s diligent work, I was medical flighted to the Mayo Clinic on March 7, 2019. Upon arriving at St. Marys, we felt a sense of peace. God’s presence is evident there. It was comforting to see a picture of Jesus or a cross in every hospital room.

Within two days, the doctors at Mayo took 750 ml of fluid off my lungs, which resulted in no longer needing oxygen. I had several blood transfusions and plasma transfusions while at St Marys. Several units of iron for my anemia were applied. I was incontinent. Then within five days of arriving at Mayo, the doctors at Mayo diagnosed me with Primary CNS Lymphoma,(diffuse large B cell) a rare and aggressive white blood cell cancer. The tumor was deep within my brain, and inoperable. They started chemotherapy and physical therapy. Getting around for the next few weeks required using a walker. The goal of many a day was simply a walk and a shower. I felt Jesus with me. He prevented me from having any pain and told me that I was going to be all right. I was in hospitals at Mayo Clinic continuously from March to late May. Then, in and out of the hospital through August.

Stuart and I moved to Rochester, Minnesota for six months. God bless my cousin and her in-laws for offering their house to use for two months free of charge! Then we rented a house in nearby St. Charles for a couple of months. After that, the doctor wanted us closer to the hospital, so God blessed us with an apartment in a park by a stream, Cascade Creek. We often walked along the stream, as it was a joy to us.

To my great delight, God provided a divine appointment(coincidence) one day when 2 nurses walked in my room and introduced themselves with the same 2 names as my daughters!

I was treated with MRT chemotherapy for six months. At this point, my PET, brain MRI, CAT scans and extensive blood tests were all negative! I was now a candidate for a stem cell transplant. A growth factor drug called neupogen was given to me. This drug told my stem cells to report to the bloodstream. It worked so well, the doctor jokingly called me an over-achiever! My body produced double the stem cells needed and in only one day, which is uncommon. I had an autologous (from my own stem cells) stem cell transplant in August 2019. I was cured and released after 21 days! The chemo wiped out my childhood immunizations, so I had to get those again.

God worked through the doctors and nurses at the Mayo Clinic. I am forever grateful to them. Being treated with respect and love is standard care for them. I am thankful for all the hospital visits from family, friends and the pastor from my church. I was especially elated to see my daughters come to visit me both in Denver and Rochester. Their presence was comforting to me, along with my mom, and sisters who also came. Thanks to my friends, and brother-in-law, for their multiple trips to see me. It was good to see my cousin, and his wife, who were at Mayo for his checkup. It was also good to see Stuart’s cousin, and his wife, who were also at Mayo for his checkup. My sweet hairdresser stopped by the hospital to cut my hair. That brightened my day! I am thankful for all the prayers from family, friends, and the church. My mother texting me scripture verses every day, along with receiving wonderful cards from family and friends, and Stuart bringing in music kept me upbeat. I was amazed by all the prayer chains I was in around the country. Prayers are powerful! I am especially thankful to my husband, Stuart who fought for me and stood by me through it all. We are both so grateful to Stuart’s employer for providing great insurance and time off.

The difference between for profit and non-profit medicine became very apparent. We were bombarded with separate bills from every provider I had at the Colorado hospital. Most of the providers at this hospital are contractors. Mayo presented us with one bill. With the Colorado hospital, it was all about the money; with Mayo it was all about the patient. Mayo works as a team and they put the patient first.

Our insurance, United Health Care took care of us. They stood by us when battling for my records and for release with the Colorado hospital, they communicated with Mayo Clinic. They called many times to check up on me. They stood by their amazing benefit plan. They provided a jet and ambulances to get me to Mayo.

I was in the hospital continually from February through May, then off and on through August as I received chemotherapy. I don’t know God’s purpose for this illness, but He filled my heart with such tremendous love and joy. I hope the light of Jesus shone through me during this time.
In God’s graciousness, He cured my severe lactose intolerance and changed my straight, thin, blonde hair to thick, dark, beautiful curls!

Recently was my one year checkup, with clear results! I’m back to hiking, gardening, volunteering and Bible study.

God is good!

In His Name,

Gwen Collins

Psalm 30:2 O Lord my God, I called to you for help and you healed me.

Psalm 34:7 The angel of the Lord encamps around those who fear him and he delivers them.

1Peter 5:10-11 And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. To him be the power for ever and ever. Amen.

Is 38:16 . . . You restored me to health and let me live.

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@secglc2
Gwen,
I just read your SCT story. Thank you for sharing it.

I pray you are still cancer free. Your praise to God for your recovery is inspiring. You give enormous hope to those of us following you - admittedly with a much simple case of myelofibrosis - but trying to prepare for the SCT.
Thank you again.

secglc2 | @secglc2 | Apr 6 9:56am

In reply to @lorieliebrock "@secglc2 Gwen, I just read your SCT story. Thank you for sharing it. I pray you..." + (show)

@lorieliebrock
Good to hear from you! I pray you have a complete recovery & that you feel God’s presence near you.
I’m over 6 years cancer free!

anitasharma | @anitasharma | Apr 9 10:12am

Good morning all lovely people here ......
Hoping for a new beginning with positive attitude and grateful days .
So, here I would like to ask Is Vitamin D3 a good supplement for a cancer patient to avoid recurrence ??? I read it on an article ,which said about few Supplements to be taken .
Well its going to be a year this month end for my husband for bone marrow transplant for Acute lymphoblastic Leukemia diagnosed last year January 2025.
Although he is doing good but still on recovery mode , he often complains for tiredness and breathing issues . It’s always good to hear about other people’s healing journey for perspective. We should be grateful to God everyday . Please share if your Doctors suggested any Supplements to be taken for Cancer recovery.
Thanks and have a wonderful day everyone .
keep Smiling ,Life is short start living to the fullest .

katgob | @katgob | Apr 9 4:44pm

In reply to @anitasharma "Good morning all lovely people here ...... Hoping for a new beginning with positive attitude and..." + (show)

@anitasharma

Good day. Thank you for updating us. One year nearly. It is amazing how time passes and the transplant portion takes a back seat to todays this and that. I feel sometimes i need to change my habits to see why something is happening. I have gotten up most days at 5am since my transplant. Living in So Cal, early gets me outside and moving.
I just went in my portal and saw i had education topics to read before my treatments. I never read them.
I note on one it says to track energy levels. When might i do most activities. Always keep your transplant team informed.

Because of my osteopenia diagnosis i am on Vitamin D, Pharmacy strength. Drisdol i think and i take it once a week.
Drisdol is a prescription form of vitamin D2 (ergocalciferol) used to treat vitamin D deficiency-related conditions such as hypoparathyroidism, rickets, and hypophosphatemia.
Uses
Drisdol is primarily prescribed to treat hypoparathyroidism, a condition where the parathyroid glands do not function properly, leading to low calcium levels in the blood. It is also used for rickets, a disease characterized by softening of the bones due to vitamin D deficiency, and familial hypophosphatemia, which involves low phosphate levels in the blood. Additionally, Drisdol may be used for other conditions as determined by a healthcare provider.
I was not aware Vitamin D had other uses. Maybe Lori or another monitor knows. I will search on mayo today.
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IMPORTANT

TODAY is my 2-year Birthday!! My transplant of cells was on April 9th, 2024. I am not sure if i had gone to another hospital if it would be the same results. My research study for GVHD is likely why i have had few bad side effects. Side effects i have now originated with my breast surgery. Neuropathy, dry skin, brittle nails and blood clots. Estrogen loss and chemo plus a body that makes blood clots.

I am grateful to be doing as well as i am.

Lori, Volunteer Mentor | @loribmt | Apr 10 8:55am

In reply to @anitasharma "Good morning all lovely people here ...... Hoping for a new beginning with positive attitude and..." + (show)

Good morning, @anitasharma! It’s so good to hear from you!! Can it almost be one year since your husband’s bone marrow transplant??!! It’s always amazing how quickly time zips past! I know those first months of transplant, when you’re ticking off those important 100 days, feels like forever. After that, haha, time speeds up! ☺️

It’s wonderful he’s doing so well. The first year and actually into the 2nd year is still recovery mode. The body goes through a great deal of adapting and healing. Fatigue, at least for me, would come and go. I’d have great energy, like a puppy with the zooms, for a week or so and then boom, I’d require a day or more of just being a pile of mush on the couch. I napped, vegged out with good book or binge watched movies. Recovery simply can’t be rushed and each of us will have a unique journey.

As far as supplements, I’ve had discussions over the years with my team at followups. Should I take supplements to boost my immune system? The answer was always, “Avoid supplements that say they will boost your immune system. The immune system is amazing on its own. When it gets ‘boosted’ beyond its intention then it starts working against itself with examples of Autoimmune diseases. Which we surely don’t want.”
So it’s very important for your husband to discuss with his doctors first before beginning any supplements
Other than a daily magnesium glycinate capsule and calcium with Vitamin D3, (for my bone health) it was suggested that I just make sure I have a healthy, well balanced diet rich in antioxidant foods, high in colorful veggies, fruit, lean meat proteins, protein-rich foods, beans, lentils, whole grains, etc.. Too much of any one type of supplement in the body can throw off the body chemistry. Many supplements are unregulated so consistency of potency, ingredients and side effects are unpredictable. I’m not knocking supplements. There are reputable companies and some people swear by supplementing their diets.

From my own experience over the past few years, my labs showed that taking a brand-named daily multivitamin for women, impacted my liver with too much Vitamin A. As soon as I stopped the vitamins, next labs showed improvement. Took the vitamins again, repeated labs, and sure enough, labs were off again. So it was clearly the vitamin tabs. Similar with too much Vitamin D. That impacted my kidneys! So I’m back to the daily recommended allowance.
I’ve had other supplements such as too much ginger tea causing circulation issues…it’s a vasodilator.

I’ve also been told to never take probiotic supplements for gut health. They can cause an overpopulation in the gut for people who have weakened immune systems. Instead, eat yogurt, drink kefir, eat fermented foods such as Kimchi, raw sauerkraut, all natural foods for gut health. The key is to rely on healthy foods, veggies, fruits, fresh air, a ‘little’ sun exposure for Vitamin D.

For my lung health during BMT recovery, I continued to use my spirometer that I was given during my earlier chemo treatments. I wonder if that would help your husband? It’s just a simple little plastic device to breath into that helps strengthen the lungs. Here’s an article from Cleveland Clinic that shows a spirometer and how to use it. Just a thought… https://my.clevelandclinic.org/health/drugs/4302-incentive-spirometer

Has your husband discussed his breathing issues with his doctor?

Lori, Volunteer Mentor | @loribmt | Apr 10 9:05am

In reply to @katgob "@anitasharma Good day. Thank you for updating us. One year nearly. It is amazing how time..." + (show)

@katgob

@anitasharma

I am grateful to be doing as well as i am.

Jump to this post

Happy Rebirthday!! @katgob Spring, a time for Renewal for so many of us! Congratulations on Cell-ebration #2! You have been the “Poster child” for how this is all supposed to go! And I so appreciate the input, advice and the encouragement you’ve given all of us over the past couple of years. Not only in the BMT group but also in the breast cancer support group.
You are a force, my dear! Your positive attitude along with your tenacity, resilience and cooperation with your medical teams have gotten you through some incredibly challenging times. 🥰 Time to Cellebrate!! 🧬🎈🧬 LOL Those are supposed to be DNA strands and instead they look like bikini tops! 😂

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