Hi all - Never thought I'd be here

[Adagio7780]

Hello, my name is Floyd. I am a 54 year old male, never smoked, social drinker, real estate investor (a few modest rental houses). I like sailing, light hiking, RVing with my wife, old sports cars. I have a pilots license but haven't flown for a couple of years, and I have a piano I haven't played much in a couple of years. I could stand to lose 20 lbs, but that's all. Other than occasional antibiotic prescriptions associated with dental work or some such, I have never taken any medicine at all.

I started having a little abdominal pain associated with bathroom visits in Oct 08. After a couple of weeks, I went to my family doctor and had an exam including prostate. That being normal, I had a colonoscopy, which was perfect - not even one pollup. A week later, Dec 19, I had a CT Scan. On Dec 23 the GI Doctor referred me to the Carolinas Medical Center in Charlotte, NC for an EUS to confirm his fear of pancan. The diagnosis was adenocarcinoma, the tumor being located in the body of the pancreas. In preparation for distal pancreatectomy on Jan 7, a laparoscopy confirmed stage IV, and the surgery was canceled. I am awaiting a call back from the oncologist with possible clinical trials ideas. My age and decently good health supposedly make me a good candidate for surviving longer than most with this diagnosis. I have searched so far in vain for a five-year survivor.

The family has been great, friends old and new have come out of the woodwork with support. I am overwhelmed with gratitude for all of that. I am still, except for that nagging little bathroom pain, utterly asymptomatic. I keep waiting for the doctor to call and say, "Hey, we made a mistake!"

So, here I am, and I look forward to talking to you and sharing our stories, and I wish each of you well. I have read over this forum for a couple of days, and the struggles I see are valiant and frightening. Thank you all for contributing. It helps me to be among people who have in common an understanding of this, one of life's cruelest facts.

[Steph_mom]

Hello Floyd,

There is nothing I can say to make the news any easier to hear or face. I used this forum while my husband was ill, and the support was over whelming, and sometimes you just need to talk. Please know that there are many people who are praying and know what you are going through.

[Sherry]

Hey Floyd,
Did you get a chance to talk with the oncologist this week? Just wondered if you heard or decided on anything. Been thinking about you.

[Adagio7780]

Thanks for the kind words. Forums such as these must be the greatest use of the internet. Sherry, I did get a call from Duke University, but the clinical trial included a 1/3 chance of gemcitibine plus placebo, and I am looking at other trials that do not have a placebo arm. My step-daughter is a veterinarian and has helped immensely. She is coming over today to look over the list I have compiled of possibilities. I will make a decision by Jan 19 as to which trial I will try to get into. If anybody has any ideas, I'm open! Thanks again.

[wannaknow]

A7780:
Since you asked for opinions & ideas, here goes.
In reading your description of the events, something does not add up.
First, they seem to give you a clear diagnosis but once they took a peek the diagnosis changes dramatically. Why & how?
Unless you have infinite confidence & belief in the surgeon and the oncologist, do not accept that shift without them giving you very detailed explanations with proof.
There's lots of info on pancreatic cancer on the web (traveling so I do not have the links on this computer) that can help you get up to speed with everything you need to know about the organ, the cancer, the stages & treatment options. The knowledge & info will serve you well throughout this process.
A 2nd opinion would be more than reasonable given the mention of stage IV

Wishing You the best in your battle

[Adagio7780]

Thanks wannaknow for the input. Adenocarcinoma was diagnosed with an Endoscopic Ultrasound with Fine Needle Aspiration (EUS/FNA). The stage IV diagnosis was from the laparoscopy done in preparation for distal pancreatectomy. The pictures of my abdominal wall and liver show many white spots of varying shapes and sizes that the surgeon said are tumors, evidence of the metastases. He had warned us that in his experience, 50% of patients who appear at first to be operable turn out not to be. I was in the unlucky half. I have shown the pictures to two other doctors who concur with the surgeon's findings.

As I begin treatment, I am hopeful for some finding that lends encouragement. I hope to be enrolled in a clinical trial by Jan 25.

Thanks again for writing.

[wannaknow]

A7780:
Got It.
What is interesting (and confusing at times) when you read thru the various diagnosis are the variety of ways they arrive at the conclusion.

In my Mom's case, they did the similar Endosopic but then the surgeon went in to get an upclose look with the plan to do the resection - 75+% was taken.

Now round 2 when symptoms returned - It was all CT scan with contrast and a PET scan which (based on what I've read) gives incredible details (including measurements) of even the smallest growths. Then CT scan was repeated after the last Chemo round with another coming up as this round end at the end of the month.

So they do not believe any of the standard treatments - chemo and/or radiation can help?

The only other thing that I've studied is a dramatic diet shift (from animal to plant based) to help your body heal but it's on the other end of the radical scale from clinical trials.

Again, All the Best in your battle.

[Adagio7780]

Quick update on my situation: I have been accepted into the clinical trial that at first I had reservations about. I looked at various possibilities for two weeks or so and this seemed the best for me. All arms of the trial include gemcitibine, and two arms combine it with a monoclonal antibody. The entire staff was wonderful on my first visit, and the treatment starts Feb 10. So, here we go. Thanks again for the encouragement and prayers.

[Sherry]

Hey Floyd,
I'm glad you have made your decision. I hope all goes well for you. Just wanted to let you know I'm thinking about you!!

Sherry

[jessica026]

i just wanted to say you sound so brave and strong
my mom was young as well and she was only 49 when she passed.
keep us posted please

[Maynard72]

Floyd,
From one fighter of this cancer to another know that I am praying for you and the treatments.

Aaron

[Adagio7780]

Well, I finished the first three treatments of gemcitibine yesterday (Feb 24). I must say the side effects have been a little less each week. I never had much nausea, but did retain some fluid for a couple of days each week and was of course, very weak. I typically stay on the recliner all day Wed and Thurs and most of Friday. It is during this time that it is most difficult to fight off the 'Why me' feelings and try to think positively. Saturday I can go out and help with the grocery shopping, and Sunday and Monday I feel pretty normal but with no real stamina. My schedule is three weeks on/one off, so I have my 'skip week' coming up. Yea for skip weeks!

The clinical trial I'm in also infuses a study drug (or perhaps a placebo) on the first and third weeks. At this time I am unable to tell much difference from the side effects, so I don't have an opinion as to whether I'm getting the real stuff.

Good luck to all, and thanks for all the kind words and support.

[LucyInTheSky]

Dear Floyd, I registered on this forum around the time you posted your first diagnosis. It's around that time that my mom was diagnosed with stage IV as well.
Everyday I log in to see if there are any updates from you, how you're feeling and what you're going through with your treatment.

My mom lives in Europe and it's a whole different world when it comes to health care, yet so much the same when it comes to this disease.

You haven't been posting much lately and I was just wondering how the treatment is going and whether you see any benefits from the clinical trial yet.
Stay strong!

[Adagio7780]

LucyInTheSky, thanks for keeping up. My treatments have been pretty routine, I guess. I am in a trial at Duke using Gemzar and a study drug. The study drug is a monoclonal antibody. This is a blind study, so I may be getting a placebo instead of the study drug, but I do get the Gemzar on a 3 week on/1 off cycle. I just completed the second cycle, and will get at CT Scan next week. Needless to say, I am very anxious about the results from the scan!

I receive the treatments (infusions) on Tuesdays. Typically, the side effects are fatigue Wed-Fri, and usually on Thursdays I start running a fever which lasts 12-18 hours. Saturdays I feel like going out for a few hours, and by Monday I feel pretty good. Since I'm getting so little physical activity, I tire very easily and it's easy to overdo it. As my dr predicted, the side effects are somewhat less with each treatment. My WBC (white blood cell) counts did not take nearly the hit during the second cycle compared to the first, and my platelet count has never dropped that much, which I understand is unusual. In the weeks prior to starting treatment, I had a bit of abdominal pain (my mets were to the peritoneal and diaphragm) and those pains are 99% gone now.

What we are hoping is that I will respond well enough to the treatment that I will be able to scale back on the frequency or perhaps even stop altogether. I harbor no illusions about this disease but as I have written here before, each of us hopes that we will be one of the lucky few who beats it back for a few years.

I do check in on the board a few times a week, and I was planning to post my progress after the CT Scan. Hopefully, it will be encouraging for all of us.

I would be interested in comparing the health care between our countries. My care at Duke is over $8,500 per visit(!), (and that with no overnight stay) which would work out to more than $300,000 for a full year's treatment. My wife works for a large company and our health insurance costs us about $200 per month. With this plan, I will pay between $3000 and $4000 per year myself and the insurance company will cover the remainder. I am very fortunate indeed to have such good coverage.

Thanks again for asking. I hope your mom is doing well.

[Sherry]

I'm so glad you posted. I too have been wondering about you. Thanks for the update.