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Stage3 ovarian cancer

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Hello I am new to this website and would very much appreciate any information I can get. My mother was diagnosed with stage3 ovarian cancer in July 2007. She had a hysterectomy and both ovaries removed followed by 6 cycles of chemo. Several weeks ago her ca125 level increased and 2 small masses were found on her pet scan. Just this week she had her second surgery and cancerous nodules were found on her sigmoid colon. As expected her doctor said that she would need further chemotherapy. I am here looking for institutions that specialize in recurrent ovarian cancer. I have done research on md anderson and cancer treatment centers of america. If anyone has information on these or other institutions please let me know. Thank you for your time.

24 replies

my girlfriend loved CCA. She drove all the way from Florida to the one in Chicago. She said they treated her whole person (she has recurrent ovca). She was provided with a nutritionist (to help her learn to eat better--she loves her sugar), a psychologist (said she had LOTS to work out and really appreciated that), her doctor had experienced breast cancer and was able to identify with her. There was also a chiropractor, etc. She was given a standard chemo for recurrent cancer, but was most impressed with the smiles, the concern she received from everyone up there.

I live in Houston and know many people who are treated at MD Anderson. As I'm sure you know it has a worldwide reputation as being the best. Many cities in Texas have a branch of Texas Oncology. I'm treated by one of the TO docs as well as a gynecologic oncologist, both of whom have ties to and affiliations with Anderson. I've been living with stage IIIc since 1998 and have had 2 recurrences. Your mother will be in my prayers.

Welcome to the site. Sorry your mother has to go through this again, but it is a common thing with ovca and most of us have had recurrences.

You don't have to travel to get treated for a recurrence. unless you feel there is a special need. If her local cancer center/hospital is a good one and you are satisfied with the care there, she can get treatment there again. I'm IIIC and have had this cancer for 8 1/2 years and am now in my second recurrence - my treatment is still at my local cancer center and they are very good.

I wish the best for your mother and hope she gets back into remission soon. Good luck with everything.

I just noticed you are in Brooklyn. Does your mother live there too? If so, you have Memorial Sloan Kettering right in Manhattan if you feel the need for another hospital. I also live in NYC and a friend of mine goes to NYU Medical Center for her treatments.

Hi,

If your mother lives in New York then I would suggest that you contact Memorial Sloan Kettering. They are running several clincial trials to treat women who have had recurrences. I have been going there since 2/06 and and have been in a trial since 1/07 and so far I am doing fine.
Best wishes to your mother.

Katie

Thank you all for your responses and its very much appreciated. My mother lives in Miami and I am visiting from NY. She has asked me to do research on different institutions for recurrence since she is willing to travel. Does anyone have information about vaccine trails on recurrence? Thank you all once again for your help.

I was diagnosed with 111C ovc early Nov 2008 and have had 2 surgeries and 6 chemo treatments. If you don't already know about Ricardo Estape at South Miami GOG, I highly recommend him. His office specializes in ovarian cancer and I have been very pleased with the care I have had there. Dr. Estape is extremely knowledgeable and takes the time to explain technical aspects of treatment and options to you.

I also recommend a book "Natural Strategies For Cancer Patients" by Russell L. Blaylock, MD. I am hoping to postpone a recurrence for many years if not permanently by following recommendations on diet detailed in his book.

You didn't say where your Mom lives.

According to the CTCA site there is only one Gyn Oncologist listed and she is at their Chicago site. If you search their website they only have one clinical trial for Ovarian Cancer.
http://www.cancercenter.com/cancer-doctors/specialties/gynecologic-oncology .cfm

Most teaching hospitals in your area will probably participate in GOG studies along with pharmaceutical clinical trials.

I have attached a link to the NCI's list of Cancer Centers.
http://cancercenters.cancer.gov/

Hi!

I'm actually (and very sadly) in the exact same boat as you! My mom was diagnosed with stage 3c on 12/4/2009 and had surgery 4 days later.

I have done tons of research on this, and I finally decided to take my mom to Fox Chase in Philly (we honestly should have gone there first). We saw Dr. Michael Seiden, who happens to be the president, and who works exclusively with ovarian cancer. He's beyond brilliant... and his honesty really opened our eyes to the reality of the illness. The next day I called both Sloan and Dana Farber to try to get third opinion appointments and they told me if we had seen Dr. Seiden... we had already seen one of the best. If you want all of his information, feel free to e-mail me! :)

If you ever need someone to talk to, please don't hesitate to e-mail me. This is a very tough battle, but I know together we can all get through it! :)

Lots of love :)

I was diagnosed with stage IIIc ovc, on Feb. 9th, my fourth chemo treatment is scheduled for June 5th. So I am fairly new to this site.

I'm sorry I don't have any information that can help your mother so I will pray that she gets the help that she needs to get better. And you are a special daughter, so I will pray for you too.
xxxooo,
Esther

I have also stage IIIc and a second recurrence but not a second surgery. I went through 2 rounds of Chemo. I am now on Tamoxifen. My CT scans show no tumors but my Ca125 has been gradually rising again. I go to Texas Oncology in Austin Texas. My obgyn/oncologist Dr. EB Smith is just the best. It would be best for your mother to find somewhere close to where she lives. MD Anderson is excellent but Texas is a long way from NY. Sloan is also excellent. I will put her in my prayers. Judith

I went for a second opinion at MD Anderson and saw an incredible man there-Dr. Coleman. He spent over 2 hours with me discussing my case, the research, clinical trials, the next big thing will be enzymes for people with the BRCA gene. I have the gene and feel extremely hopeful for all women with ovarian cancer because of the amount of research that is going into preventing and treating OC for those of us with a genetic predisposition and those who don't. MD Anderson is an incredible place and the staff if outstanding. I went there from Seattle and it was totally worth it to me. Now I will be treated here, but with the comfort of knowing a number of great minds have consulted on my case.

If you are looking for vaccine trial, Iam at univ. of PA with dr cuokos.He is beyond the run of the mill onc.He thinks outside the box and is brilliant.I had sugerey to remove remaining turmor my onc. wouldnt do.By the way that was at abington and they only go by what protocol suggestes and do nothing to personalize your treatment.with that he made up the vaccine.I have to do chemo again starting wed with carbo/gemzar for three rounds because I have rice size tumors on my abdomen and colon and is localized.Thank god.When that is done I will be injected with the vaccine made from my own cells.Amazing shit out there!Keep Positive.

Hello,
I'm also in stage 3C discovered on december 2007. After one surgery, 4 taxo+carbo, a second surgery called laparotomy and 4 taxol, after 2 months my CA rised at 200 in december 2008.
I begun chemo Gemox + avastin (3 times) from january 2009 each fifteen days and my CA felt down until 20. But when they stopped chemo gemox my CA125 rised until 250.
I restarted chemo on last monday.
They told me that i have a reccurent form without possible stop.
Then i am very interessed to know anybody knows if it exists any treatment that could give any pause.
I am also looking for survivals in the same situation in order to know a little more about my possible futur and to spent as many time as possible my time with my nice friends and my family. I am not afraid i just think how to manage my pains.
Thanks a lot to read me and to be all together.
Peace and respect for all of you.
Michèle (from Paris)

Please get on the Clearity Foundaytion.org web page
I heard the founder speak in March she herself is a cancer survivor. Laura Shawver PhD. is researching
how mapping the tumors can help decide what chemo
works best. I had my grandulosa ovarian tumor mapped. She is starting a data bank for tumor markers.

thanks a lot
I hope my oncologist will agree with this procedure
Good luck to you
Michèle

I was diagnosed with OV3c in 04. Had my debulking in April 05 and have been on many chemos since then. Now I am in a clinical trial at NIH - National Cancer Center in Bethesda, MD. Phone # is 301-496-3331. Also contact John's Hopkins Cancer Center in Baltimore, MD.

Good luck to your Mom.

so your mom has not seen any remission yet? When I had my surgery in SEPT08 I had stage 3 but just before I started chemo it went to stage 4 with a tumor under my left arm (it was the size of a golf ball, and now the tip of a pencil eraser). I had 7 runs of chemo, carbo & taxol and my CT scans are still terrible; the lowest my CA125 got was 65 before it started back up again. I have now started on Doxil. Things WILL get better for your mom.

There was a woman from PA (Christine Sable) who after she got into remission, went to Roswell Park in Buffalo, NY for vaccine treatments (15 of them) to keep her in remission. Her story is awesome. Check it out @ www.roswellpark.org or google her name. It certainly leaves us with something to "dream for".

I'm going to Abington now and I am a IV ovarian with full hysterectomy and 1 round of chemo, I was on the taxol and carbo (double blind avastin study)

I just had my ca125 go up starting in march 09. It was 5 or lower for 19 months after chemo and now it went from 40-48, then 66 in April and 152 in May. Who was your doctor at Abington? I was interested in the vaccine trial and thought it sounded like it was only for people with no other treatment alternatives. I just found out now have a 1cm growth under my colon and another 3 cm growth on my left pelvis. Do you think I could benefit from the vaccine trial. I work in Philly but live in the surburbs. I was very interested when you discussed this trial.

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OCNA: Support Ovarian Cancer National All... by voting for them to win $25k with #chasegiving. Please fan, vote, and RT! http://bit.ly/7RNW3

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OCNA: @JanetJackson ABC Special with Janet Jackson tonight at 10:00pm EST http://www.ovariancancer.org/2009/11/18/abc-special-with-janet-jackson/

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