May 30, 2010 at 4:05 am #37914
Bob: thank you. I’d read your initial post on your miracle survivorship and it was very inspiring. I wish you continued success too in your journey. DaleMay 26, 2010 at 1:46 am #3791332coupeParticipant
As others have said, it was very encouraging to read of your long term survivorship. Exceptional indeed. I too have been cancer free long term (thirteen years) but not without a bump in the road or two. I wish I had been aware of this site and the symposium in particular which was apparently attended by some of you. Perhaps someday I will have the good fortune to meet some of you good folks. May God continue to bless you and use you.
bobMay 25, 2010 at 4:44 pm #37912lsismanParticipant
It is funny reading all the comments back to me. Ofcourse I’m educated in this, and we have an oncologist who will answer his cell phone EVERY time, even when he is out jogging. We can call and ask about every little thing that doesn’t seem right. Still no alarms that we are “in trouble” but a 230 lbs guy down to 155 is really upsetting to see. He drives, does quite a few things, barfs whenever , mostly after meals due to pain pills, yes he takes enzymes and a bunch of other things to help with issues, Everything you suggest I know, do, ask or on top of and so is he. He must have up to 6 Ensure a day (it is like Boost) and he doesn’t barf but still shrinking. Calories are going in but no weight maintained. To be honest I think he is winning on this sight for most weight lost. Please be assured that Every thing related to BM is regular and we are headed to Destin Friday for a week with the kids. I NEED IT !!! But he’ll drive.May 21, 2010 at 5:28 pm #37911marionsModerator
IsismanMay 21, 2010 at 5:01 pm #37910lainyParticipant
Dear Isisman, we are so sorry to hear your husband is still having such a hard time. Teddy did have some “things” happen after his Whipple but not nausea. I would talk to the ONC about it. It is a long recovery as the surgery itself is the BIGGEST surgery to the human body. Not life threatening but huge. Teddy had his Whipple almost 5 years ago and he is now 77. After 3 months he would walk just to the end of the drive way and then every few days increase that. At about 5 months he started just putting with golf balls. He also had a major weight loss but honestly he needed it. As usual the weight has returned! As for food I started out very simply and he did best with “comfort foods”. His taste for things kept changing. I gave him Boost daily and what ever he wanted to eat at the time was fine with me. Instead of big meals I did small snacks very often. I honestly think it best to let the ONC know just how you feel your husband is doing…you are the best judge of that. Hope things start to turn around very soon.
P.S. He had no node involvement at all, all clear margins and it returned 2 years ago where the duodenum used to be. We zapped it with Cyber Knife and now it is back again near the right kidney and we will find out Next Friday how we are proceeding. We feel very lucky that so far we have been able to keep it at bay, fairly easily.May 21, 2010 at 4:08 pm #37909lsismanParticipant
Gosh, I still feel that if the nodes are affected the risks for this ugly CC to return are higher. It seems like all the survival success stories lie mostley with those that didn’t have nodes affected. We can only hope. My husband WAS 230 adn 6’1″. He had all tests come back looking good after chemo and radiation but he continues to lose lbs. He is 155 now. I think he can wear my pants!!! I’m ill over it and he doesn’t look good physically, he eats as best he can and takes suppliments, still barfs here and there, maybe do to some meds upsetting him…still in pain after whipple, 5 months later and stomach doesn’t hold much . This is such a long road of recovery and it is upsetting that there is just no reason for such continued weight lossMay 21, 2010 at 2:33 am #37908
Linda Z: IMay 18, 2010 at 12:51 am #37907linda-zParticipant
Thanks again for being here and sharing your experience. I was diagnosed with intrahepatic cholangiocarcinoma in March 2009. Subsequently I have surgery removing 40% of my liver on April 1st and the surgeon burned another area where he saw a tumor. However, I did have one lymph node that showed cancer. It was followed up with Gem/Sys chemo combination and follow-up CT scans. The second set of scans showed cancer returned and possibly mets to my lungs, but they were unsure. I am now on Oxalyplatin and Xeloda pills and will be starting my 4th treatment Wednesday. The plan is to do another set of scans after this treatment to see if my lungs are clear and see if this round of chemo shrunk the tumor, then possibly surgery again.
I did not have radiation therapy following surgery. My surgeon and onc. were SO sure that they had clear margins around everything, that they said the chemo was actually for precautionary measures due to the lymph node that showed cancer. I would HIGHLY recommend chemo and radiation therapy in surgery cases due to the aggressive nature of this cancer.
I’m very glad to hear of your story and your 6 years’ survival. Here’s wishing all of us dealing with this cancer have success too.
Thanks for your story. Also a side note, my sister-in–law had a rare cancer and travelled from Chicago to MD Anderson in Houston too. She has been 5 years cancer-free. She loved MD Anderson, and thought they were tremendous to her while she was there and her follow-ups later.
Linda Z.May 15, 2010 at 4:20 am #37906mlepp0416Participant
Welcome to the site! Wow, 6 years! I only wish that after my husband Tom’s left resection of his liver that the VA had given him Chemo. Then maybe we’d be looking at 6 years! Knowing what I know now, I highly advise that after a resection one SHOULD have Chemo!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret (My Husband and Cholangiocarcinoma)May 15, 2010 at 2:23 am #37905
Thanks all. Just a follow-up on my cancer journey. As mentioned I’m a 6-year survivor. In May 2004 I was diagnosed with Stage 2 intrahepatic cholangiocarcinoma. I had a liver resection, about 3/4ths of my liver was removed. I had follow-up adjuvant treatment of chemo (pill form – Xeloda) and radiation for 6 weeks. In 6-9 months my liverMay 13, 2010 at 3:59 pm #37904lalupesParticipant
Welcome, dmeek – it’s great to meet you!!!
JuliaMay 12, 2010 at 1:22 pm #37903lulu07Participant
Hi Derek Welcome to probably the most awesome website filled with wonderful people and tons of information. I am 4 months status post right lobectomy for intrahepatic cc. I had my first CT on April 30th and no tumor recurrence thank the lord at this time. I’m having 6 months adjuvant chemo at Bruckner Oncology in NYC can’t sing their praises or my sugeons Dr. Myron Schwartz from Mt Sinai enough. I was wondering where your surgery was performed and was it also a lobectomy or just liver resection, of course after the lobectomy I did have resection also. You have made my day 6 years cancer free is wonderful and I hope you have many, many more. I was especially interested in your case because as I’m sure you are aware the intrahepatic cc is the rarest of all. My thoughts and prayers will be with you- Thanks for posting NancyMay 12, 2010 at 2:12 am #37902linda-zParticipant
Hi dmeek and my sincere welcome too to this Board.
It has indeed brought a smile to my face to hear of your 6 year survival with intrahepatic cholangiocarcinoma. I also have intrahapatic CC with surgery a little over 13 months ago, with returning tumors. I look forward to hearing of your journey and having your much welcomed insight into this fight.
Linda Z.May 11, 2010 at 7:56 pm #37901katieloumattMember
Just wanted to join the others in welcoming you to the board.I’m sure you will have lots to offer.
KatieMay 11, 2010 at 12:44 am #37900barbara6193Participant
This is Barbara and it was great to meet you at the symposium. Both you and Sue warmed my heart.
Love from NH,
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