eileensrn
Forum Replies Created
-
Posts
-
I especially like that cc was linked to the parasite. My husband was in Southeast Asia in the late 60’s and now is approaching his first year since diagnosis. There is gathering evidence that many US Veterans have contracted this hateful type of cancer.
EileenBetsy,
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.
EileenSara,
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!
EileenThanks, 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!
EileenWell, 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.
EileenMarions,
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!Thanks, Jim,
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.My hubby is 63. It is intrahepatic cc Labs are : AFP 49, AP211, Bili 1.2, AST 96 and ALT 110.
Ca19-9 – 154. he hasn’t been staged yet, but with the amount of metastasis present, I’m not optimistic. So far only the R lobe of liver has lesions (besides the metastatic areas). If we can keep the rest of the liver clear and destroy the other stuff, they say they’ll do a R liver resection. It sounds strange to be more concerned about the metastasis than the primary. There is a center very close to me that’s offering TrueBeam STx. Any input on that procedure?
