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ROLL CALL - DECEMBER 2012

Alexandra's picture
Alexandra
Posts: 1263
Joined: Jul 2012

Someone suggested roll call to keep track of all teal sisters on this board. I think it's a great idea.
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 us newbies some hope and motivation.

Thank you ladies,

Alexandra's picture
Alexandra
Posts: 1263
Joined: Jul 2012

Name: Alexandra
Age: 45
Location: Toronto, Canada
Diagnosed: May 3rd, 2012
Stage: 3C
Genetics: BRCA1 positive
Treatment: 1 debulking surgery and 7 rounds of Taxol/Carboplatin, last one on Nov.26th
Recurrences, if any: not yet
Current status: NED for 3 weeks
Current CA125: 7

2timothy1 7's picture
2timothy1 7
Posts: 337
Joined: Jan 2012

Shawnna
Age:45
Dx3c nov18,2011

6 rounds IV/IP cisplat & taxol completed 5-22-2012
NED for 6 months -ca 125(20)

Ca125 49 currently
CT showed slightly swollen lymph nodes

Taking metformin and iscador shots
Prolly more chemo in Jan:(

jbeans888's picture
jbeans888
Posts: 313
Joined: Mar 2011

Name: joyce

Age: 33

Place: GAINESVILLE, Fl

Stage: 3lll

6 rounds of carboplatinum & taxol

I have been NED for a year and a half.

Ca-125 is currently:6

My message to all the newbies is your allowed to have a few pity party days, but stay strong, be active and know that you always have your teal sisters talk to if your feeling all alone.

When I was dx I was 31 ready to get married and have kids. I went in for a minor surgery and that's when they found cancer, alot. They called in a gyn/oncologist and it took 7 hours to debulk me. All of this going on and I had no clue. I woke up that with stage 3lll ovarian cancer, a full hysterectomy, removal of appendex and omentum. Cancer was all over intestines and started going to liver. I woke up as a totally different person. I also had many complications due to stomach obstruction, had Sepsis and needed an ostomy bag for 6 months.

My point, cancer changed me forever, but I am still here after all this. I know it is likely to come back and it's scary, but I get up every day and live my life appreciative I am still here. Even during chemo when I ft like hell I got up and walked everyday. Even if all I could do was get to the end of the drive way. Somedays where better than others.

So even when we feel defeated remember cancer can take a lot, but it can't take your will to fight.
Stay Strong My Teal Sisters

Joyce :-)

kimberly sue 63's picture
kimberly sue 63
Posts: 404
Joined: Apr 2012

Thanks for sharing your story. You are inspiring. You are right cancer does change us. I am at the moment in time to accept that change....It is not always easy. But you are right we have to keep the fight and enjoy the life. Kim

 

 

Tethys41's picture
Tethys41
Posts: 1057
Joined: Sep 2010

Name: Kate
Age: 53
Location: Colorado
Diagnosed: August 7, 2009
Stage: IIIC, High grade
Genetics: BRCA1 positive
Treatment: debulking surgery - suboptimal (tumor left on liver, lymph nodes and cervix left behind due to extent of disease).
8 rounds of Taxol/Carboplatin/Avastin; High dose IV vitamin C
NED March, 2010 - 11 rounds maintenance Avastin
Current status: NED since March, 2010
Current CA125: 1
I have altered my diet and lifestyle, take supplements to address my imbalances and autoimmune conditions, am on maintenance Iscador (mistletoe). No lingering side effects from treatment.

zinaida's picture
zinaida
Posts: 220
Joined: Oct 2007

Name: Zina

Age: 59

Location: Milwaukee, Wisconsin

Diagnosed: February 14,2007
Stage: 2C
Genetics: BRCA1 positive
Treatment: Omentectomy, bilateral salpingo-oophorectomy, total abdominal hysterectomy;
6 rounds IV (port in chest area) of Carboplatin/Taxoter
+ 12 rounds Herceptin for breast cancer stage 1 (same day surgery
by different doctor). Two separate cancers (not a metastasis)
Ned for almost 3 years :)
Recurrences: 1st - January,2010 Carboplatin/Gemzar from January to June (not remember
regimen); NED for 6 month

2nd - January,2011 Avastin/Doxil, after 2-3 injection - Avastin was canceled
due to high BP, continue only Doxil to August; due to shortage of Doxil
start Taxol September,2011 and end January,2012.

February,2012 start Carboplatin again. June - July get break from chemo by
my requast. August to current continue Carboplatin every 3 weeks.

Current status; chemo treatments due to 2nd recurrence.CT scan on December,14 - progress
ion of disease. Carboplatin canceled. Topotecan will start December,21.

Current CA125: 272. (due d-s: 197; after surgery-40; after 1st round of chemo-9.
1st recurrence -800ts; 2nd recurrence - 400ts.)

wholfmeister's picture
wholfmeister
Posts: 265
Joined: Dec 2012

Age: just turned 60
Location: Ohio
Diagnosed: March 2012
Stage 3 c, high grade. Second, unrelated cancer in uterus, stage 1, discovered in pathology from surgery.
Genetics: I haven't had the testing done
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. Enjoying December before starting a year of monthly taxol for maintenance. I also made some big changes to my diet.
So far, so good.
CA 125 was around 300 at diagnosis, shot up to 2000 with first chemo treatments, but now is down to about 10.

kathryn1's picture
kathryn1
Posts: 88
Joined: Jul 2009

Hi,
Name:Kathryn
Age: 52
Location: Tennessee
Diagnosed: May 2009
Stage:2C

I'm doing great, no recurrences. I check here every so often and keep everyone in my prayers.

JoanC's picture
JoanC
Posts: 225
Joined: Jan 2009

Name: Joan
Age: 69
Location: Salem, Oregon
Diagnosed: April 2008
Stage: 3C
Genetics: Not been tested
Treatment:Debulking surgery, IP port with Taxol/Cisplatin/Carboplatin/Gemzar ended10/6/2008
Recurrences: None
Current status: NED 4yrs plus
Current CA125: 7

Great idea, Merry Christmas to all my teal sisters

mopar
Posts: 1954
Joined: Apr 2003

Name: Monika
Age: 58 on 12/26!
Location: Clinton Township, MI
DX: February 28, 2000
Stage: Clear Cell 1C
Genetics: No positives
Treatment: Debulking surgery (complete hysterctomy, 45 lymph nodes removed), 6 rounds of Carbo/Taxol
Recurrance: 2006
Treatment: Debulking surgery, appendectomy, 6 rounds of Carbo/Taxol/Taxotere
Current status: NED as of 2011. Need to get another CT and appointment for yearly follow-up
Current CA125: 15, up from 13 6 months ago. My lowest CA125 was 8

Susan53's picture
Susan53
Posts: 177
Joined: Jun 2011

Name: Susan
age 59
Location: Muskegon, Michigan
Diagnosed: 8-9-10
Debulking surgery 9-8-10
Stage 1 grade 3
Genetics: Don't know
Treatment: Surgery and 6 rounds of Carbo/Taxol Last chemo was mid Feb. 2011
Recurrences: none
Current status NED 20 months
CA125 not a marker for me

pattysoo's picture
pattysoo
Posts: 173
Joined: Oct 2010

Diagnosed: May:2010 Low grade serous PPC, Stage IIIC

Six rounds of carbo/taxol + 5 rounds of Avastin

NED for 18 mo. Now in recurrence but no treatment yet.

CA125 is currently 60+

See the gyn/onc in 2 weeks. Think it's time for a scan. 

Hoping for a clinical trial.

ptharp
Posts: 190
Joined: Oct 2012

I think this is a good idea too.

Name: Pamala
Age:54
Location: Bethel, Maine
Diagnosed: October 2, 2012 found out the mass was cancer (date of hysterectomy).
October 18, 2012 found out I am Stage 3C
Genetics: Have been refered for Genetic Testing BRCA1 and BRCA2 Appointment date March 22, 2013
Treatment: 1 optimal debulking surgery and 6 rounds of Taxol/Carboplatin. I am starting my third cycle this week. (cycle 3 weeks - Week one Carboplatin and Taxol, Week two just Taxol and week three just Taxol
Recurrences, if any: N/A
Current status: See above
Current CA125: 5

Amanda767
Posts: 6
Joined: May 2012

I'm Amanda.
I live in Alabama .
I was diagnosed as Stage 2C
I had a total hysterectomy and debulking surgery in March.
My genetic testing was negative.
I did three 21 day cycles of Taxol/Carbo followed by three 21 day cycles of IP Taxol/Cistoplatin.
I finished chemo in Sept.
PET scan in Oct showed NED.
I will have PET or CAT scans every six months for 5 years.

MJensen
Posts: 93
Joined: Oct 2012

Name: Michele
Age: 59
Location: Santa Barbara, California
Diagnosed: Aug, 2010. Stage 4 OVC -CA125 was over 4000- Biopsy/surgery, chemotherapy,debulking surgery Oct 2010, chemotherapy.
Treatment: 6 rounds Carbo/Taxol - NED DEC 2010. Recurrence Feb 2011- since then I have been on Gemzar/Cisplatin, Avastin /chemo pill, Doxil and currently on Topotecan...may need to go back on Taxol. Recently had a bowel obstruction and 2 back surgeries due to fractures in my vertebrates. Brittle bones from chemo and osteoporosis. May need another back surgery.
Status: Need to determine if Topotecan is working or not. Currently only able to work p/t. 24 - 30 hrs a week.
CA125: 1700

tealnpink
Posts: 7
Joined: Oct 2010

Name: Karen

Age: 58

Location: Mississippi

Diagnoses: 1.February 2010 stage 3C low-grade papillary serous carcinoma and high-grade serous ovarian cancer.

2.May 2010 stage 2B invasive ductal carcinoma breast cancer.

3.September 2012 malignant neoplasm of colon.

Genetics: BRCA2 +, ER+100%, PR+ 25%, HER-2+ 20%, and KRAS mutation.

Treatment: 1.2010: debulking and bladder resection with neobladder placement.

2.2010: 6 round of Taxol/Carboplatin.

3.2010 bilateral mastectomy.

4.2011: breast reconstruction.

5.2012: 6 rounds of Carboplatin/Gemzar.

6.2012: currently in phase 1 clinical trial.

Current status: 3 separate cancers - never NED - chemo resistant – metastatic incurable ovarian, colon, and breast cancer.

childofthestars's picture
childofthestars
Posts: 246
Joined: Jan 2011

Name: Michelle
Age: 48
Location: England
Dx: Ovca 2C July 2010 (Dx Breast ca March 2000)
Surgery: De-bulking etc Aug 2010
treatment: Dense Dose Taxol/Carbo for 18 weeks
Now: Very well - CA125 4
BRCA 1+
Wishing everyone a very Merry Christmas and a very Happy, Healthy 2013
xxxx

mom2greatkids's picture
mom2greatkids
Posts: 516
Joined: Jun 2011

Name: Carla
Location: Mississippi
Diagnosed: May 18, 2011. Complete hysterectomy/debulking. 6 rounds of carbo/taxol. 7 months complete remission. Recurrence May '12. Currently under second round of Doxil.

Age: 50
I am stage 3c clear cell. I changed doctors after my recurrence. I have said I don't ever want us to discuss prognosis. I just want to attempt to live my life.

Best wishes to all of you.

SHANNON1231's picture
SHANNON1231
Posts: 53
Joined: Nov 2012

Name-Shannon
age- 34
Location- Bensalem, PA

Dx-Stage 4 ovc february 29 2012

2/29/12- complete hysterectomy and debulking, right underarm lymphnode removed (+)

8/2012- finished 6 rounds of taxol and carbo, ca125 was at 6 and ct scan was clear

9/2012- started clinical trial which included a low dose of taxol once a month to possible help prevent a re-occurance.

12/2012- 3rd treatment tomorrow for trial, and ca125 is up to 27 :(

poopergirl14052's picture
poopergirl14052
Posts: 1179
Joined: Nov 2010

..with help of a walker..on chemo for another six months..Carbo/Taxatore tumor shrinking but still there ....sons a *****es. Hands are also numb...this chemo is VERY hard to handle and I've been sicker longer. Balance is inner ear problem and I will start physical therapy this week. Spend most of day in bed...lost some weight but I am still here and still fighting. Merry Christmas to all of my teal sista's ....val

2timothy1 7's picture
2timothy1 7
Posts: 337
Joined: Jan 2012

Bless your heart! Glad you are able to walk with help of walker!

poopergirl14052's picture
poopergirl14052
Posts: 1179
Joined: Nov 2010

..with help of a walker..on chemo for another six months..Carbo/Taxatore tumor shrinking but still there ....sons a *****es. Hands are also numb...this chemo is VERY hard to handle and I've been sicker longer. Balance is inner ear problem and I will start physical therapy this week. Spend most of day in bed...lost some weight but I am still here and still fighting. Merry Christmas to all of my teal sista's ....val

lovesanimals's picture
lovesanimals
Posts: 1279
Joined: Sep 2011

I'm praying for you as you fight this beast!

Love and hugs,
Kelly

kikz's picture
kikz
Posts: 1281
Joined: Jun 2010

Name: Karen

Age: 64

Location: Gilroy, CA

Diagnosed: 03/16/2010

Stage: IIIC

Genetics: Has never been discussed with me, guess I should ask.

Treatment: Three rounds Carbo/Taxol prior to surgery, hysterectomy/ oophorectomy/debulking surgery, then three more rounds chemo; three infusions per round. IP Taxol (day 1), IP Cisplatin (day 2) and IV Taxol (day 8). CA 125 9000+ at diagnosis, 1600 after chemo, prior to surgery, 13 post surgery and 7 after final chemo.

Recurrences: CA 125 begin to rise in April (23), doubled by June, had petscan in July verifying walnut-sized tumor to the left of my liver.

Current status: I am taking 20 mg Tamoxifen daily. My oncologist and surgeon do not believe in using chemo if a patient is not symptomatic. I have no symptoms and in fact am in terrific health. No other health problems. I tell my doctors, “I am in perfect health, except…..”

Current CA 125: Prior to beginning Tamoxifen it had reached 114. Next three were 67, 29, 24 which we were all thrilled with. The last one was 31 which I was upset about. I had a blood draw last Tuesday and will get the results in the mail by Friday or Saturday. As I have said many times, I prefer to wait for the letter; calling the office freaks me out.

Alnik
Posts: 56
Joined: Feb 2012

Age : 44 Stage 3c from Illinois. Diagnosed Dec 2011. Treatment Carbo/Taxol CA125 8. Things seem to be okay for now just trying to repair myself from the damage chemo has done to me. Loooking forward to a New Year!!!

lovesanimals's picture
lovesanimals
Posts: 1279
Joined: Sep 2011

Name: Kelly
Age: 52
Location: Elk Grove, California
Diagnosed: September 2010
Stage 2b

Surgery: October 11, 2010 - removed baseball-size tumor, total hysterectomy, omentum removal, and had one foot of lower bowel removed because tumor had attached itself there.

Treatment: six sessions of carbo/taxol every three weeks between December 3, 2010 and March 24, 2011.

CA 125 at diagnosis: 2,800+
CA 125 after surgery but before chemo: 7
CA 125 now: 7

I've been NED (no evidence of disease) for two years and two months.
No recurrences so far.

Praying for all of us and wishing everyone a happy, blessed, and healthy new year!

Kelly

kikz's picture
kikz
Posts: 1281
Joined: Jun 2010

You live about a couple of hours away from me. Ever come to the Gilroy Outlets or Garlic Festival?

Karen

lovesanimals's picture
lovesanimals
Posts: 1279
Joined: Sep 2011

I've actually never been to the Gilroy Outlets or Garlic Festival but have traveled through/near your town on the way to Monterey to visit relatives. You and I are not that far from each other.

Kelly

debbie steadham
Posts: 30
Joined: Aug 2012

found out December 2010 had surgery January 2011 8 chemo treatments carbo/taxol.was ned for 14 months recurance now back on chemo cisp/taxol/avastin i am in doing my 2nd treatment this week first treatment made me very sick hoping this one will be easier.I thank God he has been with me through this alful time in my life ,I think we all are still here for a reason.I hope all of you teal sisters have a very merry Christmas and Happy New year and many many more..hugs ..Debbie from Orange Texas

debrajo's picture
debrajo
Posts: 792
Joined: Sep 2011

@Debbie Steadham I'm from Vidor Tx. not overian, but UPSC uterine

azgrandma's picture
azgrandma
Posts: 578
Joined: Feb 2010

Name: Lynda
Age: 62
Location: Arizona
Diagnosed: 11-2009
Stage: 3C
Treatment: Debulking surgery, I still have my uterus and cervix due to my organs sticking together, it was to dangerous to remove. I had a ureteral stint for 10 months.

I recieved 4 rounds of carbo taxol, my white count fell too low to recieve my last 2 treatments. I was given numerous rounds of neupagan but my white count did not go up enough to recieve any more chemo. Since my ca 125 was so low, i was given and pet scan in May 2010 and was pronounced NED and I am still NED today.

I had a scare in June of 2012 my white count has continued to stay low and was sent out to see if it was possible that I had lukemia. While they were tested me for that they ran a test called a gene replacement rearangement. This is used to see if you have lymphoma, I came back positive for that test. I was given a Ct scan and it showed no sign of cancer. I got everyone I knew to pray for me and when the test was repeated three months later it showed no sign of lymphoma. I give God all the glory.

Recurrences, if any: None
Current status: NED for almost 3 years
Current CA125: 9

debbie steadham
Posts: 30
Joined: Aug 2012

Yes i sure know where vidor is go through there every now and again,went to church at one of the pentacostal churches there meet some nice people.Funny my name is Debbie Jo ,do you have a facebook if so we can be friends on there.So good to see someone close just bad reasons.Hugs Debbie p.s. if you ever need to talk just let me know.

vanessamood's picture
vanessamood
Posts: 52
Joined: Apr 2012

Name: Vanessa Graves

Age: 73

location: Rockport, Maine

Diagnosed: January 31, 2012

Stage: 1A

Six rounds of Chemo

As of now I am NED. I thank God for this discussion board. It has answered so many of my questions that would not have been answered otherwise. Merry Christmas to all.

debrajo's picture
debrajo
Posts: 792
Joined: Sep 2011

My FB is Debra Powell Phillips,come on by and leave me a request! You do the same, call anytime, I'm a night owl! 409-786-2819 Best, Debra Jo

ktamp
Posts: 82
Joined: Dec 2011

Name : Kim

Age : 34

Diagnosed with stage 2 colon cancer March 2010. No chemo. Found out I have lynch syndrome in July 2010. Diagnosed with stage 1C clear cell ovarian cancer. Two rounds of dense dose carbo/taxol then switched to carbo/taxotere for 4 rounds. Currently NED.

lulu1010's picture
lulu1010
Posts: 367
Joined: Feb 2011

Name: Linda Age:59 DX PPC in Aug 2010 Stage: 3C Was ill over a year before diagnosis. Had 4 rounds of Carbo before robotic surgery to remove ovaries and check lymphnodes. Lymphnodes were negative Had 6 rounds of Carbo/Taxol and was NED. Was in vaccine trial and recieved 7 of the 10 doses before the cancer reocurred. Started on Doxil and cancer was growing after 5 treatments and I was started back on Carbo. Since I am allergic to it, I recieve it in the hospital every 3 weeks with steroids and Benadryl over 24 hours. I have had 5 treatments and my symptoms are gone and my Ca 125 is 12.  I also was found to be BRCA 2 positive so while I was in remission I had a prophylactic bilateral mastectomy.

taiga's picture
taiga
Posts: 75
Joined: Jul 2010

I'm here and looking forward to a healthy 2013. Dx. with stage3, grade 3 clear cell July 2010. Participated in GOG-252 and finished that December 2011 and was also diagnosed with breast cancer in December last year. I'm done another round of chemo, ending in April, had a double mastectomy and got my implants in September. Will continue on Herceptin until March and Arimidex for 5 years. My scans for the ovarian cancer have been clear, the CA-125 is creeping up a bit. Best news of all - our daughter is pregnant with the first grandchild on both sides! Due in April - finally, some GOOD news.

kikz's picture
kikz
Posts: 1281
Joined: Jun 2010

that is such good news. Glad to hear you are doing well.

Karen

chris8588
Posts: 57
Joined: Oct 2012

alexandra, that is a real good idea. Anyway i had my port placed today and was really nervous about it but so far its not too bad. And I was wondering what kind of snacks people were taking to their chemo treatments. I dont have mine scheduled yet but i wanted to get my cancer bag together and just wanted to get some ideas. Thanks

Alexandra's picture
Alexandra
Posts: 1263
Joined: Jul 2012

bumping it up to the top of the list

ptharp
Posts: 190
Joined: Oct 2012

Chris: You can bring just about anything you want. Where I go there is a microwave so you can bring something to warm up. The place I go has cold soda and water and coffee. I usually eat lunch there on my long day. There is a little shop down the hall. On my short days I just dring water or soda. Hope this helps. There is nothing to be nervous about. Make sure your doc gives you numbing cream for your port. I do not feel a thing. I put it on an hour before my appointment. Pease a cake, but  you do get sleepy. It's a good idea to have someo ne drive you. Also, usually the IV room has WIFI so you can bring a kindle or computer what every you have.  Good luck. You will be fine.

ptharp
Posts: 190
Joined: Oct 2012

Chris: You can bring just about anything you want. Where I go there is a microwave so you can bring something to warm up. The place I go has cold soda and water and coffee. I usually eat lunch there on my long day. There is a little shop down the hall. On my short days I just dring water or soda. Hope this helps. There is nothing to be nervous about. Make sure your doc gives you numbing cream for your port. I do not feel a thing. I put it on an hour before my appointment. Pease a cake, but  you do get sleepy. It's a good idea to have someo ne drive you. Also, usually the IV room has WIFI so you can bring a kindle or computer what every you have.  Good luck. You will be fine.

kimberly sue 63's picture
kimberly sue 63
Posts: 404
Joined: Apr 2012

Kim

Diagnosed: 3/28/12 which was my surgery date

Surgery:  hysterectomy, bilateral salpingo-oophorectomy, omentumectomy. Optimal debulking surgery. No lymph node involvement and no other organ resections.

Stage: 3C serous epithelial ovarian cancer, high grade

Chemo: Started in the last week of April 2012. carbo/taxol dense treatment. I had weekly treatments as long as my blood counts were ok. It took untill the end of October before I finished chemo. CA125 6. No symptoms since finished chemo. Next check in February. Officially in remission.

After effects:  I did great through chemo and it wasn't until Aug did I start to feel some neuropathy in my hands and feet. I'm now dealing with these symptoms. Also joint pains.

I'm thankful I made it through. But struggle with the changes that cancer has brought to my life. I haven't accepted them, but I am working on it.

It was great to read the roll call seeing all who continue to endure, no matter what the cancer has brought to all of you.

christmas and the happiest of holidays to you all.

Kim

leesag's picture
leesag
Posts: 625
Joined: Jan 2010

HI,

I'm Leesa and I was diagnosed Stage 3c in Jan. 2010.  Finished Chemo declared NED in July 2010.  Brain Mets May 2011 upgraded to stage 4, Declared Ned August 2011 (after brain surgery, radiation, and gamma knife surgery).  Still NED ;)

 

Hugs to all!

 

Leesa

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