Surveyor

Hi Joanie, I think marym is “right on.” I’ve been taking 200 mg. of Celebrex twice a day for over 1 ½ years as an adjunct therapy. I’ve heard that it is effective in about 25% of cancer paitents. I’ve been taking it in the morning and with lunch. Recently noticed I had lots of aches and pains in the evenings and started taking the second daily tablet in the evening. Taking them about 12 hours apart really helps me with the aches and pains and hopefully it is helping me fight the cancer.

Hi Joanie, I think marym is “right on.” I’ve been taking 200 mg. of Celebrex twice a day for over 1 ½ years as an adjunct therapy. I’ve heard that it is effective in about 25% of cancer paitents. I’ve been taking it in the morning and with lunch. Recently noticed I had lots of aches and pains in the evenings and started taking the second daily tablet in the evening. Taking them about 12 hours apart really helps me with the aches and pains and hopefully it is helping me fight the cancer.

As you can see by my profile below, I’m going to resume radiation treatment in January, ’06. The doctor said he would also prescribe Xeloda. He said it has minor side effects in most people and radiation actually enhances the anticancer medicine. I’ve noticed mostly positive comments on earlier Xeloda posts. Bphyllis spoke highly of Xeloda, but said, “it works well for women but not men for some reason.” Anyone know why this maybe so? Have any men had positive results? The active ingredient in Xeloda is capecitabine. It’s a tablet that was approved by the FDA in 1998. Primarily used for colorectal or breast cancer. I read that in a bladder cancer trial (mostly a disease of older men and it said ½ of patients were over 80) treatment with Xeloda and radiation therapy resulted in a complete disappearance of detectable cancer in the majority of patients (11 out of 13). Of the 11 patients who had no detectable cancer after treatment, eight survived without cancer recurrence during the roughly 10 months of follow-up. The most common adverse effects of treatment were fatigue, diarrhea, and dehydration. Three patients had to be hospitalized because of adverse effects of treatment. Thank you for any help or thoughts.

My wife and I attended the CURE National Patient & Survivor Forum in San Diego on Oct. 15 & 16. We enjoyed it and would recommend it to anyone who can attend a future forum. Notes and thoughts would include: • CURE will hold 6 conferences in various places across the nation in 2006. • Hopefully, all of you know CURE is a free magazine for all who apply. I’m going to review past articles at: http://www.curetoday.com/ as soon as I have time. • The conference would be of great benefit to those who are just starting their cancer journey. • The cost was low ($50) because of a number of sponsors. The hotel was great and worth the $119 per night in high priced San Diego. The sponsor exhibits were interesting, helpful and not “pushing” their products. Besides that, they all had nice little freebies (pens, radios, thermometers, etc.) and provided a decent continental breakfast both mornings. The first thing they did was give you a bag (about the size of 5# of potatoes) full of goodies. • The CURE staff was wonderful and the speakers were almost all great. They presented a number of angles to the disease. • I had lunch with Dr. Phillip Berman (2 year Stage IV NSCLC after testicular cancer). His blog site is www.redtoenail.org. I attended his interesting keynote speaker address Sunday called: The True and Full Confession of Dr. Doom. If you email him and request the list of 20 supplements he takes, he will email them to you. Dr. “Doom” also recommended Dr. Gurgevich's Amazing Hypnotic Tonic as a C.D. that he wore out listening to early in his cancer battle. • The Complementary Breakout Session on Herbs & Supplements – Linda Smith from Duke University was good. I think all of the attendees wished the session would have been longer. I also think it is good that Duke University is looking at the holistic side of treatment and not just concentrating on chemotherapy. One member of the audience said supplements are deductible from your income taxes if they are prescribed by a health professional (not necessarily a doctor) according to the tax code. Ms. Smith mentioned that most cancer patients have low amounts of CoQ10 in their blood. • Kathy LaTour was a Keynote Speaker and member of CURE staff. She is an interesting person, great speaker, aggressive breast cancer survivor, and worth the trip to San Diego for me. • Dr. Jonathan Dowell spoke about Breakthroughs in Lung Cancer, but it was mostly a review of newer chemotherapies that we’ve discussed on this forum in more depth. I found his short discussion of hemoglobin levels interesting. Apparently if it falls below 10 (Indonesian rubber worker study) there is reduced energy and cognitive abilities. My notes indicate he thinks the cutoff maybe around 12.85. Since chemotherapy really hits our blood levels, I found this interesting. After 1 ½ years, my hemoglobin (and other counts) is still low. He mentioned dexmethyiphenidate (a relative of retalin) for energy and cognitive improvement. I did a google search but could not find out much except that dexmethyiphenidate (fosalin tablets in 5 & 10 mg) were provided free to needy patients on some websites. Does anyone have experience/knowledge of dexmethyiphenidate? • Another keynote speaker was Daniel Shapiro who presented an uplifting and entertaining talk entitled “Mom’s Marijuana.” I think he wrote a book by that name. • I had the most fun in a Complementary Breakout Session on “Healing through Movement & Exercise” by Sherry Lebed Davis. Now doesn’t this sound like something we all need? Well, it turned out to be directed at breast cancer. I was one of 3 males (1 left right away) and about 35 women. It ended up that I had more laughs and fun in that class than the rest of the forum combined. Sherry Lebed Davis and the rest of the “girls” were great! • I wasn’t too excited about the “Meet the Authors: Wine & Cheese Reception,” but it turned out to be fun. A few authors were there selling their books, but they really seemed more interested in just talking and sharing. They were all very interesting. I also met a Dr. Peter No from Hawaii. Peter had taken the body fat test with my wife and she said he had “0” body fat and he nearly did – that started the friendship. Peter was a cancer surgeon, but has started leaning more towards the holistic approach to cancer. Nice to talk with a doctor who isn’t so positive that western medicine/techniques has all of the answers. • Other websites mentioned at the conference: www.cansurvive.org and www.cancerguide.org. My best wishes to everybody.

I received the following reply to an inquiry I made and it may be of interest to anyone looking into the Chinese herbs: Thank you very much for your reply. The Canelim Capsule also contains the powder of strychnos pierriana, K Al(SO4)2-12H2O, and other ingredients which is very little percentage that Pharmaceutical do not mention in their product direction to save the trouble in import matter. We think the doctor really charges you much more than it should cost in China. Canelim is the only Class A medicine that can be claimed for the medical insurance in China, it is also a standard treatment for the cancer patients in over 2000 tumor hospitals in China. Refer to the medicines you mentioned, they are described in Chinese medicine theories as follows: 1.Ba Zheng San is for urinating the heat from the body because cancer always generates heat inside the body. 2.Nei Xiao Luo Li Wan is for soften and remove the tumor/cancer which it caused by phlegm. 3.Xue Fu Zhu Yu Wan is to decongest the blood left inside the body which it causes pain or accumulated to cause neoplasm. 4.Shi Quan Da Bu Wan is for women who is insufficient blood and qi, who is also good for patients with weak immunity, but it should be applied when the evil is gone because it will otherwise nourish the evil qi to grow inside the body (helping cancerous cells grow rapidly) We hope the above information you will find them useful. Actually, your Chinese doctor will know you better for the current situation for which medicine is most suitable for you. Should you need more information, please do not hesitate to contact us. Best regards, FuQiZheng (Order) www.tcm.hk Edited: Nov. 22, 2005 I found a source for canelim in Hong Kong. I ordered 10 bottles (100 capsules ea.) for $25.60 including delivery by air parcel. I had to wire them the money, but received the parcel today. If interested, please send me a private message and I'll be glad to forward you additional information.

Hi marym, I had chemotherapy in a Phase I clinical trial. Completed 6 cycles. Each 21 day cycle: PS-341 (Velcade) on days 1, 4, 8 & 11; Gemcitabine on days 1 & 8; carboplatin on day 1. Had port installed after swelling of veins. Port was removed after chemo because of blood clot. CT scan showed no change in tumors between cycle 4 and cycle 6. I had trouble with the blood counts and was on Procrit for last 4 cycles. My blood counts are still a little below normal. At conclusion of chemotherapy: The PET scan showed the lung tumor with max/average SUV’s of 2.8/2.1 and the adrenal tumor with max/average SUV’s of 5.6/4.4. CT showed both tumors shrunk about 50%. Good luck – hang in there!

Hi marym, I had chemotherapy in a Phase I clinical trial. Completed 6 cycles. Each 21 day cycle: PS-341 (Velcade) on days 1, 4, 8 & 11; Gemcitabine on days 1 & 8; carboplatin on day 1. Had port installed after swelling of veins. Port was removed after chemo because of blood clot. CT scan showed no change in tumors between cycle 4 and cycle 6. I had trouble with the blood counts and was on Procrit for last 4 cycles. My blood counts are still a little below normal. At conclusion of chemotherapy: The PET scan showed the lung tumor with max/average SUV’s of 2.8/2.1 and the adrenal tumor with max/average SUV’s of 5.6/4.4. CT showed both tumors shrunk about 50%. Good luck – hang in there!

Thank you DianeFox. I have heard of Coriolus & Reishi Mushrooms. Actually, I have some Reishi Mushroom with Astragalus tablets that I was planning on taking before seeing the herbalist. Maybe I’ll fit them into my “get well no matter what” routine in the future. http://www.jhsnp.com/ “Known as PSK in Japan and PSP in China, the immune supporting beta glucans extracted from the medicinal mushroom Coriolus versicolor are one of the first herbs from Traditional Chinese Medicine to be fully backed by modern scientific research. . .” Medicinal mushrooms mentioned are: Coriolus Versicolor, Cordyceps, Maitake, Reishi. Thank you Leslie for your input. You are a great contributor to this site and I always appreciate everything you have to say and the links you give. I like the Chinese study better! Unfortunately, I’m really getting skeptical about anything put out by the American Cancer Society. Personally, I think they are a big outfit that uses a large percentage of their donations to keep their bureaucracy alive and may only speak for the American Medical Association. An internet search on canelim finds several Chinese clinical studies showing a possible benefit. Admittedly, they may be all lies from their drug companies. I don’t know either! What I do know, is one survivor and other people who speak highly of the herbalist I saw and Chinese medicine in general. The survivor and friends of friends were left without viable options and seemed to recover (or at least enjoy more life than expected). My observation has been that our health care system only promotes (and only does thorough clinical trials for) recent and expensive drugs. Some of us are being left to twist in the wind. I know Chinese people die too, but I figure the treatment can’t hurt in my particular situation. A couple of quick “Google” links would be: http://www.xiancp.com/e-product-pingxiaojiaonang.htm http://www.tcm.hk/index.cfm?id=11945&fu ... &pageid=96 Hi francesbean. You must have some really good herbalists in Manila. Have you checked any of this stuff out? I would love to hear anything you have learned. After starting this thread, I did some searching for availability & prices. I was able to find the following links, but could not find a source for the canelim tablets (number 5 below). There are a lot of canelim tablets available, but the ingredients vary, so I think I should try to find the suggested brand. I really wonder if I even need the first two (Plum Flower pills). I would really appreciate comments (or a private message) from some of you who are somewhat experienced with Chinese herbs. 1. Plum Flower Brand, Eight Righteous Tea pills, Ba Zheng San http://bioessence.com/index.asp?PageAct ... ProdID=901 $6.56 http://www.primeherbs.com/engstore/cr/c ... 5157&cat=1 $6.56 2. Plum Flower Brand, Nei Xiao Luo Li Tea Pills, Nei Xiao Luo Li Wan http://shop.store.yahoo.com/maxnature/gegentangwan.html $4.95 http://www.herbswest.net/groups/plumflower.shtml One website said the following: Invigorating the spleen and replenishing qi (energy), elevating the spleen yang to cure drooping. It is used for weakness of the spleen and stomach, deficiency of qi in middle-jiao, mental fatigue with loss of appetite, fear of cold, perspiring easily, lack of qi, drooping of zang-organs, massive or incessant extramenstral vaginal bleeding. This medicine can help to build up physical strength and resist disease. It is especially used for assimilating nutrition badly, anemia, low blood pressure, chronic hepatitis, chronic diarrhea and nourishing during the convalescence of disease, correcting catching cold easily, enhance immune ability and improving one’s looks. Look carefully at the directions or in compliance with the doctor. 3. Bio Essence Brand, Xue Fu Zhu Yu Wan (Decongest the Blood Mansion Pill) http://www.bioessence.com/index.asp?Pag ... tegory=211 $6.56 4. Guang Ci Tang brand. Herbalist said for immune system & energy. “Shi Quan Da Bu Wan.” http://www.shenenterprises.com/m046.html $?? http://www.maxnature.com/shiquandabuwan.html $6.95 5. The last stuff is mostly in Chinese except for “PING XIAO PIAN.” I believe Ping Xiao Pian is another name for Canelim. It is produced by Shanxi Goldsun Chemical Company Limited and is a private enterprise which is controled by Ningxia Goldsun Pharmaceutical & Chemical Company.

I’m in a “watch” phase of my treatment, so I decided to visit a Chinese herbalist recommended by an 8 year pancreatic cancer survivor. We’re talking recent immigrant – I could only understand part of what he was saying. He sold me the following month’s supply at a cost of $394. I would appreciate any thoughts about the herbal medicines, the cost, other suppliers (the herbalist is 800 miles away) etc. 1. Plum Flower Brand, Eight Righteous Tea pills, Ba Zheng San (4 bottles – 200 pills each). Ingredients: • Lysimachia christinae herb • Akebi trifollata stem • Plantago asaslatica seed • Dianthus superbus aerial parts • Polygonum aviculare aerial parts • Gardenia jasminoides fruit • Glycyrrhiza uralensis root • Phellodendron amurense bark • Rheum palmatum root A space appears and then: Jin qlan cao, Mu tong, Che qian zi, Qu mal, Blan xu, Zhi zi, Gan cao, Huang bal, Da Huang. “Also known as Eight Herb for Rectification, Eight Righteous Teapills, Ba Zheng San Wan.” Take 8 little pills, 3 times each day, before each meal. Forgot why herbalist said I should take these! 2. Plum Flower Brand, Nei Xiao Luo Li Tea Pills, Nei Xiao Luo Li Wan (4 bottles – 200 pills each). Herbalist said “for cancer cell.” Ingredients: • Prunella vulgaris spike • Scrophularia ningpoensis root • Halitum • Angelica sinensis root • Mentha haplocalyx herb • Citrus aurantium fruit-rip, • Rheum palmatum root • Platycodon grandiflorum root • Forsythia suspend-root • Sargassum pallidum herb • Fritillaria thunbergii bulb • Trichosanthes kirilowii root • Glycyrrhiza uralensis root • Rehmannia glutinosa root-prep. • Mirabilite • Ampelopsis japonica root • Notarchus leachii egg A space appears then: Xia ku cao, Suan shen, Da quing yan, Dang gul, Bo he, Zhi ke, Da huang, Jie geng, Lian qiao, Hal zao, Zhe bei mu, Tian hua fen, Gan cao, Shu di huang, Mangxiao, Bia lian, Hai fen. “Also known as Dissolve Mass Pills.” Take 8 little pills, 3 times each day, before each meal. 3. Bio Essence Brand, Xue Fu Zhu Yu Wan (Decongest the Blood Mansion Pill). Herbalist thought I had some fluid around lung. He said this pill for Chest & “plural.” (4 bottles – 200 pills each). Ingredients: • Tao Ren (Persica Semen) 16% • Shen Di Huang (Rehmannia Radix) 12% • Chuan Niu Xi (Cyathula Radix) 12% • Dang Gui (Angelica Sinensis Radix) 12% • Hong Hua (Carthamus Flos) 12% • Zhi Shi (Citrus Auruntiunm Fructus) 8% • Chi Shao (Paeonia Rubra Radix) 8% • Jie Geng (Pltycodon Radix) 6% • Chuan Xiong (Ligusticum Rhizoma) 6% • Gan Cao (Glycyrrhiza Radix) 4% • Chai Hu (Bupluerum Radix) 4% Take 8 little pills, 3 times each day, after each meal. 4. Guang Ci Tang brand (4 bottles – 200 pills each). Herbalist said for immune system & energy. “Shi Quan Da Bu Wan.” Ingredients: • Radix codonopsis (dang shen) • Rhizome atractylodis macrocephalae (bai zhi) • Poriae (fu ling) • Tadix glycyrrhizae (gan cao) • Radix angelica sinensis (dang gui) • Rhizome chuanxiong (chuan xiong) • Radix paeoniae albae (bai shao) • Radix rehmanniae (shou di huang) • Radix astraqali (huang pi) • Cortex cinnamomi (rou gui) Take 5 little pills, 3 times each day, after each meal. 5. The last one is “PING XIAO PIAN.” I don’t know if this is the brand name or the contents. Herbalist said “for shrinkage of tumor size.” A paper inside says this is the Canelim tablets I had previously inquired about on this website, but it looks like it contains a few more herbs, feces, etc. Ingredients: • radix curcumae • sermen strychni pulverarum • herba agrimoniae • faeces trogopterori • alumen, niter • resnia toxicodendri • fructus aurantii. Take 5 little pills, 3 times each day, after each meal.

The 2005 Cure National Patient & Survivor Forum in San Diego will be on October 15 & 16. I’m going to go with my wife and see if we can have some fun while learning a little. We’re going to stay an extra day and take in the zoo. If you’re going and would like to meet, please PM. The cost of admission is $50 (and another $50 for my wife). It is at the Town & Country Resort & Convention Center - room rate for two is $119 per day. Has anyone been to one of these Cure forums? If so, was it worthwhile? Would you make any suggestions of things to bring, see, do, etc.? http://www.curetoday.com/patientmeeting

Posted: Sat Aug 13, 2005 7:41 am on lchelp.com Post subject: My thoughts: surviving cancer under LC SURVIVORS category. I’ve been fighting NSCLC (first diagnosed as Stage IV) for nearly 2 years. I think I’ve learned many things and would like to post some of the things I’ve encountered that may help others. I honestly think that I would not be here if I not stumbled on this website early in my cancer fight. I spent time going back through all of the archives. Many of the things mentioned below, I either read here or was led by this site to investigate something further on my own. Thank you to all of the website supporters, volunteers and other posters who make this valuable forum possible! I believe my cancer fight has been blessed. Too many doors have been opened just when I needed them! I’ve felt pretty good and enjoyed life for these last two years. I don’t have the energy to work and play as hard as I would like, but I’m up and around. My wife of 40 years has been my rock to hold onto – this whole experience has been harder on her than me. Our two grown sons have been very loving and around more than usual. I’ve been in a lot of people’s prayers and I know this has helped. Cancer blindsides most of us. I am a land surveyor who enjoyed a small practice doing my own field & office work. We had just moved to a new area (to make more $$) and I suddenly had swollen ankles. The first doctor was sure it was gout. He did order a blood test and it came back that I was anemic, which explained the old age creeping up so fast.) I had been a vigorous guy in his late 50’s.) Next visit, I saw another doctor at the same clinic and he suggested iron supplements and keep my feet elevated. About this time I had a call from a recommended internist’s office who initially was not accepting new patients, but I asked them to call me if they ever had an opening. This doctor ordered a chest X-ray – bingo – my cancer battle began. Fortunately, I had a major medical insurance policy and a little savings. By the way, Blue Shield of California has been fantastic throughout my battle – they’ve never denied a procedure and quick approval was always forthcoming. The next stop was a medical oncologist at a small cancer clinic. He thought I should take palliative chemo-therapy and be prepared for hospice in the near future. I went home and started studying. Read something about clinical studies and asked the oncologist on my next visit if he could recommend and get me into a clinical study. A few weeks later I was taking chemo at major university medical center in California. The protocol for my illness was palliative chemotherapy only. After the clinical trail, I was supposed to go home and they would observe. To me it seemed like they were going to observe the progression of the cancer and see if the chemo-therapy added any time to my lifespan. The protocol business looked like it was setup to protect the doctors from liability. I have seen too many friends and relatives get different forms of cancer, receive chemo-therapy, slide downhill and die within six months or so. At this time I figured I better move my wife back to our hometown to be close to friends & family. Friends I had not seen in years came around to help us move. With the move I was driving to 250 miles (one way) 5 times every 3 weeks for chemo and to see the medical oncologist. My ankles were still swollen and the oncologists just said that the adenocarcinoma was causing it. One day while I was receiving my infusion, a substitute nurse came around and asked me how I was doing. I mentioned I was fine except for the swollen ankles and she took a look at them. That day I had an ultra-sound and was put on coumadin for the blood clots. It was interesting that the smart university oncologists were ignoring this symptom. I think I read somewhere that 20% of lung cancer patients actually die from blood clots rather than the cancer! During the clinical trail I was getting CT scans & blood tests at a local cancer center that specialized in radiation therapy. The local radiation oncologist in my hometown also checked on me. One day he noticed how hard and swollen the forearm veins were where I was getting my infusions. He was angry – said the veins were going to be killed with the Velcade, carboplatin and gemcitabine – there was no reason for me not to have a port. Mentioned this to the oncologist at the big university medical center and within the week, I had a port. After completing the chemo-therapy, I had a CT scan that showed a blood clot where the tube tied into the large vein in my neck – we had to have the port promptly removed. The local radiation oncologist felt that he could justify radiation (I think he stretched protocol a little) because it looked like I only had the primary lung tumor to the right upper lobe with a metatasis to the left adrenal gland. Other questionable areas had cleared up during the chemo-therapy. The tumors were smaller after chemo-therapy, but still viable. They had an IMRT (Intensity-Modulated Radiation Therapy) machine and he thought he could kill what remained of the two tumors. The IMRT shoots from different fields to lower normal tissue damage. The radiation therapy was no big deal and I thought I had the maximum rads (I guess surgery in those areas maybe out of the question now). I need to do more research in this area. A follow up PET scan showed an increased SUV of 6.2 in the adrenal area that looked like the cancer was still kicking! I was referred to another medical oncologist. I wasn’t impressed with him – he said it was time for Iressa as a “last line defense.” I didn’t like the sound of “last line defense” nor the thought of relying on a drug that usually didn’t work in white males who used to smoke. I had been reading about radio-frequency ablation. Adrenal tumors were one of the areas that the procedure was effective, so I started researching and calling. Found a cancer clinic with a doctor who had performed quite a few operations using micro-wave (as the heat source) for the ablation. The doctor thought I was a good candidate. I was in the hospital in the morning, out the next morning with a band-aid on my back and drove the 250 miles home while talking with my wife. Since then, I’ve been going back to my old radiation oncologist – a smart, caring doctor who is truly interested in helping me and doesn’t worry about other medical egos. Three months after the ablation, a PET scan showed the lung and adrenal areas just looked like scar tissue. However, it also showed a lymph node with a peak SUV of 4 about 3/8” (8mm) in front of the aorta to the left kidney. Subsequent CT scan (fusion with PET scan) showed the node measured 11mm x 8mm. PET in June, 2005 showed the node had a SUV of 6.5. My doctor is observing. The lymph node is in a bad place being so close to the aorta. Nothing else is showing up and I’m still feeling pretty good. Any ideas or thoughts about what my next step might be with this lymph node would be appreciated. From what I’ve observed, it seems that each specialty (radiation, medical or surgical) thinks their procedures are the only ones that can cure cancer. It sure seems like the medical profession needs to merge their expertise into a whole and treat the cancer patient with everything possible. The protocols should be scraped – each patient is different and a procedure outside of the standard should be considered if it may save, prolong, or improve the quality of a cancer patient’s life. There are a lot of procedures available to patients that doctors usually don’t recommend. If patients do hear of a different procedure or option, many times it is too late. It seems like some doctors think their specialty has the magic touch and nobody else can cure cancer as well as they can. I’m thinking of things like: •chemo-therapy after surgery for early stage lung cancer patients •not ignoring radio frequency ablation •surgery & radiation as adjunct therapy if you are only getting chemo-therapy •radiation & chemo-therapy at the same time if the cancer is inoperable •forget the protocols and throw everything possible at the disease – take a chance •alternative medicine •adjunct therapy along with standard treatments •dietary & exercise changes •encouraging participation and questions during treatment •recommending supplements that may help treatment. We need to be proactive in our treatment. I know this doesn’t apply to anyone reading this (because you’re reading this, you are proactive) but my doctor told me that most of his patients don’t ask questions or try to understand what is going on. He said his proactive patients usually do better than the ones that just sit back and expect him to have all of the answers. The medical profession also needs to be more proactive. If a cancer is not responding to chemo-therapy, we know what the outcome is going to be. If the patient wants aggressive treatment for a stubborn cancer, they need to throw out the protocol and try something different while the patient is still strong enough to fight. Why can’t they try RFA two or three times on a large tumor? Why can’t they throw more than the maximum rads at a cancerous area. Why can’t they try a radioactive seed in a “dangerous to remove” tumor. There are certainly cancer fighting tools out there we know nothing about. If I’m going to die, I would like the option of trying anything that might help. Until we have cancer, we don’t realize what we’re up against. The medical profession owes us more than a cookbook protocol. Don’t let nurses, technicians, clerks or even doctors interfer with your quest to get well. Ignore the assistances who are not helping you and find new doctors if you’re not getting the care you need. There are hurtful people everywhere. Don’t let people who are having a bad day cause you to hesitate about asking a question or posting something on this board. I’ve had several private messages from people who have edited their posts of useful information or no longer post detailed information because they’ve had their feelings hurt or motives challenged. We all lose when this happens. Man, we all have bad days while fighting this disease. I recently noticed I was being very critical of those around me; naturally, I could not take back the hurt feelings I caused! I’m taking/doing the following: (Please do your own research) Prescription medications: Lorazepam (Ativan) 1 mg tablet (taken before bed with 12 mg. melatonin). Celebrex, 400 mg (200mg twice per day). [adjunct therapy – COX 2 inhibitor & helps the old acheeee bones] Vytorin (cholesterol lowering (10 mg. Ezetimibe & 20 mg. Simvastatin) – 1 per day. [adjunct therapy] Supplements/over-the-counter: Aspirin, 325 mg. once per day with lunch. [adjunct therapy – blood thinner & COX 1 inhibitor] Omega 3 Fish Oil – 8000 mg. each day (4000 in a.m. & 4000 in p.m.) [adjunct therapy] Centrum Silver multivitamin/multimineral – once a day in morning B-50 formula – with lunch. Potassium Gluconate, 550 mg. per day Coenzyme Q10 – 200 mg. per day. [adjunct therapy] Selenium 100 mg. once per day. [adjunct therapy] Grape seed extract, 100 mg – once a day. [adjunct therapy] Melatonin – 12 mg. each night. [adjunct therapy] Helps me sleep better too. Curcumin – 250 mg. once per day. [adjunct therapy] BetaGlucan 60 mg. per day in morning on empty stomach. [adjunct therapy] Cimetidine (generic Tagamet) 600 mg. per day (200 mg. in AM, afternoon & PM). [adjunct therapy] Other: 1.About 6 cups of tea during day: Rosemary, Pau D’Arco, green, licorice root and others. 2.Drink lots of filtered & ionized water 3.Try to eat plenty of fruits & vegetables 4.Exercise for ½ hour or more at least 4 times each week. To everyone on this board who has helped me in the last year or so. . . THANK YOU

I saw the following on another cancer site and thought it might generate some interesting comments: Fruits and vegetables high in antioxidants and other cancer-fighting compounds have long been thought to curb one's cancer risk. It now appears that another group of foods--including turmeric (one of the major spices in curry powder), red grapes, rosemary, and green tea--has joined the ranks of these potent anticancer nutrients. Interestingly, these foods have properties resembling those of the COX-2 inhibitors--popular new arthritis drugs, such as Celebrex, that have been dubbed "superaspirins." COX-2 inhibitor drugs, so-called because they block an enzyme called cyclooxygenase-2 (COX-2), are used to treat the pain and inflammation of arthritis. There is now compelling evidence that they may also protect against cancer. Mitch Gaynor, M.D., director of medical oncology at the Strang Cancer Prevention Center in New York, notes that suppressing COX-2 may be beneficial because, "the COX-2 enzyme helps make carcinogens much more active once they get into your body. The enzyme also allows cancerous cells to grow new blood vessels." A recent study pinpointed the importance of COX-2 in colon cancer (Journal of the American Medical Association, 10/6/99). Colon tumors with the highest COX-2 levels were larger, more advanced, and more likely to have spread to the lymph nodes. By contrast, the enzyme was undetectable in colon tissue from cancer-free patients. High COX-2 levels appear to be fairly ubiquitous in tumors. Dr. Gaynor observes, "We found elevated COX-2 levels in just about every solid tumor we looked at, from lung cancer to breast, prostate, bladder, and colon cancer. We've also demonstrated that when you inhibit COX-2, the cancer cells stop growing." The COX-2 inhibitor Celebrex has been shown to strongly inhibit the development of colon cancer in animal studies. Several clinical trials are now under way to determine whether this and other COX-2 inhibitors have the same effects in people. Beyond antioxidants The good news is that a drug-free alternative to the synthetic COX-2 inhibitors may be as close as your spice shelf. It appears that certain foods are natural inhibitors of the COX-2 enzyme. By incorporating these foods in your diet, you can obtain some of the potential cancer-preventing benefits of the COX-2 inhibitors naturally. Turmeric (curcumin) Dr. Gaynor observes, "Countries like India and Pakistan, where the people eat a lot of curry, have a lower incidence of various types of cancer." Curcumin, the ingredient that gives turmeric its yellow color and one of the best studied of the natural COX-2 inhibitors, has been shown to inhibit the development of cancer in animals. Dr. Chintalapally V. Rao, a scientist with the American Health Foundation in Valhalla, New York, has conducted extensive animal studies with curcumin and notes that while the new drugs "undermine the activity of the COX-2 enzyme, curcumin completely blocks formation of the enzyme itself." The intriguing evidence of curcumin’s anticancer effects in animal studies has prompted a clinical trial of the compound. Dr. Steven Schiff at Rockefeller University in New York is assessing whether curcumin supplements (250 mg twice a day) can inhibit the development of colon cancer in people and plans to publish his findings later this year. Red grapes Another potent COX-2 inhibitor known as resveratrol is produced in the skin of red grapes, where it protects against oxidation and fungal infections. Resveratrol is found in grape juice and red wine; red Bordeaux and French Cabernets contain a particularly high concentration of the compound. Resveratrol appears to help protect against cancer in at least three ways: It has anti-inflammatory effects, it's a powerful antioxidant, and it may prevent cancer cells from progressing to the next stage. Supplements provide about 600 mcg of resveratrol, the amount found in a glass of red wine. Rosemary This common spice, another strong COX-2 inhibitor, also increases the activity of detoxification enzymes. An extract of rosemary, termed carnosol, has inhibited the development of both breast and skin tumors in animals. Rosemary can be used as a seasoning. It can also be consumed as a tea: Use 1 tsp. dried leaves per cup of hot water; steep for 15 minutes. Green Tea Green tea has also been shown to inhibit the COX-2 enzyme, and it has strong antioxidant effects as well. Several population studies have indicated that green tea possesses powerful anticancer effects. A clinical trial evaluating green tea in cancer patients is currently under way at M. D. Anderson Cancer Center in Houston. Experts advise drinking four cups of green tea daily. Alternatively, take two 250 mg green tea pills a day. Select pills standardized to contain at least 50 percent polyphenols, the active ingredients in green tea. Bee Propolis Finally, bee propolis, a sticky resin collected by bees from pines and other trees, is "one of the most potent COX-2 inhibitors," according to Dr. Gaynor. Dr. Rao has found bee propolis very effective for cancer prevention in animals, noting, "You can use it in lower doses than curcumin because it is highly absorbable." It is typically sold as 500 mg capsules. Suggested dose: Optimal doses of COX-2 foods or supplements for cancer prevention (or arthritis pain and inflammation relief) are unknown. In the meantime, it seems reasonable to consume COX-2 foods as part of a healthy cancer-fighting diet, along with plenty of fruits and vegetables. So spread a little curry-rosemary dip on your cracker, sip some green tea, and pour yourself a glass of Cabernet.

John, You got my attention with the flying squirrel feces or bat dung stuff. Made me do some more work and YOU’RE RIGHT! Apparently this excrement is used for a number of ailments in Chinese medicine. Guess I’d take anything if it might help – at least it might give the immune system a workout and help make it stronger. Apparently the other ingredients are herbs and also used for a variety of ailments in Chinese medicine: • Radix Curcumae is turmeric root. • Fructus Aurantii (Immaturus?) is immature orange fruit • Herba Agrimoniae (Hairy Vein Agrimony – could not find the English name) is an herb that is bitter and puckery in flavor. Alisa, I look forward to hearing what your herbologist has to say. If he speaks highly of it, would you mind telling us what he would charge to purchase a months supply? Or, have you found a good place to buy Chinese herbs?

I think I saw a reference (or ad) for Canelim capsules on: http://www.thecancerblog.com/ A Google search led to various Chinese websites offering the product and giving glowing reports of its cancer fighting qualities. According to one source (for purchase) at: http://www.geocities.com/viet_asia_intl/ The product is made of traditional Chinese medicines consisting of: Radix Curcumae 23.5% Frutus Aurantii 45.5% Faeces Trogopterori 18% Herba Agrimoniae 13% The same website also mentioned the anti-cancer function of Chitosan capsules. I know Alisa and a few others take Chinese herbs. May I have your thoughts about these products? Thank you.

Hi BoBennett, I noticed your post about Silymarin. You mentioned that it is one of three supplements that you take. Sounds like you are doing great in your cancer fight and I would sure like to hear more. Would you mind sharing with us what the other two supplements are? I would also be interested in amounts taken and a good source for purchasing, if possible. Thank you.

An ultrasound will detect blood clots in the legs (a simple procedure). Symptoms: I had swelling and pain in my ankles. Best wishes & good luck.

Hi WinsorCat, You asked where to go next. Thoughts to help you brainstorm: Why only 14 radiation treatments? Was the number of radiation treatments held down so you would still be eligible for surgery? If so, maybe surgery should be investigated. I had about 30 daily radiation treatments to each cancer site. Pretty well killed the cancer, but I understand I probably could never be operated on in those areas. If your cancer is inoperable, maybe additional radiation treatments should be considered. My experience has been that each specialist (surgery, radiation, chemo-therapy) seems to think their treatment is the ONLY one. Maybe other opinions need to be investigated. You mention tumors (plural). Where are they? How big are they? If not much bigger than 1” (2.5cm) maybe radio-frequency ablation (RFA) is an option. Look at the “Alternative & Complementary Therapies” posts. Read the posts back to the beginning. There are a lot of good nutrition ideas (but you need to weed out a lot of worthless and high dollar treatments). I believe some of the adjunct chemo ideas with prescription medicine; i.e., celebrex, and ranitidine (for heartburn) have some clinical study evidence showing they help the cancer fight. There seems to be some evidence that over the counter medicines like melatonin, fish oil, zinc, and selenium may also help. You need to do your own research on these and maybe add some of the antioxidants to your routine. Is navelbine in the “carboplatin” group of drugs? How about investigating some of the other standard chemo-therapy drugs? I’m assuming you have non-small cell lung cancer. With small cell, I understand surgery is usually not an option and aggressive chemo-therapy is the standard treatment. I was reading something the other day (I think) that said many cancer cells begin to build up an immunity to most chemo-therapies after about 90 days. With as many chemo-drugs as they have on the market, maybe a patient could make it for a few years just switching to different drugs and who knows, maybe one will hit the jackpot! Good luck in your fight.

Hi Ry, My RFA was covered by Blue Shield of California. It seems every procedure I’ve had has needed insurance pre-approval, but the insurance company has always been fast (same or next day) and has never denied me any procedure recommended by one of their “preferred providers.” Most doctors here seem to be on their preferred providers list. I did a search on doctors offering RFA and inquired about how many procedures (of the needed area) they had done, successes, etc. If they sounded good, I asked if they were on the preferred providers list or checked the list Blue Shield provides their insurance clients. Good luck.

Hi Laura Ann, Thank you for the post. Does the Marinol help your Mom feel better too? Marinol - the Legal Medical Use for the Marijuana Plant. A pharmaceutical product, Marinol, is widely available through prescription ... The active ingredient of Marinol is synthetic THC. www.usdoj.gov/dea/ongoing/marinol.html Is your Mom taking coumadin for the deep vein thrombosis? I've read that a fair percentage of lung cancer patients die from blood clots. Best wishes to you and your Mom, Reily

Okay, okay, I’ll cut out the Vitamin A. Thank you for taking the time to add a few more great days to the ol’ run here on earth. Still don’t know what to do about vitamin B-1, B-3 & B-9 being bad for the cancer battle. Wish I could find some articles/solid evidence on the web. Lisa O – Tagamet – interesting. When I was taking chemo, they prescribed ranitidine (which a quick web search said) it is very similar to Tagamet (cimetadine). I had read that it had some benefits as an adjunct therapy, but I only took it when my stomach was upset. My old prescription was 150 mg. twice a day. Did your doctor tell you to take it everyday, “can’t hurt you and may help you” sort of thing? The following is a good website with an interesting book on line about cancer, nutrition, etc. http://www.positivehealth.com/permit/Ar ... /good5.htm You ladies all sound like strong survivors. I appreciate any and all information.

Hi Alisa, You’ve told me about those B vitamins before. I’m kind of a lazy guy and take the multi-vitamin with minerals (Centrum Silver) to get all the little goodies I might need. Do you have a suggestion on what to take to get the goodies and avoid the bad B’s? Thank you for mentioning the melatonin dose too. My doctor said to take more -- I think he said something like 8 or 10 mg, whatever you want and I just figured that was too many. I’ve got to stop “out-thinking” him, he is usually on target. I’m going to up my dose, thank you. Why is Coral Calcium a waste of money? I thought calcium was good for the cancer fight. I guess the grape seed is good as an antioxidant. Any other thoughts on what else grape seed extract does? Thank you too Cindy and Heather. Your thoughts were noted. Diet also modified! I did a search on CoQ10 and see Heather also commented on CoQ10 in Feb. ’04. One of the things I saw about CoQ10 was large doses for a cancer fight, but they didn’t specify how much. . . ideas? Thank you all.

I’m trying to find medicines that might help in the cancer fight that are not heavy conventional types of chemo-therapy – I want to hold the conventional chemo-therapy in reserve for the day I really need it again. I’m currently taking the following hoping it might help prolong life: 1. Celebrex, 400 mg per day (COX 2 inhibitor – I don’t care about the heart risk). 2. Ranitidine (150 mg) occasional for heartburn (I heard that in a clinical study people taking this along with chemo had increased survival rates.) 3. Omega 3 Fish Oil – 8000 mg. each day 4. Centrum Silver multivitamin/multimineral – once a day. 5. Grape seed extract, 100 mg for antioxidant benefit – once a day 6. Melatonin – 3 mg. each night 7. Coral calcium – 200 mg. magnesium, 200 iu Vitamin D & 400 mg. calcium 1 per day. 8. Selenium – 200 mcg per day 9. Vitamin “A” – 8000 iu per day (1 tablet) 10. Vitamin “C” – 2000 mg per day cancer (2 1000 mg. per day) 11. Vitamin “E” – 400 iu per day 12. Vitamin B-6 – 100 mg. per day 13. Zink 100 mg. total (interferes with metabolism of calcium – take at different times) 14. Folic Acid – 800 mcg per day 15. Astragalus (Chinese herb) – (1@ morning & 1 @ night) builds immune system? Dietary: 1. Bolthouse Farms “Green Goodness” (fresh juice with bunch of good stuff) 1 - 2 glasses each day – not enough time to do the juicing thing. 2. Little raw sugar (use Steevia) 3. Lots of salads, fruits & vegetables 4. Green tea/herb tea during day (I also have a “Red Clover” and a “Paul D’Arco” tea that is inexpensive at the health food store almost everyday.) 5. Filtered & ionized water for drinking 6. My oncologist is into fitness and suggested I go on the Atkins diet (I need to loose about 20 pounds). I’ve cut out the carbohydrates but still get some in the green & leafy vegetables and fruit I "pig out" on. I’ve read in small limited studies using conventional western methods (except for the Astragalus grape seed extract and ionized water) where the above have been mentioned as maybe doing some good in the cancer battle. When I run out of the Astragalus and Grape seed extract, I’ll probably quit taking them. There are so many other unconventional things like extreme diets, IP-6, Artemisinin, CoQ-10, Curcumin, Beta Glucan, Wobenzym, Flor-Essence (improved Issiac tea?) etc. that I don’t know what I should do or if I should take any of these. I honestly wonder how many of these unconventional “medicines” are nothing but snake oil that are hyped up with poor unconventional studies. Some of these are “pricy” and I live on the poor side of town these days, but could probably add a couple of items if the money might be well spent. I know many of you have really delved into this stuff. Do you have any suggestions about conventional or unconventional drugs (supplements) that have a reasonable probability of contributing to our increased survival? I’m most interested in things that have had at least a limited western type study (or close to valid study) that an oncologist might give some credence to. I would really appreciate any and all comments (please no salesmen). Thank you!

With my last blood test, the doctor requested something new for me: Serum LDH level! Stands for lactic acid dehydrogenase. The reference was 90 to 200 IU/L for normal. Mine was a little high at 224. From what I can surmise, it is usually involved in cancer classification schemes & resulting survival statistics. A quick search at http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Books yielded the following highlights: 1) Elevated LDH is a less-specific cancer marker and is mainly a correlate of disease bulk. 2) LDH has been reported as a prognostic factor. In particular, high LDH identifies patients with a higher likelihood of metastases and late in therapy, is useful as a predictor of recurrent disease. Have some of your doctors been keeping track of LDH? Could you help me understand its significance? Thank you!

I did an advanced search on Google using: "Mag-3" "small cell lung cancer" and had links to several articles appear. Hope this helps.

Figured before I went for the recommended last line chemotherapy, I would look into thermal ablation. This non-invasive treatment amounted to a 1 day stay in the hospital. They used a CT scan to guide the needle and microwaves to ablate my adrenal met. I think the thermal ablation amounts to killing the tumor by heating it to 110 plus degrees. I left the hospital with a band aid on my back and felt better than I have in a couple of years. The adrenal met must have been causing most of my fatigue. When the doctor can figure out what is scar tissue and what is tumor, I may have the lung ablated also, if needed. I learned about this procedure on this website. The local oncologists didn’t seem to know much about the procedure. I did a web search for doctors offering this service and found a good experienced group in another city. They thought I was a good candidate and I jumped on it. The information I’ve been able to gather on this website has helped me make treatment decisions. To everyone who has helped make LCHelp.com possible, I give my deepest thanks and sincere appreciation. When I was first diagnosed, I was told I only had 6 months to 1 year! It has now been 15 months and I still feel good. I’ve reached outside the recommended treatments, and found new doctors when necessary because of the information on this site. My first oncologist said palliative treatment only. He did find a clinical trial when I asked him. The second oncologist said lets just observe after the chemotherapy in the clinical trial – this didn’t appeal to me. My third oncologist said he thought he could kill the stuff with radiation. When that didn’t work, my forth doctor (Oncologic & Throacic Surgery) thought ablation would help. Any ideas where I need to look for my next conventional treatment if ablation doesn’t work? Oh, a big thank you to all the posters who make this such a valuable resource site too!