Russ

Hi, Russ! I saw your post on one of the threads about having stomach cancer now. I'm so sorry to read this. I am sending very best wishes to you and look forward to hearing how you've beaten this one, too. Take care.

Hi, Russ. I haven’t seen a post from you for awhile. Now I read what you wrote here and am glad you’re doing well. Just saying hi! Best, Carool

Hi, Russ. You have been on my mind lately, and I was wondering how you are doing? If you are up to it, let us know how you are coming along after your surgery.

Hello Russ. I banned myself from going online since I was diagnosed in late November 2018 to research anything about cancer. A nurse convinced me that I would only upset myself with statistics that had no bearing on whether or not I was going to beat this demon. I took her advice and left my care in the hands of my doctor's knowing I can't change fate. Today, from my lounge in Johannesburg, South Africa, I decided to just.see what they said about chemo versus radiation. And I stumbled upon you and your 18-year survival story. Reading your posts has filled me with a greater hope than I've had. Until now I've just been going through the motions and not thinking beyond my next treatment. Thank you, Russ, for being a beacon of hope and telling your positive survival story so that others, like me, have a real reason to believe. Fondest, Celine

Hi there Russ, thank you for your post on my wall. I have read your answers to survivor’s questions for years. When I first came here in 2013, I was given the support, hope and encouragement so many survivors, especially those newly diagnosed, need. I had no idea you were an eighteen year survivor of pancreatic cancer and add my congratulations for your long term survival. I too at times , have had some survivor guilt as I have met many ovarian cancer survivors over the years who have never reached remission and many with recurrence who keep fighting the battle. I have to remind myself that there are close to thirty different types of ovarian cancer and everyone responds cifferently to treatment. Still, it is difficult to read when a survivor sister gets her teal wings.

You are fortunate to have so many grandchildren and an interesting mix of cultures in your family. I remember the days when we would shuffle between my family and my husband’s family for the holidays. I am blessed to have one grandchild, and yes, she is a bit spoiled. My daughter had to have in vitro fertilization to conceive. I am known by the traditional name of grandma and my hubby is pa pa. My granddaughter calls her other grandmother mimi.

I know you will keep reaching out to survivors giving them hope and inspiration and I can tell you from my own personal experience on WhatNext it does make a difference.

Thank you, Russ. I do not worry about myself, but kids possibly affected gives me nightmare. I hope they are as lucky as your daughter.

Hi, Russ. I currently am a WhatNext member for myself as a breast cancer survivor. I am reaching out to you as a caregiver for my husband who has been diagnosed with "Adenocarcinoma of head of pancreas". It took a month and a half for the doctors to diagnose him and another month for treatment to start. He is Stage II. He has his first chemo on Monday. He is not doing well with it. He has no appetite and can't drink much. He has been back to the cancer center everyday for them to give him IV fluids. I found you, and you are giving me hope. I know this is going to be a tough road, and I pray that he won't give up on the treatment. He has lost over 30 pounds. Fortunately, he had it to lose, but it is becoming too much. If you have any suggestions, I would be very grateful. I don't know how I can help him. I think it is much harder to be the caregiver than it is the patient. Thanks for letting me vent. Take care.

Thank you so much. I had my niece read about you to my brother. He is a former West Point graduate who has been working for IBM and is 61 years old soon to be 62. He was just about to retire. I cannot tell you how much your post meant to us. He has been through his second chemo and has been very sick. I do not live near by and honestly they do not want company till after the chemo when he feels better. We appreciate you more than we can say.

Thank you so much for the nice things you said about me. Very much appreciated.

I was thinking today that this is like being in AA. I had a 14 year chip and then a teeny spot so I gotta start all over from day one again.

Cheers

Thanks for supporting others by answering questions, offering advice and positive wishes! It does make a difference for them to see that other people have been there and are doing OK.
Greg

Thanx, Russ!

Regarding what you said about my demeanor.

Much appreciated.

Keep on truckin' :-D

I would like to know if you consider that chemo was an important factor in your ilness and why. -

Thanks Russ for the encouragement. I am so grateful to have found this site. I have so many questions that have been answered by just reading others remarks. It has been a Godsend!

Thank you for responding...The last couple of days have been really tough. My husband has been extremely weak and suffering from mouth sores which is just one more thing to impede his appetite. Today has been a little better.

I would like to know if somebody can tell what are the minimum health parameters to undergo chemotherapy. Currently I am very week and I would like to know about the health conditions of those who have pancreatic cancer and have undergone that treatment. As well as any recommendations in what refers to diet and supplements before and after

I also would like to know about the most effective way to create a fundraising campaign.

Thanks for your message Russ. The patient is my dad. He was diagnosed on the 1st of April here (a terrible joke on us). The trouble of living in a third world country is getting any positive treatment options.

Hello, thanks for your comments on work/disability. Your story is an inspriration! Take care!

Russ
You surely went thru a lot. Did you have a Whipple surgery? I have been diagnosed by accident via MRi and then MRCP MRI with IPMN precancerous cysts on the head of my pancreas and also a precancerous cyst in my distal bile duct. From what I have read the only way they can get them out is with a Whipple. I am only 108 lbs and from what I have read the operation is horrible, the recovery is horrible and you lose about 50 lbs. Let's see, that would make me about 58 lbs. I presume as I am also 77 with other health problems I would not be a good candidate for this surgery.

My doctors offfice made an appointment with a doctor Wm Brugge at Mass General in MA and I asked them if I could have a 2nd opinion name also and they said I would have to do that on my own and could not use them as a referral and I would have to get a referral from my PCP.who doesn't know anything about it if you know what I mean. I am not sure if it is the doctor or just the wonderful office staff that thought that one up.

Can you kind of let me know what I may be in for and the best way to find another good doctor in MA. I don't feel right about just calling up Brigham and Womens/Dana Farber and ask for a doctors name. I would rather have one recommended. I am sure Dr. Brugge must be good but I still would like that 2nd opinion.

Thank you for any info you can send my way and I am really glad you got through all this and an inspiration as a 14 year survivor.

Hello Russ,

Your story has really inspired me!

I am currently a caregiver to my mother who was diagnosed with stage IV pancreatic cancer. She has gone through a lot and on July 21 it will be one year since she was told such heart breaking news.

She has been receiving chemo and has lost over 20 pounds because she does not want to eat. It is sad to see her so thin. She is trying to fight this huge battle and all in the family have supported her 200% but it is hard....soooo very hard.

We try not to loose hope but there are moments that you ask yourself, how much more can her body take? Cancer is a hard and cruel journey. I feel I am on a roller coaster and just when I thought I could get off I really cant. All I cant think of is ......please don't let her suffer.

Thanks for listening and I am sooo happy to hear how people can survive

Warm regards,

Anjanette

Thank you for sharing, Russ. It is great to read that someone has been a long time survivor. I hope that someday I can say that too. I had my first series of Folinox yesterday. The 5FU I only have for 46 hrs each infusion day. When I had the regime the first time it was brutal too. It took all my strength until I ended up in a wheel chair. I cannot imagine the 5FU for 5 weeks straight. I remember my husband having to help me shower and get dressed, as I fell a few times. God Bless both of them for being there for us. Thank you ain for your encouragement. Take care!!!

Wow, great journey, Mr Fighter. Ur one tough guy, obviously with a heart of gold. Sorry the diabetes has kicked up, I too have it, but control mine with diet & supplements, no fancy special order stuff, just good vitamins & minerals OTC. Funny thing is, I never put the side affects of my diabetes together with my breast cancer. I pretty much have all of your most recent except the Vomiting & Shingles. Gonna share this with my youngest daughter whos 55 yr old boyfriend has a mass on his pancreas that they are watching, & repeating another ct in 3 months.

Hi Russ, let me begin by saying what an inspiration you are to me and many others! There are some things I would like to get your opinion on if you don't mind. I was diagnosed with mucinous adenocarcinoma of pancreas with mets to both lungs which puts me in the stage IV bracket. I don't understand the difference in your cancer or others pancreatic cancer other than I have mets in the lungs. Had 6 chemo treatments and it worked on putting the pancreas to "rest" but did not work for lungs. My oncologist told me to take the summer off and enjoy it and come back in the fall and we would regroup and see where things were then. Had PET scan end of August which showed pancreas still "resting" but nodules in lungs still growing and multiplying, which is what that test has shown every time. I am now waiting on results from tumor profiling which is something relatively new I guess to see if we can determine the best drug for the lungs for me personally. My concerns are..should I get a second opinion, it seems we should be doing something other than just waiting and watching, which is what I have done a lot since I found out, but I am not having a lot of symptoms so the dr. really takes a laid back attitude about it. I realize receiving treatment will make me feel bad but think I should be doing something but don't know what. He is a very good dr. and totally respects my decisions, but I just feel anxious about doing nothing sometimes. I wonder about cancer treatment centers, clinical trials, etc. but not sure which way to turn at this point. I hear good and bad things about those places. He says there is no cure for what I have but that with drugs we can try to manage it for awhile, so that kind of dampens my hope. I try to have a positive attitude but it is depressing thinking you have something inside of you that is going to kill you and there is nothing you can do about it. I am sorry for venting, I am just feeling scared, uncertain and confused and honestly don't know what to do. Any input from you or others would be greatly appreciated..thanks!

Hi Russ,

Thanks for the 5FU vs. FOLFIRINOX feedback. My response was base on the fact that 5FU is one of four components the FDA approved FOLFIRINOX http://www.cancer.gov/cancertopics/druginfo/FOLFIRINOXegimen.

To error is human, but I've never read or heard of 5FU being independently infused without the other three elements. Have you?

Based on my wife's experience with 15 FOLFIRNOX treatments over the past 11 months along with comments shared by her oncologist and 2nd opinions obtained by PC specialists at Mayo Clinic, 5FU is blamed for most of the side-effects from this aggressive, but effective regimen for some PC patients. As some proof of its nastiness, 5FU was the first drug to be reduced by 20% when my wife's platelet counts dropped below safe treatment levels.

Thanks again for your comments. Rick

Morning Russ, my husband Bob is in getting his port for Chemo.. here we go. Can I ask if you did anything beside the cut, burn and poison (surgery, radiation, chemo) that mainstream medicine dictates??

Hi Russ,
I have not been on in a while.. You were right about being able to eat more things as time goes on. I have not been brave enough to try steak yet. I still do not tolerate fresh vegetables or fresh fruit. I hope you are doing well.

Hi russ..talked to u awhile back about my dad..He had the Whipple procedure may 7th and has been struggling ever since. Right now the problem is diarrhea and not being able to hold onto the protein he's trying to eat. He is getting very discouraged because he eats n it goes right through him. Now his feet r red n swollen because of cellulitis they say is because of the lack of protein. He started chemo again last week once a week but we r trying everything to combat this diarrhea. Any experience with this? Any help would be appreciated. Thanks - renee gurnsey

Hi! How R U doing? I just found out that I have a 1cm tumor in the body of the pancreas. I have been having this pancreatic pain radiating to back since Jan. Went to Penn Med, they did an endo ultrasound and found the tumor. In june had mri, nothing showed. Thank God, they found it early. Suggesting Proton therapy and chemo. Second option was to remove pancreas. Surgeon thinks this could be a genetic cancer, where it could keep coming back in the pancreas, that's why they suggest removing pancreas. It is usually rare. I don't think I can handle a surgery at this point, and the complications that may occur. I just started eating a little better, due to taking pain meds. Did gain 5 lbs, but still only 95 lbs. Having pet scan next week. I really like the team at penn med. Proton therapy is clinical trial. But I would rather go that route 1st. It's like having the brcg gene where people don't have the cancer but get the breast and ovaries removed. Will probally have genetic testing done, especially for my family. Any suggestions. Hope, you are well. Thanks

Thank you Russ for your response. I am hopeful once more and will keep you posted about my progress. I am currently awaiting taking an endoscopic ultrasound which will determine which surgery, if any, I may be able to have. It may be nano-knife or whipple. It all depends on the hepatic artery. I'm almost too afraid to get my hopes up but I will. Positive thinking. Again, thank you for your good wishes.....Elaine

Hi! Russ. I don't know if I found the reason for my pain, but I had an upper endo ultrasound done in hospital, showed 1 cm mass on pancreas near bile duct. The burning pain I get is similar to the pain I had before my pancreatic cancer diagnosis. CT scan in Jan. did show a dilated bile duct. So, I'm hoping this is a blessing in disguise. Waiting on biopsy report. Have you talked to anyone who had proton therapy for pancreatic cancer, if I have to have an treatment I was interested in that type of therapy. My endo didn't show acid of bile reflux, but esophagitis. Needing more prayers, and hopefully caught early is tumor is positive. Any suggestions? Thanks