elainew
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Kris,
I have no idea yet what the prognosis and/or treatment for this could be. The oncologists have had to back off until the lung issue was settled. Gary had run out of options for chemo – except for Taxol which was only a 5% chance, not worth the side effects. I’m hoping some others on the board can lend advice or answers. We are usually very optimistic and upbeat, but right now my gut tells this is very bad and to expect the worst. I am in shock and scared.Lisa,
I understand your predicamen exactly! We had a wonderful kitty named Maggie who kept me company during the long days and months after Gary’s Whipple surgery and then during chemo. I had the time then to play with her, be around most of the time, and enjoy her. Now our life has changed quite a bit, and we were making trips to Duke that sometimes lasted for weeks at a time. We also leased a condo in Florida and were able to get there for a couple of short stays. Our neighbor was kind enough to watch Maggie, but that was hard on everyone. When we decided to go to Florida for most of the year, I was heartbroken that they wouldn’t allow pets and would have to find a new home for Maggie. I refused to put her anywhere that she would be in a cage while waiting to be adopted, so I started putting up flyers at the vets, grocery stores, retirement homes,etc. I was amazed at the response and was able to find her a good home.
It wasn’t easy for me to give her up, but I am so glad it happened. The demands of all our lives going through ilness is burden enough. Priorities are EXACTLY what we need to examine. Eventhough Maggie was relatively easy to care for, life in our household is much simpler now, and I don’t feel the guilt of knowing I was leaving her alone, not having the time to play, etc. Good luck with whatever you decide. Elaine and GaryHeather,
I just thought I could ease your mind a bit. My husband also goes to Duke. His surgeon for the Whipple was Dr. Tyler – we have been very pleased with the care we’ve received there and have found that the surgeons, oncologists, radiologists, etc. are readily in contact with each other. Having said that… except for Whipple complications, Gary was progressing nicely as far as nothing showing up on scans for many, many months. He’d done some radiation and chemo and was still visiting Duke regularly for drains, abcesses, etc. During one of those visits something showed up on his liver, and we received a visit from Dr. Tyler. We should have guessed the news was not good as he arrived in Gary’s room alone instead of with all the residents and interns. The point to my story is that he gave us the “gloom and doom” talk – suddenly started spewing the grim statistics. We were reeling from the news itself and then from his prognosis. I even started to faint, so he had to come to my aid (hopefully that served as a reminder to him that we ARE all human beings with emotions and fears – not just a medical file). Anyway…we had an oncologist visit our room the next day and told him about the prognosis we had been given. His reply was that Dr. Tyler is a very skilled surgeon BUT he’s not an oncologist!! Our experience since then has shown us that you have to be diligent, resourceful, and willing to spend time researching – but that there are many options out there (and others being investigated) that give hope.
You and your sister will discover these things for yourselves as you proceed through this journey. But it is not hopeless, nor do the doctors know what path each person’s disease will take. Gary and I received the bad news last week that his chemo has stopped working and our local oncologist said she had nothing more for him. We grieved for a day or so and then started online and on the phone. One week later we’re established with a different oncologist who is much more proactive, and Gary has been approved for a targeted therapy we’ve been looking at, have another one we’re also considering, and are researching clinical trials.
Sorry this is so long – but we feel so strongly about being hopeful and hanging onto your faith. And the most important thing is that you’re there for your sister – you’ll do the things she doesn’t feel up to. Hope this has helped. Elaine and Gary
April,
You will be so happy you have found this board!! Everyone here is positive and helpful, and you will get all your questions answered – or at least get different perspectives for your particular situation. My husband, Gary, was diagnosed in Oct. 2007, had the Whipple, radiation, and chemo and is now looking into targeted treatments to the liver. It’s been a long, tough journey, but this board has been my salvation and closest friend. We wish you and your mother the best and are glad you’re now in the hands of a knowledgable CC doctor.
Prayers to you, Elaine and GaryWe just received a call from BCBS that Gary DID get approval for the SIRT procedure. We’re amazed(and a little skeptical) that it happened at all – much less so quickly. In the meantime we’re still waiting for word from Dr. Nelson at Duke for RFA and from Dr. Clary, the liver surgeon at Duke. Once we gather all our information, then we’ll decide which way to go. We’re extremely grateful that we have a way to go at all. Last week things looked much dimmer.
Just one more thing to throw out there – can liver resection be done through laparascope?
Ashley, we are hoping and praying that your mother gets approval for her transplant!Hi Dee,
We’re glad to see you’ve joined the board. You’ll get wonderful support and information here. Is Lenny still feeling better? Gary is having a much easier time after chemo this time – and what a blessing since we’re on vacation. We’ll talk to you sonn. Prayers to you! ElaineGary had a HUGE hernia after his Whipple, and it bothered him tremendously. They didn’t do anything about it until 16 months after his surgery because he had so many other things he was dealing with – a bile leak that never healed, drains, infections, a wound vac, chemo, radiation. Finally he, his surgeon and oncologist made the decision to suspend chemo for the time it would take to do another huge surgery in an attempt to repair the bile leak (it was successful) and the hernia at the same time. His original surgeon fixed the leak and then a plastic surgeon took over and repaired the hernia by doing abdominal reconstruction (basically a tummy tuck). He also neatened up alot of the scar tissue,etc. The results are amazing. The decision to proceed when they did was an issue of quality of life. We’ll never be sure if the time off from chemo resulted in the cancer spreading to his liver or not, but we still feel it was the right decision.
If your hernia isn’t too large or uncomfortable you may be able to just wear an abdominal binder. Good luck!Hi,
Your history with cc is very similar to my husband, Gary. He was diagnosed in Nov 2007 and also had his Whipple on Dec. 11 (but in 2007). His margins were clear from the surgery and the outlook was promising. However he also had complications – infection that meant a second surgery on Dec. 22, a wound vac for months, a bile leak that wouldn’t heal, many trips back to Duke for abcesses and more drains. He started chemo (Xeloda and Gemzar) and also radiation, but had to stop treatments because of the infections. Nothing ever showed up on his ct scans, but in December his CA-19 levels started to rise so he began Folfox. That was bringing his numbers down, but then he had to stop again in order to have surgery to finally repair that pesky bile leak and a huge hernia. He has since resumed the chemo plus Tarceva, but a recent CT scan shows a spot or two on his liver. This came as a complete shock to us. After 3 rounds of chemo his CA-19 count is the same, and he is scheduled for another scan in 2 weeks. If the cancer is growing he will stop chemo. We’ve been investigating clinical trials and targeted therapies, but the problem with the targets is you know there are other cells in the body that will be missed. Cisplatin has been mentioned as a possible way to go – don’t know much about that. At this point we’re praying the chemo is working.
I understand your dilemma about getting the second, third opinions – but our experience has been we always learn something new or see the situation from a different perpective after talking to another doctor. Good luck with your fact finding – and blessings to your supportive family.My husband, Gary, had the Whipple performed at Duke by Dr. Tyler. We are used to seeing Dr. Clary’s name posted by patients’ rooms all the time on the second floor. Our experience at Duke has been nothing but the best (except for the reason you’re there!). The nurses are exceptional and everyone is very friendly. Gary had many complications from the Whipple (infections, leakage of bile, etc.) but each case is different and his was out of the ordinary. Expect to see many residents that are on your doctor’s rotation, and some of our best information came from them. The rooms are oddly shaped and difficult to manuever, but you take that for what it’s worth – the care is the important thing.
Gary spent longer than usual in ICU after the surgery because there wasn’t a room available on the step-down unit (nurse to patient ratio is 1 to 3). After that you are sent to the regular surgical recovery unit (ratio is 1 to 4). Because of complications, Gary was in the hospital for almost a month, but like I said, his wasn’t the usual case.
After care has been very thorough. Generally you return to the doctor’s clinic (held one day per week) 2 weeks after surgery. They follow you up with radiation or chemo consultations (doctors from those teams might see you while you’re still a patient in the hospital), and then repeat visits are done about every month for bloodwork, ct scans, etc.
Let me know if there’s anything else you wonder about (buy a package of 10 parking tickets for $25 in the hospital gift shop) – otherwise you pay $6 everytime you use the parking garage. If you need a convenient hotel – The Brookwood is good – walking distance and they give hospital rates.
Good luck. Your sister will be in good hands. Take care! ElaineGary’s surgeon is Dr. Douglas Tyler at Duke. His oncologists are Dr. Rebecca Cody in Conway, SC and Dr. Mark Moskowitz in Naples, FL.
Kris,
Living with this disease seems to be a constant readjustment of perspective. It seems like you just get used to where you stand, and then they throw a curve at you, and you’re living with a new “normal”. But the wonder is that we DO adjust – given time – and then start the process of gathering new information, talking to more doctors, and waiting for new (and hopefully better) results. You’re in our thoughts and prayers. Elaine and GaryAshley,
Thanks for your reply. We’ll let you know how we make out with Dr. Kennedy next week. Will also look into Mayo – thanks for the suggestion.Hi Roger,
It’s wonderful to hear about someone fighting this disease being able to get out on the golf course! That is my husband, Gary’s, goal. He’s had a tough time recovering from the Whipple 1 1/2 years ago and chemo as well. We’re investigating SIRT now(Dr. Kennedy at Wake) because of spread to the liver, but don’t know yet if he’s a candidate and evenso doubt that BCBS will cover it. Were you approved for it due to being inoperable and did your insurance pay up? Gary has been deemed Stage 4 now because of the spread but has not been given a prognosis. He just restarted FOLFOX which has worked for him before. The best to you and keep slaying them on the golf course! Gary and ElaineMarion,
Thank you for being our eyes and ears. The struggle with CC is so difficult , and there are only so many hours in the day for individual research while also actively caring for our loved ones. We appreciate that you and Pauline are this committed to the cause. Thanks, Elaine and GaryGary and his brother and I have been scouring the internet and making phone calls since finding out he has a tumor in his liver. Our most substantial lead has been to send his records to Dr. Kennedy at Wake to evaluate him for SIRT. There are also ongoing calls to Blue Cross Blue Shield – naturally a sticking point! They claim our coverage only gives an oral approval before any treatment and then may or may not actually pay after the fact. That doesn’t sound right as Gary has had 2 huge surgeries and many expensive drugs and treatments, and there was never a question of coverage. Anyway…we’re still pursuing it, will be getting a case worker but expect they’re going to say we still have other options open to us (chemo and possibly surgery).
We’re also still searching for clinical trials for any of the targeted therapies. Thank you for your responses to our original post. Elaine and Gary
