CancerCompass message board discussion started by Jan T. on 6/21/2003 http://www.cancercompass.com/message-board/message/all,711,0.htm Sun, 12 Oct 2008 00:00:00 GMT Sun, 12 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi, My name is Jan and I am an ovarian cancer survivor of 7 years now stage 4. Glad to be here. Are there any gals here dealing with ovarian cancer? Wishing you well and hope to hear from you. Or anyone struggling with their cancer. Be well......Jan Jan T. Sat, 21 Jun 2003 00:00:00 GMT Hi Jan, I am now into my second year. How do you do it? Is it pure luck, or are you doing something right? Tell us your story, please. Rgds, Jo Joanna C. Sun, 22 Jun 2003 00:00:00 GMT Hi Jo, Jan here. Good to hear from you my friend. Well kiddo, I don't know what to tell you except to just get through your treatment and keep up with your follow up exams and all that. Do eat as healthy as you can. Take at least the basic supplements to keep your immune system up. I know I struggled a lot with it all as the doctors had told me I really only had a few months but with the chemo working and my body seemingly responding quite well I beat the odds so to speak. I wish there were a magic pill for us all that would banish cancer forever but there isn't. So we must keep the awareness alive for all women and help fight for a cure. I am just at seven years now and have not had a recurrence as of yet. It's a tough old road but we have to be tough as well. Emotions run crazy don't they? They did for me and still do at times. Be well and hope to hear from you soon...Jan Jan T. Sun, 22 Jun 2003 00:00:00 GMT Whatever you are doing, keep doing it. Thanks for the inspiration. Take care, Jo Joanna C. Sun, 22 Jun 2003 00:00:00 GMT Hi Jan, Just read your message. Nice to hear you are a 7 yr survivor. I am a 1yr., 3 month survivor. Almost every time I say that I have ovarian cancer, I get that look of sympathy, I'm sure the thought is, (she has the killer cancer.) Even a cousin who is a Dr. had the same reaction. Hard to keep up the fight when everyone seems to think this is one that you don't beat. You have done it and that gives me a lot more hope. I am planning on being around for a long time yet. Have 9 grandkids that I have to spoil! Thanks for the boost. Take care, Minnie minnie p. Wed, 25 Jun 2003 00:00:00 GMT Hi Minnie, Jan here. I know how all that negative stuff can make you feel because I felt that way for a long time myself. Ovarian cancer can be over come and I should know and there are others. So keep the faith my friend. And guess what? Speaking of grand kids...I am about to be a great grandma anytime now. We know it is a boy and she is due now! I can't believe I am going to be a great grandma. Where does the time go??????? I was married very young. [barely 16] Had one son and then two grand kids, a boy and a girl. Lindsay is 22 and Josh is 24. Josh and his girlfriend are the ones that will be having the baby. No marriage there yet but I am hoping. Young people today...I don't know but I will hope for the best. Keep you posted. Be well and always think good thoughts Minnie...hugs, Jan Jan T. Wed, 25 Jun 2003 00:00:00 GMT Hi Jan, Thanks for writing back. I am happy for you about your up coming greatgrand child. Babies are so much fun. My grandkids range from age 18 yrs down to 9 months. 5 girls and 4 boys. I had 4 children, 2 boys, 2 girls, our oldest son was killed in a car accident at 19 yrs of age, that was in 1979. I survived that so I'm sure I can win this battle also. Especially with people like yourself helping. I thank you for responding to my letter. Take care, Minnie minnie p. Thu, 26 Jun 2003 00:00:00 GMT Hi, Jan. I'm an ovarian cancer survivor, too. In fact, I just celebrated my 3rd birthday. It was 3 years ago on 7/14 that the doctor told me that I had ovarian cancer, Stage III, and I'm still here. Apparently God still has plans for me! I've had two reoccurrences: 1st one 01/02, 2nd one 08/02 -- and since 08/02 I've been on Topotecan (every 3rd week I get 5 days of Topotecan). Thank God, the treatment only lasts a 1/2 hour and there are very few after affects -- except for being tired. About 5 months ago I started getting a shot of Procrit every week ($1,825 per shot) and about two months ago, after each Topotecan treatment, I get a shot of Neulasta ($5,000 per shot). Thank God for Medicare and my medi-gap policy!!! I mean, every month they cover approximately $39,000.00 in costs! Can you believe that? I'd love to hear from you. In fact, I just wrote an 'open' letter to women with ovarian cancer, asking them if they'd like to start some kind of an online support group. Would you be interested in something like that? Let me know. Hang in there, kiddo! With love, Oby T. Naperville, IL Oby T. Wed, 23 Jul 2003 00:00:00 GMT Hi. So glad to hear of a 7-year survivor in stage 4. I have just moved (and my e-mail address will be changing) and have a new doctor who spoke so encouragingly about longevity. I was wondering if he was just building my hopes or if statistics are changing. I am 51 and have been on chemotherapy for over 2 years (diagnosed in 2001 with metastisis to the liver). I just got over a serious reaction to Doxil and have tried 3 other treatments, but my CA125 keeps rising. Am interested in hearing your treatment experiences. Doris M. Mon, 04 Aug 2003 00:00:00 GMT Was glad to hear your remarks about Medicare. My long-term disability has been paying for my insurance premiums, but that will cease on October 1, when Medicare kicks in. I was a little worried about what they will cover. Thanks for the input. Doris Doris M. Mon, 04 Aug 2003 00:00:00 GMT Hi, Thanks for your input on metastatic liver cancer. I was told I had a breast cancer metastasis that had spread to my liver, also stage 4. i was told October 2002. I am on Femara and so far it seems to be responding well. I feel fine most days, just tired all the time. My tumors have shrunk a little. I am 52 years old. Everyone that knows I have cancer always says that they can't believe that I am doing so well. Thank God. I love life and hope to be here a while. Wish you the best also. Theresa Theresa T. Mon, 04 Aug 2003 00:00:00 GMT Hi, Jan! So glad to hear of a stage 4 person surviving 7 years. I was diagnosed with stage 3 in 4/2000. I received 9 months of chemo & everything looked great. However, within 3 months, the beast was back!! I have now been on chemo for the past 2-1/2 years. We have been successful at keeping the cancer stable, but have not found a drug to actually get rid of it for me. (we have tried about 8 different meds). I must say that I feel pretty well though, just a bit tired. I have been able to continue working on a parti-time basis. I would say that the best thing that any cancer patient can do is to remain positive and keep up the fight!! Good luck to all, Deb Debbie B. Mon, 04 Aug 2003 00:00:00 GMT My sister has ovarian cancer also stage four. She is not surviving. She just had test done to see if the cancer returned and it has. It is now in her lymph node. What treatment(s) did you have for your cancer? What did you eat and drink during your treatments. What did you do to help with your survival? Do you know anything about returning cancer and if it is in the lymph node> Barbara B. Mon, 04 Aug 2003 00:00:00 GMT Hi Jan, So good to hear that there are survivors over 5 years out there. Congratulations and God bless you. I am almost 7 months in remission- stage III. Feel great and had a wonderful summer. Back to teaching 8th graders soon. I am 58. Any suggestions on how to deal with the anxiety of the CA-125 test every 3 months? Take care. Mary Louise T. Mon, 04 Aug 2003 00:00:00 GMT Dear Barbara, Please take one day at a time. I did not do anything special in regards to my diet while on chemo and after but I did and do try to eat healthier even though I thought I did so before. And I do take supplements to boost the immune system. I think it is a good idea. Although the docs for whatever reason don't seem to want you to take them much during treatment. ???? I had mostly taxol for my chemo. 8 treatments. Wishing you the best........be well, Jan Jan T. Mon, 04 Aug 2003 00:00:00 GMT Hi Doris, Well at least your doctor is giving you some good encouragement there. Mine were mostly negative back when so go figure. My chemo was mostly taxol and I think after the first 3 or 4, then it was a combo. taxol and ? Total of 8. Wish you the best in this cancer struggle. It's tough stuff isn't it? Stay strong and keep the faith my friend. We have to do this. We are all sisters in this fight and we will get there. Take care of you.......Jan Jan T. Mon, 04 Aug 2003 00:00:00 GMT Hi Mary, I was diagnosed in May 01, stage 3. Instead of worrying about my next CA125 test, I spend the time researching and putting into pratice on what I have learned to improve my immune system. This includes eating nutritiously and exercise. I am pretty sure what I am doing is right, and should the cancer appear again, I will still continue to do what I am doing, except I will have to do more of it. I am still reading and learning, and recently I have added self-massage to improve my health. I also do qigong and deep breathing exercises. I am also walking 45 mins on my treadmill 5 days a week to lose weight. I lean towards a fruits and vegetable diet with a small amount of animal protein. I make my own desserts with beans and unrefined sugar or molasses. I have given up coffee for green tea. I stay away from white flour and dairy products. It took me more than a year to lose 3 pounds, but I believe it is important to stay fit. My last CA125 test was in July - it was a 6. Joanna C. Tue, 05 Aug 2003 00:00:00 GMT Hi, I was diagnosed 11/2000 with stage 3C, which means it was in a lymph node. Went through surgery and then 6 rounds of chemo with taxol and carboplatin. I've been cancer-free ever since. I do get rather anxious each time I have a CA-125 done, but they've been good since early in chemo, so I just expect the best and so far I haven't been disappointed. I do eat better now, soy and lots of fruits and vegetables and whole grains. I'm very glad for those of you who have good insurance because I have gone through all of this without any medical insurance. Initial treatment came to about $50,000 out of my pocket! It is something that I am bound and determined not to undergo again, either physically or financially! Jo Etta H. La Veta, Colorado Jo Etta H. Tue, 05 Aug 2003 00:00:00 GMT Hi Jan and other on the chat: I had stage one ovarian cancer in May 2002 - surgery and chemo (short run - only 3). But some of my cancer cells were called clear cell and now they have returned. I am trying to control with good diet, exercise etc. As clear cell doesn't seem to be receptive to chemo. Anyone out there in the same situation or know anything about clear cell? I can't seem to find very much information. Hang in there everyone - I try to just take good heart and be as healthy and happy as possible. Joyce Joyce C. Tue, 05 Aug 2003 00:00:00 GMT Hi, I have stage 3 cancer and it returned last year after 4 years of being cancer free. I am free now, but for how long? I try not to think about it but just keep enjoying my grandkids and family and exercise and eat healthy. Good luck. I don't know if I have clear cell, I don't think so as mine has invaded the lymph nodes so that alone can have it spread, but so far so good. Keep smiling one day at a time. Maureen Maureen J. Tue, 05 Aug 2003 00:00:00 GMT Hi Oby, I am a 6 yr survivor and I had a reoccurance last year this time. I almost had to have the procrit shot, but a nutritionist told me to eat shittake mushrooms, so in one week I was eating them every day and to my surprise they did the trick - white blood count came up and no extra shots. I talked to a woman in the waiting room and she takes mushroom pills everyday. So there must be something to it. Good luck and stay happy. Maureen Maureen J. Tue, 05 Aug 2003 00:00:00 GMT Hi, I have stage three ovarian cancer and have survived for six years. It has returned in the lymphnode by the aorta in the middle of the body and was too close to organs to be operated on. I was put on carboplatium chemo and am doing well now. I was considered stage three as originally it went to the lymph nodes, but not organs. so far so good. There is a book called Beating Cancer with Nutrition put out by a doctor as the Cancer Treatment Centers of America and it is wonderful and will give you diet information as well as vitamins and minerals to take which I did and should get back to!! Think positive. Maureen Maureen J. Tue, 05 Aug 2003 00:00:00 GMT Hi Oby, my mom was diagnosed with stage111C in May 2003. She received a full hysterectomy and tumor removal. Her first chemo treatment was not properly monitered by her oncologist. This resulted in a sudden loss of sodium and electrolytes which she had to be hospitalized. The fluids were given to fast for her age and condition resulting in a shrinking of the membrane in her brain. This has been a big set back for her. She only received one treatment of carboplatin and Taxol. Her treatments had to be postponed for atleast a month and half. She will be starting her treatment of Topetecan and it is good to hear of the success you have had. I hope this works for her as well. She will be 70 in May. Thank God we will be able to take her to City of Hope for her treatments now. God Bless jill e. Tue, 05 Aug 2003 00:00:00 GMT Hi Barbara! My ovarian cancer (stage 3C), in the beginning, was also detected in a lymph node at my aorta three years ago. I had a complete hysterectomy with removal of this lymph node. Since then, my cancer had returned and showed up in various other lymph nodes. However, the chemo can kill the cancer in the lymph nodes as well. I have been receiving chemo again now for two years even tho there has been lymph node involvement with no spreading of the disease. The key is to keep up with all follow-up visits for early detection of any recurrence of the disease and start treatment ASAP. I also advise thinking positive and just eat as healthy as possible. They typically recommend a diet high in fruits and vegetables. Dietary protein is also very important while on chemotherapy. I wish your sister and yourself the best of luck! Debbie Debbie B. Wed, 06 Aug 2003 00:00:00 GMT Hi Jan - Had one ovary removed in February - symptoms for two months were blood clots in my legs - professor didn't know what was causing them so sent me for a CT scan and there was this "squatter" - had it whipped out - gynecologist thought it was fine and third day - bad result - luckily for me stage 1 - now 6 months later and I am going in for surgery on Tuesday to have the other one removed - biopsy's and stomach washing to double check that there has been no spread. Sending a prayer your way to be strong and positive - because I believe that we can beat this! Take care. Anet, South Africa anet k. Thu, 07 Aug 2003 00:00:00 GMT Hi Survivor! Those are the people I most ove to hear about! Congrats! I am confident their have been trials and tribulations along the way and you have persisted! I was inititally diagnosed in February of 1998. Had chemo over 100 times over the course of the following 18 months and sought a couple of "second opinions." Ultimately, my CA 125 decreased to 18 and I was in "wait and see" mode. Approximately 18 months later (Feb. 2001), I wasn't feeling feeling well, went to the doctor, he put me in the hospital for tests and I awoke the next morning paralyzed from my eyelids to the tips of my toes. I was in the hospital for the next 10 months. Am now out of the wheelchair, away from the walker, and with a spiffy looking cane! Also, I am elated to have returned to the world of pseudo normalcy! Last November, again had surgery for malignant lymph nodes in the abdomincal area and high into the aortic track. Just finished Doxel chemo treatment-six rounds. Gynecoogic onc is somewhat less than positive regarding prognosis! CA 125 last month was at 89. Tell me about your cancer experience. Treatment experiences? Tryng to determine if there is something I am missing! Again, happy to hear that you are doing well!!! Sally Sally M. Thu, 07 Aug 2003 00:00:00 GMT I just finished 6 rounds of Doxil and it has very little to decrease my C 125. AFter having been on chemo for over 18 months (at one point; prior to my lastest experience with chemo) I decided to seek a second opinion and traveled to the Cleveland Clinic to see a Dr. Maury Markman. His first question was "why have you been on chemo so long????? It changed the nature of my treatment. My next move was to transfer from a general oncologist to one specializing in gynecologic cancer. I have since had challenges but feel a bit better being with someone who is also affiliated with a research and teaching hospital. Perhaps you need a second opinion. What has been the progression of your CA 125 in the past year? Sally Sally M. Thu, 07 Aug 2003 00:00:00 GMT Happy to hear you are doing better. Sounds like you have had your challenges along the way. I do believe one extremely positive move is that you are continuing to be involved in the world of work! Sometimes, I get the impression that when we quit working, shortly following diagnosis; we begin to disassociate ourselves with a meaningful aspect of our life. Just my humble opinion! Sally Sally M. Thu, 07 Aug 2003 00:00:00 GMT Maureen: I also have a cancerous lymph node high in the aortic track and it apparently is inoperable. So, we are waiting to see what happens. My doctor basically has offered little by way of positive outlook. She simply has indicated that chemo is not working, radiation is not likely to be effective, and it is not operable. So, I pray a lot! Have you sought another opinion, perhaps from one of the more advanced hospitals i.e. MD Anderson, Sloan, Mayo etc???? Sally Sally M. Thu, 07 Aug 2003 00:00:00 GMT Hi Sally, I didn't mean to sound like nothing had been done for my cancer near the aorta. It has. I had six treatments of Taxol and Carboplatin and I have checked out fine so far and it is just shy of one month since my last treatment. I hope you can have something done and soon. It was relatively small when it was discovered, but has cleared up now. Good luck. Maureen Maureen J. Thu, 07 Aug 2003 00:00:00 GMT Hello Jan, it is good to finally hear from someone who has actually ovarian cancer. I was in remission until May '03. Went for routine checkup and found that a piece of the monster had evaded the first treatment of taxol and carboplatinum. Did a second surgery and have just finished the first treatment of taxotere, which by the way is just as tough without the nausea. Some of the other side effects are just as bad. The white blood cells dropped drastically the first week and now I'm fighting a fungal virus as well. The dr. that I was going to decided that this was my fault for getting the virus and treated me like a child so seeing your message today was a real blessing for me. Thank you for your story, Ouida ouida l. Thu, 07 Aug 2003 00:00:00 GMT Hi, Doris, this is Oby. Yes, Medicare is WONDERFUL since it covers 80% of the costs, but please, please, check into getting a 'medi-gap' policy that will cover the remaining 20%. I mean, with my medical bills, etc. amounting to approximately $39,000 per month there is NO WAY that I could cover 20% of that cost!!! I don't know where you live...I live in IL...and I found a company called Country Life which was about $30 less per month (for more coverage) than Blue Cross. I do know that Country Life covers several other states. I send you my love, Oby Oby T. Fri, 08 Aug 2003 00:00:00 GMT Thanks for your email. I am following a diet similar to yours and have exercised in some way or another (biking or walking) for over 25 years. However, I do use dairy products and have added flaxseed and soy to my diet. Keep up the good work and I will work on losing some of my anxiety before my next gynecologic oncologist visit in November. Take care. Mary Louise T. Fri, 08 Aug 2003 00:00:00 GMT Hi Deb, This is Barbara. My sister has stage 4 ovarian cancer. Hers came back in her lymph node and now possibly in her colon. At first we were all devastated and depressed. I found with the help of prayers, good friends, and this message board and you wonderful people I can cope better and am reminded of keeping positive and helping them to continue to fight. I thank you and all the others for the strength you have, courage and determination. My prayers, love and support are with you. I am glad you are feeling pretty good. I hope you continue to feel this way. Keep up the fight and hope. You are the great. My sister's husband has bone cancer but is in remission he took it the hardest. He is doing great. He still is in remission, which they say is a miracle. Take care. Barb Barbara B. Mon, 18 Aug 2003 00:00:00 GMT Hi Maureen, Glad you are doing well. My sister is having a hard time dealing with her return of cancer from the ovarian cancer. I have forwarded as much info as I can from this message board from others to give her hope, strength and the fight to survive. It all helps me too. Thank you for your input and God Bless. Best wishes hope you continue to do well and feel well. Hope your summer is going well. Love, Barb Barbara B. Mon, 18 Aug 2003 00:00:00 GMT I'm just starting out with all this ovarian cancer process. My CA-125 levels are 64 and one month later 82 and now I'm waiting for another result. I had a sono done and there's a 1.5 cm tumor/cyst on my right ovary. I had cervical cancer (and had most of it removed in a cone biopsy procedure). The Dr.'s are so reluntent to actually tell me it's ovarian cancer because I am only 35. One Dr. told me CA levels can increase due to "stress." I laughed in his face. My WHOLE family, on both sides, has a LONG history of cancer. On top of everything I have Lupus SLE. Should I do the radiation/chemo therepy's or not? I can use all the info I can get and it would be greatly appreciated. Lisa L. Sun, 31 Aug 2003 00:00:00 GMT Hi Lisa, Please...I hope you are seeing a good gyn and an oncologist. What do they advise? Any chemo or radiation? Your much too young for all of this but with that history there you must stay on top of things. Keep posting my friend. And if you are interested in a couple of good support sites e-mail me and I will make sure you get the names of them . I don't know what I would do with out them my friend. Be well and take care of you...Jan Jan T. Sun, 31 Aug 2003 00:00:00 GMT Hi! I was just told the end of May 2003 that I have stage 3. I underwent open exploratory surgery on June 25. They were able to get 90 - 95 % of the tumors out but had to leave the one attached to my intestines. I had the first 3 days of chemo a week ago and did well with it so far. I have a very good attitude, but am very frustrated when you have a spouse that is not supportive. The medical people along with staff social workers have told him that it would be helpful for him and it would be helping to be supportive to me, to go to spouse meetings at the Gilda Radner center in our town so that he can learn about cancer and how best to help. Is there anyone out there trying to deal with cancer and having the added stress of dealing with someone that is not supportive? I am so tired of hearing whining that amounts to: it is all about him and not about me? shelley c. Mon, 01 Sep 2003 00:00:00 GMT I am STILL messing with my primary Dr. I'm trying to get in to see a gyno/oncologist. I had to literally force her to refer me to him. I am having a lot of problems convincing people that I have ovarian cancer but they think I'm too young. I want to go straight to an oncologist to perform all surgery's. If I went to the gyno he wanted to just do a biopsy and then send me to an oncologist. I want to get everything done at once. I think my mom is finally coming around but it's hard to convince her of it too. I could use all the support I can get since I'm not getting any from my family or Dr. Any links would be helpful. God Bless. Lisa L. Mon, 01 Sep 2003 00:00:00 GMT Hi, Jill...sorry it took me this long to respond. Yes, the Topotecan has been working for me...it's been a year last month that I've been taking it. The only thing that I've noticed just recently is that I've been getting EXTREMELY fatigued by the 3rd treatment. So, since my blood counts and CA 125 are good, the doc and I have decided to try giving me an additional week in between treatments. In other words, I was taking Topotecan every third week...now we're going to try giving me 3 weeks between treatments, to see if that helps. I would really hate to stop the Topotecan because it's been going so well for me. So I've decided that even if I have to have 5-6 days of being extremely fatigued I can handle that. I'll just planning on staying home and resting. I'll just rent some videos from the library, and I also have some books I want to read. After all, that's what I did when I had chemo the first time. On the day I had chemo, I'd go to Blockbuster afterwards and rent 9-10 of their cheapest movies and spend time watching them. I've always been a movie buff anyway! When I had chemo the second time my cancer came back, I'd go to the grocery store ahead of time and stock up on things I could heat up in the microwave, because I knew that I wouldn't have the strength to cook anything -- geez! I barely had the strength to walk to the bathroom for 5 days, and hey! I live in a studio apartment!!! You know, "you gotta do what you gotta do," right? I love you, my sister, Oby Oby T. Mon, 01 Sep 2003 00:00:00 GMT Hey, Doris...did you check into getting 'medi-gap' insurance yet so that you're covered for the 20% of costs that Medicare doesn't cover? Boy, if I didn't have that I'd be in a 'charity ward' of some downbeat hospital! Let me know, all right? Love you, my sister, Oby Oby T. Mon, 01 Sep 2003 00:00:00 GMT Lisa girl, you get yourself to a doctor for a second opinion...even a third if you have to. Ovarian cancer is definitely NOT something to fool around with. The longer it takes to diagnose it, the worse it gets. This is not meant to scare you, only to say the truth about what it sounds you might be dealing with. Age has absolutely nothing to do with whether you can or cannot get ovarian cancer, and from what you say about your family's background...I would say that it's a definite possibility. In an interview that Fran Dressler (not sure about the spelling, but you know who I mean...the woman who played "The Nanny" on TV) she said it took her two years and going to nine doctors before one of them was finally able to tell her what was wrong! Don't just sit around worrying about it -- do something about it -- now! Who knows, it may not be ovarian cancer, but it's much better to be safe than sorry. As for me, I would rather know what's going on...then I can ready myself for what needs to be done next. I love you, my sister. Please let us know what's happening, all right? Oby in Naperville, IL Oby T. Mon, 01 Sep 2003 00:00:00 GMT Hey, Doris...it's Oby again. Check with your doctor to see if you can take Topotecan. I've been on it for a year now and the results have been very good. I decided not to try Doxil because I already had neuropathy in my feet and I didn't want to put my tootsies through any more! hahahahaha... Let me know what you find out, all right? Love you, my sister, Oby Oby T. Mon, 01 Sep 2003 00:00:00 GMT Thank you for the reply. The oncologist has decided to put my mom on carboplatin and taxol instead. Her second round starts next week. She is stage 4 now. They have seen a couple of spots on her lungs as well and in some lymph nodes. Just wondering if anyone out there knows of anyone my moms age.(70 in Nov.) having the same type of problem. Any advice on alternative methods in combo with the chemo.? Would love to hear from any survivors. The visiting nurses assoc. just came to pay her a visit and are already talking about looking in hospice. I (we) are not ready to give up yet. Thank you, Jill E. jill e. Mon, 01 Sep 2003 00:00:00 GMT Hi, Mary Louise...this is Oby. You asked, "How does one keep the anxiety down when you know a CA 125 test is coming up?" (Don't know if I quoted you correctly) All I can share with you is what I did when I found out that my ovarian cancer had come back. I began praying for only one thing...acceptance. Acceptance of whatever happens and whenever it happens. About 3 months later, I was sitting at home one afternoon watching TV. All of a sudden, I felt as though a piece of very sheer fabric fell over my head and went clean down to my feet. Immediately, I felt as though God had completely embraced me, and He said to me, "Oby, there is nothing to be afraid of. I'm here with you and I'll always be with you." At that very moment I knew that I had gained the 'acceptance' that I'd been praying for, and every since that I have not been afraid. Not even afraid, when three months after completing my chemo, my cancer came back again. With my oncologist, I had an attitude of, "All right, so what do we do now?" That was a year ago this past month (August) and I have been taking Topotecan ever since then. I will be celebrating my 10th AA birthday this coming December 13th. Just one of the 'lessons' that I have learned in AA is that, "God will never give us more than we can handle." I have also learned how to "Let Go and Let God," and how to "Turn it over." It took me 8 years before I was really able to do that, however, it has been a 'saving grace' to me. Nowadays I feel that God is with me all of the time, and oh, my...what a wonderful, comforting feeling this is. In so many, many ways this whole 'cancer experience' has brought so many blessings into my life! And yes, I have also learned many valuable 'lessons' that I needed to learn...and I continue to learn more every day. After all, isn't that what life is all about? A continuing learning experience. I have heard over and over and over again, in the support groups that I have been attending over the past 3 years, people saying, "If I didn't have God in my life I don't know how I would get through this." However, just saying that, "I have God in my life," are empty words...unless you have truly placed yourself in God's hands. So, "Let Go and Let God" take care of the results of those CA 125 tests! I hope you don't feel as though I've been doing a bit of preaching here. I only wanted to share with you what has been my 'saving grace.' I love you, my sister, Oby Oby T. Mon, 01 Sep 2003 00:00:00 GMT Hi, Jill...so sorry it took me so long to reply! Tell your mom that I turned 70 yrs. "young" this past January, and I'm still hangin' in thar. If she'd like to correspond with me, my email address is: soaringspirit13@yahoo.com Please let me know how the Topotecan works for your mom. As you know, I've been taking it for a year now, and just over the past 2 treatments I started experiencing some pretty heavy fatigue about midway during the treatment and for a few days afterwards. So between my doc and me, we've decided to try giving me 3 weeks inbetween the treatments instead of the two. Since my blood results and CA 125 have been so good, we figure it won't hurt to try this. I really don't want to stop the Topotecan...good results and all...so I've decided that if I do have to deal with this fatigue, that's what I'll do. You might also want to have your mother check with her doctor about taking Procrit (for red blood cells) which I've been taking weekly for about six months, and Neulasta (for white blood cells), which I've been taking on the last day of treatment for about four months. Please keep me updated on your mom, all right, because...I care... Love you, girl! Oby Oby T. Mon, 01 Sep 2003 00:00:00 GMT Hello again, Jill...this is Oby...again. Just read that your mom is on Carboplactin and Taxol instead of the Topotecan. Tell me, what type of chemo did she have before, if any. The first time around I had Carbo/Taxol (an abbreviation), and the second time we started out with Carbo/Taxol, but during the 2nd treatment I had an allergic reaction to the Carboplactic (at least, that's what the doctor said it was!), so on the 3rd treatment he switched me over to Cisplatin/Taxol, since Cisplatin is in the same "family." It worked...but 3 months later, the cancer came back again...and that's when I went to Topotecan...which, as you know, has really been working for me. Another thing...I'd been taking vitamin supplements before I found out that I had cancer. I asked the doctors, "Would it hurt to continue to take my vitamin supplements during chemo," and both my oncologist and primary doc said the same identical thing..."It wouldn't hurt, but it wouldn't help either. You might as well save the money and start them again after the chemo." Well, my reaction to their opinions was, "Bullshit!" and I continued to take them. However, on the advice of someone who knew a lot about vitamins, I increased my intake of Vitamin E from 400 to 800 per day, and also increased my Vitamin C. I stopped taking any form of sugar...and instead, went to the vitamin store and bought Stevia, which is a 'natural' sweetener. I started drinking decaffinated coffee (Trader Joe's has one that is great!), and since I love ice tea (at any time of year!) I started brewing my own batch of decaffinated Green Tea, which is very good for you. Other things I take are garlic pills (even though I eat a lot of it), calcium, magnesium, and of course, a good multi vitamin, plus some other things which I can't remember right now (chemo brain, you know). Just recently, a friend of mine (who knows a LOT), told me that every morning I should make a "fruit" drink. I don't have a juicer, so I use my blender. You can put all sorts of fruits in it...oranges, apples, bananas, blueberries, strawberries, etc. I asked her, "Why can't I just drink a glass of orange juice?" and she said it doesn't compare with making it for yourself...fresh! She added that in the late afternoon, early evening, make myself a 'vegetable' drink. Tomatoes, green pepper, onion, garlic, parsley, celery, whatever you want...just dump it all in the blender and press, "GO!" (Actually, since there is no "GO!" button on a blender, I find it's good to use the "Pulse" button.) Me? I hate to admit it, but I very rarely eat vegetables...so this is a wonderful alternative for me, and as my friend told me, "By mixing all of these vegetables into one drink, you'll be getting more vegetables than most people eat in one day!" And when I asked her, "Can't I just drink a glass of V8 juice?" she replied, "No, Oby, it's not the same thing." Well, at least I tried! hahahaha... So I hope that some of these suggestions will be helpful to you and whomever else reads this message. Bon Appetit! Please keep in touch and let me know how your mother is doing, all right? In the meantime, tell your mother that I will pray for her...and also, that age has nothing to do with this, or any other type of cancer. I love you, hon...Oby Oby T. Mon, 01 Sep 2003 00:00:00 GMT My mom has primary peritoneal carcinoma, the doctors say its just like ovarian they say it behaves the same and is treated the same. Moms ca-125 was 2938 then after surgery and 5 rounds of chemo taxol/carbo the ca-125 went to 91. Well her blood count was to low to give the chemo the last 2 times so she had to wait a week longer each time. The last ca-125 is now at 111, I mentioned getting my mom some supplements and her doc said if she did he wouldnt have anything to do with her treatments. Well we are on our way to CTCA on the 16th of sept I am hoping they can give some insight on this cancer as well as nutrition information. Anyone heard of primary peritoneal carcinoma? I want the best for my mom why are the docs so rude about supplements. Wouldnt it have been better for him to recomend a nutritionist or something? I am very scared for my mom she is my life, as well as my husband and 3 childeren. Any advice or help with knowing what expect when we go down there would be great. You all have inspired me in too many ways to mention. I hope for the best for all of you and greatly appreciate you all sharing, I and my mom arent alone. Take care everyone. Deb R Deborah R. Mon, 01 Sep 2003 00:00:00 GMT Hi Jan, thank for writing about your encouraging survival. Could you tell me please what form (drugs etc) of Chemo you had? Thanks Sammy Tue, 02 Sep 2003 00:00:00 GMT Hi there Shelly, Don't mind at all my friend. I had mostly Taxol for my chemo back in late 1996 and into May of 1997. I think the first maybe 4 were taxol and then a combo of taxol and something else for I think 4 more. Might have been just 3 more. I was in such a state at the time it is hard for me to remember exactly. So...much to get through. E-mail me anytime my friend if you like okay? Be well and take care of you....Jan Jan T. Tue, 02 Sep 2003 00:00:00 GMT Hi Oby, No, I did not think you were preaching. I sincerely appreciated your comments and know that each day my acceptance and trust in God does get stronger. If He has led me to it, He will lead me through it. I do believe that. Thanks again. Take care. Health and hugs to you. Mary Louise T. Tue, 02 Sep 2003 00:00:00 GMT Dear Jan, Thank you so much for responding. I have since read many of your other posts and you are truly and inspiration. It also sounds like you are being blessed with your giving so much to others! Keep being a source of light. Your Friend, Shelly Sammy Tue, 02 Sep 2003 00:00:00 GMT I am in my second chemo for Ovarian Cancer, Stage III. I'm interested in diet. My doctor took me away from Soy as it is a hormone. My cancer count went up when I was eating beef (for the first time in years), beans and lentils (that have too much acid according to what I have been told). I'm now making "big" salads and trying to eat as much raw food as possible. I take Paw Paw Reg Cell, B Vitamins and besides chemo, the doctor has me has Celebrex for cancer. It seems to be something new. Thank you for any input you can give me. Audrey Audrey M. Wed, 17 Sep 2003 00:00:00 GMT Thank you Oby for your wonderful testimony. When I was given my "death sentence" I asked God so spare me to take care of my very ill husband. I feel that He is doing that. Audrey Audrey M. Wed, 17 Sep 2003 00:00:00 GMT Hi Deborah, sorry I don't know anything about your mom's type of cancer but I am going through the same thing as you. My mom will be 70 (god willing) in Nov. and will be starting her 3rd treatment of Carbo/Taxol. It is really taking a toll on her. I too want the best for her and can't understand why these oncologists do not stress more about nutrition and complimentary treatments. You'd think we were taking away their money if we went elswhere or try something along with traditional treatment. Dont they understand we only want the best. Please let me know how the CTCA goes as I am interested for my mom. Where is it at? We are in California and I just can't seem to find a place like that. Good luck to you, Jill E. jill e. Wed, 17 Sep 2003 00:00:00 GMT Hi Oby, I have stage iv ovarian cancer with lymph node involvement, my gyn/onc thinks I'm doing well as can be expected at this point. I also am on topotecan weekly, would like to know did you experience extreme gastro discomfort and if so what do you do to help relieve it. Good luck to all of us going thru this terrible disease and GOD BLESS !!!! Jackie Jacqueline R. Wed, 24 Sep 2003 00:00:00 GMT Hi Jacquiline, did you, or have any others experienced chest pain with lymph node involvement with the ovarian cancer. Or has anyone experienced any sort of chest pain? Thanks Shelly Sammy Mon, 13 Oct 2003 00:00:00 GMT Hi Deb, I also have primary peritoneal cancer. Diagnosed in march 2002. I was also told that it is treated the same as ovarian cancer. I did have some right ovary involvment. Had complete histo,2 bowel resections,& debulking of the omentum. Then went on to have 6 treatments of carbo/taxol. My CA125 counts went from over 4000 down to 11. Have been in remission now since. I ask my oncologist about taking vitamins during treatment and he said it won't hurt, who knows it may help. So I have been taking Shakley vitamins plus C & E. Don't know if it has helped,but it hasn't hurt! I go every 3 months for checkups and have a CA125 done, so far so good, my last count was 20 so I am in the normal range. All I can say is try to keep a positive outlook on things. I know that is d--- hard to do sometimes. I have battles with that myself, I do find that reading the stories in this discussion help a lot,I do not know anyone who has the same cancer that I could speak to personally so this is the next best thing. Actually probably better because there are so many of us,with such varied ideas. Thanks to all of you that write in this group. you are a big help. Minnie minnie p. Tue, 14 Oct 2003 00:00:00 GMT I'm a survivor of Fallopian Tube Cancer Stage III - diagnosed 8-2-02 now in my 2nd treatment of my third round of chemo (Doxol). I've joined a local support group which really enjoy, and while discussing the topinc of Ovarian Cancer the other night, I expressed by concern of how little information is out and about regarding this often times deadly disease. At the time I was diagnosed, and traveling from bladdar specialist to women's services specialists, etc. no one ever recognized my symptoms as possibly being related to Ovarian Cancer. I'd had 4 out of the 5 symptoms for almost 8 months, and none of these doctors ever suggested we look into this. Since my diagnoses and surgeries I've been on a "mission" to get the word out to everyone I know about the 5 major symptoms of Ovarian Cancer. I've written "letters to the Editors" of local papers, emailed friends etc. of the symptoms as taken from the John Hopkins Hospital website. Recently, I was asked to speak at a local health fair regarding the statistics and symptoms of Ovarian Cancer and I'm very eager to do this. I'd like to know if others with this cancer have done the same, and what suggestions you might have for me to include in my "speech" this Saturday. (Nov. 1)? I just feel that if I can prevent one woman somewhere in this world from waiting as long as I did for a diagnosis, it will be worth any effort on my part. Early diagnosis is the best hope for beating this type of cancer, and if most of our doctors are failing to let these be known, then we need to speak out about this. Remember...Ovarian Cancer whispers....so listen! Your very life depends on hearing the "sounds". Any and all suggestions for this speech I'm giving wll be greatly appreciated. God bless all of you! Love, Sandy L.L. Sandy L. Wed, 29 Oct 2003 00:00:00 GMT Hi Sandy, Wish I could give you some magic words that would make women aware of the importance of getting checked if they are experiencing any different body functions or feelings then they normally do. I know from experience that waiting isn't the thing to do. My symptoms, pain in lower abdomen, were so mild that I didn't go to dr till my husband got sick if hearing me complain and made me see the dr. Thank God I have a family dr who is very knowlegable and had me have a CT scan. was diagnosed with stage 3C primary peritoneal after surgery in 3/2002. Doing great, so far no reocurrence. Good Luck on your speech, and keep spreading the word. Also want to thank all of you who write in this message board, it is like a lifeline for me, don't know any one else with ovarian cancer to speak with. Keep the fight my friends, Minnie minnie p. Wed, 29 Oct 2003 00:00:00 GMT Lisa, you need to move on your gut feelings right away and locate a gynocologic oncologist in your area. Ovarian cancer can strike at any age and ovarian cancer signs "whisper" so listen. Your very life depends on it. Several doctors I was seeing for over 8 months for many of the ovarian cancer symptoms never took it seriously. By the time I was diagnosed I had 4 out of the 5 symptoms for ovarian cancer and diagnosed with stage IIIc Fallopian tube cancer. Don't wait, ask to be referred to a gynocologic oncologist immediately, then have them do 1. A bimanuel pelvic exam 2. transvaginal ultrasound 3. CA 125 (bloodtest) 4. A Cat scan . My family physician missed two large tumors at the bimanuel exam, but after I then insisted on a transvaginal ultrasound (she thought this not necessary - thought my problem was a bladder or incontinence problem only) the ultrasound located a large mass in the ovary and the cat scan confirmed it. It's important that you get connected immediately with a gynocologic oncologist - not just someone who is a gyn. The gyn oncologist has had many more years of training in the field of reproductive cancers and it's imperative that your surgery be done by this type of Dr. Much research that I've done has confirmed that this type of Dr. is much more apt to do a more thorough surgery and your outcome will likely be much better as a result of choosing this type of Dr.. My prayers are with you, but please don't waste a minute. Remember ovarian cancer whispers...so listen. Your very life depends upon it!!!! Love, Sandy L.L. Sandy L. Thu, 30 Oct 2003 00:00:00 GMT Hi Minnie, So-o-o-o happy you are doing so well. I wanted to mention that there is also a monthly newsletter for survivors of ovarian cancer that has a lot of really good info for those of us who are fighting this dread disease. It can be found online at www.ovarian-news.org (called Conversations! The International Newsletter for Those Fighting Ovarian Cancer. My prayers are with you Minnie, as well as all others who are cancer survivors everywhere. Sandy Sandy L. Fri, 07 Nov 2003 00:00:00 GMT Hi Sandy, and all of you. Well, it's back. Just got home from the dr. CA125 is elevated and having abd pain so dr ordered CT scan wasn't much there but do to symptoms and elecated CT he thinks it is back in the early stages. Have to go for 2nd opinion to Univeristy Hospital in Madison WI on Monday. Don't know what they are planning on doing as of yet. Will let you all know. Please keep me in your prayers. Thanks, Minnie minnie p. Thu, 20 Nov 2003 00:00:00 GMT Dear Minnie, We all are pulling for you and praying for you, especially as you go for your appt. on Monday. Remember what the Doc said, it may be back but in the early stages. That is good news, along with the not so good news that it may have returned. A second opinion is always so important (and even 3,4, or 5 opinions as I did). Keep trusting in the Lord, He promised to be our Comforter, our strength and our hope. We need to take refuge in Him until these calamities be overpast!! (excerpted from Psalms 57:1 & 2.) Love, Sandy L.L. Sandy L. Sun, 23 Nov 2003 00:00:00 GMT My prayers are with you Minnie and to all of you out there. I was diagnosed with stage 4 unknown primary, treated at ovarian. I have just had my 3rd treatment. Other than those nasty side effects for a couple of days. I feel fine. Only time will tell what the outcome will be but, keeping your chin up and enjoying every day you have helps alot. I have just discovered this site and it helps to read everyones messages. God's watching over all of us. Trust in that. Love to All, Ivy Ivy S. Tue, 25 Nov 2003 00:00:00 GMT Hi Sandy, Also Hi to all readers n this group. Well the 2nd opinion was the same as the first. But I am glad I went for it, I am more at ease now, even if I still don't know if the cancer has returned or if something else is causing the pain and the elevated ca125. I was very impressed with the UW clinic and the Drs, my case was discussed with a panel of drs and I had 2 diffrent Drs involved with the exam and questions. They do think it probably is back, but in the early stages, but there is always the possibility that they are wrong. Lets hope so. Anyway I will be following with my oncologist on a monthly basis, or less if there are any changes. Will be having monthly ca125 and possibly monthly ct scans done for now till it either progressed or regresses. Hopefully the latter. God bless all of you and my prayers go out to you. I thank you for your concern Love to all, Minnie minnie p. Wed, 26 Nov 2003 00:00:00 GMT Dear Oby, Is the topotecan still helping you? My doctor said that I've run out of options (besides clinical trials) and I was thinking of asking her if I could try it. The first time, I took carbo/taxol. The second time just carboplatin. The third time taxotere, then when that didn't work, gemzar. Now, my cancer has spread. I can't believe that there are no more conventional drugs that could be tried. I don't want to give up! Thanks so much. Debbie Debbie p Wed, 23 Jun 2004 00:00:00 GMT This message is for Jan T...I was wondering if I could chat with you about your chemotherapy experience a little more. My mom was recently diagnosed with stage 3-c ovarian cancer. She just had a hystercetomy 2 1/2 weeks ago,and will be starting chemo in the next couple of weeks. Please respond to this message,and I will ask you more questions at that time. I hope you are doing well. Thanks...Lorie Loriez Wed, 01 Dec 2004 00:00:00 GMT Hi Lorie, Jan here. Just send me a message when ever you want to discuss what ever about ovarian cancer. Be well, Jan Jan T. Wed, 01 Dec 2004 00:00:00 GMT