October 14, 2009 at 5:08 am #32052marionsModerator
There are quite a few postings regarding Avemar in the upper right hand side of page “google custom Search”.
MarionOctober 14, 2009 at 3:03 am #32051devoncatParticipant
I am thinking of trying Avemar also. I *think* it is the only alternative suppiment that has clincial and scientific research to back it up.
KrisOctober 14, 2009 at 12:12 am #32050lainyParticipant
Thanks for the information, Kathleen. It sounds like your mom is with the right doctor but more than that how lucky she is to have such a loving daughter to journey with her on this rocky road. You have certainly had a full plate. It seems like your mom is doing quite well and lets hope she keeps on the path.
Stay positive but when things are over whelming or you feel stressed here is a little exercise I do. I get in the car, whip up the volumn on Mama Mia and sing like there is no tomorrow. Works wonders.October 13, 2009 at 11:52 pm #32049lovemymomParticipant
Thank you all so much! I have been so lost these past four weeks; finding this board and your incredibly kind encouragement quite literally made me cry. To answer some of your questions, my mom is 73. She has significant lymph node involvement, which is why the docs precluded resection and radiation. She was initially diagnosed with squamus anal cell cancer following a colonoscopy. CT and PET scans revealed extensive metastasis into the lymph nodes; the docs didn’t think a small squamus cell carcinoma (smaller than a pea) could be responsible for such extensive lymph node involvement. A biopsy of a lymph node in the neck lead them to conclude it was gallbladder cancer. My mom had significant abdominal pain prior to chemo and was put on a 72 hr patch, which has helped significantly. She is trying to stay active and is eating very well. No weight loss, or nausea; she restarted regular bowel movements (thanks to lactolose syrup and a stool softener rx by doc). She takes increased amounts of vit. d and curcumin. I also got her avemar, but have not yet cleared it with the doc. My BIL was dx with stage iv pancreatic cancer in Nov.’08, and I learned about curcumin and avemar from him. We will talk to the doc about milk thistle tomorrow. Treatment is at Roswell Park Cancer Institute in Buffalo, NY. Thanks again for your support. God Bless you and yours! KathleenOctober 13, 2009 at 9:07 pm #32048katieloumattMember
I’m sorry that you have had to find us but evreyone on here is so friendly and knowledgeable. You will soon feel at home… There is alway someone around to answer your questions or just to offer support.
My Dad had a klatskin tumour with no symptoms and in late June had an unsuccesful liver resection, sadly he died 9 days later. I only found this board after he had passed away and wished I had found it earlier.
Wishing you and your Mum strength as you make this journey,
KatieOctober 13, 2009 at 7:57 pm #32047louiseParticipant
My diagnosis was clearly cholangiocarcinoma, but it was extrahepatic. The prognosis was bleak, but I’m still here after almost 2 1/2 years. I had the Gem/cis cocktail (2 weeks on, one week off) as first battle, and it reduced the tumor to the point that it did not show up in the scan. The cancer seemed inactive for a time, but returned as metastasis. Another series of the same coctail again did its job. If you use the search function and put my name in the author box (no subject needed), you can read my previous posts to know more of my story, or contact me via e-mail if you prefer. You didn’t say how old your Mom is, but I was not warned that this combination of chemos tends to thrust pre-menopausal women into menopause, and it did me. As you go through this maze of experiences, you might feel that you are earning a focused MD. In some cases, I believe the people on this board know more about cc than the Doctors some of us deal with. If possible, you might want to find out how many cc cases her doctor has dealt with. Also, second or third opinions are very appropriate. As much as she is willing, your mom should be encouraged to learn about her case and make her own decisions. As the daughter, your job is to support whatever decisions she makes, and if she does not want to make the decisions, be prepared to do so.
Best wishes and visit often! Keep us posted on her care, your questions or frustrations, anything you want to ask is open to discuss. And if you don’t want to ask, you just want to know, use the search forum. We’ve had people admit to lurking around the site for some time before logging on to do their first post. That is okay, too. You are not forced to divulge any info you do not wish to.
May I also say, welcome to this board!
LouiseOctober 13, 2009 at 6:35 pm #32046marionsModerator
Kathleen….The latest studies regarding the Gem/Cis combination has shown to be more effective in intrahepatic cancers therefore, your Mom may very well respond positively to her treatments. As mentioned by Sara and Lainy, you will receive plenty of support from this great community. I can’t think of much not being discussed on this board pertaining to treatment options, and anything and everything evolving around the world of Cholangiocarcinoma. Welcome.
I am sending my best wishes your way,
MarionOctober 13, 2009 at 6:22 pm #32045lalupesParticipant
Welcome, Kathleen!! I’m sorry I can’t answer your question but I wanted to send my best wishes to you & your mum.
Please keep coming back with any questions & I’m sure someone on this wonderful board will be able to shed some light on them. Please let us know how you & your mum get on, too.
I’m the sister of a cc patient & I know how much of a shock the diagnosis is for the family, too. You’re in my thoughts.
JuliaOctober 13, 2009 at 5:44 pm #32044lainyParticipant
Hi Kathleen and welcome to the best little club in the world that no one wishes to have to join. My husband is a 4 year survivor of a Whipple surgery, CC was located in his bile duct valve right next to the pancreas. When they did the Whipple they also removed his gall bladder. To become a great advocate for your mom please read up on some of our past posts. Go to the search button and just type in gall bladder and I bet information will come up for your situation. After you familiarize yourself with CC you will find it easier to make a list of questions for the doctor. To be fore warned is to be fore armed. Did the doctor say why the gall bladder could not be removed? There is nothing wrong with getting a second opinion, it is done many times with a CC diagnosis. My best to your mom and please keep us posted. You have not come to the wrong place you found the right place and we are happy you found us.October 13, 2009 at 5:31 pm #32043saraMember
Hi, Kathleen! I’m so sad that you have a reason to seek us out, but glad that you found us. We don’t have any active doctors on these boards, so it’s best to consult your treating physician regarding medical advice. However, so many in the community have been through the treatments previously, and are extremely generous with sharing their experiences.
The National Cancer Institute (NCI) seems to have taken the position that biliary cancers are interrelated. They currently break apart cholangiocarcinoma into two major groups: intrahepatic (the portion of the bile ducts inside the liver), and extrahepatic (the portion of the bile ducts outside the liver). It appears that those with intrahepatic cholangiocarcinoma get grouped together with liver cancer, and those with extrahepatic cholangiocarcinoma get grouped together with gallbladder cancer. At least according to the NCI, gallbladder and some forms of cholangiocarcinoma are similar, so there is no doubt in my mind that you came to the right place!
That being said, the NCI oversimplifies the issue…it appears that some bile duct cancers behave similarly to liver cancer, some behave similarly to gall bladder cancer, and some behave similarly to pancreatic cancer. If they were to sink some money into really classifying all the pancreato-hepato-biliary cancers, I bet we would see an even greater differentiation.October 13, 2009 at 4:51 pm #2770lovemymomParticipant
Hi Everyone. I may be at the wrong place so please let me know if I am…My mom was diagnosed in late 9/09. Initially, the oncologist said Stage IV gallbladder cancer, then mentioned cholangiocarcinoma. I tried to clarify and he said, “we don’t really know which one it is, but we know it’s in the gallbladder.” He went on to say they’re all grouped as biliary tree cancers. My mom is currently being treated with gemcitabine and cisplatin (2 wks on/1 wk off) with no option for radiation or surgery. Like so many others, she was so active up until the month leading to her dx — golfing, walking, out constantly — and we are just so devastated. I may be trying to squeeze into the cc dx because the statistics are slightly better or because there is so much more information here than on Gallbladder msg boards, but has anyone had similar experiences? I simply want to get the most and best information to help my mom in any way I can. Thanks and God Bless! Kathleen
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