[Rea]

@marmab my regime:
Day -5: Fludarabine (1/2 hr)
Day -4: Fludarabine (1/2 hr), Rabbit ATG (6hrs - for the first day, if a patient handled it well they can do it in 4. I wanted to be cautious so I requested all of my ATG infusions to be done over 6 hours).
Day -3: Rabbit ATG (6hrs), Cytoxan (2hrs)
Day -2: Fludarabine (1/2 hr), Rabbit ATG (6hrs), Cytoxan (2hrs), start 24 IV of Tacrolimus*
Day -1: Total Body Radiation (I think it was like 20 min on each side? For all my detailed notes, I can't seem to find this information.)
Day 0: Marrow Infusion (donor cells were frozen)
Day +1, +3, +6, +11 (4 doses/days): Methotrexate IV (ab 1hr). This can cause bad mouth sores, and if a patient does not handle it well not all four doses are given. I had no mouth sores and was able to receive all four doses. I kept to the dental routine prescribed (a solution, biotene mouthwash & brushing 4x/day), which supposedly helps.

Note: there were other medications along with the chemos for various reasons: Mesna IV (24hrs) to help flush kidneys. Steroid IV, anti-nausea meds, allergy (had a mucous mouth/congestion, once I was given zyrtec it was much better), etc…

*Tacrolimus:
I hated being tethered to the IV pole 24/7, so they switched me (day +8) to the Tacro pills earlier than usual. They thought it would only be a short reprieve, expecting a fever, in which I would have to return to the IV 24/7. I didn't end up with one though and I was so happy! (I had one fever on a chemo day, but not after I got the marrow).

I (mostly my kidneys) did not handle the Tacro well and eventually (day +84) I was transferred to Cyclopsorine. Like many others I get Migraines and High Blood Pressure with Cyclo, but I'm handling it better than I was the Tacro.

They told me people do better if they get up and walk. This was really difficult for me, but I did it, mostly because they said it helped keep fevers away…I walked 3-5 laps around the nurses station, at least 3x/day. I also owe my family for that. My mom, dad and sister came in turns and I walked with each of them. The rotation and routine really helped.

I'm sorry, I'm the least concise person ever.

My numbers were slow to come up, about day +16 to +20, was released from hospital day +22 (they said AA patients take longer than cancer patients in addition to receiving bone marrow over stem cells). Though once they did my engraftment happened quickly. I was 100% donor at +29 and have remained since.

I went in with an elevated liver, and it increased even more (ALT up to 400, AST 200) but eventually came down. They are mostly normal now unless I take anything with Acetaminophen (Tylenol) they elevate just above normal.

I think following all the extra stuff made a difference: walking, anti-bacterial wipes after shower, using the breathing device, eating, etc….at first sometimes I could only eat a cracker with peanut butter, but it was something. None of these are guarantees, but they seemed to help me.

It was very taxing on me mentally and still is sometimes. I brought books, movies, an iPad, Macbook, iPhone, cards, puzzles, podcasts, music, etc…personally none of those appealed to me. I actually disliked looking at screens and reading for a long time. Some friends gave me two coloring books and crayons and it was the best present ever. They were the easy kind with little detail. I had brought stationary with me too. So coloring, sending the pictures and hand written cards to loved ones was the only thing I enjoyed, and it kept me busy. Everyone is different, but finding something to keep the mind stimulated/occupied I think would help anyone.

@dfantle
Congrats!!! I'm so happy to hear that. I can't believe it's going to be a year either. Especially going back and looking through my notes. I also am looking forward to knowing more about my donor. I sometimes have a difficult time really absorbing that all this happened.