When Dr. G and Darren and nurse Karen came into the exam room, I felt relief, even before they said a word. There was something about meeting with a "stranger" last week that multiplied my disappointment and discouragement. I'm sure Dr. K is a good doctor, but he hasn't been my advocate and defender and director for the past 2 1/2 years. When Dr. G talks to me, I feel his hope and unending support for me and I trust him completely to tell me the truth, the whole truth, and nothing but the truth, with no sugar coating. So when he said, very simply and without beating around the bush, that I still did NOT qualify for the study, there was only the slightest twinge of regret - because he immediately started to outline what we were going to do next and why we were finished with the stress of trying to qualify. It was awesome.
He explained that the platelet & white blood cell counts were still too low, and when (out of mere curiosity) I asked him what the exact number of platelets were, he pulled up a cool graph of my blood test results for the past 15 months on the computer (since right before the big Whipple surgery in May 2012). Just before the Whipple, the platelet & white blood cell counts were pretty normal, high peaks on the left side of the graph. Immediately following the surgery, the graph line dipped clear to the bottom in nearly every test! Following the line through the past 15 months, it never lifted more than a slight peak or two, but always stayed near the bottom of the graph. My platelet count last Monday was 97,000; on Tuesday, it was 89,000 (normal is 150,000-plus). Today's test was 93,000, so it had gone up a bit (spinach & walks around the neighborhood?), but Dr. G explained that it would never - never! - be normal again, because of my surgery and as long as I have this "chronic illness", cancer. There wasn't anything I could do to make them high enough and I wasn't doing anything wrong to make them so low. Why didn't anyone ever tell me that before? He also said that because my white blood cell counts are so low and will remain low, he did not feel comfortable going ahead with standard chemo. He said my marrow (which helps the blood counts) is very "quiet" right now, although my recent bone marrow biopsy results were normal. So, to help "wake it up", he had a Plan - of course!
Since I did have a pretty good response to IPI (ipiluminab - a less toxic chemotherapy) earlier this year, especially with the tumors in my liver, Dr. G wanted to do another cycle of IPI, but he wanted to combine it with radiation on the "walnut" and "kiwi" tumors I have. The combination of the two treatments should act like a "vaccine" - as my body and immune system recognizes the "dead tumor" cells that the radiation will create, the IPI should kick it up a notch (along with waking up the marrow) and be more effective on any other cancer cells in my body. I really can't believe I'm saying this, but I'm thrilled. It just makes sense and I have a great feeling of hope that it will work wonderfully. How soon can we start? Turns out I have an appointment for my first IPI infusion this coming Friday, August 23! Again, I can't believe I'm excited (maybe that's not the right word!) to have poisons pumped through my veins again, but it feels like this study business has taken way too much time and things need to start moving forward. Happily, I'll also be going back to the Utah Cancer Center and Dr. Avizonis (I've forgotten how to spell it!), who did the radiation on my neck way back in the beginning of my journey. Dr. G said it's good to go back to the doctor who first treated me & that he's in contact with Dr. A on a regular basis. I'm even more grateful (yes, that's a better way to describe it) to be starting this treatment on the tumors I can feel. "I can imagine they really bug you," Dr. G said. Yes. Yes, they do. A lot. I want to feel them shrink, right beneath my fingertips, the sooner the better. My first appointment for mapping and evaluation will be next Tuesday, August 27, and treatment should probably start the next week.
There was more good news from today's visit. Dr. G said my Albumen levels (part of the blood tests that measure nutrition) were great and he was proud of me for getting my nutrition up! He said to keep doing whatever I was doing because it was working. I'm sure that's also why my energy & strength has been better the past few weeks. I also signed consent to have some of my tumor tissue genetically tested for a trial that determines which drugs work the best with certain DNA. I don't have to do anything (but give the okay for testing) - everything else is done in the labs - and then they get back to Dr. G to give him my results, which may eventually lead to treatment specific to my DNA. It could also lead to the development of new drugs in the future. Pretty awesome. And speaking of drugs, Dr. G said that when PD-1 is approved by the FDA and put on the market in the next couple of years, I would have the opportunity to use it to fight my melanoma. I feel like I beat the odds by not getting into the trial and being randomized to standard chemotherapy.
To say the least, I came home today feeling 200% better than I did last week. I realized that what I was praying for, to qualify for the trial, was not the best thing for me; that once again, God knew what I truly needed. He knew what would be best, and that it was both radiation and IPI. He knew what would work and what wouldn't. He knew how anxious I was to see results, especially in the tumors that are the most worrisome right now. He just knows. He's my Father, He created me, and He's known me since before my birth. When will I learn to say, "Thy will be done," with the first prayers? It brings such peace and comfort to know that He has had a hand in every facet of today's visit and decisions.
I will sleep better tonight.
(Picture: Mom, Troy, and I after lunch at the Blue Plate diner in SLC in May)
To my sweet friend, Robin: I'm so glad you found me! Please email me when you can - I'd love to catch up! Love you, Lisa
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