New diagnosis of CC with mets to lung
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Judip – I am so saddened to hear about your brother. I understand how your mother is feeling right now. Parents should never outlive children….it’s just not the natural order of things. Please know your entire family has my deepest sympathy. – Nancy
Dear Judip,
I am very sorry indeed to hear of your brothers passing, please accept my sincerest condolences. My thoughts today are with you and your family.
Gavin
Dear Judip, I am so very sorry to hear of your Brother’s passing. Please accept my sincere sympathies and Bless your family.
Judip,
I am so sorry to hear that your brother has lost his battle with CC. My thoughts are with you and your family at this sad time.
Darla
Judip
I am sorry to hear that your brother has passed on from this terrible disease and my thoughts are with you and your Mom at this time.Take care of yourselves.
Gerry
My brother lost his brave fight with CC on Monday. We are all devastated and I hope for the strength to especially help my mother who is distraught beyond belief.
Thank you both Marion and Julia. I want to hear about the successes! I’m glad Julia that your sister is coping better on the gem cis.
My brother is scheduled (local oncologist) for gem-oxaliplatin…I’m wondering why not cisplatin because when I asked him last week about that combination he said he was going to order just gem?! hmm! I’ll have to ask the oncologist at Dana Farber.
Hello, Judip. My sister’s cc is inoperable, too & she’s just finished her 2nd cycle of Gem/Cis. She had a rough time last week but this week she’s coping really well on it again.
My very best wishes are winging their way to you & your brother.
Julia
Dear Judy….I wanted to welcome you to our board but, also I wanted to share something with you on a more personal level. Your concerns regarding the interpretation of the Gem/Cis abstract are well understood. In fact, you remind me much of my oldest son who, similar to you has a PhD in Science (Epidemiology.) Similar to you, my son searched all available scientific and medical data pertaining to this cancer all the while taking in account the realistic interpretation of available statistics. What I am trying to convey to you is that although, the positive outlook for a CC patient with metastases appears to be quite defeating we have seen on this board, many patients outliving the predictions of the current statistics by far and this includes especially, those patients with pulmonary invasion. And that is something I wish for your brother also. And, realizing the sibling he has advocating for his well being and treatment protocols I know that the absolute best solution to combating this cancer will be found.
Good luck on your next visit with Dana Farber
Tons of good wishes coming your way,
MarionHello all! Thank you for your posts and words of encouragement. We are going to Dana Farber to meet with a medical oncologist on Wednesday. She will be the 2nd opinion after we went to Memorial Sloan Kettering and got the official diagnosis. I’m not counting the local medical oncologist who saw him and is prescribing Gem treatment alone to start next Monday.
I have seen the UK abstract presented at ASCO this past May showing that, in their study, gem-cis combination patients had a longer overall survival time than gem alone, albeit not much (3 months) but I’ll take all I can get.
Sometimes I think it is unfortunate that I am a PhD scientist because I understand the study results and I’m trying to interpret them as optimistically as I can to my brother. I don’t want him to give up and try to give him as much hope as possible but he gets so depressed when he does not hear positive news.
Judip,
Here’s a link to the study that Kris mentions –
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=2773
Gavin
Hi Judip,
Welcome to the second family you didnt know you had. There was a recent study that showed gemzar plus cisplatin worked better than gemzar alone. You can find the info on this site somewhere or you can go to pubmed and search cholangiocarcinoma, gemzar and cisplatin. Take the abstract to the doctor with you and make it the focal point of the discussion.I had to wait a couple of weeks before treatment started. Sometimes things dont go as fast as I would like so I understand. I personally dont think waiting 2 weeks for an appointment to start chemo is too long since I doubt they are holding anything back, more likely things are just jammed packed right now with the holidays coming and people having scheduled appointments before they travel off to visit their families.
The sad truth is that your brothers cancer is not operable. Once it has metastisied, it rarely is. I would still get a second opinion about other treatment options since each doctor has a different approach. I might also talk to the doctor about different trials going on.
Best of luck.
Kris
Hi Judip,
Welcome to the site, although I am sorry that you have to be here. My dad’s CC was diagnosed last year and was deemed inoperable due to the location of the tumour, was too close a major artery. Radiation treatment was also ruled out from the start and his treatment was Photodynamic Therapy, PDT, with the possibility of chemo to come later. As it turned out, a year on he was not able to have chemo either due to his jaundice.
I agree with Lainy about the 2nd opinion for your brother if you can. I hope you will stick around here as you will get a load of support and information from poeple who have been and are in your situation.
My best wishes to you and your brother.
Gavin
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