Wednesday, April 7, 2010

UW Clinical Trial - Visit 1

I apologize for being MIA here on the blog. It was a busy couple of days up north in Seattle, then I have had fatigue again. I'm tired tonight although I had okay energy earlier in the day. In another post, I'll talk about our visit with friends and family, but here, I'll focus on the clinical trial.

So, I will write here about some of my impressions of the trial. I'll give you a general outline for my visit:

1) Informed Consent process with Q&A
2) History and physical
3) Blood Draw
4) Tetanus vaccine and Her-2 vaccine
5) Wait to see if I have any adverse reactions

I went to the UW Medical Center, where there is a floor dedicated just to clinical research. I met a couple of the nurses - who were great, BTW - and settled in to my room. Mom was with me. Dad took Eddie to Seattle Center. One of the physicians came into my room and we went over the Informed Consent Form. I asked several questions and he answered them. I was particularly interested in what they see the benefits of this trial are to breast cancer patients. The doctor, Dr. C., answered, "Well, you won't be cured of cancer." Then he explained (and this is a paraphrase) that patients on this clinical trial tend to become more sensitive to Herceptin and to chemotherapy - that the vaccine and subsequent t-cell infusions respond better to these treatments. I also asked him why one of the study questions was, "What is the maximum safe dose for t-cell infusions?" and he said that in ten years of doing these kinds of trials, they have not seen anyone have any bad reactions (such as an auto-immune disorder) arise from getting billions of their t-cells back. The reason why this is of concern is that the vaccine I'm getting is for Her-2 positive cells: all human cells express Her-2 (it's a growth factor) and some use it pretty heavily (like your heart), so they're concerned that if they train my t-cells to attack cells that overexpress Her-2 (like my cancer) using the vaccine and then clone my t-cells (make billions of them), there is the potential that the t-cells will also attack all my other normal cells since they have a bit of Her-2. However, as I said, after ten years of doing trials, they haven't seen any adverse reactions. So, I signed the consent forms and am now an official patient in a clinical trial for breast cancer.

He then asked me to report on my cancer history, so I went through the whole convoluted and complex history. There was a time or two when Dr. C was impatient and cut me off and asked me to elaborate on another matter. I didn't get mad - I've been doing what anthropologists call "participant observation" where I'm participating but also mentally standing back and observing interactions to see what happens. I wasn't surprised when this white male doc was impatient. I plan to address it the next time I see it, because after all, these patients are doing him a favor and it would be better if he listened patiently. He fiddled with his pen and once, I think I saw him roll his eyes. I also tried to explain my theory about the memory foam mattresses and how the one I bought a few years ago might have contributed to my cancer relapse. But he discounted it: "Well, it's unusual that mattresses cause cancer!" I beg to differ, but that's the subject of another post.

After he did a physical exam, the nurse tried to find a vein to do a blood draw - no luck on the first try, but another male nurse came in and found a good, but deep, one in my elbow. They took about a pint of blood. The male nurse, P., was very nice, and gentle. I hope I get him next time I need a blood draw.

Then, I got the tetanus vaccine in my left thigh - ouch, but it wasn't too bad. Then, the nurse, E., gave me the vaccine - in a series of three shots in my upper arm. I then had to hang around and wait for an hour to make sure I was okay. I was there about 4 1/2 hours, since I arrived somewhat early.

Some general thoughts I had as I waited throughout the visit:
- they need to redesign patient hospital rooms; when the bed is elevated, you can't reach the little shelf which is on the wall behind you which might have your drink or whatever. Hmmm . . . sorta thinking about an idea for research . ..
- while not mad, I was irritated with the doctor when he was impatient and when he didn't listen to my whole theory about the memory foam mattress
- I decided I was officially a human pin cushion - I had a total of six needle pokes that day

I was okay for awhile, as we drove home, but then I got pretty tired and fell asleep for a bit in the car. About five hours after the tetanus shot, my left thigh was achey. My fatigue stuck around through Tuesday - and may stick around for awhile longer. It'll take my body about 2 weeks to regenerate red blood cells after the blood draw. I felt a little more normal today - but started fading after Eddie and I got home from school.

I will leave you with this little news item from a Wikipedia article about cancer immunotherapy:

"In June 2008, it was announced that US doctors from the Clinical Research Division led by Cassian Yee at Fred Hutchinson Cancer Research Center in Seattle have for the first time successfully treated a skin cancer patient by using immune cells cloned from his own immune system which were then re-injected into him. The patient, who was suffering from advanced skin cancer, was free from tumours within eight weeks of being injected with billions of his own immune cells in the first case of its kind. Experts say that this case could be a landmark in the treatment of cancer in general. Larger trials are now under way."

I say, "Go vaccine! Go t-cells!"


Joanna said...

I say "Go Dee!"

Jill said...

hi dee, jill here. got your message about the uw trial for imiquimod/abraxane and i don't think i will qualify - no chest wall disease that i know of. but i REALLY appreciate the lead. please get in touch the next time you're in going to be seattle -- i'd love to meet you.