CancerCompass message board discussion started by Angel of Hope on 11/29/2007 http://www.cancercompass.com/message-board/message/all,18454,0.htm Mon, 13 Oct 2008 00:00:00 GMT Mon, 13 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi is there anyone else out there with stage 3c ovarian cancer? I was diagnosed in April 2006 with stage 3c ovarian cancer, I had the usual carboplatin/Taxel for 6 months thought I would then have a long remission period but unfortunetly I proved to be platinum resistant and the cancer became active within 5 months. I have just finished 6 cycles of caelyx with my scan showing a minor decrease in the desease. My CA125 is 82 (I would have liked to have seen it below 35!) my oncologist said yesterday that he would like me to have a break from treatment so I will not see him for 8 weeks, that makes me happy in one way, but nervous in another! Should he put me on further treatment in the new year he is going to use Gemcarbo (gemcitabine+carboplatin)   Is there anyone out there who has also been told they are platinum resistant? and what treatments have you had? I am only 56 always been well and healthy until this dreadful desease. Looking forward to hearing from you and best wishes to you all. Angel of Hope Thu, 29 Nov 2007 00:00:00 GMT Hi!  I, too, have stage 3C OC.  I was diagnosed in Feb 07, and have been on chemo every since.  The lowest my CA125 has ever been is 106, with it currently being 219.  I would love an 82. I did 6 carboplatin and taxol treatments, and am now in a study with avastin.  I go back to my surgeon next week for a checkup, and figure we will have to do something different.  My CT scan shows no increase in anything, but it is disconcerting that the CA125 does not drop down to 30 or less.  I feel great and work full time.  I have not changed my schedule significantly at all.  When I took my first 6 chemo's, I had to have blood transfusions pretty routinely, but my blood has been fine of late.How did they know you were platinum resistant?   sherco22 Thu, 29 Nov 2007 00:00:00 GMT Hi Sherco, thanks for your reply, it does help don't you think when we can talk to others who are battling with this desease. Great that there has been no increase on your scan so the last treatment must have had an effect be it that your CA125 has not dropped. My oncologist has also talked about Avastin but we have to apply for funding from the primary care trust. When did you start your trial and who is running the trial? do you have it with any other drug or just on its own? and have you experienced any side effects? you say you feel well, that brilliant.  When you were first diagnosed, what were your symptoms? I had terrible pain one night, thought it was indigestion, then I was very sick, this lasted over 48 hours and I went to the A&E where there did tests and found I had a very badly inflammed gall bladder and also diagnosed the cancer! was not a good day!!   They say I am platinum resistant because it was less than six months from finishing 1st line chemo carbo/taxel that the cancer became active. My oncologist is quite excited about the developments going on for Biotherapy and immunotherapy, I just hope it will soon become available to offer as a treatment.  My name is Lin by the way and I live in the Uk. Hope to hear from you again, for now all the best and keep strong. Angel of Hope Sat, 01 Dec 2007 00:00:00 GMT Hi Ladies, My name is Kelly, I am 48, and I have stage IIIc ovarian cancer too. I was diagnosed in July of this year (was 47 then), and started the taxol/carbo chemo regimine in late August. My CA 125 went from 106, to 88, to 69, to 38 over the first three rounds of treatment, but then rose to 44 a week ago and then 55 last Tuesday. I still have four more treatments (two full rounds) to go of my initial treatment. The doctor is going to do a CAT scan this Wednesday to see if cancer is detected. He says the PET scan is the better scan, but that the cost and my mid treatment status prohibits insurance from paying for it. So, if the cancer is large enough to be seen on the CAT scan, I will have to have surgery (my fifth this year) to remove it. He doesn't think that will be the case, but even if no cancer is detected on the scan, he's starting me on Cisplatin (in place of the Carboplatin) this Thursday. I'm not sure if I have mutated resistant cancer yet, or if I have inflammation that is causing the CA 125 test results to rise. Your information is very helpful to me at a time when I'm hoping I'm not chemo resistant, especially this early in the process. I too have been a relatively healthy person, of younger age than what is normal for getting OVCA. Therefore if I should prove to have a resistance to treatment, I am devastated. What do you know and can share with me to understand the ramifications if I am? I'm going to do some research, but your first hand knowledge is very valuable to me. I am so sorry that you are facing such a challenge as well, and hope that something very miraculous can ocurr so we can all laugh about this 20 years from now.  Look forward to hearing back from either or both of you, and thank you in advance for any time and wisdom you have to share. Kelly Kellykil Sat, 15 Dec 2007 00:00:00 GMT  On 12/15/2007 Kellykil wrote:Hi Ladies, My name is Kelly, I am 48, and I have stage IIIc ovarian cancer too. I was diagnosed in July of this year (was 47 then), and started the taxol/carbo chemo regimine in late August. My CA 125 went from 106, to 88, to 69, to 38 over the first three rounds of treatment, but then rose to 44 a week ago and then 55 last Tuesday. I still have four more treatments (two full rounds) to go of my initial treatment. The doctor is going to do a CAT scan this Wednesday to see if cancer is detected. He says the PET scan is the better scan, but that the cost and my mid treatment status prohibits insurance from paying for it. So, if the cancer is large enough to be seen on the CAT scan, I will have to have surgery (my fifth this year) to remove it. He doesn't think that will be the case, but even if no cancer is detected on the scan, he's starting me on Cisplatin (in place of the Carboplatin) this Thursday. I'm not sure if I have mutated resistant cancer yet, or if I have inflammation that is causing the CA 125 test results to rise. Your information is very helpful to me at a time when I'm hoping I'm not chemo resistant, especially this early in the process. I too have been a relatively healthy person, of younger age than what is normal for getting OVCA. Therefore if I should prove to have a resistance to treatment, I am devastated. What do you know and can share with me to understand the ramifications if I am? I'm going to do some research, but your first hand knowledge is very valuable to me. I am so sorry that you are facing such a challenge as well, and hope that something very miraculous can ocurr so we can all laugh about this 20 years from now.  Look forward to hearing back from either or both of you, and thank you in advance for any time and wisdom you have to share. Kelly Hi Kelly,First of all may I thank you for your message and also to say I am very sorry that you too have this dreadful desease. I was surprised to hear that you have had four surgeries already in such a short time? from my experience in meeting other ladies at stage lllc those that are platinum sensitive and responding well to their treatment were first diagnosed over five years ago, one lady I know was staged at lV and that was six years ago. Prognosis based on general statistics do not favour platinum resistant.....but everyone is different and I truly believe if you remain positive and look after your immune system we can prove some of these statistics to be wrong!  The CA125 is an indicator of any activity but the scans give the true picture. Following my last treatment of caelyx in November my scan showed a minor decrease in desease progression..but at least there was some decrease. I am now waiting to see my oncologist in January who will decide whether I should start further treatment. Have you got the drug Avastin (Bevazusamab) available to you there? I presume you are in the States? Avastin has proved successful with some cancers and they are currently testing it with OC but funding is not always available, depends on the area we live.I do wish you well for Wednesdays scan and hope it shows a substantial decrease in desease progression. Please keep in touch.Very best wishes for Christmas and a Happy and Healthy 2008Lin (from the UK) Angel of Hope Tue, 18 Dec 2007 00:00:00 GMT Lin thank you so much for your prompt response. I also appreciate your input on the chemo. Yes, I am in the states, and I am pretty certai Avastin is available here. I have heard of it, and in fact believe that may be the drug a dear friend of mine (who also had ovca, currently in remission! YAY!) was taking during a clinical trial. I'm very encouraged by your input, and thank you again for it. I will definitely let you know what I learn from the scan. I must apologize. After I read my e-mail I realized I didn't clarify why I had so many surgeries. The first was to explore the problem based on a sonogram that depicted multiple ovarian cysts, tons of ovca symptoms, and a CA 125 level of 105. This is when the 5-6 cm tumor was found. Once removed by the general gynocologist, I then got surgery for proper staging, including 21 lymph node removal, hysterecomy, omentum removal, and abdomen port placement. After this surgery they discovered two nodules, one in the omentum (6-7 ml) and sadly, one in a lymph node (3.5 ml). The third surgery was to install a shoulder (IV) port, and the fourth was to restitch some vaginal stitches that came loose (along with an artery). So, not all the surgeries were to remove cancer, and I apologize for making it appear that way. Basically, I'm totally over surgeries at this point, and hope I never have to have another one. Well, except to (hopefully) remove these two ports one day because I'm in total remission. :-) Okay, this e-mail has taken on a life of its own. Time to go. But please note I will update you on the status of my test tomorrow, and pending a clean reading, will begin the final four treatments of my initial plan, with Cisplatin in place of Carboplatin. They will also be giving me another CA 125 test tomorrow, so I should know those results by Thursday. Hopefully they've gone down. I'm a positive thinking person, so I am expecting the best!Talk soon, and thank you again for taking the time to write.Kelly Kellykil Tue, 18 Dec 2007 00:00:00 GMT Just briefly, I wanted to let you know that my CAT scan revealed a mass, as well as cysts on my kidneys and liver. I'm not sure what all this means yet, but will know more after a doctor's appointment today. Early mention of the potential for a fine needle aspiration, in order to use the contents to find the right chemo have been thrown out, but again, I'll learn more when I go today. Just thought I'd keep you posted, as I said I would. Ovarian cancer is an  awful health challenge that I don't recommend anyone taking too lightly. Yet keeping a hopeful attitude is what can get you through the worst times. With all this, I still remain hopeful for a postive, long-term outcome.Please be well, Kelly Kellykil Thu, 20 Dec 2007 00:00:00 GMT Dear Kelly,How did your appointment go on the 20th? I was so sorry to hear the news of your scan, but please please keep positive. Do you follow any particular diet plan? if not I do have some ideas if you would like me to pass them on. With all this worry I do hope you managed to have a nice Christmas. All the very best for a Healthy and Happy 2008.Kind regards,Lin (UK) Angel of Hope Wed, 26 Dec 2007 00:00:00 GMT Hi Kelly and Lin, I was diagnosed with stage 3c ovarian in April2007. I have gone through surgery to remove the ovaries, tubes andparts of the omentum with debulking, then 6 treatments with Taxol andCarboplatin, finishing in Oct. After finishing the treatments, my MDprescribed a CT (abd, thorax and pelvis) which showed somecalcifications in the pelvis. A Pet scan was also prescribed but took 2months to get cleared through insurance. Finally having the Pet done on12/20, I got my report that revealed my cancer had not spread but wasreally not decreased from my pre-chemo Pet scan. I will have a renalscan (my kidneys are slightly "sluggish") and a scan of my heart andthen begin Doxil treatments. I see the oncologist on Jan 7th for thefinal review of the scans and recommendations. I tolerated the Taxoland carbo pretty well also, but Neulasta caused me such severe bonepain, they held off on that, but as a result my white count was verylow and I have had to remain out of work, away from crowds etc. Afterhearing the news of the pet scan, on xmas eve, I had to hold all thisanguish in and be strong for my family. Today, I'm so very depressedand sad. I was really hoping to hear the word remission and return towork, but that is not to be. FYI, in 1982 my mom was diagnosed andtreated for ovarian cancer. She recieved heavy chemo at that time (5fu,cysplatinal and Adriamycin) she survived without recurrence for 25years living to the ripe age of 86. She passed away a month before Iwas diagnosed. She and her history do keep my spirits up, but I"m solow right now. I have never been on any message boards before, so I'm anewbie to this. I wish you both health in the new year and hope yourtreatments give you some successes. I do go to Gilda's club weekly forgroup therapy and that has been so very benifitial to me. I"ll have toask my MD if I'm platin resistent, they didn't mention it. My CA125went down from in the 60's to the low 30's after surgery, and they haveremained in the same place. I think I went up one point on the blooddrawn 2 weeks ago and they redrew on the 24th. Keeping my fingerscrossed. Lin, what special diet do you follow?? I'm curious. Thanks forthis page, be well, Jeanne jeanne c Wed, 26 Dec 2007 00:00:00 GMT Dear Jeanne,Thank you for your message, I was so sorry to hear that you have OC, but was also inspired by your Mothers long long remission, that must give you faith. I understand when you say you have been feeling depressed and sad, I too get days like that when I look at my children (29 & 34) and fear that I may not see them married or have the pleasure of having grand children, but then the old fighting spirit kicks in and I say to myself although I might never be cured of this disease, I can accept living with it and doing as much as I can to keep well. That programme for me is to keep a positive attitude, get plenty of fresh air and excercise (I enjoy walking) and since I was diagnosed I have cut out tea, coffee and alcohol and all dairy products plus no red meat. I eat plenty of vegetables,carrots and broccolli especially, fruit, pulses & brown rice, fish (not farmed and no shellfish, also not smoked) occasional organic chicken or turkey. I have soya milk and yoghurts. I also have Miso soup which is based on the fermented soya beans. I drink lots of green tea, water and fresh fruit juice. I have the occasional glass of red wine. I supplement my diet with brewers yeast, selium, vit D, Calcium and magnesium with zinc, sea kelp, garlic, and paw paw. I do hope the New Year brings you good news and that you have a good response to any further treatment. God Bless you, Lin x Angel of Hope Mon, 31 Dec 2007 00:00:00 GMT Hi ,I'm new to this website and hope you can all help me out there. I have been diagnosed with stage 3C ovarian cancer, just got that news today from my pathology report and was not expecting that news. I had a complete hysterectomy 2 weeks ago, both ovaries were maligant and the cancer had spread to the omentum and there was some on my colon and the path report showed some in my lymph nodes. My CA125 was 2,790. I see an oncolgoist on Fri to discuss treatment which is supposed to be 6 chemo treatments. I have to say I am scared and finding it hard to take this all in and need some suport from others who are going thru the same thing. I pray for you all that we all get good news in the furture about our health and hope that we can keep each other positive and peacful thru this difficult phase in our lives.Thank You for listening,Ber58 Ber58 Sat, 21 Jun 2008 00:00:00 GMT Hi Ber 58,My name is Lin and I was diagnosed in 2006 with stage 3c OC, I had surgery to remove as much as they could and over the last two years have had 3 lines of chemo. I am now just recovering from second look surgery and have been told I will need some more chemo. I know how you are feeling, it is scary and suddenly your life is just full of hospitals and doctors, but its not necessarily that bleak as I know many women who are doing well after several years since first diagnosis. I do hope you manage the chemo ok, you will probably have carboplatinum/taxel as that appears to be the standard treatment. Please keep in touch and let me know how you are doing.God Bless,Lin Angel of Hope Wed, 25 Jun 2008 00:00:00 GMT  On 6/25/2008 Angel of Hope wrote:Hi Ber 58,My name is Lin and I was diagnosed in 2006 with stage 3c OC, I had surgery to remove as much as they could and over the last two years have had 3 lines of chemo. I am now just recovering from second look surgery and have been told I will need some more chemo. I know how you are feeling, it is scary and suddenly your life is just full of hospitals and doctors, but its not necessarily that bleak as I know many women who are doing well after several years since first diagnosis. I do hope you manage the chemo ok, you will probably have carboplatinum/taxel as that appears to be the standard treatment. Please keep in touch and let me know how you are doing.God Bless,Lin Hi Lin,Thank you for our reply, it's great to talk to someone who is going thru the same thing. You are right, there are lots of success stories out there and that is what I am going to focus on. I am scheduled to have 6 chemo treatments, is that how many you did the first time ? What was the result after that and what caused you to have to have more surgery ??? What I am learning is that everyone's case is unique, no one thing works for everyone so we have to be our own statistic and fight as hard as we can. I am reading a book called Cancer Free by Bill Henderson and it has some very interesting things in it. He is completely against chemo but I find the nutrition part makes a lot of sense. You learn a lot about cancer fighting foods that I have stared to incorparate into my diet. I figure it can't hurt. The stronger our immune systems are at this time the better. How are you feeling now ??? were you able to take the chemo ok ? I am scared of starting but at the same time want to get the other side of it to seed how successful it will be for me. I will defiantely include you in my prayers and hope we can continue to talk,Bernie Ber58 Wed, 25 Jun 2008 00:00:00 GMT Hi Bernie,You sound as though you have a great attitude to this desease, when you think of it, it is just cells that are misbehaving and we have to let them know that we are stronger than them! I call them the 'gremlins' and they have no right invading my space!Unfortunately I have not responded well to any of the three lines of chemo, hence the surgery. I am hoping my oncologist can apply to our Primary Care Trust for me to try Avastin.Keep strong and positive Bernie,Best wishesLin Angel of Hope Wed, 25 Jun 2008 00:00:00 GMT Hi Lin,What is Avastin, I havent heard of that, is it a type of chemo ? I wonder why you did'nt respond to the other treatments. I hope that you get to get the Avastin and that it works really well for you. Gremlins, that's funny, I guess they are............. I know I am going to fight my hardest to get rid of them out of my system and a lot of other people do. We know it can be done and we just have to not give up hope and when we are having a bad day lean on our support system to get us thru. So, chin up, and put your trust in God,Nice talking to you,Bernie Ber58 Wed, 25 Jun 2008 00:00:00 GMT Hi Lin,Just wondering how you are doing, havent heard back from you since my last message. Everything ok ???? I hope so, I am praying for you and I know that God listens....I am doing good, waiting for my app. with oncologist on Tue , will know more then.Talk soon,BernieOn 6/25/2008 Angel of Hope wrote:Hi Bernie,You sound as though you have a great attitude to this desease, when you think of it, it is just cells that are misbehaving and we have to let them know that we are stronger than them! I call them the 'gremlins' and they have no right invading my space!Unfortunately I have not responded well to any of the three lines of chemo, hence the surgery. I am hoping my oncologist can apply to our Primary Care Trust for me to try Avastin.Keep strong and positive Bernie,Best wishesLin  Ber58 Sat, 28 Jun 2008 00:00:00 GMT Hi Berniesorry for delay in replying, I hav'nt been feeling too well but it still is early days following my surgery.How did your visit to your oncologist go? what is happening next with you?I went to see my oncologist today to talk about the recent surgery and what happens next...... surgery took away 95% of the cancer leaving a couple of tumours on my liver and some evidence of seedlings in the abdominal cavity. I will be having a scan before the end of July and then the decision is either weekly Topetecan or going on a CA4P trial which is a combination of Carboplatin with Taxel and Combrestatin. There is also another trial based on CD40 but that one is only at phase 1 here.What are the trials going on in the States?Best wishesLin Angel of Hope Wed, 02 Jul 2008 00:00:00 GMT Hi Lin,Good to hear from you again. Glad you are over the surgery. It takes a lot ouf of you doesent it? I did see my oncolgoist and I start chemo on Wed. Taxol and carboplatin, 6 sessions, I guess it is the norm. I am anxious to get started and get this over me although I am quite scared of chemo, trying to calm my fears! Not sure what clinical trials are over here, havent researched that yet. What part of the UK are you in ? I'm orginally from Ireland and all my family are there, one sister in London. I have been in the States 26 years.I have been reading a lot about nutriton for cancer patients and so I am cleaning up my diet. Do you follow any special eating programme ?? From what I read, no red meat, dairy, sugar, alcohol. Eat lots of fresh greens , fruits and vegetable protein. I am making the changes slowly but surely. Sugar is supposed to be the worst, they say cancer feeds on sugar, did you hear that ?Well, I hope you feel better every day from your surgery and I am sending positive vibes your way , take one day at a time and WE CAN GET THRU THIS OK!Your friend,Bernie On 7/2/2008 Angel of Hope wrote:Hi Berniesorry for delay in replying, I hav'nt been feeling too well but it still is early days following my surgery.How did your visit to your oncologist go? what is happening next with you?I went to see my oncologist today to talk about the recent surgery and what happens next...... surgery took away 95% of the cancer leaving a couple of tumours on my liver and some evidence of seedlings in the abdominal cavity. I will be having a scan before the end of July and then the decision is either weekly Topetecan or going on a CA4P trial which is a combination of Carboplatin with Taxel and Combrestatin. There is also another trial based on CD40 but that one is only at phase 1 here.What are the trials going on in the States?Best wishesLin  Ber58 Thu, 03 Jul 2008 00:00:00 GMT Hi Bernie,2 years ago when first diagnosed I did a lot of research and decided to give up all dairy, red meat, tea, coffee, alcohol, sugary things, fizzy drinks, and ate more vegetables, fruit, soya products and soya milk, herbal teas, pasta, rice, fish, organic chicken and turkey.But since I lost all the weight following surgery, the dietician and my oncologist have said I must build myself up in order to be strong for further treatment, so I am trying to eat a little dairy to get more protein, but as its been so long since I had dairy I find it makes me a little nauseous so I am returning back to soya. I am reluctant to eat too many sugary things as sugar is not good for cancer.I hope you tolerate the chemo Bernie, I do remember when I was on that one that I did get aches in my legs and felt very tired, the anti sickness tablets did help with preventing me being sick. You may well lose your hair, but there are so many nice hats and scarfs and the upside of it is that you will not have bad hair days for a while!!! :)Ginger tea and ginger capsules are good for helping keep the sickness at bay.God bless, I will be thinking of you on Wednesday,Your friend,Lin  Angel of Hope Thu, 03 Jul 2008 00:00:00 GMT