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Survived 32.5 years...where are you???

gina67
1 Recommendation

Hello there,

I was reading through the posts and read one from a lady on here who was diagnosed 32.5 years ago. I have tried to find the post again, and now I can't. If you are reading this, and forgive me, I do not remember your name (or screen name) can you please tell us more about yourself? What stage, grade, type of OVCA do you have? I found what you had to say very inspiring. I can't speak for others on this site...but I could use another success story.

Thank you.
Gina

Explore topics in this discussion:

Cancer Surgery Ovarian cancer Anxiety Hernia Chemotherapy Prozac Carboplatin Taxol Hysterectomy Uterine cancer Panic disorder Melanoma Breast cancer Lung cancer Depression Diarrhea

30 replies

eveski

i am not the lady you are referring to. i just joined today. however, i had ovarian cancer 26 years ago and had been in remission until 8 weeks ago when my CA125 did a jump.. My oncologist insisted on CA125's to be done every year for the rest of my life (thank God) My CA125 had been going up and down for the last 4 years, like up to 41 and then back to normal in 6 months, up to 58 and down to 25 in 6 months. and 8 weeks ago it kicked up to 168, and within a week up to 251. i had pet scan done and biopsy and have my orginal oncologist ( who i love dearly) i am half way thru my chemo of Taxol and Carboplatin. he recommended once a week for 12 -16 weeks and i can go for another 26 years. I will have a CA125 done this week to determine if i am half way thru. i have a wonderful support group, family and friends.
keep the faith and laugh alot
hope this helps.
eve

Jen123

Eveski, you are an inspiration to the rest of us-many newly diagnosed or having several recurrences who constantly worry about our outcomes.

We need to hear from long term survivors like you who by sharing give the rest us hope.

Thank you so much for sharing your story and please do keep us updated with your present treatment.

jolock2004

What an amazing story and it gave me hope. Right now i really needed to read this as it looks like I'm facing yet another recurrence. This will be the 3rd recurrence and I just ended chemo for the 2nd recurrence on June of this year. Thanks for posting~~~Joanne

rhino718

hi gina---actually it has been 37.5 yrs. and i was 29 at the time and i just has my 67th birthday.i had oral chemo back in 71 before they even had a name for the type of cancer we have(serous papillary) this is a very low grade of ovc and it is very slow growing and takes a while to actually make itself know to you. The one thing about it is it doesn't go into remission persa. gina i would be more than happy to discuss this with you on a land line. it would take to long to tell you all in an email.. Please don't get to anxious about the cancer showing itself. You will be around for quit a while yet. I work during the day but i am home after 7 pm. My # is 561-333-6768 i haave answering machine so in case you call and i'm not at home leave a # and i will call you back. First name is Gerry

Randie

Dear Gerry & Eveski,
You are both what we need more of and that is hope. G-d bless both of you.I will add you to my prayers and I thank you both so very much for taking the time to share.
Blessings,
Randie

sbender3

IT IS GREAT TO HEAR ABOUT LONG TIME SURVIVORS-I JUST CAME HOME FROM A GOLF OUTING FOR BREAST CANCER-I WORE MY TEAL OVARIAN CANCER OVATIONS TSHIRT-HAD ONE OR TWO LADIES TELL ME I SHOULD HAVE WORN PINK. I TOLD THEM OVARIAN AND BREAST CANCER ARE SISTER CANCERS, AND SINCE I HAVE CANCER-AND MINE IS TEAL, I WORE MY COLOR-I DID HAVE ON FOOTIES WITH PINK WRITING-PRECPT, AND A PINK GLOVE, AND PINK UNDERWEAR-HAHA. ANYWAY, THEY TALKED ABOUT BREAST CANCER AND HOW 1 IN 8 WILL GET IT, AND 25% WILL DIE FROM BREAT CANCER-I SAID, I WOULD RATHER HAVE THOSE ODDS THAT THE HAND WE ARE DEALT---1 IN 59, AND A 20% CHANCE OF 5 YEAR SURVIVAL, AND WE GET TO LIVE BY STAYING ON CHEMOTHERAPY-WITH GOD AT OUR SIDE. ANYWAY, KUDOS TO YOU.....WE NEED MORE OVARIAN CANCER GOLF OUTINGS AND MORE AWARENESS. I CAN'T TELL YOU HOW MANY PEOPLE SAID I DIDN'T KNOW YOU EVEN HAD A COLOR-SICKENING....SHERRY

SouthernBelle

Wow both of you have long term survival and that is what I needed to hear. I was diagnosed with Stage 1A ovarian and uterine cancer and both are slow growing Endometrioid but in the back of my mind I keep thinking that it will come back. I was diagnosed 5 months ago and read the stories of survivors and they are such an inspiration. Thank you for sharing your life with us.

PattyKey

Hi Gerry. I noticed your 561 area code and was wondering who your doctor is and if you are a patient at Good Sam. Cancer Center. I'm guessing you are from the Palm Beach area. I am a nine year survivor with one recurrence four years ago. It is extremely uplifting to hear stories of women who have stayed cancer free for so long. Thanks for yours. Patty

jbs49

I had oc 22 and1/2 years ago

FavoriteAunt

Wow, I'm glad this topic started because I am very inspired by the responses. Congratulations!!! You ladies are real champions. Anyone having been treated more than 20 years ago, with very different meds, deserves a medal and a very long, happy life.

I'm heading towards 8 years as a stage IIIC survivor, and I always feel encouraged when I hear these stories. I had my first recurrence last year and, like everyone else, live in fear and anxiety all the time. But we can survive, and we will.

God bless all of you - the longtimers and the newcomers, and all the rest in between.
Jo

gikgik

wow!!! hi ladies ... i was inspired with the stories of Gina & Eveski.oh la la la ...you a real champion guys.I really need this inspiration. We will survive. God Loves us.

gpawelski

Gerry (rhino718)

I am interested to know what "oral chemo" you received back in 1971. My wife had been diagnosed with ovarian cancer in 1972, when she presented with a left DVT and pleural effusion. Pleural effusion is evidence of stage IV disease. She received talc pleurodesis, which is common treatment modality for patients with malignant pleural effusion, secondary to ovarian cancer. She was treated with total abdominal hysterectomy and Chlorambucil (Leukeren), an "oral chemo." She went 24 years before experiencing any recurrent ovarian cancer. Like you, Taxol did not work, after her first metastatic recurrence to her diaphragm in 1996, after having a extrapleural pneumonectomy.

gina67

Hello gikgik,

Just wanted to say that I do not have ovca, I apologize if I misled you. My wife Johanne has stage IV ovca. She is not much into using the computer, but I very much appreciate being able to come on this site and reading the stories here. I always pass the info and stories onto Johanne and she is always happy to hear about the survivor stories.

Take care,
Gina

Jean1

Wow, I'm so glad to hear these disscusions. I had stage lll three years ago and you just gave me hope!.

MrsSumners

SBender3,
Good for you! I am glad I wasn't there.. that situation you experienced made me burst out into tears- how frustrating that the awareness of our Cancer is so dim. We have the best attitudes and strength though!! KUDOS to all of you!

sbender3

IT IS HARD SOMETIMES TO KEEP THE SMILEY FACE-IF IT WASN'T FOR THE LORD, AND HIS PROMISES THAT SCRIPTURE TELLS US THAT THE DEVIL IS LIKE A LION ROAMING AROUND SEEKING OUT WHOM HE CAN DESRTOY-BUT THOSE OF US WHO HAVE FAITH, REALIZE THAT OUR BRETHREN THRU THE WORLD SUFFER THE SAME AFFLICTIONS. AND AFTER THAT WE SUFFER A LITTLE WHILE, GOD WILL STRENGTHEN US, SETTLE US AND MAKE US WHOLE AGAIN. THOSE WORDS GIVE ME STRENGTH, KEEP ME GOING. THE PAST 2 YEARS HAVE GONE SO FAST-NOW I HAVE STARTED MY THIRD YEAR-I MAY NOT BE CANCER FREE-BUT I AM A SURVIVOR EVERY DAY I LIVE WITH THIS DISEASE, AND I CHOOSE TO LIVE A LONG TIME.....GOD BLESS. SHERRY

grammy_linda

gina
most likely found her OVCA at early stage ( again most likely by accident) I personally know that more than just one has survived over 30 years.
My younger sister was a 3c at diagnosis and told when she left the hospital after initial surgery( and was going to do the standard protocol for chemo after max debulking and second look surgery-with a top specialist in OVCA Scott Eisenkop) that "she had every right to a normal life expectancy!" she is now 7 years without any recurrence.
oops just read that she responded earlier....and answered that question.
as for years of testing, my grand mother was given carbo/taxol as expermental in 1962/ as was her sister in 1960 ( both in San Francisco at the Army base hospital)
Hugs
Linda

acosta1027

I just read the posting by the lady who accepted hospice and was quite upset by it. Finding this posting reminds me that there is hope and many do survive this horrible disease! Thank you for initiating this discussion!

JoAnne
Diagnosed 01/07
Stage IIIC

Rose2

Eveski, What stage were you diagnosed with 26 years ago? Most of us are in later stages, I am in stage IIIC.

rhino718

Patty--the cancer has never been in remission. It was so slow growing that i nver knew when or where it was also no elevated CA125. I have since been able to tell when i am getting new growths. I get an over whelming desire to sleep so much so i can't keep my eyes open and it can happen anytime of day. I finally figured out that it needs what ever protein my body makes to feed itself. When they have grown to the size they want to be i loose the sleepiness. Also my eating habits change and my body functions. So i'm sure these have occured with you and many of the other women out there. Everyone needs to pay attention to their bodies. You know yourself better than the doctors do and they should pay more attention to what you have to say. I may be alittle worse for wear but i won't do chemo(does not work on low grade ovc) and i won't be a" well we should try this it might work." No thanks i like having some quality of life. I don't advocate this to others as it is a personal choice. Me I'm not afraid of the cancer as much as i am what they want to give us for it. Been there done that won't go there again. They don't tell you all the reprucussions that can come form the the chemo. Hving ahad 5 treatments of taxol/cisplain that did not work they managed to desory the integerity of my vaculars system and i have COPD because the lung tissue was thinned down from the drugs. So between the man upstairs and myself i have managed to beat the odds and the doctors. Amazing what our bodies can do for us. Sure does make the doctors wonder, which is a good thing. So girl don't sit around waiting and wasting your life , get on with it. if you want to call me my # 561-333 6768 and iam home after 7. I also work everyday. LOL:)

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