CancerCompass message board discussion started by dl2006 on 4/21/2008 http://www.cancercompass.com/message-board/message/all,23266,0.htm Mon, 01 Dec 2008 00:00:00 GMT Mon, 01 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My Husband is 36 and was diagnosed with Colon cancer in December, had a colon resection - he has multiple mets on his liver and we've been told no options for surgery exist because of the size and number of lesions on the liver. He is on CPT 11, Capecitabene and Avastin - to control the cancer, does anyone know of other options to survive NOT just control this?  Have you heard of people surviving this - Not sure what else to do.Thanks for any comments dl2006 Mon, 21 Apr 2008 00:00:00 GMT I can relate.  My Dad has Stage IV Colon Cancer with many spots on his liver.  When he was first diagnosed I joined this message board.  If you go to SEARCH up at the top and type in "Stage IV Colon Cancer" you will see all of the responses I got to my post when I inquired about it.  There are PLENTY of people out there fighting it, and winning the fight.  YOU HAVE TO STAY POSITIVE! Good Luck :) DinaZ Mon, 21 Apr 2008 00:00:00 GMT Thank you, I just feel like I need to be doing more - we have 3 children and this is unbearable - such a nasty disease.  I wish I could read about all the people surviving beyond the typical... I will check your messages> dl2006 Mon, 21 Apr 2008 00:00:00 GMT check out RFA or radiofrequency ablation.  some hospitals can treat up to 9 tumours in the liver if they are <4cm.  even if not eligible now, the chemo will shrink some tumours in which case your husband might be eligible for this treatment.  it is not surgery but the ablation can kill off the tumours and the liver has the capacity to regenerate.  he would have to be off avastin for six weeks prior to this treatment due to risk of bleeding. so if he hasn't started chemo, that is the best time to ask.good luck and you are in my thoughts and prayers. daisychain Wed, 23 Apr 2008 00:00:00 GMT If you haven't already, I would seek a second opinion at a top hospital if you are in the US.  You can find them at  http://health.usnews.com/sections/health/best-hospitals In July of '04, I was told I had 18 months to live with treatment, but that I could die at any moment.  I went to the U of Minnesota and got a lot better odds.  I have been NED since September '05.I know of two other people who finally got other opinions at good hospitals and now have been told they can be cured.  StageIVartist is one.   Good luck. Cptmac Wed, 23 Apr 2008 00:00:00 GMT I don't know if this is any help at all but my brother-in-law is being offered a clinical trial using cetuximab to treat esophageal cancer. The information explaining the trial states that cetuximab is "safe and effective in head and neck cancer and colorectal cancer." Cetuximab "targets and blocks a specific part of the cancer tumor that is felt to encourage tumor growth called the EGF receptor. This receptor is found in head and neck cancer and colon cancer but is also found in esophageal and gastroesophageal junction cancer." You might ask about this drug because someone on the head and neck cancer message board responded that their loved one was "cured" using cetuximab. It has some pretty awful side effects but don't they all?     AttorneyAnn Wed, 23 Apr 2008 00:00:00 GMT Thank you, yes, I have asked about Erbitux (brand name) and Dr. says that will be the next line if the Bevacizumub (avastin) fails.  I will ensure we discuss with Onc. deborah dl2006 Wed, 23 Apr 2008 00:00:00 GMT I live in Canada and I know of someone who had a liver resection with more than 20 tumors in both lobes.  I believe he had his right lobe removed and had 3 remaining tumors in his left lobe which they rfa at a later date. (one was near his heart). His operation was in 2006 and I am happy to report that he is doing quite well considering that he was told that he was inoperable.  I do know that tumors have to be a certain size and location to order for the doctor to get a clear margin.  It all depends on what portion of the  liver they will be operating on.  The right lobe is a lot bigger than the left.  If you are only left with the left lobe  then the tumors have to be quite small (I believe less than 2 cm).  That is the situation I am in at present. I am on chemo hoping for 1 tumor to shrink enough to do a liver resection.   Have you had a second opinion?   I was denied the first time I asked about a liver resection (told it was not possible because of tumors in both lobes) and now it is a possibility.   Kimberly J Thu, 24 Apr 2008 00:00:00 GMT There is a guy from the colon club website that had 13 tumors rfa (the biggest was over 5 cm).  He had it done I believe in Charlotte, North Carolina. Hope this information helps.  Kimberly J Thu, 24 Apr 2008 00:00:00 GMT Hi, have you read about SIRT spheres?  My mom's oncologist wanted to try them for my mom when she had "enumerous" liver mets.  Search this web site, I believe there may be a video on this blog somewhere. Cookiemouse Thu, 24 Apr 2008 00:00:00 GMT This is so helpful. Thank you.  Some of his tumours are > 11cm, but he is responding well to the chemo and hopefully if they reduce enough, he will be a candidate for resection - so that is the goal that we are focusing on even though the Onc has not mentioned this at all - I guess they don't want to get hopes up.  We are at Princess Margaret - one of the best hospitals, but I will continue to ask about second opinions. Thank you dl2006 Thu, 24 Apr 2008 00:00:00 GMT I had colon cancer with multiple mets started in Feb.07, since then I recieved 12 weeks of chemo and was told by a sugeon he could operate and remove 60 to 70% of my liver and it would re-generate. I am in the process of trying to get a liver re-section at Thomas Jefferson university in Philadelphia, Pa, called a ultrasonic waves and uses a tool called Cusa which aspirate the liver cells. This operation doesn't require a scalpel, and seems to me to be a lot safer with very little blood loss and a quicker recovery time. The doctors name is Cataldo Doria, so try these web sites, Thomas Jefferson University Hospital and High-tech liver surgery for more info. I hope this can help you, sincerely avalon avalon Fri, 25 Apr 2008 00:00:00 GMT Thank you, this is wonderful to hear - I will continue to research - best of luck to you!Deb dl2006 Sun, 27 Apr 2008 00:00:00 GMT Hi. My dad was diagnosed with Stage IV colon cancer last May.  It has mts to the liver.  A year ago they said the liver was so bad there was no hope - surgery was not an option.  They would only be able to manage it for 1-2 years but not cure it.  We were devistated but refused to give up.  I spent hours researching and found another doctor out of state who was willing to help.  It was frustrating because we live in New York City and it seemed strange to go out of state for help.  We made it clear to the oncologist and surgeon that "keeping him alive" was not an option.  We wnated a cure and if they can't give us hope then we will go elsewhere.  That really made a difference.  The doctor's attitude changed completely.  He becamse more aggressive, putting him on chemo weekly rather than biweekly,One year later, the liver tumors have shrunk 80% but they are still not able to operate yet.  But, there is hope.  Next week, he will be getting the pump put in and  the tumor removed from the colon.   A small pump containing anticancer drugs is placed in the body. The pump puts the drugs directly into the blood vessels that go to the tumor. The purpose is to achieve greater exposure to the liver cancer than could be achieved by chemotherapy drugs that go to all parts of the body.He will continue to receive IV chemo but, in addition, he will receive chemo directly to the liver through the pump.My advise is NEVER GIVE UP.  It is important for loved ones to accompany your husband to his doctor visits so that the doctors know he has a lot of peopel fighting for him.  Every week, there are at least 3 of us at the office with my dad (weather he wants us there or not).  Be clear with the doctors that your husband is there to be cured, not kept alive.  If you feel the doctors are giving you no hope - go elsewhere.  There are options - there is hope.My dad's doctor is Dr. DiAdamo at Sloan Kettering in NY.  He is great.  The doctor we found out of state is Dr. Jerome Cannady in Pittsburg, PA.  Someone on this site told me about hi, when we were "hopeless".  I researched him and he is doing a lot of great things.  My dad decided to stay woth Dr. DiAdamo and things are going well.Good luck! cancerdaughter Thu, 01 May 2008 00:00:00 GMT  On 4/24/2008 Kimberly J wrote:I live in Canada and I know of someone who had a liver resection with more than 20 tumors in both lobes.  I believe he had his right lobe removed and had 3 remaining tumors in his left lobe which they rfa at a later date. (one was near his heart). His operation was in 2006 and I am happy to report that he is doing quite well considering that he was told that he was inoperable.  I do know that tumors have to be a certain size and location to order for the doctor to get a clear margin.  It all depends on what portion of the  liver they will be operating on.  The right lobe is a lot bigger than the left.  If you are only left with the left lobe  then the tumors have to be quite small (I believe less than 2 cm).  That is the situation I am in at present. I am on chemo hoping for 1 tumor to shrink enough to do a liver resection.   Have you had a second opinion?   I was denied the first time I asked about a liver resection (told it was not possible because of tumors in both lobes) and now it is a possibility.  I live in London Ontario.  Had surgery June 05 followed by radiation Folfiri and then Folfox chemo until it gave me too much numbness and potential nerve damage. As you would expect, the cessation of these chemo cocktails has resulted in slow but continous mets to my liver & lungs...now the Drs say it's game over in say 1 year as strategies such as ablation,resection, cryo or selective radiation are good for only localized disease.  I'm interested to know where you're located and more details as to your struggle.  heysous Thu, 08 May 2008 00:00:00 GMT