My Wife Moon

aloha from hawaii my wife moon was diagniosed with cholangiocarcinoma just about 1 1/2 mths ago my story is a little different because my wife is only 36 yrs old we have 3 boys ages 12 10 and 8 and we where told she has only 6 to 12 mths to live i was told that it was not going to be able to be removed surgically and they would do radiation then chemo and see if they could shrink the tumor my life changed in amatter of mths and im lost on what to do for her my life and boys and wifes are in the hands of docters and nurses at kaiser permenatai am now going to be taking her home and be careing for her on a reguler bases i have to do ivs meds through iv and transport her to radation and take care of the 3 boys work a full time job and be strong her work place has ben reall great midweek and star bulletin newspaper agency has had several fundraisers and very supportive it makes it a lot easier i have looked at anti oxidents to give her to go with ration to help it succed but she cant have them cause she is in the hosiptal and wont allow it only meds the oncology doctor prescribes is allowed its all a bunch of catch 22 just wanted to let people know it just does not single itself out to older people but younger to my wife never smoled social drinker and healty person it does not discrimanate we pray and so does a large group of her freinds and co workers every min of the day for her and sit here and scratch our heads and look up to the great god and cant help but ask u created man kind did u create this too and why to such a special and angelic person who did nothing but help and love and never harm or hate and the only answer i get is god needs angels but why mine aloha from hawaii joe and his 3 sons still praying and hoping for god to give there mom back aloha

Hi Joe, My thoughts and prayers are with you and your wife and the kids. I'm 50 years old and was dx with Cholangiocarcinoma back in 1998. I had half of my liver removed and my gall bladder. They thought it was a done deal and all would be fine. It returned to my liver and both lungs. Had chemo last year and had some shrinkage but started to grow again within a couple months. Currently trying new regimen of chemo and will have CT to see if anything positive is happening the 17th of this month. I was told 6 months a couple of months ago but they can only predict and predictions can change. I do know radiation can really drain the strength and and be painful. My Auntie El just finished radiation treatments but for a different kind of cancer dealing with the throat and neck. You have a tough road still ahead my friend and I wish I could wave a magical wand. My cancer is considered low grade and that is why I have survived this long. Along with a lot of prayers and meditaion to keep calm. Your wife's cancer must be quite advanced for them to go straight toward radiation or did she already have some chemo treatments? I've been told there is no current cure for this type of cancer but new trials are always being done. I've been watching and reading for some time now and have not seen nothing yet. Joesph, Be sure to ask for help and get support for yourself and the children. Emotionally, you and the children need to be able to talk and shed tears when you feel like it. Each person with cancer find their own best pathway to deal with it. Feel free to ask me any questions you want. I will be more than willing to ansewr anything I've experienced on the road I'm travelling. Aloha from Kansas. God Bless You All! Jeff

thanks jeff yes they said her cancer is very aggresive and stage 2 she has had no chemo after hearing of all the bad expericences on here about people who did the chemo and wish they had not im really debateing it unless it is with some clincal med or something getting her to eat and nausea is the hard part is there anything anyone one can tell me about the use of pakalolo with cancer (thats pot in hawaiian) i wonder people sy it makes u hungrey and cures nausea and anything positive about anti oxidents thanks all for ur prays and support aloha from hawaii joe and the boys

Joe
I have to commend you and your strength in not pursuing chemo, BUT ... there is an option and as timing would have it you are in luck. There is a new Phase II clinical trial for DAVANAT that will start in days if not weeks. You need to get your wife in this trial. This is chemo without the side effects. I've posted a lot but very few people really listen. If you research this drug you will find out all it boils down to is chemo (5FU) combined with a sugar called DAVANAT. This sugar wraps around the chemo(poison) and keeps it in the blood stream until it find a cancer cell receptor call the Galectin-1. Sounds simple. Well it is. If all the poison is going where it is supposed to then you won't get any side effects.

The company is called Pro Pharmaceuticals and I just recently had a family member diagnosed and I'm working to get him on the drug. There is no other drug I would let a family member take at this point for a tumor.

If you have any questions e-mail me --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----. I'd be more than happy to talk to you about how the drug work and how cancer is formed. Once you have a basic understanding then you can make an informed decision. By the way, I'm the same age as your wife with only one kid. In my opinion it would be tragic not to take some action. Herbs are good and I will tell you why they work but they won't do much overall. You need a targetted drug.

There is a Glaxo drug that would also work as well, but lets take one issue at a time. If you want me to help you - let me know.

i am very interested in this trial plz give me all then info u have on this i really want to know more anything at this point will help

You have to give the doctors time to diagnose what you have. First they start with blood and urine tests and then they go further into scans. If they say nothing is wrong - request a scan anyhow to be certain. Scans are not the end all either. My moms friend had symptoms similar to yours for months on end then 1.5 years later she found out she had inoperable pancreatic cancer. They did all the scans and found nothing. Take control at the doctors office to get answers. My gut tells me that you are going to be okay. Hand in there and wait for the tests.

I replied to the wrong message.

This site won't let me get you the website or the emial address. Let me see if this works.
--- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----

E-mail me and I will get you some additional information that is just to voluminous to put on the message board.

This is very frustrating how these guys edit messages. Okay there is a govn't website for clinical trials. The name of the website is clinicaltrials.gov. If you type in the drug DAVANAT in the search bar then it will pull up the colon cancer trial. Then you will see the name of the manufacturer. Then do a google search for the company. There is a hypen btw the first and second word of the manufacturer. YOu need to look at the video and then there is information on how to contact them on the web.

Another option is to go to the John Hopkins web and go to their message board where things are not edited like they are here. YOu should find info there.

Hi Joe!

I was diagnosed with Cholangiocarcinoma on
July 14, 2006. Never smoked, did drugs etc...Never had any symtoms of anything being wrong. This was found by a total fluke.
I am only 33 years old. I have 5 1/2 year old twin boys who will be starting kindergarten next week. I know exactly what you all are going through. My tumor is also unable to be removed surgically. My local hospital (UMASS Medical Center) was unable to diagnos my biopsy so they sent my slide to MD Anderson in Houston Texas. I then transfered from UMass to Dana Farber Cancer Institue in Boston because they have seen more cases of this type of cancer. They wanted to start "fresh" so they did another biopsy 2 weeks ago. Same result as the first. They now want me to either do chemoembolization or radiofrequency ablation. Neither sounds good to me. They've given me all the statistics, and the numbers don't sound to promising. My family and I have done some serious research into alternative treatments. There are alot out there. DON'T GIVE UP. THERE IS HOPE. If you're not going to do the chemo or radiation, what do you have to lose? Try something else, that won't make your wife sick. AND may actually work. NOBODY but God can tell you how much longer your wife has left. How do they know? Tell her not to give up, stay strong, and know that she isn't alone! Enjoy each day for what it is. STAY POSITIVE.
Take Care, Heidi