UW Clinical Trial - Visit 4 on Monday

Yesterday, the nurse from the UW clinical trial called to ask me to show up at 7:15am so they can draw blood for lab tests, instead of 8am.

Then, this afternoon, I talked to the nurse at Radiology, who gave me some instructions to follow prior to the insertion of the catheter. I can't eat anything 6 hours prior to the procedure - so nothing after 2am. I can't drink anything except clear fluids - and maybe nothing for two hours prior to the procedure. Yikes!

They need to use a catheter to withdraw my Herminator-2 cells. They will be using a "double-lumen" catheter, which will allow blood to be removed from one tube, where it will go through a machine where they separate out the white, t-cells (AKA Herminator-2 cells), and then they will return my red blood cells and platelets through the other tube. This is a process called "leukapheresis". The insertion of the catheter for this purpose may take as little time as 30 minutes and maybe up to 90 minutes.

Then, leukapheresis may take 2-4 hours.

Then, they remove my catheter. After removal of the catheter, I will need to go to a hospital room for four hours to make sure that I am not bleeding any longer through the hole created from the catheter.

I thought that I would be able to go home almost immediately after leukapheresis. I guess not.

So, after about eight phone calls, we (my sis and I) will be staying another night in Seattle. Luckily, my sis was available. Then to try to get the hotel we have for another night, but I couldn't get a free (complimentary) room through the American Cancer Society because I didn't give them five days notice. I originally thought we would just stay in the same hotel that we will stay in on Sunday the 9th (the Watertown), but the room rate was $139 and when I called one of the discounted places that the ACS knows of, I opted to stay at the Collegean, two blocks from the original hotel, for a price of $71 (including tax). The manager, Sherry, was very nice and friendly. I guess the Collegean is operated through the UW Medical Center and is used primarily for patient visits. They even allow stays of a month or more.

I was tired after that. But I still managed to give comments to NSF's next Strategic Plan.

My parents and I are listening to my son play Mario Party 7. He has a running commentary about the action he and the other characters are doing. It's funny! And, cute. Have a great evening!

UW Clinical Trial - Visit 3

Overall, I'd have to say that Visit #3 was uneventful. Dr. C came into my room and asked me what side effects I have the previous week. I mentioned that I had some fatigue, but that it didn't seem as bad. The cold sore was healing. It seemed that I was fighting a sore throat here and there. The vaccination site began to itch about two days after the vaccine.

I told him that a couple of days after I received vaccine #2, I saw my acupuncturist and she gave me a new herb that helps with energy and I think it was working. Dr. C seems skeptical of herbs, but I think he figures if it makes me happy, he won't say anything.

All in all, last week, I had relatively mild side effects.

Dr. C is loosening up - it was good to see him joke around with the patient from last week, so that gave me the go-ahead to joke, too. I told him a boob joke. Heather also told them about the song she composed about Xeloda. I also told Dr. C another boob joke - about a man who was looking for bras for his wife at Victoria's Secret.

I mentioned the study that was cited in the Wikipedia article on cancer immunotherapy. Dr. C explained that that doctor had used both CF4 (killer cells) and CF8 (helper) t-cells to accomplish the disappearing of the tumors in the melanoma patient. He also said that it was his research group who thought that both the CF4 and CF8 cells should be used, but the doctor cited in the article only used the CF8 cells for a long time; then he finally added CF4 and got the great results. (There some politics there, to be sure, between the UW tumor vaccine group and the Fred Hutchinson group. From the perspective of a patient, such politics and competition is silly because patient's lives are at stake. We don't need the egos of these doctors. Why can't they collaborate and work together for our sake? Unfortunately, I know that, in the world of funding, the money goes to the person who out-competes others in terms of results. Yes, I know it can lead to innovation. But at what cost to patients? Okay - that's my soapbox for the day.)

I met the study coordinator, N, who was the person I'd been working with to schedule the visits, fill out the forms, get American Cancer Society lodging help.

The nurse, R, gave me the vaccines. We didn't have to wait as long as the week before for the pharmacy to send them up to the clinic. I was given the shot almost an hour after I got there. (The week before, it was 90 minutes later.) The vaccination site itched almost immediately and for a couple of days; now it seems to be healing.

Then, it was waiting for an hour to make sure I didn't have any allergic reactions. No problemo!

All in all, an uneventful visit. Had a great time with Heather on the way up. We colored mandalas while we waited. Then, we went to the cafeteria, got some snacks and hit the road. In Olympia, we stopped for a quick lunch. We wanted to go to Powell's (she had never been). We were pretty tired, though, since we'd been up since midnight the night before. So, we didn't stay long. But we visited with a friend, who met us there. I think I was home by about 6pm. And, my folks had dinner waiting for me.

I'd have to say that I like the staff for this study. Dr. C seems friendlier, more relaxed now. D., the nurse, was taking an extra day off, but she's super nice. N., the study coordinator, is very friendly and helpful. The nurses, R., E., and P., are also quite friendly.

I get leukapheresis at my next visit. I will have to have a catheter inserted into my neck. I have these visions of looking like Frankenstein. But they say that it won't be too much more different than having an IV. It is a 4-hour procedure, though. Next time, my sister is taking me up. Yay!