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Posted 9/3/2010 9:06 AM (GMT 0)
Hi, I am 40 and two months ago I was given the news that I have 4 tumors on my live with the largest one being 4cm. I and my wife are going through a lot right now since the Onc. told me that the average life span is 48 months with this disease. I also have colon cancer. It was the colon cancer that spread to my liver. I have stage IV cancer.

I have been hunting for a forum that was not out of date by years and this is the one I finally found. I need to talk to people about this since my cancer center does not offer a support group.

I was completely healthy before the fatigue and pain in my right since set in that caused me to go to the doctor.

I notice a lot of people are posting for their loved ones. This makes me sad that the loved ones are not healthy enough to post for themselves. I have read so many forums and this seems to be the case everywhere.

I feel very lucky that I am healthy enough to search and find a good forum.
Posted 9/3/2010 10:31 AM (GMT 0)
the moderator Connie is dealing with liver disease and cancer... I was a care taker.. my partner had liver cancer... we are here... you will get many responses.. and our thoughts and prayers are with you at this time.. Sandi
Posted 9/3/2010 3:19 PM (GMT 0)

Hi Rodney,

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.

hugs,

Posted 9/3/2010 4:51 PM (GMT 0)
Hello Rodney and welcome to HealingWell.

Yes, I think we have more caregivers than actual patients on this site.  But it's really the nature of the disease.  But we do have lots of patients with liver disease .....just not all with liver cancer.    Some patients are just to sick to participate or they don't want to know all the details of the disease.  My husband was like that.   Before he got too sick.......he didn't want to know.   He died of liver disease (which included liver cancer) in 2007.

And then some, if they are feeling okay.......they are trying to live life to the fullest while they can.  

But I think most of our caregivers share the information they learn with their loved ones or their family members.   Not only are we for support,  we try to educate people about the disease.   Doctors usually are not very forth coming with information about it.  I learned 98% of what I know about liver disease right here on this site.  My husband's doctors were useless in the information dept. 

Take care........thoughts and prayers.....  

 

Posted 9/3/2010 9:23 PM (GMT 0)

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.

Hugs,

Connie

Posted 9/4/2010 12:48 AM (GMT 0)
Thanks for responding. I have never used a forum before.
I have had a PET scan that only shows cancer in my liver and my colon. It was amazing to watch my oncologist run through the PET scan inside of a web browser with me. He showed me everything.

I was told by my oncologist that by treating me with the chemo they are attacking both the liver and the colon cancer. I hope this is the case.

I had an appointment with him yesterday and used my notebook of questions. I am kind of keeping journal for my family as well as to help me remember things when I go to the oncologist with questions.

I made my next appointment with my oncologist to include my wife on her day off. There seems to be a forgetting problem with me lately or at least a comprehension problem. I believe that my wife will help me by being there when he says the answers to my questions and I think she has some questions of her own too.

I asked him about the radio active glass beads and the chemobilization and he said those are on the list to be used once chemo has run its course. I am under the understanding that he is trying to shrink the tumors as small as they can get before he does anything else. His main thing that he wants to do is the the ablation on the liver once the cancer cells have shrunk during chemo.

I have had this severe pain in my right side and shoulder for about a week and have been using dilauded for the pain. I asked the oncologist yesterday about it and he told me that one of the tumors in my liver could have underwent infarction. He gave me a patch for the pain as well as the dilauded that I have been taking and tonight the pain is relieved.

I asked him as well what about a support group? Does this hospital have one? He said no but that I should look up the American Cancer Society and see what they have locally. I am a little shocked that they have so many patients but no support group. Not being negative about that but still shocked.

The hospital I am going is called the Great Lakes Cancer Center. I was going to go the cancer center called Karmonos in Detroit but I hac my current oncologist talk to the doctor at Karmonos and make sure that what he is doing is what Karmonos would do before I agreed to go the the Great Lakes Cancer Center. They agreed which saved me a lot of road time.

My diet is pretty good with vegetables and water. My wife is so caring and looks after me so well. She is the best person I have ever met. I am very lucky to have her. We have been married for ten years and have two sons ages 1 and 6. They are not an easy chore since the 6 year old is constantly wanting the unthinkable and the 1 year is constantly getting into everything. But I do not know what I would do without there beautiful faces around nagging me.
Posted 9/4/2010 1:26 AM (GMT 0)
Rodney, thanks for the background info. Personally, I would feel more comfortable if you got input from a hepatologist regarding the tumor treatment for the liver. Your doctor seems to be on the right track, but if it were me I'd want a second opinion from a liver specialist.

You are indeed fortunate to have such a wonderful family.

Please keep us posted on your progress. I'll be interested to know how much the chemo shrinks the liver tumors.

ETA: Do you know if the liver tumors are all in one lobe?

Hugs,
Connie
Posted 9/4/2010 2:52 AM (GMT 0)
Dear Rodney... you sure have your hands full ... as your wife does.. stay in touch.. we're here...you're in my thoughts and prayers... Sandi
Posted 9/5/2010 12:48 AM (GMT 0)
My largest tumor which is 4cm and is located in the left lobe. I have three smaller ones in the right lobe.

After reading some posts on this forum it looks as though I should have done chemobilization first and not the 5FU that I am currently on.

Since my tumor marker is so high, 674 down from 800 a month ago, does this make it even harder for the chemo to work? I have seen a post where some was 100+ and the outlook was not good.

Can anyone explain the benefits of having a hepatologist? I need to know what I am talking about when I request a referral from my primary care physician?
Posted 9/5/2010 1:13 AM (GMT 0)
A hepatologist is a liver specialist. They deal with liver disease, including liver cancer, all the time. I would think that's all you would need to know to request a second opinion from one.

By a tumor marker, do you mean your AFP? Mine was never very high, despite the huge tumor. In fact, my labs have never really been an indication of how sick I am or how well I'm doing.

I agree that the first thing you should have done was to have chemoembolization. That's pretty standard for liver cancer. However, your oncologist may be more concerned about the colon cancer since that was the primary cancer. They could end up taking your left lobe if they are able to zap the smaller ones in your rt. lobe. The rt. lobe is the larger one, so if those smaller cancers could be eliminated, you wouldn't lose as much liver as I did.

Did your doctor mention taking a section of your colon out?

Hugs,
Connie
Posted 9/5/2010 2:12 AM (GMT 0)
Then it seems common sense that I should have seen a hepatolgist from the start. I will make an appointment to get a referral ASAP. THANK FOR THE COMMON SENSE ANSWER:-) I need that.

The doctor did mention something about removing part of my colon. From what the oncologist said the cancer is 8" in to the colon and this is a good thing he said for removal of the cancer. He said that he was not concerned about the colon cancer as much as he was about the liver.

Now that I think of I believe the reason for the 5FU wast to treat the colon cancer as well.

I have to say that my pain is the only symptom (controlled with pain killers) other than fatigue from over doing activities like building shelves in the basement for my wife. But I am feel like I am waiting for something to happen big that puts me in the hospital. It just feels like a waiting game and with my CEA (I think that is the acronym) being so high I feel like the doctor has a real time line for life that he is not telling me.
Posted 9/5/2010 2:41 AM (GMT 0)
Rodney, Welcome to the forum. I'm really glad you found us. You have found a lot of knowledgable, caring people here. But, I guess you have already learned that. My husband has cirrhosis. Most of the knowledge I have has come from this site. The people here have been a godsend to me.

My thoughts and prayers are with you as you fight this battle.
Posted 9/5/2010 3:25 AM (GMT 0)

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.

Hugs,

Connie

Posted 9/5/2010 3:29 AM (GMT 0)

Rodney,

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.

  9. No posts of copyrighted material.  Information copyrighted or owned by any individual or entity other than the person posting should not be posted on the message boards without the consent of the owner.

Posted 9/5/2010 3:59 AM (GMT 0)
Rodney, I am sorry you are dealing with this. I havent had much experiance in the liver cancer area, I had part of a kidney removed. I do know the best medicine in the world is free! Positive attitude, laughter, lots of love and information!! Actually the best color for cancer is RED, eat plenty of red foods...no not jelly beans.... red peppers, tomatoes etc. Enjoy every single day, wake up with the positive thoughts about all your gifts. I have seen people who have beat all odds. I have a friend who lost her memory and ended up comatose with stage 4 brain cancer, she woke up after they relieved some of the pressure on her brain and was given a dire prognosis. Not operable, radiation and chemo could give her a few months. Well guess what 6 months later she was back to work as an accountant at a college and she is still doing very well over a year later!!! Her Dr's are amazed, as her friend I say her positive thoughts made the difference so you do all you can and educate your self!
Sue
Posted 9/5/2010 4:20 AM (GMT 0)
DGinSD thanks for the information.

I am starting my next cycle of chemo next week. For the past cycles I feel that I did not know what was coming. This time I am mentally prepared. I will not have such a down attitude for this cycle. I will endure the pain (or what seems like pain) and fatigue. I truly believe that I am going to beat this but I want to use this forum to help me along the way. You all seem so knowledgeable and I want to use what I learn from you all to help others of this forum in the future.

I have been searching the cea marker tonight and it seems to be relative to the patient only. It must also come from the same testing source as well to be comparable to previous scores.

Thanks I will keep posting my progress. Especially next week when I am going through the chemo process again.

Post Edited (RodneyR) : 9/4/2010 10:33:07 PM (GMT-6)

Posted 9/5/2010 5:39 AM (GMT 0)
Rodney, I'm a firm believer in positive thinking and the power of prayer--which, to my mind, are the same thing.  You might also try imaging techniques while you undergo chemo--slaying the dragon (cancer), etc.  If you are feeling anxious or in pain, visualize some place very calming.

Our thoughts will be with you.

Hugs,

Connie

Posted 9/6/2010 2:07 AM (GMT 0)
Alright Forum Members... this week is the Rodney Toga Week... all members please... put on your version of the Toga... take a deep breath... look into whatever direction you feel gives you energy... hummmmmmmmmmmmm and think positive thoughts for Rodney.......... now where did I put that white tent of mine... hmmm hmmmm... positive thoughts and prayrs this week for u... oh and a public disclaimer... this is a joke... nothing but a joke.. except the prayer and positive  thoughts... ur way Rodney turn turn turn
Posted 9/6/2010 11:04 PM (GMT 0)
So I should take my toga off now?? Dagnabbit! It's comfy!!! Hugs and positive thinking going your way Rodney!
Posted 9/7/2010 3:17 AM (GMT 0)
Toga, Toga, Toga......prayers coming your way Rodney!

Mer
Posted 9/7/2010 4:29 AM (GMT 0)
Well I am not taking off my toga.....Never been to a toga party before...Can you guess what color mine is???  Lot's of thoughts and prayers going your way Rodney.........
Posted 9/7/2010 11:15 PM (GMT 0)
Thanks for being fun and upbeat everyone.

I now have a CEA of 3375.8 from a previous 674 and even further back 800.

I hope I am saying this right but my ONC believes this maybe that the pain in my side and the high CEA are a result from a tumor that enfarted.

They are retesting my blood since I started my 5th cycle today and asked about my CEA. They acted like they didn't even know what my CEA was at 3375.8 until I asked about it.

Can you all please comment on this.
Posted 9/7/2010 11:27 PM (GMT 0)

Hi Rodney,

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.

Posted 9/8/2010 12:09 AM (GMT 0)
Rodney, I believe the term you were looking for was "infarct." It's an area in an organ that has died due to cessation of blood supply. This is the pain I was telling you I had after treatment of my tumor.

I don't know much about the CEA. They've always used AFP with me. However, as I mentioned previously, it's never been an accurate reflection of what is going on with me.

It's entirely possible that they weren't aware of your increased CEA if it wasn't in the computer or they hadn't looked it up or had your reports in front of them. You do have to be very proactive with your care. Get copies of all lab results and scans!

Hugs,
Connie
Posted 9/8/2010 12:39 AM (GMT 0)

DGinSD said...
Hi Rodney,

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.



My, Alkaline phosphatase U/L 174
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