Russ

Hi Russ, I shared the poem This is my Time...My moment...loved it. I am new to this forum and I love it. I am fighting stage IV Pancreas Neurodendocrine Cancer High Grade with mets to the liver. In Operable, had 6 rounds of chemo that I ended up with blood clots in my leg and both lungs. The tumors have shrunk, but are not gone. Now they say to wait and see. If it starts to grow again, maybe I can have more chemo. I am feeling good now and enjoying everyday I am given.

Thanks for the reply Russ, and for the laugh:):)

Russ,, i read where you wrote a book on your cancer experience? how difficult was it to get published? and is the book on Amazon or in a book store?if you can give that news to me, tks, if not, ok. june

Hi Russ, I think because I only found out yesterday, my head is still spinning from the news. Maybe when I see this new thoracic surgeon and he tells me my options I will be able to accept it more. Right now I am still in shock.
I can accept chemo or radiation,PET scans,CT scans blood draws and even surgery if i'm put out.
Biopsy ? I don't think I can deal with it because I'd have to be awake for it. I had a needle biopsy for my pancreas while awake. You wouldn't believe the scene just getting me into the room,I was CRAZY ! Being as needle phobic as I am and to have a 10 inch or so needle put through my side into my pancreas was a horrible,horrible nightmare. I am praying that this new Dr. will want to wait and watch it for a month or two of maybe do a PET. I'll probably be seeing him within a couple of weeks.No appt. yet,my Dr. is going to set it up. I'll let you know.Thanks for your prayers Russ, and thinking of me. When I grow up I want to be as brave as you !!! Zoe

Ok Russ,here's the scoop. The nodule on my lung has grown 1 mm in 6 weeks. It went from 5 to 6 mm.My oncologist wants me to see a thoracic surgeon. He said it's very small and too small for a biopsy right now. He wants me to get set up with this new Dr. so he can watch it and say what the next step should be. I guess I'll have to just keep putting one foot in front of the other,nothing else I can do. And I thought I was depressed before !!! Thank you for your prayers,I hope you are well. Zoe

Thanks Russ for the long note. Yes I did have my scan this afternoon. I know we are all scared living scan to scan and hate always thinking the cancer is back.I 've had 7 or 8 scans so far and every one was clear. Usually I'm not too bad waiting for results,but this time was different. It really hit me hard when the Dr. said it looked like the nodule (which has been there all along ) has either grown or changed. Then he said he was asking for the results STAT and he wanted to see me the next day ,which is tomorrow afternoon. It's like he already knows it's not good. I don't know if it's common that a 2nd scan shows "Oh,Ok it really hasn't changed,it must have just been a shadow." but I sure hope that's the case of course. I know this is crazy,but to be totally honest,I would rather assume it is malignant and do chemo again than have a biopsy. I'm terrified of a biopsy and think I would refuse it.( ignorant I know) Well this may be all for nothing so I will TRY to put it out of my mind for tonight and hope for the best tomorrow. I'm really happy to hear that you only had an infection and not something more serious.The stress of not knowing is a killer.
Sorry you had to go through that. Thanks for your prayers Russ,you're always in mine too. Talk tomorrow, Zoe

Hi Russ,

Thanks for the compliment re my Cancer Group. I think there's a Gilda's Club in NYC, but I'm trying to locate a venue near Penn Station at least initially-more convenient for the majority of people so far and I think Gilda's Club isn't so nearby.

Nope, I haven't heard of the shrink you mentioned but I'll be sure to take a peek at his book on Amazon. I had started out being treated at Sloan Kettering, but they have a full time female shrink (whom I did not see).

I changed hospitals to one that was closer to where I live (the docs are as highly credentialed as they are at Sloan and many came from Sloan as well). It's just easier to drive for a half hour than take the subway for 2 hours ...;)

Gee you made me feel like I'm getting fan mail...;) I'm flattered!

Have a great weekend and thanks for the great suggestions!
Aliza

Hi Russ. Update...I have been taking creon 3 to 4 times a day now, instead of twice a day. I do feel better. Wish I had started sooner.I hope you are doing well.Take care. Zoe

Russ, dysarthria is a side effect of one of the first three cocktail components, possibly leucovorin but it's kinda hard to tell because they all run one after the other, or in one case, two at the same time. I do know that I start to get it before they plug in the 5FU bag. It's sorta like a temporary paralysis of the tongue and speech organs, at least in my case.

Hi Russ: Again please share what you think is appropriate and I'll promise you it won't drag me down. On the ten scale, the lowest I ever get is about a 4 and that's when the dysarthria really kicks in and I can hardly get my tongue around a word, much less have a conversation with someone, or something unexpected happens in public, much as you described, or the terrific lethargy settles in and I can hardly work up the energy to move, none of which happen frequently. Neuropathy hits on a regular basis and greatly affects my ability to type or write. However, the good side is that all these go away between treatments and I know, at least for now, they're just temporary and relief is in sight.

Just last week I had a new event which hadn't happened before; as I was walking down the street I had a sudden nosebleed onset, which is something I can't ever remember having except possibly once as a kid. The only place around was a MacDonalds so I dashed in there and, of course, they had replaced paper towels with a blow dryer and there wasn't a stitch of tp in the place, nor did I have a hanky. But I managed to wash most of it off my face and firmly clamp the nostrils together and made a mad dash for the car where I had some nappies stashed. It scared me and, at the same time, infuriated me because it was just another incident of loss of control over a bodily function which we can all appreciate.

In the hospital I had one night of uncontrollable bowels, soiled the bed twice within 30 minutes and God Bless the nurse who finally brought me some adult diapers. After going thru another four of those my gut finally settled down and I was able to get thru the night.

Then there was the night when I had the nausea attack and soiled not only myself, but the bed, the floor and anything within a 3 foot radius; projectile and uncontrollable vomiting. A gang of 4 nurses showed up for that and I had to strip down in front of all and let them wash me down. I was telling this tale to four friends who stopped by last night to take me out to dinner and we all laughed our asses off at the incongruity (sp?) of it all.

This is truly a cruel and undifferentiating disease.

I wish you well with your own battle. Take care. Mike

Hi Russ: Not sure if I'm replying correctly and hope this gets to you okay.
Thanks much for the positive message. The chemo sort of just beats me down the second and third day and I just have to work thru that and then I'm in a good/better place. From what I understand from other people's experiences my own experience with 5FU and the Folfirinox regimen is far better than some.
If I could just find a way to get my bowels regulated I think I'd feel a lot better generally. Today I'm considering just giving up completely any red meats and sticking with chicken and fish. My appetite, at the moment, is normal and I can eat and keep down a full meal so I'm up a couple of pounds from last week which is always a plus and I'm trying to put more fuel into the system with snacks in between meals as well.
I'll have treatment #5 next Tuesday so I'll be interested to see what the lab numbers are when I go in for that.
My best to you and yours. Cheers, Mike

Will do...take care Zoe

Hi Russ, my Dr. called me about the creon. Right now I only eat toast for breakfast with one 24,000 units and dinner with one. I am not a very big eater.He wants me to try to eat 2 snacks during the day and take 1 creon with each snack. That would make it 4 a day instead of 2. He wants me to try it for 2 weeks and see how I feel. I'll let you know how it goes. hope you're feeling well. Zoe

Thank you for sharing your journey .. I appreciate it as I know it gives so many hope to keep fighting the good fight.

Hi Russ. Thanks for sharing your story as WhatNexter of the week. You've been through quite an adventure. I hope you have many many many more anniversaries.

Hi Russ,I will call my Dr. tomorrow.He probably won't get back to me right away,but as soon as he does I will let you know. Thanks for writing back,take care. Zoe

Hi Russ. He gets the same lump in the abdomin. He had 1/3rd of the pancreas. stomach spleen intestines and bile duct removed. 13 lymph nodes. Nothing spread any further. He also has to watch how much he eats. We try to see if any foods he eats aggrivate it. We can't tell sometimes something will bother and some times it does not. It is amazing what you have gone trough and an inspiration. Tomorrow is blood tes day. I dread it more than he does. You keep up the fight. It is nice too know a real survivor.

How are you feeling? My husband Russ gets some severe pain in the stomach. Do you get them? How are you doing with weight? He lost about 50 lbs. Still has trouble gaining weight.

That is great. My husband same name Russ was diagnosed in 1997. Stage 1. He will be 63.

My Dr. prescribed " TAKE ONE CAPSULE BY MOUTH WITH MEALS " That's what I've been doing for over a year.Can you OD on creon ?
I only eat twice a day that's why it's only two pills.For sure I will call him tomorrow.Thanks,Zoe

One more question...How long before your meal do you take it? I've been taking it right before my first bite, maybe I should start taking it sooner ?

I have just read your incredible story and had to share it out with all my social media friends. You are absolutely incredible and such an inspiration to everyone whether they have dealt with cancer or not. To fight as you have done gives all of us a whole new appreciation for life. From the bottom of my heart, thank you for sharing and thank you for being you. You are truly a gift to all of us and a reminder of just how precious life really is. You will never know what I difference you have made for all of those who have had the privilege of reading your story.

Hi Russ ! That's what I always felt too. As much as I would love to say I have 2 years, I really feel like you do. Surgery is the day It was gone,forever I hope. After all you've been through for the last 12 years,you must be one tough guy.
Well I am only 5 ft.1 and weigh 100 lbs. but pretty tough myself .If you can do it,I can do it !!!
So my 2 year anniversary will be Sept. 7th. That's right around the corner ! Stay well,Zoe

Dear Russ - what a fascinating story you tell! And, congratualtions on being such a long-term survivor, albeit with many, many challenges along the way. I guess all of us who have been diagnosed with pancreatic cancer face similar challenges and our lot is to do the best we can with what we have.
Just to give you a bit of background of my own case, it seemed fairly straightforward at first, but then took a terrible turn. I was diagnosed in mid-April last year and had a laprascopic Whipple about 10 days later. Complications did develop (abscesses on my liver), but I went through treatments similar to those you described: gemzar chemo; radiation & Xeloda; more gemzar chemo. I was diagnosed initially as a Phase IIB. I completed my treatments in mid-February and began, nearly immediately, to fear subsequent CT scans would reveal recurrence. I didn't have long to wait: my very first post-treatment scan showed a tumor in my sacrum bone. I had cyberknife radiation, but my CA-19-9 levels continued to rise sharply. I had to resume treatments and am now on the Fulfirinox regimen - basically for the rest of my life (variously estimated as ranging from 9 months to 2 years) and I'm now classified as a Stage IV patient. I'm having considerable issues with the side-effects of the new treatments and eating has become particularly problematic for about 8 days following each of my every-other-week treatments (it feels like I'm swallowing glass).
All of this said, I remain committed to retaining the most positive attitude I can muster and will continue to fight aggressively for as long as I possibly can - I believe both of these are keys to survival. I haven't given up and although I'm now in a 1% chance of surviving category, I see no reason why I can't fall into that 1% category (although I much preferred being in the 35% category last year - but that turned out to be just an illusion).
I'm also committed to doing whatever I can to bring more attention and research funding to pancreatic cancer. My daughters and I raised funds for the recent PurpleStride walk in Washington DC, and another friend has put together a team for the Puget Sound walk. As well, I've written up a couple of broad-based fund-raising suggestions to Pancan.
It seems that you've written about your experiences. I have as well through a journal that documents the last 14+ months. I've shared it with a few others on this site. If available, I'd love to read what you've written.
In closing, during my 6+ hours of chemo treatments at the hospital every other week, I've begun to write a series of short stories for my grandchildren. During my professional career, I had to travel extensively to transitioning and developing countries - and had plenty of rather bizarre adventures. If I somehow don't make it, at least these stories will survive and give my 4 young grandchildren an idea of who their Grandma was. But meanwhile, I have no intention of leaving this earth any time soon. With best regards, JMS

My husband was diagnosed with pancreatic cancer in October 2011 and had the whipole in November. Hearing aboago you being such a long-term survivor is such an inspiration. I would love to read your book.