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

caregiverx2- 87 days down. Amazing, isn't it? Oh my. Every medication we come off of does feel good. Kidneys? I still have to drink over 100 oz. of water for my kidneys. My Dr. does not want me to kill my kidneys. The tremors I hope are a result of the tacro. That would be the best result.
The day i got home was the BEST day. My cat had passed away, but Home has made the nearly 4 months heaven. Build in exercise daily. Keep us posted.

Good morning! Well, now it’s day 88! I was off the computer yesterday so I didn’t see this! Wow, I can’t believe your husband is cruising up to date 100 pretty fast!

Aw, gosh, I know he’s been suffering with the hand tremors all along. That can be really common with the tacrolimus. Hopefully, as he tapers off that med, the tremors will dissipate. I looked back in my journal and once I began the taper, it didn’t take long before there was a noticeable relief. I was actually on low dose tacro for 2.5 years so I had a little tremor (not as disruptive) for that length of time.

I also had issues with my kidneys while on the tacro. From my understanding, it can reduce the blood flow through the kidneys which interferes with kidney function. After stopping the tacro that totally reversed itself too. It’s an important life saver med for us in early months of BMT, but obviously not without some pesky side effects. As @katgob mentioned, keeping up with a good volume of water daily can help keep the kidneys flushed.

Going home is the most amazing feeling. It was a 4.5 hour drive to home for us. The nearer we got to my city, the more the tears began to flow. Good thing I wasn’t driving! I was a blubbering mess by the time we hit our driveway. And then…my neighbors were all outside to greet us! Sniff sniff.
You get to click the Ruby Slippers 👠👠There’s no place like home! (I’m hoping you’ve seen the Wizard of Oz!) 😂
Thank you for the awesome update!

Hi Mary and Dane! It’s been over a month since we’ve chatted. Thought I’d pop in for an update! Hopefully all is going well with the A/V maintenance. Were the CBD gummies an option?

Hi Deb, I hope you’re coming out from the dark side of the moon by now. That’s what I considered the period between transplant and engraftment. 😅 Not sure what your age is but I grew up in the time of the moon landings and there was always that tenuous time when the spacecraft was on the back side of the moon and all communication was lost…then boom! You’re back on the sunshine side of life again.
Let me know how you’re doing! How’s the nausea?

Hi @loribmt !
Great to hear from you! Your positive energy always cheers me up as I follow your outreach threads to others like us.

Today is Day 159, and the completion of cycle 3 of the Aza/Ven monthly maintenance treatment. All his routine labs are stable and he has gained a couple pounds. He developed mouth thrush but it seems to be managed well with Nystatin mouth rinse. He is being tapered off Tacro and should be completely off by day 180.
The CBD gummies did not work for him, as they made him feel weird. The nausea worsens close to the week of maintenance therapy, so he has to take Reglan more during those weeks. He actually had been doing well without it for a couple weeks that he forgot to take it the first day of his treatment last cycle and that was a mistake. 🤦🏻‍♀️
We are learning how “experimental” the maintenance therapy phase is. Much remains a mystery about the best course of treatment following BMT for those with high risk AML. Studies are lacking for definitive treatment protocols and each cancer center has a unique approach. We are going with MD Anderson’s recommended dosage and duration of Aza/Ven and our Northwestern doctor has also weighed in and agrees. They recommend 2 years of this treatment, assuming clean biopsies along the way. That’s our next goal line and it feels far away. But hey, we are closing in on 6 months since BMT. I actually have to clarify with them if they mean he should receive these treatments until his 2 year BMT anniversary, or 2 years of maintenance treatment total. I also wonder about the cumulative effect of these drugs. But that’s anxiety I don’t need and can’t control.
We are hoping for a positive biopsy result in early December. 🙏
And…another hope we have is to get away to Florida in February. Our NW doc referred us to a doc at Moffitt Cancer Center where he could receive the outpatient treatment (5 consecutive days of IV Aza) and be able to enjoy the warmth and sunshine in a rental home we have reserved. We need the green light from his stem cell doc too, so we are making plans and holding hope.
I must thank God 40 times a day for another day. So even though we are allowing ourselves to look out into the future a little bit, it’s really today that counts. One at a time.

Hope you are feeling good and getting excited for the coming holidays.

Thanks for checking in Lori.

Hi Mary! Dare I tell you that I just got back from a 5 mile walk on the beach, wading through the surf the Gulf? 🤭

Dane will be at the basically the same point in his recovery as I was when my husband and I were finally able to get back on our winter schedule of following the birds to Florida. ☺️ My BMT nurse coordinator was awesome with setting up necessary infusions and blood draws with the local hospital near our condo! Seriously, it will do both of you a world of good to resume some normalcy! I hope his transplant doctor gives 2 thumbs up!!

That reminds me! I started a discussion a few years ago.
Snapshots of Hope! Life on the other side of transplant! https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

It would be awesome if you and Dane posted some pics there and shared a bit of life after transplant.

From my understanding, the A/V maintenance therapy is pretty well tolerated though of course all meds can have side effects or risks. But the greater risk is coming from the potential for AML to start kicking up trouble again! AML can be a tricky devil. What I learned is that some of the mutations that cause AML can allow cells to elude chemo by, basically going dormant or hiding out in the body, only to reemerge at a later time. That’s why, higher risk patients, even though they had a BMT, will undergo maintenance chemo to sweep the body monthly to pick up any cells that may be fixing to make a stink again! According to my transplant doctor and my local hematologist, these cells can be actively lurking’ for up to 22 months. I was told that if I went 22 months with no signs of cancer cells, that statistically the chance of relapse drops appreciably. So that times out with Dane’s doctor’s estimate of about 2 years.

Isn’t is just amazing how quickly the time flies by! And yet, some of those early days, it was counting minutes at a time, not days! But at day 159, you both have come a long way since we started chatting. And things will just progressively keep on improving.
I keep saying it…but it’s so appropriate. This is a marathon, not a sprint! The trauma we go through with a bone marrow transplant affects us mentally, physically and spiritually. Our lives and the life of our caregiver has been turned upside down!
We’re given a new life…but our new life comes at the cost of our old one. So there are months of adjustments, compromises, mourning for what we lost but also reveling in the fact that we have a life going forward!

Wishing you and your lovely family a Happy Thanksgiving. This one will be extra meaningful. Huge hug!