Cancer is so trying

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.

Still undecided?

I got a new Doctor today - I now have a Radiation Oncologist, the delightful Dr. Lampenfield. He wanted to consult with me about radiation, but I think he mostly convinced me that I could make my decision regarding treatment now - why wait another month when nothing is really going to change for the better before that?

And one of the first things out of his mouth is that the his goal of radiation treatment for me is curative. So radiation is in. You get tattoos and everything. He pretty much relieved or minimized almost all of my fears. There is risk of some number of long term side affects, but they work real hard to stay below the level of exposure that raises that risk. And lots of people get by with only one good kidney anyway. What a commitment - 45 minutes a day for 6 weeks? Yikes.

The only question is whether to have chemo concurrently. And why not - in for a penny in for a pound. Running chemo at the same time increases the toxicity of each, but isn't that kind of the goal? And those effects should still fade away once the treatment is done.

Now, I had gemcitabine after my whipple. Dr. Tempero feels that gemcitabine works for me. But most of the available information about use of chemo with radiation is about a chemo called 5FU. Radiation Dr. says I should discuss it with Chemo Kaufman, but I'm pretty sure Kaufman will leave it up to me anyway. So which do I choose? There's a day or two of research to do about which way to go, although sometimes it feels like a coin toss would be just as good.

And I want to spend a little more energy looking into the availability of clinical trials. But I've got a couple weeks I guess. If I call Lampenfield tomorrow to go with the radiation, it's still 2 weeks before the first shot gets taken. Plenty of time for everything.

Here's to moving forward.

Decisions

So I don't have to worry about the intussecption anymore. That's good news.

I went to see the famous and fabulous Dr. Tempero at UCSF for a second (or third?) opinion about the PET scan and what I should do about it. Dr. Tempero is confident that my cancer has come back. It doesn't suck much worse than that.

She doesn't feel that surgery is a good idea, even if it's possible (which Chang says it is not). Nor is radiation. Her take is that we should consider Gemcitabine, the adjuvant chemo drug I took after my whipple procedure, which in my case, seems to have proven track record having kept the cancer at bay for the last year. Her experience says that if people get a recurrence or metastasis following a whipple, it will normally happen very quickly following the surgery. And in my case it has been over a year since the surgery, most likely due to the Gemcitabine. So treatment moving forward should include it. The surgery is not so good because it is focused on a small targeted area and that's not how my cancer works. Radiation works similarly but additionally might damage stuff and cause future problems while not necessarily giving much benefit.

She, like Kaufman, recognizes that while I probably feel an incredible urgency to do something about this thing growing inside of me as soon as possible, it is ok to wait a while and use the next scan to finalize my decision about treatment. And there's the rub.

Kaufman took my case to the tumor board at Kaiser on Friday morning. A bunch of different specialists sit around and look at pictures of my guts. He called last night to let me know that the board had convinced him that my cancer has returned, reinforcing how badly that sucks. His group recommends radiation therapy. This would not be the very focused cyberknife, but the generally less targeted radiation. They are conflicted about whether to recommend concurrent chemo or not - it makes everything more toxic, apparently. So I am going to see the radiation oncologist in the next little bit for a consultation.

So I don't know what to do and I don't know how to make the decision. I'm not as shocked by all the tumult this time around - I always knew that it was possible that it would come back, unlike the first time around when I thought cancer could never affect me or mine. I, like everyone else on the planet, want the best chance at the best quality life for as long as possible. But where is the balance and the tipping point in the choices of treatment? I feel like I have 6 weeks to make a decision and execute it. That's my timeline and I'm sticking to it - December 1st.

Encourage Congress to approve spending for Pancreatic Cancer Research

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It’s time to show our appreciation for the hard work of Representatives Eshoo & Brown-Waite! While we’re at it, let’s ask Congress to get ready for our 2009 pancreatic cancer legislation and prepare to co-sponsor this bill in the new Congress!

1. SIGN THIS ONLINE PETITION! Show your support for our historic legislation, the National Plan to Advance Pancreatic Cancer Research Act of 2008 (HR 7045), and thank Reps. Anna Eshoo (D-CA) and Ginny Brown-Waite (R-FL) for introducing it! Our goal is to get as many people across the country to sign this. Click here to sign today!
   
   
2. NEW ACTION ALERT! Ask your U.S. Representative to co-sponsor the National Plan to Advance Pancreatic Cancer Research Act in 2009! Let’s get started early by educating Congress about this potentially life-saving legislation and getting them fired up about it now! Click here to Take Action!

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Scanning

On September 4th I had a sort-of-quarterly CT Scan and Chemo Kaufman told me there was something wrong with it. I had something called an intussusception and that had to be taken care of as soon as possible. So he spoke with my most excellent hero Dr. CK Chang, the author of my whipple. Chang wanted a PET scan so I went to get one. This is where things get confusing - a PET scan automatically comes with a CT scan so people can see where any PET scan "bright" spots (generally not good) are really located. Well, I have a bright spot. To some, this indicates a recurrence of cancer. To others, like the good Dr. Kaufman, it could be caused by something happening near the scar tissue and re-plumbing liberties that came with my whipple. But there is no longer any indication of an intussusception.

Now Kaufman says I don't need to worry so much - when someone has a recurrence of pancreatic cancer it shows up as bright spots everywhere, you feel really bad, and as Kaufman says, "the end is nigh", and that's not the way this looks. But then I go see Chang and he's very sorry, he 'doesn't like to operate' in these cases, and he recommends some radiation and some chemo. Right now.

That was about 10 days ago. I started requesting copies of my records so that I could go get another opinion. I cracked down on my diet so that I could eliminate the confusion that pancreatitus wreaks on blood tests. I stopped sleeping and buying green bananas.

I took an enzyme test yesterday, the proof against pancreatitus interference - the results came back all good this morning so I went and gave more blood for the tumor marker tests this morning. Those results should be back sometime Thursday, probably when my brother Steve and I and my friend Jim are making the turn at Wente Vineyards golf course.

I wish it was just an intussusception. I've never been real keen on making detailed plans that MUST be adhered to, but I'd give my left arm for a plan right now - good, bad, or whatever. I have things to see, people to meet, and children to help move out. I feel great physically. Most of the time I feel good emotionally, too. But let's have a plan.

Thanks for checking -

John