1

(11 replies, posted in Good News / What's Working)

Thank you all for the wonderful well wishes!  The support from all of you and this website are uplifting and encouraging. 

Unfortunately, the trip to Hawaii was a bit more tiring than we'd hoped - traveling with two children (ages 2 and 10 months) such long distances can be exhausting.  But:  my wife and I and another couple have a Vegas trip planned for November - this time kids will be staying with grandparents so it will feel like more of a "real" vacation for us.  While we're in Vegas we will be making some arrangements for our "Renewal of Vows" ceremony which we'll do in June with family and friends and the same officiant who married us in Alberta.  The point is to counter the frightening events of this year with wonderful things to celebrate - and why not?

2

(11 replies, posted in Good News / What's Working)

(my background story is here:  http://www.cholangiocarcinoma.org/punbb … p?id=6103)

It's been just over 7 months since my liver resection.  Last week I completed 4.5 weeks of Gem/Cis chemotherapy.  I tolerated it well.

This morning I met with my surgeon, Dr Oliver Bathe at Foothills Hospital in Calgary, to review my MRI report which shows no recurrence.  Yay!  I'll have my next MRI in December, fingers and toes and everything crossed.  Meantime, my wife and I and our 2 young sons and her family will take off to Hawaii for a vacation - 14 of us in a big house on the beach.  Something good to look forward to.

See:

http://www.news-medical.net/news/201105 … icide.aspx

And also...

http://cancerprevention.aacrjournals.or … 7.abstract

This abstract is focused on hepatocellularcarcinoma (HCC) but maybe it could have relevance for CC too?

http://www.ncbi.nlm.nih.gov/pubmed/21258859

I can very much relate to your story.  Not that long ago I was in a similar situation to your mother.

I'm a healthy 50 year-old male in Canada; was diagnosed with cc December 21, 2010 and had the same operation your mother had on January 27 of this year.  My pathology report showed clean margins and no spread into lymph nodes or other tissues.  It's now 3 months since the operation and I feel great.

My surgeon and oncologist both strenuously recommended adjuvant chemotherapy.  I got a second opinion from another oncologist who agreed.  Now that I was finally feeling strong and healthy again, facing the prospect of chemotherapy seemed like a huge step backward; but really, there didn't seem to be much choice.  The problem is that even though the pathology report was encouraging it's possible that there are still microscopic remnants of the disease lingering in my body - cc is a pernicious cancer with a depressingly high rate of recurrence so there's no reason to take any chances.

Reviewing my options, I saw four scenarios:

1.  I don't do chemo and I don't have a recurrence
2.  I do chemo and I don't have a recurrence
3.  I don't do chemo and I do have a recurrence
4.  I do chemo and I do have a recurrence

Since I don't have a crystal ball, I felt I couldn't take a chance on #1 (above).  If I do #2 I'll never know if it was the chemo that helped me avoid a recurrence; but the main thing is to try and avoid/delay a recurrence even if it means undergoing the toxicity of chemo.  With #3 - if I don't do chemo and I get a recurrence, I'd certainly regret it and wonder that maybe the recurrence was avoidable.  #4 is the worst scenario:  the chemo didn't make a difference or maybe it gave me a bit more time?

After reviewing the above 4 scenarios I quickly came to the conclusion that I want to do chemo, since my underlying health is good and that I have a young family and many good things to look forward to in life.  Maybe I'd feel differently if I was very old and my underlying health wasn't so good.

I started chemo Monday May 9, 2011 - a combo of gemcitibane/cisplatin - and while it's only been a few days since my first treatment so far I feel very good.

A few pics of me/family before, during and after operation:

https://picasaweb.google.com/1066005584 … directlink

May your mother go from strength to strength!

6

(11 replies, posted in Introductions!)

Thank you all for providing me with such warm and positive feedback!  This site is a wonderful thing for us CC patients.  I'm hoping I will tolerate the forthcoming gem/cis combo reasonably well; some of the posts about that topic have been encouraging.

7

(11 replies, posted in Introductions!)

Thank you Bob and Lainy for those very thoughtful and encouraging replies!  It does feel good to participate in this site and especially to receive feedback from both of you as I've been following both of your posts for the past few months.

Some photos:

https://picasaweb.google.com/1066005584 … directlink

8

(11 replies, posted in Introductions!)

Here

Hi Jenny Lou - I just read your post and while my reply may be late/irrelevant at this point I offer the following:

I am originally from Toronto, now living near Calgary and was diagnosed with CC December 21, 2010.  In researching this rare disease I noted that it was 7 times more common in Israel and so I figured that an Israeli surgeon would likely be most familiar/experienced in this area.  A family friend was able to contact Dr. Laurie Blendes - a liver specialist of world repute - on my behalf; formerly of Toronto and now living in Israel Blendes is familiar with the capabilities in both countries and indeed the world as this is his area.  He advised that the best team is actually in Toronto at the Toronto General; it was led by  Dr. Bernie Langer until his recent  retirement and now is led by Dr.  Bryce Taylor and Dr. Paul Grieg.  Blendes advises that they can provide not only the best surgical experience re the liver but have the  medical and transplant backup depending what proves necessary.

I hope this information is of some help to you and your father.