ROLL CALL - JUNE 2013

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

 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! 

Name: Kate

Age: 54

Location: Colorado
Diagnosed: August 7, 2009
Stage: 3C

Surgery: 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: 2

Still following an anti-cancer diet, exercise, stress management and following the direction of my naturopath, who recommends the supplements I need to prevent cancer.

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. 

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.

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

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!

TamraAvery said:

June 2013

Roll Call

Name: Tamra

Age: 45

Location: Washington
Diagnosed: 24 May 2010
Stage: 4

Surgery: 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: 6

Name ; 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

kikz 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.