Experience with FluBu4 ?

Hi @andreak78. I’m so glad you’ve joined Connect… you’re not alone in your journey! If you’re receiving Cytarabine and Rydapt, I’m assuming you have AML with an FLT3 mutation. At exactly this point 7 years ago, I was just beginning my AML/BMT odyssey for the same reason, along with 2 other mutations. I also received cytarabine, Rydapt and idarubicin which brought me into a temporary remission until I could go ahead with the allogeneic transplant. Without it, I’d have been pushing up daisies from the underside for at least 6 years by now. ☺️

The preconditioning chemo the week preceding your transplant will be short-lived but a little more aggressive in an effort to make one final sweep of your bone marrow to clear any cancer cells and it will also clear your lymph system. This will ensure a squeaky clean environment for the donor stem cells to set up housekeeping, restoring your now defective immune system with a whole new setup! You’ll be Andrea 2.0.

The side effects are similar to what you’ve already gone through though the fatigue for a few weeks might be deeper than the previous neutropenic lows you’ve felt. There may also be more of your favorite nausea, hair loss, possible mouth sores. I know!! It sounds dreadful but you’ll move past this! Once the new stem cells engraft and begin churning out new blood cells, especially neutrophils, you’ll begin to feel improvements and should steadily regain strength.

There are quite a few BMT discussions here already. You might want to join in this one which I started a few years ago.

My BMT Story: Will you share yours:
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
Each of us has our unique experience with the procedure and recovery. There have also been huge leaps forward in prevention of some of the more serious side effects since I had my transplant almost 7 years ago…rebirthday is then end of June.

I know this can all feel overwhelming so if there is any information you need, about what to expect, or need a shoulder to commiserate, I’m here along with, what I affectionately refer to as my BMT posse members, to offer a lifeline! Will you be an in-patient for the first few weeks?

@loribmt Thanks for the welcome! Yes, I'm AML with FLT 3 genetic mutation. I had bone marrow biopsy #5 yesterday and got a lot of details regarding transplant from my team. I'm growing quite anxious! I just want everyone in our house to stay healthy and my brother (donor) to stay healthy as well. It's been 3 months getting to this point and I'm so ready for the next step toward healing/recovery to begin! I've been shaving what little hair I have because I assumed the pre-SCT chemo would wipe it out again. So, thanks for mentioning that. I figured fatigue would be another one. I try to walk the hallways and move about my room when in hospital. We're anticipating a 4-6 week stay in-patient.

@andreak78. You’re doing everything right! Learning what you can, but don’t overload. Your BMT will guide you along. My doctor made it a point of telling me that my only job was to focus on recovery. To ‘leave the worrying to him and his team.” And I did! I never lost a night’s sleep from worry.

I know from experience that anxiety builds when thinking about the logistics of all of this, realizing how many little duckies have to line up perfectly! But things do all seem to just fall into place and move forward. Once you’re in the hospital, at least for me, the anxiety melted.

If you can, encourage your brother and family members that are around you to mask up in order to stay healthy to protect you! Basically following Covid protocol so that your brother can fulfill his donation and that you can get on with the BMT!
And yes, sadly hair loss is to be expected around day 10 post BMT. My little stubbies that had been about 1/4 inch, all said goodbye overnight in a mass exodus…for what I hoped was the 4th and final time! And it was! The first little fuzz started reappearing around the 100 day point and went gloriously from there. Though I have to admit, I was loving the ease and confidence of the cue ball look!

If you don’t mind sharing, what’s your timeline for the BMT? When’s your pre-flight testing and the scheduled re-birthday?

Transplant/ Day 0 is Feb. 10th. I’m going in Feb. 3rd to prep and start FluBu4. I’ve done all pre-tests that I can at this point I believe (pulmonary, echos, ekgs, etc.)

@andreak78 With the pre-testing out of the way it looks like you are all set then for the biggest adventure of your life. Having had AML myself, I know what you’ve already been through and the thought of having more chemo pre transplant isn’t on the list of fun things to do! The FluBu4 will be similar to the FluMel that I had (5 days of fludarabine-2 days melphalan concurrent). It’s subtly more intense than what you’re used. (Can’t believe I actually wrote that…like we get used to chemo. But you know what I mean.) Anyway, the chemo will clear a pathway for successful transplant. So hang in there!
I’ll be popping in from time to time to see how you’re doing. But please don’t hesitate to join conversations or give progress reports! We’re here for you.

@andreak78
I’ve been in your shoes, the same as Lori. Keep your eyes on the prize. I’m coming up on 3 years post transplant. In some ways my new life is better than the first because I relish every day and have such gratitude. I’m back to climbing mountains and enjoying a new grandson. You can do this. If you ever saw the original Wizard of Oz, it’s like when it changes from black and white to being in color! A beautiful life is waiting for you up ahead.

@andreak78 there is a lot of wisdom and experience in the previous comments from @loribmt and @g4c. I too had a SCT at Barnes in St. Louis. I celebrated my 1st re-birth day on January 23.

You will have many days that challenge you but stay focused on what matters and remain as active as you can.

The nurses on 8,9 and 10 at Siteman are second to none. Dr. Patel is my favorite. He was very helpful to me and active in my recovery.

Good luck to you. The other side is a good place.

Hi @andreak78. Thinking of you this morning. Tomorrow’s the big day to start the next chapter of your life with the BMT journey, so I can appreciate the mixed bag of emotions you’re most likely experiencing today.

You’ll get through this just like you did those months of dealing with the AML chemo and Rydapt…one day at a time. But those treatments could only take you so far. Having transplant should help ‘seal the deal.
You have a bunch of us BMT members following along on your Team Andrea journey, along with your brother, who is your donor! How cool is that! 🥰 Sending an air hug!

So when you feel up to it, will you please keep us updated?

My husband will be three years post transplant Feb 15 and he says he would do it all again to have been given this new opportunity at a second life. Take each day as it comes and positive vibes coming your way. You got this. No it isn’t always a bed of roses but again long term is the prize. 🙏

Wow,@jrwilli1! It will be three years on Feb 15th that your husband had his BMT? Crazy how quickly time flies! I know he (and of course you as caregiver) had some rough patches to go through…but we earn our opportunity for the 2nd chance at life. That sometimes arduous journey makes us appreciate every day as a gift! 🥰
Please wish him a Happy Re-birth day (or Cell-ebration day) for me! Hugs!