request for lainey and marions:

Heather,

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

Heather….I am so sorry. I just found this posting from you. Sometimes, I am not able to come on this board for various reasons. Please, forgive me and I will call you asap.
Marion