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

So, I kicked off this discussion group with my story. Now I'd like to hear from others who have had a bone marrow transplant; autologous or allogenic stem cell transplant or been the a caregiver to someone who had BMT or SCT.

@kjjjrader @tedwueste @rwalkie @tmvanla @waveg @duttasujata @edb1123 @mjpm2406 @buckyc71 @javajude @jeaniecm @evett @ckeys @jeremy88 @chickey @mjrussell2 @motherboard @lel @gorjis1 @zellheff @auntieoakley @craigkopcho @bobby2014 @lakegirl409 will you join me? Pull up a chair and share your BMT or SCT story.

Here are some questions to consider as you write your story:
– Focus on yourself and how you felt, what you did, who helped you?
– What led to your needing a bone marrow or stem cell transplant?
– What was recovery like?
– How is life now since your transplant?

Looking forward to some great discussions! Lori.

Hi, Lori:

My story began one year ago on Jan. 25th, a year to the day after my husband’s diagnosis of a malignant tumor in his sinus cavity. In December, 2019, I decided to retire early at age 60 because of his diagnosis, wanting to spend more time with him (although he was cancer-free by then). We planned to spend the month of February, 2020 in the Palm Springs area. However, I was experiencing shortness of breath after going up stairs and very fatigued, which was very unusual for me. I went to Urgent Care just 4 days before we were scheduled to leave for Palm Springs. After several tests, I was told I had Acute Myeloid Leukemia, and that I needed to be admitted to the hospital for “about a month”! Of course we were both shocked and felt like it was a cruel joke -one year after my husband’s diagnosis? We knew nothing about this disease, but we quickly learned that chemo would be needed to get me into remission before a bone marrow transplant could be done. We were also told that we would have to relocate to Rochester for 100 days so we would be close to the Mayo Clinic.

Unfortunately, the first induction chemo (7+3) only killed off about 50% of the disease, so I had to have another chemo regimen (MEC). That treatment got me down to about 15%, but not low enough for the transplant, so they put me on Venetoclax (Venclexta) and shots of Vidaza (Azacitidine). These two drugs got me down to less than 1%, low enough for the transplant.

My BMT was scheduled for mid-June in Rochester, so we rented a condo there for 3 months and went down on June 1st for testing. Unfortunately, the cytogenetic test results showed two abnormal chromosomes, so the BMT doctor decided to postpone the transplant and put me back on the “two V’s” to kill them off. We moved back home to the Twin Cities for a month and then moved back to Rochester for the transplant on July 22nd. It was really disappointing to postpone the transplant because we had mentally and emotionally prepared ourselves for the move and the 100-day stay, only to go home for a month and then pack up all over again!

The transplant itself was very anticlimactic - done in less than an hour, just like a blood transfusion. Afterwards, however, I had issues such as mouth sores, lack of appetite, weakness, light-headedness, diarrhea, rash, and nausea/vomiting. This lasted for about a month and then got better. Some of this was related to meds, some to GVHD. During this time, I was going into the clinic every day (and was hospitalized for 12 days due to a fever), but eventually was going twice/week.

My recovery was going so well after a couple months that the doctor let us move home about 3 weeks early. I was walking up to 2 miles a day, eating and sleeping well, and not having many side effects. However, we had to isolate ourselves from friends and family due to COVID. I was very lucky to have a retired husband as my caregiver who could pick up and move at any time, and drive me to the daily, biweekly, and bimonthly. We are lucky to live 1-1/2 hours from Rochester, so we can usually drive down and back for tests and checkups in one day.

Unfortunately, I developed pneumonia and acute respiratory failure in late November and was hospitalized for 17 days, part of the time in ICU. After being released from the hospital, I was very weak from being in bed all that time, so I had to rebuild my strength and gain back some weight. I now feel like I’m back to 100% but it has taken almost two months. Of course, I would like to do more and see more people because I’m feeling good now, but COVID is preventing that.

Needless to say, it has been a very long, stressful journey since my diagnosed a year ago, but I am thankful and lucky to have a devoted caregiver and a large support system of family and friends who have helped us throughout. My only advice for others going through this is to focus on one day at a time. There will be twists and turns, but that is out of your control, so just take things as they come.

Thanks!
edb1123

@edb1123 Hi Elaine, you and I have spoken before so it feels like we’re old friends. Thanks for being the first to respond to this new posting. There are very few of us on the transplant site so I’m hoping with time we’ll get some great dialog going between BMT/SCT patients and caregivers. We all have such unique stories of how we got to this point. Nothing is ever totally predictable; so many variables with each of our bodies and our new immune systems being introduced. Keeping a sense of humor, a sense of adventure and a positive attitude are the keys to getting through this!! LOL.

Our stories started a year apart, almost to the day in January, with both AML stories more drastic than the transplant. My epic adventure started a day after my 65th birthday when I woke up with a tickle in my chest. “ Ugh, please, I don’t want a cold.” To this point I’d been perfectly healthy, energetic as always and had no inkling what bomb was about to drop. Daily, the cough progressed. It was unproductive but steadily growing worse. We were to leave for Florida in a week and I wanted to feel better by then!

Went to my GP. She listened to my chest, wasn’t concerned and said I had bronchitis, even though I’d not had a cold or any symptoms. Recommended we “get in that car and head to Florida. The sun and fresh air is what you need.” I told that to my husband and we both agreed, we’re not going anywhere! This cough was nasty. Over a 3 week period the cough worsened. I became weaker, my skin developed a pallor and I had a sustained fever of 102. I visited my doctor 2 more times and she still maintained I was ‘just fine’. By the 3rd visit I’d developed pneumonia and she was reluctant to take blood tests, citing that we now have a diagnosis, the doxycycline will take care of it. My husband was persistent and blood tests were run. At this point I no longer cared. I was ready for a veterinarian to put me down! I could barely walk on my own. That afternoon my doctor called me and said the blood results are in, that she received a call from our local hospital where a room is being held for me in the oncology/hematology department, that I needed a transfusion and oh, pack an overnight bag. Apparently you have leukemia. Boom! That’s how I found out.

In the hospital room that night, Feb 6, 2019, I remember this super sweet oncologist (one of five I’d have on that team) sat holding my hand. He was telling my husband and our 2 closest friends who saw us through the past 2 weeks, that I had AML. It would need to be hit hard because this is very aggressive and depending on the mutation, is difficult to treat. A week later, my chemo started. I had the standard 7+3 induction and was in the hospital for 5 weeks. The first BMX at 30 days showed an all clear so we were relieved but still required another week of chemo every 28 days for the next 2 months. During that time, we learned that the 3 mutations which had caused the leukemia made it necessary to have a bone marrow transplant, as it would most likely return with a vengeance and become untreatable. Our choice for transplantation was Mayo Clinic.

June 2019 my husband and I relocated to Rochester for about 4 months so that I could undergo the transplant. This was before Covid, so having my husband as a caregiver with our daughter filling in periodically, gave my husband a break. They could be with me all the time. An allogenic donor was found for me in May and the end of June my transplant took all of 20 minutes. It was very anticlimactic considering all that takes place beforehand! And all the anxiety from the Stem Cell Transplant looming out ahead of us beforehand!! The unknowns! The day after the Transplant I was ‘back home’ in our lodging. A hotel conveniently connected to the clinic. The usual post transplant exhaustion, recovery from the conditioning (chemo) with the nausea, sore mouth, and weakness. Thankfully I was spared any intestinal issues and really nothing else.

There have been a couple GvH issues. They were handled readily with medications. But truly, this has been a most remarkable journey and in 4 months it will be my 2nd Rebirth day! My husband, daughter and I can’t say enough about the absolutely stellar BMT teams at Mayo-Rochester and the collaborative interdepartmental team approach. During my 2 episodes of GvHD issues, besides my super-hero transplant doctor, we had specialists from a number of departments working on my case as well. The first being the need to call in a rheumatologist for severe tenosynovitis in both wrists.
The other, a bit more dramatic because who doesn’t want to be a drama queen??!! LOL. Christmas week. 2019 I spent in the hospital at Mayo having lost feeling from waist to toes. MRI showed inflammation on my spinal cord. Not being sure if it was GvHD or a return of the AML, a virus, etc., a lumbar puncture was ordered. A neurologist was on the spot to assess my damage. Since the inflammation was on my spine, hefty IV steroids were needed to cross the blood brain barrier. Well, that was a wild ride!! But within 2 days I was up and walking again unassisted. Better living through chemistry!! But that level vexed my liver so now a liver specialist was called in to address that issue. Anywhere else we’d have waited weeks for these consults! Their dedication to detail, the compassion and complete patient focus is unparalleled.

Now we just need to get past this pandemic so life can go forward without restrictions!! Though we were all ahead of the game with wearing masks before they became fashionable. LOL. Lori.

@edb1123 Hi Elaine, when you were diagnosed with pneumonia and respiratory failure was this precipitated by a cold or viral infection? Or was this a GvHD event? You had mentioned being on Prednisone. Since that’s generally how our GvHD issue are handled, it got me curious. It’s fantastic you’re feeling so much better and back to walking daily. Finally there’s hope on the horizon for the frigid air in both our states! Can’t wait to get longer walks outdoors! Lori.

Hi, Lori:

In mid-November, I developed a bad cough so I went to Urgent Care for a COVID test and chest X-ray. Both were negative so they gave me a nebulizer with Albuterol and a cough medication. About 4 days later, I got chills and a fever of 102.5, so I went to the ER at my local hospital and they found that I had early signs of pneumonia. They gave me antibiotics and sent me home. However, four days later I was very short of breath and weak, so I went back to the ER. They found fluid on my lungs and early pneumonia, so they admitted me. I told the doctor that my Mayo Oncologist wanted me to be transferred there, so I went by ambulance to the Mayo Clinic on Thanksgiving night.

The Mayo doctors were not able to determine if the pneumonia was caused by GVHD, but the bronchoscopy sample didn’t grow anything so apparently it wasn’t an infection. The steroids were supposed to reduce the inflammation in my lungs.

Thanks,
Elaine

I, also, am a proud patient of Mayo transplant (Jacksonville, Fl). I had a liver transplant November 2017. What a gift! The Mayo team at this location is everything you have written about your Mayo Rochester and I love the team approach! We have been May-naissed! Best of good health wished for you.
Toosie, Ponte Vedra Beach, Fl.

@corn50. Hi Toosie, Your response made me laugh. My husband and I are always joking about getting “extra Mayo’ and being
Mayo-naised. T-shirts in the future??? LOL. It’s great you’re doing so well! It truly is a gift, isn’t it...both the new transplant and having Mayo Clinic as our team. Continued good health to you! Lori.

Hi Lori! I am now 8 1/2 months post Auto SCT. I was diagnosed with Multiple Myeloma in June, 2019. My SCT was June 10, 2020, at Mayo-Jacksonville. My 1st SCT cas postponed in October, 2019, due to progression of MM in by multiple bone lesions. I was devastated, as we were getting everything lined up when I got the call. After 4 months of my second regime, also at Mayo per my insistance, my BMB and PET scan showed I was ready. My local primary physician agreed. I was more concerned due to the Covid pandemic. But could not have had a better experience that at Mayo. I had a rough 7 days, with weakness, nausea, and diarrhea, but the staff was there in a minute, with any problems I had.

I engrafted on day +12. My husband is my caregiver, and luckily he was allowed to visit from 12 pm until 8pm in hospital. I think this is as important as medicine, for the healing process.

We stayed in Jacksonville for 10 more days, and were released to come home 7/2. A gallbladder attack on 6/30 (my 1st and so far last), sent me to the ER. It resolved on its own. I had lingering gi issues for several months. I was blessed with a dedicated husband! He is my hero, and has made the journey so much easier! I have ongoing bone pain, and muscle spasms, with any activity. I still nap 3-4 days a week. The pandemic has made it rough, as my husband works. I really miss spending time with family and friends, and miss my Grandchildren, the most. I see them occasionally, but it is not the same! We got a new puppy in October, which has helped me tremendously! I am on maintenance chemo, of course, but at least no steroids with it for now! I am blessed to have been able to go to Mayo, which is 2 1/2 hours away. I too, have been Mayo-naised!

I am an RN, which makes it rougher to be a patient. But I am so impressed with the team approach, great communication skills, and organization that makes Mayo so great! Everyone at Mayo has been wonderful! I have a BMB scheduled for June 10th, so am waiting on this as patiently as possible!

@lisal64 Hi Lisa! It’s great to have you in the BMT/SCT discussion! Thank you for sharing your transplant story. There are so many underlying diseases that can warrant a SCT that we don’t always cross paths until the transplant. I thought it would be a great idea to bring us all together and would like to really build this group to discuss a wide array of the issues we face.

I read through the earlier posts of your diagnosis with Multiple Myeloma. Having a diagnosis out of the blue like that really pulls the rug right out from under, doesn’t it? Life changes in an instant. It sounds like you have a marvelous support system with your sweet husband and family! Did I see you have 12 grandchildren? What joy they bring to your family!! I’m sure it’s frustrating not to see them as often as you’d like. But knowing they’re waiting for Grandma is a driving force to keep going. Hopefully this virus gets under control soon so we can all resume some family time and ‘normal’ actives. I miss hugs!!

It’s wonderful you were able to have your treatments and SCT at Mayo and live so close. They really set the standard for health care. Being ‘Mayo-naised” spoils us for anywhere else. 🙂 Did you have a autologous transplant? So after your bone marrow was cleared with chemo you were able to use your own stem cells to replenish the marrow. It’s a plus that you could avoid any graft vs host issues. You mentioned being on maintenance chemo. How long will you remain on this regimen? If your BMX in June is clear will you be able to stop those meds?

I’m sorry you’re still having bone pain and muscle spasms when you’re active. Is there any physical therapy you can do to help ease your muscle spasms and speed recovery? Not knowing much about MM I quickly did a little reading and those symptoms are associated with the disease. Do your doctors feel these symptoms will subside over time now that you’ve had the transplant? And don’t feel bad about napping. The hardest thing I had to learn of the past 2 years was to “listen to your body” which was drilled into me over and over by my BMT team! LOL. If you’re tired, rest!! Not always easy for an RN, mom/grandmom. I’m sure you’re used to being active and non-stop. It’s ok to have life happen on your time now! Are you still working?

Having a new puppy in the house I’m sure keeps you plenty active! Hopefully soon enough your grandkids can join the mix.
Would love to visit more with you so pop in any time! Our rebirth days are 18 days apart in June! We can have virtual cake and high fives! LOL.
Wishing you continued health and a clean BMX!! Lori.

Thank you, Lori, for your sweet reply! I am glad we have our re-birthdays close together! And yes, between my husband and I, we have 12 Grandchildren, and now have our 1st Great Grandaughter! Our oldest Grand was able to visit with her last month, from California, for her 1st Birthday. We were thrilled! Both adults had to show negative Covid tests within 72 hrs of boarding plane, both to and from Georgia! But it was very special for us to finally meet our precious Great Grand! I double masked for her cake and small "party", and got some great pictures!
And I did have an Autologous SCT. I recieved injections for 4 days, to ramp up my stem cells. Then I had my own Stem Cells "harvested", in one day! (Enough for 2 transplants!). They freeze and keep half, in case I need a second SCT down the road. The process is similar to hemodialysis. These were frozen until transplant! I am so sorry others who have donor transplants, have to go through GVHD. But I have heard of many wonderful outcomes from these, as well! Wishing you the best on your own journey!
I have not been able to work since Cemo induction, July, 2019. I nursed on a busy med-surg unit for 9 years prior to diagnosis. Being only 54 at diagnosis, indeed pulled the rug out from under me! My local Hemotologist/Oncologist, said these words to me: "You have Multiple Myeloma. There is no cure. You will be on Chemo for the rest of your life." That was pretty much all I heard during that entire visit. I was an emotional mess for the first 6 months or so, especially after having progression of disease after the 1st , very rough, 4 months of treatment. But I have adjusted, finally. At this point, I am not sure if I will return to work, or not. It would be part time if at all.
As for the pain, my doctor thinks it may be an ongoing thing. But I have thought that PT may help me learn to strengthen muscles without causing fractures. I am to have a PET scan in April, locally, to check on my bone lesions. These lesions cause a very increased risk of pathological fractures, and compression fractures, even when a patient is in complete response (remission). I am currently in Very Good Partial Response.
(I have multiple lesions throughout my skeleton.) Thank you for mentioning PT!
The maintenance chemo will be ongoing for at least 2 years or more, as long as I remain in good response. If relapse occurs, I will begin another regime of chemo.
The puppy has been a lifesaver! I was so sad and down during the summer. He is so sweet and playful. And loves hugs and belly rubs! ❤ He keeps me moving, with multiple short walks every day. He follows me everywhere around the house! I can not wait to have the Grandchildren here with us like before the pandemic!
Thank you for starting this discussion! Some of the best information I have gotten, is from fellow warriors going through similar battles! It is also comforting to know one is not alone!