CancerCompass message board discussion started by Shel A. on 9/21/2003 http://www.cancercompass.com/message-board/message/all,941,0.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/ I was diagnosed last Jan with stage 4 ovarian cancer that had spread to the lungs. They removed 6 liters of fluid from abdomen & lungs. I was on taxol & carboplatin till May 22. I have neuropathy in hand and both feet. Sciatic nerve damage & heart problems. I had a echo done and saw the cardiologist. I have leaky valves, fluid around the heart. I will have another echo done in a couple weeks to compare. I had a CT scan done at my check-up last week and they found nodules back on my lungs that I had had before and they supposedly went away and are now back. My thought is that they never went away to begin with but now they want me to do chemo again. Suggest Doxil or Gemzar. I am seriously thinking of an alternative medicine. Went to a Greek treatment seminar yesterday and it sounds pretty good. Of course, my gyn. onc. does not give me much of a survival rating. I am only 43 so feel I should have lots of years left. Is there anyone who is in my same boat or similar that would like to respond to this or know of someone that might be able to give me any advice? Shel A. Sun, 21 Sep 2003 00:00:00 GMT Hi there, Whether you continue with chemo or not, it is always good to look into alternative, or in this case, complimentary. Start with this book: Beating cancer with nutrition by Patrick Quillin. There are many good books out there... do a search on Amazon. Read, and try out a few of their suggestions. All the best, Joanna Joanna C. Mon, 22 Sep 2003 00:00:00 GMT Thanks. I will do that. Do you have cancer too? I bought a book at the seminar. It is really quite interesting. It tells about the foods you should eat too. I also bought a cookbook fom them. Have any of you heard about the Alivizatos treatment? Know of anyone that has? Thanks again. Shel A. Mon, 22 Sep 2003 00:00:00 GMT Yes, I was diagnosed with Stage 3 Ovarian cancer in May 2001. No, I have heard of Alivizatos treatment. Can you share that with us? According to research there are so many kinds of food that may benefit cancer patients, and I for one don't see any harm in trying them out. If you can list out 10 of the recommended food, I will do the same. Just reading a book can help cancer patients.. how? By taking our minds off the cancer. I read that somewhere. So read, and put what you read into practice... hope to hear from you again... Joanna Joanna C. Tue, 23 Sep 2003 00:00:00 GMT As far as I am concerned, you are right on track. I would suggest including some form of exercise as well: walking is a good one. Add some self-massage, deep breathing and stretches.. you can do them while watching tv or just before bedtime. Thanks for sharing, and do post from time to time to let us know how you are doing. Hugs, Joanna Joanna C. Tue, 23 Sep 2003 00:00:00 GMT I was diagnosed with Stage IIIC Fallopian Tube Cancer last year, and just this year, after my first failed chemo therapy - Taxol/Carbo - also discovered the book mentioned by Patrick Quillin. It's excellent and I've made a radical diet change incorporating all he suggests. Especially, eliminating ALL SUGAR!! His theory about sugar is that it is a cancer feeder. Eliminating all sugar was not only an daunting task, as you must read every label, it's everywhere, but so-o-o-o difficult if you love it as I did. My second round of chemo - Taxotere - taken after beginning Quillin's nutrition plan last March and beginning his suggestion of the Immunopower vitamin supplementation, was very tolerable. I did not experience fatigue or any nausea, and to the surprise of my doc, no hair loss!! I even believe that the diet change and the vitamins contributed to my quick comeback after recent surgery for two additional tumors (overlooked during the first surgery). I was supposed to be in the hospital for one to two weeks and was released the morning of the 4th day after surgery!! Can't say enough positive about Quillin's ideas for building your immune system by diet change, vitamin supplements and exercise. I like the idea that he isn't saying to heck with traditional medicine, just that at the same time it's imperative that we who have cancer build our immune system to counteract chemo's apparent tearing down of our immune system. My additional "recipe" for beating this cancer is a strong faith in the God of hope.....our Lord Jesus Christ..! I'm confident I could not have made it this far without Him. My thoughts and prayers are with all who've been diagnosed with cancer of any kind. Warmest regards, Sandy L.L. Sandy L. Sat, 04 Oct 2003 00:00:00 GMT Dear Shel, I too was originally not given very good stats for beating this cancer, and determined to find another Gyn oncol. who was more positive about getting me into remission. I went for 5, yes 5, 2nd opinions and found Dr. Beth Karlan at Cedars-Sinai Comprehensive Cancer Center in L.A. met my every need!!! All other Docs had great credentials and were from great hospitals, UCLA, UCI, UCSan Diego etc. but insisted on looking at the doom and gloom statistics. I wasn't interested in these, and searched til I found a Dr. that thought like I did. I liked her attitude and her positive determination that she would do everything to get me in remission. My kind of Doc, and I highly recommend that you search until you find a doctor that thinks outside of the box and doesn't put you into those statistics. No Doctor has the right to play God.... there is only one God of the universe and He alone is responsible for the number of days we've been given in this life. My prayers are with you. Sandy L.L. Sandy L. Sat, 04 Oct 2003 00:00:00 GMT Thanks for your thoughts. I am glad you are all doing so well. I have ordered the book which should be here sny day now, and I also ordered others that I am reading. Alot of them talk about cutting out the sugars. They say about the red meat and dairy products too. Even buying eggs from farmer than in a store or any processed foods. What can you eat? What vitamins & minerals do you take? I am a member of curves and try to stay active so don't think I have a problem with excercise. The diet will be the hardest. How do you do it? I love my milk & cheese. Of course, I live in Wisconsin. I am also a meat lover. It is about my only craving. Can you guys give me an idea of what to make for meals in a week and snacks? Do you drink only water and juice? One book I am reading now says about cleansing out the body with coffee enemas and drinking water & juices for a given number of days before doing anything else. Did you do that? As you can tell, I am dumbfounded when it comes to this sort of thing. I need help to do it I think. I go in tomorrow for my other echo and will see the cardiologist on Tuesday and my Dr. up here on Thursday. I have my appointment with my gyn.ono. in the cities on Nov. 3. My Dr. here says not to wait that long so will have him refer me to Mayo for another opinion and maybe to the U of M? I need to get better!!! I would feel fine now except for the neuropathy. Did either of you experience that? It is awful!!! I like to hear what the stats are just to give me a goal and something to shoot for to see if I can break the pattern. I want to make good stats! What I like most is to hear real stories from people like you who are going thru alot of the same thing. Anyone with cancer is a big help for me. I can learn from them and they understand some or all of what I am going thru. Some are worse than me and some better. I just love the true stories. I have a big family. 6 sisters and my father that are supporting me thru all of this along with nieces & nephews,cousins, etc. My husband & daughter are really scared. I love spending the time with my 6 yr. old grandson. My mother died of cancer back in 1982. I don't want to also. Her Dr. said back then that 1 out of 7 would get it and I am the middle one of 7 and my birth sign is cancer. Go figure. I am really anxious to hear more from anyone. Please keep the info coming. I love to hear it. Keep the positive attitudes. My prayers are with you all!!!! Shel Shel A. Sun, 05 Oct 2003 00:00:00 GMT Hi, I did not see any responses to your last letter of 03 and wanted to see how you are doing? I was diagnoised with OVCA stage 3 last September and after surgery and 6 rounds of chemo (carbo-taxol) I have been luckily cancer free since 2/04. Still worry everytime a checkup is coming up which will be end of this month. Please let us know how you are and what has happened in your life since you last posted. Joan S. Fri, 13 Aug 2004 00:00:00 GMT I am sorry it has taken me so long to get back here. Life has been really hectic lately. Daughters wedding and husband getting burnt and in the burn unit, almost loosing son in law twice and me going thru chemo again. I had chemo of carbo and taxotere. My Ca125 went back down. My last treatment was the beginning of June. I went back for my checkup and it is again starting to rise. She (gyn/onc) has now given up on me. I really would like to try something else that may work. I had a chat session with someone from CTCA and it sounded really hopeful but I did not get any of the information she was going to send out to me. I wanted to get in touch with someone that has gone there and see if it had done them any good with stage 4 but never got the list for that either. They said that my insurance will not cover it but I feel that if I get a referral from my Dr. here, it would work. He is the only one I have left. He is a family practice Dr. A girlfriend of mine who was an RN in Seattle said that alot of places don't like to mess with stage 4 ovarian cancer patients and I am getting that feeling also. She also has said that if it were her, she would go to the Cancer Care Alliance. If all that either of them would do is exercises and diet, I can do that here at home. I am just so confused and don't know where to turn anymore. I just wish someone out there would help me steer in the right direction. Not sure what else you want to know or what kind of questions you may have. Just ask and I will try to answer. Hope you all take care. Shel Shel A. Tue, 07 Sep 2004 00:00:00 GMT Hello Shel, it was good to hear from you but very sad about the news on your husband and son-in-law, chemo again, and especially about your doctor (gyn/onc) giving up on you. You need another doctor. And I am sure there is one out there who can work with you on your other options. Here is an organization that I subscribe to online, http://www.acor.org/ When you get to this website, in the middle of the screen is a list for online communications, support, clinical trials, etc. I joined the online discussion group for Ovarian Cancer and there are daily posts that are emailed to you with other women going through the same issues we have and I know there are thousands of us who read everyday and at least one of those sisters will have a positive and important contact for you and your situation. Here is the final link to signing up: copy and paste this: and you can sign up directly to talk to many of the other ladies with this cancer. http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=ovarian&A=1 I am praying for you every day and hope you will find some answers. There are always treatments out there and I know one is there for you...never give up, never lose hope. I also pray that your family is on the road to recovery from their pain. Your life has been overflowing with challenges, I hope you can find some peace and goodness in between the struggles. Sincerely, JoanMarie Joan S. Fri, 10 Sep 2004 00:00:00 GMT I will have to look into that. I did copy and paste it to an email to myself for right now. Have lots to do today so maybe get to it tonight or tomorrow. Right now, I am busy getting plans ready to fly out to Phoenix. We have a brother in law that has stage 4 colon cancer and isn't doing well at all. They are not giving him much time left and he has hospice care now too. I tell ya, if it isn't one thing, it is another. The 25th, we are going to have our family pictures done. We didn't have any at my daughters wedding so we are renting the tuxes again and having the flowers done all over and my daughters hair done the way that it was the day of her wedding. We will have pictures done both at the church and in our back yard by the ponds, just like they did for the wedding day. My husband is all cleared from the burns and my hair is starting to grow back, my son in law is between surgeries and so the 25th is a good day. Hopefully the weather will cooperate and nothing else will go wrong. Sure has been a challenge around here lately. Enough about my busy life, I would really love to hear about all of yours and how you all are doing. Please write! Good luck to all of you!!! Hope all are well!!! Shel Shel A. Sun, 12 Sep 2004 00:00:00 GMT Dear Shela, You are probably now in Arizona with your Brother-in-law, and I am sure he is so glad for your visit and support. Hospice is a wonderful group of caring people, I don't know what we ever did without them. They helped my dad through his last days, relieved him of the pain. They told me that he probably had bone cancer, which the doctors had never diagnoised. It wasn't until I got Cancer that I realized how MANY of us are out there suffering through the same issues and heartaches, pain and worry. A close friend of mine called and asked me to talk to his 47 year old daughter who was diagnoised with stage 3 Ovarian recently and is getting ready to start her chemo sessions. She is quite anxious. I hope she'll let me come visit as they only live a couple of hours away from me. The family portraits sound lovely. I had tried to get my daughter to recreate her highschool graduation so WE could have "real" pictures but she keeps saying it is too late. You've given me an inspriation and I think I will line her and my son and I up for a group photo done professionally. Now that my hair has come back, it would be very nice to have. You asked how I am doing...amazed at feeling so good! I am almost to my 1 year with no sign of a reoccurrance. In the very beginning, I didn't even think I would survive surgery. It is a blessing and I am trying to think positively that the cancer won't return. That is a very hard task as every twinge I feel becomes a significant worry. All tests are negative, have rescheduled my CAT scan for 10-20. My children are doing good. My son started his last year of high school and is bidding farewell to his girlfriend as she is heading off to college. My daughter found a great job to see her through her second year of college/housing expenses. Living alone now is my hardest hurdle. The empty nest syndrome takes lots of getting used to. I spend a lot of time online and talking to others like us. It helps. I have wondered what area of the country you are in? I'm in northern CA, about 1.5 hours north of San Francisco. Great to talk to you and hope you are finding some help with getting treatments going again. Big hugs, Joan Joan S. Sat, 18 Sep 2004 00:00:00 GMT Hi, My name is Amy. I was diagnosed with stage 4 ovarian cancer in 97. I had the hysterectomy then chemo for 6 months carbo/taxol. It seemed to work and I was in remission for almost 5 years. It came back as a colorectal tumor that cannot be operated on. All the while my ca-125 count is in the normal range. I did another round of chemo and then some radiation...nothing helped. They decided that since my "lifestyle" was not being hurt so they let me go. Now I have 4 more tumors in my abdomen. I can feel them. I contacted CTCA and have an appointment with them November 8th. They gave me hope when I spoke to them. And as you know, hope is very important. I will let you know how things go there. I am very very hopeful. Much Luck to you!! Amy Amyhashope Wed, 13 Oct 2004 00:00:00 GMT Hi Joan. Sorry it has taken me so long to get back to you. I went to AZ and spent a few really nice days with my brother in law. He passed away a few weeks after we came home. Really sad but was glad to have the opportunity to spend time with him. I have been trying to get alot of things done and back and forth to Mayo. I live in WI but close to the MN border. If you are ever in the area, look me up or let me know. I would love to get together. As you know, I was done with my 2nd round of chemo treatments in June. I am now taking tamoxifen and it is not helping either. My CA125 is going quite rapid. I have been feeling worse and went in last week for another one. CA125 went from 78.3 in October to 291.0 in November. I am afraid there is nothing else that can be done. Did you ever contact that 47 year old and meet with her? How did that go? Did you ever get your family pictures done? I am sure you would cherish those forever! Hope you still have not had a recurrence? I did join the ACOR list like you talked about but have not posted on their yet. Not sure on what to do, I guess. I have to do that soon. I like how the emails come in my box so I can just read them. I have written to just Sandy P about something and she said about getting in there and telling my story. Just haven't taken time to do that yet. How did your last CT scan turn out? Kids still doing great? You say about living alone, sometimes I think about how nice it may be. Can get more things done and at my own pace instead of worring about others. If I was in that situation, I may not like that either though. I will try to stay in better contact with you. It may be easier on the other site or you can sure email me whenever you want. Keep up the positive attitude!!! It does help!!! Talk to you soon!!! Shel Shel A. Tue, 30 Nov 2004 00:00:00 GMT First off, I would like to congratulate you on making it for almost 5 years!!! That is one thing to really celebrate!!! Most of us would do anything to be in your shoes! As I am sure you read, my CA125 won't stay down and I feel just terrible. What happened with your appointment on the 8th? Did your insurance cover it and are they doing anything for you? I contacted them and they have not gotten back to me. My insurance supposedly did not cover it so they didn't bother. As far as I can tell, it could be my last hope. I would have to have the insurance cover it though cuz I can't afford it. Keep me posted as to what is going on and let me know how your doing! Keep the positive attitude!!! Love, Shel Shel A. Tue, 30 Nov 2004 00:00:00 GMT Hi Shel A, So very good to hear from you...Have been worried. I am sorry to hear about your brother-in-law. I know he is at peace but sure that his family misses him. I really hate this disease! It has kept it's distance from me since my treatment, CA125 is still <2 and CT scan is clear. But I feel so much sadness for everyone who is having recurrence and problems with their doctors or with their treatments. Life is not fair, not even close. I have kept in touch with my friend's daughter, the 47 year old with Stage 3 OVCA. She just had her 4th carbo-taxol and is doing well. Her spirits are up. Hey, isn't SandyP a kick? She must spend hours researching the latest treatments and trials to give us all those updates so often. I am glad you joined. I have only written to the list once and never got a response. I just listen and read. Have learned some interesting and useful information along the way...said good bye to a few wonderful women and am amazed at so many others who seem to have so much strength and courage. The family photos are coming for Christmas, I am hoping anyhow! I have a couple of nephews living in MI~ would love to get back there for a visit and stop by to see you...maybe someday huh? Wishful thinking. Just making ends meet is a challenge. Please take care of yourself and write to me whenever you want. Joan S. Mon, 06 Dec 2004 00:00:00 GMT Sorry it has taken me so long to respond. My insurance did cover the treatment center. And I'm very lucky that I went to a place that was prepared to do what had to be done. I was scheduled for a colonoscopy and got extreemly sick off the prep. It turns out that I had 2 major blockages in the large intestine...I had emergency surgery and came out with an ostomy. My road hasn't been a pleasent one, but at least I'm still on it!! I'm sorry to hear that your insurance won't cover this hospital. It was great. All the people there are wonderful and they cover so many areas of life. Not just treatment, but treatment for the side effects including depression, etc. It was a wonderful place to be in after all the negativity I got at home. I have decided, however, that I will allow my home doc to take care of my treatments. It's just too much on me right now to be flying back and forth to Illinois. I hope all is well with you!! Amy Amyhashope Tue, 07 Dec 2004 00:00:00 GMT Joan Glad that things are going great with you! Hope they still are!!! I spent the last week in the hospital trying to get my body back to normal. I was given the choice of living with pain and no constipation or nausea or else living without pain and having constipation and nausea. Of course, I chose to live with pain. Have had some pain for 2 years so why not more? I think that will be easier to adjust to than the constipation and nausea. The cancer is starting to take over more. I am on doxil now and my CA125 is up to 1294.8. I just can't seem to have much time off chemo. Not sure what I am doing wrong if anything. They drained 5 liters off my abdomen while I was in the hospital that the chemo isn't taking care of and it fills up as fast as they can drain it. We switched some of my meds around. Dropped some and added others. Enough about that. I am planning on a trip to MX. My sister lives near Manzanillo every winter and has wanted Ron & I to go there so we are now planning on going the 8th of March. Will stay for 1 week. Should be fun.Glad that you decided for the family pictures. Your family will all be glad it was done. If you ever do get this way, please, look me up!! My email is andrie@spacestar.net and don't hesitate to write to me off this site. I seem to answer those emails to me sooner than this. Normally within a few days if not the same day. Sandy P is great! I don't know how she can spend that much time but she sure seems to know her stuff. I met another lady off that site and we email back and forth all the time. Have alot in common! It is great!!! That site sure has alot to offer. Soooo much info! I felt the loss in Oby too although I didn't even know her. There sure has been alot of them lately. Keep me posted as to how you are doing and I will try to do the same. Think of you often! Go ahead and email me individually! God Bless & Happy thoughts! Shel Shel A. Thu, 03 Feb 2005 00:00:00 GMT Nice to hear from you Amy! Glad that things went welll with your visit. How or why did you get sick from the prep? What did they use? What is an ostomy? Is that like a colostomy bag? Is it a permanent thing? How are you doing now? Have you found a good Dr. at home to take care of your situation? If you were to decide to go back there, would you have the smae Dr. or how would that work now? Are you in remission? I know, all these questions! Just tell me to be quiet! See, for me to go to Ill. it is about 10 or so hours away so not that bad. I wouldn't drive there all the time for treatment either but for my major check ups I would. As I am sure you read in the note I wrote to Joan, my CA125 is back up to 1294.8 so am back on chemo again for the 4th time in 2 years! Spent a week in the hospital and trying to find a new comfort zone. Keep me posted as to how you are doing! Looking forward to hearing from you! Shel Shel A. Thu, 03 Feb 2005 00:00:00 GMT Hi Shel A, Just checking in with you...did you get my overly long letter on the 6th in answer to yours on cancer compass? You included your email address so I sent it that way. Please let me know how you are. I have been worried when I have not heard back from you. Hugs and Prayers for you..., Love, Joan Joan S. Sat, 19 Feb 2005 00:00:00 GMT Hi Joan and the rest of you! Didn't you get my reply? I did write a long note back to you on the email you sent off this group. Hope you got it. I have not heard back from you since. I hope things are ok. Please let me know! I am concerned. To let you know what is going on, I went to the hospital yesterday and they removed 4 liters of fluid off my abdomen. Dr. said it is making its own pockets and would have to poke me alot of times to try to get to all of them. They will just use whichever has the most fluid in it each time I go in to have it done. They figure it may be a monthly thing. I have lost 49 pounds since the end of December but at least I can finally keep most things down. The only thing I have a problem with is apples. I throw up every time I eat one. Not sure what the deal is with that and my Drs have never heard of that happening before. I have tried different kinds so it isn't that. I have been pretty sick and Dr. feels that since I have now quit chemo, things may progress faster. I am going to be tested in April to see if I qualify to be on this new study that Mayo is doing. It has something to do with Measles vaccine. Can fill you in more when I know more. We are leaving for MX on Tuesday. Will leave here Monday and spend the night in a motel in the cities so we can leave our car parked there. Will be back the following Tuesday night. Hoping things go well so I can have some fun!!! Am really looking forward to the warm weather!!! Keep me posted as to what is going on with you guys! Amy, what is the newest? Take care and think of you all often!!! Shel Shel A. Sat, 05 Mar 2005 00:00:00 GMT i have been fight this divel for 6yrs now this yr seams to have been the hards for me because of the water build up in my stomach and around my lung the first time thay took about 15 pound for me it was 5 1/2 of the bottles i have it done 6 time now twices on my lung i realy dont like it to bee done from my lung because of the cought and lose my breath scare me it unpleasent any you go iam try to fine someone thats had this problems and if there is a fix if you like email 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 locate in tx how you are doning better and can enjoy christmas and the new year hope 2006 help all thet fight cancer or any illness GOD BLESS IS ALL Milgro98 Sun, 18 Dec 2005 00:00:00 GMT I had surgery for ovarian cancer 5/05/95 which was diagnosed early stage 1A. Had 4 round of chemo (carbo-taxol) and was in remission for almost 8 years. In Dec. 2002 I felt a hard mass near my neck (clavicular)which was found cancerous. Also CT scan showed enlarged lymph nodes near the aorta at my back, OCA 125 is around 20. Had 6 rounds of Carbo-taxol in early 2003 again which took care of the enlarged lymph nodes but hard lump at my neck did not go away. Had radiation in Nov-Dec. 2003 for my neck lump and lump disappeared. However, my OCA 125 stayed above 20 although my CT scan was fine in 2004. In Oct. 2005 my CT scan again showed enlarged lymph nodes, the same ones found in Dec. 2002. My OCA125 is about 21. My oncologist ordered 4 cycle treatment with carbo-gemcitabine, + epo (to build up my hematocrit) from Nov to Jan. 2006. My OCA was 11.5 last Jan. 2006 and my CT scan looked fine.I am now done with chemo but would like to know if there is anything out there, nutrition-wise that I can take to keep or maintain my present condition. The lymph nodes are still there but under control. Flora Flora Mon, 27 Mar 2006 00:00:00 GMT