mcf
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Lainy, No we haven’t gone to back to Mayo yet. Our Oncologist here talked to our oncologist at Mayo and suggested we see the radiologist here to see if they can do a stent or drain. We still plan on going…..but our oncologist there said he has no new options on the chemo treatments……..(according to our oncologist here) I was ready to pack up and go and I still am…..It is a tough trip on Sheila…..to travel the thousand miles – but we sure will if we don’t get any relief from the jaundice this week. Thanks, Bob
Marion, please let me know what I need to do to get the supporting documentation for obtaining the Nexavar treatment. I have been surging the web to find some but haven’t found much…..It would help so much and just at the right time as I am getting ready to file the appeal. Thanks, Bob
Thanks again for the help. I am going to go to Mayo asap. I am trying to decide whether to wait for an appointment or just go to the emergencey room. Any advise on that? Sometimes it takes a few weeks to get in if you wait …… so I might just pack up and jump in the car. Yes, our oncologist has never treated CC before, but he has been conferencing with an oncologist from Mayo so we thought we were getting help from there also.Thanks again……This website is a godsend with all the help it offers to all. Bob
Thanks for the help. Sheila is being treated here in Bismarck, ND. At the beginning of this journey we went to Mayo, then back here for chemo for approx 6 months, then had liver resection at Mayo then CC came back after 3 months. Since then have been trying chemo until the last 3 months or so. That is when she started getting the edema and ascites. She has been doing Spirolacton (sp) and Fuerosimide (sp) dieuretics for 3 months. Now have the swelling under control but now the liver functions are up and she has the jaundice. The doctor here says that the cat scan doesn’t show a blockage and that he thinks there are too many tmors to put in stents or even possbly an external drain? I don’t understand why an external drain might not work. Will be seeing him next week and also try to see if going back to Mayo would help. Thanks, Bob
Thanks to everyone for the responses to my post. I cannot even begin to say how much help this website has been over the last few years. Our oncologist actually talks to Mayo every once in a while for direction treating CC. But perhaps it is time for a return trip. I am certainly open to anything that will help Sheila in this fight. Today she had an ammonia blood test to see if that was the cause for the mental confusion she has been having the last two weeks. Really slow and very confused, really scares me when she has to drive Hopefully, we can get a few answers about that. Again, thanks for all the help. Bob
thank you so much for yours reply. This is Sheila’s first round with the taxotere. She did stop the gem/cis mainly because of the side effects but that was after almost a year of it…….she had great results in the beginning then had a resection then cc came back 3 months later – back on the gem/cis for a few more rounds until she just couldn’t do it any longer. Then she tried the gem/xeloda with no success, now doing the taxotere three weeks on one off. I think you information about the pulmonary peripheral edema may be what is happening to her……..and it might be at least partially our fault. Sheila complained about the steroids so the oncologist only administers them during her chemo….no folowup. I’ll talk to him immediately about that possibility. Thanks again for the information!!!
could you please tell me if you had any trouble getting the insurance company to cover the everolimus or the sorafenib for cholangio?
Thank you all for the welcome and the advise. WE have been in touch with the radiologist and he has agreed to do a peer to peer with the insurance company regarding the microsphere treatment. Hopefully, we will be able to win the fight for a future treatment with the spheres. It seems like some of the blogs we have been reading have been repoerting some success with this treatment. We will certainly share the news as we continue to fight the fight. As for now we have our fingers crossed that the cis/gemzar chemo will again have some help in controlling CC. Should have a CT scan after the second round.
