July 12, 2011 at 8:16 pm #51476
I just had another thought for second opinion – University Hospital in Cleveland. They just opened a state of the art cancer center – I haven’t seen it yet but I’ve read the reviews. I was really impressed to read that during cancer surgeries, they can take the patient for an MRI right next to the surgical suite without having to wake the patient. They get immediate results and see whether they removed the entire tumor or not.
BetsyJuly 12, 2011 at 3:57 pm #51475
Sorry for calling you Sara! Eileen, I got a second opinion from the Mayo Clinic but it was for a chronic bile duct issue that goes back to resection – not for cancer. However, I was able to send the records and talk to the doctor on the phone. I think bigger hopsitals are giving second opinions that way now. I think its a good hopsital to start with because they were one of the first hospitals to do liver transplants for CC patients – something the Clinic has never done.
Its so disheartening when a doctor doesnt recognize you. Here you are going through this major crisis and your case and life is all in a days work for the doctor. On the other hand, the doctors are swamped with cases and only allowed small amount of time to meet with patients. Its like a factory. I honestly don’t know how more mistakes are not made. But I did ask around the Clinic about Dr. Pelley and was told you either love him or hate him.
BetsyJuly 12, 2011 at 1:17 pm #51474
Dr. Pelley said it really didn’t matter. He was going to use a cocktail that would work for all three types of primary. All I know is that my hubby wants to GET STARTED. If there isn’t a marked reduction quickly, then I believe he’ll be ready to go after another opinion. I’m pretty sure our insurance will pay for one “second opinion”, so I want to be sure we ask the right place. Mayo? Kettering? Any other suggestions? He at the port put in yesterday, and we bumped into Pelley in the hall. He didn’t remember us, even though it was only 5 days ago.
EileenJuly 11, 2011 at 8:10 pm #51473
I live in the Cleveland area and I’ve been a patient at the Clinic for 3 years. The surgeon who diagnosed me and did my liver resection is Dr. John Fung (love him!). I also met with Dr. Pelley but never had chemo/radiation treatments. I can’t say I care for Dr. Pelley’s “bedside manner” but my doctors respect his opinion and highly recommend him. I’ve been thankful to have the Clinic so close to home. I’ve undergone many procedures there that a smaller hospital could not do.
If Dr. Pelley isn’t sure it is CC, does he want to get more biopsies?
BetsyJuly 11, 2011 at 5:59 pm #51472
We contacted Sloan-Ketering. They are working on 4 to 5 weeks out for second opinions. THey sid to start the chemo, find out when his next scan will be and call they 4 or 5 weeks before the scan date. THe want the new scan at the time they see him. If we miss that window, then we wait for another 4 or 5 weeks! Our nephew showed the PET to an Oncologist he knows and got the same treatment plan. I guess you’ve got a point about someone else looging at the slides. Once we start the treatment, hubby may be more ready to put the effort into getting a second opinion (even though I’d be doing the work). He just wants to get started on killing this stuff!
EileenJuly 11, 2011 at 2:49 pm #51471saraMember
I apologize if I missed this above, but have you sent off the tumor slides to another facility for a second/third opinion? The diagnosis is critical to be sure the “virgin” cancer cells are treated with the best chemo possible on the first pass. I would pick one of the major cancer centers that routinely sees high numbers of cholangiocarcinoma, pancreatic, and lung cancer patients. I’m not sure about lung cancer, but Fox Chase, the Mayo Clinic, Memorial Sloan Kettering, and Johns Hopkins are all hospitals relatively close to you that are highly involved with pancreatic and bile duct cancers. I know that some of the institutions may tell you that they require you come in and see a doctor to get a second opinion, but historically patients have been able to push for a second opinion on diagnosis through just sending the medical records to other cancer centers. I think it may help if your husband’s oncologist makes the request.
All our best to you and your husband.
– SaraJuly 11, 2011 at 1:54 am #51470jim-wildeMember
Eileen, feel completely free to vent here. It won’t bother any of us in the least.July 11, 2011 at 1:11 am #51469
Thanks, guys. Dr. Pelley suggested we get a doctor closer to home, also. There’s an oncologist about 25 minutes from us. But Hubby wants to start with Dr. Pelley. He seems to be a straight shooter. I’m thinking once we see how my husband fares on the ride home, that may change his mind. Otherwise, he may be ready by the time the weather changes. He really likes the idea that there’s no language barrier. Once he’s adjusted to the jargon, he won’t care, but for now…
He really gave me a scare. Last night he has me check the commode to see much darker than normal orangish urine. He does have a kidney stone floating around and I thought he must be getting scratched. I refused to believe he suddenly started to go into liver or kidney failure. He had no other sx…no pain, swelling, nothing! I made him really push the fluids today, and at last check, he’s about back to normal! He played golf Fri and Sat, with not enough replacement. I’m tempted to say “I could kill him!”.
Our daughter came home from Germany yesterday and leaves on Wed. Our son and wife came today and we had a nice, low key, day together. I still expect him to have great success with the chemo, but it was nice for us to be all together before the tough stuff begins.
Thank you, guys. I need someplace to vent so badly. I’m like a roller coaster!
EileenJuly 10, 2011 at 9:15 pm #51468jim-wildeMember
Eileen, Marion has a good suggestion. My adjuvant chemo was directed by an onc 6.5 hours away, but administered by a local onc facility, 15 minute drive. I saw the remote onc at three month intervals, and now six and communicated with her by email with occasional questions. It worked very well.July 10, 2011 at 4:34 am #51467marionsModerator
Eileen….Your husband may very well not experience any vomiting and nausea as preparatory drugs will be given beforehand. I would think that you will be able to drive for 2July 9, 2011 at 3:10 pm #51466
Well, the Oncologist was at least a straight shooter. The only option left is aggressive chemo: Cisplatin/Gemzar once a week for 3 weeks, then a week off. How soon after the treatment does the N&V start? We have a 2.5 hr ride home. Should I be finding a place to stop and relax, or beat feet to make it home before it starts. The real surprise is that Dr. Pelley says he’s not convinced it’s CC. He says the markers could be Pancreas or Lung, even though there’s no evidence in the pancreas and only 2 “very atypical spots” in his lungs. The tiny spot in his leg worries him most. Our nephew was able to have a Hematologist/Oncologist look at hubby’s PET. He concurred that chemo was the only option, so I guess that’s a good second opinion.
Thanks for thinking of us. I think I’ll stick around even though we’re no longer sure it’s CC, you guys have been so nice.
EileenJuly 7, 2011 at 12:22 am #51465
Thanks for the insight, I was beginning to realixe that there were more than one manufacturer of narrow beam, high dose radiation machines. Luckily, he has no varicies, so that should not impact on the treatment plan. I don’t want to hear words like pallative or terminal tomorrow. I want an aggressive, positive approach!July 6, 2011 at 9:59 pm #51464marionsModerator
Eileen….True Beam radiation is not unlike some of the other radiation therapies offered for the treatment of cancer. Hospitals purchase one or the other therefore, you will see different maschines at different centers.
If indeed your husband presents to be with varicies then that again may influence the treatments proposed.
Good luck with your upcoming consultation with Dr. Pelley and please, keep us informed.
All my best wishes,
MarionJuly 6, 2011 at 7:58 pm #51463pcl1029Member
I presume the doctor you will consult tomorrow is an oncologist;
Gemzar/cisplatin ;Gemzar/oxaliplatin gemzar/xeloda is the first-line systemic therapy they may offer to your husband. In your case,you can ask the oncologist whether it is beneficial to add a molecularly targeted agent such as erlotinib,sorafenib or bevacizumab.
When you have lymph nodes involvement, it may due to other disease such as infection but most of time,if they confirmed metastasis they will not do surgery but give chemo first to shrink the tumor and the lymph nodes and then perform surgery later if they can in hoping for a better surgical outcome.
Columbus ,Ohio University Clinics and Hospitals may be another place for you to consider since they also provide clinical trail at this moment for unresectable bile duct cancer using Gemzar/xeloda and bevacizumab and their team is familiar with CC.
God bless.July 6, 2011 at 7:06 pm #51462
We live a little over 2 hours from CC, and only slightly more from PIT, My husband also has Hemochromatosis, which is what I believe caused the cancer. Of course, we only found out when they did the biopsy. He just had an Endo yesterday looking for varicies, and I tried to question if they should do the ERCP, but no dice. We are very lucky, in that we have a nephew who’s a drug rep. He can check with his cronies to see who and where the best currently is. I just hope Dr. Pelley has something to offer us.
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