CancerCompass message board discussion started by Seage on 1/19/2006 http://www.cancercompass.com/message-board/message/all,4133,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi guys, I am 30 years old and have recurrent primary liver cancer with lung mets. Below is my medical history. I don't seem to be repsonding to my latest clinical trial chemo treatment. Anyone with any treatment suggestions (chemo / clinical trials / alternative) please advise. BTW, I am in Malaysia (small southeast asian country) so hope you don't suggest doctors/hospitals but rather the treatment itself, thanks! My cancer history: - hepatitis B carrier from childhood - single HCC tumor found in liver's left lobe in May 2004 - underwent resection at Stanford Hospital in June 2004 - recurrence detected in May 2005 - another tumor in liver AND several more in lungs - underwent Avastin + Xeloda clinical trial in Singapore - After cycle 2, CT shows tumor stopped growing although AFP is still climbing - After cycle 4, CT shows tumors grown by 10% - but still considered as stable disease - Still on the trial but not optimistic that I will respond, hence looking for other types of treatment PS. Has ANYONE ever survive advanced liver cancer with chemo for more than 5 years??? Regards, CH. Seage Thu, 19 Jan 2006 00:00:00 GMT 1999 left lobe of liver removed at Mayo Clinic 2000 spot on right lobe appeared 2001 small nodules in both lungs appeared (METS) Decided to monitor by way of CT Scan 2005 Both nodules and tumor on liver increased 2005 Chemo times 8 cycles reduced all by 50%. Gemcitibine and Cisplatin combination was used. 2006 will return for CT Scan end of Feb, 06. I'm going on 6 years now. Statistically no known cure just slow down management at this time. I've tried all the soups ,teas, etc. waste of money in my opinion. stay active; one thing I've learn is this cancer does not like oxygen excess and slows growth. Jeff G. Jeff G. Thu, 19 Jan 2006 00:00:00 GMT Hello Jeff, Thanks for the encouraging reply. I remember asking my oncologist if she knew anyone who survived more than 5 years with HCC + mets and she just looked down and say no. So knowing that someone made it is comforting. I have a few more questions which I hope you could help me with: 1. You discovered the lung mets in 2001 but only started chemo in 2005. What treatment did you take between those years? Curious because without treament, my tumors seem to double in size in 3 months. 2. Was gemcitibine and cisplatin the only chemo you were on? Or is it the only one that worked for you? How were the side effects? 3. Excess oxygen, huh? So what sort of activities do you do and how often? Thank you for your post and best of luck in your next scan. 8) Seage Fri, 20 Jan 2006 00:00:00 GMT 1. None except 1 10mg of clonzapam at bedtime and 1 20m0g of paxil in the morning. Daily, very hot baths, and I ate lots of oatmeal and Bran flakes smothered with blueberries and bananas. 2. Gemcitabine and Cisplatin only treatment 3. Walking and walking and walking I will have a good discussion with my Oncologist next visit about Oxygen treatments and see what happens. I also during the years have done mind picturing from my scans and self talked the cancer tumors to stop growing. I know sounds crazy but My Dad always told me "IT's Mind over Matter". ? Jeff Jeff G. Wed, 25 Jan 2006 00:00:00 GMT We finally stopped asking and told doctors we didn't want them talking about 'time' limits...so often they are self fulfilling. those 2% chances etc...someone has to be them. if we'd have listened to our first doctor (for about 1 hour she held that title) we'd have buried my dad a long time ago....your positive attitude may not make medical journals as the latest drug of choice for oncologists, but i'll take it anyday...you CAN do it....you're heading in the right direction...you'll make it and then tell them what chance you had. Peace be with you and take care! Weadocm Thu, 26 Jan 2006 00:00:00 GMT I am 40 and have had metatastic liver cancer since 2002. I actually had a large malignant tumor in my pancreas which had spread to my liver, and the tumor itself had probably been there for years. I have had various treatments for recurring liver tumors including resection, RFA and embolization. My tumors began growing and spreading in spring 2004. A friend of mine, who is a nurse, introduced me to a product called Ambrotose. It's a glyconutrient (there's all kinds of info on the web.) and it promotes healthy cell communication. I started taking it in the fall of 2004 and my liver tumors stopped growing. It can be purchased from a company called Mannatech. I've done a lot of research on cancer and nutrition, and it seems the best way to fight it is through diet and good health. Cancer doesn't like sugar, either, so I cut that out. Ambrotose is like eating tons of vine-ripened fruits and vegetables. It's not an herb or anything like that. It's just a food product. Most of the food we get today is not vine-ripened and we don't get the nutrients that we should. Cells turn cancerous when they don't have the proper nutrients and can't communicate with healthy cells. Ambrotose gives our body what it needs for the cells to stay healthy. I personally know 1 other person with lung cancer and 1 with MS who have been taking this for 1-2 years. The 1 with lung cancer is now cancer free and the 1 with MS has been continually getting the use of her hands and legs back. I have my whole family on it and I wouldn't suggest it unless I really felt it worked. I've sent other people on this site information on this on the liver, pancreas and alternative treatments message boards. You might want to look for them and think about checking out this product. It can't hurt to try it. It also gives you more energy and I've heard that it lessens the side-effects from drugs and chemo. Kimgee Thu, 26 Jan 2006 00:00:00 GMT Thanks a lot for all the replies, esp Jeff. My oncologist is recommending a combo of Adriamycin, Oxaplatin or Gemcitabine. I personally, do not like my chances with chemo, seeing how the response rates are less than 20%. So I'm seriously considering RFA again. However, one oncologist I've consulted is dead against the idea for a few reasons. Mainly, she feels it won't help me at all. Wonder if anyone out there has any opinions on this? Seage Tue, 07 Feb 2006 00:00:00 GMT Hi Seage, Of the 4 Oncologist I have talked with were all against RFA treatment as well. If anything stirs things up I was told. Glad to hear your trying new Chemo treatment. Be sure they prescribe antacid to take daily 30 minutes prior to breakfast and anti nausea medication every 6 hours as needed. But I took every 6 hours during the day as if you wait until needed (PRN) you will get sick. lost very little hair. Only persistent side affect at present is numbness in toes and fingers with some shooting pains. It,s tolerable pretty much during the day I usually take a Tyenol#3 at bedtime. My Ct Scan showed no change/stable since November in both lungs and liver. Go back for another scan in a couple of months. Mean while I need to fined some employment. Good luck with the new regimen. Jeff Jeff G. Sun, 12 Feb 2006 00:00:00 GMT Hello Jeff, I am seriously considering RFA for my situation. Hence was wondering why your oncologist was against the idea and what you mean by "If anything stirs things up I was told". Meanwhile, thanks so much for your tips on coping with chemo. -seage Seage Wed, 15 Feb 2006 00:00:00 GMT Hi Seage, The reasons I was given is that RFA stimulates growth of cells both good and bad. That it doesn't specifically target malignant tumors and that if anything it would more likely cause spreading of tumor cell after inital treatment. One Oncologist just shook his head in discuss and commented that there should be a law to hang those quacks. But Remember it is your life and different treatments respond differently on different people and cancer types. so if your inclined to try it and nothing else has been effective, well good things happen when we least expect it. If things change with me I would certainly look at it as an option personally as Oncologist surely have different opinions and preferences on ways to provide treatment. stay positive and keep on pushing on! Jeff Jeff G. Wed, 15 Feb 2006 00:00:00 GMT I have had breast cancer since 04 and now it there are "spots" on liver and lungs. The best thing that I take is Sun Farm Vegtable Soup, which is from a Chineese Dr. who created this for his mother who had cancer. It is an all natural ingredients. Here is contact info: Connecticut Institute for Aging and Cancer, 203-777-6639, They are doing trials now and very successfully! Web site: www.CIACancer.com I have been taking this for almost 2 years and it has believe that it has truly helped me. I am now taking novalbine and herceptin chemo for the liver and lungs. The greatest thing to remember is NEVER GIVE UP! KEEP FIGHTING! Psalm101 Sun, 26 Feb 2006 00:00:00 GMT My husband age 52 has primary liver cancer, Hep C and cirrhosis. He was diagnosed with all three during a health check up (hadn't had a check up in many years). At time of diagnosis he had at least 5 tumors; the largest was 5.3 cm. Too much cancer for a transplant. We got medical opinions from UCLA, Stanford, UCSF, etc. All agreed that there was too much cancer for RFA to be effective. Only UCLA suggested chemoembolization and we decided against it because of too much risk of losing liver function. Instead, my husband has been on Tarceva 150 mg since late October and ctscans show disease stabilization and some shrinkage of tumors. Side effects include a rash; overall quality of life has been excellent. If and when Tarceva becomes ineffective, he'll begin with Nexavar (sorafenib) which was approved for renal cancer in Dec 2005 and is in stage 3 of clinical trials for liver cancer. There are also trials combining Nexavar with Doxorubicin. You do not have to be on a trial to use these drugs; once a drug is FDA approved for any disease, an oncologist can prescibe it. Ask your oncologist about his experience in prescribing these drugs; if he has no experience, consult with an oncologist at a major university. Good luck, mjane Mjane Sat, 04 Mar 2006 00:00:00 GMT Hello Mary, Thanks for sharing. And hope Tarceva continues working for your husband. Is he on Tarceva alone? Or is it a multiple agent regimen? Also, how long has it been since he was diagnosed? As you may be aware, liver cancer stats (as with most cancer stats I guess) are rather discouraging. Hence whenever i know of any fellow HCC patients, i'd ask how long it's been. It is always inspiring to hear people who have kept on trucking more than the usual 6-12 months that doctors normally give us. Meanwhile, there are a few different chemo regimens offered by my doctors here (PIAF, GemOx, GemCis and cetuximab) - each with their own preference. I shall make a decision soon. Anyone else with experience, pls do feel free to enlighten me. Thanks. Seage Wed, 08 Mar 2006 00:00:00 GMT My Mother went to Hospital Santa Monica in Mexico for alternative treatments for liver and pancreas carcinoma and had terrific results. The tumor in the pancreas is gone and the liver mets have reduced by 30%. They use low dose unsulin chemotherapy, oxygen therapy, IV vitamin C therapy, Hyperthermia, etc. They also put you on a no suger diet as Cancer cells love suger. When you go home they have you take many anti cancer supplements. All treatments are non toxic and have little or no side effects. My mother underwent 5 cycles of chemo(Carboplatin and CPT 11) with no tumor response and only got extremely sick. We then went to HSM and used the same chemo in low doses using a technique called IPT and had the amazing results that I mentioned above. Our Oncologist here said that if we went to Mexico that they would just take our money and that nothing would work. He has since changed his mind upon seeing our last CT scans that he took last month after our return. They will all tell you these things don't work, but for a lot of people, they do. The other guy that wrote that Cancer does not like oxygen and loves suger is right, also, a positive attitude works wonders. Meditation and visualization have healed many people, dont think it's to wacky to try. If you cant get over the Mexico part, their is a clinic in Reno called the Reno Integrative Medical Center that pretty much does all of the same treatments, although they are not live in and are three times the cost. I personally know people with stage four Cancers that have been put in remission from both places. The Ambrotose suggestion is also good, my brother sells Mannatech and knows many people that have benefited from this product. I believe that my mother had such a great response because all the treatments were put together and they all focus on building up your own immune response and at the same time having many anti cancer properties. Don't give up and don't be afraid to try something different. Purki1 Sat, 18 Mar 2006 00:00:00 GMT Jeff, I stumbled on your treatment of your cancer. It sounded like I was listening to myself. I also pictured in my mind of the cancer cells being removed, and try to feed them o2. I sit in my hot tub nightly, and eat oatmeal (steal cut) with a cup and a half of blueberries each morning. If you would like to read my story on Lance Armstrong Foundation's web site, paste the address below in your browser. After reading it if you would like to get in touch with me let me know. Ernie (Harold). http://shareyourstory.livestrong.org/siteapps/personalpage/ShowPage.aspx?c=ijIVI2PFKoG&b=738859&sid=9iIKL0NFLbIUIaMGLmE Ernrol Thu, 30 Mar 2006 00:00:00 GMT Hi ,My father has liver cancer in wich he has been fighting for about 1 1/2 year now after getting over his bowel cancer. Ive personally seen alot due to spending so much time with my father with his up's and down's .I really have to say that i dont understand this chemotheraphy treatment....it totally strips one body of any goodness it has to offer. Your good and bad blood cells are demolished and fresh one's regenarate. This approach is obviously to kill then tumours but what hope is there of some ones immune system to cope with this illness. Cancer feeds off low oxygen content very good way to feed it when some one has no get up and go in them due to being immobilized and bed ridden to a almost stripped immune system that has to repeatedly been hammered. As the oncologists say "KEEP FIT" sheeeesh us humans arnt superhereos but more like guinea pigs for the mighty $$. My father on Monday just gone ,asked the dreaded question and was given 4 weeks to live.He was given an option if he would like a last chance hope of having some more chemo in wich he hasnt had for 10 weeks. He chose to have in wich i respect ...he's a fighter like all of you...but now hes back in hospital to weak, in pain due to chemo,only hoping to shrink his tumours blocking his bile ducts of his liver so his liver can drain bile properly . I have come across tonnes of cancer sites on understanding cancer and there is some very interesting information out there that really doent gel with the treatment of chemotheraphy. I personally think the medical world is either on the wrong path with the potent drug or just blinded to the fact that somthing more simplified would be more effective and less harmfull rather then the $.There is many alternative theraphies but who knows do they work? Some people you talk to say ask whos treating you ,but vary rarely will you get anyone from and oncoligist team having advice on alternative treatment, like ive experienced. Cant comment on it, not enough research put into it ,so cant recommend it they say.How long has cancer been around now for some descent research done on alternative medicines from the guru's. IM so sorry for all of you with this evil illness ....Hopefully you all pull through keep up the fight . Its horRible to feel so helpless and makes me angry to see this horrible drug take people down. HOW MUCH CAN ONE'S BODY HANDLE God Bless Rythmrig Thu, 11 May 2006 00:00:00 GMT Dear Jeff,first,the healthy body attack.Move to a semi vegetarinan diet,the Gerson is a good start.Consider using wheatgrass drinks-great for cleansing the liver.Many herbal supplements-worth checking a few out.Too many to name. Treatments.Look seriously at the HIFU/HAIFU technigues using ultrasound.Mostly practiced in China but also Singapore,Australia,Japan. I would try to find a reliable Rife practitioner too but Rife never published his frequencies,as far as i am aware-he certainly got results. Haifu 1. Tue, 20 Jun 2006 00:00:00 GMT