One sleepless night did it to me. I spent the rest of the week in turmoil questioning my decisions and decrying the injustice of it all. But it turns out I was right all along. Radiation with concurrent chemo is the only way to go.
I must have looked at nearly 400 brief descriptions of clinical trials that came up when I searched with pancreat cancer (I use 'pancreat' instead of pancreatic to show disrespect, like when people refer to the Democrat Party). I winnowed it down to 7 that looked like they might work for me. And then I started calling them. I am apparently not sick enough for a trial. One interviewer was sorry that I didn't have metastatic lesions on my liver. How odd. Another trial required a needle biopsy - but since my recurrent tumor is so small and inoperable, we agreed that it was unlikely someone would be able to thread a needle in there without killing me.
One of the studies convinced me that it might really have something new and promising; a gene splitting, stem cell from your own body kind of thing that they ferment and then reinject. But the exclusion rules included previous treatment with Gemcitabine. I am arguing with them a little since my Gemcitabine treatment ended 50 weeks ago, but scientist have their own standards - she did not believe me when I explained how special I really am.
All in all it was just way too many choices of treatment for way too little potential improvement. Kaufman and I will decide which chemo to use, and then start therapy as soon as possible.
I'll keep you posted.
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9 comments:
A tough decision John but now you move forward. We send all our energy and good will to you and Vicki.
Hi John,
I don't come by the shop much anymore, but do read the blog. I'm sorry to hear what's happened, and wanted to let you know you and your family are in my thoughts.
Morgret and other,
Thanks for checking in and saying hello. It's good to hear from people who care about us during this confusing time.
I hope people who want to comment will let us know who they are and that anyone who's interested can converse here.
Be well and don't forget to vote on Tuesday. Our world depends on every vote.
Thanks, Vicki
I totally get what you are talking about. When I was first diagnosed with Kidney cancer, I spent an inordinate amount of time checking the clinical trials, the requirements, the exclusions, the results, etc. etc, I was totally overwhelmed and stayed up nights on the internet trying to figure things out. I finally stopped, because by the time I was finished reading, the sun would be coming up and my lack of sleep was making me literally crazy. Luckily I didn't need the trials, but I sure as heck understand the craziness of it all. I hope your Doc can help you sort it out. I am sure whatever you do will be the right decision, my heart is with the whole family, love Karen W.
Hi! Good for you, taking command and continuing to do the research, searching through the haystack for the golden needle. Every survival story I've ever heard has come from those who didn't give up, didn't just act like a leaf pulled down the stream during a rainstorm. They kept a great attitude and never gave up and never stopped searching. And, somehow, crawling through that maze of heavy vines, at some point, they forged their own path to survival. And, they won! So, keep it up. Never feel as if your efforts are in vain. Our health system is a maze and only the pro-active have a chance in hell.
My dad is 87 and has had emphysema (runs in our family)and is in the hospital with a bad case of pneumonia and a lung infection; yet, he has the best attitude. When I called him there, he told me a joke that he found in a magazine last time he went to get his hair cut at the barber shop. He says he always tries to find and remember a joke each time he goes to get his hair cut. He's had some rough times with his lungs; yet, I think it's his attitude that has always pulled him through. Sending hugs and best wishes. Paulette
John and Vicki, thanks for the updates. I'm glad you are being proactive and seeking out treatment options instead of just waiting for a doctor to tell you what you can and should do (or not do). That make a huge difference from what my friend experienced when he had leukemia several years ago (and licked it!)
- Dan
John - Thank you for sharing your thoughts and deliberations as you go through this difficult time. I'm amazed and impressed with your outlook and clear thinking. Definitely an inspiration. Greg and I leave on Monday (yes, before the election) for a month of travel in Asia and will keep checking your blog. We'll be in Indonesia when the election results are announced. I'm counting on having a lot to cheer about (otherwise, we'll have to look at immigrating to Australia!). With love, Karen
thanks you guys for keeping me in the loop! I send you good energy and always lots of love!
Dana Hawke (Knudsen)
Hi John and Vicki. I am thinking about you in this time of challenges. We sure learn a lot about ourselves when we are thrown into difficult situations. I don't think we realize how strong we are until we have to face death.
I hope you are supporting your good health as you attack the cancer in your body. I would love to send you a CD by an immunologist who works with cancer patients after they have undergone chemo. He talks about the importance of glutathione. Let me know if that would be of interest to you.
Take care.
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