CancerCompass message board discussion started by Cptmac on 5/2/2008 http://www.cancercompass.com/message-board/message/all,23679,0.htm Sun, 12 Oct 2008 00:00:00 GMT Sun, 12 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Thanks for those who asked.  For those that don't know, I was orignially dx with Stage IV cc with mets to the liver in July of '04.  I was given 18 months to live tops, but said I could die at any moment.I got another opinion, signed up for a clinical trial and have been NED since September of '04.Yea.  Cptmac Fri, 02 May 2008 00:00:00 GMT Thats great news!!  Do you know what your trial drug was?? Thanks   Jofood Fri, 02 May 2008 00:00:00 GMT Hi CPT Macl live in Sydney Australia and my cousin in Feb07 was diagnosed with colon cancer.  Her cancer was said to be rare as it was in her upper (small) intestine.  She had surgery and it was removed.  They were 100% confident that they had got it all and recommended chemo as a precaution only.  She did this for 9 months taking it to Nov07.  Throughout that time all her blood counts were normal.  Her colonoscopy in Feb gave her the all clear and her blood counts were still normal.  In March08 my cousin was diagnosed with metastasized liver cancer (tumour 8cm by 5cm) and three tumours in her abdomen, we are not sure of the size.  She also has what was referred to as a “dead piece of cancer” on the lung, god knows what “dead cancer” is.  Today she has commenced chemo again, this will be at home for 8 weeks, every second week on a drip for 46hours.  Can you advise what your treatment was and can we get it in Australia?  You may not know the answer to the later however at least if we know what it is we can make enquiries.  I noted someone asked what your trial drug was however I cannot see any additional entries. I beg your response.  What does NED mean?  You say you “signed up for a clinical trial and have been NED since September of '04”.  What occurred from July to September?Regards reefton Tue, 13 May 2008 00:00:00 GMT Hi,Yes, I do talk cryptically, but I've been on here a while and believe it or not, sometimes people will chastise you for no reason.  But I do know that when you are newly diagnosed, you don't know the lingo.  And, I type fast and love talking about what happened to me, so feel free to ask any questions..Thank you for letting me know you live in another country.  It can make a difference.  So, I was diagnosed with colon cancer on July 22, 2004.  I had no symptoms of colon cancer and had a colonoscopy as a fluke.  So I surprised everyone with my news.  The original doctors in my state gave me no hope.  I was going to go to the Mayo Clinic, a very good hospital in this country.  It is in Rochester, Minnesota.  People from other countries go there.  But I found some great doctors at the University of Minnesota in Minneapolis, Minnesota.  They told me that they could save my life and that I had options.  So, I decided on a Stage II clinical trial.  The trial involved having Irinotecan used as systemic therapy and putting in a hepatic arterial infusion pump inside my body next to my appendix with cathaters that would deliver chemo directly to my liver.  The Mayo had a similar trial using Oxilaplatin.Here is a web site that tells you more about my pump.  It is from Medtronic who makes my pump. http://wwwp.medtronic.com/Newsroom/LinkedItemDetails.do?item So, on August 13th, 2004 I had my colon surgery.  On September 13th, 2004 I had my liver surgery and the HAI pump put in.  It was at this time, that I was NED they could find no evidence of disease.  My CEA had dropped back to almost normal, and went to normal as soon as I started chemo.  Since my blood was good and I was in good health, I was able to go on this trial.  I did well throughout, with the exception of finding out that Raglan gave me medically induced Parkinsons Disease.  I had to wait for that to clear out of system before I could continue with the chemo.  In this country, we have chemo for 6 months.  It used to be 12, but they discovered that 6 months would be just as good.  So I had chemo for 6 months and finished in June of '05.  Aside from getting my CT's every six months now, I am not on any medication.  I don't know if you can get this in Australia, since it is a trial.  Even in America, you have to go to the hospital that is offering the trial.  The U of Minnesota ran out of funding for the trial, not to mention that not a lot of patients sign up for trials, and stopped doing it.  However, I do know that Memorial Sloan Kettering in New York is still doing the trial.   I did chose to use Irinotecan over Oxilaplatin, because I didn't like the neuropathy (numbness of fingers, feeling of closing of the throat) that came with it.  You will get hair loss with Irinotecan.  But I knew I could deal with the other side effects.  I know that a lot of other people love Avastin.  It is something I did not use. Let me know if you have any more questions.  I'm glad to help.  Cptmac Tue, 13 May 2008 00:00:00 GMT So,  you'll see my message above, but I wasn't on any new drugs.  The trial involved using these two therapies together for the first time.  The pump was good because it delivered chemo directly to my liver.  With colon cancer, it is most likely that that is where the cancer will travel to.  However, when they used the pump alone, it didn't carry any chemo to the rest of the body.So, the Irinotecan worked to deliver chemo to the rest of my body.  This worked well for me.  Here is a note from Sloan Kettering about the trialhttp://www.mskcc.org/mskcc/html/63980.cfm  Here are the findings.Researchers found that patients receiving HAI lived longer than those receiving systemic chemotherapy, with a median survival of 24 versus 20 months. In addition, patients receiving HAI had better response rates (47 percent versus 24 percent) and longer time to disease progression in the liver (9.8 months versus 7.3 months).Patients receiving HAI did not experience the usual side effects associated with systemic therapy such as diarrhea, decreased white blood cell counts, and hair loss. However, because patients on the HAI regimen experienced mild toxicity to the liver, their liver function was monitored closely throughout the duration of treatment to prevent the toxicity from becoming more severe.The research began in 1996, before chemotherapy drugs such as irinotecan and oxaliplatin were available, so both sets of patients received the standard drugs at the time, fluorouracil and leucovorin, and had access to the newer drugs as they became available. According to Dr. Kemeny, studies are currently underway at MSKCC using HAI therapy in combination with newer drugs, and response rates appear to be even higher. Furthermore, the addition of HAI therapy is also being investigated in patients with primary liver cancer. Let me know if you have any more questions.  I just moved into a new house (I helped design it and everything) and spoke at a dinner about my cancer and had two weddings to go to, all in a months time frame, so I've been a bit swamped and apologize for not answering sooner.      Cptmac Tue, 13 May 2008 00:00:00 GMT what great news!!!! i am sure you give great hope to a lot of people out there. and by letting people know how important CLINICAL TRIALS are and where they are being done (at major research hospitals) is all important info. take care you are truly an inspiration. Fancy Thu, 15 May 2008 00:00:00 GMT