November 6, 2008 at 11:32 pm #22544
Charles, nice to meet you. My CTscan last week showed a hypo density 3.2cm. It’s right at the incision point where the surgeon replaced part of the IVC. The oncologist feels it’s scar tissue but I have an appt with the lead surgeon of my operation, who is the Director of Transplants at Dartmouth Medical Center. My blood work came back with NO elevations. I came close to getting a transplant last year but the resection was successful. This website has taught me that my operation is VERY rare. Others on this site have had two resections. Keep in touch. GaleNovember 4, 2008 at 5:59 pm #22543charles-woodmanMember
I too had a 6cm tumor in my right lobe, wrapped around the IVC. I was told I was stage IIIB and inoperable. However, I talked my surgeon into recommending me for a liver transplant. He sent me to Mt Sinai Hospital and Dr. Suku Emre who said a resection was doable and preferable to a transplant. The tumor simply had not invaded the IVC so it simply pulled away when Dr. Emre cut it. That was June 2007.
I had an excellent year of health until July 2008 when scans showed the CC had returned in the liver and lymph glands. I am now at Mass General Hospital in Boston getting a chemotherapy regimen of Oxcalliplatin and Gemzar. I am advised that the best hope is a 40% chance of slowing the growth.
Thanks for sharing your stories. It is helpful to know we are not alone.
P.S. Dr. Emre is now the head of the Transplant Unit at Yale University Hospital.November 4, 2008 at 5:14 pm #22542marionsModerator
Hello Swarty….thanks for joining. What type of chemotherapy is being considered for you?November 4, 2008 at 12:49 pm #22541
Swarty!: I never went through chemo, there are other introductions that you’ll find helpful. I just know not to go through it by yourself.November 4, 2008 at 12:47 pm #22540
Lisa: The 16 years I was single after my divorce, I found it hard to date without cancer. I met my second husband via a blind date. We’ve been married 13 years. Got a friend, who knows a friend?November 4, 2008 at 12:32 pm #22539
Thanks so much for responding to my postings. Nikki66, my tumor was 10.3CM (about 5 inches) I was Stage IIIB. I had only one primary (ONE BIG, HONKIN’ TUMOR) Mine was in my right lobe. It was an intrahepatic cholangiocarcinoma. It took a month in the hospital, my Mom took care of me (You used wonderful adjectives for your Mom, diddo for my Mom), along with my husband, son and friends. Get lots of help when she is home from the hospital. Caregivers NEED lots of help!!!! If people don’t offer…. ask them! I found many people don’t know what to say, so they stay away but given the question to help, they are there for you in a heartbeat. I went back to work part time four months after the operation and went back to work full time one year later. Let’s keep in touch. Gale.November 4, 2008 at 5:21 am #22538swarty1Member
Have just registered on this site, will be getting my first “chemo” treatment Dec. 1st, what can I expect?November 4, 2008 at 3:19 am #22537lisaMember
Hi Nikki, glad to have you join our little club. I hope the best for your Mom!
Gale, the forecast here is for rain, followed by showers, followed by more rain. If you were a Northwesterner, you would know what that means, haha!
I haven’t made peace with the fatness yet, but then again I think the reason I want to be thin(er) is to attract a man, so that seems like a rather superficial reason to want to be fit. Ha – no man would want to get involved with a woman with cancer anyway. So really the weight gain shouldn’t bother me, but a lifetime of angst over my weight is hard to overcome.November 3, 2008 at 4:06 am #22536nikki66Member
Hi Gale, it’s amazing to read your story, it really mirrors my Mom’s. She recently had surgery for CC, she is 57. We were told there might be a chance that the resection might not be possible, I guess that happens a lot with this cancer, they discover things are different once they are “inside.” We went into surgery with this thought in our head, we were SO NERVOUS, but it was a success. It took nine hours, they had predicted five so it went just a LITTLE over! They removed a large tumor (9cm), the whole left lobe of her liver, and her gall bladder. Her team of surgeons said it was the most complicated bile duct surgery they have ever done as they had to rebuild all three of her bile ducts. Anyways, reading your story makes me SO happy as you are obviously doing well a year-and-a-half later. Her surgeons have warned us that having such a large tumor almost always means a poor prognosis, they told her the surgery wasn’t so much a cure as a way to extend her life, so as much as we are happy the resection went well, there are always those dire words hanging over us. Can I ask how big your tumor was, what stage you were given? I just want to hear that other people have had “big” tumors and are still here, winning the fight. I hate this disease, I really do. My Mom is truly my best friend, she is one of the most kind, wise, hilarious, irreverent, interesting, warm women I have ever known, I will walk with her through this no matter what. Thanks to you and anyone else that has any info for me, we’re new to this dreadful disease…November 3, 2008 at 12:12 am #22535
Hi Lisa: Yeah, I’ve made peace with the fatness. Horray – the tumor hasn’t spread for you. How often do you go for checkups? I had bloodwork and CTScan last week and I see the oncologist tomorrow with the results. I hold my breath! I go for bloodwork every three months and CTScans every 6 months. Let’s keep in touch… Thanks again, Lisa. It’s starting to get cold here in New Hampshire – How’s the weather, your way?November 2, 2008 at 6:13 pm #22534lisaMember
I guess I’m dealing with scar tissue, too, from a failed resection. I’ve been having pain in my liver, and the scans show the tumor hasn’t spread – Yay! – but the pain is probably from scar tissue. I also used to be fit, but now I’m fat, hahahaha!November 2, 2008 at 1:56 pm #22533
Judy: Thank you sooooooo much. I found out I have bone spurs on my vertebre in my neck.. no wonder it causes pain. It’s soooooooo good to chat with someone with another resection. In reading most of the postings on this website, most doctors won’t operation. I had a feeling my operation was rare. Did they find CC again? WOW, two resections!!! My admiration goes to you. I too had fitness in my daily life. I walk when I can. When was your operations? My abdomen is L-shaped also. The day of my operation I took off my estrogen patch after being on them for 12 years. I found that if I watch what I eat and keep the stress down, the hot flashes and night sweats subside. I really wanted to know about energy levels in other. THANK YOU, THANK YOU for confirming it. I loved aerobics also. The owner of the fitness business has been in touch but had to tell her I just can’t anymore. Judy, it has been so wonderful to get your posting. Let’s keep in touch. Gale.October 11, 2008 at 1:26 am #22532judybMember
Don’t worry about moaning. This is the place for it. I’m sure friends and family get sick of it and it helps to get it off your chest. I’ve had 2 resections (2nd one failed- too close to blood vessels-damn it)and have a great L- shaped scar and my abdomen has never been the same since. Mind you I am 53 and going thru menopause so my shape would be changing anyway but I think surgery has made a major contribution. Having your IVC involved is major stuff and it’s great you’ve come thru it like you have. Energy levels are a problem. If you did what excercise you could I’m sure it would help. But that’s easier said then done I know. I used to be super fit before I was diagnosed and excercised heaps and even used to teach aerobics but I just can’t be bothered any more. My perspective to some things in life has definitely changed and these days if I don’t feel like doing something I don’t.October 9, 2008 at 11:33 am #22531
Thanks for your input. Has anyone had problems with scar tissue? Resections come with a very large incision. I’ve had pain back in May and it never really got addressed, except that the possibility of scar tissue grew to the point that it needed room and my insides had to “shift” to make room for the tissue. The pain went away. The doc did find a small hernia. I’m on Ecotrin a day due to the IVC replacement. Will I ever get my energy back? It’s been 1 1/2 years since my resection and I’ve made peace with the fact that my energy will not return to the way it was before. I don’t like being tired. The stress of it goes to between my shoulders and neck and causes headaches. Sorry to moan, I’m tired of being in pain around my neck and I have no energy.September 14, 2008 at 1:11 pm #22530
I will switch to Advil. Maybe that’s why I’ve been feeling lousy due to taking Tylenol. I took tylenol while recovering but now that the liver is grown back, I’ll switch to Advil. Thanks.
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