armyret

Dear Armyret, I don't know if you are still us, but I still think about you and your family. God speed.

Thnking and praying for you Armyret........my husband Jim started 5FU a week ago. It's been a really rough week for him. Praying for your continued strength and peace......Bless you

I am thinking and praying for you. My husband has just finished almost 7 months of Gemzar and Abraxane his tumor has shrunk quite a bit. But mets on his liver now. He tolerated it very well, mostly fatigue and some chemo brain. Low platelets now so he will start Folfirnox in early Sept. We are leaving for Hawaii on Tues. before he starts. Surgeon said removal of the spleen will help low platelets. Neulasta is fab for WBC. He's retired Army as well, God Bless you both.

Hey armyret, How are you doing these days? Hanging in there huh? Did I send you, or did you see, the article about a woman who had chronic pancreatitis? She couldn't eat because of excruciating pain so she was eating through a tube in her stomach. I don't know how they made the connection, but she lived here in NJ, and her doctors here sent her to the University of Minnesota where ahe had to live for a few months. In January of this year she had surgery to remove her pancreas. They took a few islet cells from her pancreas and implanted them into her liver. Her liver is now acting as a pancreas and producing insulin. Amazing! Our liver is an amazing organ! I don't know how this would work for anyone out there like yourself or something close to helping someone. I should probably post this on WhatNext for everyone to see. It's worth a shot. Hope this finds you in good spirits, but I think you're always in good spirits regardless. My best to you...
Russ

Hello ArmyRet,
How's it going? Prayers and best wishes for better days ahead!
Rick

Hello Armyret,
I'm very sorry to hear that the Gemzar and Abraxane regimen isn't working for you. Inasmuch as it's the 2nd choice to my wife's current FOLFIRINOX regimen, it's a double bummer.

So, what next? We're thinking about a 3rd alternative (a.k.a., Hope & Prayer) known as Minnelide. It's a Phase I Clinical trial at the Univ. of MN. We totally understand it's not sponsored by JH, MDA, CC, MC or other PC research notables. But, historically real game changers (paradigm changers) seldom emerge from the established few.

Thus, on April 29th, we participated in a seminar sponsored by the PC Action Network (www.pancan.org) that included a presentation by Askok K. Saluja, PhD. His slide presentation to our group of PC survivors and caregivers is available on the PCAN website. Better yet, recently I discovered a different version of his presentation given to Med School physicians (Docs to Docs) at UW-Madison. I found this presentation to be even more enlightening and energizing. It's a bit Docy (technical) at times, but here's the link: http://videos.med.wisc.edu/videos/49472

Thank you for your service and sharing your life journey with us. Rick

Hi again armyet, Did you try to google these drugs? It may give some of what you are looking for...I sure hope so. My best to you again, and thanks for your service. I served in the Army in 1964-1967. Easy job, Army Finance, and spent 18 months in Bangkok. Take care of yourself and I will continue to pray for you.
My best to you...
Russ

Wishing you and your family the best, Army.

MY doctor has me on BMX solution which is a saving grace for mouth sores. If you aren't on it, insist on a prescription. Also don't use any type of toothpaste or mouth wash. Brush your teeth and gums gently with baking soda which neutralizes the acid in your mouth. This combo has helped me.

Hello ArmyRet,

I really appreciate following your posts. They help me to better understand my wife's treatment experiences and support needs. Thank you ... and best wishes in overcoming your own challenges. Rick

Hello armyret, The details that you're sharing of your experiences are extremely helpful to my wife ... a PC warrior, me. Plus, we're absolutely sure that your comments are insightful to many others. We hope that you have received encouraging news from your most recent scan and Doc update.

Hello Armyret, Thank you for sharing your journey with us. My wife just completed round 8 of her FOLFIRNOX regiment and has also been encouraged with the results to date.

Regarding the night time neuropathy issue that you've mentioned, she had a problem with cold feet that was impacting the quality of her sleep. Then, she found a heated mattress pad made by Sunbeam that's made a huge difference for her. It's a therapeutic warming mattress cover: Here's an example supplier: http://www.frontgate.com/therapeutic-warming-mattress-cover/16935

This product has the standard left-right side controls, but it also has three (3) controlled zones on each side. In other words, a head zone, body zone, and feet zone. It's a little pricey, but a good night sleep has been priceless for her and me too.

I hope the results of your upcoming scan is very encouraging. Best regards, Rick

Hi armyret's,
My name is Russ, and I am a stage IV, 13 year pancreatic cancer survivor. My surgery included the removal of 40% of my pancreas, my entire spleen, a slice of my left kidney, and 5 lymph nodes. The cancer had spread to the first lymph node, but the other ones were clear. Like you, it was treated aggressively. I had chemo, (5fu), 24/7, non-stop for 5 weeks, and radiation 5 days a week during the same 5 weeks. Then we did another round of chemo, Gemcitabine, (Gemzar), for 3 hours a day, one day a week, for 9 weeks. It wasn't nearly as bad as that first go around. Towards the last 10 days of that first chemo round I was crawling on my hands and knees until I could get up enough strength to stand up. There are a lot of good people on WhatNext, who have been through the same, if not worse treatments than you or I. But we only think about what "I" have been through, and rightfully so, it is human nature. I agree with FreeBird...a 70% and 50% reduction in your tumors is pretty darn good. You cannot give up now! What does this mean..."I am just delaying the inevitable?" What is the inevitable? Come on...don't give up hope now! I'll give you a couple examples about beating the odds. Before my surgery the doctors told me I had a 2% chance of making it 3 years, and if I made it that long I would have a 4% - 5% chance of making it 5 years. Before all this happened I was 180 lbs, and I lost 50 lbs. The oncologist told me I would be lucky if I got back to 155 lbs. Well guess what...I made it past 3 years; I made it past 5 years; I have made it 13 years...and I am now 167 lbs. Please don't give up hope at this point. Don't you have something or somebody to live for? I know I had a lot to live for...I now have 6 grand-children. That was my goal...but you know what? I am still not going to give up. I was diagnosed at age 56, and now I am 69. In order that we survive we must defy with a passion every thing this disease tries to do to us. I mean who is to say who belongs in that 4%-5%...somebody has to be in that number! May as well be you and me. That's what I told the doctors when they gave me the survival statistics of pancreatic cancer. I said..."just count me in, because some body has to be in those numbers, it may as well be me." Hang in there armyret's, my best to you.
Russ

Welcome to whatnext and best wishes to you.

Hello and welcome, we are glad you found us. Please feel free to join in the conversations. Here is a link to our cancer dx page for your type of cancer. Take a look at it to get you started on some information. You will notice at the bottom of that page 4 of our active users who have had that journey already, you may wish to contact them for their experience and wisdom. Also, I encourage you to go to the questions page now by clicking on the questions tab at the top of the page and post what is the most pressing issue you have right now. This will introduce you to the community and get you started on the help you need right now.

https://www.whatnext.com/conditions/cancer/pancreatic-cancer

There are also subtypes listed on this page to narrow down the type of cancer to match your dx.

Also, if you can take a few minutes and fill in some details of your journey so far, it will help others as they try to answer questions for you, it also helps others as they search through the data base to find someone like themselves. Confirming your email will allow you to receive updates and notices from the site when someone answers your questions or writes on your wall.

Thanks for being with us and let me know if I can help you find any information on the site. After you have an opportunity to look the site over and see what great things there are here, we encourage you to invite your friends, family or anyone you know that may be helped by the connections on WhatNext to join the site also. Just click this link to invite them to join. http://www.whatnext.com/recruit-a-friend

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GregP 3X Survivor
Team WhatNext Community Mgr

Welcome to the WhatNext family! The WhatNext family is made up of people like you who are looking for help or looking to help others. To help you along your journey the WhatNext family has put together a Beginner's Guide to Cancer that I highly recommend you check-out here: http://bit.ly/10BQKCi. Also, please do not hesitate to reach out to others or ask for help.

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David
Founder, WhatNexter