hopeless
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trying to answer some of the question here.he keeps saying he’s feeling ok,but he sleeps all day long,has no energy, and doesn’t do anything.is loosing his balnce but is keeping his weight even though he doesn’t want to eat.is coughing quite a lot,and i was told by the dr that i work with that if his ascites and pleural efusion was very very bad they wouldn’t send him home without any at least diuretics or maybe do some drainege…he had his surgery at massachussets general hospital w/Dr.Sarah Thayer…she is an angel…i wish all drs. were like her…and now his onc is Dr.David ryan…very good professional but very pessimistic….i feel bad or him…he will start 5FU with a booster,but he was on Gemox for 4 months.it didn’t work.so the dr. doesn’t think it’s worth to use oxaliplatin again…so it won’t be FOLFOX…i’ll just keep praying and hope for the best…
thanks all of you…i’ll keep you on my prayers…Have you looked into theraspheres or sir spheres or radio frequency something? Some people here have had really good results with these.
Kris
Lilly, I’m so sorry to hear this!
Pauline, I have been a complete nag trying to get my dad’s tests and consultations more quickly. I’m feeling now that his life depends on it.
A question about Lilly’s dad: why is there coughing? My dad is doing this quite a bit, and we were blaming it on the procedure to install the second stent. Also what is the role or significance of the ascites in terms of disease activity?
There are certainly a lot more things to try. Don’t give up hope. Since you didn’t say how your dad is feeling it’s hard to offer suggestions. I can tell you that my dad was dx 11/07 and was not a candidate for surgery. He’s done 5-fu & radiation and gemzar. He’s recently started Tarceva and oxyplatin. Prior to this last protocal he was sent home to die. He was in the hospital and the CT scan showed that the cancer was very aggressive and had met to lungs. We moved my parents closer to family and founda new oncologist. My dad was feeling very bad…couldn’t walk, could barely talk because he would get out of breath and his stomach was very distended. He was also very depressed and did nothing all day but sleep or lay there with his eyes closed. He just had a CT scan after undergoing this new protocol and the cancer had not spread any more. He looks 100% better than when they sent him home to die. He’s not feeling well but he’s so much better. He can walk a little and occasionally watches TV and can carry on a conversation. He’s even gone out to eat.
The current oncologist has been very frank with us. He says the odds are against us but continuing treatment is not going to make him feel any worse than he already feels. The hope is that it will shrink the cancer and stop it from spreading.
So don’t give up hope. My prayers are with you and your family. You came to the right place to get support and advice.
Your dad is young and has that on his side. My expertise is very limited but others who have more and could offer advice might want to know, where is he currently being treated? Where was his surgery performed?
I am not sure if your father would be a candidate but I regret we did not try photodynamic therapy (PDT) for my Mom, there is an article in the Medical Updates section, here is the outside link:
http://www.eurekalert.org/pub_releases/2008-04/uovh-clc041508.php
Here are some older posts on it:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=559
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=14
Patty
I would suggest that you waste no time in getting your dad started on some treatment and that you also should get a second opinion. I have regrets about the delays in my husband’s treatment and once we got the diagnonis of mets to the omentum and peritoneum he died within a month. However, the ct scan results had been delayed and we took 5 weeks to get them. Who knows what a difference it might have made if we had got the results straight away and if they had started Anthony on some chemo. I wouldn’t want this to happen to your dad or anyone else. I wish you and your dad all the very best.
Paulinehi everyone…we got the results of my dad’s ct…it’s bad…besides his liver mets,now he has ascites,and the disease is progressing to his stomach area and lungs…he’s been sleeping and coughing a lot…also losing his apetite…he was on gemzar/oxaliplatin but the dr. stopped.no longer working…he’ll start my dad on 5fu with i think leucovarin…does anybody know anything about this….do we have a chance?his onc. is hopeless…but i believe in a god of miracles…my dad is only 50.dx 12/07,wipple 01/07 and now this…i’m scared…
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