CancerCompass message board discussion started by irenerum601 on 5/14/2008 http://www.cancercompass.com/message-board/message/all,24014,0.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/ Hi, I am Irene, 55 years old, diagosed july 2006 at Memorial Sloan Kettering in Manhattan, NY. Had surgery, debulking, etc. stage 111c. Did IP therapy and clincial trial of avastin until july 07 when I had a bowel obstruction and had to stop avastin. After all this aggresive treatment, was in remission until April 2008, 15 months. CT scan revealed early recurrence and CA 125 rising slowly. My initial ca125 was 30 a false negative when I was first set up for surgery. At current it is 70. At the same time I was diagosed, my middle sister also was diagosed with Stage 4, she is 3 years older than me.Our older sister was advised to remove ovaries and did immediately. Our mother 37, years ago. died of Ovarian Cancer within three months.  We were well aware of this dreadful disease and we followed our Gyn visits regularly but not aggressively. None of our Gny's were aggressive and gave no feed back to us.As of May 1, 08 started Armidex only for 9 days, had nausea and my oncologist switched to Famara. Anyone have any luck with Famara? Any side effects? I'm beginning to fell a little nausea again and extremely tired. I don't know if the tiredness is from depression also.  This disease is a mental game, never know when the next bomb will drop. It consumes every minute of your mind. I would love to know how woman have the courage and stamina to get going cheerfully.I wish anyone suffering from OC the best and peace of mind.Irenerum601  irenerum601 Wed, 14 May 2008 00:00:00 GMT Hi Irene, I'm Lin and was also diagnosed stage IIIc in April 2006. Like you had the  surgery debaulking etc. Have had three cycles of chemo..carbo/taxel, caelyx, and gem/carbo..although these three stabalized the condition at time of treatment as soon as I finish my CA125 climbs again! at the moment I am waiting for an appt re further surgery, known as interval debaulking.I was so sorry to hear that you lost your mum at such a young age and that your sister too has OC.( a friend of mine was diagnosed at stage 4 6 years ago and is doing well, she has a very good response to treatment) I have not heard about Famara but maybe it is called something else here in the UK. I will investigate. I have heard that Avastin works for a lot of people but here in the Uk it is down to funding!I do hope you are feeling well and be nice to keep in touch,Kindest RegardsLin Angel of Hope Thu, 15 May 2008 00:00:00 GMT Hello:My wife is in a similiar situation. SUrgery III C not debulkable, IP chemo and second surgery. SHe has a year to gradually regain her strength and now her CA125 is up and PET shows growths on the liver. She just started the OCEAN trial. Hopefully she is getting the Avastin in the trial and not the placebo.Both of our families have histories of cancer. Despite this, her phycians never mentioned a CA125 test until she demonstrated symptoms of advanced disease.There is a sin in this.This is a disease which can be whipped in if it is caught early. Why don't doctors administer the CA125 regularly as they do the PSA test for men after a certain age? Please advise all of your friends over 40 to ask their physicians to check their CA125 levels.Two of my wife's doctors were women, so I can't just blame male doctors.When I asked some doctors why they don't recommend it, they told me there were too many false positives. WHAT!!! A false positive is a great thing. Only and insurance copay would complain about that.It must have somethig to do with insurance incentives for doctors who moderate their test recommendations. Money is usually the driver of health care policy.I hope both of you have successful treatments and please join with me in prayig for the success of the doctors who are working to find an ovarian cancer vaccine. I pray that there is a reason for the crosses we are asked to carry. Good luck with your treatments and keep your senses of humor the best you can. Herpartner Thu, 15 May 2008 00:00:00 GMT  On 5/15/2008 Angel of Hope wrote:Hi Irene, I'm Lin and was also diagnosed stage IIIc in April 2006. Like you had the  surgery debaulking etc. Have had three cycles of chemo..carbo/taxel, caelyx, and gem/carbo..although these three stabalized the condition at time of treatment as soon as I finish my CA125 climbs again! at the moment I am waiting for an appt re further surgery, known as interval debaulking.I was so sorry to hear that you lost your mum at such a young age and that your sister too has OC.( a friend of mine was diagnosed at stage 4 6 years ago and is doing well, she has a very good response to treatment) I have not heard about Famara but maybe it is called something else here in the UK. I will investigate. I have heard that Avastin works for a lot of people but here in the Uk it is down to funding!I do hope you are feeling well and be nice to keep in touch,Kindest RegardsLinDear Angel of Hope:Nice to meet you Lin. I assume from your response your from the UK and Femara is used mostly for breast cancer patients same premise as tomoxafin. It's a estrogen inhibitor, which the research was done by cancer research UK. John F. Smyth, Prof of Med Oncology at University of Edinburgh led the research program. I believe this treatment strategy is just to hold off of chemo as long as possible. Iam sorry your CA rises so quickly. How did you handle your chemo treatments. In total how many did you have? Where you allergic ? My sister had 8 or 9 cycles of carbo/taxol, once every 21 days. I had IP treatments, which is a port in the stomach and given once one week in your arm vein, then 2 times the next week in the port in the stomach every 21 days. This was with Cisplatine/taxol and  I also had Avastin added in a clinical trial. These treatments were very rough. Had many side effects and only got 15mths of remission. My oncologist is trying to hold off of chemo but on June 20th I'll know if I start chemo again and he talked about carbo/gemzar. I see you took that how were your side effects. Did anyone in your family have this disease and how were you diaogised? Good luck with surgery. Keep the faith. Stay positive!My husband did alot of traveling to London with business five years ago.Been their once myself and I loved  it. We had such a wonderful time.We went in the month of December and weather was very cold. You conjurred up some wonderful memories. I hope to hear from you again,soon.  God bless, Irene irenerum601 Thu, 15 May 2008 00:00:00 GMT  On 5/15/2008 Herpartner wrote:Hello:My wife is in a similiar situation. SUrgery III C not debulkable, IP chemo and second surgery. SHe has a year to gradually regain her strength and now her CA125 is up and PET shows growths on the liver. She just started the OCEAN trial. Hopefully she is getting the Avastin in the trial and not the placebo.Both of our families have histories of cancer. Despite this, her phycians never mentioned a CA125 test until she demonstrated symptoms of advanced disease.There is a sin in this.This is a disease which can be whipped in if it is caught early. Why don't doctors administer the CA125 regularly as they do the PSA test for men after a certain age? Please advise all of your friends over 40 to ask their physicians to check their CA125 levels.Two of my wife's doctors were women, so I can't just blame male doctors.When I asked some doctors why they don't recommend it, they told me there were too many false positives. WHAT!!! A false positive is a great thing. Only and insurance copay would complain about that.It must have somethig to do with insurance incentives for doctors who moderate their test recommendations. Money is usually the driver of health care policy.I hope both of you have successful treatments and please join with me in prayig for the success of the doctors who are working to find an ovarian cancer vaccine. I pray that there is a reason for the crosses we are asked to carry. Good luck with your treatments and keep your senses of humor the best you can.Dear Herpartner:You are a wonderful,caring and devoted husband and person. I will pray for you and your wife. You are so right about the insurance policies. I too never had a ca125. This silent disease is a hush hush. I guess we have to be pro active for our own bodies.  I have a 27 year old daughter is going to be check next week by a gyn-oncologist at Memorial Sloan Kettering in NYC,NY.I feel her gyn will not be as aggressive since she treated me also.  Try not to give up hope, but also take care of yourself during this trying time. Like you, I am lucky to have a loving husband who is with me every step. Your wife is a lucky woman. irenerum601 Thu, 15 May 2008 00:00:00 GMT How kind of you to reply, I do hope your wife responds well in the trial and I wish her all the best. This is a terrible desease and the crazy thing is when we are on our "good weeks" in between treatment we can feel really quite well that it is hard to comprehend that we have OC. If they can send a man to the moon, do successful transplants etc, why can't they now be able to stop the blood supply to these tumours! after all we are talking about cells which they can do other incredible things with cells, create babies and cloning etc...it is just so frustrating!!! we are all still of a young age where we should be able to look forward to years with our families.My love and best wishes go out to all OC sufferers and their carers. Angel of Hope Thu, 15 May 2008 00:00:00 GMT How kind of you to reply, I do hope your wife responds well in the trial and I wish her all the best. This is a terrible desease and the crazy thing is when we are on our "good weeks" in between treatment we can feel really quite well that it is hard to comprehend that we have OC. If they can send a man to the moon, do successful transplants etc, why can't they now be able to stop the blood supply to these tumours! after all we are talking about cells which they can do other incredible things with cells, create babies and cloning etc...it is just so frustrating!!! we are all still of a young age where we should be able to look forward to years with our families.My love and best wishes go out to all OC sufferers and their carers. Angel of Hope Thu, 15 May 2008 00:00:00 GMT  On 5/14/2008 irenerum601 wrote:Hi, I am Irene, 55 years old, diagosed july 2006 at Memorial Sloan Kettering in Manhattan, NY. Had surgery, debulking, etc. stage 111c. Did IP therapy and clincial trial of avastin until july 07 when I had a bowel obstruction and had to stop avastin. After all this aggresive treatment, was in remission until April 2008, 15 months. CT scan revealed early recurrence and CA 125 rising slowly. My initial ca125 was 30 a false negative when I was first set up for surgery. At current it is 70. At the same time I was diagosed, my middle sister also was diagosed with Stage 4, she is 3 years older than me.Our older sister was advised to remove ovaries and did immediately. Our mother 37, years ago. died of Ovarian Cancer within three months.  We were well aware of this dreadful disease and we followed our Gyn visits regularly but not aggressively. None of our Gny's were aggressive and gave no feed back to us.As of May 1, 08 started Armidex only for 9 days, had nausea and my oncologist switched to Famara. Anyone have any luck with Famara? Any side effects? I'm beginning to fell a little nausea again and extremely tired. I don't know if the tiredness is from depression also.  This disease is a mental game, never know when the next bomb will drop. It consumes every minute of your mind. I would love to know how woman have the courage and stamina to get going cheerfully.I wish anyone suffering from OC the best and peace of mind.Irenerum601 Hi Irenerum601,   I read your request for an ans. and tho I have never been on Famara, I do have a question.   I was on Taxell/carboplaitin with my first diagnosis and was in remission for 3yrs and was only a stage 1.  It came back with a vengence last April.  Used Taxell and Carbo again for 8 treatments, went back into remission for 6 mo and have it again but not as bad....am on doxil but I have this weird feeling it isnt working altho I have only done one treatment so far.  Just one of those women intutions we get.   But they say you have to give it at least 2-3 trys to see what it is doing....I will be doing the lab  work next week and I will pretty much take a guess then.  My question is...did they try the above on you?    Did the chemo's cause your bowel obstruction?   Will wait to hear and the very best of luck to you with prayers and I know the mental and emotional strain it can put on us.....curly66   curly66 Thu, 15 May 2008 00:00:00 GMT I am awaiting a second surgery to remove more lymph glands.  Originally diag. stage 3c in Jan 2007.  Had  surgery, chemo and study drug, but ct showed   enlarged nodes.  Uncertain about surgery and radiation or more chemo.  Appreciate any thoughts on surgery. 41gram Thu, 15 May 2008 00:00:00 GMT Hi curly66How are you? Please hang in there. I know its hard to have a positive attitude. No, I had cisplatin and taxol for 18 treatments. 3 xs every 21 days for 6 cycles. I am in a recurrence now but waiting for chemo, first seeing if an estrogen inhibitor works first for 6 weeks. the waiting game.I also have a negative vibe that chemo with probably be next.No, I don't think the chemo caused my bowel obstruction. Doctors said it was scar tissue from my first surgery. I think it might have been from the Avastin I was given with my chemo and a combination of  scar tissue. Go figure. They never commit. Be brave and feel better. good luck to you and bless you.irene irenerum601 Thu, 15 May 2008 00:00:00 GMT  On 5/15/2008 irenerum601 wrote:Hi curly66How are you? Please hang in there. I know its hard to have a positive attitude. No, I had cisplatin and taxol for 18 treatments. 3 xs every 21 days for 6 cycles. I am in a recurrence now but waiting for chemo, first seeing if an estrogen inhibitor works first for 6 weeks. the waiting game.I also have a negative vibe that chemo with probably be next.No, I don't think the chemo caused my bowel obstruction. Doctors said it was scar tissue from my first surgery. I think it might have been from the Avastin I was given with my chemo and a combination of  scar tissue. Go figure. They never commit. Be brave and feel better. good luck to you and bless you.irene Hi Irene,,,,,great hearing from you....I have been on the computer all day doing some research.   I went to the CTCA for info and got these sites and numbers to check out so I want to forward them to you.    National Cancer Institute  1  800  422-6237.    Ovarian Cancer National Aliance  1  866-  399-6262.     Ovarian Coaltion  1  888  682-7426    www.ovarian .org.    Hopefully others are on this website and can use these numbers and websites.    Nothing ventured nothing gained!!     I also went in and read all there was on Lorraine Day, I'm still pondering over all that I read.   But I do believe the immune system is what we have to concentrate on plus our faith in God.    Keep me posted and many prayers for you....one day at a time, that's how we have to live right now.   Curly 66 curly66 Thu, 15 May 2008 00:00:00 GMT  On 5/15/2008 irenerum601 wrote:Hi curly66How are you? Please hang in there. I know its hard to have a positive attitude. No, I had cisplatin and taxol for 18 treatments. 3 xs every 21 days for 6 cycles. I am in a recurrence now but waiting for chemo, first seeing if an estrogen inhibitor works first for 6 weeks. the waiting game.I also have a negative vibe that chemo with probably be next.No, I don't think the chemo caused my bowel obstruction. Doctors said it was scar tissue from my first surgery. I think it might have been from the Avastin I was given with my chemo and a combination of  scar tissue. Go figure. They never commit. Be brave and feel better. good luck to you and bless you.ireneHi Irene...  My oncologist has me on estrogen...I had GCT removed with total hysterectomy in Jan of this year.  I'm desperately trying to find out if Estrogen is the way to go..      SusieB Tue, 20 May 2008 00:00:00 GMT Irene, I have had good luck with Femara so far. email me if you have specific queations. ladyleelink Thu, 12 Jun 2008 00:00:00 GMT Nice to hear from you ladyleelink. You mentioned Femara is working for you. Bless you. If you care to share your history I would appreciate it. Did you have ovarian cancer?Stage?Treatment? Any side effects from Femara?How long are you on it? Thanks for sharing. Irene irenerum601 Thu, 12 Jun 2008 00:00:00 GMT Hi! you said your having good luck with femara, that's great. Are you taking it for ovarian cancer or breast cancer? looking for anyone taking it for recurrent ovarian cancer. Any info? Thank you. irene irenerum601 Thu, 19 Jun 2008 00:00:00 GMT