lulu07
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Hi Jeff – I don’t know if this will be of help to you or not. I was diagnosed with intrahepatic CC in Oct 2009 on January 19 2010 I had surgery. Medical term for my surgery was Right Trisegmentectomy they removed the right and caudate portion of my liver and then performed the bile duct resection. In the right side of my lliver I had an 8cm CC tumor with a 2cm satellite nodule right behind it. Again I don’t know if this will help because my CC was inside of my liver howevery, I wish you the best of luck and will keep you and Marc in my thoughts and prayers. Nancy
Hi Kathy
Just to add a thought about the low WBC. Halfway through my chemo my WBC started to drop also not enough so I could not have chemo. As soon as that happened my oncologist prescribed Neupogen single injectables which generates bone marrow to produce more WBC. I administer the shots myself as of this point I only need 2 so I have chemo on Mon and Tues then I will give 1 injection on Wed and 1 more on Friday then have bloodwork on Monday to check it all out. I have been doing this since May it has been extremely successful since I have not had to interrupt my chemo schedule I actually got to reduce the shot to 1 time a week for a couple of times but am now back to 2 times. It is so easy to give to yourself I use my lower abdomen plenty of fat to pinch there. I also have been taking Emend and feel it is pretty much a miracle drug since I have never had any nausea and did not have to use my back up Zofran or Compazine at all. Wishing u all the best and my thoughts and prayers will be with you.
NancySneezie
Congratulations on your clear Ct Scan. I know the anxiety you felt prior to having the scan unfortunatley I think that is just another thing we need to deal with because of the CC even though we have had resections. Have you asked your oncologist or your PCP recagarding some drugs for anxiety I personally know Xanex works for me. As far as your Dr telling u that u may not be in the 40% of 5 year survivors I don’t believe anyone can know that his or her comment may have just been thrown out there but has had a huge impact on you. I would revisit that comment with the Dr. next time I had a visit pin him or her down and ask directly why do you think that. My doctors have never given me a time frame even prognosis just that this cancer has a high reoccuence rate but in me it may or may not reoccur. I know it is extrememly hard to function sometimes with this disease you are right just put one foot in front of the other. I’am hoping that you find some peace and will be praying you receive that which you need.
Nancy
Sneezie
Thanks for posting. I’m sorry to hear that u have 3 different Drs that are not on the same page. My surgeon who is at Mt. Sinai in NYC recommended my oncologist to me it was never a question who I would see and I feel I’m in excellent hands he to is in NYC not far from where The World Trade Centers were. I’m handling the chemo well no nausea, no hair loss, very surprised at that but I was prepared to deal with it. I have a double port-a-cath in my chest on the left side I go 2 days in a row take home a pump for overnight chemo. Thanks for addressing the rumbling underneath my scar it makes total sense, sometimes it is numb and tingly. The only thing I’m very sure of is that chemo is essential after surgery maybe there is someone on this site who knows of an ocologist who has treated patients with CC in your area. Please keep posting. Thanks NancyHi Missy and Sneezie
I was diagonosed with intrahepatic cc in Oct 09. This is a little bit odd but I had surgery on Jan 19,2010 also. I had my right lobe removed 2 lymph nodes 1 positive for ca the other negative and my gallbladder. I’m now doing 6 month adjuvant chemotherapy receiving 5 different drugs I know I am being given gemzar, oxaliplatin and 5-FU I believe that is fluourinol plus 2 others I go 2 days in a row and then have a week off. Had a clear Ct Scan in April and go for follow up at the end of July. Please keep posting both of you. Snezzie how long r u going for chemo and Missy how long was your chemo? Both of you as well as everyone on this website who is dealing with this disease in some way is in my thoughts and prayers everyday. Missy I know what u mean about thinking something is going on inside your stomach lots of weird feelings, and pangs I to am anxious about these things but as my PA tells me I’am healing from a major surgery and should expect these things. That does make me feel a little better. NancySo sorry to hear of the delay in the diagnosis of your mother. Was a biopsy of the liver or where ever her tumor is done?
Kris
Your attitude and your positive thinking are definitely a bright beacon of light for those of us fighting this disease. I had surgery in January 2010 clear ct scan in April – having 6 months adjuvant chemo with another ct scheduled for end of July. You are right we need to keep on hanging in there may be new treatments out there for us in a matter of months or years. They are making great strides with other types of cancer maybe our breakthrough will be soon. Keep posting!
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 Nancy
Agreed that people heal differently from surgery. I am status post hepatectomy Jan. 19th. I’m 51 years old and was in very good health going into surgery. 3 months have passed I’m healing well but at 1 month things were a little difficult. I had no post op complications but the body does not bounce back as we would want it to. All of Kris’s ideas were great especially about the pets I have a dog and the first time I was able to walk her again made me feel like I was really going to be able to do the things I used to. I have a very large family and I love them all dearly but, I wanted to do things on my own I know my limits. Of course they did help a great deal in the beginning but if your friend feels she is up to something let her try. I think the most important thing for me was when people would talk to me about what was going on at work, their families, the neighborhood etc… CC consumed and continues to consume much of my life but to just speak about everyday occurences made me feel better and put the CC in the background just for a little while. You sound like a wonderful friend and I wish your friend nothing but the best. Know that my thoughts and prayers will be with her. Nancy
Hi Laurie
I’m one of the fortunate ones who was able to have a liver resection with Dr. Myron Schwartz at Mt. Sianai actually it was more a hepatectomy where he removed the whole right lobe of my liver. I’am 8 weeks post surgery feeling fine and having adjuvant chemo with Bruckner Oncology at New York Downtown Hospital. Dr. Schwartz referred me to Bruckner. I was told by another very prestigious NY cancer center that my only course of action was chemotherapy. I introduced myself on this wonderful website and was e-mailed by my guardian angel Marc whos mother had just had surgery with Dr. Schwartz what hope that gave me it made me push forward and get that all important 2nd or 3rd opinion if necessary. I can not sing the praises of Dr.Schwartz and his associates loud enough. He is kind, compassionate and a brilliant surgeon. This is a terrible disease I’m 51 years young no symptoms just boom!! my whole world changed. Please come to this site frequently as there are just so many wonderful people sharing all important information. I will keep you in my thoughts and prayers. Nancy
Randi I’am 2 weeks status post liver resection which Sloan Kettering told me was not possible. I received an e-mail from a gentleman on this site who I now consider my guardian angel. He recommended Dr. Myron Schwartz at Mt. Sinai. I called Dr Schwartz office on a Monday and was given an appointment that Wednesday. After review he determined I was a candidate for surgery and scheduled me within 2 weeks. You should bring all of your radiology discs with you. Dr. Schwartz is an extremely gifted surgeon and compassionate human being his whole surgical staff is top notch. I wish you the best of luck and will keep you in my thoughts and prayers.
Hello to everyone. I have not posted on the site for awhile I have been extremely busy. In October 2009 i was as diagnosed with cc. An actual tissue sample was never obtained from the tumor or my liver
but they called it cc. I turned extremely jaundice and had an external stent placed to help with the bile while I waited for an appointment with a surgeon at one of the top notch cancer centers in NY. Ay my appointment my surgeon said that liver resction was possible but just a few more tests to make sure cancer had not spread to any other organs. Over the next month and a half they internalized the stent perfromed a laparoscopy on the peritoneum they were sure the cancer had spread to my stomach. Yet again no biopsy could be obtained so pelvic washing were done which turned out negative. The surgeon said all we needed now was a PET scan and if it was clear we would proceed with surgery. I had the PET scan second week of October. My surgeon called me and said that there were suspicious findings in my chest no surgery. He advised me to see an oncologist in the same group. The oncologist said all that could be done for me was chemo when I questioned other therapies or treatments she just shook her head and said I was not a candidate. I’m 51 years old this was just devastating. Here is the part where this wonderful website came to play I posted exactly what the oncologist told me I think it was Marion who replied her advice was as soon as you hear the words NO you pick up your belongings and move on. Shortly after that a gentlemen named Marc who was also on this site because his mom was diagnosed with cc sent me an e-mail. In the e-mail he urged me to get a second opinion from a Dr Myron Schwartz at Mt Sinai Medical Center in NY he is the head of surgical/oncology and associate director of their liver transplantation program. I now consider Marc my guardian angel. I called Dr Schwartz office and received an appointment within 2 days. Dr. Schwarts looked over all of my studies which their were many he looked me straight in the eye and said I do not believe that the cancer has spread to your chest. I believe the suspiscious findings were due to the drainage procedures and laparoscopy you had. Imaging how I felt this man had some much confidence and compassion. We repeated the ct chest and abdomen that day he was correct all had cleared up. I had a liver resection last week on the 19th he took the whole right lobe and a tiny lesion on the left lobe. I now have 40% of my liver which Dr. Schwartz said is more than enough. I do not know how I will ever be able to thank Marc for that e-mail and Marion for giving me that push I needed. I would urge each of you to check this site everyday for their is information that just might be invaluable to you. I know I still have a long journey ahead of me but at least now I will get to travel that road. My thoughts and prayers are with each and every one of you.Hi Cin
Regarding the CA 19 tumor marker and also the CEA tumor marker both can be misleading and are just a tool one piece of the puzzle in determinining diagnosis. Both of my tumor markers are well within normal range, and have been. My prayers and thoughts are with you,your father and family.
Beth
My thoughts and prayers are with you and Dave. This is something my 87 year old father sent to me after I was diagnosed:
This morning when I wakened and saw the sun above i softly said good morning Lord bless everyone I love, and right away I thought of you and said a loving prayer that he would bless you specially, and keep you free of care. I thought of all the happiness a day could hold in store I wished it all for you because no one deserves it more.
