I'm happy you found this forum. It definitely helps to have people to talk to. As Sandi said, Connie (our moderator) is a liver cancer survivor. She'll be back on later today so I'm sure she'll respond to you as soon as she reads your post.
Have you started any treatments yet? Have they done a PET scan to make sure the liver is the only metastasis you have? Your best defense is positive thoughts and knowledge. It's great that you do feel well enough to join a group and search for info. Bring a note pad with questions everytime you see your doc. It'll make it easier to remember everything you want to ask and what they tell you. I'm sure it's very overwhelming. It'll also help if someone goes to your appointments with you. I hope they find the treatment that is right for you and keeps you here for much longer than 48 months (that's just a number, not something to live by...be a fighter and hopefully you beat the "average"). My mom is battling lung cancer and the drug she is on now is doing a remarkable job.
Hi, Rodney and welcome! Here I am...the liver cancer survivor they spoke of. I have been cancer free for over 3 years. I had one huge tumor that was 12 cm x 11.5 cm. It was a primary liver cancer that had spread into the inferior vena cava (large vein that comes off the liver.) Shands had said there was nothing they could do. I just didn't feel I could accept that, so I made an appt. at Mayo and they literally saved my life. They treated me with chemoembolization and a study drug, TheraSphere, both of which shrunk the tumor and the metastasized part back into the tumor and killed the right lobe. I ultimately had the rt. lobe of the liver removed. They keep a very good check on me, doing an MRI with Gadolinium every 6 mos., along with blood work and a consult with my hepatologist.
What has been done for your colon cancer? Are they treating it or suggesting surgery or what? Since your liver tumors are much smaller than mine was, you could possibly have cryotherapy or laser surgery. You almost certainly could have chemoembolization. Liver cancer does not respond to the typical systemic chemo. It must be targeted to the tumors.
I was told by Mayo that I had no more than 6 mos. left to live without treatment. Thank goodness, treatment and surgery worked for me. There's no guarantee that the cancer won't return, but meanwhile I've had time that I would not have had otherwise.
Where are you being seen? If you are just seeing oncologists or a GI doc, I would recommend getting a referral to a hepatologist. Get other opinions! What kind of support system to you have?
Meanwhile, eat a healthful diet. Eliminate beef. Eat lots of fresh fruits and veggies. Drink plenty of water. Get a lot of rest. In general, treat your body well.
I generally check the forum every few hours, so if you have any questions I will try to answer.
Not necessarily, Rodney, should you have gone to a hep doc first, since your primary cancer is in the colon. I saw an oncologist first, who then referred me to a hepatologist. However, both the oncologist and hepatologist were at Mayo, as well as my interventional radiologist and surgeon. I'm not suggesting you ditch your current dr., but that you see a hepatologist for a second opinion on treating the liver tumors.
I think your current doctor's reason for chemo is to treat the colon cancer and he's also hoping that it will shrink the liver tumors. However, I've not seen any positive data on that re: shrinking liver tumors. They need to be targeted individually. If you are feeling pain, it's likely due to the colon cancer or to tissue being killed by the chemo. I didn't experience liver pain until after the targeted treatment. My doctor said it was from tissue dying. However, the pain was minimal and managed with meds I already was taking.
Please read what I pulled from a paper on the web. I included the link to the full article.
The fact that your CEA went down is promising. So I wouldn't rush to think that it is your timeline of sorts. As Connie said, please ask for a referral to a hepatologist. You should have a team working with you and there should be a hepatologist within the same network/clinic as your GI doc (assuming you are seeing one of those for the colon cancer as well as your oncologist). A hepatologist is a GI doc with a fellowship in liver disease so there's an added specialty to their knowledge.
Hope that helps a little.
( http://jjco.oxfordjournals.org/cgi/content/full/29/11/550 )
Dany, I'm sorry but I had to remove that article due to copyright rules. We can leave the link, though.
Post Edited (RodneyR) : 9/4/2010 10:33:07 PM (GMT-6)
What's your alkaline phosphatase value? I've read a couple of sites that said that using the CEA as a predictor for prognosis is not reliable.