jim-wilde

Deb, I have used the chemo brain excuse for over two years! I use it all the time … it’s really very useful!! Don’t consider it a flaw at all. Also, I would be inclined to reject the 12 month prediction and plan to fight like a cornered rat. This is certainly a pernicious disease, but there are hopefully other medical weapons not yet used. I have a good friend that I continually struggle to find new, useful directions for treatment. The people here are great and will continue to support you in any direction you choose. Good luck in finding a new treatment plan.

Where are you being treated?

Pam, I found website over a year after I had a resection and share your opinion of this website. I’ve emailed, spoken to and met a number of truly wonderful people as a result of having cc. I found this website quite by accident when I Googled ‘Cholangiocarcinoma’. The disease is sufficiently rare that it’s hard to find good information, and this site is a god send to caregivers and patients.

I have trouble spending a lot of time here, but do come fairly frequently. The people here truly understand and are caring. Bless them too.

Little vents (and big ones too) are just fine here. Lainy, that’s just pathetic that Peyton’s family built a cancer center that doesn’t treat cc, although, truth is you don’t just grow a major cancer center very quickly AND there are very few of them in the US. It’s the only place I would consider for cc.

Pam, I can tell you from personal experience, you may develop a very special relationship with Lauren’s onc. I had a moment of uncertainty a few months ago after several years of clean scans. My onc, a lovely young woman named Abby, came into the examining room, was very aware of my nervousness over the results of the PET/CT, immediately said it was clean. She got an immediate response from me of a hug and a kiss. I’ve had one more visit with her, and it ended with a hug. … and this at a hospital with 29,000 employees. The onc secretary and one of the nurses now also greet me with a hug and a kiss. I never would have thought it possible several years ago. The healthcare professionals are very aware of what patients are going through and want everyone to have nothing but good news, although that’s not always the case. I’m still in a period of some uncertainty, and the short term plan is frequent scans and blood tests. It’s been the blood tests (hepatic function and CA 19-9) that have caused the uncertainty. Hope for the best possible, but understand there may be some setbacks along the way. And don’t let the setbacks wreck you! Try to stay focused on only positive stuff.

Best of luck with Lauren’s treatment and scans.

Kris, good luck with the upcoming meetings. This cc crap ain’t for sissies! I’m really excited about the effectiveness of the infusion pump in reducing lesion size. I’m hoping surgery is in your short term future. If you wouldn’t mind, I may want to email you soon to discuss the infusion therapy. I have a friend who may need to borrow your craggy old troll!

Susie, I’m an old fart, so young adult support groups weren’t in my future. I had a resection 4/09, and so far, am clean. I had six months of adjuvant Gemzar a few weeks after surgery. I’ve gone through a recent period of uncertainty (increasing CA 19-9’s and slightly elevated bili numbers), but that seems to be resolving. Our plan is to have PET/CT scans at 3 to 4 month intervals (instead of six months), and to have hepatic function and CA 19-9’s done monthly for the next year.

I can tell you that the further out in time from your resection that you stay clean, the lower the chance of recurrence. I pretty much count on a great family plus a few cancer ‘buddies’ as support vehicles. I can also tell you the anxiety level moderates a little as you go out in time, but to be honest, the recent blood test anomalies had me more than a little cranked. My onc, very sensitive to this, told us immediately of the CT result as soon as she entered the exam room in August. My reaction was equally immediate: a hug and kiss for onc Abby. I just had another scan last Wed. and it was clear also. I guess you just need to try not to go over the edge with every bump in the road. Being young also has benefits in terms of resilience. If you are as lucky as I’ve been, you will meet some really fantastic people along the way, beside some of the very best doctors, nurses and techs, that you never would have known if it hadn’t been for cc.

While the odds aren’t great regarding recurrence, you have to proceed with the presumption you’re going to be one of the lucky ones. It’s also good to have a well crafted followup plan.

Good luck and nothing but great scans.

Shari, I would be inclined to revisit the lung tissue pathology report with someone able to tell you in detail exactly what was found. If it’s a cancer unrelated to cc, that’s a very good thing generally, since many lung cancers do not share cc’s proclivity to recur. I was very fortunate to have a Dr Halmos (pulmonary cancer specialist) at NY Presbyterian, who was the one who took over an hour to very carefully review the lung path report. “NOT cc” is a wonderful thing generally. My fear was that liver/bile duct cc had popped up somewhere else. My lung nodule was an ademocarcenoma totally unrelated to cc. What is ideal also is for the lung lesion to be contained and totally removed by surgery.