Hi all - Never thought I'd be here

Adagio7780

You know, I keep telling my wife and kids how amazing I am, but they get tired of hearing it. Smile

I rode my son's motorcycle up through the NC mountains to visit my dad in Kingsport, TN over the weekend. Waiting on my return was the dreaded email from Duke that the next treatment option is the usual cocktail of rat poison and rocket fuel, i.e., xeloda, oxaliplatin, avastin, and dasatinib. Since this seems to be the only treatment option remaining, I have decided to go ahead and give it a try. If the tumor growth can be slowed without the side effects being too awful, I'll hang in for a few cycles. My first grandchild is due May 20, 2010. How about that.

Scheduled start is Oct 20. Keep pulling for me, guys.
_________________
Man tracht, Got lacht (Man plans, God laughs)

kbosz · Regular Joined: 18 Jun 2009 Posts: 12

Floyd-

My thoughts are with you. Thank you for continuing to post, you are a source of encouragement for many people out there.

AnnetteSC · Regular Joined: 25 Sep 2009 Posts: 11

I hope and pray this cocktail works wonders for you, Floyd. If anybody can fight this monster, you can!!
By the way, this ( http://www.yalecancercenter.org/news/newsltr_pdfs/fall07.pdf ) is a great article about the doctor treating my dad at Yale (Dr. Saif). The thing that stood out the most to me in the article is the fact that two of his many pancan patients are mentioned there. Both had stage IV pancan and are living past 2 yrs from diagnosis!
It really gives hope and encouragement to all those who are victims of this awful monster.
Good luck and God Bless.
_________________
~Annette

MelissaV · Posted: Fri Oct 09, 2009 11:29 pm Post subject: Hi Floyd!

Hi Floyd: Glad you're still tooling around! I read that you are a collector car fan. Me too, but can't really afford them. I just sold my '97 Cobra Mustang so I have some $$ to be with Mom. I had some mods. put on her; supercharger, gear, exhaust, tires etc... and even raced at the track for the first time at 48 years old and holding. My wonderful boyfriend back when I was a young 40 year old bought me a pass to drive a NASCAR. It was the best ten laps of my life!

On the serious side though. My Mom had her permanent stent placed in her bile duct yesterday. It was a surprisingly tough surgery for her, and rather than an outpatient surgery, she was sadly admitted to stay overnight. Fortunately, she didn't remember any pain. She was discharged about noon today. In a bad turn of events, she was re-admitted at about 8:00 p.m. cst tonight for a fever. She is as I write in ER with a 102 degree fever. They are doing X-rays, and CT scans. My sister is with her, and hopefully we will know more soon. I'm so worried, I don't know what to do. I'm a stinking 1,000 miles away.

Best Melissa V

I wonder how Lucy is doing? I hope her trip to Croatia is a really great one!
_________________
Looking for inspiration

Adagio7780 · Last edited by Adagio7780 on Tue Oct 13, 2009 4:46 pm; edited 1 time in total

Thanks for the site, AnnetteSC, I checked it out and passed it along to my study nurse. MelissaV, I'm hoping your mom just has a little reaction to the surgery that the drs can overcome quickly. I could also never afford any kind of really nice collector car, but enjoy watching the auctions on SpeedTV. I would like to go to the one in Scottsdale, AZ in Jan if I am able, not to buy anything but just to look. My wife and I took our old RV to a middle-of-nowhere state park this weekend and I was able to walk to an overlook on Saturday and enjoy the view. (Poinsett SP, Wedgefield, SC) I'm taking my Oxycodone three times a day now, but it keeps the pain from the abdominal tumors pretty much in check. BTW, I'm on Facebook under Floyd Bryant.
_________________
Man tracht, Got lacht (Man plans, God laughs)

LittleMe · Regular Joined: 28 Sep 2009 Posts: 21

Adagio - congratulations on the news of your first grandchild due in May. That's wonderful. Smile

Best of luck with the next phase of your treatment.

Adagio7780

My wife and I returned from Duke this afternoon after a little lab work and consultation with the staff. Next Tuesday (Oct 20) I will begin a new regimen of four drugs, two IV and two oral. I will have to go to Duke each Tuesday for the first four weeks, and then once every three weeks. As I said earlier, it is hoped that this cocktail will slow the growth of the tumors and allow me to breathe this old dirty air for a while longer. A CT Scan will be done after completion of the ninth week, which puts it either Dec 22 or 29. Coincidentally, we were told on 12/23/08 the results of the first CT Scan. I'm luckier than most stage IV patients, who typically do not make a one year anniversary.

All these drugs, xeloda, oxaliplatin, avastin, and dasatinib, are FDA approved and have been used for other types of cancer. This combination is a Phase I (dosing) study for pancreatic cancer. The pretty nurse explained likely side effects in an encouraging fashion, and the doctor later explained them in a decidedly discouraging fashion, ending with, "Overall, it will probably be a little worse than before." Well, we will hope for the good results and minimal sickness. I have looked over the Xeloda posts here, but how does one decide to 'spend' nine weeks of relatively healthy time (out of how many total? 20? 30?) in the hopes that the return on this investment will be some more weeks of indeterminate health later on? If I don't tolerate the drugs well, the decision will be made for me, so I hope I do. That's what it comes down to in the end. 'I hope.'

Well you know that, in the meantime, I'm not sitting still. I'm headed for the NC Outer Banks for a long weekend of surf fishing in the rain. See you there.
_________________
Man tracht, Got lacht (Man plans, God laughs)

minava01 · New User Joined: 09 Dec 2008 Posts: 7

Adagio, I do not have pancreatic cancer but there have been people close to me who have been diagnosed so I am sensitive to the issues this disease presents. I often research online about new treatments in the works (I am in law school and am interested in patent/pharma. law), and today I found an article that I think you should read and consider before making another treatment decision. The agent is called Rexin-G.

http://www.reuters.com/article/pressRelease/idUS94306+14-Oct-2009+PRN20091014

I don't know if you've already heard of this, but if you haven't I figured it was worth a read considering its significant results. Take care.

Adagio7780

Wow! I sent this link straight to my clinical trials nurse at Duke. I might end up buying you a beer... Thanks!
_________________
Man tracht, Got lacht (Man plans, God laughs)

minava01 · New User Joined: 09 Dec 2008 Posts: 7

I'm glad to help. I hope everything falls into place quickly and easily. Make sure you update here on how it goes.

Adagio7780

Bummer on the reuters news release. My oncologist called and had checked it out. He apologized for the roller coaster ride these things cause, but said it was a typical 'Elvis sighting' from small biomedical companies. Oh well, back to reality, which this weekend is a rainy but relaxing time at the NC Outer Banks.
_________________
Man tracht, Got lacht (Man plans, God laughs)

Adagio7780

Got started on the two IV drugs today, oxaliplatin and avastin, and will start the two oral drugs, xeloda and dasatinib tomorrow. Had a loooong day, started out leaving the NC Outer Banks at 0600 for the four-hour ride to Duke, got lab work done and saw the doctor, then the treatment room was backed up 2-1/2 hours, so didn't leave there until 7:30 pm and arrived home about 10:00 pm.

I've got my 'mind right' (me and Cool Hand Luke) about the positive outcome of this trial. I am looking forward to shrinking the size and number of tumors over the next nine weeks, which will hopefully mean that I will have less pain as well. My 'baby-dose' oxycodone continues to handle the pain well.

I'm actually looking forward to staying around the house for a few weeks. We've sure done some traveling in the last few months! Hope all is well with you guys.
_________________
Man tracht, Got lacht (Man plans, God laughs)

LucyInTheSky · Regular Joined: 20 Jan 2009 Posts: 14

Dear Floyd,

Thanks for the update. It is always great to hear from you, the way you always find an upside to everything is very refreshing and encouraging!
I returned from my trip to Europe last week.
The couple of weeks I spent with mom gave me an opportunity to see her at her best, during her rest week as well on a Tuesday after chemo.
She has received 22 Gemzar therapies so far which is something that has to be considered when commenting on her overall well being. She is doing great.
Recently she started complaining about pain in her right shoulder that radiates into her armpits as well as all the way to the tip of her fingers, however the oncologist doesn't think it's related to the primary disease.
Her blood work is also mainly within normal range, recovering quickly during the rest week and declining during her chemo weeks.
Her liver is enlarged due to numerous mets, so it often bothers her but she is in no other pain otherwise, for which we're all eternally grateful.
Since she began her treatment, her CA19-9 levels dropped from >36,000 to 900.

Floyd, how are you feeling today, any side effects from the new drugs?
I hope your CA19-9 start dropping again soon!

We haven't had any updates from MelissaV since her mom's stent surgery, I hope all is well.

MelissaV · Posted: Tue Oct 27, 2009 8:02 pm Post subject: Hi Lucy and Floyd

Hi Lucy and Floyd:

I'm so glad that you had a nice trip to visit your Mom, Lucy. You sound so much happier having visited her! I'm also glad to know that she is doing better than you had anticipated?

I too just came home from visiting my Mom. Her stent operation didn't go very well. She contracted a strep. infection which really slowed her down, but she is recovering fairly well. My brother flew in from San Diego too, and Mom put us both to work. We had five dumpster loads full of stuff that she had accumulated over the 30 years she has lived in Colorado, but really wanted to get rid of. My sister also came every day from about a one hour trip to Mom's too. We worked hard, and also took time to have fun too. We rented some movies, and played games. Mom is looking very fragile these days. It is hard to believe that she was climbing up on her own roof about eight months ago. Her blood counts are good because she hasn't had chemo in a few weeks, and she is scheduled for a CT scan in a couple of weeks. She still has some violent, yet quick pains across her abdomen, but the oncologist believes these will pass in a couple of weeks. I surely hope so.

Floyd, I hope all of your newest treatments are going well for you. Please be sure to continue sharing your good news with us as we look to you for inspiration and hope. I am also very curious about any side effects you are feeling too.

Speaking of which...I came her looking for inspiration, but have found so much more. I admire the courage of all of you having to endure this horrible disease, and with such dignity - particularly you Floyd. And to all of you who have to worry about your loved ones going through this too - Lucy. I also have the utmost admiration to all of the administrators of this sight who tirelessly continue to give ALL of us hope, and provide us with invaluable information about this disease and, how us loved ones can cope.

Feel free to Facebook me too. My name is Melissa Vipham. You can see my lame attempt at car racing, Floyd!

Warmest Regards, Melissa
_________________
Looking for inspiration

Adagio7780

Well, I wish the news was better, but it has been a tough week. I did not tolerate the new chemo very well, dealing with nausea and not very well at that. I also had quite a bit of abdominal pain, which lead to shortness of breath, which actually culminated in a call to 911 Saturday so the good paramedics could come over and calm me down a bit. I was able to keep down a little supper that night and breakfast Sunday morning, which included a spoonful of grits, a fried egg, half piece of toast, a Zofran, (2) Oxycodone, (2) Viokase, (1) Hydrochlorathiazide, (1) Xanax, (3) Xeloda, and (2) Dasatinib. Yummy!

We made the trip to Duke Tuesday and got the meds adjusted a bit, and I feel better now, Wed 10/28. My last thought going to bed Monday night and the first one waking Tuesday morning was that I would tell my doctor that I was through with treatment. I had spent the last five days sitting in my den listening to the TV but not having the strength to open my eyes. But I also had lost over ten pounds in seven days and was a little dehydrated, and much of the weakness came from that. So I'm back on the meds and thinking about heading out for a little breakfast this morning, ever hopeful that the constant pill-tweaking will be of great benefit.

I have also come to accept and even look forward to the lessons I'm learning about the emotional train wreck that is my life now. For example, it okay for me to accept the great outpouring of love from friends, family, and even my medical team that has lately come my way. It's easy for a man to turn aside such outpourings, and I have done so for years and to my detriment. You wonderful care givers will see a lot of changes in your patients, perhaps not all of them for the worse.
_________________
Man tracht, Got lacht (Man plans, God laughs)

	Cancer Forums Forum Index -> Pancreatic Cancer Forum	All times are GMT - 5 Hours Goto page Previous 1, 2, 3, 4, 5, 6 Next
Page 5 of 6

A website for discussions about any type of cancer, including lung cancer, breast cancer, mesothelioma, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others