CancerCompass message board discussion started by Wilco900 on 8/11/2006 http://www.cancercompass.com/message-board/message/all,6398,0.htm Tue, 07 Oct 2008 00:00:00 GMT Tue, 07 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 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 Wilco900 Fri, 11 Aug 2006 00:00:00 GMT 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 Jeffger Fri, 11 Aug 2006 00:00:00 GMT 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 Wilco900 Sat, 12 Aug 2006 00:00:00 GMT 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. Topgun Sun, 13 Aug 2006 00:00:00 GMT 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 Wilco900 Mon, 14 Aug 2006 00:00:00 GMT 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. Topgun Mon, 14 Aug 2006 00:00:00 GMT I replied to the wrong message. Topgun Mon, 14 Aug 2006 00:00:00 GMT 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. Topgun Mon, 14 Aug 2006 00:00:00 GMT 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. Topgun Wed, 16 Aug 2006 00:00:00 GMT 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 Momoftwins Sun, 27 Aug 2006 00:00:00 GMT Heidi, Stay positive!My dad had great success in a clinical trial using Gemcitabine and Carboplatin.He was being treated at Washington University Siteman Cancer Center with Dr. Benjamin Tan.His side effects were minimal.God's blessings to you. Kate Kate4 Sun, 27 Aug 2006 00:00:00 GMT thanks for ur thoughts god bless ur family since i last wrote my wife moon has completed her radiation 25 treatments and has had 2 chemo treatments very lite ones to enhance radiation we also have her taking noni extract goji berry and pomogratite evtract along with rene cassic herbal tea which people say the love with great results still kinda early to see anychanges but what we have seen has been very positive she is gaining weight more energy and happier aloha joe and keep in touch Wilco900 Thu, 31 Aug 2006 00:00:00 GMT Aloha Joe! I hope your wife is feeling better each day! She sounds like a very strong woman. I am also taking essiac! (Along with TONS of other supplements!) I have decided not to do chemo as I was told it WILL NOT work on my tumor... I am now looking into a liver transplant. I hope to travel to the Mayo Clinic very soon! Take Care and keep me posted on her progress! :) Heidi Momoftwins Mon, 04 Sep 2006 00:00:00 GMT Hi Heidi, Thank you for your message of hope. My father (71) was diagnosed in January 2006. The first hospital didn't want to deal with it so we got him transferred out. The second medical center tried a resection which was unsuccessful and immediately decided that it was pretty much a lost cause, with the best chance being a clinical trial they were conducting. I was unhappy with this response so I sought out a third set of doctors who gave the same statistics but at least wanted to do whatever they could to make my dad live as long as he can with as little pain as possible. We did 7 weeks of radiation (5/week) concurrently with chemo (I'm ashamed to say I don't know which one). Anyway, we're going back in tomorrow for CT/MRI to see if any changes and as usual, I'm scared of the results. Along with the traditional route, we've been trying Noni and Yunzhi polysaccharide. Can you let me know what alternative treatments you've looked into? Thank you in advance. Heidi, it sounds like you are a very strong person who has a great support unit around you. I wish you and your family the best. Richard Fatherson Wed, 06 Sep 2006 00:00:00 GMT Hi Richard! I hope that your dads visit went well today. Keep the Faith! I found out this past Tuesday that I AM NOT a candidate for a Liver transplant....Very disappointing but we can't dwell on that to long! We must move on to something else now! Radio-embolization.....Sounds pretty scary BUT if it might shrink my tumor enough for surgery or transplant then this is what I must do! As far as my "alternatives".... Essiac Tea, Kombucha Tea, IP-6, Flaxseed Oil & Cottage Cheese, Green Tea, Aloe Vera Gel, wheatgrass, ImmunePower, Calcium, Vit C, Selenium, Milk Thistle Extract,Super Enzymes, Tumeric Extract, Pau d'Arco, Liver Detoxifier and regenerator, Vit B12, Vit E, Alpah Lipoic Acid, Beta Glucon, CoQ10, LOTS of greens Lots of fruit, Organic when possible No Meats, No Sugar, Nothing containing dye, Nothing containing words that end in ....ose (ex. Sucrose) I'm also investigating coffee enemas.....YUK! I will be starting to use Accupuncture, Reiki, Massage Therapy, Meditation) Hope this helps! Heidi :) Momoftwins Thu, 07 Sep 2006 00:00:00 GMT heidi, i'm sorry to hear about the transplant news. but you're absolutely right, have to move on. "radioembolization" - i've never heard of it. before this week, i thought that i was being pretty pro-active in trying to talk to doctors and helping my dad, but after seeing this site and especially the blogs (i spent all night reading the mccrea family blog), i feel bad that there's so much i don't know. at the same time, though, it makes me feel better that there are so many positive, caring families out there. it's like we're all in this together. we meet next friday with the oncologist after he reviews the CT and MRI from today. we've never had a PET done. have you? richard Fatherson Thu, 07 Sep 2006 00:00:00 GMT i must say for a while i was very scared about what was gonna happen next but my wife has done a whole 360 with a special diet of no sugers except fruit and goji extract noni extract (not juice ) and pomograntine extract along with rene cassisc herbal tea she has been doing great and dont forget the tlc from everyone and support it is amazing what the power of love can do and positive mental attitude hedi tell me more of ur anti oxident supplement and what u belive has done the best for u i read alot about tumeric and flax seed oil any other good suggests food wisethanks and aloha from kailua oahu Wilco900 Fri, 08 Sep 2006 00:00:00 GMT Hi Richard! I have had a PET Scan. It's no big deal! They will inject your dad with some sort of radioacitve dye, have him sit in a chair for about 45 minutes then take him into the machine. Looks just like a CT machine. The only advice I could give is to have your dad stay motionless during his 45 minute sit in the chair. Arms relaxed to the side, no chewing gum no crossed legs, etc...... The reason I tell you this is because you don't want the dye to "pool" in any area. Tell him to just be as relaxed as possible. (Meditate for that time!!!) The "radio-embolization" has only been done on 25 people in this country so far.....I guess I will be #26! A little scary but.... Take Care and good luck at your next appointment! Heidi Momoftwins Fri, 08 Sep 2006 00:00:00 GMT Hi Joe! My best friend is from Hawaii (Ewa Beach) and her auntie had sent up some Xango. I also have tried Noni. Both of those were juice not extract. I would prefer extract! I also take essiac tea, khombucha tea, aloe, flaxseed oil and cottage cheese, IP-6 and tons of supplements. (see my list under "YOUR DAD". I listed most of thme there!) I'm so happy to hear that Moon is feeling much better! You're right about family and love. Without either, I don't know how people would get through hard times in thier lives! Keep the faith! Heidi Momoftwins Fri, 08 Sep 2006 00:00:00 GMT well my wife just got her cat scan after the radiation and chemo and her bile is frely moving through her bile duct tubes no more bags on her side draining the bile very good great but noe the cancer in her liver has grown not good any suggests or idea of whats happening thanks joe Wilco900 Fri, 29 Sep 2006 00:00:00 GMT I was encouraged to hear of Davanat in your message. We discussed it with my sister's doctor and he is looking into it. She was diagnosed with cholangio in April 2005. Gemzar was working well for the past year, but she is no longer responding. Would you please let me know what your experiende with Davanat was. Also, what drug does Glaxo have? I would appreciate any more information you have. thanks Sisterof Sat, 14 Oct 2006 00:00:00 GMT I don't want to get too technical with you but DAVANAT works by targetting the chemo. It encapsulates 5FU. Gembetazine is just a watered down version of 5FU. 5FU is the most powerful chemo drug out there. The problem is the side effects. Chemo is poison and if all the poison goes where it is suppossed to then you won't have any side effects. That is how DAVANAT works. It latches on to the Galectin-1 receptor found on cancer cells. Cancer overly expresses this receptor. its still a numbers game because the galecting-1 is also found in good cells. The other thing is that the encapsulation of 5FU keeps it in blood stream 5 -10 times longer. I don't know if you know how huge of an advance that is. Right now the half life of 5FU is 15 min imagine increasing that to 1.5 hours. That give the DAVANAT more time to find the Galectin-1 cancer cell. Therefore you don't have to use as much chemo to acheive the same or better results. Regarding the Glaxo drug SB715992 YOU HAVE TO HAVE THE MUC-1 receptor for this to work. This drug binds to the abberant MUC-1 receptor and turns a cancerous cell normal by not allowing the growth factor in. The stuff I talk about is well over an oncologists head. This stuff I talk about is cutting edge and you will not hear about it for 2-3 years. The question is - do you have the time to wait. Do a google search on Cynthia Bamdad. She is the inventor of this technology. The Glaxo drug WILL eventually be modified into a cure for Breast cancer. The DAVANAT drug will eventually be a first line treatment if the company can get its corporate governance together. --- Message edited by CancerCompass staff: for personal protection, phone number removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----. Topgun Sat, 14 Oct 2006 00:00:00 GMT I know what you are going through. My mother was diagnosed in May, a week after my 25th B-Day on mother's day weekend! She is only 49 and she's an awsome person and I think that makes it even harder to deal with. She had shunts put in first and then biliary drains, which seemed to slip down or get clogged up ever few days. When the drains weren't clogged they were moving to freely so she was dehydrated and in the hospital for that. She had radiation and chemo at the same time, following the mayo clinic protical which has been a sucess for some people. After all the scans following her first round they decided her cancer was not responding at all. They took her off the transplant list and pretty much just said sorry! She started a second round of chemo about 4 weeks ago so I guess we will keep our fingers crossed and see what's next. I will tell you though, my mother has began taking mannatech. It is just a food supplement. It's a little expensive, but it has worked with people we know, and who can put a price on life? They have a website you can take a look. It's a local company to us here in texas and my family has been to the meetings and spoken to people who have used it and had great success. We first heard about it sitting in the hospital waiting room while mother was having a CAT scan. There was a lady next to us who's son was taking it. She gave us her number and her sons number he had liver cancer as well as lung and throat cancer. They gave him 9 months to live, he's been taking mannatech for 10 months now and is cancer FREE! It's great for all kinds of things not just cancer, pretty much my whole family is on it now. Mom is set to have another scan in two weeks. I'll keep you posted. Alibird Sun, 15 Oct 2006 00:00:00 GMT You certainly know alot of technical information on these therapies! Have you used Davanat yourself, or is someone you know on it? I was wondering what your personal experience with it was. thanks Sisterof Mon, 16 Oct 2006 00:00:00 GMT I haven't used it. I just have been following the science for a number of years. In the next 6 months to year we are going to undergo a dramatic leap in understanding how cancer works. I've read certain reports and cancer is caused by a receptor being cleaved off of your cells. Speculation says it is the micro organisms in your body that cause the cleaving of a receptor that result in a cancerous cell. if you find a drug that binds with this abberant receptor you will prevent the growth factors coursing through our body from triggering the cell to be cancerous. All these theories that this causes cancer or that causes cancer are ridiculous. All these outside factors like dioxin for example foster an environment for micro organisms to grow in your body which cause the cancer. Now once you have cancer you ever wonder why stuff like Noni juice works. The complex carbohydrates in the juice bond to these abberant receptors. When this happens the cell dies normally and doesn't replicate. I'm not telling you to buy Noni juice the the theory behind how this works. Davanat is just a sugar made from bean leaves. Used alone it has no therapeutic effect BUT there was a measurable effect. What I mean is that DAVANAT has an affinity for the Galectin-1 receptor found on 75% of all solid tumors. If it binds to the Galectin-1 then that means that a blood cell won't bind to it and help the cancer spread. So it can slow the progression. No more studies were done on it b/c that data with DAVANAT and 5FU was so much greater. I hope my information helps you. The main thing is fight this disease with everything you got. The Glaxo drug might work but the DAVANAT is a sure thing. The only way to get DAVANAT is calling the company and asking for compassionate use. It has been granted twice before. One person was a cholangio patient who worked at Pfizer. Someone very high up in the organization. Hint hint stomp stomp. There are no side effects of DAVANAT so you have nothing to lose. it is combined with a 30year old chemo drug that basically kills any type of cancer. You could say DAVANAT took the edge off 5fU but that isn't even close. it eliminated the side effects. This is the best bet. You can try Gemzar, Xeloda, etc but they have no targetting technology. They are also modified forms of 5FU designed to be less toxic. As a result they aren't as good as killing cancer cells. 5FU is very toxic but is rendered inert in the carbosome shell. You should really go to the website and look at the videos. A lot of your questions on how and why this works will be answered. Topgun Mon, 16 Oct 2006 00:00:00 GMT well im sorry to say that my wife moon has lost her battle with cancer at 3:30 on november 12 she passed away it was the saddest thing in my life for me and my kids to have to see she died at home with her kids by her side taking her last breathshe fought all the way till the end gasping her last breath i thought it was hard dealng with things when she was alive this is the hard part for 4 mounths i was with her day and nigh giving her meds and hookin up her ivs showering her comforting her talking with her doing things with her that i wish no matter how hard i could still do with her i would give anything in this world to have her back but that wont happen we did everything for her noni extract goji extract and goji berrry flore essence tea strict fruit diet with protein supplements radiation chemo and all was good till she got that damn gemzar 9 days after that she got flue like symptoms and had to have a blood tranfusion and after that day everything went down hill not only did she have to heal her body from the chemo but now her lungs from the gemzar doctors said it was a freak side effect i say what ever now im out a wife and my kids are out a mother 3 boys maybe next time then can warn someone of the side effects before aloha and good luck to the rest of u Wilco900 Fri, 17 Nov 2006 00:00:00 GMT