December 13, 2009 at 8:23 pm #33675joniandjoeMember
My husband was just diagnosed in early September, but was told that the only option was chemo….(reading posts above, I have never heard of “whipple” surgery). So he has been on 2 different intrav meds two weeks on, 2 off, gemzar is one. They said it’s stage 4 but have never said what type of bile duct cancer it is. So here he is, 73 yrs old, never sick a day in his life…..he can barely walk with fatigue, lost all his muscle mass, and has been battling with the drainage implant which drains the ascites, but that was a huge mistake. Got infected, had to come out, but he’s still leaking….I’m so exhausted trying to work full time, (I’m 57) so I am taking 3 weeks family sick leave…..I still cry sometimes when I’m off by myself, but I’m staying strong for him. They told him 6 to 12 months prognosis. I still feel lost in space…..I’m sure ever other care giver, family member does as well….just trying to feed him, change his dressings, walk him around and make him smile……what else!>>>???December 13, 2009 at 8:00 pm #33674momsdaughterParticipant
I think the emotional roller coaster is just the worst thing and I have had to figure out to take everything slowly and not get ahead of myself, but it is very hard. I just know that there is a hard, long road ahead of us that will eventually lead to heartbreak, so we need to enjoy every moment now.
USC has been a blessing to our family. They are wonderful, proactive, and very responsive. If you need an oncologist in the Los Angeles area, Dr. Lenz is it. Dr. Selby is a great surgeon. Do whatever is necessary to see them if you need help, you will not be sorry. You can find out more information on them on the USC website.
Thank you for being such a support for so many of us out there. Never give up hope! Hugs and blessings to all!!!!!!December 13, 2009 at 12:32 pm #33673lalupesParticipant
I’m so sorry I can’t answer your questions, Mom’s Daughter, but I can & do send you a BIG WELCOME to this wonderful site.
As Lainy said, you’ll get lots of help here.
My very best wishes are winging their way to you & your mum.
JuliaDecember 13, 2009 at 11:17 am #33672lainyParticipant
Welcome, Mom’s Daughter to our family and we are glad you found us but sorry you had to. It really sounds like you have been doing exactly everything just right. From what I understand you mom’s doctor is one of the best.
My husband had a Whipple 4 years ago and is now 77. The CC returned 1 1/2 years ago and we zapped it with cyber knife. It has again returned and we will hit it the same way. When Teddy had his Whipple we were told by 5 doctors and surgeons that chemo would not help his (location and type) but he could do radiation and cyber knife. No one can predict how long a stage will last or what will happen next. I would assume that the doctor has to take everything in to consideration at that time to make his decisions.
Your mom is already a survivor and I know its the hardest thing in the world to want to know what lies ahead, but we just don’t know. I know for sure that you will be hearing from others on our Board with suggestions. For yourself I think you will find it helps to pound out things on the keyboard so pound away, we are here for you and your mom.December 13, 2009 at 6:14 am #2989momsdaughterParticipant
I have been reading this wonderful blog for months, but just couldn’t bring myself to share. I hope this brings hope and help to this community.
My 72 yr old, young, healthy mom was diagnosed with pancreatic cancer in March 09 at a local hospital in Glendale, CA. They thought it was blocking her bile duct so they went in and put in a plastic stent. When they went in, they still thought it was the pancreas and scheduled surgery asap at the local hospital. No way was I going to let a regular hospital treat such a horrific cancer. After fighting with the insurance company and her regular doctor for a cancer center, we were finally referred to Dr. Selby at USC. He is a phenomenal surgeon. During an 8 hour surgery, they realized it was bile duct cancer and he performed a whipple surgery. It looked like they got it all, you just never know… It took her two months to fully recuperate and she began seeing Dr. Lenz at USC. He is not in much because he travels to places like Germany and Belgium to hear the latest European innovations, and he is in high demand as a speaker, but he keeps close track of his patients and his assistant Taline is wonderful. Her pet scan showed enlarged lymph nodes. She began on chemo immediately, taking Xeloda pills daily and Gemzar intravenously, once a week- two weeks on and one week off. She gets cat scans every two cycles (6 weeks).
Her first scan came back with some lymph nodes going back to regular size and some shrinking, with no new enlarged nodes. The second scan came back with some nodes increasing in size slightly (5cm), but no new nodes and it has not spread to other organs. She is stable and we are just plugging along. Dr. Lenz is planning on keeping her on this chemo treatment indefinitely, but it will eventually stop working and he will have to have another plan.
Does anyone know what comes next after this chemo stops working?? She is not a candidate for radiation.
She has had some slight back pain, a little fatigue, and some hair loss, and a lack of appetite (she’s only lost 20 lbs after the whipple and 6 mos of chemo) but no other complications or side effects. We are very grateful for that. She is considered stable, but what does that REALLY mean, how long does this stage last?
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