Started the 1st 100 days of life as a SCT patient: Grateful

Good morning, @janetlen Phew…well, this is indeed an epic journey you’re about to take. As a veteran, you’re no stranger to taking charge and facing a challenge head on! This new mission is no different. The timing with Day Zero being Veteran’s day will be highly symbolic for you.
Congratulations on securing a donor. It is truly a gift of life from these wonderfully generous, anonymous strangers! My donor was a 20 year old male from the US. His cells, 6+ years ago, have given me an amazing 2nd chance at life. I wish the same for you as you start the countdown.

Tell me a little more about how your SCT is taking place…are you being treated as an in-patient with several weeks in a hospital before being released to convalesce nearby? Or as an out-patient?

@loribmt I am an inpatient at Uchealth (Anschutz) in Aurora, CO, which is also an MDS Center of Excellence. Once engraftment happens, I will move to Brent's Place, a non-profit providing housing to both children and adults who face life threatening diseases like mine.
I can't even find words to express the gratitude I have for the young man who is donating stem cells to me. I will try to live a life worthy of his gift. Most of all, I will try to live a life worthy of God's gift of more time. I asked for healing, and I believe I will be healed.

Good morning, @janetlen. If my reckoning is correct, this will be your last day of pre-conditioning. How are you feeling?

I am tired but otherwise good. I still have chemo tonight and tomorrow. Zero day is Tuesday.

Zero Day today! Still a little groggy from the change in chemo. Looking forward to the new cells around 1 pm mountain time. The stem cell transplant process is remarkable!

Hi @janetlen! Happy Re-birthday! With all the logistics and anticipation you go through prior to the stem cell transplant it’s pretty anticlimactic isn’t it?

@loribmt
The infusion of cells was what I expected. Short and sweet. The transplant as a whole will be the rest of my life with the next few months being the toughest from what I understand.

@janetlen Generally, the first 2-3 weeks after transplant are the most note-worthy. Starting a few days after the infusion the side effects from the preconditioning chemo become noticeable with increasing fatigue, possible nausea/digestive tract issues, possible mouth sores and hair loss starts around day 10. Sounds delightful, huh. Hang on, it’s temporary. 😉Once those new cells engraft, they begin to set up housekeeping. The first sign of neutrophils can bring relief to the worst of the symptoms. Slowly but steadily things improve with lessening fatigue, more stamina. But you can’t rush any of this. Listen to your body and rest, rest, rest!

As the title of your discussion suggests, the first 100 days of a new BMT patient are the most critical. Because the newly implanted stem cells are developing into your new immune system, there is a huge amount of adaptation required by those new cells. The new immune system is aggressive and referred to as the graft. Your body, the host, is just the vessel for these new cells and is a foreign environment. As any good immune system should, it will seek out potentially harmful entities and launch an attack. Well, unfortunately that would be your body! Graft vs host disease, which can be a big problem if not caught early in those first 100 days. After that time, anything that pops up is usually not an acute situation and comes on gradually.

So initially the new immune system has to be held back a little. That’s where meds such as tacrolimus come into play. It’s a strong anti-inflammatory drug that acts as an anti-rejection med, basically restraining the immune system until it can learn to adapt to the newly discovered proteins in your body. Over time, usually about 3+ months or so, it tends to simmer down. Hence the 100 days… About that time, your doctor will start the taper off the Tacro. It can take some people longer than others. I was on tacro for 2.5 years before those overly zealous cells decided to play well together with my body! LOL. But that was no biggie. I felt fabulous, healthy and no AML!
So for now, eat as healthy as you can, drink plenty of water and try to walk around as much as you’re able. I know you’re not one to sit idle and you’re very disciplined…I’m the same! So don’t be discouraged if you feel like doing nothing more than sleep the next couple of weeks. It’s not a sign of weakness…it can’t be helped! You’ll be up and active again in no time, with a 2nd chance at a new life. ☺️

@janetlen
Hi Janet, just checking in to see how you’re coming along. You’re at Day +7 and usually the next week or two extreme fatigue will be your companion. Hang in there, my friend. It gets better. Sending a gentle hug.

Thanks Lori. I have been living with fatigue for years, but yes, it is probably worse. I am not loving the diarrhea. The drugs I am taking reduce the frequency but apparently the diarrhea itself will not go away for some time. I brought a bunch of clothing with me but my clothing requires an IV disconnect/reconnect. Each d/r is a risk for infection. So, the hospital gowns are the better choice and one I would reconsider when packing. I am also having problems eating. Odors and taste are preventing me from eating large amounts. I am trying to eat more small meals. I can endure all the symptoms/side effects while waiting for engraftment.