rudyb
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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!
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.
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.
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
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
