1. < Bone Marrow Transplant (BMT) & CAR-T Cell Therapy
Profile picture for andreak78

Experience with FluBu4 ?

Posted by andreak78 @andreak78, Jan 21 8:39am

Preparing for SCT/BMT in a couple of weeks at Barnes in St. Louis. I’ve had 3 rounds of Cytarabine and Rydapt leading up to transplant. Just anxious about a new to me chemo. Please share if you have used this therapy prior to SCT. TIA!

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

Profile picture for Lori, Volunteer Mentor
Mentor
Lori, Volunteer Mentor | @loribmt | Mar 10 9:15am
In reply to @andreak78 "@loribmt I was actually discharged the day you sent this! That was Day 17. The mouth..." + (show)
Profile picture for andreak78 @andreak78

@loribmt I was actually discharged the day you sent this! That was Day 17. The mouth and throat sores were terrible, but I made it through. Nausea, vomiting and diarrhea were harder than other chemo stints also. I had two additional doses of chemo on days 3 & 4. That is a good term- coming around the dark side of the moon. I lost my taste buds for several weeks and they're just now starting to return. Tomorrow I go in for labs, doctor visit, and infusion of abatacept for a study I'm in. And Friday (Day 31) is my first bone marrow biopsy since the transplant. Feeling hopeful, a little anxious but overwhelmingly happy to be recovering at home since Day 17!

Jump to this post

@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?

REPLY
1 reply
Profile picture for andreak78
andreak78 | @andreak78 | Mar 12 2:09pm
In reply to @loribmt "@andreak78 Good morning, Andrea! So happy to see this update and glad that you’re doing so..." + (show)
Profile picture for Lori, Volunteer Mentor @loribmt

@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?

Jump to this post

@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!

REPLY
Profile picture for katgob
katgob | @katgob | Mar 18 11:31pm

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.

REPLY
View MoreView Less
Please sign in or register to post a reply.