CancerCompass message board discussion started by TnFishersWife on 5/15/2008 http://www.cancercompass.com/message-board/message/all,24082,0.htm Wed, 08 Oct 2008 00:00:00 GMT Wed, 08 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I received a notice from Cancer Compass about this drug. Please look up the company that has done the research/developement on it - Marshall Edwards Inc. They were given 16.8 million to research and develope a chemo drug for bile duct and pancreatic cancers. Triphendiol causes tumor cell death and slows growth. It also sensitizes tumors to chemo treatment.The University of Alabama @ Birmingham lead by Professor Ewan Tytler has conducted the research, along with Dr. Xiaohong and Professor J. Anthony ThompsonI'm so broken hearted over this. I looked it up on the internet and found a press released dated 1/22/08 - 8 days after my husband, my Love died from bile duct cancer. I can't help but think that this research was going on while my husband was alive and maybe it could have helped him. We would have tried anything! I even asked if anyone knew a good witch doctor?? We were willing to travel to the ends of the earth for help. We had reached out to the Mayo Clinic, Cancer Centers of America, MD Anderson and our doctors for any trials for bile duct cancer. They all told us there weren't any at this time. And now I find out there was research going on only 200 miles away. I cried and screamed as I read the reports and the success they are having with this drug. So I had to share with ya'll. I hope that this information will help you in your quest for a cure or for more time with your loved ones. Unfortunately, it came too late for Jim and I.Never, never give up hope. Without hope you have nothing!I miss my Love more each day.The pain and loneliness is beyond description.I hope this information helps. Because that's what Jim would have wanted. He was always more concerned about his fellow man verse himself.Make the best of the life you have been given. Play the cards you've been dealt - even if it means you have to bluff to win all the chips! Jim was a very good poker player. He and "the Poker Boys" have been playing every Thursday night for 20+ years. Unfortunately, we were dealth a very bad hand and all the bluffing in the world didn't help us win this one.TnFishersLovingWife - "I Love My Baby"Jim T. II      3/26/62 - 1/14/08 in your honor, memory and in Love - I miss you Pookie! TnFishersWife Thu, 15 May 2008 00:00:00 GMT What a wonderful woman you are, to post this message. My heart cries with you for the loss of your husband. I can understand your grieve, that this drug didnot come in time. I remember my mother, dying at age 52 on angina pectoris. One year later, hospitals introduced dottering. It could have saved her.You may have seen my name on this forum before. My husband Peter has bile duct cancer, diagnosed in 2007. Surgery was tried, but broken off. The liver was too badly infected. Against the prediction that he had another 2-3 months to live, he is still with me. Having the occasional high fever attacks, but otherwise doing extremely well. Works and sports again.For us his Klatskin timebomb keeps ticking and you will understand that I noted the name of the new drug and with our next visit to the specialist, we will ask for it.May be you were able to prevend another death? I will absolutely let you know! If not, we are enjoying this extra lifetime that is given to him. And we will cherish this little hope you gave us as an extra present.Peter and I are thinking of you, trying to send you a mental comfort. Thanking you for your message, wishing you strength and love,Iris (the Netherlands)  Flower1 Fri, 16 May 2008 00:00:00 GMT Hello, I am so sorry to hear of your loss. I am a week into finding out my love, my partner, has bile duct cancer at 32. He is going in for the whipple surgery. Did your husband have that or what is too big to remove? I was more and more frustrated as I read your story about the trial meds for this. I can't believe that there was research happening so close to you and no one informed you. I'm very sorry. He is going in for the surgery on Tuesday. I hate this limbo period. They put in the stent and sent him home to recover before the big surgery. What can I expect? What is the likelyhood that he will make it? I am terrified!Sincerely yours,Darren in San Diego DarrenS Thu, 22 May 2008 00:00:00 GMT Darren,Please don't give up hope. Hope was the only thing that kept us going through the dark days. I am heart broken over your Love's cancer dx. A year ago on 5/23rd was when Jim was scheduled to have surgery, however his cancer had spread to the lining of his body cavity and they could not proceed. This came as a shock to us. All the test that had been run before were all good - lymph nodes weren't positive for cancer, the PET scan showed the cancer concentrated only in one area with no spreading. But once the drs went in; is when they saw it had spread. Jim was dx 3/8/07 and had lost a lot of weight before his surgery. I was scared that he was too weak to even survive it. I feared that he might die on the operating table. My Baby could not eat - the smell of food would make him sick. I tried any & everything to get him to eat. We would juice fruits & veggies, try Ensure or Boost, but he would go days without eating because he just couldn't force himself to do it. I felt so helpless as I watched a very strong, well built man waste away to nothing. Jim weighted about 175 - 180 lbs in March '07 and when he died in Jan. '08 he might have weighted 90 lbs - if that much.My advice to you and your Love is to ask questions and search the internet for answers too. If you don't understand what the doctors are telling ya'll keep asking until you do. Take a tape record with you to all appointments so you can listen to all the information again once you are home. Buy a notebook, keep it with you at all times - write down questions and concerns, so when you see the dr you don't forget to ask about them. Ask about best and worse case...what to expect. I hope the drs will be honest with ya'll. Jim's dr was still telling us at the end of Oct '07 that the tumor had not grown and the chemo (Gemzar & 5 FU) was working. But in my heart I knew something was wrong. Also, tell your Love to ask the questions and to be very honest with the drs. I found that when I would tell the dr about problems Jim was having they would not believe me until they heard it from him. They looked at me as an over caring/concerned wife. There were times when Jim wouldn't ask the dr questions or for further explanation....he would wait to ask me when we were alone. I'm a cancer surviver - colon cancer. It was so hard to answer his questions, but I knew he had to know the truth about his disease. Ask the dr for the written reports on all procedures and test at the time they are preformed. We requested a copy of Jim's medical records in Nov, but did not receive them until after his death. As I sat and read each report my heart cried out - how could they keep the truth from us. After the failed surgery attempt, Jim developed an abcess. One dr said it was just air and fluid left over from the laperscopy (sp), an other dr said it was a pocket of infection. The CT scan report confirmed the second dr's thoughts. It clearly stated that too much time had past for this pocket to be air & fluid from the surgery. Unfortunately the first dr won the argument. So the infection grew and when it was investigated again, it was too late. We had to stop the chemo treatments and that's when his health really started to decline. We finally got fed up with the drs at the end of Oct - we spent almost the entire month of Oct in the hospital. The final straw was when Jim couldn't keep food or water down. We asked them to run more test. I even told them what test to run - having been there done that with my cancer. The drs told us,"you don't demand test, you ask and we're not running anymore test! It's just the cancer causing his problems.....but remember the tumor has not grown!!!" After that I asked Jim if he would like to go back to my drs - the one's that originally dx him. He said he would love to go back to them. The other drs we were seeing were "specialist" in his type of cancer. So , the first weekend in Nov. we checked into our community hospital. After they ran the test that the other drs refused to, is when we found out that the cancer had spread. It had cut off his stomach to his intestine, which is why he kept vomiting everytime he tried to eat or drink. I asked my oncologist why the other drs kept telling us that the tumor had not grown and that as soon as he finished the antibiotics for the infection we would start chemo again???? My Oncologist just hung his head and said I don't know why they would tell ya'll that. We went home with Hospice at that time.Darren, if there is any thing I can do to help, please let me know. I'll share all the mistakes & successes we made so hopefully you can learn from them. I've heard that the whipple surgery is very painful and there's an extended hospital stay afterwards with a days spent in ICU. Watch for infection! Jim would run a fever off and on, but his blood would not test positive for an infection. He would get riggers - uncontrolable shaking with chills, but no fever. He would not remember these events afterwards. As silly as it sounds I taught Jim Lamaze breathing for child birth. When the pain would be too much for him to bare or he would have riggers is when I'd get him to use Lamaze. The first time I convienced him to do it he thought I was a nut case....when it was over, he looked at me, laughed & said that really worked! I said I know, after having two kids naturally with only Lamaze breathing!Worse case....buy a second tape recorder and a journal. I had saved most of the voicemails Jim had left for me. After his death I saved them on a recorder so I could have them forever. I started a journal when Jim & I met, only three years ago. I wish I had kept up with it. It was sad when I picked it up again after his cancer dx and read my last entry...I wrote it had been almost a year since my entry before & that I needed to write more often, but I was too busy enjoying and living life to the fullest with Jim. Now I go back and try to remember special dates and times we had together. I wish I had recorded them when they were happening, so it would have been written with a happy vs a heavy heart. I'm not saying that you and your Love's battle will be the same as ours. I just know the regrets I have and how wish life could have been different for us.One more thing..... as a cancer surviver, the most important thing is that we want to be treated like normal people. I tried to get that across to our friends and family, but so many of them would sit and look at Jim as if he was taking his last breath (and this was from the very beginning) - it would drive him crazy, to the point that he did not enjoy visits from the ones that treated him differently.I apologize for the long message, but there is just so much to share.Take care of yourself and your Love. Love long and often, hold hands, hug, kiss, and never miss the chance to say I Love You Now and Forever! Remember that ya'll chose each other to love and no one is as important as the two of you.TnFishersLovingWife - Always and Forever. TnFishersWife Sat, 24 May 2008 00:00:00 GMT  On 5/15/2008 TnFishersWife wrote:I received a notice from Cancer Compass about this drug. Please look up the company that has done the research/developement on it - Marshall Edwards Inc. They were given 16.8 million to research and develope a chemo drug for bile duct and pancreatic cancers. Triphendiol causes tumor cell death and slows growth. It also sensitizes tumors to chemo treatment.The University of Alabama @ Birmingham lead by Professor Ewan Tytler has conducted the research, along with Dr. Xiaohong and Professor J. Anthony ThompsonI'm so broken hearted over this. I looked it up on the internet and found a press released dated 1/22/08 - 8 days after my husband, my Love died from bile duct cancer. I can't help but think that this research was going on while my husband was alive and maybe it could have helped him. We would have tried anything! I even asked if anyone knew a good witch doctor?? We were willing to travel to the ends of the earth for help. We had reached out to the Mayo Clinic, Cancer Centers of America, MD Anderson and our doctors for any trials for bile duct cancer. They all told us there weren't any at this time. And now I find out there was research going on only 200 miles away. I cried and screamed as I read the reports and the success they are having with this drug. So I had to share with ya'll. I hope that this information will help you in your quest for a cure or for more time with your loved ones. Unfortunately, it came too late for Jim and I.Never, never give up hope. Without hope you have nothing!I miss my Love more each day.The pain and loneliness is beyond description.I hope this information helps. Because that's what Jim would have wanted. He was always more concerned about his fellow man verse himself.Make the best of the life you have been given. Play the cards you've been dealt - even if it means you have to bluff to win all the chips! Jim was a very good poker player. He and "the Poker Boys" have been playing every Thursday night for 20+ years. Unfortunately, we were dealth a very bad hand and all the bluffing in the world didn't help us win this one.TnFishersLovingWife - "I Love My Baby"Jim T. II      3/26/62 - 1/14/08 in your honor, memory and in Love - I miss you Pookie!My wife also has refractory biliary cancer.  We have hit her with everything including Dr. Howard Brucker's GFLIP protocol + a few more drugs, which might have slowed it some.  I contacted Marshall Edwards and they would not make it available on compassionate use.Our next shot is Sir-spheres if we can get approval.  Does anyone have experience with them with or without chemo. Thanks Murray Octopus79 Mon, 30 Jun 2008 00:00:00 GMT