ROLL CALL - JUNE 2013

Alexandra 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: 4

Name: Hearty Pioneer
Age: 50
Location: Pacific Northwest WA state
Diagnosed: March 7, 2012, 8:30 PM at hospital ER
Stage: 2C invasive, high grade serous carcinoma, tumor size 20 x20 cm right ovary, right fallopian tube, left fallopian tube and ovary, right pelvic peritoneum
Genetics: BRCA1+ scheduled for double mastectomy with reconstruction June 25, 2013 (had cancer in right breast 2001)
Treatment: 1.5 liters of fluid removed from right lung March 2012, optimal debulking surgery March 2012; Cisplatin (IV chemo) and Paclitaxel (IP chemo) 18 weeks, last treatment July 2012. Took homeopatic remedies for chemo detox. September 2012 ended up at hospital for 4 days with peritonitis then 21 days IV antibiotic every 6 hours
Recurrences, if any: not yet
Current status: NED since August 2012
Current CA125: my oncologist does not report my CA 125 score to me unless there is an issue. She thinks this leads to a better quality of life, not worrying about small fluctuations.

Name:  Julie

Age:  64

Lives: Gold Coast, Australia

Diagnosed: December 2011 with Stage 4 Primary Peritoneal Cancer

Initial sympton: Collapsed lung

Treatment:  Pleurodesis on my right lung to prevent further fluid build up (successful), 4 rounds of carbo/taxol, optimal debulking surgery, 3 rounds of carbo/taxol, two months off chemo assuming remission with CA125 down to 16 from 653.  Then rose to 209 and 3 rounds of Doxil (Caelyx) continued rising numbers and bad side effects, 5 rounds of Gemzar boosted with Cycloblastin and numbers still increased so now on Topotecan and have so far had 3 rounds.  Side effects minimal and numbers still rising but last week just a small rise so hoping next month will show a fall!  Ever the optimist!  

JulieL said:

Roll Call 2013

Name:  Julie

Age:  64

Lives: Gold Coast, Australia

Diagnosed: December 2011 with Stage 4 Primary Peritoneal Cancer

Initial sympton: Collapsed lung

Treatment:  Pleurodesis on my right lung to prevent further fluid build up (successful), 4 rounds of carbo/taxol, optimal debulking surgery, 3 rounds of carbo/taxol, two months off chemo assuming remission with CA125 down to 16 from 653.  Then rose to 209 and 3 rounds of Doxil (Caelyx) continued rising numbers and bad side effects, 5 rounds of Gemzar boosted with Cycloblastin and numbers still increased so now on Topotecan and have so far had 3 rounds.  Side effects minimal and numbers still rising but last week just a small rise so hoping next month will show a fall!  Ever the optimist!  

Lynda

62

Arizona

Diagnosed Nov 2009 stage 3c

Surgery in Nov and chemo started in December.Had debulking surgery and stints put in ureder.When i was first diagnosed my ca 125 was over 4500, it is now at 9

I had to have mu lung and stomach drained twice but once the chemo took effect it took care of the fluid

I recieved carbo taxol and was only  able to recieve 4 rounds of chemo due to low white count. Was given pt scan in may of 2010 and it has been clear ever since. Praise GOd for healing.

Just had checkup last week and i am still doing well and still cancer free Praise God

Name:  Robyn

 Age:  47 

Location:  Texas

Diagnosed: July 10, 2007

Stage: 3C


Genetics: none (oddly my sister had breast cancer – 10 year survivor – and we are both negative for the gene)

Treatment: debulking surgery ; 10 rounds of IV Carbo/Taxol.  Had to discontinue IP after first round due to complications from scar tissue. 

First Reoccurrence: September  2011, 6 rounds of Carbo/Taxol

Second Reoccurrence:  January 2013, currently on monthly Doxil and doing well

CA125:  Highest prior to surgery was over 800.  Lowest after surgery and treatment was 12.  I hit 190 early this year but after 5 rounds of Doxil I am back down to 102. 

I know I have had a whole lot easier road than some and tougher road than others. But for all of you who are earlier in this journey than I am, just believe there is a whole lot of life left to live - and not just after cancer but with it as well!  I am living proof!  

I live in Dallas TX,

Age 58

UPSC Diagnosed incorrectly 9/2010 and diagnosed correctly at recurrence 12/2012

Still taking chemo, just finished the 9th round of taxol and number 7.5 carbo. 

CA125 down from 2276 to 21 as of last week. 

CT scans to be done 7/11 to see if continued reduction of tumors.  At this time tumors have gone from plural cavity, liver, abdomen and left with one in pelvic floor and one in omentum. 1cm and 3 cm respectively that can be seen. 

Changed diet lost 45 pounds and still working on losing.  Looking for additional ways to manage this through diet and supplements if anyone has infor to share.

Yep I was lurking

Diag stage IV primary peritoneal  May 2012 

Had hysterectomy and debulking as well as sx on lungs  (talc)

6 rounds carbo/taxol last was 11/19/2012  ca125 was 0 at one point, stayed  below 10  for awhile, then 13,23, 60 and now 116.  I show on ct  a small spot about 2cm and 2 small areas they are watching.  Feel good other than issues with severe osteoporosis.  Am gardening  and doing  aqua fitness.

Set to start doxil this Wednesday, anyone have experiences with this.

I keep positive but get nervous at times.

I haven't been on the board for a while.

Dx: March 28th 2012 with epithelial ovarian cancer 3c, both ovaries, right fallopian tube, and omentum involvement

SX: optimal

Chemo: chemo dense, weekly chemo for 18 weeks...it took 8 months to get through chemo due to the need to skip treatments when blood counts were low.

Remission: 9 months now!!!!

CA125: 5

BRCA1 positive; deceided not to have prophyalactic mastectomy...I am surveyed by mammogram every 6 months, and Breast MRI on the alternating 6 months.

I've been absent from the board for a long time.  Please accept my apologies!

48 years old

Diagnosed Stage 3c January 2010

Debulking/Chemo

Ned July 2010

Diagnosed Brain Mets May 2011 upped to Stage 4

Craniotomy/ Whole Brain Radiation/ Gamma Knife

Ned August 2010

Living Strong today/ still NED 

On a personal note,  I lost my Grandfather in 2011 and my father in 2012.  In May 2013, my husband informed me that after 15 years of marriage (and me supporting him through his  drug addiction for four years and subsequent his terminatin and unemployment for a year) that   "due to my lack of availability for HIS anxiety" he wants a divorce.  

I'm just hanging on, trusting that God has a plan for me.  

After all, I'm a SURVIVOR!

leesag said:

Roll Call: Surviving!

I've been absent from the board for a long time.  Please accept my apologies!

48 years old

Diagnosed Stage 3c January 2010

Debulking/Chemo

Ned July 2010

Diagnosed Brain Mets May 2011 upped to Stage 4

Craniotomy/ Whole Brain Radiation/ Gamma Knife

Ned August 2010

Living Strong today/ still NED 

On a personal note,  I lost my Grandfather in 2011 and my father in 2012.  In May 2013, my husband informed me that after 15 years of marriage (and me supporting him through his  drug addiction for four years and subsequent his terminatin and unemployment for a year) that   "due to my lack of availability for HIS anxiety" he wants a divorce.  

I'm just hanging on, trusting that God has a plan for me.  

 

After all, I'm a SURVIVOR!

I'm so sorry for all your personal losses! Broke my heart to read your post. Bible says in the world you will have trouble, but take heart, for i have overcome the world.  It is so true, we all will have trouble! You've sure had your share.  I know God has a plan for us all no matter how confusing the road is! Hang in there sister:).