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

@lisal64
You have sure been through the ringer since this diagnosis. There’s never an easy way to deliver devastating news like that but there can be more delicate approaches! And you’re right, there are key phrases that just precede everything else in a conversation after the words are delivered! I remember the very off-hand/glib manner my GP told me I had leukemia on the phone. That’s in one of my previous posts. I’ll never forget her callousness.

That same night I was admitted to the hospital where the attending hematologist/oncologist sat holding my hand and telling my husband and me that AML was like a Texas Thunderstorm. One minute the sky is blue and it’s a perfect day. The next moment a storm billows up out of nowhere and all hell breaks loose with a twister! He very calmly and gently told us the statistical odds of survival after my husband asked, which weren’t favorable. Then he said we’re way ahead of ourselves on this! First we launch an all out attack. LOL. He and 4 other oncologists, along with bags of chemo, got me past that first hurdle and ready for the stem cell transplant months later. But his Texas Thunderstorm and kind manner stuck in my head.

I’m so happy for you that you’re in a good place right now with your treatment. I sure hope it keeps on working for you and that your biopsy is clear and PET scan shows improvement! I was thinking about exercises and PT to keep your pain down and bone strength up! Are you able to be in a pool? That might be a good source of gentle exercise for you to build strength and stamina without damaging bones. There’s quite a few websites regarding this. Maybe ask your doctor if this would be a good idea to help keep you mobile.

Aw, it’s so heartwarming you finally got the chance to meet your little great grand baby after a year! Photos don’t do justice to cuddling a new munchkin! Do most of your family live near you? Or are they scattered all over the country? This virus has us all keeping distance from our loved ones. Hopefully soon enough this gets under control so we can have some great reunions. Our daughter lives 5 hours from us, which isn’t far. But we’ve had to keep our distance for much too long. Video chats, texting and phone calls are great but they don’t replace a hug!

I’m envious of your puppy!! Dogs bring such joy to our lives, don’t they? Our Golden passed 4 years ago. That was devastating. We were finally about ready for another dog when the AML and all those shenanigans popped up. Timing wasn’t good. Now?? Maybe...we’ll see who finds us this time. LOL.

Time to go take on the day. Wishing you a stellar day! Hugs.

I'd like to invite @leukskywalker @jessica0 and @taybro4 into this discussion too.

@lisal64 @loribmt @edb1123, what would you like family and friends to understand better about SCT/BMT? Are there things we just don't "get"?

I think one of the hardest things to understand (for me too) is the graft vs. host disease. So many different symptoms can be related to this and can occur at any time.

@edb1123 While GvHD can be a bane to our existence, it is also an integral part of why we received the SCT in the first place. We need that internal battle brought on by the new immune system to attack the cancer that our old system could no longer recognize and control. Look at it more like, Graft vs Leukemia. Or Graft vs Tumor. Unfortunately in the early stages of our transplant the new immune system doesn’t differentiate. It looks at our entire body as an invader needing to be eradicated. That’s why initially we’re on the higher doses of immunosuppressants/anti rejection drugs. They act as an anti inflammatory drug to keep things calm. You’ve heard of the cytokine storm brought on by Covid 19? It’s the same thing when our bodies initially go into hyper drive with the new immune system. That’s why it’s imperative to keep our new immune cells quiet but working that first 100 days. We want them to work but not too aggressively.

My husband always teases me that it’s like a new guard dog sitting in front of me, just waiting for me to make a false move. As time goes one, at some point it will no longer see me as a threat and we’ll live an amicable life together. LOL.

My SCT was the end of June 2019. Until Oct that year I showed no sign of GvHD at all. I had one glimmer that the new system was working in August when CMV, a virus that was brought in with my new cells started showing up on blood tests. My doctor held off on giving me a stronger anti viral and just waited. By the next week, my new system had recognized its old foe and took it out! So that was pretty cool to know it was working.
I was feeling pretty cocky about not having any other issues until we began to realize that there was a bit of concern surrounding this. Was my immune system up and ready to fight for me in the event of a return of the AML? If it’s not reacting to any other stimuli would it be ready for invaders? Later in October my doctor started my taper off Tacrolimus and within 2 weeks I did start to have some issues with my hands and wrists. We were all honestly a bit relieved that there was some indication of activity. Though later on, the next GvHD battle was one of “be careful what you ask for” as my transplant doctor said when tackling this new round. But that was a year ago, it was handled and now I’m in a very steady period. I feel 100% normal!

After the first 100 days, we reach a period where any GvH that comes about is generally no longer considered Acute. Acute GvH can develop quickly and get out of control. Later in our transplants, most anything that happens comes on gradually and sometimes subtlety. That’s why it remains important to report in to your team any time something new creeps into the picture. Keep a little journal of new symptoms which arise. Sometimes a watch and wait then report... But we can’t live in fear of this as it is generally corrected quickly with steroids or other immunosuppressants to get life back under control.

We need to keep a sense of humor, sense of adventure and above all, a positive attitude.
I’m glad you brought this up! I hope others will chime in so we can keep this discussion going.

That was a great explanation and way of looking at GVHD! Thanks, Lori!

@waveg ~ Hi Gretchen. Thought I’d pop in for a little follow up to see how you’re doing? I hope all is going well with the transplant and recovery. It would be great to see you on this thread where I’m trying to grab the attention of fellow BMT/SCT patients so we can get some meaningful dialog going to discuss whatever’s on our minds and bodies. Life’s always an adventure isn’t it? How are you fairing during the pandemic? Is it too confining, do you feel depressed? Or are you like me where it gave me another year of a safety net before being exposed to people after the transplant? At least now everyone should be wearing a mask, not just us, right? LOL. Looking forward to hearing from you! Lori.

Hi Lori! All is going well for me. Life truly is an an adventure and never boring! I’ve been very fortunate for my care at the Mayo Clinic and my recovery from MDS. I’ve done very well and was discharged from the hospital almost one week early. I have had some graft vs host issues with liver function so they put me on prednisone and changed my doses on other meds. They went down significantly, however, the last labs were up a little. I hope it was just a blip. My marrow and CD33 are 100% donor and my CD3 is 80%. The doctors are ok with this and say the CD3 should increase in time.

I’m not far from Mayo Jacksonville so the weather has been good to me. Allowing outside activities and meeting friends outside during the pandemic. I can’t imagine having to be closed inside for the winter. It has been helpful that others are also being careful due to the pandemic and I’m not the only one out there wearing a mask.

My hair is coming back and is about 1/2 inch long and it can’t grow fast enough! I’m not sure how long I’ll stand the wigs. The weight loss has brought me to the weight I should be and I hope to stay there. So right now I’m walking and doing some strength exercises to help this along and get toned.

I haven’t felt depressed and look at my cup as 1/2 full and getting fuller all the time. I’ve had lots more energy. I was used to running on a hemoglobin of 7 and with it doubled now, it’s great!

Overall, my transplant was very easy and I’m so grateful. I had a few intermittent very sleepy days in the hospital and a few after I got home. My wonky lab results were asymptomatic so I didn’t feel any different. Once I’m off the tacrolimus, I should be able to get the Covid vaccine and I start my childhood vaccinations next week.

I hope others are doing well through their BMT/SCT. Thank you Lori for keeping the communication lines open.
Gretchen

@waveg Hi Gretchen! That’s great news! I’m so happy to hear the transplant was easy, your energy is back and life is returning to normal! Well, as normal as it can get with the pandemic hanging around. Yours is such a positive, encouraging story to share for others to see. I hope we can keep getting more of our SCT/BMT members joining.

Seems like the liver is a frequent target for gvhd and the meds are always being tweaked like little dials to get the balance just right. I’m still on a very low dose of tacro for the same reason. A little GvHD ‘gnawing around the edges’ as my husband likes to say. My doctor wants to hold on a little longer just to make sure it’s stabilized now before taking me fully off. My numbers have been getting better on the liver side of things but because of the tacrolimus, my kidney numbers are going in the other direction. LOL. Like I said, it’s tweaking here and there to keep both organs happy. What is your daily dose of tacrolimus right now? Have you been tapering off?

Hair at 1/2 inch? It’s time to liberate your head and show off that newly acquired crown! ( but wear a hat in the sun!) It really does feel like it takes forever to get started, doesn’t it? But then all of a sudden it takes off! Wonder if your texture or color will change. I had Christopher Walken hair for the longest time. It was hilarious but it was hair and it was growing! LOL. I had 2 wigs and honestly, I seldom wore them. I felt a little bad-ass with my new look! Fierce warrior. Now it’s just a shaggy mane needing a professional cut! Fortunately I’m not seen by many people so at this point it’s no head of shame.

Life is not boring for sure. With a SCT it’s best to keep a sense of humor and a sense of adventure.

I’m so happy you wrote, Gretchen. Will you keep tuned in to the site? It’s great to have fellow SCT/BMT members on board so we can get some good conversations going in the future with a larger group. I’m being optimistic. ☺️

All the best...Lori.

A little chuckle for the day.
I had my #2 Pfizer this morning. Talking with the intake nurse, she wished me good luck and said that it seems like women are tending to have a stronger reaction to the vaccine than men. So I told her that I’m in luck then! My immune system is male! The bewildered look on her face was priceless. 🙂

Hi Lori—I had my 2nd Pfizer dose on Thursday, after ear surgery for. Cholesteatoma on Tuesday. This one kinda kicked my tail. Fever has been hovering around 101.5 and feel generally unwell. Hope you are able to avoid that! Cute story btw