CancerCompass message board discussion started by Desert Mermaid on 6/2/2007 http://www.cancercompass.com/message-board/message/all,12718,0.htm Sat, 19 Jul 2008 00:00:00 GMT Sat, 19 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello, Everyone ... I'm new to this and would appreciate any information regarding the best or leading doctors for ovarian cancer, specifically gynecologic oncologists who are leaders in the ovarian cancer field. I'm in the initial stages of an ovarian cancer evaluation and would like to have that first surgery and/or biopsies with the "best one" since the first surgery is so crucial.I am able to travel anywhere for medical care and treatment so location isn't a factor.Also, does anyone know of any site that lists the top doctors and/or cancer centers for ovarian cancer?Thank you in advance, and I wish you all the best.~Victoria  Desert Mermaid Sat, 02 Jun 2007 00:00:00 GMT Victoria,I was diagnosed with 3a oc in feb.2006.  Several doctors, as well as the CEO of another hospital recommended Dr. John Loveccio, the head of the department (oncology/gynocology) at North Shore Manhasset Hospital. He performed my surgery and recommended me for io chemotherapy, and I am now in remission.  Another good doc is Dr. Chalice (I think that's how you spell her name) at Stonybrook University Hospital.  My sister went to her and she's cancer free 14 years after being diagnosed 3c.  She's on the board of gynocological/oncology  group, but I can't remember what one.  Both doctors and hospitals are on Long Island in New York.   Good luck. Jayneb1 Sat, 02 Jun 2007 00:00:00 GMT hi! i was diagnosed in june 2006 3c: my question is more about your sister: what treatment did she have by this dr. chalice? & how come you didn't go to her? what treatment did you have? i only got the iv taxol+carboplatin & the wait & see therapy !regards, harriet Harrietg. Sun, 03 Jun 2007 00:00:00 GMT another thing: if your sister had it, did you do genetic testing? harriet Harrietg. Sun, 03 Jun 2007 00:00:00 GMT Hi Victoria,  I have been under treatment for fallopian tube cancer, which is treated like ovarian cancer, for 5 1/2 years.  I was initally treated by what was supposed to be the best in my state, Florida.  I went to Shands Hospital at the University of Florida.  Unfortunately, I spent 4 years of treatment and recurrence with no doctor willing to try anything new or different.  My only regret is waiting that long before going to The Cancer Treatment Center of America.  The minute I got there I knew that was the place to be.  The doctors are wonderful, caring, understanding  and knowledgable of all the newest drugs and techniques out there.  I see Dr. Williams.  There are 4 CTCA and they will tell you which one they will send you to.  I go to Chicago.  It is wonderfully unlifting to go the CTCA as they treat the whole body and mind, not just the cancer.  They give you hope as do the other patients there who were given 6 months, went to CTCA, and are celebrating 6 years!Ovarian cancer is a real battle and you are so smart to research your options before jumping in with both feet.  I believe if I had done the research you are doing I would have gone to the CTCA right off and not have had the recurrence's that I have had.My prayers and thoughts are with you and I wish you only the best.  Good luck in all you research and recovery.Judy Turtlebugs3 Fri, 20 Jul 2007 00:00:00 GMT  On 7/20/2007 Turtlebugs3 wrote:Hi Victoria,  I have been under treatment for fallopian tube cancer, which is treated like ovarian cancer, for 5 1/2 years.  I was initally treated by what was supposed to be the best in my state, Florida.  I went to Shands Hospital at the University of Florida.  Unfortunately, I spent 4 years of treatment and recurrence with no doctor willing to try anything new or different.  My only regret is waiting that long before going to The Cancer Treatment Center of America.  The minute I got there I knew that was the place to be.  The doctors are wonderful, caring, understanding  and knowledgable of all the newest drugs and techniques out there.  I see Dr. Williams.  There are 4 CTCA and they will tell you which one they will send you to.  I go to Chicago.  It is wonderfully unlifting to go the CTCA as they treat the whole body and mind, not just the cancer.  They give you hope as do the other patients there who were given 6 months, went to CTCA, and are celebrating 6 years!Ovarian cancer is a real battle and you are so smart to research your options before jumping in with both feet.  I believe if I had done the research you are doing I would have gone to the CTCA right off and not have had the recurrence's that I have had.My prayers and thoughts are with you and I wish you only the best.  Good luck in all you research and recovery.Judyhi judy,i am a 1-year survivor of ov ca 3c: what ground-breaking treatment did u get at CTCA? i am still looking for a maintenance therapy!harriet Harrietg. Sat, 21 Jul 2007 00:00:00 GMT Hi Harriet,With me what happened is that I was given carbo-platin/taxol when first diagnosed.  I had a severe reaction to the carbon on my 8th chemo, (i was supposed to have 11), so they stopped giving it to me and told me I had plenty.  I had a recurrence a year later and they gave me cysplatin/taxol and had an even worse reaction.  I didn't think I would make it through that time.  So, my doctor at Shands had me get radiation instead.  Well, 11 months later it was back.  I had my third surgery.  My doctor said there really wasn't a lot of options except for the carbo-platin.  They did some research on how I could recieve it and it started that they would pump me with steriods and other pre-meds, give me my chemo very slow and then each time increase the speed.  I begged them not to increase the speed as it worked when it was given to me slowly.  They wouldn't listen and sure enough on my 2nd round I once again had a very bad reaction.  Luckly, I was in intensive care when it was being given to me.  They stopped it right away (around 7 p.m.) and the next morning they again administered all the pre-meds, (a ton of them), gave me my chemo very slowly and it worked.  Two days later I was so sick that I thought I might die.  I later found out it was from the double dose of pre-meds. They never gave that a thought.   At that point I decided to go somewhere else and that's when I went to CTCA.  They felt that at the point I was at they would have to finish with the carbo but first I had a full body scan.  They would place me in intensive care to administer it and it would take at least 10 hours but I got through it.  They had told me then that I had so many other chemo options but because of where I was with the carbo they were going to complete it.  In the meantime, they gave me so much more information on my cancer, the possible treatments and they also felt that it was very important for me to be scanned every 3 months due to the fact that my tumor markers were never elevated.  My local doctor wouldn't give me a scan that often, she wanted to wait 9 months.  She also wouldn't order a PET scan for me which CTCA said was very important.  6 months after my last treatment, which was ordered by my local doctor, my cancer was back.  4th time!!!!!  CTCA immediately put me on a different chemo which they can't guarentee will work but feels It was something that I should have tried earlier.  They also have a special radiation that can be given to the exact same place I had it before if needed.  They studied my cancer and told me what vitamins I should take which may help in holding my cancer off.  They don't take anything for granted.  If they see a speck of anything in my scans they are on it.  My old doctor felt it was best to wait 3 4-months and then re-check before doing any treatment.  I really mean it when I say that when I went there they gave me back my life.  They spoke to me about living with cancer and not dying with it.  I was very, very depressed when I got there and by the time I left I felt like a new person.  My only regret is that I only go there every 3 months because when I leave there, after talking to all the other patients, I know that I can beat this or at least live with it.  I really have met many people there that were going somewhere else and given just months to live and that was years ago.  They all swear that the CTCA it what saved them.I know this is going on and on but really my old doctor, "who is the best",  probably would have chalked me up by now.  If you go the CTCA your 1st visit is really just to meet the doctors and get their opinions.  There are no obligations.  They fly you there and the first time they also fly a caregiver or whoever you choose to come with you so that there is an extra pair of ears. I am so thankful that I went there.I wish you only the best.  I know how devastating this is.  With mine being fallopion tube it is harder to treat as it is a rare cancer. I was diagnosed at 51 and I'm 57 now.  I am doing great, this chemo is much easier on me than the other and I've completed my 5th round.  It's called Doxil.  They want me to get 12 rounds of it, 1 a month.  If after next month (my 6th chemo) they don't see that my tumor has shrunk, they are going to put me on something else,  The difference with CTCA is that they didn't let my tumor grow for months.  They began treatment immediately.  When I waited 3 months with my local doctor it had doubled in size.  I had a scan after 3 of my Doxil chemos and, unfortunately, it didn't shrink but it didn't grow.  That was good news for me since I know that under the old circumstances it would have grown. Good luck, keep me posted as to how you are doing.  How long have you have your cancer and what have you done so far.  From what I understand, even ovarian cancer is treated differently for each patient.Judy Turtlebugs3 Sat, 21 Jul 2007 00:00:00 GMT hi! just plain old ov ca 3c! dx'ed last june, had the surgery & 6 rounds of carboplatin+taxol which i responded to very well: from a ca125 of 3200+ down to 8 at the end; then down to 5, now creeping up slowly: 6.5 so i'm getting the jitters! since the ca is so low i get no maintenance at all (i live in europe); they also don't like the ip version so dont give it; there was one trial ongoing with tarceva as maintenance but i fell into the standard arm & didnt get it! if it works or not is a major question as they wont divulge any results! so i dont take it & feel fine, a friend of mine took it & progressed! so i suppose that messes up all the statistics! she is also getting doxil now; another friend took that & it didnt help her at all! so every cancer is different & every body responds differently! i also went to an orthomolecular dr. (the vitamin quack i call him!) who prescribed vitamins in such huge doses i felt it was exaggerated! 10x the normal amount! so i take what i figure is enough! which vitamins are u taking? he wanted me to take 9 life extension multi vits/day + D+soya(i'm not convinced that is good for me as i'm brca-1!)3xQ10, 3x omega 3, iodine drops because he felt my thyroid was low (it was still in the normal range), cruciferous veg. for the indole-3, 3mg vit c, etc...; i am taking noni juice in case its of any help! did u read ernie's story in the lung cancer section?he takes even more supps but is definitely in good health! i didnt take the iv's vit c, my onc feels it might cause kidney stones! that's it in a nutshell! keep me posted on how u r feeling; keep positive! i like to get jokes from my friends: laughter is the best medicine! i was corresponding w/ someone in the same predicament but i havent seen her on in a long time, fran, have u come accross her? Harrietg. Sun, 22 Jul 2007 00:00:00 GMT i forgot: my onc keeps saying i do not need a pet scan! i even brought him all the latest news from the asco meeting in june where they said its complementary to ct! its about the only thing we dont agree on!harriet Harrietg. Sun, 22 Jul 2007 00:00:00 GMT My dad is having a recurrance of pancreatic cancer after22 months postsurgery.  Where is CTCA and do they treat this type of cancer too?He should be starting a new round of treatment shortly, so please respond asap since we want to explore all options. thanks in advancePeggy mimsmom Sun, 19 Aug 2007 00:00:00 GMT  On 8/19/2007 mimsmom wrote:My dad is having a recurrance of pancreatic cancer after22 months postsurgery.  Where is CTCA and do they treat this type of cancer too?He should be starting a new round of treatment shortly, so please respond asap since we want to explore all options. thanks in advancePeggyHi Peggy, So sorry to hear about your father.  CTCA is The Cancer Treatment Center of America and yes, they do treat pancreatic cancer.  That's what's so great about CTCA.  They have doctor's that specialize in every kind of cancer and you don't just get a doctor that treat's all kinds of cancers.  It is truly worth a call to them and an initial trip to speak with them and let them evaluate your Dad.  Nothing to lose and a lot of hope to be given.Best of luck to you and your family.  Be strong for your Dad because it is very hard to be brave, strong and upbeat when you have no one to support you.Judy Turtlebugs3 Sun, 19 Aug 2007 00:00:00 GMT