ROLL CALL - JUNE 2013
It's been 6 months since the last Roll Call. Time sure flies.
Please post a short status report of where you are in your journey.
Dear long-term survivors! If you are just lurking please post too to give newbies some hope and inspiration.
Thank you ladies,
Comments
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I am still here
Still a survivor...having scans in a few weeks and hoping for nice long break.Dx 2009 ...surgery..chemos..now the wait. Today is National Survivors day!! Stay strong.....Val
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Here!
Name: Alexandra
Age: 45
Location: Toronto, Canada
Diagnosed: May 3rd, 2012
Stage: 3C
Genetics: BRCA1+
Treatment: debulking surgery Sep. 2012; 7 rounds of IV Taxol/Carboplatin, last one Nov. 2012; abdominoplasty Jan. 2013
Recurrences, if any: not yet
Current status: NED for 6 months
Current CA125: 40 -
Roll call
stage 3c, BRCA negative
debulking: dec 2011
6 roundss IP/IV chemo(ending May22, 2012)
Ned 6 months
As ca 125 began rising & abdomen lymph nodes grew bigger, made decision to try a clinical trial if I qualified.
April 17, 2013 stared PARP drug, olaparib( pill form- 16 per day) . No nausea.
May 13, 2013 ca 125 Went from 247 to 155!
Fly to NIH 1 day per month, which they pay for, & have assessments done & get pills.
So far this has been a breeze compared to regular IV chemo. Don't know how long this will work but thanking The Lord for the extension!
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Thanks for calling roll, Alexandra!2timothy1 7 said:Roll call
stage 3c, BRCA negative
debulking: dec 2011
6 roundss IP/IV chemo(ending May22, 2012)
Ned 6 months
As ca 125 began rising & abdomen lymph nodes grew bigger, made decision to try a clinical trial if I qualified.
April 17, 2013 stared PARP drug, olaparib( pill form- 16 per day) . No nausea.
May 13, 2013 ca 125 Went from 247 to 155!
Fly to NIH 1 day per month, which they pay for, & have assessments done & get pills.
So far this has been a breeze compared to regular IV chemo. Don't know how long this will work but thanking The Lord for the extension!
Name: Kelly
Age: 52
Stage: 2b, grade 3
Diagnosed: September 2010
Treatment: Debulking surgery on October 11, 2010; six treatments of carbo/taxol between December 3, 2010 and March 24, 2011
Recurrences: none so far
Current status: NED (no evidence of disease) since March 24, 2011 = two years and two months so far!
CA 125: Was over 2,800 prior to surgery; dropped to 7 after surgery and before any chemo; currently at 6
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Roll call
Oops
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Roll Call 2013
You are a huge asset to the discussion boards, Alexandra! Great idea.
Name: Rose.
Age: A fit and healthy 72 (so I thought!)
Location: Newcastle, Australia.
Diagnosed: 28th November,2012.
Treatment: 3 rounds chemo (Taxol & Carboplatin), debulking surgery, 3 more rounds of chemo.
Current Status: Remission.
Current Ca125: 5 - down from 1645.
I am feeling quite jublilent at present because since November 2012 June is the 1st month with no medical appointments of any kind!
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Roll Call - June 2013
I'm still here, I tend to lurk these days!
I am doing well - DX June 2010 2C, full de-bulking, 18 rounds dense dose Taxol/Carbo - NED since last treatment on 8 Dec 2010. last CA125 done in Nov last year was 4
))As I am BRCA1 I am now serioulsy considering prophylactic mastectomy (dx breast ca in 2000 - lumpectomy followed by 6 rounds chemo & radiotherapy - NED since) just need to find the right surgeon (have been considering this for quite some time prior to Angelina Jolie hitting the news!!!!)
Bright Blessings to all
Michelle xxxx
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Roll Call
Name: Kate
Age: 54
Location: Colorado
Diagnosed: August 7, 2009
Stage: 3CSurgery: Suboptimal
Recurrant ascites following surgery, with a total of 80 liters removed over the course of 2 months.
3 months on 24 hour IV nutrition started in October of 2009.
Treatment: debulking surgery August, 2009; 8 rounds of IV Taxol/Carboplatin/Avastin, last one Feb. 2010; Follow up with 11 rounds of Avastin. Integrative therapies including high does IV vitamin C.Genetics: BRCA1+
Recurrences, if any: None, in remission since February, 2010
Current status: NED for 3 years and 4 months, all tests are clear for any type of cancer.
Current CA125: 2Still following an anti-cancer diet, exercise, stress management and following the direction of my naturopath, who recommends the supplements I need to prevent cancer.
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Roll CallAlexandra said:Here!
Name: Alexandra
Age: 45
Location: Toronto, Canada
Diagnosed: May 3rd, 2012
Stage: 3C
Genetics: BRCA1+
Treatment: debulking surgery Sep. 2012; 7 rounds of IV Taxol/Carboplatin, last one Nov. 2012; abdominoplasty Jan. 2013
Recurrences, if any: not yet
Current status: NED for 6 months
Current CA125: 4Age: 60 (60?!? Really?!? How did I get here so fast??)
Location: Ohio
Diagnosed: March 2012
Stage 3 c, high grade. Second, unrelated cancer in uterus, stage 1, discovered in pathology from surgery.
Genetics: I still haven't had the testing done, although Angelina has me considering.
Treatment: 3 rounds of taxol/cisplatin to reduce tumors away from bowel before surgery in June, followed by 5 months of IV/IP taxol and carboplatin. Currently half way through a planned year of monthly taxol for maintenance. I also made some big changes to my diet and added some supplements. Still crave Diet Coke.
CA 125 was around 300 at diagnosis, shot up to 2000 with first chemo treatments, but was down to less than 5 early this year. There has been a pesky little rise the last 3 months to 15. Waiting...waiting...waiting...
Current status: No hair, beautiful wig. Tingling neuropathy in the middle 3 toes on each foot. In need of a vacation. I'm positive walking on the beach will help the neuropathy.
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I am here
Age :62
Location: St Louis, MO
Dx: 3C on Aug 26 2011
Genetics: BRCA2
Treatment: 4 Carbo/Taxol followed by TAH. then 4 more rounds of carbo/taxol
CA125: 2200 at highest point, went to 4 after surgery. Has been 4, 6.9 and then 5.2 at last checkup.
Status: Have had no recurrence to date of OVCA, but was diagnosed with breast cancer, IDC Triple Positive, in October 2012; had BMX in Jan 2013 and am on Herceptin, an every 3 week infusion for the next year, and Arimidex, a pill every day for the next 5 years. Both very manageable. My hair has grown in and I feel very well except for neuropathy inboth hands and feet and a getting-bigger-every-day-hernia from the surgery.
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Neuropathywholfmeister said:Roll Call
Age: 60 (60?!? Really?!? How did I get here so fast??)
Location: Ohio
Diagnosed: March 2012
Stage 3 c, high grade. Second, unrelated cancer in uterus, stage 1, discovered in pathology from surgery.
Genetics: I still haven't had the testing done, although Angelina has me considering.
Treatment: 3 rounds of taxol/cisplatin to reduce tumors away from bowel before surgery in June, followed by 5 months of IV/IP taxol and carboplatin. Currently half way through a planned year of monthly taxol for maintenance. I also made some big changes to my diet and added some supplements. Still crave Diet Coke.
CA 125 was around 300 at diagnosis, shot up to 2000 with first chemo treatments, but was down to less than 5 early this year. There has been a pesky little rise the last 3 months to 15. Waiting...waiting...waiting...
Current status: No hair, beautiful wig. Tingling neuropathy in the middle 3 toes on each foot. In need of a vacation. I'm positive walking on the beach will help the neuropathy.
I'm certain walking on the beach will help neuropathy:). It will prolly help a lot of things.
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Name- Shannon
Age-Name- Shannon
Age- 35
Diagnosed- stage 4 on feb 29th 2012
surgery- complete hysterectomy and debulking and right underarm lymphnode positive
Brca 1 positive
Treatment- 6 rounds of Taxol and carbo ended in august 2012
re-occurance- December 2012 (now considered platinum resistant)
Currently on a clinical trial which includes Doxil and a text drug called ec145 (mixes folic acid with a chemo drug)
current ca125- 167
My ca125 has not decreased yet but the size of my tumor has slightly so far after 3 months on the trial. Doing ok but have some bad neuropathy and have been very tired.
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June 2013
Name: Tamra
Age: 45
Location: Washington
Diagnosed: 24 May 2010
Stage: 4Surgery: Suboptimal
Treatment: Debulking surgery May 2010; 6 rounds of Taxol/Carboplatin, last one Oct. 2010; Clinical trial of BIBF1120 from June 2010 - October 2012
Genetics: unknown (not enough family history for them to test)
Recurrences, if any: None, in remission since October 2010
Current status: NED, next 3-month check is in early July
Current CA125: 60 -
Count me too!!
Name: Maria
Dxed: 3C, May 2006... 7 year survivor and counting
Surgery included debulking, appendix removal and 9" of my colon
Orginal 6 doses of carbo/taxol put me in remission for about 3 years
My OVCA now being treated as cronic. I have been having chemo each month for almost 3 1/2 years. Luckily, I've had great results with cisplatin/gemzar. My CA-125 has been staying in the 40's. I won't tell you that long term chemo is easy. I'm down for the count for about 2 weeks out of the month.... BUT for me it's oh so worth it. I make the upmost of my "good days". If we met out shopping or at a restaurant ( wouldn't that be great!), I doubt you'd guess that half my time is spent chemoing. I've chatted with two other ladies lately, while we're hooked up to our IV's at my Drs. office, who both have been on this long term chemo like me and they also plan their chemo around vacations and family get togethers.... one had just returned from Venice.
((((((((((HUGS))))))))) to you all, Maria
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Roll call
Dx. with ovarian, uterine and appendix cancers on 8-9-10. I had the moas debulking surgery on 9-8-10.
I had 6 treatments of taxol and carboplatin for the ovarian cancer.
I had Brachy Therapy internal radiation 3 treatments for the uterine cancer.
My appendix cancer was discovered when I had the moas and they removed my appendix.
It had 2 stones in it and they were tested and they were 2 different types of cancer one adenocarcinoma and the other goblet cell.
I have been NED since Feb. 2011.
I have had 2 hernia surgeries one April 26th 2011 and the other Feb. 28th 2013.
I am feeling great and hope to keep feeling this way.
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Roll Call
Count me in!
Age 60
Dx Aug 2010 with 3c high grade.
Treated with 4 carbo and then robotic surgery. Next came 6 rounds of carbo and taxol. Achieved NED so I participated in CVAC vaccine trial. Remission lasted 9 months during which I participated in CVAC vaccine trial. When cancer returned I tried Doxil for 5 months and when it failed I went for another 6 treatments of Carbo. I am allergic to Carbo so I did it in the hospital slowly.
BRCA 2 positive
CA 125 at 16
Now in remission for the last 5 months and feel great!
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Roll Call - PRESENT!
Name - Jo
Age - 70 (on 6/15, so I'm still in my sixties for a few more days!)
Location - Boca Raton, FL
Diagnosed - Feb. 1, 2011
Stage - lllC
Genetics - BRCA 2 pos.
Treatment - 2011: hysterectomy/debulking, 6 rounds carbo/taxol, 7 months NED.
2012: recurrence in Jan., 6 rounds carbo/gemzar, continuing carbo/gemzar as maintenance.
Current Status - no visible signs of disease since June, 2012, but I will do carbo/gemzar every 8 weeks through Aug., then reassessment.
CA 125 - single digits.
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Roll CallTamraAvery said:June 2013
Name: Tamra
Age: 45
Location: Washington
Diagnosed: 24 May 2010
Stage: 4Surgery: Suboptimal
Treatment: Debulking surgery May 2010; 6 rounds of Taxol/Carboplatin, last one Oct. 2010; Clinical trial of BIBF1120 from June 2010 - October 2012
Genetics: unknown (not enough family history for them to test)
Recurrences, if any: None, in remission since October 2010
Current status: NED, next 3-month check is in early July
Current CA125: 6Name ; Donna
Age : 49 22 /8 / 63
Location : Australia South
Diagnoised : April 1st 2011
Stage 4 cervical Stage 3 ovarian
Surgery : part hyst had ovaries and tubes removed
Treatments : 5 weeks radiation and Chemo Cysplatian 2011
internal brachy theraphy 7 days
6 rounds carbo/ taxol 2012
started carboplatin / Liposomal Doxorubicin for metastasis 6.5 cm tumour wrapped around Uretha 2013
Just started first rounds of chemo again had had 6 months of being contained and under control . Had some back pain
was given a ct scann and tumour discovered was also a kidney stone 3 cm which has been removed still waiting to have a stint put in to releive pressue on kidney.
CA - 125 had gone to 188
last blood just before chemo started it had dropped to ca - 125 / 165
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Karen still here.
Name: Karen
Age: 65
Location: Gilroy, California
Diagnosed: March 16, 2010
Stage: 3C
Genetics: ?
Treatment: Three rounds carbo/taxol to reduce tumors in order to have surgery; debulking surgery June 21, 2010; Three cycles, 3 infusion per cycle. IP taxol day one, IP Cisplatin day 2 and IV taxol day 8. Hopitalized twice and final infusion cancelled. Last chemo 9/16/2010. Declared NED November 2010.
Recurrences: CA 125 began rising April 2012, Petscan verified tumor in June 2012; tried 3 different estrogen blockers, Tamoxifen worked first 3 months then CA 125 began to rise, two more drugs did nothing. Petscan in February showed second tumor. Onc determined chemo now necessary because of this tumor's location.
Current status: Chemo began 5/07/2013, second on 5/28/2013. After first chemo CA 125 dropped from 191 to 25. Developed atrial fibrillation after first chemo. Had untrasound yesterday. Hope this can be resolved; makes the cancer battle a little tougher because I am so tired all the time. Felt better for a while but palpatations came back over the weekend.
Current CA 125: 25
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6 years survivorkikz said:Karen still here.
Name: Karen
Age: 65
Location: Gilroy, California
Diagnosed: March 16, 2010
Stage: 3C
Genetics: ?
Treatment: Three rounds carbo/taxol to reduce tumors in order to have surgery; debulking surgery June 21, 2010; Three cycles, 3 infusion per cycle. IP taxol day one, IP Cisplatin day 2 and IV taxol day 8. Hopitalized twice and final infusion cancelled. Last chemo 9/16/2010. Declared NED November 2010.
Recurrences: CA 125 began rising April 2012, Petscan verified tumor in June 2012; tried 3 different estrogen blockers, Tamoxifen worked first 3 months then CA 125 began to rise, two more drugs did nothing. Petscan in February showed second tumor. Onc determined chemo now necessary because of this tumor's location.
Current status: Chemo began 5/07/2013, second on 5/28/2013. After first chemo CA 125 dropped from 191 to 25. Developed atrial fibrillation after first chemo. Had untrasound yesterday. Hope this can be resolved; makes the cancer battle a little tougher because I am so tired all the time. Felt better for a while but palpatations came back over the weekend.
Current CA 125: 25
Name: Zina
Age: 59
Location: Milwaukee,WI
Diagnosed: 02-14-2007
Stage: 2C
Genetics: BRCA1 - positive
Treatments: surgery, chemo - carboplatin ( 3 times), taxoter, gemzar, avastin, doxil, paclitaxel, topotecan.
Recurrences: December 2009; January 2011.
Current status: chemotherapy every 3 weeks, carboplatin.
Current CA125: 378.
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