1

(27 replies, posted in Introductions!)

We were initially planning to enroll in the U Penn trial. But traveling from the midwest to Philly for treatment was presenting major logistic difficulties. Meanwhile we were also looking at the Vienna (Austria) study that uses gemcitabin, oxaliplatin, and cetuximab. In the past week, we have been able to convince our insurance company to cover treatment following the Vienna protocol. The great news is that the company has agreed. I will now be able to get my treatment locally!!! What a relief!

Meanwhile we did a PET/CT earlier this week and had a port placed on my chest yesterday. The PET/CT confirmed high activity at the site of the main tumor as well as several lymph nodes in the abdomen. My oncologist plans to monitor this activity and two tumor markers during treatment. I begin chemo day after tomorrow. It's like starting a new chapter!

2

(27 replies, posted in Introductions!)

Marion, that is the trial. We visited with the PI at U Penn on Tuesday. The challenge is logistics. I stay and work in the midwest but the treatment can be done only at U Penn. We are working with a local oncologist to administer the gemcitabine on day 8 near home so that I travel to Philly once in 3 weeks. The trial has 19 patients enrolled so far between ages 26 and 72+ (?). Some patients have done really well - one has completed thirty 21-day cycles. Others have had severe reactions to one of the drugs and had to be hospitalized.

My post surgery recovery is going well. I lost about 8 lbs but my appetite is back. Will be getting my base level CT imaging done next week. We are looking at March end to begin chemo.

3

(27 replies, posted in Introductions!)

My Whipple procedure was abandoned when the surgeon at MSKCC noted that the cancer cells had metastasized to some lymph nodes in the abdomen near the aorta. They took out the gall bladder and created a bypass for the bile to drain directly from the liver to the small intestine. Plan B is to use chemo to control further spread of the cancer cells.

It has been 10 days since surgery and my recovery is proceeding well. We have learned about a clinical trial at U Penn that uses a monoclonal antibody in addition to the two standard chemo drugs used in recommended treatment. We plan to visit the PI of this study today to learn about pros and cons and my eligibility to participate in the trial. The plan is to start on chemo in the end of March or after 4 weeks after surgery.

4

(27 replies, posted in Introductions!)

Thanks Jim and Lainy. Surgery is this Friday at Memorial Sloan-Kettering.

5

(27 replies, posted in Introductions!)

My surgery is scheduled for late next week. We head for the Big Apple midweek. Chocolate is my favorite too ... I hope it still tastes as good after surgery!

I was told that the surgeons now use staples instead of sutures to put everything together at the end of surgery. Can anyone tell the pros and cons of using staples? What are the staples made of? Are they permanently in place?

Bushra,

I was diagnosed of CC three weeks ago. I had been feeling very itchy and had mild jaundice like symptoms. A blood test showed high liver enzymes and bilirubin. A followup CT scan revealed constriction of the bile duct. A plastic stent was placed to drain the bile and that provided relief from itching and jaundice-like symptoms. Biopsy showed malignancy. In my case the tumor is located on the distal bile duct close to the pancreas which describes about 25% of CC cases. I have no symptoms (weight loss, fever, appetite loss, pain) though lately I feel like I get tired more easily.

I feel someone should be asking your uncle's doctor more questions to learn about the location and staging of the cancer. What tools did the doctors use to detect the tumor - CT, PET, MRI? I agree with others that your uncle should consult another physician. If your uncle has a doctor in his friend/family circle in India, he may want to ask help from her/him to discuss your his situation with the physician who is taking care of the CC.

Wish you and your uncle the best.

Rudy

7

(27 replies, posted in Introductions!)

Thank you everyone for your support and encouragement. I feel very fortunate that the tumor can be surgically removed. I am told that the exact staging will become known during surgery. We stay in the Midwest and have selected Memorial Sloan Kettering for surgery after researching hospitals and surgeons with good experience in Whipple. We had a good visit with my surgeon on 2/8. He prescribed antibiotics (ciprofloxacin) to prevent infection around the plastic stent. I am trying to gain a few pounds these days pre-surgery. I was told everything will taste like cardboard for several days after surgery and the loss in appetite will lead to a loss (10 to 20 lbs) in body weight.

Best to you all!

Rudy

8

(27 replies, posted in Introductions!)

I am glad to come across this great resource and support network. I am 42/male and was diagnosed of CC Jan 29, 2011. I had been on international travel in early Jan when one day my whole body started feeling itchy. My first thought was that it was an allergic reaction. A local dermatologist prescribed Prednosone and antihistamines. These did not provide any relief. Upon returning to the U.S., I stopped taking my regular vitamins and noted a yellow coloration of urine even when I wasn't taking B-complex. My wife searched the internet and discovered that the itching and discoloration of urine could be due to jaundice/hepatitis. A visit to my PCP and blood tests revealed high liver enzymes and bilurubin levels but tests were negative for the hepatitis panel. My PCP recommended a CT scan which showed blockage of the bile duct. My GI doctor was able to perform an ERCP on the same day, and installed a plastic stent and withdrew brushings for a biopsy. The stent provided immediate relief to the itching and the urine color became clear over the next day. The biopsy revealed atypical (malignant) cells. The CT and ERCP x-rays showed a tumor in the distal bile duct. So far I do not have other symptoms such as pain, fever, loss of appetite or loss in weight. I am scheduled for surgery (Whipple procedure) late next week. The doctor specializes in surgery related to cholangiopancreatic cancers. I would appreciate any information about what to expect and how to prepare for life beyond a CC diagnosis!

Rudy