Experience with FluBu4 ?

@andreak78 Good morning, Andrea! So happy to see this update and glad that you’re doing so well in recovery. ☺️ The first two week period generally packs the hardest wollop. After that, recovery is a slow but steady pace. It takes time for the body to rebound and that recovery can’t be rushed. We all have our own pace. You may have days where you feel more energetic only to have the next two or three days where your butt is dragging again. That’s very normal. So, baby steps for the next several months. Most often by day 100 there is a shift in energy.

Of course, that first BMB post transplant is always a nail-biter moment waiting for results. And the full report usually takes several days so that prolongs the anxiety. 😅
I remember wanting to know, looking every day to see if results were in yet. But then when the report was finally posted, I didn’t want to look! LOL. My doctor called about 2 minutes after I got the notification so I didn’t have to wait long.
Wow, being able to go home at day 17? Do you live fairly close to the transplant center?

@loribmt My oncology team was quite surprised I was able to go home on day 17 also. We live 45 miles from the hospital, we can get there in an hour typically. I believe the rule is 100 miles or less and you're allowed to go home vs. a local apartment or hotel. Being home is priceless!

I just caught up on your posts. So much is the same with AML or MDS which is what i had. Same old delightful Melphalan. Cleans the marrow area so the new cells can set up shop. Lori told me the minions would be taking over with the new cells. During my chemo before Day 0, I was given ice cubes and popsicles for the whole hour of chemo. I did not get mouth sores. I did though, watch the minion show the whole hour of the chemo. I was in a research study to prevent GVHD and by God, none so far.
It is never the same for each of us. I got a 26-yr old donor's cells and i must say, like so many have said, 2 years in, i cannot believe i had a transplant. Lori is right in all she says.
I stayed at a friends house for 70 days. When i got home at 100 days. Priceless.

Hi @andreak78 I didn’t realize a couple of months have zipped by already since your transplant! I’m still amazed you were able to go home on day 17! How has recovery been progressing for you?

@loribmt Recovery was going so smoothly with minimal bumps in the road until a little GvHD in my guts showed up. I'm nearly weaned off steroids for that at the moment. My blood counts have fallen in the last several weeks and this week they were back to levels I had at day 30 (I'm day 121 now). I messaged my team again this week with concerns about my counts and they reduced my Tac. With counts falling I'm having issues with my heart rate being elevated at rest and spiking during tasks. I received a STR CD3 test interpretation today and the donor value has fallen to 84%. It was 95% in March and >95% in April. To say I'm concerned is an understatement. I guess I'm seeking some reassurance with this. Feeling a little scared.

Hi @andreak78 It’s good to hear from you! The first several months after a BMT, (actually the first year) can be a bit of a roller coaster ride with fluctuations with some blood numbers and possible flares of GVHD. Steroids can impact blood counts, lowering them. So you may see some increase in the blood counts as you wean off the steroids.

It’s certainly understandable to feel concern seeing the chimerism number decreasing. That’s the reason your team has decreased your tacro dosage. Let me explain. When we have the BMT, the goal is to have 100% engraftment from our donor. (0% recipient/100% donor). It doesn’t always happen that way but that’s the goal. When those numbers don’t reach 100% or start backsliding, doctors may adjust the tacro to a lower dosage so that more of a reaction with the new cells take place. Basically, allowing the newer aggressive, healthy cells to overtake the remaining old cells.

Tacrolimus is immunosuppressive agent that functions as an effective anti-inflammatory medication. Your new stem cells (the graft) are producing new blood cells. A great part of these become white blood cells whose job is to create a ‘force field’ against infections, viruses, or other invaders. Because they are comprising your new immune system, they are very aggressive by nature. And when they are introduced into a foreign body, such as yours (the host), they tend to want to launch a defensive attack against that huge organism! (GVHD). The tacro, being an immunosuppressant, holds those aggressive cells back a little, calms them down until the new adaptive immune system begins to recognize your body as friend, not foe! Eventually the cells and your body learn to play well together! ☺️
Initially, if the new cells are held back too much then there may be an opportunity for your old cells to start replicating. By reducing the level of Tacro, this allows for a more aggressive response from the new cells. Your doctors are hoping to see your chimerism climb with this reduction in tacro.

If that doesn’t work there are other options such as a DLI. That’s a donor leukocyte infusion. Healthy white blood cells from your donor would be infused into your blood as a boost. This is often done if there is a mixed chimerism of your old cells and donor cells.

Here’s a good article from Cleveland Clinic with how that works. https://my.clevelandclinic.org/health/treatments/10343-donor-leukocyte-infusion

When is your next set of labs/STR CD3 test? I’m sure you’ll be on pins and needles until you get that new reading. But these situations do happen and are usually readily taken care of.

Have you mentioned your heart rate changes to your BMT team?

@loribmt They reduced the Tac prior to this test result this week because I've complained about falling counts, fatigue and HR. They've been aware of the HR for several weeks now, as soon as it happened actually. I've seen an oncology cardiologist (who wasn't really concerned), EKG and holter monitor for 3 days and had a PFT this week to compare to the one conducted pre-BMT and to ensure it wasn't a respiratory issue.
Thank you for the article, I'll definitely read it! The most frustrating part of being so connected in our current world with technology is receiving test results via MyChart and then having to wait for your next appointment for explanation. I almost wish I didn't know this until next Tuesday. I'm sure I'll find out then when my next lab is to check STR CD3. I have a list of questions already on my phone!

@andreak78 Oh I know what you mean about MyChart! It’s almost impossible not to be lured into sneaking a peek at the results before your appointment.
Hopefully the lowering of the tacro helps with your current symptoms but also aids in boosting your chimerism. Little tweaks can go a long way.
Try to stay away from Dr Google this weekend and just wait for your consult on Tuesday. Love that you have your questions at the ready! Will you let me know what you find out, please? ☺️

@loribmt So sorry, didn't realize I dropped off the conversation. Work and life got really busy. The whole STR CD3 thing was brushed off by my doctor as no concern. I'm completely off Tac as of last week and doing well so far. Last BM biopsy (180 day) showed no blasts, no genetic mutation and fully engrafted donor cells. But wait, there's more... Now we're watching some donor-derived variants: DNMT3A R882C (2.67%) and ASXL1 A316E (49.79%)
Doc stated there's no reason to worry now but we have to keep an eye on things. So we'll wait for the 1 year biopsy to observe any increase in the numbers. My list of questions at one year BM biopsy will be at what number are we starting to get concerned and discuss additional treatment. For now, we're living each day as best we can. I still get weekly arm draws and see my oncology team every 2-3 weeks. I'm back to work FT, youngest child keeps me hopping with volleyball & FFA, and we took a vacation this summer. Life is good!