elainew
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It seems impossible that we will no longer read Jeff’s words of wisdom. We always received so much support, encouragement and chuckles from his posts. Our sympathies go out to his family, and always remember that Jeff made a huge difference to many, many peoples’ lives.
Gary has been fighting this disease for 16 months following Whipple surgery. We have recently been made aware of the benefits of a plant based diet and have been trying to follow it. We juice vegetables, have eliminated dairy, meat and sugar. It all makes sense to us, and we intend to remain close to the diet. It was recommended to us by our nutritionist and acupuncturist. We rely on books (The Gerson Diet and Dr. Quillen’s – Fighting Cancer Through Nutrition) and the internet for recipes. Gary has been able to maintain his weight and even gain some and feel better as well. Good luck!
Pam,
Gary and I are so sorry to hear about your mother. From your posts we know she always received excellent care at Duke and that you were very proactive there. Gary returns to Duke in 10 days for more surgery and we had always hoped we would run into you there someday. You and your family are in our parayers. Elaine and Gary WordenTess,
We’re so sorry to hear about your father. We also thought he had a long journey yet in his valiant struggle. You will certainly find comfort in knowing you were there for him 100% in all ways, and that he knows you’re a strong person who will go on in his absence.We’re praying for you, Gary and Elaine
Hi Tess,
I hope I can help you out by telling you Gary’s circumstances. By the way, it’s a perfectly lousy weekend here – rain, rain and more rain – and a wintry mix expected tomorrow. I hope your brothers are enjoying some inside activities!
As far as the hernias go, we were told from the very beginning that hernia surgery would be in Gary’s future because of the whipple cutting thru all the abdominal muscles. However, noone thought they would be so large. As far as we know there isn’t a connection between the hernias and his leak.He actually has a leak directly from the pancreas because there is a spot that never healed after surgery (a first for our surgeon). He’s had an external drain now for 14 months. He has had quite a bit of leakage(from time to time) from where the tube enters his body and it is always that green/yellow color you described. For most of a year after surgery, the leakage caused infections which resulted in emergency trips to Duke, CT scans looking for pockets of fluid and replacement of the drain (or occasionally adding a second drain). In the last several months though there have been no abcesses – but still the leakage. Everytime they check the drain now, they swear it’s placed correctly and send us home. The docs analyze the fluid regularly for amylase(an indication of how concentrated the fluid is for pancreatic fluid) and the numbers are always high. So…is a pancreatic leak completely different from a bile duct leak? I would think so – and in that case I guess our experience isn’t giving you the answers you’re looking for. Bilirubin has never been mentioned to us – is that because they don’t see anything on his liver?
Gary was also on Gemzar which he was never able to complete because of all the infections. Then his numbers started to rise , so now he’s on Folfox. He hasn’t had a lot of difficulty with it(3 treatments so far) – the usual fatigue, several days of stomach upset(no vomiting), loss of appetite and some sensitivity to cold. That doesn’t seem to be as severe as others have described – maybe because he avoids the foods and situations that would set him off. He’s always cold though – sometimes wears mittens to bed!
I hope you’re Dad gets some relief soon without having another drain placed. And that the sun begins to shine in the Southern Tier to boost everyone’s spirits!! It sounds like your Dad and my husband are doing their best to confuse the doctors, but at least they get their attention.
Good luck, hang in there (do we have a choice?), and we’ll keep you in our prayers.
ElaineGary also received SS disability in record time. The money was in our account before we even received a letter approving us. He received retroactive pay (minus the 5 month waiting period) from the day he initially went to our local ER with jaundice. Our interviewer was SUPER! He was the one who encouraged us to apply for the retroactive and even assisted Gary’s employer in wording of the form he was obliged to complete.
As has been said before, it’s a hell of a thing to have to be thankful for…but we certainly are. Elaine and GaryThanks, Lainy. Gary also went the “dry” route for 6 weeks. Then they put him on heavy duty antibiotics daily thru a PICC line for 3 months – wanting to put off anymore abcesses from the leak. NOTHING has stopped the leak – the first one not to heal itself in 15 years of our dr.’s practice. Recently Gary’s CA-19 numbers have risen slightly but consistently. Nothing shows on the CT scan, but he is on chemo again.
It’s been a long 14 months. All of Gary’s problems since surgery are the result of the first incision getting infected, having a second surgery to repair that, then having a wound vac for months, along with the leak, drain, numerous abcesses and hernias. So many things have been put on hold over and over. Radiation, chemo, hernia repair surgery, ability to get any exercise, eating and digestive problems. Still we feel lucky for even being able to have the Whipple in the first place – so many others can’t. It’s nice to hear that most people don’t have such a difficult time getting over the surgery. When we asked our dr. if the drain left in after this next surgery(April) would heal correctly, he replied that he can’t believe lightning would stike twice. CC seems so unpredictible that I’m not so sure about that, but we continue to be hopeful, have a wonderful support system, and rely on the wisdom of so many people on this board for answers and encouragement.
Suzanne,
Regarding your question about biopsying the bile ducts – Gary had only a “thickening” of the bile duct wall when they did the ERCP to get a diagnosis. The first day they did a brushing of the inside of the duct, and the second day they tried to do a needle biopsy, but there wasn’t any growth to go into. The result of the brushing was “atypical” cells, and he went on to have a Whipple which confirmed CC. Good luck with your surgery!
ElaineKay,
We received a call from our dr.’s office yesterday saying the spot on Gary’s liver was “vascular profusion” – not cancer. She said that means its an area of the liver that is more suseptable to the dye used for the CT scan. That would be great news for us (if it’s true, because it contradicts what the dr. and onc. told us) – except that his CA-19 IS up so most surely there’s cancer brewing in there somewhere and we will continue chemo. But in your case maybe it’s not any additional cancer at all. Here’s hoping and praying for you. ElaineKay,
My husband, Gary, had the Whipple one year ago with clear margins and nodes. He had a CT scan last week which shows a spot on the liver (not seen 2 weeks earlier). They want to biopsy it because his CA-19 levels HAVE gone up some over the past 2 months, but the spot is in a “difficult” place so may not be able to get at it. Your dad’s situation sounds different though because of his bloodwork, and here’s hoping and praying you get good news quickly.
Elaine
Lainy and Marion – Thanks for your replies. We just had our onc. consult here at Duke and are going with 5Fu and oxal. Gary will get a 2 hr. drip then the 46 hr. pump – then be off for 2 weeks. I guess I was mistaken about the Xeloda in combination with this. Talk about information overload. Lainy, the answer as to why Gary has had chemo already and so much is because it was decided to take an agressive approach after surgery. He started getting radiation and Xeloda but had to stop after 2 weeks because of infections and hospitalization from his drain. Just recently his CA-19 went from 29 to 49, so chemo was restarted (Gemzar). Due to low platelet and/or white blood cell counts and then another emergency trip to Duke for drain malfunction, Gary was never able to complete a cycle (2 weeks in a row). So he ended up having 4 oddball treatments…and that brings us to this week with the CT results and CA-19 to 98. Gary’s pancreatic leak has been a constant source of problems – interferring with everything they try to do for him. Our surgeon (Dr. Doug Tyler) tells us Gary is his first patient whose pancreas hasn’t healed on its own. Our Luck!!! To everyone -Thanks for all your help all these months. Eventhough we haven’t been contributing to the forums, I have been faithfully reading and learning. It feels good to be a part of the family!!
Kirsten,
Your dad has very similar circumstances as I. Although, I had the whipple, my report was almost identical to your fathers. Only difference was my 2.5 cm tumor was in the distal portion of bile duct. The oncologists at Duke Medical and my surgeon, as do I, agree the more aggressive you can be in treating with chemo at this early stage the better. I am 1 year out from my surgery but still after some addition surgery scheduled to repair a hole in my pancreas. My CA19-9 which is a cancer tumor marker blood test was 17 after my surgery (41 or below is considered OK) but has risen back to 49 and I am back on chemo again.
It sounds like your dad has had great results! Best wishes for his continued good health!
Gary WordenHi everyone,
Had my oncology appointment today and couldn’t get gemzar treatment because my white blood count was zero. Started three days of shots to assist my bone marrow in producing white blood cells. Is this the normal protocol most people have experienced?
thanks, GaryHi Jeff,
This will be the first time my surgeon has had to go back and fix a pancreatic leak after a whipple. He has done about 700 of these over the past 15 years. He really doesn’t have an answer as to why I have had so many infections and complications. I had my surgery done at Duke Medical Center by Dr. Douglas Tyler. Great surgeon but patient’s body hasn’t been very cooperative in responding to treatment. I am now having more good days than poor ones and am feeling really positive about my recovery. I’m hoping the chemo will kill off the remaining cancer cells. Thanks for responding to my original e-mail!
Gary W
