2nd Opinions
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Tomorrow will be 4 weeks since my husband’s surgery and he is still in the hospital, although very close to being able to go home. The abscess migrated infected fluid into his right lung and he ended up needing 2 chest tubes for a week, which were taken out yesterday. It has been frustrating to deal with one complication after another, but we are seeing the light of a possible return to home in the next 4 days.
He is eating (and LOVING) solid food and taking long walks. He did have a small fever early this morning, and at this point it is the Infectious Disease doctor who will determine how long he needs to stay in the hospital. They do not want to send him home until they are certain he will not develop another infection.
He will need to be on 3 antibiotics for an additional 2 weeks, so chemo cannot start until then. At this point, the liver board here in Spokane has recommended that he begin with just chemo, Gemzar & Cisplatin.
We have decided to get a second opinion and would like to try the Mayo Clinic. Does anyone know the difference in care between the Rochester and Scottsdale locations? Any particular doctors you do/do not recommend? I see that many of the clinical trials have a contact listed at the Scottsdale location. We could get a direct flight to Phoenix, but not to Rochester.
We can also get a direct flight to UCLA if anyone has good recommendations there. I left a message for the Dumont Liver Cancer Center on 12/22 and no one has returned my call yet.
spokanemom……today’s news is significantly better and I am happy for that. Obtaining a second opinion from a center treating a high volume of our cancer is excellent. You can’t go wrong with either Mayo or MD Anderson. UCSF (San Francisco) has a great hepatobiliary department as well. Might be easier to travel to.
Hugs,
MarionDear Spokane Mom, Bravo for your Doctor to tell you to get an opinion elsewhere! MDA in Houston is tops as well as Mayo in Rochester, MN. Either place is quite experienced with CC. The most important thing is the experience. I am glad your husband is feeling better and wish you all the very best.
He actually did not have vomiting until they tried to transition him to oral pain pills, which is why the doc believed it was probably the pain medicine causing it. They switched him to a pain patch, and a different pain med (dilaudid) as a booster whenever he wants.
The scope today showed no blockage (good news)! My husband feels so much better after they drained about 3/4 of a liter of fluid from his right lung. No big fevers today and he is feeling much perkier. They changed antibiotics yesterday based on the analysis of the abscess fluid and hopefully that helped too.
The liver board here recommended chemo first, then radiation followed by more chemo. Chemo first (gemzar and cisplatin) to try and shrink the size of the radiation field. They also recommended that if we want a second opinion, we get it from somewhere other than Seattle, since they worked closely with doctors there on Patrick’s case already (Dr. Coveler). They recommended the Mayo clinic or MD Anderson if we want a second opinion. Someone recommended Dr. Robert Wolff at MD Anderson. Thoughts??
spokanemom…abscesses can happen. Given the fact that the operation occurred 13 days ago, I am wondering why it took so long for them to suspect a blockage? He is not able to hold down food, which is given fairly early post surgery. Consistent nausea and vomiting should have been some indication that something is going on.
Following tomorrow’s scope make sure to have a frank talk with the physician. You deserve an explanation.Hugs
MarionHe does have unexpected setbacks. Today they discovered an abscess in his abdomen. They drained it, and installed a new drain. That caused him a lot of pain, especially when taking deep breaths. He does have some fluid in the bottom of his right lung. About 3 hours later, he spiked a big fever over 104 and needed ice packs. They suspect he has a blockage at the new connection at the bottom of his stomach and he is scheduled for a scope tomorrow to figure that out. They think that is causing his nausea and vomiting (if he attempts to eat anything).
spokanemom…I would await the outcome of the tumor board meeting and agree, why contact Dr. Coveler when already he is involved?
Your husband’s hospital stay is not out of the norm. These type of surgeries are complex and require a great amount of healing. Does he have any unexpected setbacks?
Hugs,
MarionMy 42 year old husband had surgery to remove an extrahapatic bile duct tumor on the 1st and unfortunately they could not get a clear margin in his liver after removing about 65% of it so they did not do the Whipple. He doesn’t have any other tumors, just cancer cells in the duct by the pancreas and the duct inside his liver. One lymph node tested positive. He has been diagnosed with stage 3B Perihilar Cholangiocarcinoma.
The oncologist here in Spokane, Dr. Peter Schlegel, spoke with Dr. Andrew Coveler in Seattle. Dr. Coveler is with UW Medical School, Fred Hutchinson, and Seattle Cancer Care Alliance. Dr. Coveler recommended radiation in addition to Gemzar and Cisplatin. The liver board here meets tomorrow to determine the best order of treatment.
I know it is best to get a second opinion, but is it beneficial to see Dr. Coveler for that second opinion if the folks here already spoke to him? He is the director of the Pancreatic Cancer Specialty Clinic for SCCA. Should we ask for a different doctor at Seattle Cancer Care Alliance? Should we go somewhere else?
My husband’s surgery was 16 hours long and he is still in the hospital 12 days later.
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