betty-johnson
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Sam had his liver surgery in January 2005 and still complains of pain and discomfort around the incision and particulary on the right side of his liver. He takes Reglan 30 minutes before each mill and that seems to help with the fullness and tight feeling.
It also helps a little with the nausea. You can research his history under the Johnson blog. Good luck.When I was first beginning to study about this disease, I found one of the best articles published by John Hopkins Hospital. The web site is http://www.hopkinsmedicine.org. After going to this site, type gastroenterology in the search block and it will take you to J. H. Gastroenterology & Hepatology Resource Center. Highlight Digester Disease Library and you will see Biliary Tract. Highlight Biliary Tract and it will bring up Cholangiocarcinoma. Hope this helps – it is a very informative article. Good luck.
I just read an interesting article about a new treatment using Atiprimod developed by Callisto Pharcaceuticals, Inc. The Company announced its commitment to initiate a new Phase I/II clinical trial of Atiprimod in carcinoid cancer patients. The article stated that Atiprimod may provide new hope for patients with advanced carcinoid tumors of the liver and GI tract. I have requested information from the company as to the locations where the trials may be conducted.
About like always – very slow and more waiting. They have now decided to pull the liver biopsy from his surgery last January, 2005 to see if the tumor expresses this epidermal growth factor. If it does, they are going to treat him with Camptosar and add either Herceptin or Erbitux. Dr. Posey has a patient from Macon, GA that is taking Herceptin and is really doing well (over 4 years). He even had her on a special television program last week; I guess it was a promotional for UAB – I wish I had known about it. The trial that we anticipated entering was full and it will be a while before we can enroll in it. Right now he is at home with a bug that is going around with about 102 temp. – feels really bad. With all of the lungs mets that he has, I am really worried about pneumonia. Sam is a very goal oriented person and he was trying so hard not to miss any work but he had to give in today. I’ll give him some extra TLC and have him back up in no time. My best to you and your Mom.
Sam’s surgeon was Dr. Selwyn Vickers, his oncologist is Dr. James Posey and Dr. Fiveash is the radiation oncologist. At the very beginning, his radiation oncologist was Dr. Russo but she has left UAB. Believe me, I have wished a thousand times that we had gone to M.D. Anderson at the beginning. However, I really don’t know if things would have turned out any differently. If you will pull up Sam’s blog (johnsonal.blogspot.com), you will see that he had the chemo regimen of Gemzar and Oxaliplatin which is what most of the cancer centers recommend. It just didn’t work on Sam. He has had radiation, Xeloda, Gemzar alone and then Gemzar/Oxaliplatin. The only thing that really seems to slow things down is the radiation. His liver ablation has remained stable and has actually had some shrinkage; its the mets to the lungs that are just out of control – 12 in one lung and 10 in the other and the internal mammary nodule. When he was first diagnosed in September, 2004, there were just two little tiny nodules that showed up on the CT. UAB felt confident that the tumor was confined to the left lobe of the liver but apparently it had already started to spread. Dr. Vickers was in contact with Mayo Clinic after his surgery about a transplant but Dr. Gores at Mayo said it would not do any good. I just have to believe that whatever happens is in God’s plan but I do pray all day and all night for a miracle. I know that it is possible and I just have to believe that this new trial he is entering is it. As Dr. Posey put it, there is just not a chemo out there that has a long track record; I think some work for a while but then become ineffective. We are going to Birmingham tomorrow and I will post the results of the visit on our blog.
Thanks for your respone; this web site is so comforting – makes you feel like you are not alone in this battle.I have not heard of this trial but my husband is scheduled to participate in a trial at UAB, Birmingham, AL involving RX-0201 which blocks the production of Akt, a protein kinase, which plays a key role in cancer progression. We have an appointment Thursday morning and I should know more about the trial then.
I’ll do my best to locate her. I wrote her a letter several months ago thinking I had the correct address but it was returned. I’ll try again the next time we go to UAB
which I hope is soon. I’m sure she would be interested in the cholangiocarcinoma web site also.I read about this patient in the Crossroads magazine which is published by the UAB Comprehensive Cancer Center. You can find this magazine by doing a search in Google. Pull up the Spring/Summer 2005 issue and it is the article entitled “Living with Cancer”, page 29. I thought as much as we go to Kirklin Clinic at UAB I would have run into her in the infusion clinic but not so far. The article stated that she experienced severe stomach pains in January 2002 – my goodness that was four years ago and to my knowledge, she is still doing O.K. That in itself is encouraging.
I don’t know anything else about her nor her latest treatment. I do think she has had some mets to the lungs but just happen to pick up on that in a conversation at UAB.Jules –
There is a patient from Macon, GA that is being treated at UAB/Birmingham and Dr. Posey is giving her Herceptin. He has never mentioned treating Sam with this chemo but apparently it is working for her; she was diagnosed in 2003. I’m not sure if it has to do with whether the cc is intrahepatic or extrahepatic. Sam has intrahepatic and I thought she did too but not 100% sure. I do know that they did give her Oxaliplatin for a while but she had to come off of it due to neuropathy.
Betty
