My ovarian cancer story thus far

[Gabbygoose]

In dec2018 after experiencing abdominal distention I was diagnosed with stage 3c ov did chemo 3 rounds Carbo/Taxol total debulking then 3 more rounds of chemo I had normal ca125 until yesterday it was 57 I have no symptoms so now the scans start I am73 pretty much alone since Covid at this age is isolating I am from NY a retired nurse and would like to share with people going through the same ordeal. While people mean well they can say the most disturbing things therefore making me doubt hope

[Tesla_7US]

Do NOT listen to what anyone but your doctor says. I'm HGSE OC 3C. I've been fighting this for 7 years. I've had 3 recurrences and took Olaparib for 19 months. There are plenty of treatment options for you. Hugs to you. ❤💗❤💗❤💗❤💓❤

[Gabbygoose in reply to Tesla_7US]

After 2 1/2 years my tumor marker went from 13 to 57 I scheduled my ct scan for this Sat. My md wants it done sooner so it will be done this Wed. So a little freaked out about this urgency well maybe she just has weekend plans

[MarleyZ]

Unless they are attached to the hospital or oncology or cancer unit that you are at, it's irrevlant what they say, don't be listening to people tell you their experiences based on what they have heard from a friend's friend etc a person who has walked the same path you do will never judge or dare tell you something isn't so, that's be difference, on here your not alone, this forum is made up from teal women warrior's across the globe, there is almost always someone here who can help make that difference. I wish you well and hope you know even if you are isolating very much what am doing that you are not alone.

[Ruebacelle]

Hi. I'm an american living in paris OC 3c hgs August 2015. 1st line carbo taxol x 6 then radical mastectomy 2nd line carbo x3 plus avastin x17. Remission 1 year. 3rd line carbo gemzar x5 months one transfusion. Stopped as it didn't work. 4th line doxil x6 partially worked. Emerg operation occlusion 5th line taxol 7 months it worked booster shots throughout. Pause while I recov ered 4 months. Now on 6th line carbo x 12 plus radiation daily for 5 weeks. In 7th year. Have 1 1" tumor on inguinal left node.I pay attention to diet but I self medicate w chocolate. Now have to take xarelto as cancer and chemo tend to clot so almost no wine and am very careful not to fall. Phys therapist comes 2xwk to force me to exercise . Walk dog. Play w cat. Read the new yorker and NYRB and binge on TV series. Eat well w friends. Ballet and opera. Life goes on. Push thru the fatigue and also give in to it. After a while it becomes funny. Where do you live in NY? I have friends in Chelsea and along hudson if you wd like I can ask them to reach out. Love from Paris

[delia2 in reply to Ruebacelle]

Hi. I take Xaralto too and no one told me not to drink? It’s too late now! 🤣

[Gabbygoose in reply to delia2]

Dear Delia after reading your war story I think a drink is probably beneficial however we must follow doctors orders😉 I actually live on Long Island have been in the same home for50 years after beeing 3years Ned last Friday my tumor marker is at 57 however when first diagnosed it was 4700 so I am pretty sure I can handle 57 I should hear tomorrow about my treatment plan feeling great I think I am going to blame the fact I cut down on drinking my wine

[Ruebacelle in reply to delia2]

Well...alcohol is a blood thinner so it's doubling up on blood thinners if you fall or bleed the concern is stopping the bleed. here they say every once in a while and just a little.

[GramJ in reply to Ruebacelle]

Hi Ruebacelle! You have certainly been a trooper to have battled your cancer for so long. It amazes me that all of the people on this site have such strength! I am on my 6th day after my 3rd taxol/carbo and I’m so weak. I will be better in about 3 or 4 days I’m sure. Take care .GramJ

[Tillymint61]

I am so sorry to hear this . Don't loose hope. It is always with us. Hope is at times harder to find but it always there. Be kind to yourself. Accept this awful news allow yourself to feel this way and then hope will find itself back into your life. Other people feel they have to say something so often say the wrong thing try to brush theses comments aside. Come into this group when they do and offload. You can Believe everyone in here understands and will have gone through the same emotions. Xxx

[Gabbygoose in reply to Tillymint61]

Dear Tillymint61 I ended my message by saying I cut down on drinking wine you started your message by saying you were sorry to hear that I thought that was kinda funny I realized latter it was about my tumor marker sometimes people should just zip it but they can’t until I entered this forum I did not realize how this is chronic not deadly the highs and lows are difficult but this is our path thank God for this forum

[Tillymint61 in reply to Gabbygoose]

Haha! I see what you mean. My reply was in response to your original post! I have never been told not to drink it just kinda made sense not to give my liver any more work to do. I will however be having a drink on Christmas Day. Haven't yet decided wether it will be a buck's fizz with breakfast or a glass of wine with Christmas dinner. I will toast all of us too

🥂or🍷cheers.xx

[WildflowerTheWarrior]

Only YOU own your own hope. Don’t let anyone steal that away from you. Keep the faith. Love to you.

[GramJ]

Hi Gabbygoose, I’m new to this site and new to OC. I was diagnosed with Peritoneal cancer in August. I guess PC cancer is treated the same, same type of cells. I am currently doing chemo, PAClitaxol and CARBOplatin. I’ve done 3 so far. I’ve had very low neutraphils and red blood cells, so I just had a dose of Neulastin to grow more cells. Also they changed my treatments to every 4 weeks instead of 3. I’m also getting up there in age; I’m 76. After the first treatment I was in the hospital for 4 days. I ended up with Afib, and had a cardioversion. I’ve been good since then. I’m probably going to have debulking surgery in Jan. if my scan looks good. I live in Michigan. I know what it’s like when friends tell you so and so had this or that. They don’t understand how there are different amounts of chemo and everyone has different side effects. I just tune that part out now, they honestly don’t know what to say. I have some good prayer warriors working for me, I am very blessed. I wish you well and pray that your scans are negative. GramJ

[TNkit in reply to GramJ]

Gram we are in a similar situation. I too was diagnosed with PPC stage 2b high grade. I was diagnosed in March 2019 at age 70. Had surgery and 6 rounds of carbo/taxol. Have been NED since last chemo in September 2019. Hopefully you too will be NED after chemo. I am in Tennessee. Would love to keep in touch. Sending 🙏🙏.

[Pianoplayer731021 in reply to TNkit]

Hi GramJ, I was diagnosed with ovarian stage 3/4 in 2019. I had 4 rounds of chemo, debulking and 3 more rounds of chemo. I take niraparib daily, and have had some side effects. Just wanted to let you know that I live in Michigan also and I am 75. I believe there are a few of us older gals on here. Tin kit just replied to you also. The power of prayer and my faith is what keeps me going. Yes, everyone’s chemo is different and their health in general. Wishing you well with your journey. Donna xx

[GramJ in reply to TNkit]

Hi TNkit! They haven’t graded my POC yet, just that it is high grade serous c . I guess they do that during surgery, which I will have after 4th infusion. I have it on the omentum and peritoneum. Is that how yours was? So happy that you are NED! I sure hope I get there too!GramJ

[TNkit in reply to GramJ]

No mine tumor was between vaginal wall and bladderNot sure where peritoneum is in relation to that

[Gabbygoose in reply to GramJ]

Dear Gram J I was diagnosed on my 70th birthday Nov of 2018 how I dreaded turning 70 I was going to reward myself with a facelift WRONG instead I had chemo 3 rounds carb/tax which other then loosing my hair gave me no problem where I ran into difficulties was recovering from surgery as my surgeon said after a month you will be up and running allow ample time to recuperate I know we are all different however a month is not realistic ten finished chemo and did very well until 2 days ago when tumor markers started to rise but after he added ring some amazing stories there is plenty of hope unfortunately this cancer is considered rare and this justifies funding into research - I rarely tell my story to anyone finding this forum has allowed me the freedom of talking to the right people bless you all

[GramJ in reply to Gabbygoose]

Hi Gabbygoose, That wasn’t a very good 70th birthday. This seems to be a great place to let our thoughts, fears and joy out without judgement. With the Covid issue there aren’t any personal meetings by me. So this may be my go to for answers and inspiration. Take care of yourself.GramJ

[Hidden]

You are definitely not alone. I am 81, close to 82 ! I have been NED (stage 3) for over 3 years. My 125 started creeping up earlier this year. PetScan was clear. I test every month & last week was 48.9. I am so scared. My appt. is in a few days. Hopefully, she will order scan. I have never been on any maintenance drugs. I am so leary of any new treatment not only because of cost, which is prohibitive, but side effects. I am very medicine sensitive and get sick from most. At my age, if there is a recurrence , not sure I will take any meds. My husband is not very kind to me at all. He lost his first wife to Cancer, as I did, my husband. We have been married 17 years and he never gives me any love or support...."do what you want" ! It's so difficult to handle this alone. I think it makes me dwell on it more and feel sick all the time. So I can fully understand your situation. Like others have said, only listen or read advice from actual survivors/patients. NO ONE has a clue otherwise what Cancer is like or anything about treatment. I am originally from NY, but have lived in AZ almost 30 years now. Best Wishes for you and contact me any time. Keep us posted. Much love & blessings. Barbara

[Gabbygoose in reply to Hidden]

Dear Chase not only am I new to this site but I am new to social media. I can barely dial a cell phone. True story about a week ago while waiting for lab results I was really depressed as l was attempting to call my son this Share number came across my screen leery of scammers and sad stories it took me quite awhile to man up and call-it was as if an angel was on the phone - a women had been diagnosed with st3ov in2003 had 2 reoccurrences has been Ned since 2017 and is preparing to run in the NY marathon there is a lot of hope out there I was inspired by her story esp. since after a 21/2 honeymoon of normal markers my last one was elevated however this forum provides hope and some cases at advanced stages and they are doing very well unfortunately I don’t have a strong support group I find people are more curious than supportive my children can’t put their phones down long enough to listen to me please feel free to share anytime😇

[Hidden in reply to Gabbygoose]

Oh my, how I wish you were my neighbor!! A few of mine know, but never inquire. Even my husband's family, which is quite large, just say "call if you need anything." I have 2 sons, both live in Charlotte NC. I spent 2 weeks with them in September and came home with bronchitis. Haven't been well ever since. Yes, you must keep up the positive thoughts and the encouraging stories on here. I also belonged to one on FB but it got so depressing, I dropped out. Where do you live in NY ? Keep in touch, please. 😉

[mizpurple]

Hi Gabbygoose - I'm glad your initial treatment was successful for the past few years, even though this pandemic has effectively robbed you of some of that time. But do take heart, as many of us can attest, new treatments are available and may work for you also. I do know what you're talking about with regard to people who seem to say the most annoying and hurtful things, even obliviously, when you are already at your limit. I was fortunate that when I was starting treatment back in 2016, our local cancer center had a group of us that met to support each other and share our experiences. This was so helpful! We continue to meet virtually, and though it isn't quite the same, it is still comforting. We are also offered free counseling services through the cancer center, and I have been helped by that in some of the worst times. You might look for similar resources in your area. And of course, the wonderful ladies of Ovacome have lots of support and advice to share. Best wishes to you! Deb in Colorado

[Gabbygoose in reply to mizpurple]

Dear mizpurple initial diagnosis was while I was in florida did treatment there returned to my NYhome have been Ned until last Friday so knowing what is ahead I might be able to find a support net work however for now I find you ladies on this forum inspiring amazing and beautiful - I have never face booked instagrammed or tweeted this is my first time opening up on a social media platform and it has been nothing but positive feedback and hope

[delia2]

Hi. I know what you mean about how people’s comments can plunge you into despair or else really irritate. Even if you are having a recurrence you’ve had a relatively long period of being ned which is a good sign. I was diagnosed a few months before you and recurred nine months after frontline chemo ended. I had doxil/caelyx and carbo and have been on a PARP since then doing fine except for fatigue. Try not to panic until you have a scan and see what your onc says. Xx

[Gabbygoose]

Dear Delia By my own choosing I pretty much keep to myself - I was diagnosed 3 years ago at holiday time did chemo debulking more chemo and was doing very well - my neighbor who I see when out in the yard seems to think I want to hear about all the people she knows that have succumbed to cancerNoNoandNo so that is why this forum is so important my only concern now with the holidays and the rising of vivid scheduling scans should be a disaster😷