jeffg

Hi Carol,

I was 43 when diagnosed. I just pulled out my Operation summary. I was grade 3, stage 4 is all I can make out. There is another report somewhere with the full staging code, but do you think I can find it.

My left lobe of liver had 14x10x9 cm mass. Resected with 7mm margin
My gallbladder resected due to 6mm adenoma
2 lymph nodes of inflamatory state excised from hepatic artery
Right lobe of liver had 2mm cyst in segment 5 and also hemaginoma also segment 5

In light of of these additional findings, resection was undertaken. I guess they almost aborted, but probally found me to be a good specimen to operate on.

Carol, if you look at my picture on the site you’ll see that skinny cancer look on me as well. While looking at the picture imagine my neck area as a size 18. I too go through that same sequence, loose and gain a little, but like you said slowly loosing each time. That’s why I decided to stop chemo for at least three months to see if there is any possibility left of gaining back enough wait to get rid of this skeleton look or at least maintain. We’ll see what happens. probally should have tried sooner. I am now having the thoughts that chemo really did not do all that much overall other than initial shringage and held it at bay a couple times, that maybe it was just the slow growing of the cancer period. Oh well , it’s water over the dam now. Those were my choices and I have to live with the consequences. Did I shorten or lengthen my life. The fight is not over yet. Personally, I still feel positive energy and going to push on. I will be going backwards now and try some of the previous alternatives like IP-6 with inostol and immpower to try boosting my immune system hoping that will allow me to gain back some weight. I’m also pushing on with EFT as I’ve truly had some positive experiences practicing it. Who knows what will happen? Irene, I had surgery but recurrance to the left lobe and both lungs. It was not recurrance either .It was there but to small to see. Like I mentioned above, all we can do is follow through with the choices we make.

God’s Bless You Guys!
Jeff G.

Irene— I took that gamble and went over five years with no treatment other than monitor growth by ct scan every three months. In fact when I started chemo I was still doing okay. I even had micro mini mets in lungs for about fours years. I only started treatment because the size of tumor onn my liver had gotten approximateky 8.5by 6.8 in diameter and decided I should probally try something. To this day I cannot say whether chemo did me any good at all. If anything maybe broke my body’s defnse down and created some problems. Radiation twice. Once to liver and once to lower spine area approximately one year ago. both shrunk and remained stable as of today. Wish you the best Irene! You can only trial and error these treatments as your right, nobody knows for sure. In my opinion I would try staying on any one type of regime no more than three months maybe four. If it is not showing anything positive. By then it’s time to move on. Where are your tumors ? did anyone talk about some type of radiation? or HIfU? I took radiation 3-d conformal straight to one side of my remaining lobe of liver which was a big gamble, but it seemed to have payed off.
God’s Strength with making the tough choices!
Jeff G.

Hi Sophie,
I agree with Hris and Lainy onthe every three months and once a year MRI. I also feel that a chemo regimen for three months is suffucient time to know if it is holding things stable or reducing .If not I would push to try something else. My opinion is there is no sense in subjecying your body and wearing it iut if something is not working. Some oncoligist like to push it to the limit until it has really accumulated to highand all you get is more side effects but no efficacy in my opinion.

Bless Ya girl,
Jeff G.

Haiminh… Sorry to hear the troubles your Mom is going through. I’ve read your posts and going to be quite frank with you. If your mom is still bleeding I would go with your gut feeling and get a patient advocate or head of hospital involved. In my opinion this is not normal. Some bleeding yes ,but vomiting No. A surgery of this type can have complications. Do they know for sure were the bleeding is coming from? Is her blood pressure being monitored closely? Have they provided her with a transfusion? Transfusion may be needed. Normally a drain tube is automatically put in during surgery. Could there possibility be a bowel perforation? I would be watching closely and speaking your mind. Where did she have her operation? Is there other doctors available to check her out? Sorry for being so blunt, but if your uncomfortable and feel things are not adding up, play it safe my friend. As far as chemo that is an individual choice we all have to make. Some choose to do few rounds, other choose not. Their is no evidence either way in my opinion. Best wishes and good outcome for your Mom real soon. P.S. With all that going on keep close watch for any signs of infection. One last thing is she on any antibiotics? If she was actually vomiting alot of bile, a high possibility of infection. I’m no doctor Haiminh, I’m just thinking out loud as if it were my mom going through this. Is her health considered normal otherwise?

God Bless,
Jeff G.

Hi Rick, Here is my suggestions. Keep or throw. I do think the site can be condensed a bit and maybe help on the confusion of what to post and where.

Cholangiocarcinoma Foundation
Forum

From the Cholangiocarcinoma Foundation to you: Announcements and Updates to keep you informed

Cholangiocarcinoma Foundation Calendar of events: Meetings, Symposiums, Studies, Podcasts, Fundraisers, etc.

Suggestions/Ideas: If you have any suggestions or Ideas for the Cholangiocarcinoma Foundation, Please post here. What you suggest may be of great benefit to others

General Discussion and Events…….Delete

Website
Forum

Patient/Caregivers Sharing Current Events: Breaking local news, upcoming television specials, Podcasts, Events. Feel free to post times and dates and locations of any cancer related topics/events

Features and announcments and Suggestions……delete
Forum
Treatments

Combine… Research/ Clinical Trials

Combine… Nutrition and Alternative Treatments

Thought for the Day……. Nice but If not going to be used ……delete

Thats about all I can think of today.

Thanks Rick! P.S. I think a lot of people don’t realize that there are links on top that take them to the different places and subject matters that practically provides all infor you could possible get with the exception of personal experiences. If highlighting them links or somehow bring them links to members attention. Maybe in the Introductio area make note of above links. Just a thought.

Mybdm, I’m so sorry things are getting worst. Have they considred given him a bile thinner to maybe lesson the juandice? I don’t know what it’s called but it does help a little. If you haven’t gotten calles back call them again and let them know thing are getting worse and a would really like to get in asap. Even though he has intrahepatic it could be possible in my opinion to get some relief depending on location of tumors by placing a stent or drain. I sure hope you get to see someone real soon.
God Bless,
Jeff

To Barb (AKA) The Commander, A firm salute of honor and farewell to a remarkable women! Many blessings to you and your family. You will not be forgotten.
God Bless,
Jeff G.