I just had a nice lunch with Brian. His hospital-issued food was roast beef, mashed potatoes and peas and a slice of chocolate cake. He still has a good appetite and ate most of it. The nurse dropped by and said that his blood sugar level was high (300+ when it’s supposed to be around 90 something) and that was because of the Decadron. Decadron is an anti-nausea medicine and a steroid so that will make his blood sugar go up. They gave him a shot of insulin and they’ll check his blood three times a day. Once he stops the Decadron (when chemo is over), his blood sugar will go back to normal. He still feels good although pretty worn out.
We finally got to meet again with the Stem Cell Transplant coordinator. She gave us a big calendar with what will be happening over the next month or so. Yikes. All of the definite dates will depend on his blood counts at any given time, but in general it looks like he’ll get the current chemo until Monday night (4/3) and then he’ll start getting 2 shots of Neupogen a day starting on 4/5 for about 6 days. If his insurance allows it, I may be able to give him those shots at home. He’ll have to get blood work done on 4/6 to see if he’ll need a blood or platelet transfusion. At that point after chemo his blood counts will have bottomed out and there is a good chance he’ll need a transfusion. Depending on his counts, he may have to get blood work done over the weekend as well.
On 4/6 he’ll also go to the apheresis lab and have them check his veins to see if they’re accessible for the stem cell harvest or if they’ll have to put another catheter into his chest. Regardless of whether he needs a catheter or not, he’ll probably start collecting his stem cells on 4/11. This can take anywhere from 1 to 6 days and each day is several hours hooked up to the machine.
Once they’ve collected enough stem cells, they’ll do another PET scan. This is to see if this chemo that he’s doing right now is killing the cancer. If they’re not happy with the results, he may have to do another week of chemo just like he’s doing now. If the tumor has shrunk or disappeared, he’s ready for the high dose chemo called “BEAM”. This chemo will take about 6 days and will be a combination of being in the clinic and at home. I think she said if he’s home, a visiting nurse will administer the chemo to him. I’m not sure how this will work yet, but home is good.
The beginning of the high dose chemo is called “day -6” because it is 6 days before the day his stem cells are given back to him. The day he gets the stem cells back is called “day 0” and each day after that is “day +1, day +2, etc”. Oncologists are clever, huh?
Starting on Day +2, he’ll have to be close to the hospital in case he gets a fever or something. Since he’ll basically have no immune system, it’s not good if he gets a fever and will have to get IV antibiotics immediately and be admitted into the hospital. To make this easy on us, they will put us up in the Marriott Long Wharf which is about 5 minutes from the hospital. There is a foundation who pays for the hotel for us. Cool.
This part of the procedure may take as long as 12 days. This is when his blood counts should start to recover and he will no longer need to be so close to the hospital.
We don’t know and they don’t know how much he’ll be able to work throughout this whole thing or if he’ll be asleep for most of it or what. That part we just have to play by ear and I can’t stand uncertainty.
Ugh.
More later after my evening visit.