fallopian tube cancer
Doloresl
Comments
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Hello Dolores
Hey ... another Fallopian Tube Gal here!! I was diagnosed in May of 02. I've had three rounds of chemo and will be starting my fourth very soon:( Believe it or not there is a lot more information along with trials now than there was 7 years ago. Can I ask how you were diagnosed? Congrats how low your CA is. My first two rounds were with Taxol/Carb and my third was with Cisplatin/Gemzar. I had a total hysterectomy plus my tumor was so large that it grew around my bowel and colon - so they needed to resection my bowel and take part of my colon.
Lea0 -
Fallopian tube Cancer
Please see my profile:
November
I am going on two years of NO chemo, diagnosed with Stage III Primary fallopian tube cancer.
Send me message if you'd like, I don't sign on often, but happened to just sign on.
Sending you big smiles & hugs.......
It's a rollercoaster ride!
Don''t forget to check out cancercompass.com
navigation of message boards might be easier........0 -
Fallopian Tube CancerNovember said:Fallopian tube Cancer
Please see my profile:
November
I am going on two years of NO chemo, diagnosed with Stage III Primary fallopian tube cancer.
Send me message if you'd like, I don't sign on often, but happened to just sign on.
Sending you big smiles & hugs.......
It's a rollercoaster ride!
Don''t forget to check out cancercompass.com
navigation of message boards might be easier........
It's been three years since the end of chemo for Stage III fallopian tube cancer, 3 1/2 years since diagnosis. Have felt great and CA-125 has stayed low, but now starting to wonder about it returning. Had to get good information on prognosis.0 -
fallopian tube cancer
I was diagnosed with fallopian tube cancer Stage IV in January this year. I had breast cancer 37 years ago and second primary 20 years ago. On my routine visit to the oncologist in December my tumer marker was elevated. He suspected a recurrence of breast cancer. Had CT scan which showed involvement of abdominal lymph nodes. Biopsy came back breast cancer. My oncologist questioned this and sent me to gynocological oncologist who recommended complete hysterectomy to see what was going on. That's how the FT cancer was diagnosed. I have had 3 treatments of taxotere and carboplatin with three more to go. My CA125 went from 489 to 40 after the second treatment. Happy to see you are doing well. Don't know anyone else with this diagnosis.I had no symptoms. How was yours diagnosed?0 -
fallopian tube cancerZoup said:Fallopian Tube Cancer
It's been three years since the end of chemo for Stage III fallopian tube cancer, 3 1/2 years since diagnosis. Have felt great and CA-125 has stayed low, but now starting to wonder about it returning. Had to get good information on prognosis.
Zoup
Glad to hear you are doing so well. Do you have scans or just blood work to follow up?0 -
fallopian tube ca - x2
Dolores,
I was orig diagnosed in Aug of 06 when I went in for a hysterectomy. I had one of the classic signs but becuase this cancer is not seen - no one knew till day of surgery.
Clear drainage that became heavier - also bloating, very tired all the time etc.
I had Stage 1B but Grade 3 tumor. They did total hyst, and lymphnode disect. (nodes were clear)Did chemo taxoterate and carbo - By the way did i mention my CA125 was only 15 at time of diagnosis - this lab is only 50% accurate (kinda scary)
About 6mos ago, I started having lower back pain, a little tired nothing like last time but felt something wasn't right. On routine examine, clear, but CA-125 was elevated. It always hovered around the 20's even a year or two after orig treatment. But it was 30 then 35 then 85, PET/CT confirmed re-occurance next to Aorta and spine - Options were surgery and chemo or chemo and poss cyber-knife. I chose the 2nd, the surgery proposed was risky and recovery hard.
Am doing Taxo and Carbo but they added Avastin(new biologic) Its been a rough go this time around.
In regards to info, there is so little because there are so few cases - most women diagnosed are in there later 50-60's, and sometimes when it is caught, it is more advanced and they don't know what the primary was - God Bless0 -
Fallopian tube cancerPatricias4dragonflys said:fallopian tube ca - x2
Dolores,
I was orig diagnosed in Aug of 06 when I went in for a hysterectomy. I had one of the classic signs but becuase this cancer is not seen - no one knew till day of surgery.
Clear drainage that became heavier - also bloating, very tired all the time etc.
I had Stage 1B but Grade 3 tumor. They did total hyst, and lymphnode disect. (nodes were clear)Did chemo taxoterate and carbo - By the way did i mention my CA125 was only 15 at time of diagnosis - this lab is only 50% accurate (kinda scary)
About 6mos ago, I started having lower back pain, a little tired nothing like last time but felt something wasn't right. On routine examine, clear, but CA-125 was elevated. It always hovered around the 20's even a year or two after orig treatment. But it was 30 then 35 then 85, PET/CT confirmed re-occurance next to Aorta and spine - Options were surgery and chemo or chemo and poss cyber-knife. I chose the 2nd, the surgery proposed was risky and recovery hard.
Am doing Taxo and Carbo but they added Avastin(new biologic) Its been a rough go this time around.
In regards to info, there is so little because there are so few cases - most women diagnosed are in there later 50-60's, and sometimes when it is caught, it is more advanced and they don't know what the primary was - God Bless
Hi Patricia4dragonflys,
I was diagnosed with fallopian tube cancer about the same time you were-7/06. Did the standaerd surgery/chemo/radiation and my gyn-onc followed up with serial CA-125's which were ALL NORMAL (less than 15) until the cancer had spresd to my lymph nodes in my neck and who knows where else. DON'T TRUST IT!!! Did more chemo and radiation and when that failed she recommended in 5/09 that I quit treatment and enjoy the summer cause it will be my last. I fired her and had a molecular profile done at Caris labs and started treatment based on what they found. I could feel the tumors regressing in two days! Well, I am now about to start my 7th round of chemo, after 83 radiation treatments ans 13 chemo drugs, and was wondering if ANYBODY knows how to treat this thing??? I an determined to beat this in spite of the odds but am getting very frustrated doing my own research and calling the shots. I would much prefer, of course, to find a treatment that is working. Any ideas?? Anybody??0 -
FTC
Hi DOlores How r u doing? I would love to hear your story...my mom dx in 07 ftc IIIB complete hysterectomy with rididual disease 2mm let on rectum did carbo/taxol for 8mos then taxol for one year.....it has been 3.5 yrs and Ca-125 creaping 17-27 PET scan shouwed 4 sm tumors they recomended a study and did a ct scan found another tumor but still a surgical pt for the study.....study kicked back chemo only....carbo/taxol I am scared that she is a surgical candidate now but if chemo does not work in 3mos a PET scan what if CA grows and she is not a surgical candidate......What is your story. I wish you luck in your battle with this awful disease....
Jeanne0 -
Hi Jeanne, It will be 2jfr81415 said:FTC
Hi DOlores How r u doing? I would love to hear your story...my mom dx in 07 ftc IIIB complete hysterectomy with rididual disease 2mm let on rectum did carbo/taxol for 8mos then taxol for one year.....it has been 3.5 yrs and Ca-125 creaping 17-27 PET scan shouwed 4 sm tumors they recomended a study and did a ct scan found another tumor but still a surgical pt for the study.....study kicked back chemo only....carbo/taxol I am scared that she is a surgical candidate now but if chemo does not work in 3mos a PET scan what if CA grows and she is not a surgical candidate......What is your story. I wish you luck in your battle with this awful disease....
Jeanne
Hi Jeanne, It will be 2 years next month since my last chemo. CT Scans continue to look good, but my CA 125 is the highest ever 7.8. Doctors say do not worry, but easier said then done. No signs of metastasis even tho it was in 5 of 15 lymph nodes removed at the time of my surgery. I year after my hysterectomy I developed 4 hernias on the site of the surgery, removed and patched the site with plastic!!
I have never had a Pet scan, but if the numbers continue to rise I will request one. I was fortunate that when I had my surgery in Nov 08 I had a gynocological oncology surgeon operate on me, I do have complete trust in her.
At present I am getting prepared to have both of my hips replaced due to severe arthritis. Will do one at a time and hope for the best.0 -
Diagnosed 6/2010
Hi I had a hysterectomy in June for benign polyps and was diagnosed IIIc we thought it was ovarian until the pathology came back. I was already doing six rounds of carbo/taxol when my Dr started referring to it as falopian tube cancer.
I had a ct/pet scan after the chemo in Dec. and it was all clear for falopian tube cancer with a ca125 of 2. I am now doing six rounds of Avastin for good measure. My ca125 is up to 9 now I know it's low but I don't like the direction it is taking.I can't wait for my next scan as my lymph nodes in my neck lit up on the last scan, the Dr isn't concerned about them but I will feel much better if the next scan shows no growth.
Wow we are a small group there is very little info on our disease. My Dr says it is treated the same as ovarian with similar outcomes. Good Luck you are doing great !
Colleen0 -
Same as OvarianCafewoman53 said:Diagnosed 6/2010
Hi I had a hysterectomy in June for benign polyps and was diagnosed IIIc we thought it was ovarian until the pathology came back. I was already doing six rounds of carbo/taxol when my Dr started referring to it as falopian tube cancer.
I had a ct/pet scan after the chemo in Dec. and it was all clear for falopian tube cancer with a ca125 of 2. I am now doing six rounds of Avastin for good measure. My ca125 is up to 9 now I know it's low but I don't like the direction it is taking.I can't wait for my next scan as my lymph nodes in my neck lit up on the last scan, the Dr isn't concerned about them but I will feel much better if the next scan shows no growth.
Wow we are a small group there is very little info on our disease. My Dr says it is treated the same as ovarian with similar outcomes. Good Luck you are doing great !
Colleen
don't you get tired of being treated as if we had something else! There are more of us FT's out there than we know. We do not even have our OWN RIBBON!! Yikes
Do you think we are overreacting or are the Drs. underreacting?? There are not a lot of stats out there, so I guess we are making new ones. We WILL SURVIVE
Dolores0 -
Another thought or twodolores1 said:Same as Ovarian
don't you get tired of being treated as if we had something else! There are more of us FT's out there than we know. We do not even have our OWN RIBBON!! Yikes
Do you think we are overreacting or are the Drs. underreacting?? There are not a lot of stats out there, so I guess we are making new ones. We WILL SURVIVE
Dolores
There are probably plenty of women who are being diagnosed and treated as ovarian cancer when the cancer probably started in the fallopian tubes and spread to the ovaries. The treatment seems to be the same as it is with primary peritoneal cancer--these are considered to be epithelial cancers.
The gyn/onc doctors are trying to get the OB/GYN doctors to start removing fallopian tubes when women want to have their "tubes tied" AND to remove the fallopian tube when a women has an suspicious ovary that needs to be removed.
I think the FTC ribbon should be teal & white striped.0 -
Diagnosed 9/2010Cafewoman53 said:Diagnosed 6/2010
Hi I had a hysterectomy in June for benign polyps and was diagnosed IIIc we thought it was ovarian until the pathology came back. I was already doing six rounds of carbo/taxol when my Dr started referring to it as falopian tube cancer.
I had a ct/pet scan after the chemo in Dec. and it was all clear for falopian tube cancer with a ca125 of 2. I am now doing six rounds of Avastin for good measure. My ca125 is up to 9 now I know it's low but I don't like the direction it is taking.I can't wait for my next scan as my lymph nodes in my neck lit up on the last scan, the Dr isn't concerned about them but I will feel much better if the next scan shows no growth.
Wow we are a small group there is very little info on our disease. My Dr says it is treated the same as ovarian with similar outcomes. Good Luck you are doing great !
Colleen
Hi fellow survivors.
Im new to this site today and happy that there are some women I can correspond with on this topic.
I was diagnosed a year after I started having pain in the area of my right ovary.. An Ultrasound was done in May 2009 but showed nothing. An Irregular Pap in August 2010 alerted my GYN to possibility of cancer. A Cat Scan showed a tumor on my Ureter that was blocking my right kidney. I had a full hysterectomy and tumor debulking. The diagnosis was Fallopian Tube cancer stage IV.
Ive had one round of Chemo...6 sessions of Taxol and Carboplatin which is I understand standard treatment for this type of cancer. Had a CAT & PET scan in early Feb 2011 that showed that unfortunately a tumor grew back in same spot during chemo, I just had a second surgery to debulk tumor and take tissue to send to Caris labs for testing to see what chemo will be effective.
Ive been doing a lot of research and reading now and have decided that Im going to approach this very differently this time. Im going to meet with the folks at Block Center for Integrative Cancer care near Chicago in early May. Dr Keith Block wrote an excellent book called LIFE OVER CANCER. They customize your treatment based on a sixteen page questionnaire I filled out. It includes diet as well as stress reduction and mind, body spirit techniques, also nutrition counseling also delivering the chemo when your body is receptive to it based on your natural cycle. The great hope in seeing them is that their survival rate is nearly double that of conventional treatment.
One thing I have cut out is sugar and meat. From the books i have been reading they could actually be feeding my tumor. I had huge cravings for sugar during treatment and had no idea that my diet might affect the tumor. Good article on this topic to read in NYT magazine April 13th 2011 on Sugar as a toxin, for diabetics as well as cancer.
As you can tell, Im more into Mind Body Spirit approach but have and will work with my conventional doctors. I now believe that I have to make the choice of whats right for me.
Ive found that my attitude is the most important thing that has kept me going and the support of family and friends has made me feel as loved as I have ever felt in my life. I feel grateful that my cancer was found and that I am finding the right people to connect with and treat me.
If anyone has any experience with Block center please share it.
Aloha,
Cynthia0 -
Cynthiakinikiamalia said:Diagnosed 9/2010
Hi fellow survivors.
Im new to this site today and happy that there are some women I can correspond with on this topic.
I was diagnosed a year after I started having pain in the area of my right ovary.. An Ultrasound was done in May 2009 but showed nothing. An Irregular Pap in August 2010 alerted my GYN to possibility of cancer. A Cat Scan showed a tumor on my Ureter that was blocking my right kidney. I had a full hysterectomy and tumor debulking. The diagnosis was Fallopian Tube cancer stage IV.
Ive had one round of Chemo...6 sessions of Taxol and Carboplatin which is I understand standard treatment for this type of cancer. Had a CAT & PET scan in early Feb 2011 that showed that unfortunately a tumor grew back in same spot during chemo, I just had a second surgery to debulk tumor and take tissue to send to Caris labs for testing to see what chemo will be effective.
Ive been doing a lot of research and reading now and have decided that Im going to approach this very differently this time. Im going to meet with the folks at Block Center for Integrative Cancer care near Chicago in early May. Dr Keith Block wrote an excellent book called LIFE OVER CANCER. They customize your treatment based on a sixteen page questionnaire I filled out. It includes diet as well as stress reduction and mind, body spirit techniques, also nutrition counseling also delivering the chemo when your body is receptive to it based on your natural cycle. The great hope in seeing them is that their survival rate is nearly double that of conventional treatment.
One thing I have cut out is sugar and meat. From the books i have been reading they could actually be feeding my tumor. I had huge cravings for sugar during treatment and had no idea that my diet might affect the tumor. Good article on this topic to read in NYT magazine April 13th 2011 on Sugar as a toxin, for diabetics as well as cancer.
As you can tell, Im more into Mind Body Spirit approach but have and will work with my conventional doctors. I now believe that I have to make the choice of whats right for me.
Ive found that my attitude is the most important thing that has kept me going and the support of family and friends has made me feel as loved as I have ever felt in my life. I feel grateful that my cancer was found and that I am finding the right people to connect with and treat me.
If anyone has any experience with Block center please share it.
Aloha,
Cynthia
I wondered how you were doing? I agree that a positive attitude is very important.
My doctor does not think I would still be here if it weren't for my positive attitude.
Please let me know how it goes after seeing Dr. Block.
Good Luck,
Lea0 -
Fallopian Tube Cancer
Not sure how to post so I apologize if this thread is linked to another but not intended to be a thread. I Just want to let you all know my story if it will help someone. I was diagnosed with fallopian tube cancer stage 1A in July of 2005. A very rare disease and even more rare; an early diagnosis. I had a pretty large ovarian cyst that had torsed on it's blood supply and I couldn't get out of bed. I was whisked to the ER where they did every diagnostic test in the book but didn't know until they did surgery that they'd find a little hidden cancer in my fallopian tube. My CA-125 was never elevated. Anyway, 6 lymph nodes were taken with no evidence of metastasis. Had the works done and more (total hysterectomy and pelvic cleansing by an OB GYN ONCOLOGIST SURGEON). The cancer was an aggressive little bugger so despite the early discovery I had to go through the chemo and lose my hair...no biggie...quite liberating really. I was supposed to go through 6 rounds of chemo but they ended up not giving me the 6th for fear that my bone marrow would shut down. 5 seemed like a good number.
Anyway, I had several of the vague symptoms prior to diagnosis such as bloating, feeling full quickly, HEAVY periods, etc. But the most notable was spotting between periods with some pain. AND I WAS VERY, VERY, VERY TIRED...so exhausted that I cancelled my hour drive to my OB GYN at least 3 times. I figured I'd see him after I returned from vacation. The cyst torsed while I was on vacation....just in time to save my life. If I had waited another few weeks I could easily have been diagnosed as a stage IIB, which would still be an early diagnosis.
I will be seeing my OB/GYN ONC for life and just started on a once every six month visit with him (down from every 3 months). Anytime I think I am having potential symptoms, he is right on it. I feel scared from time to time but mostly I feel fortunate. I worked way too hard trying to be the perfect working mom and I now have to consistently fight for time for me. I must take care of me first or I may not be able to take care of anyone else. The cancer center I go to has cooking classes to encourage healthier choices in diet, I exercise regularly (even play in tournaments) and I ensure I get plenty of sleep. I also seek complementary health services such as acupuncture. Seems to be working. 6 years cancer free. Good luck to you all! I hope this helps someone.0 -
Talk to meZoup said:Fallopian Tube Cancer
It's been three years since the end of chemo for Stage III fallopian tube cancer, 3 1/2 years since diagnosis. Have felt great and CA-125 has stayed low, but now starting to wonder about it returning. Had to get good information on prognosis.
What is your secret? Yours is the best record I have read since my DX. What Chemo did you take? I wanna know what you do, because it seems to be working0 -
THERE IS A CURE,Kindred Spirit said:Fallopian tube cancer
Hi Patricia4dragonflys,
I was diagnosed with fallopian tube cancer about the same time you were-7/06. Did the standaerd surgery/chemo/radiation and my gyn-onc followed up with serial CA-125's which were ALL NORMAL (less than 15) until the cancer had spresd to my lymph nodes in my neck and who knows where else. DON'T TRUST IT!!! Did more chemo and radiation and when that failed she recommended in 5/09 that I quit treatment and enjoy the summer cause it will be my last. I fired her and had a molecular profile done at Caris labs and started treatment based on what they found. I could feel the tumors regressing in two days! Well, I am now about to start my 7th round of chemo, after 83 radiation treatments ans 13 chemo drugs, and was wondering if ANYBODY knows how to treat this thing??? I an determined to beat this in spite of the odds but am getting very frustrated doing my own research and calling the shots. I would much prefer, of course, to find a treatment that is working. Any ideas?? Anybody??
IN EUROPE THEY ARE DOING GENE THERAPY, WITH STEM CELLS. THEY ARE ILLEGAL IN THE U.S. wOMEN ARE NOT YET CLASSIFIED, BUT ARE LIVING CANCER FREE AS LONG AS SEVEN YRS NOW. HELP ME, HELP YOURSELF. WE NEED TO GO TO WASHINGTON TO SAVE OUT LIVES, WE NEED STEM CELL TREATMENT AND THERE IS A WAY AROUND THE LEGAL ISSUE IN THE U.S., THEY COULD PAY FOR US TO GO TO EUROPE, AND BE THE TEST GROUP! SOMETHING.... I AM OPEN, LET'S START A FIRE LADIES, I CAN'T DO THIS ALONE. KRI0 -
Rare cancerdolores1 said:Same as Ovarian
don't you get tired of being treated as if we had something else! There are more of us FT's out there than we know. We do not even have our OWN RIBBON!! Yikes
Do you think we are overreacting or are the Drs. underreacting?? There are not a lot of stats out there, so I guess we are making new ones. We WILL SURVIVE
Dolores
I was diagnosed in February 2011. I went in for a uterine ablasion and fibroidectomy to control the heavy bleeding and cramping I had been experiencing with my periods. The surgeon took a sample of peritonial fluid during the procedure. My CA 125 was at 98. Based on a CT guided needle biopsy of 4 lymph nodes in my retroperitonial cavity, I was diagnosed with metastatic smooth muscle cell cancer of unknown primary. I spent all of March, April and May being poked, prodded, scanned, and biopsied. Finally, a complete hysterectomy was performed on May 25th. The primary site was my right fallopian tube.
My GYN oncologist has been practicing for 32 years....I was his first case of FT cancer. And since the average age at detection is 64, my age of 46 makes me an outlier even within this small group!
I did 6 rounds of chemo (Taxol, Carboplatin, and Avastin). Although, I made it through treatment relatively unscathed, I have suffered from side effects since completing chemo. Nueropathy in hands and feet, extreme fatigue, loss of hearing, just to name a few.
I finshed chemo nearly 6 months ago. My CA-125 is at a 5 and my CT scans show NED. While I still don't feel completely back to normal, I feel that I am getting closer everyday. Massage and exercise have become my best friends!! I was blessed to be able to stay off work throughout the course of treatment. In fact, today is the 1 year anniversary of my last day teaching. I will be returning to work (4th grade)in the fall.
It does help to know that we are not alone. I would love to hear from more long term survivors.....0
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