CancerCompass message board discussion started by Carol R. on 8/13/2002 http://www.cancercompass.com/message-board/message/all,474,0.htm Thu, 21 Aug 2008 00:00:00 GMT Thu, 21 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My sister's cancer was determined to be ovarian. After complete removal of everything, the cancer has been located in a lymph node in her spine. Does anyone else have this and what treatment are you taking? She is on chemo, but after 7 months, they are still unable to get rid of this. Carol R. Tue, 13 Aug 2002 00:00:00 GMT I was treated for ovarian cancer a year and a half ago. I had a full hysterectomy due to a large ovarian cyst and they found cancer at that time. Since a lymph node was involved it was staged at 3C. Before surgery my CA-125 was about 125. After, it was down to 15. Then I did 6 rounds of taxol/carboplatin chemo. After the first round and ever since, my CA-125 has been below 10. So it appears that I am rid of it. I hope your sister can beat this too. Jo Etta H. Tue, 27 Aug 2002 00:00:00 GMT I am a 3 year surviror of Ovarian cancer. I have been on a lot of different chemo's. Now I am on Doxil. I had surgery in July of 1999,and since then have been on different chemo's. My ca-125 goes down to the 80's and then it starst to climb back up, so they put me on a different chemo. I was stage 3 class 3. I work 80 hrs in 2 weeks, Feel pretty good most of the time. I belong to a support group which has helped me get through this. Kay M. Fri, 30 Aug 2002 00:00:00 GMT I am a 2-1/2 year survivor of ovarian cancer (stage 3C with lymph node involvement). Was diagnosed in 4/2000. Had a complete hysterectomy and have been on chemo ever since. All of the chemos I have tried just don't seem to completely get rid of my cancer. However, they have decreased the residual, microscopic cancer and has kept everything stable. And this is a good thing, as far as I am concerned. They are always coming out with newer and better meds/treatments all the time. Some chemos make you feel not so well and others do not make you feel any different at all and allow you to go on with your daily life. I have continued to work through all of this. I firmly believe a big part of your recovery is your mind-set. For me, I AM a survivor! And, I believe I will get through this and become cancer-free one day! Good Luck to you and your sister!! Remember: Think positive!! Debbie B. Thu, 14 Nov 2002 00:00:00 GMT Hi Jo, I wish you continued success in your battle. Could please tell me the size of your cyst and what other symptoms you had when you first went to the Dr. Thank you, Shelly. Sammy Tue, 02 Sep 2003 00:00:00 GMT Wow! 3 years. Congrats! I had a complete hysterectomy done last Jan and they removed the omentum too. I had fluid in my lungs. My CA125 was at 1859 when I went in for surgery and after my 6th treatment of taxol & carboplatin it was down to 1.8! My last treatment was May 22 and when I went in on 9/11 for my check-up, they found nodules on my lungs. My CA125 is back up to 367. They want me on Doxil or Gemzar. I already have heart damage, sciatic nerve damage, neuropathy from the treatments before so am very leary about more chemo. They won't even let me go back to work yet and only give me a 5% chance to make it for a year. Wonder why so many are told different things and do the same treatments? Sounds like a puzzle to me. Keep the positive attitudes going!!! Prayers help too. I am glad you are doing so well with all of your treatments. Good Luck!!! Shel A. Tue, 23 Sep 2003 00:00:00 GMT I was diagnosed with Stage IIIC ovarian cancer, May 2001. Total abdominal hysterectomy, appendectomy, omentum removed, but thank God, no intestinal involvement. It was found in neighborhing lymph nodes. CA-125 was 3300 before surgery (yes, really). Had eight rounds of chemotherapy, including standard carboplatin/taxol, with Gemzar added, on a study I particpated in. Along with therapy, I took many supplements when I could afford the cost, and did some energy work (Reiki type). I never felt very sick from chemo, had few side effects, and terrific results! My CA-125 plummeted after surgery, and throughout treatment. A little while after completing treatment, my CA-125 was down to 4.7, and held around there until the end of 2003. It went up to around 8, then March 2004 was 18. To me, that said something might be going on. My oncologist actually told me I didn't need to come back for six months. On June 13, I found a lump under my right arm, which turned out to be an enlarged lymph node. It was removed, and the biopsy showed ovarian cancer cells. This is unusual for it to appear there, I was told. Ladies, please make sure you are doing regular breast exams, including under your arms. My oncologist never examined me there. After surgery, my CA-125 was 59 on July 6, and by July 27 it had risen to 79 (about 1 point a day, it seems). My CAT scan showed two tiny spots on my right lung, but the radiologist described them as "uncalcified looking", or something like that, and said I have hepatic cysts, which apparently many people have. Basically the summary stated that there is no clear evidence of disease, but that those areas should be watched. I should emphasize that I feel FANTASTIC, and that this is truly the best time of my life! I have NO physical complaints. I am a very holistic person, and have always felt in control over my cancer. I did not really detox and rebuild after my chemotherapy in 2001, mainly because of lack of funds. I have always wanted to. Now I have to do that immediately. I have already made a drastic change in my eating habits. I already ate mainly vegetarian, lowfat, but now am trying to implement a hardcore greens/alkaline/organic/juicing regimen, with the ideas of the Gerson Therapy (nutritional/metabolic therapy, designed in the 40's by Max Gerson, M.D.). Is anyone familiar with this? I want to do the therapy, but it's very expensive. You have to make a commitment to the diet and continue it for a long time, to really clean up your act. I know I could commit to that. The other diet that has shown to be very helpful in the success of treating ovarian cancer, is the Macrobiotic Diet. Especially for this type of cancer. I am now putting together a "team" of practioners, for my health mission. Holistic Internist (M.D.), a D.O. at a wellness clinic, a nutritionist, and I'm looking to find a new oncologist that will work well with them and me, and has a holistic mindset. I will also incorporate yoga, aerobic exercise, Reiki, meditation/affirmations/visualization, and other complimentary things. I have poured over and exhausted myself researching and learning on my own, especially lately. The best book overall that I have found is called "A Cancer Battle Plan", by Anne Frahm. It's relatively short, and is a summary of everything I've been learning about, and includes the plan the author used to reclaim her health. Go buy the book. It's not promoting one thing or the other specifically. It just stresses how getting well involves using several tools; the holistic approach, which only makes sense. It's a medium size paperback, available at many bookstores in the "disease" section. Also, is anyone familiar with the anti-cancer actions of Iscador (Mistletoe)? I have started taking injections of this. It's the #1 cancer treatment in Germany, so I read. It's been used for decades in Europe, and from studies, shows several anti-cancer actions against different cancers. I'm still collecting information. This was recommended by the D.O. at Foxhollow Wellness Clinic, in Louisville, KY. Also, Mistletoe seems to have a "grounding", mentally balancing effect. It seems to be true, as I have been in an amazing state of mind this week, since taking it! Of course, administering it to myself is very empowering. My oncologist wants me to start chemotherapy again, relatively soon; four rounds of the standard therapy, then repeat tests. I am very afraid of possible permanent damage to my organs, if I do that right away. I want to wait a couple or few weeks at least, while I start alternative therapies, to at the very least, detox, then start to rebuild my organs and especially my immune system. I'm very overwhelmed by all the information, and since I'm the patient, it's hard to tell what my intuition is with regard with what to do right now. I'm trying to get a "team" of friends to help me stay organized, and possibly to help get funds for treatment. I've been so obsessed with my CA-125 results, even though I've been told by my oncologist, and the doctor at Foxhollow, that the same value in two women, does not mean the same degree of disease. Only the scans show that. One even said that some doctors don't use the blood test to chart a course; that I shouldn't use that to control my course, or decide things for me. I'm not exactly sure what to do. What I have to focus on, is the fact that I actually feel physically better, and have more going for me, than ever before in my life!! So, do I decide based on that, and use a repeat scan in about a month? Has anyone had similar experiences? I want to hear what your experiences and thoughts are, with regard to what I have said here, and what my way of thinking is. This is the first time in the past week, that I have decided I need to start having dialogue with other ovarian cancer survivors. My first support group experience in 2001, was depressing. Now I need to find the right support network. It's a part of my recovery. Helping others is even part of that. I have to share what I've learned, and what I believe in. Not only am I on a mission to restore my health, and be cancer-free, but I want to share my attitude and maybe help save other's lives also. I believe that we're meant to share helpful information and resources. This is probably the longest message anyone has ever typed on here. I am very serious and passionate, and actually excited about the job ahead of me, and am naturally very expressive. God Bless all of you, best of luck, and my prayers to all of you. I look forward to getting to know many of you, and us all helping each other. Sending Good Thoughts, Joli Joli d. Fri, 06 Aug 2004 00:00:00 GMT Hi there I read your story. I am interested in getting my body in shape to ward off cancer. I am not very organized and not wealthy like most of us. I know that I have to eat properly and exercise to start. I have weight that I need to lose along with getting healthy so I can prevent getting cancer again. Hope we can chat. I am not sure how we get messages to each other unless we visit this subject every time. If you know of a differnt way please let me know. Marlane Marlane B. Tue, 19 Oct 2004 00:00:00 GMT Hi: I guess you saw my post on Cancer Compass? I had a lymph node removed from under my arm 7/1/04, that had ovarian cancer cells within it. Since then, I have received a couple of months of treatment at Foxhollow Clinic, in Crestwood, KY (Louisville, KY). See their website at Foxhollow.com I think it is. OR search for "Foxhollow", and you should find it. They practice Biological Medicine, and treat many cancer patients. Some people do their treatments and conventional, or their treatments alone, or do conventional, then Biological medicine. People come from all over the world to Foxhollow. It's a holistic approach, with the goal to identify and correct underlying conditions, to create the best possible environment for a person's body to fight off disease as our bodies should be able to do, and/or to maintain health, and prevent future problems. You'd have to check it out to see if there's anything you think your sister would benefit from. I am also consulting with a new oncologist in Louisville, that is customizing the best treatment plan for me, to get my tumor marker down again. He knows of many treatment options, mostly conventional, but tries to get as many details as possible about the specific patient, so as to prescribe the best treatment. Do a search on the web, with the words "ovarian cancer experts", or something to that effect, and you should get information on the medical centers and doctors with the most cutting edge and up to date effective treatments for that particular condition. I think this website is sponsored by Cancer Treatment Centers of America, so I'm not sure if they want people listing specific facilities on here. Also, please find the book, "A Cancer Battle Plan", by Anne Frahm, and "The Path of Practice", A Woman's Book of Healing Through Food, Breath and Sound. You can find in on Amazon.com. Depending on the mindset of your sister, they could be of great benefit. I feel the duty to share information I have learned, and hope I can help many others. Good Luck, and I am praying for your sister. Sincerely, Jolene Joli d. Tue, 19 Oct 2004 00:00:00 GMT I am going to repeat a message I posted in another section here, so that you know my story as well. But before that, here are the books I read: A woman's guide to healing from breast cancer by Nan Lu. Battle cancer with nutrition by Patrick Quillin. love, medicine and miracles by Bernie Siegel, Spontaneous Healing by Andrew Weil, A healer within, by Roger Jahnke. Here is the other mail I wrote.... I read about Raspberry and Ellagic acid. Raspberry is not easily available in Singapore, but Pomegranates are. I took quite a lot of them when I first read about the research on Ellagic acid. I also feel that besides raspberry, other berries are equally helpful, including bilberries, blueberries. All kinds of food and vegetables can help us to boost our immune system. I have singled out the following to help me to stay healthy - garlic and onions, eaten both cooked and raw, soy products, cabbabge, broccoli, cauliflower, carrots, celery, dandelion (in supplements), flax seeds, whole wheat bread (if I eat any), dill, cinnamon, sunflower seeds, sesame seeds, almonds, walnuts, lettuce, green vegetables, apples, tomatoes (both raw and cooked as a sauce), basil, seafood, small portions of other meat and eggs. I seldom take dairy products. For supplelments I take B complex with magnesium and zinc, Vit. E, calcium, and a multi. I was overweight when diagnosed. I was 131 lbs and I am only 5ft tall. Since my diagnosis in May 2001, I have lost 12lbs. I found that when I take care of my nutrition, I eat less and am not hungry all the time like when I was into junk food, cola drinks, white bread, cookies, etc. I also work out on the treadmill - not pushing, just being comfortable, otherwise I will view it as a torture. I am still practicing my qigong - chilel.com It has been more than 3 years since my diagnosis. There are times when I think the cancer is back, ( bad digestion, headache, twitches, any aches and pain) and I will feel down. Then I will pick up a book on nutrition to read and realise I am doing all the right things and I will feel comforted and the feeling of fear will pass. I feel that doing things for ourselves daily is important - may it be deep breathing, self-massage while watching tv, a few minutes of quiet comtemplation, slow tai-chi like movements will waiting for the water to boil, while standing in line at the bank, etc. I believe my body had been neglected since I was a teen. It will take quite a few years to reverse the harm I have done to it. While under repair, I will experience healing crisis. I will feel off on certain days, when toxics are discharged. All I need to do is to continue with my healthy lifestyle. That is what I believe. Joanna C. Thu, 28 Oct 2004 00:00:00 GMT Hi. I highly suggest visiting this website (www.ncrf.org/). I know this man personally, as I live close by him and have met with him several times. I have started following his regimen 2 weeks ago, as I was recently diagnosed with ovarian/ peritoneal cancer. Although it was a minimal amount, my CA-125 already went down from 2 weeks ago. I can assure you that he is not a quack, but the real thing. He himself had pancreatic cancer and cured himself of it, which is virtually unheard of. Check out his website and you can see the testimonials, which includes irrefutable before/after labwork, PET scans, etc. from people who have followed his plan and have had very positive results. No chemo, no radiation, no surgery--in fact, some people do those traditional treatments and follow his program at the same time, but he typically sees better results from those who do not partake in those treatments. His formula is all natural--no drugs or chemicals. It comes in either powder for a shake or pills and can be found at www.cellect.org/. I know most will think this is a hoax or that this guy is a quack. I might have thought so myself if I hadn't met him and his wife, plus spoken to several people who have followed his regimen and experienced extremely good results!!! He charges for the powder/pills, but he sells them at cost. He is not in this for the money, but rather because it is personal for him (his sister died of cancer) and he is just an extremely compassionate, kind, and caring person who has been where we are--having both had cancer as well as having had a family member who had cancer. In fact, when I met with him the first time, he spoke with me for three hours (no fee) and I have met with him twice after that for at least an hour each time (no fee). On another three separate occasions, I was on the phone with him for a total of about 5 hours altogether discussing my lab reports or my symptoms, questions I had, etc. (of course, no fee). What doctor can you ever get on the phone at all, let alone for 5 minutes!!! Try it! Go to the website and read for yourself. All of you reading this should check it out--after all, what have you got to lose??!! What he says makes absolute sense. Traditional treatments will always be there if you want to use them. This, however, offers more hope and promise than those treatments, as far as I am concerned, and, in addition, does not have side effects nor does it have any possible devastating consequences. I promise if you call him, he (or his wife) will call you back. It may take them a bit of time (3-5 days), but they will call. Remember it is just the two of them running the show and they are unbelievably busy. I look at it like this...once upon a time, the world was thought to be flat. Those who challenged that were thought to be silly, foolish, crazy...and look how that turned out. I don't believe surgery or especially chemo and radiation are the answer to cancer. Those treatments typically make little sense and often cause more harm than good. Just because it is the "accepted mainstream" treatment doesn't mean it's the best or that it is the right one. Perhaps once upon the future, we or someone else will look back and say, "remember when they used to do chemotherapy and radiation to treat cancer...what were they thinking???!!!" Good Luck to you! Lynda Toyz4teddy Thu, 31 Mar 2005 00:00:00 GMT Hi, my name is Renee and I am 12 years old. I would like to support a child with leukemia. Leeaaron Wed, 29 Jun 2005 00:00:00 GMT