There is Always Hope -- Don't be a Statistic

Billusa · Regular Joined: 06 Oct 2008 Posts: 15 Location: Dallas, TX

I recently found this forum and it has been very informative and enlightening. My heart goes out to all that have been impacted by PC, whatever stage it was.

I am 53 and was very healthy -- am 6'1" and have weighed between 155 and 168 since I was in my twenties. Before that, I was skinny... Wink

The day after Memorial Day 2008, my CT scan results showed I had stage IV adenocarcenoma on the tail of my pancreas, with mets in my liver. The PC was almost 5cm and 3 spots on the liver were 2.5 to 3cm. There were also numerous smaller liver tumors (1cm or so). My wife and I calmly freaked, if one can do both at the same time. I had been feeling ill -- belching, gas, abdominal pain, early satiation and indigestion for 4 months. I was down 14 lbs, mostly muscle mass because I was too tired to excercise. I had been positively diagnosed and treated for H. Pylori after an esophageal exam, but the abdominal pain still kept on. I think that the H. Pylori was an "opportunistic infection" and had masked what I really had -- PC.

Anyway, within 10 days of the CT results, I got in to see a wonderful pancreatic oncologist at UT Southwestern (Dallas), had a medi-port in 2 days after that, signed into a double-blind, phase 3 clinical trial (Pfizer's Axitinib) a day after that, and was on chemo 5 days later. The chemo is Gemzar 3 weeks on/ 1 week off, plus the "Axitinib trial drug or placebo" twice daily. Bingo, bango bongo -- it was a whirlwind! At that time, my initial CA19-9 was at 1200.

Two days after my first infusion I had no more abdominal pain. I had only minor nausea the day of the chemo that was controlled by one pill. Nothing any day following. My appetite returned. My malaise and lethargy started to go away. The second infusion week it just got better. And again, only minor nausea that day, plus a feeling of just being "wiped out" that only lasted that chemo day.

It has now been over 4 months that I have been on this routine and I just finished round 5, session one of Gemzar. I'm still in the clinical trial and still taking the "Axitinib trial drug or placebo" twice daily. Since nobody knows which I am getting, it is impossible to tell, but we are pretty well convinced that I am getting Axitinib and not a placebo. Here's why:

- My weight was 145 when I started -- now it's holding steady for the past month at 154-157lbs.
- I have not had one day of pain beyond '1' (on a scale of 10) since day 2 of my first chemo. Prior to that, I would say I was at 4-5 and took 500mg of Tylenol 4x daily.
- I couldn't walk 12 blocks then without getting tired. Now I can walk 3 miles and then work for 2 hours in the yard/garden n the afternoon.
- I have no hair loss, no muscle pain, only very minor diarrhea, no nausea whatsoever anymore, no back pain, no sores, no metallic taste, nothing. Just a minor rash that Gemzar can produce and that came only after round 3 of it.
- My RBC and WBC have been within normal range since the end of Round 3. Hemoglobin always bounces back in the off week and is barely below in chemo weeks.
- My ALT and AST are in the low end of normal.
- My neutrafil count and percentage are in the low end of normal.
- My CT in August showed almost 30% shrinkage in one liver tumor and at least 20% in the other two. The PC tumor was barely less. The CT last week showed continued shrinkage in all liver tumors, shrinkage in the PC tumor, and visible necrotic areas in edges and surface of all of them (dead tissue). Some of the small liver tumors from June were no longer visible.
- My CA19-9 has gone 1200--> 407--> 144--> 80 from June to August. Last week it was up a bit to 160, but that can also be caused by dead tumor tissue being absorbed into the blood stream and it can raise the numbers. We will watch it, though.
- My clothes all fit again and I feel normal.

Suffice to say that I changed my diet back in June. We always ate health food. I cut out daily wine for 3 months and now have 1-2 small glasses a week. I went on resveratrol at least 3 time a week (active antioxidant component in red wine). I do daily organic granola w/ blueberries. We bought a juicer and I do carrot/apple juice at least 3x a week. Multiple supplements inc. fish oil, niacin, vit C and magnesium, phosphorous and iron. Lots of water. Lots of fresh, organic veggies and fish chicken and beef/lamb/pork only 3-4 times per month. Lots of beans/legumes and pasta/tomato sauce.

And lots and lots of good thoughts and talking and prayers from ourselves and from family and friends. I do not know what the future will bring, but so far we have gone from living day to day to planning month to month. It is still in the back of our minds every day, but it no longer dominates our being. I will not be bad statistic -- I am me and I am going to beat it!

So, there is hope and I wish everyone else out here the very best. And, I highly recommend StandUp2Cancer. They are targeting PC (and other cancers) with donations in new ways and it can only help.

Very Happy

Queensland Girl

Hello Billusa,

Thany you for sharing your story. I trully hope that you are on the road to recovery. I wish you all the best in the world. It is so refreshing to read of an uplifting and positive story, rather than what most of us have been allotted.

You will be a beacon of hope for people with this disease.

May every angel, God and good luck charm smile upon you.
_________________
Regards,

Queensland Girl

Mum diagnosed June 1993, surgery and chemo died August 1993 (Pancreatic Cancer)
Dad diagnosed July 2007, chemo only died January 2008 (Pancreatic Cancer)

reedy

That is truly amazing!!! my dad passed away due to pc in june this year, he had one round of chemo with no results, we were not happy with the treatment he received and the attitudes of the doctors, they just gave up i think despite dad's wish to fight, he gave up drinking and ate really healthy lots of fresh veg and fruit, he also used a juicer and had juices every day and a variety of herbal medicines! Despite all this he declined very rapidly. I wish your story had have been around before.
I will be sending all my positive thoughts your way and looking forward to hearing of your progress!! is so good to read a positive story among all the sad ones!!

Billusa · Regular Joined: 06 Oct 2008 Posts: 15 Location: Dallas, TX

Queensland Girl, Reedy... thank very much for the good vibes and word.

A few things I forgot to mention that may help others in future:
- I take a probiotic yogurt or drink every morning.
- I take a digestive enzyme pill with lunch and dinner. Many doctors recommend these for people with pancreatitis. I found it very helpful in the beginning and even now. They are available over the counter at all health food stores, and most organic grocers like Whole Foods in the US.

Where ever you are, take charge and ask questions. Actively pursue clinical trial options. In the US that can be done at CancerDOTgov and go to clinical trials (I can't post links yet). Be an exceptional patient and make it your fight to learn as much as you can.

brainman

Hi Bill, because this topic goes beyond just Pancreatic Cancer and could help individuals with other types of cancer, I am moving it to the Complementary and Alternative Medicine forum. I will leave a "shadow" here so that others who come here can see it and go to it easily.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Billusa · Regular Joined: 06 Oct 2008 Posts: 15 Location: Dallas, TX

Understood - makes sense!

I think that it's very important for me to note that I believe the things that I am doing are complementary to my progress so far. "Attitude" is at the top of my list.

I don't recall the exact figure, but, of all cancers that are stopped/put into remission/cured, something like 97% are the result of treatment via conventional, Western medicine as we know it. Thus, we are firmly convinced that the Gemzar (along with what we believe IS the Axitinib and NOT a placebo) is a leading factor in my progress.

Eileend · New User Joined: 28 Oct 2008 Posts: 9

Bill,

Thanks for sharing your story. I found it to be inspirational as all you read is “doom and gloom” about this disease. I hope and pray for you and your family as it sounds like you are doing well. Thanks for the uplift and the tips on what has worked for you. I hope to get my BIL into a clinical trial, I think that is important. He was supposed to be in one but had complications with blood clots so they said he can’t participate in that one. I’m on a mission to find another for him, there has to be something out there and I’m gonna find it!!!! Do you happen to know if the clinical your in is open to participants? I'm thinking not as many of the phase III trials are closed but wondering if you knew. Thanks

e

Billusa · Regular Joined: 06 Oct 2008 Posts: 15 Location: Dallas, TX

Thanks for the kind thoughts! yes, it still open and can be found here:
http://www.clinicaltrials.gov/ct2/show/NCT00471146

It is also at multiple locations, which are listed there.

By the way, I just left the study last week. My latest CT showed increased tunors in the liver, but the PC tumor is still the same. Part bad and part good. We have spent the last week looking at Second Line regimens, inc. some phase 1 trials. We have decided to go with GTX (gemcitabine, taxotere, xeloda) at UTSW in an off-label regimen. Taxotere must be apporved by your ins. co. in TX for such usage, but there are many studies available for proof and they will usually come around.

I am more achy and tired now, but still leading a "normal life" and working. Tally ho!!!
And good luck to you and your brother-in-law. Very Happy

Eileend · New User Joined: 28 Oct 2008 Posts: 9

Bill,

Thank you so much for the link, so appreciative of the info. I'm so sorry to hear the news; I will keep you in my prayers and stay strong because something seems to be working for you as you are maintaining your quality of life which is so important.

I wanted to share with you a resource I came across in researching info for my BIL. The process of researching clinical trials is an overwhelming one; there is so much info to go through. I spent the last few days on the phone to many of the top hospitals obtaining info on protocols so that I would have the info ready and available for my BIL if he wanted to get another opinion and to see if they had trials going on. When I spoke to someone at Mayo Clinic, they told me about a free service that matches patients up with clinical trials. It’s a free service and the name of the company is EmergingMed and you can Google them. You may already know about this resource but I thought I would share it, as I was happy to hear about it. I spent 3 days non-stop on the phone last week talking to hospitals, at the end of three days, I had only obtained general info from 6 hospitals. I haven’t tried it yet as my BIL wanted to wait until Monday to call them. He has had a rough few days and wasn’t up for it, he is still having challenges with blood clots; every time they take him off heprin and move him to another blood thinner he doesn’t respond well, gets more clots, heart rate goes up and he has trouble breathing. I hope this info is helpful and thanks for sharing the clinical trial info with me. Stay strong and keep that positive attitude.
Eileen

Billusa · Regular Joined: 06 Oct 2008 Posts: 15 Location: Dallas, TX

Thanks for that info, Eileen! You all will be in our thoughts and prayers too!!

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