I’m Not Dead Yet (I.N.D.Y.)

You know, when I was taking the Xeloda, all I could do was complain about the neuropathy in my feet and fingertips.  Now that I have stopped taking Xeloda, I find myself complaining about feeling like I did before I started the chemo — feeling generally yucky, no appetite, nausea, and generalized pain (oh, and the neuropathy in my fingertips is still around).  Just to give you a sense of what the issue with my fingertips is: did you ever dip your fingers into melted wax when you were younger?  You had some sensation through your fingers, but it was “muted.”  That’s a lot of what I am feeling now.  My fingers continue to be very dry and using the ‘moo goo’ is not really helping.

I say better living through chemistry because I can take some vicodin to help with the generalized pain, some other medicine to help with the nausea, and while I was feeling yucky earlier this evening, I am now feeling acceptable.  As long as I take my medications, I’ll be fine.

But enough of my complaining.  I can still say that I am well enough to go to work (and actually be productive-ish).  My family is healthy.  I have had the opportunity to spend time with my wife; visited with my extended family a couple of weeks ago, and I continue to have kids that are healthy and happy.  I am looking forward to spending time with my family and friends this holiday season both here and abroad.

As always, the question is not how am I doing? but how am I doing right now; and right now, I’m doing okay.

Thank you for another year of support and I look forward to beating back my cancer in 2011.  More on new treatments in another post.

INDY!

Merle

Tags: Main, Treatment by Merle
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When I first had the celiac plexus block, I was told that it would last for 2-3 months.  Unfortunately for me, the pain started coming back within the month, but it was tolerable.  Now the pain is more pronounced and I’m going for my 2nd procedure this morning.  The pain has become more pronounced over the past month and I have been relying more and more on vicodin to dull the pain.

Here’s hoping that this 2nd procedure is as successful as the first procedure.

Merle

Tags: Main, Treatment by Merle
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The trip to the Virginia G. Piper Cancer Center was somewhat anticlimactic.  I met with Dr. Ramanathan (and Dr. Von Hoff) this morning in the hopes that they would have some great insight into a treatment that my oncologist (Dr. Kauh) might not have considered.  As I wrote yesterday, Dr. Von Hoff had talked (on Saturday) about how successful the gemcitabine / Abraxane combination was in reducing the number of tumors in pancreatic cancer patients.  It sounded great!  Unfortunately, talking with Dr. Ramanathan today we agreed that I am not a good candidate for this treatment.  For those of you who have been reading for a while, you know that I did not respond well to gemcitabine during my post surgery chemo (my white blood cell counts plummeted to critical levels on the normal gemcitabine regimen).  On top of that, according to Dr. Ramanathan, there is only preliminary evidence that the combo is effective on initial tumors (and no real evidence that it is effective on recurrent tumors).

The folks here in AZ are going to request some of the tissue samples from the tumor removed during my surgery (my recurrent tumor is buried deep in my chest and the risks outweigh the benefits of trying to do a biopsy on me right now).  They are going to do some molecular genetic testing on my samples to try and identify specific targets in MY pancreatic cancer that might be amenable to specific additional chemotherapies.  So there is a plan in place to try and adjust my treatment so that it is maximally effective.  Hopefully, we’ll hear something from them toward the end of this year (beginning of next year).  Until then, I’ll stick to taking the Xeloda and dealing with the neuropathy in my fingers and feet.

So, no miracle.  I’m stuck with my slow growing, lazy tumor and hopes that the Xeloda helps keep it slow growing.  I meet with Dr. Kauh on Thursday to talk about my visit.  Interesting fact, Dr. Kauh is part of the pancreatic cancer research team headed by Dr. Von Hoff, so Dr. Ramanathan knows Dr. Kauh and was going to call him and update Dr. Kauh about their (the AZ folks) ideas for my treatment.  Also on Thursday, I will be meeting with Dr. Landry (my radiation oncologist) to talk about the possibility of some very targeted radiation therapy (like cyberknife).  On Friday, I meet with Dr. Bias-Smith, who is the head of the pain management team to see about getting another nerve block for my pain and then on Saturday, the family and I travel up to NJ for Hamburger Hannukah.  Other than that, we have nothing going on this week.

More later.

Merle

Tags: Cancer News, Main, Treatment by Merle
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I had the opportunity to listen to Dr. Dan Von Hoff talk about his work on pancreatic cancer.  Granted it was a talk given at a fundraiser for pancreatic cancer, but he was very positive.  According to his presentation, he and his colleagues have not only found a treatment option that not only stops new tumors from starting and existing tumors from growing, but this treatment (Gemcitabine and Abraxane) has been shown to be effective at shrinking existing tumors.

We’ll have to wait and see if I am a candidate for this treatment; first, I had a hard time the last time I was one Gemcitabine and if I do not have a certain gene, Abraxane may not be effective.  I’m trying to keep my hope in check, but it was hard not to be really positive coming out of that presentation.  Just some good news I wanted to share with you all.  I’ll have more to say tomorrow after my appointment.

Have a great rest of the weekend.

Merle

Tags: Cancer News, Main by Merle
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…and it shows.  Apparently Google Chrome is sponsoring use of the Internet on Delta flights during the month of December.  Anyone who knows me knows: (a) I’m something of a computer geek (I’ve been affectionately referred to as part of the ‘Nerd Herd’) and (b) I’m incredibly cheap frugal.  Who am I to turn up an opportunity for free Internet access (while flying, no less).

MaryBeth and I are on our way to Phoenix / Scottsdale to get an 2nd opinion about treatment options.  Which brings me to the news we received yesterday.  Unfortunately, the small ‘haze’ from 2 months ago turns to have been the beginning formation of a new tumor.  I have a 3cm tumor at the base of the mesenteric artery near where I had had positive margins.  Dr. Kauh told me that given its proximity to the remnants of the old tumor, he would refer to the new tumor as a locally recurrent tumor.  What that boils down to is that there does not seem to be evidence at this time of metastasis, which is good.  The tumor is slow growing (whether that is due to the chemo I’m taking or something else, is not clear) which is also good.  So for what it is, this is generally good news (in the same way it would be good news for an amputee to have his leg amputated below the knee rather than above the knee).

The chemo I am on currently (Xeloda) is an oral version of a relatively old chemotherapy for pancreatic cancer.  We are traveling to Scottsdale to meet with colleagues of Dr. Von Hoff whose team seems to be on the cutting edge of pancreatic cancer treatment.  (This is along the line of going to where the expert is — I went to Hopkins to have the best surgeon perform my Whipple, now I’m going to the best researcher/practitioner to get treatment options.) Thus, they may suggest a new chemo (or combination of drugs) that may be more effective for treating this recurrence.  There is also the possibility that there is a clinical trial that I may be able to participate in, as well.

There is also the possibility that I may be able to get some more radiation to treat the tumor.  Way back when, I was told that my abdomen had been exposed to the maximum level of radiation it could stand, but Dr. Kauh thinks there might be some specialized techniques to pinpoint the radiation to treat the tumor.  I have an appointment with Dr. Landry, my radiation oncologist to double check next week.  I’ll keep you informed of that development.

Healthwise, the abdominal and back pain continues to present itself…it’s slowly creeping back in.  As a result, I have an appointment with the pain management doctor to look into having another nerve block.  Until then, I am managing the pain largely unaided (though, I do resort to a Lortab/Vicodin from time to time).  Still, the biggest issue (besides the abdominal/back pain) continues to be the side effect of the Xeloda of drying out my hands and feet.  I started the new course of Xeloda on Monday and already my feet and hands are feeling the effects.  I’m using Udderly Smooth to keep my hands and feet moisturized and that seems to be working thus far.

Overall, I’m in generally good spirits today.  It’s nice that MB and I are getting some time alone (we have a wonderful woman, who has worked/babysat for us for over 9 years, watching our kids while we’re away).  On the upside, we are sort of getting a vacation with the added bonus that we can write off our expenses on our taxes. 

Until next time,

Merle

Tags: Cancer News, Family, Main, Treatment by Merle
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