Russ

Russ,
You are an inspiration and you turned my entire outlook around, this weekend. "Thank You" !!!!!
What are you doing for your diet ?? I still have no appetite, and I am sure this is normal. I am eating regular food but I have to be careful or the Stomach Pain & Acid Reflux will kill me all night.. I woulfd really like to keep in touch with you and learn from you, I am a strong person & strong willed, so let the fight begin !!!! ;-) ;-)

I need Contact Info. on Greg (I think) ??

Russ, Hi! How have you been. Sorry, I haven't kept in touch. Been dealing with problems, since whipple. Having problem with bile reflux, causes burning in pancreatic area radiating to back, gets worse with eating. I know sometimes, when I go to a party I will eat the dessert, which may start the flare up, than it takes a long time to get it under control. Also, have acid reflux and slowed motility so I have to watch fiber. Which are healthy foods like fruits and vegetables I have to watch. I have a difficult time finding right foods to eat and gain weight. Only weigh 90lb. It's trial and error. The flare I am in now is also burning my esophagus. I have gone for a second opinion at Penn Med. My surgeon said he doesn't have any patients who had problems with bile reflux after whipple. It's like pouring acid in you stomach area. Had MRI, but has not been read yet. My dr. is on vacation. Do you know of anyone who has this problem with bile reflux and if so, how have that had this treated. Acid reflux meds. do not help. I take a powder called Cholestryramine, which does help some. But is seems like I get a flare about every 3 months and can't always pin point which food is causing. It's like being on a roller coaster, one day I can something than the next, I might have more pain. I never know what kind of tummy day I will have .I am borderline with slowed motility called gastroparesis. I had a port a cath but got infection so they removed. I had to be on TPN twice since whipple and several visits to ER. I know there is surgery, but I don't now if I am a candidate or how well it works. I'm getting very frustrated with what to eat everyday. I have all kinds of inflammation books, acid books and diets. I feel like I'm running in circles and it is wearing me down. It seem to get worse after all my treatments were completed. I have 2 beautiful grandkids and another on the way. I want to be able to enjoy them. God, saved me from pancreatic cancer, I don't want to leave this world due to malnutrition. I f you have any suggestion or know of anyone who has this problem, I would love some feedback. I eat as healthy as I can 6 small meals a day, try for a lot of protein.. It's when I go out I have a hard time watching diet and I will sometimes bring my own food. Hope, you are well. Thanks

I am honored that you have chosen to follow me.

Thank you Russ. I am hopeful but a little scared of disappointment too. I've sent an email to my surgeon at Sloan Kettering in NY and awaiting a reply. In the meantime I've gotten the name of a doctor who has performed this, also in NYC at Columbia Presbyterian. It almost sounds too good to be true but my fingers are crossed. Thanks for your response. Elaine

Hi Russ,
Thanks so much for the information. I was away in Aruba to celebrate my 3 year whipple anniversary and was fine until I ate 2 ribs that my husband wanted me to taste. The next day(Monday) I felt horrible and Tuesday when we left I had several bowel accidents in the airport so I understand what you said about these issues.
My stools are no longer black-found out this is from the Pepto Bismol-they are now normal in color and no more loose stools or diarhea. I'm feeling much better today just nauseous, so to be safe I had a doctor friend of mine write a prescription for blood work since my last ct scan was last July and the next will be in August. You are so right---we all have to adjust to our "new normal" and for some of us it takes longer to figure things out.

Thanks again-have a great weekend!

Hi Russ,
My name is Janet. I will be a 3 year survivor of stage adenocarcinoma of the pancreas on 4/27. I would like to share some of my experiences with you . I am so happy that you are a 13 year survivor. Please email me when you can.

Thank you so much for your message. I am the caregive,my husband the patient--somehow my profile didn't show up correctly. I am a very early stage BCa survivor, 10+ years now. We're both from IN but have lived in TX 17 years. Larry has been doing well, but has surgery scheduled Mar. 18 to repair hernia at the site of his earlier distal pancreatectomy. Think that has raised my anxiety level. Trying hard to be fearless rather that fearful--it's hard. He's stronger than I am. I've stayed off sites like this and wasn't sure I'd done the right thing by signing up.

Thanks, Neecer and russ for your info. Yes, I was trying to eat more alkaline foods, but still was having the burning. I was eating kefir yogurts, cheese, trying mostly organic and gluten free foods. Fish, cod, salmon, flounder, chicken noodle soup, rice crackers gluten free. Organic turkey in broth. At this point my insides was so inflamed, anything I eat burns. And due to slow motility, it takes longer for my food to digest, so if I got constipated, the acid got worse. Took stool softeners, miralax. Today, I had 1 tbsp. of baby rice cereal with water and a half cup homemade chicken broth, burning down from pancreas thru intestines. Did take 2 enzymes, before I eat I take a tsp. of coconut oil, mct oil and aloe vera juice, which does help coat. Take Carafate after meals due to binds with enzymes. I think it's a matter of time for healing. I have about three different books on acid reflux, dropping acid. At this point I can't even eat anything else. Next week I will try to try something different, something alkaline. It's baby steps. Russ, yes I would like to give you my e mail address. How do I let Greg know? God Bless.

I need some more of that positive energy. I had a lot, until this set back. I'm so afraid of not being able to eat, I want to get back to my small six meals healthy meals a day. Do have to watch fiber due to slow motility and with acid reflux limits some of foods I can eat. It's all trial and error. I go to the cancer support group in Ridgeland once a week. I walk everyday. I visit with my grandkids. Try to continue to go to parties, but very hard when you can't eat. I used to pack my own food. I try to remind muself it's about the social event and not the food ,but are lives revolve around food. I pray I will heal. God saved me from pancreatic cancer, I don't want to die from malnutrition, I am a active person, but lately I don't have the energy. I still get out everyday. God Bless

I watched your interview, you did a great job.

Hi! Russ, I don't know if you remember me, I haven't talked to you in a long time. How are you doing? My life has been challenging in the last few months. After my Whipple in dec 2012, I had delayed gastric emptying. Was on TPN for 2 months. Started eating six small meals a day, mostly scrambled eggs, chicken noodle soup, laughing cow lf cheese, rice crackers. By march was eating more foods, still six small meals, but was able to still eat some sweets, just took more enzymes, problem would be gas and bloating. Started chemo in march, than radiation in april and may, than finished chemo in aug last yr. Had some bad days with chemo, I remember you saying you had to crawl to get to the bathroom at one point. I got to that point. Eating, was so so, maintained weight. Did have a lot of problems with acid and constipation. Had emptying study done, GI, PH test all came back normal, but I do believe I have some slowed motility. Seeing GI dr. who deals with motility issues, At Jeff. I see a dietician, in oct. was able to eat edy's half churned ice cream, half gallon with only bloating. Trying to put weight on. Started probiotics, lots of bloating stopped, started eating yogurt with probotics. Than one night I had my edy's ice cream, had lot's of pain and bloating. It's like all of sudden my body was rejecting sweets. Dec. I did do some cheating and would take more creon, but than more constipation. Ct Scan was good, but showed stool still in intestines. Had burning from pancreas thru digestive tract, but just kept eating thru the pain. Took Prilosec 40mg in am and Pepcid 40mg in pm. Jan. I went to my girlfriends, daughters wedding, ate a small pc. of chocolate cake, vanilla ice cream, small pc of mousse. Later that night I had bad pain and bloating. Since, than the burning has gotten worse, but continued to eat. wasn't gaining any weight only 87 lbs. Cannot drink supplements they sit in my stomach like a brick. Joined a group healing Gastroparesis naturally, using oils. and kefir yogurt, cheese, butter. Still had burning, somedays worse, was eating organic foods. Did wean off my Prilosec, just taking over the counter Pepcid and restarted Carafate, but have to take after eating cause it binds with enzymes.
Last upper endo, gi dr. said my insides were beet red. I am now back on TPN, due to losing more weight. Only 84 lbs. They think, the inflammation maybe due to acid reflux, chemo , radiation and slowed motility. Drinking only homemade broth and water, everytime I try something else, it burns worse. Back on Prilosec and Pepcid in tpn, Carafate. I trying to remain positive. I have a appointment in april with a dr. at penn med. for second opinion on motility issues. I know you had a lot of digestive problems. Any suggestions, I feel like i'll never eat again. I don't want to die from malnutrition, after having surviving pancreatic cancer. Sorry, so long. Hope, you and your family are well.

Russ, your story is so inspiring. My spouse was diagnosed with Stage IV. We started our first round of chemo. What gave you the strength to get through?

I haven't seen your email yet

Hey Russ....Good Rant.
I'm declining all the Poison and Burning for Raw Foods, Juicing and Anti Cancer Supplements. The ONLY Entity on the Planet that KNOWS HOW to kill runaway cells are our Killer T Cells and I'm for giving them more ammunition to do the job they aren't doing very well. Chemo and Radiation can kill a lot of these cells but Do NOT address the underlying issue as to Why our Immune system fell down on the job. I believe the best chance is to change everything we are doing. I'm hopeful and at 68 I have been given more time on the Planet than I ever expected and Do NOT want to get sick from the Treatment. Have you ever read the book THE CHINA STUDY.....or this site below?

http://www.chrisbeatcancer.com/

Chris has a great facebook page also.
Good Luck as we all need it...especially ME....lol
Barry

I watched your interview this afternoon to know that you have to take 40 some pills. I had stomach cancer and have no stomach. I found out that fermented food or food with enzymes helped me a great deal. I wonder if that will help you as well. Take care.

Also known as deSmile...trying to navigate the website!!

You are my hero and neighbor in NJ! My husband will join you as veterans on winning the war on Pancreatic Cancer!

Dear Russ, thank you for your kind words and support. It's so great to hear that you are 13 years outta this mess! And still, you are here supporting those who are somewhat new to it all. You are a Godsend. I feel so much better just reading the responses and have re-read each one and I'm holding on to all of the wonderful wishes and hope for better days to come. I know now that I'm not alone, that I will get through this! God bless you, Donna

Hi Russ, it was a pleasure to hear your story. I was diagnosed with stage IV colon cancer 3 months ago. Of course there were so many emotions but I'm focused and have to get back to living a productive life. After the anger of being diagnosis with the cancer along with the shock I said there is too much I still have to do. So I had to change my way of thinking which bought me to positive thinking brings positive results and even though the treatments get harder I want to live. So thank you for your story. God Bless

Hi Russ, Thanks for your last post.I had written to you ( maybe you didn't get it ) I had read a post that you had written way back to someone recommending a book " Surviving Cancer Emotionally "
I got it the next day and loved it. I wish everyone on here could read it. So,I just wanted to say thanks. Hope you are doing well. Zoe

Hi! Russ, hope your doing well I spoke to you before. I have finished my treatments for pancreatic cancer, stage 2b. But been having really been acid reflux since finishing in August. Already lost about 40 lbs., since whipple last year. Due to delayed gastric empting. Was on TPN for 2 months, which did help. Ate small portions of scrambled eggs, yogurt, cottage cheese. Did have problems with constipation. Had UGI with small bowel follow thru, no obstruction, had ct scan, only showed kidney stone.had 4 hr empting study done, shows normal. UGI did show copius amounts of acid. Pain got so bad, wasn't eating good was in hospital for 6 days. Did upper endo, showed inflammation at anastomosis. Treated with pepcid in hospital and pain med., Rehydrated. Already on other meds. Pain not better. any suggestions.

Hi Russ,

Thank you for your inquiry. I have had EUC x1, ERCP x2 and bile duct stent placement x3 with the first 2 temporary and the final permanent. I have been told I am a surgery candidate after chemo to shrink the tumor (head of the pancreas), which I have had 4 bouts so far. Chemo consisted of Gemzar and oxaliplatin, and the last I honestly do not know. This was followed by a shot of Neulasta 4 weeks ago with very unpleasant side-effects to date. No radiation due to the hopes of surgery in the future.

Congratulations for being a 13 year survivor. This is so good to hear. I was diagnosed with pancreatic cancer last July and wish I had known of this web site earlier. I look forward in continuing this journey with the support of WhatNext, meeting new friends, and hope!

Victoria

Hi Russ, yes,more surgery. I don't know when yet, but I hope it's soon so I can get this over with. Of course I'm SCARED,but I have no choice. I keep thinking how awful it would be if it were inoperable, then I would be begging for surgery ! This will be the exact same surgery that I had a few weeks ago but on the other lung. At least I know what I'm in for this time. It really wasn't horrible, I'm just a big baby. How are you doing ? I read one of your posts from a long time ago.You recommended a book to someone " Surviving Cancer Emotionally " I ordered it the next day and I just finished reading it. It's a wonderful book , it was so helpful,thanks for the recommending it. I hope you're well,take care Russ and thanks for your post. Zoe

Russ - First thank you so much for taking the time to reply. What you wrote brought tears to my eyes because you get it. Even though looks wise I resemble my dad and nothing like my mom or siblings personality is spot on my mom(as much as I don't want to admit it ).We are strong, we are the fixers, and when we are not in control it is hard to just sit back. When my dad was sick her and I went to his appts. She took him to his weekly chemo on Monday and I took him to radiation Tuesday -Friday. We shared daily responsibility relating to his care.My brother and sister could not be around it. So when my mom was diagnosed (at the same age as my dad ).I felt overwhelmed and am at a totally different stage in my life than I was 7 years ago. As scary as it was for my mom. I was scared I couldn't survive loosing another parent or doing it without a "sidekick". 6 months was what we were told was all we had. Bucket list - Epcot at Disney World.... We did it all the parks. She even saw her cousin and talk to her great Aunt while we were there. I love my mom and respect the decisions she has made. Her estate is in order. All formal paperwork is in place for the end.We know the inevitable it is just hard to wait and watch as the hourglass drains but with no end in sight. I don't ask the whys. Everything happens for a reason. And God never gives you more than you can handle. I saw her today and she was asking me about paleo eating (which I started in May and I feel the best I ever have ) And admitted some symptoms she has which was her way of admitting the tumor in the liver has gotten worse (these new symptoms are listed under liver cancer and not related to the pancreatic cancer ) So I feel we had some progress. I didn't push or ask about when her dr appt is or was.( my grandmother said she went 2 weeks ago and they moved to 6 months instead of 4 months puzzling if she is getting worse) Anyway thanks for the advice and support you have been a beacon in my storm and I am so grateful. Take care. - Stacy

Russ, I just read your post to Gillmomof3. I just wanted to tell you, YOU ROCK! Thank you for sharing such a beautiful post.

Hi Russ....Thank you for sharing your story. My mom was recently diagnosed with pancreatic cancer and will begin treatment soon. I have been wondering what to expect when she begins treatment and I thank you for your honesty in sharing your own journey. If there is anything you think I can do for her to help her get through this stage, I would really appreciate your input. All the best to you. -TP

Hello Russ,
Did your CA 19-9 rise while you were having chemo(5FU)/radiation for 5 weeks ? My husband is on his 3rd week and it went from 28 to 140. I read somewhere that it was not uncommon during radiation. Do you have more info?

Hi Russ,
Thanks for the inspiration! My husband was diagnosed in Jan..had the whipple. He has prostate cancer that is being put to sleep with hormones until he finishes chemo...only 4 left! He is a fighter like you! He has only missed 1 day of work (but many have been very tough) since this journey began. He had ureter problems and they discovered cancer there and his right kidney (removed) so that was surgery 2 in April. 30 days of radiation and zoledo at the front of treatment. His ca 19-9 is elevated and I don't know the number, and we are waiting for doc to advise...the insurance denied the PET scan..said it was experimental??? wow. So they did a CT scan last week...I am on pins and needles. Bill is an eternal opptomist and I am working hard to be the same way...I am wondering how folks deal with the uncertainty...not about living each day-we are pretty good at that, but the more long term...sell the property now and travel? Hunker in and believe everything will turn out fine and we have many more years? That is what feels really tough. Thanks for sharing your story...it really helps to keep the rest of us hopeful!
AnnieO

Good morning Russ! Thank you so much for responding to my question! It's a bit of a relieve to hear that this high number could be the meds or the pancreas! My number seems to have shot up out of nowhere! I hope I don't end up taking more meds!
I see you writing encouraging words to so very many people on here! What a 'good work' you are doing! Your story gives people hope... As we have all come to acknowledge HOPE is one of the best possible medicines! Again- thanks for responding to my question! Blessings- beeps