1

(25 replies, posted in Members' Cafe)

I like the new name with "connection" in the title. The location works for me too.

On Sept 30, I am starting on a 6 week plan of radiation and oral Capecitabine (Xeloda) 5 days per week. If all goes as planned, it should end by the second full week of November.

It's hard to accommodate everyone, so if I can't make it to the November meeting, I'll try for the next one.

Hope everyone is doing well.
Chris

2

(25 replies, posted in Members' Cafe)

After 6 months of dealing with cholangiocarcinoma, it was great (for the first time!) to see and meet others who are in the same boat. I walked away feeling a great sense of camaraderie. The message board is terrific, but nothing beats face-to-face conversations, especially about something so important. I'm so glad it worked out. Looking forward to seeing everyone again and hoping others will join.
Chris Lawler

Hi LadyLinden,
So sorry to hear that you're dealing with this. It's been only 6 months since my diagnosis, and I'm still figuring it all out.
My experience with chemo might not be the same as other people's, but I can't encourage you strongly enough to give it a try.
For me the choice was easy. I was diagnosed in March, and suddenly, before having a chance to start chemo, I got very sick--loss of appetite, fatigue, weight loss, nightly fevers, and occasional vomiting. The insertion of stents gave me immediate relief, but my doctor told me I only had "a few months" if I didn't start chemo. I felt I had nothing to lose, and I expected the worst based on my prior knowledge of chemo from old movies.
In the five months of going through chemo, I have vomited only twice (one time after each of the first 2 treatments). I have had slight bouts of nausea for a day or two afterwards and some profound fatigue in the beginning, but I have not vomited a single time in 5 months. My fevers diminished after 2 weeks and have not returned. A CT scan after 3 months showed that all of my tumors and involved lymph nodes have shrunk. The primary mass in my liver was reduced by a third. I have been feeling well enough to travel, bike, walk, and spend lots of quality time with friends and family (though I am no longer working).
My weight gain (15 to 20 pounds-depending on the day) can be attributed to a number of reasons. At first I lost weight, so once my appetite returned I treated myself to whatever I wanted to eat to get back to my normal weight. Plus, before I got sick, I was used to being very active (working out and running) and my normal eating habits included many more calories than I can burn now that I'm less active. Furthermore, I'm doing a little bit of comfort eating as a consolation for having cancer--why not have dessert? and French fries? Pizza? Sure!
The doctor also said my weight could be affected by the steroids I get during chemo treatments. She has now recommended that since I'm not getting nauseous, she will eliminate the steroids.
I did not lose any hair, but I resolved that I wouldn't care if I did. Maybe a guy can get away with that easier than a woman can?
After 4 months I had my first setback. The cisplatin did cause some hearing damage, so they stopped it immediately and replaced it with carboplatin which is much less toxic. The hearing loss is not a big deal. It's more noticeable in a crowded restaurant than in a small room. I have that echo-like feeling you get the day after sitting near the speakers at a loud concert.
Overall, I am very happy with the results of the chemo. I never thought I'd feel as well as I do now.
If you'd like to contact me personally for more information, you can e-mail me directly at christopher.lawler@yahoo.com. I wish you well. It's great that you have a local support group.

4

(10 replies, posted in Introductions!)

Erika,
There's talk of getting a small support group together to meet at a restaurant in New Hope, Pa. Let me know if you might be interested in joining us.
Chris

5

(30 replies, posted in Members' Cafe)

Count me in from Cherry Hill. New Hope is only 45 minutes away.

marions:  I was told by 2 oncologists that I am ineligible for radiation.
SW55: Thanks for the information about the stents. I was originally told they last 2 to 6 months and I have just past the 5 month mark, so that makes sense.
Thanks for all the great feedback! It helps to know I'm not alone.

marions,
Thanks for your response. My scan after 3 months of the gemcitabine/cisplantin routine showed a significant reduction in the size of the main mass--about 35% smaller. All satellite tumors and lymph nodes in the abdomen and chest also shrunk. My bloodwork is fairly good except there's been a recent spike in alkaline phosphatase. The chemo helped drop it back to the normal range at 112 for 2 weeks; then, it spiked to over 300. The doctor said it was likely related to the progression of the cancer and not a result of the chemo.

Thank you, Mparsons and Lainy.

I am being treated at the University of Pennsylvania (Abramson Cancer Center) in Philadelphia. That's where I went for my second opinion after my original diagnosis at Cooper Hospital in Camden, NJ where I had a stent procedure that provided immediate relief.

I was diagnosed with stage 4 cholangiocarcinoma on March 4, 2013. I have been getting treated with Gemcitabine and cisplatin (3 times a month) until the cisplatin started causing hearing damage. I will now be getting carboplatin instead.

Overall, I'm tolerating treatment well. I feel good and have gained 15 pounds, but I'm wondering if I should be doing something more. I'm just curious if anyone has had any success with alternative treatments or more aggressive therapies.

I'm also feeling a bit isolated. There are no support groups in my area that are suitable for me. Wondering how I might connect here or on another website with local people willing to meet face to face in the Philadelphia / South Jersey area.