Introduction: 41-yr-old Stage IV Extrahepatic CC
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- This topic has 19 replies, 9 voices, and was last updated 12 years, 9 months ago by gavin.
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March 25, 2012 at 6:34 pm #58531gavinModerator
Hi Sweetgreen,
This is great news, thanks for sharing it here with us all! Hoping that the good news continues for your husband and please let us know how he gets on with his further rounds of chemo.
Best wishes to you and your husband,
Gavin
March 25, 2012 at 3:52 pm #58530pcl1029MemberHi,
With the mets to the abdomen which you did not mentioned in the first message; systemic chemotherapy will be the best option.Both the surgery and the radiation can be rule out at this point.
If you want to try other unconventional therapies;please go to the experience forum title.” Complementary and Alternative treatment—CAM” to get some ideas before start going to that direction.
There are two different ways the Bile duct malignant neoplasms can grow (especially for the one that grows in the hepatic ducts and the common bile duct).
They can grow OUT or grow IN and AROUND the bile ducts and therefore it is much easier to appear on the CT scan as a tumor-like structure (foci or center);however the bile duct neoplasm can also grow ALONG the bile duct on one or both sides of the bile duct and therefore it will appear as stricture (thickness or narrowing along the side of the bile ducts compare to the healthy part of the bile ducts). That is why experienced GI specialist and radiologist can make their diagnosis along with the CA19-9 and other lab results;CA19-9>129 is indicative of cholangiocarcinoma in terms of relatively accuracy.
Of courseMRCP and tissue biopsy are the best tools to confirm the diagnosis too
BTW,i am just a patient and not a doctor .God bless.
March 25, 2012 at 3:50 am #58529lainySpectatorThat is great news, I am wishing for everything to continue along this much better path! We salute turn arounds!
March 25, 2012 at 3:32 am #58528sweetgreenMemberI just posted in the whats working section, and i am happy to report that the first round of chemo appears to be working! My husband has been up and about acting completelynnormal. Well, sleeps later than when he was working but is fine the rest of the day. No pain, eating normal, doing yard work. We are enjoying this fantastic time. What a turnaround.
March 7, 2012 at 9:07 pm #58513marionsModeratorSweetgreen…with this disease, chemo-related nausea is good news. Fingers are crossed. Your husband may just respond more favorably to the next proposed chem combination.
Please, keep us posted.
Good luck
MarionMarch 7, 2012 at 9:04 pm #58515sweetgreenMemberLiz and Peony, it sounds like we are on similar journeys. We also have young children, and life just isn’t normal anymore–although my husband does put on a GREAT act on days when he’s feeling perky and at dinner time with the kids. I wish he had gone to the doctor the moment he had started feeling pain, rather than waiting a month. Maybe we could have caught it in time such that surgery would have been an option.
Thank you everyone for all your support and encouragement.
BridgetMarch 7, 2012 at 8:53 pm #58514sweetgreenMemberHi Marion, the nausea only came after the cisplatin. After the gemzar, he wasn’t nauseous at all. I will look into a radiation oncologist. That hasn’t been recommended to us at all. –Bridget
marions wrote:Sweetgreen…I doubt for surgery to be advised. The nausea, does it increase after chemo treatments or, is it steady throughout? I would also make an appointment with a radiation oncologist. Hopefully it would be someone more than familiar with this disease.
And, make sure that the experts communicate with each other.
Hugs,
MarionMarch 7, 2012 at 12:28 pm #58527hamptonsarasotaMemberHi Sweetgreen. I’m 40 (for another month and a half anyway) and had CC in the bile duct where it branches just inside the liver, no mets, and had a resection with reconstruction of the bile duct with my small intestine. I’m undergoing adjuvant chemo now with Gem/Cis for about 3 more months and will probably do radiation/chemo after that. I had clean margins and clean pathology so I’m lucky in that regard. I wasn’t officially diagnosed until after the surgery and the pathology came back so I didn’t find this site until I came home after surgery. Officially it was considered Stage II also. Hopefully the chemo he is undergoing will kill off what is there and get him to a point where he is eligible for a resection. Wishing you the best…
March 7, 2012 at 2:31 am #58526lainySpectatorsweetgreen, for Cyber Knife to be performed the mass just be under 7cm. I am not sure though how much Metasis they will accept. You will have to ask the ONC. Teddy only had the one mass when they did the cyber knife.
March 7, 2012 at 12:32 am #58525peonyMemberHi Sweetgreen,
Welcome to the site. Sorry to hear about your husband. I think you’ll find that there are alot of us on the sight that are “younger”. My husband was 47 when first diagnoned in October of 2010. He is stage 4 intrahaptic with mets to the bones. Not eligible for surgery. He was on several different chemos but has recently decided he wants quality of life over quantity. He stopped chemo in January.
We are doing our best to enjoy each other and our life.
Good luck.
Peony
March 6, 2012 at 11:45 pm #58524cmSpectatorHi SweetGreen-
You will find a wealth of experience on this website- post often and never hesitate to ask questions.
All my very best to you both,
ChrissyMarch 6, 2012 at 9:31 pm #58523marionsModeratorSweetgreen…I doubt for surgery to be advised. The nausea, does it increase after chemo treatments or, is it steady throughout? I would also make an appointment with a radiation oncologist. Hopefully it would be someone more than familiar with this disease.
And, make sure that the experts communicate with each other.
Hugs,
MarionMarch 6, 2012 at 7:58 pm #58522sweetgreenMemberRadiation, cyberknife and surgery even if he has mets in his abdomen?
March 6, 2012 at 5:22 pm #58521lainySpectatorHello Sweetgreen. My husbands CC was in much the same place as your husband’s. Teddy’s was contained in the bile duct valve where the pancreas connects to the ducts. He had a successful Whipple with clean margins and 4 ONC/RADmen all said no to chemo or radiation. After 3 years the CC returned where the duodenum used to be and they zapped it with Cyber Knife (miracle lazer, I call it). I wholeheartedly agree that a 2nd opinion is in order before starting treatment. Would the palliative chemo worked after surgery? We will never know as we ususally don’t but I can look back and regret nothing we did. Trust your gut, it works for you! Please keep us posted.
March 6, 2012 at 5:16 pm #58520pcl1029MemberHi,
Gemzar+ carboplatin ,yes will have the least side effects among the three platium drugs(cisplatin,oxaliplatin carboplatin).Since the cancer is in the distal bile duct, radiation consult for 2nd opinion is a good idea to explore the opportunity of cyberknife,PDT,IBRT or even SBRT.
Good luck and
God bless. -
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