It's been a long time since we've had a check-in

scatsm
scatsm Member Posts: 296 Member
in Ovarian Cancer #1

This board has been somewhat sluggish since our dear Alexandra left us...I, like some others, have been wondering about some of the regulars, and the newer folks too, so I thought I'd try a check-in.

I'm an almost 5 year survivor of ovarian 3C. I'm BRCA 2 positive.. I've had 3 recurrences and currently am on a Parp inhibitor which is an oral med with relatively few side effects. The first 2 months were great, CA125 dropped from 186 to 40..next 2 months it went up 5 , then 12 points. My gyn/onc says I can stay on it til it gets to 100 which could be next month or many months after that...every day is a blessing and an opportunity to practice living one day at a time. Since I've had this cancer I've had to retire so now a lot of my time is spent doing volunteer work for Survivors Teaching Students and SLOCA which is the local branch of OCNA Ovarian Cancer National Association. I also go to 2 monthly support groups and have met so many wonderful women who share my journey. The only down side is that some of them do pass away. Went to a funeral Sunday...heartbreaking.

This board was so helpful to me when I started this journey/ordeal. Some of these teal sisters have left us, but I know there are many out there who stop by but don't comment. Would love to hear from you all!

Susan

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Comments

  • Carrot358
    Carrot358 Member Posts: 34
    #2
    It's been a long time

    So good to hear a longer term check in with good results.  Keep me coming!  Carrot/marilyn

  • childofthestars
    childofthestars Member Posts: 251 Member
    #3
    helloooooo

    I'm still here - thankfully NED since dx with stage 11c in July 2010 ...... I confess to being one of those who look in but rarely comment....... I was very upset by the loss of Alexandra who was also a friend of mine "off site" for a short period of time..... But as you point out Susan although some of our teal sisters have left us this site is a wonderful place to visit either to participate or 'lurk' ...... 

    Michelle 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,360 Member
    #4
    Hello ladies.  I am not an OC

    Hello ladies.  I am not an OC warrior, but a uterine/endometrial (UPSC) warrior, and consider you all sisters.  Good to see some of you popping up.  Take care of yourself and please know I cherish you ladies. 

  • kikz
    kikz Member Posts: 1,345 Member
    edited May 2016 #5
    I'm still here

    I am a six-year survivor of Stage IIIc ovarian cancer.  I am on my

    second recurrence.  I have gone through treatment three times for this second recurrence.  We get my number down but I don't get to remission.  My onc gives me a break when my body needs it.  I last had chemo December 2nd.  I feel great but have poor stamina and tire easily.  I have been a member of this board since June 2010.  I have met many wonderful ladies here.  I have also wept over the loss of many.  I am happy to be alive and will fight as long as I can.  

    Karen

  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    edited May 2016 #6
    I'm Still Here Too!

    I was diagnosed with stage 2b, high grade ovarian cancer in September 2010.  I've been living with NED (no evidence of disease) since my front-line chemo ended in March 2011, so over 5 years of NED living.  I want nothing more than to see all of you precious ladies dance with NED.  Praying for you all.

    Warm hugs,

    Kelly

     

     

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #7
    Checking In

    I was diagnosed with stage IIIc papillary serous adenocarcinoma, high grade, in July of 2009.  I am BRCA1 positive.  I underwent debulking surgery which was suboptimal, as fully involved lymph nodes, a tumor on my liver, and some cancer on my colon could not be removed.  I received an experimental dose of Gemzar and Taxotere, because my gyn/onc did not believe that the conventional drugs would work for me, but I opted to change to Carbo/Taxol/Avastin after that.  For the two months following surgery, I was drained of ascites over a dozen times and was put on IV nutrition (TPN) for three months.  I received 8 rounds of the Carbo/Taxol/Avastin and continued with Avastin for 11 more rounds.  I also pursued integrative treatment at a hospital in Mexico and IV vitamin C throughout my treatment.  I have been NED since March, 2010.  I took a long break from this board but have recently been checking in on occasion.  I too was heart broken to hear about Alexandra.  She was an amazing woman. 

    Best wishes,

    Kate

  • Missjessicalyn
    Missjessicalyn Member Posts: 10
    edited May 2016 #8
    checking in

    I was diagnosed with stage IIA ovarian carcinosarcoma in 9/15. Had debulking surgery and 6 rounds of carb/taxol. Finished chemo in early March 2016 and now I'm playing the waiting game. CA-125 was up slightly at 13 in April - next blood test is June 9. I've been coming to the site regularly but do not post often. 

    Jessica

  • Jhd2u
    Jhd2u Member Posts: 12
    #9
    Checking in

    Diagnosed IIIC low grade serous carcinoma a year ago. Chemo didn't work but had an excellent debulking surgery.  Anti estrogens to try to slow growth; Lotepro didn't work; trying Megestrol.  CT in ten days to see if there is growth.  New to the board, and so happy to meet such lovely cancer warriors.  :)

  • JoanC
    JoanC Member Posts: 231
    #10
    Just Checking In

    Hi all

    8 yr survivor DX in April 2008 Stage3 C No recourence since original de bulking and chemo

    I am a lurker and miss Alexandra very much.

  • Hearty Pioneer
    Hearty Pioneer Member Posts: 158
    #11
    August 2016 = 4 yrs

    This August I will be a 4 year survivor. I still see my oncologist every 4 months. Thankful each day. 

  • Chris3
    Chris3 Member Posts: 58
    #12
    Good to receive updates from you all

    This forum did go silent for a while.  It is so good to get updates from all of you.  Maybe we can breathe new life into this forum.  (Forum sounds so impersonal so I will call this a Sisterhood instead.)

  • Ms. Vic
    Ms. Vic Member Posts: 7
    #13
    Tethys41 said:

    Checking In

    I was diagnosed with stage IIIc papillary serous adenocarcinoma, high grade, in July of 2009.  I am BRCA1 positive.  I underwent debulking surgery which was suboptimal, as fully involved lymph nodes, a tumor on my liver, and some cancer on my colon could not be removed.  I received an experimental dose of Gemzar and Taxotere, because my gyn/onc did not believe that the conventional drugs would work for me, but I opted to change to Carbo/Taxol/Avastin after that.  For the two months following surgery, I was drained of ascites over a dozen times and was put on IV nutrition (TPN) for three months.  I received 8 rounds of the Carbo/Taxol/Avastin and continued with Avastin for 11 more rounds.  I also pursued integrative treatment at a hospital in Mexico and IV vitamin C throughout my treatment.  I have been NED since March, 2010.  I took a long break from this board but have recently been checking in on occasion.  I too was heart broken to hear about Alexandra.  She was an amazing woman. 

    Best wishes,

    Kate

    Kate, how did you go about

    Kate, how did you go about pursuing the treatment in Mexico? Would you be willing to share?  I am still in the process of getting a firm diagnsosis, seeing gynecologist tomorrow and hopefully then a referral to an oncologist.  I would like to know all of my options, even those not readily talked about or made available.    The most optimistic thing for me so see here is the long term survivors!!!  

    Best to all

    Vickie

  • Jue
    Jue Member Posts: 80
    #14
    Hi everyone

    hello to you all , still here after 2 years currently fighting first recurrence , been on chemo 10 months hopefully found something that is now working ca125 slowly going down .    Loving still being here with my husband and family .best wishes to you all  . Jue x

  • bigjohnaz
    bigjohnaz Member Posts: 9
    #15
    Supportive husband learning all I can from you ladies

    Michele had her 2nd chemo today, but she calls it her "Cleansing Treatments". She was only sick last Wednesday night and all day Thursday from her first week. Other than that, symptoms from chemo have been very mild for her. Today was super easy with the one single drug. She's looking forward to the 4th treatment so she can see how her ca125 count is at. Everyone is such an inspiration to me......big john

  • Vickierph
    Vickierph Member Posts: 12
    #16
    Checking in

    Was diagnosed with stage 1c in 1/2013. Had hysterectomy and 4 rounds of taxol/carbo. I am BRCA negative. In 2011 had total colectomy with an internal ileostomy created. I was lucky chemo didn't effect my intestinal tract too much. CA125 has been in normal limits since chemo. Vickie

  • Doodlelady
    Doodlelady Member Posts: 3
    edited May 2016 #17
    Checking In

    13 year survivor diagnosed Dec 2003 IIIA.  No recurrence.  Feeling blessed.  Loving life everyday!!

  • JoWin615
    JoWin615 Member Posts: 150 Member
    edited June 2016 #18
    I, too, am STILL HERE!

    When I was diagnosed in February 2011 and read about the 5-year survival rate, I remember thinking that 2016 was such an eternity away. Well surprise, surprise, here we are! It is truly something to celebrate.

    I'm on Doxil/Carbo now for my second recurrence, and seem to be tolerating it pretty well. All in all, it's been an amazing five years, and I'm grateful for every minute of it.

    This checking in thing is wonderful! I know some of you from Facebook, and it's great to hear from Tethys41.

    Peace and good health for all,

    Jo

     

     

  • jsingh11
    jsingh11 Member Posts: 6
    #19
    Stage 4 Ovarian Cancer Treatment options and Survivors

    My Mother was diagnosed with Stage 4 Ovarian Cancer with metastatis and spread in Abdomen. Underwent her second chemo.

    Want to understand if there are any alternate therapies which have been tried in parallel with conventional treatment. Do's and Don'ts in terms of deight and foods.

     How to minimize the side effects of Chemo and prepare the patient for surgery emotionally and physically.

      Want to learn from the journey of survivors.

    Regards,

     

  • Julie's Sister
    Julie's Sister Member Posts: 18 Member
    #20
    Checking In

    I read this board frequently.  I was the caregiver for my sister, Julie, age 46, who passed away from ovc after 14 months.  I wrote a book about her journey with the help of many of the ladies her and on the Inspire support website.  I am not an author, just a heartbroken sister, who wants to spread awareness about ovc.  I am still interested in treatments, symptoms, etc for the other females in our famiy.  Thanks so much to all of you who share your stories.

     

  • anicca
    anicca Member Posts: 334 Member
    #21
    jsingh11

    I am so sorry your mother has joined this miserable club.

    I suggest you start a new thread for your topic and questions.  I think you may get more responses that way.  Of course, it doesn't hurt to have posted in two places.  

    Two things from my own experience with surgery & chemo:

    Peripheral neuropathy from the chemo can begin with painful foot cramping.  My doctor's Nurse Practitioner told me to take 250mg Magnesium and 50mg B6 daily to help.  It began to work almost immediately, and 6 years later, I find that if I stop, I do still get some cramping after a few days.  

    After surgery, I bloated up with gas that was extremely painful, and did not go away even after six days.  I was in agony, when I realized that the IV antibiotics I was on for the surgery must have killed off my "friendly" gut bacteria.  I sent my husband out for probiotics, and within 2 hours of the first capsule, I began to have relief, and in just another day or two, was back to normal.  The ones I took are called Critical Care by Ultimate Flora.  My husband had no idea what to get, and picked that one because of the name.  Look for them in the refrigerated section at a health food store.

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