CancerCompass message board discussion started by gran4 on 6/22/2008 http://www.cancercompass.com/message-board/message/all,25296,0.htm Sun, 23 Nov 2008 00:00:00 GMT Sun, 23 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My 41 year old nephew was diagnosed with colon cancer, stage 4, with mets. to 3/4 of his liver in June of Last year.  He has been seen by an Emory (Atlanta), surgeon and oncologist who have done only chemo for the past year.  The surgeon had said that they would have to shrink his tumor before they could do surgery.  The tumor did not shrink, they have not targeted treatment for the colon because they were concerned about the liver.  Now, his last pet scan showed that the tumor to the liver has now spread to the small "good area" and also small spots in his pelvic.  The tumor in the liver is now "breaking away" which I believe means spreading to other sites.   When my sister asked the oncologist why they did not do radiation, they were told it could not help him.  It appears to me that they have not been very aggressive in his treatment.  He was told his tumor to the liver was 21 centimeters initially and has not shrunk.  Has anyone had successful treatment with a tumor this large?  I feel that if they had done the surgery early on, or at least added radiation to the chemo, his chance of recovery would be much greater.  He has a large support group of family and churches praying for him.  We have asked for a miracle, and it looks like only a miracle can help at this point.  I have been reading about the Cancer Treatment Centers of America, and they seem to work with people who have been told they have inoperable cancer.  Has anyone had success through them, or have any suggestions of successful treatment?  I pray that all of you who are going through this very difficult journey will find treatment that will heal you from this awful disease.  Thank you.  gran4 Sun, 22 Jun 2008 00:00:00 GMT I am 44 a 3.5yrs stage 4 fighter letting you know that you get through this.maybe a second opioion, Mayo clinic has done me well.They like to rersect the whole half of the liver so maybee tumor size workable. They also ablate tumors and recect the colon all under one surgical precedure.You need to change chemos to get those posative results, CPT11 and eritux worked for me.. nock those tummors down and get them removed. Stay strong your young Verlin Desprate For Answers Sun, 22 Jun 2008 00:00:00 GMT  On 6/22/2008 Desprate For Answers wrote:I am 44 a 3.5yrs stage 4 fighter letting you know that you get through this.maybe a second opioion, Mayo clinic has done me well.They like to rersect the whole half of the liver so maybee tumor size workable. They also ablate tumors and recect the colon all under one surgical precedure.You need to change chemos to get those posative results, CPT11 and eritux worked for me.. nock those tummors down and get them removed. Stay strong your young Verlin Thanks you so much for your reply.  I appreciate you taking the time to offer advice which I believe could  be very beneficial to my nephew.  I am glad you had good results from your surgery.  Could I ask you how large your tumor was when your resection was done?  Was it done early on in your treatment?  I am very concerned that his doctor has continued just chemo for a year and everything just seems to be growing and spreading.  I pray that my nephew will have a good result such as yours has been.  My thoughts and prayers are with you and anyone else gong through this very difficult journey.  Thanks again, Gran4 gran4 Mon, 23 Jun 2008 00:00:00 GMT The thing to remember is, everyone is different.  I chose to go to the U of Minnesota in Minneapolis.  Where my tumor was located in my liver, it didn't make any difference whether or not I did chemo or RFA before surgery.  Either way, the entire right lobe of my liver would be removed.  The treatment he is receiving may also depend on where the tumor is in his colon.I signed up for a stage II clinical trial, so I had my colon resected on 8-13-04, my liver had to be resected exactly four weeks after the first surgery on 9-13-04 and I have not had evidence of disease since.  I have been off of chemo or any treatment since June of '05.If they haven't already, it never hurts to get another opinion.  Emory is a great hospital and all of their records should be computerized.  It shouldn't be a problem for them to send his record to Mayo, the U of MN, MD Anderson or CTCA for another opinion.  The doctors in my state originally gave me no hope, said I could die at any minute, but that with treatment I could live for 18 months.  I am forever thankful that I chose to get many opinions and then chose the U of MN for my treatment.      Cptmac Mon, 23 Jun 2008 00:00:00 GMT  On 6/22/2008 gran4 wrote:My 41 year old nephew was diagnosed with colon cancer, stage 4, with mets. to 3/4 of his liver in June of Last year.  He has been seen by an Emory (Atlanta), surgeon and oncologist who have done only chemo for the past year.  The surgeon had said that they would have to shrink his tumor before they could do surgery.  The tumor did not shrink, they have not targeted treatment for the colon because they were concerned about the liver.  Now, his last pet scan showed that the tumor to the liver has now spread to the small "good area" and also small spots in his pelvic.  The tumor in the liver is now "breaking away" which I believe means spreading to other sites.   When my sister asked the oncologist why they did not do radiation, they were told it could not help him.  It appears to me that they have not been very aggressive in his treatment.  He was told his tumor to the liver was 21 centimeters initially and has not shrunk.  Has anyone had successful treatment with a tumor this large?  I feel that if they had done the surgery early on, or at least added radiation to the chemo, his chance of recovery would be much greater.  He has a large support group of family and churches praying for him.  We have asked for a miracle, and it looks like only a miracle can help at this point.  I have been reading about the Cancer Treatment Centers of America, and they seem to work with people who have been told they have inoperable cancer.  Has anyone had success through them, or have any suggestions of successful treatment?  I pray that all of you who are going through this very difficult journey will find treatment that will heal you from this awful disease.  Thank you. First off....Cancer Treatment Centers of America.....a BIG no no in my book. Seriously...if you have to advertise for business...that would be the first sign. A friend of mine, whom I met while my mother was receiving chemo, had went there a few years back. She says that is probably one of the worst things that she has ever did concerning her cancer. Sure...they fly you there...have a limo pick you up at the airport...feed you extravagant meals...but one thing that they lack is top notch cancer care. They may make you feel good on the outside but do nothing to help you on the inside. She feels that during her visit to their establlishment....her cancer care went down hill 190%. Sorry to say, she is now pretty much at home and waiting to die. When I researched the best cancer hospital in the world....MD Anderson in Houston Texas popped up. We live in Ohio...but travel across the US to get the best possible cancer treatment out there. I am not saying that there are no excellent cancer hospital around you...but according to the statistics...MD Anderson is 100%. My 64 year old mother, having Stage 4 Colon to Liver Mets...couldn't afford to 'try any others out.' She needed the very best from the start...and that's what I did for her! Best of luck to you! MyMomHasStage4Colon Wed, 25 Jun 2008 00:00:00 GMT Ive had a tumor close to that size, and if it shows that the tumor is breaking away (thats good)  that means the chemo is working, thats what my tumor did over a year in time, finally the tumor shrank enough so my surgeon could resect my liver, he went in and got it all and now im cancer free, taking prevent chemo,  after reading your post,  I would get a new cancer team, or  a second opinion.Bobby Bobbygene Thu, 26 Jun 2008 00:00:00 GMT  On 6/26/2008 Bobbygene wrote:Ive had a tumor close to that size, and if it shows that the tumor is breaking away (thats good)  that means the chemo is working, thats what my tumor did over a year in time, finally the tumor shrank enough so my surgeon could resect my liver, he went in and got it all and now im cancer free, taking prevent chemo,  after reading your post,  I would get a new cancer team, or  a second opinion.BobbyIt is definite that a second opinion is needed immediately.  I don't understand why  doctors specializing in surgery for cancer patients would have such a difference in treating patients with the same types of problems.  Why would his doctor, from supposedly a good hospital, not do the surgery.  He was told that the tumor "breaking away" is not a good thing, that it is spreading to other areas of the body?????   I am very happy for the treatment you received.  It appears that your doctor knew what he/she was doing.  We are now checking into other hospitals specializing in his type of problem and I am hoping we can get him a doctor that will offer him the right treatment to beat this cancer.  Thank you for offering your thoughts.  We appreciate it very much.   gran4     gran4 Fri, 27 Jun 2008 00:00:00 GMT  On 6/25/2008 MyMomHasStage4Colon wrote: On 6/22/2008 gran4 wrote:My 41 year old nephew was diagnosed with colon cancer, stage 4, with mets. to 3/4 of his liver in June of Last year.  He has been seen by an Emory (Atlanta), surgeon and oncologist who have done only chemo for the past year.  The surgeon had said that they would have to shrink his tumor before they could do surgery.  The tumor did not shrink, they have not targeted treatment for the colon because they were concerned about the liver.  Now, his last pet scan showed that the tumor to the liver has now spread to the small "good area" and also small spots in his pelvic.  The tumor in the liver is now "breaking away" which I believe means spreading to other sites.   When my sister asked the oncologist why they did not do radiation, they were told it could not help him.  It appears to me that they have not been very aggressive in his treatment.  He was told his tumor to the liver was 21 centimeters initially and has not shrunk.  Has anyone had successful treatment with a tumor this large?  I feel that if they had done the surgery early on, or at least added radiation to the chemo, his chance of recovery would be much greater.  He has a large support group of family and churches praying for him.  We have asked for a miracle, and it looks like only a miracle can help at this point.  I have been reading about the Cancer Treatment Centers of America, and they seem to work with people who have been told they have inoperable cancer.  Has anyone had success through them, or have any suggestions of successful treatment?  I pray that all of you who are going through this very difficult journey will find treatment that will heal you from this awful disease.  Thank you. First off....Cancer Treatment Centers of America.....a BIG no no in my book. Seriously...if you have to advertise for business...that would be the first sign. A friend of mine, whom I met while my mother was receiving chemo, had went there a few years back. She says that is probably one of the worst things that she has ever did concerning her cancer. Sure...they fly you there...have a limo pick you up at the airport...feed you extravagant meals...but one thing that they lack is top notch cancer care. They may make you feel good on the outside but do nothing to help you on the inside. She feels that during her visit to their establlishment....her cancer care went down hill 190%. Sorry to say, she is now pretty much at home and waiting to die. When I researched the best cancer hospital in the world....MD Anderson in Houston Texas popped up. We live in Ohio...but travel across the US to get the best possible cancer treatment out there. I am not saying that there are no excellent cancer hospital around you...but according to the statistics...MD Anderson is 100%. My 64 year old mother, having Stage 4 Colon to Liver Mets...couldn't afford to 'try any others out.' She needed the very best from the start...and that's what I did for her! Best of luck to you!Wow, I am glad to hear that about the Cancer Treatment Centers of America.  When you get desperate and are only hearing negative comments and little hope in your treatment, you can get taken in by the claims of a hospital that will get results when others have given up on you.  I did pull up M.D. Anderson and they do have the top rating.  We are going to try and see if they will take him as a patient.  My sister in law's sister's husband was turned away from them a couple of years ago because they said his cancer was too far gone.  What kind of treatment plan do they have your mom on?  Has she had surgery?  Do they feel she can beat this?  I know she appreciates you taking such good care of her.  My mother died 4 years ago with renal cancer at age 80 after being diagnosed only 5 months. She was in-operable due to other medical conditions as well.  I will be thinking of your family and would be interested in hearing of your mothers treatment and progress when you get a chance.  thanks for the good advice.  gran 4       gran4 Fri, 27 Jun 2008 00:00:00 GMT  On 6/23/2008 Cptmac wrote:The thing to remember is, everyone is different.  I chose to go to the U of Minnesota in Minneapolis.  Where my tumor was located in my liver, it didn't make any difference whether or not I did chemo or RFA before surgery.  Either way, the entire right lobe of my liver would be removed.  The treatment he is receiving may also depend on where the tumor is in his colon.I signed up for a stage II clinical trial, so I had my colon resected on 8-13-04, my liver had to be resected exactly four weeks after the first surgery on 9-13-04 and I have not had evidence of disease since.  I have been off of chemo or any treatment since June of '05.If they haven't already, it never hurts to get another opinion.  Emory is a great hospital and all of their records should be computerized.  It shouldn't be a problem for them to send his record to Mayo, the U of MN, MD Anderson or CTCA for another opinion.  The doctors in my state originally gave me no hope, said I could die at any minute, but that with treatment I could live for 18 months.  I am forever thankful that I chose to get many opinions and then chose the U of MN for my treatment.     I just wish that my nephew had asked more questions, demanded more of his doctor and not just trusted him so much.  He has been in treatment a year, and only chemo.  You had your colon and liver resections in less time than that!  During this year, the cancer is spreading.  His doctor has not even talked about treatment to the colon.  I sometimes wonder if it is due to the fact that his insurance is running out in a few months.  He had cobra back in June of last year and it is for 18 months.  His job terminated him when he applied for disability (he had been there for 6 months and they had a stipulation in their insurance that denies responsibility for an employee of less than a year's employment).  that is another reason he needs to have surgery soon if he is a candidate.  I think Medicare will take over when he has no insurance, but I don't know if there is a waiting period and how well does Medicare pay for this kind of thing?  Well, there are so many people that seem to have cancer in their families.  It does help to hear advice from someone who is going thru, or has been thru the same thing.  It is especially good to hear positive results.  I am sooo glad that you are  doing so well.  Thanks for the encouragement and good advice.  gran 4    gran4 Fri, 27 Jun 2008 00:00:00 GMT