Mayo Clinic Protocol may achieve 80% Cure Rate for Kaltskin tumors

Thanks Tess. I am blessed.

My offer stands for anyone who would like to talk, and for anyone who knows somebody who needs to talk.

I’m a good listener too! LOL

Wednesday, August 5, 2009.

Anybody who would like to talk about CC and liver transplants, or whatever, or to just talk with a survivor, I’m still here.

I’ve received around 20 calls and e-mails the last 2 months and I’m ready for more.

Call Raye at 1-269-598-1861, or in Canada at 1-519-351-4406, or e-mail me at raye.field@yahoo.com.

I’m here to help and listen.

Raye

hi everyone,
was at the oncologist office for a follow up visit last night and he said there was a new form of radiation therapy called PROTON THERAPY thats being offered at some hospitals across the U.S. Has anyone ever heard of it? He said i should reseach it, which i will do . Just thought i would post this in case you would like to reseach it for yourself, will keep you posted ……ron

Great to hear from you Raye! To other readers…. Raye hooked us up with contacts at Mayo to get second opinions on Dad. Raye’s a fighter, a wealth of info, and a pleasure to correspond with! Thanks for that Raye! We hope you will share more details of your experiences.

Best to you,
Tess

I thought I’d bump myself on the thread again and let any party interested in information or listening to my experience regarding my liver transplant for CC.

I’m available by e-mail at raye.field@yahoo.com and by phone at 269-598-1861, or my home phone in Ontario at 519-351-4406. Please feel free to call me or leave a message and I’ll get back to you ASAP.

There’s a wealth of information here at this site and in talking with others one on one.

Raye

falkol2002,

Since you have no symptoms I was just curious how your diagnosis came about.

Patty

falkol202,

I am so sorry about your illness, it is a horrible disease and my heart and prayers are with you. I live in Connecticut, and my sister who is the one with stage 4 Cholio ( she livers in georgia)went to may 2 weeks ago, we met with An oncologist and then Doctor Lombardo at mayo. In my sisters case, her cancer had grown since being diagnosed weeks earlier and they were not sure that at this time there would be enough healthy liver to leave so they want her to go through a few rounds of chemo first. They did say that if they thought whe was a candidate, they would first take a look laproscopically before opening to make sure there was no spread, that included the lymph nodes. They said they would rule our operating if the nodes were involved. I have read differently though on other sites with other doctors. UPMC has an agressive program, new york presb, and barnes jewish hospital. My view is you gotta keep hope, keep looking, it only takes one doctor to say yes.

I am not sure if this is of any help or interest, but there is a clinical trial that just started at Yale- here is the info…
found this clinical trial and I thought it might be of interest, happy to look further if it looks like it might be useful .
http://www.novogen.com/news/news0501.cfm?mainsection=05&subsection=01&newsid=309

Came across this and thought some might be interested

Jan 08, 2009 (M2 EQUITYBITES via COMTEX) — MSHL | Quote | Chart | News | PowerRating — Marshall Edwards Inc (NasdaqGM:MSHL), a specialist oncology company focused on the clinical development of novel anti-cancer therapeutics, said on 7 January that the company has received Investigative New Drug (IND) approval from the United States Food and Drug Administration (FDA) to undertake clinical studies with triphendiol as a chemosensitising agent in combination with gemcitabine.

The company stated that the approval will allow a Phase Ib study of triphendiol in combination with gemcitabine in patients with unresectable, locally advanced or metastatic pancreatic and bile duct cancers. A Triphendiol (NV-196) is an investigational drug, currently being developed as an orally-delivered chemosensitising agent, intended for use in conjunction with standard chemotoxic anti-cancer drugs for the treatment of late stage pancreatic cancer, cholangiocarcinoma and melanoma.

Dr. Wasif Saif
Yale University School of Medicine
Section of Medical Oncology
333 Cedar Street, FMP 116
New Haven, CT 06520
United States of America
Bus: +1 (203) 737-1569
Bus Fax: +1 (203) 737-2617

Triphendiol Safety Data Clears the Way for Compound to Be Studied Further in the Treatment of Pancreatic Cancer
AACR Abstract # 5101; Poster Presentation, 4/22, 8 am – Noon

NEW CANAAN, CT – Marshall Edwards, Inc. (NASDAQ: MSHL). An abstract titled “Pre-clinical Toxicology of Triphendiol (NV-196)” will be presented at the Annual Meeting of the American Association for Cancer Research, April 18-22 in Denver, showing that triphendiol has an acceptable toxicity profile in animals. To view the abstract online, click here.
Triphendiol was granted orphan drug status by the U.S. Food and Drug Administration for pancreatic cancer and cholangiocarcinoma in January 2008, and for treatment of stage IIb-IV malignant melanoma in February 2008. In January of 2009, triphendiol was granted an Investigative New Drug (IND) approval by the United States Food and Drug Administration to undertake clinical studies with triphendiol as a chemosensitizing agent in combination with gemcitabine.
The abstract, to be presented by Dr. Wasif Saif, Associate Professor and Co-Director, Yale Cancer Center Gastrointestinal Cancers Program, Yale University School of Medicine, summarizes data from a number of preclinical studies performed in order to obtain data to support the IND filing. In in vitro studies, triphendiol was non-mutagenic in the bacterial reverse mutation assay (Ames test) and non-clastogenic in the mouse erythrocyte micronucleus assay. Studies in animals indicated not only acceptable pharmacokinetics, but also no accumulation of triphendiol when administered to animals in repeated doses. Also there were no toxicologically important changes in clinical signs, body weights, hematology, coagulation time, serum chemistry, urinalysis, gross observations, organ weights or histologic findings for any study animal. There were no significant changes to heart rate and the Q-T segment interval indicating a lack of cardiovascular toxicity.

Best of luck to you

I happen to work in the medical sector in Europe. Looking at several messages about the treatment of cholangiocarcinoma over here I thought that it might be of interest to let you know about the local situation. When diagnosed with a Type III or IV non resectable cholangiocarcinoma, you might be able to get a new treatment which is now currently available in more than 100 European hospitals. The name of the treatment : photodynamic therapy. This treatment is usually done after stent placement (the stent can be metallic but preferably plastic) and after improvement of bilirubin level, the PDT procedure can eventually take place. A photosensitizer (a light sensitive drug) will be injected and 48h after injection, using a laser light source and a special light diffuser, during an ERCP procedure (or transhepatic), light illumination of tumour will take place during several minutes. The major benefits of this treatment are recognized as promising and are typically a survival advantage and an important improvement of quality of life. This treatment can take place again when plastic stent replacement will be necessary and patients have often received PDT treatment three or four times. As patient survival is the most definitive measure of the benefit of photodynamic therapy for Type III & IV cholangiocarcinoma, photodynamic therapy seems to be a very promising solution. A multicenter randomized study is actually taking place in Great-Britain but Germany has stopped the same study for ethical reasons thinking that not offering the treatment to patients was non ethical. This treatment is also available in France, Switzerland, Danemark, Greece.