Stage 4b Ovarian CA125 Life expentancy. - My Ovacome

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Stage 4b Ovarian CA125 Life expentancy.

Georgiatec profile image

I was diagnosed with stage 4b Ovarian cancer in November 2018. I have received chemotherapy and de bulking surgery. I am now having Avastin every 3 weeks. My CA125 is 16. Has anyone been through a similar journey how long will I have, before it's starts taking hold again? I'm desperate to know how long other ladies were given, I just think I can settle better if I know. Probably just having a bad day!

34 Replies

Hi Georgia

Yes I have days like that sometimes. I was diagnosed stage 4 in 2015- so far no recurrence. I can tell the medics think I should have it back by now. The most recent scan shows some lymph nodes either bigger or more solid than normal but they have been there for 18 months.. doing nothing.

Who knows what will happen but on my better days I just think maybe I will just carry on like this?

I am enjoying myself, I don’t want to stop but it always hangs around in the background. There are women out there who were treated for stage 4 and never recurred- so why not you and me? x

Georgiatec profile image
Georgiatec in reply to Lyndy

Thank you Lyndy 💖

Hi. I was diagnosed stage 3 in 2007, given a 'couple of years' still here despite 2 recurrences, currently NED with CA125 below 3. What I would say is try not to worry about the what ifs, live for today or basically you will just be miserable waiting for something that might not happen. Have you had counselling to help you come to terms with your diagnosis, it does help. xx Big hug, Kathy xx

Georgiatec profile image
Georgiatec in reply to Katmal-UK

Thank you Kathy 💖

Hi

I was diagnosed stage 4 in June 2016 and know exactly how you feel. It’s hard to cope with the uncertainty of if and when the cancer will return but as others have mentioned counselling really helps and it’s good to be able to discuss your fears with someone outside the family.

It’s ok to have a wobble after everything we’ve been through but try and focus on the here and now and keep busy. Don’t let the fear of what may happen tomorrow stop you enjoying today.

Love and best wishes Kim x

Kim, thank you for your comments, your right I need to stop wasting time worrying, and start living 💖

Hi

I was diagnosed with stage 4 Clear Cell in April 2014. Had very similar initial treatment to you. Not given and didn’t ask for an expiration date but everyone very negative about me lasting long.

Now on my fourth recurrence and about to start a new line of chemo. Along the way had little hiccups like heart attacks and diabetes but still living a good happy life and enjoying myself. Off on a Med family cruise next month and can’t wait to thoroughly indulge myself with copious amounts of food and drink.

The cancer feels more like a chronic disease these days. A lot of the acute fear has faded although I am still capable of a good wobble it happens much less often now.

I know it is a cliche but it really is not always about the length but what you do with it!

Lots of love

Juliax

Juliax, thank you for your reply, and you are right! Reading through all my replies, the main point is stop worrying and get on with living! It’s what I needed thank you 💖

No problem but I do understand that it is always easier to say than do. It is dreadful the places this awful disease takes us to.

But if anyone is strong enough to deal with it then woman of a certain age ( or any age actually) are the ones to do it!

Lots of love

Juliax

Hi Juliax, I also have clear cell, stage 3c but never in remission and had some metastasis in the last year. I guess that might change the stage at this point. Diagnosed in May 2017. Currently on weekly taxol with biweekly avastin.

Would you mind sharing the four chemos that you’ve been on? Sounds like you’ve had success with chemo.

Thanks,

Lucille

Hi Lucille

My initial treatment was 8 rounds of Carboplatin and Taxol , debulking surgery and then another 6 rounds of C&T ( like a G&T but no where near as pleasant). These 6 had added Avastin which continued on its own for another six months or so.

My second line was Carboplatin . 6 rounds were planned but after 3 I suddenly had an Myocardial Infarction heart attack caused by the chemo. I had emergency heart surgery but unfortunately lost 75 % of my heart function. I also developed Type 1 diabetes due to the chemo at this point. Continuing with the chemo was too risky so that line ended.

My third line was 8 rounds of Caelyx which I finished in May. Although I am still platinum sensitive Caelyx was thought to be a safer option for my heart.

I am due to start a fourth line of weekly Taxol shortly.

Not really sure how successful I have been with chemo but I do know I have been very lucky. I don’t think I have ever been in what you would call remission because the cancer has never gone away. The purpose of my chemo has always been palliative with the aim to keep it at bay for as long as possible.

All the very best with your treatment.

Love Juliax

Thanks so much for the reply. It sounds like you’ve had many challenges in the last few years. I hope you have great success with the weekly taxol😊

What travel insurance do you use xx

We use the Women’s Institute travel insurance provided by Open Travel Insurance .

I love it because there are no medical questions what so ever.

I also cover my husband and our 21 year old daughter on the policy. It is £235 for me and then a bit extra for them. It is a worldwide annual policy which covers all the usual things including my cancer.

You do have to be a WI member but that is easy to do and again not expensive.

Just google “WI travel insurance “ for the details.

Juliax

If or when you recur is a question no one will be able to answer. As you can see from the previous replies, some never recur - hopefully that will be you too. I was diagnosed 3 1/2 years ago, had surgery, IV and IP chemo and recurred 4 months after completing first line chemo. I haven’t had many breaks from treatment but the point is that even if it does happen to you,there are other treatment options. I also have not enquired as to my expiration date as at this point no one can accurately predict that. Best wishes,

The only predictable thing about OC is it's unpredictability! I pushed hard when exploring a clinical trial for time frames. I'm nearly two years over the possible prediction. Try to shelve the panic by thinking of it as wasting precious time. When you feel worry rising try to analyse if its a 'what if' or an actual true situation. What ifs are energy stealers, true situations mean you'll be too busy taking action to ruminate. I need to remind myself of this too!! 💐😘

Hi. I was diagnosed 3b at the beginning of 2016 and finished treatment August 2017. I have been expecting it to return ever since. Although I will never feel completely "safe" I have determined to live every minute of my life as well and as actively as I can. Every day brings me pleasure and I see beauty around me that I never noticed before! I like to think that cancer has given me an outlook that I never had before, and I can see this as a positive.

What I am saying is, have a little wobble, then get on with living the life you choose for yourself. Don't let cancer take any more from you.

Each of our journeys is different. I was told "2 years max" in May 2017. At that stage I had just recurred for the first time, initial diagnosis 3c. Then my second chemo failed. I have been doing alternative stuff since then and I'm still well!

Reach out and find out what you would like to do to support yourself.

What used to be important to you, may have changed.

I did take the opportunity to put some things in order, but doing so has also freed my mind of many worries.

Lind58 profile image
Lind58 in reply to recurrentovc

What alternative stuff have you been doing if you don't mind me asking?

recurrentovc profile image
recurrentovc in reply to Lind58

There is not much I haven't tried! Sugar and gluten free vegan (still eating this way 98% of the time), was the first thing I tried with a resveratrol supplement called Reserve. I had improvements for 3 months and then stability for a few more months.

Then I did a 9 juice fast with salvestrols which set me back quite a bit.

Next, in a desperate time when my CA125 was 2293, I came across artemisia and a detox herbal blend. 5hree weeks later Ca125 was in the 500's. Those also worked well together for a couple of months. Since then I have used artemisia intermittently with pretty good response most times. Be cautious of liver and iron levels if you decide to use artemisia.

Most recently I have been using repurposed drugs as per Jane Mclelland's book How to starve cancer, for the last 8 months.

(best ca125 of 214 was in March 2019) I have had great energy on this programme, even managed some running.

Now it feels like I'm in a bit of a decline again (ca125 back in the 400's) so will add some more drugs and hope for the best!

Yes! I'd very much like to know what you are doing also!

Dee345 profile image
Dee345 in reply to recurrentovc

I’m always on the lookout for alternative treatments. Would you be willing to share what seems to work for you? Big thanks and long may you stay well!!

ElayneZ profile image
ElayneZ in reply to recurrentovc

I was dx stage 3 in May 2018. Surgery - then 18 consecutive weeks of Taxol - with Carbo every 3rd week. Finished chemo Nov 1. Have monthly CA125 - averages under 6. Try to stay positive - sometimes good at it. Definitely have heard many times “different journey for each”. Would love to read about your alternative stuff. Thank you!

Hi I was diagnosed in 2012 stage 4, I have had 4 recurrences and am currently on a parp inhibitor for maintenance, I have been on this drug now for aost a year! I have never asked about time frames as lets be honest none of us know!The other ladies that have replied have given very good advise. I wish you well for the future

I have 3 C ovarian cancer. Did Avastin for a year.Had to stop due to high blood pressure and kidney problems. I have been on two different treatments since. Everything works till it doesn't. Weather that be Cancer progression or intolerable side effects. It's why we are called warriors. Its a battle. I have been fighting for 4 years. I take breaks from treatment when I'm tired or just need to recharge my body and mind. Wishing you all the best Hugs-💖

Hi Georgia, I was diagnosed Stage 4 in October 2017 following surgery in August for probable bowel cancer which turned out to have originated in the Fallopian tube. After carbo/taxol which really really effective I had about 8 months of Avastin. Last CA125 was 9, will see oncologist at the end of next month. So far so good. It wasn’t until my last PET scan in April a year after finishing chemo that I allowed myself to breathe.... there is hope and there is a light.

Sending you hugs and positive thoughts

Joy xx

Georgiatec profile image
Georgiatec in reply to JayGeeCee

Joy, thank you for your lovely message x What was your CA125 after chemotherapy, mine was 28 before Avastin x

Hi Georgiatec. I was diagnosed Nov 2011. 3c. BRCA neg. Had the usual ops & 6 months chemo. Remission for 18 months. When the OC returned I was told I probably had "2 years, maybe more" . I went onto carbo/caelyx/avastin. The avastin part was an indefinite clinical trial. I went straight into remission again. I asked again how long I had & the answer that time was "how long's a piece of string?". I've had avastin 3 weekly since and have now had 80 x 3-weekly infusions. I'm closely monitored. My latest blood results (2 wks ago) everything was normal: urine, kidney, liver, immune system etc etc.

Everything was normal, that is except my CA125 which rose to 44, then came down to 38. Not sure where I'm headed with that, but my story for the past 4.5 years of maintenance avastin, has been wonderful. Hope your story will be too. Best wishes. Pauline.

I try to remember the slogan by William Butler Yeats

'Life is a long preparation for something that never happens' ….

Ann

Hi Georgia, I was diagnosed with stage 4 OC in May 2012. I had carboplatin and taxol for 2 cycles and then carboplatin only for 4 more cycles because I developed severe peripheral neuropathy in my hands. I had interval debulking surgery and 18 doses of Avastin which was started with my last cycle of chemotherapy in October 2012. I had no evidence of disease from October 2012 and my CA 125 was always between 11 and 13 until Jan 2016 when my CA 125 went up to 32 and a scan showed an increase in size of one lymph node in the chest. 3 months later the node had increased in size and the CA 125 was up as well. I chose to be monitored every 3 months because my quality of life was very good and I did not want to have any investigative surgery to test whether the lymph node was a metastasis of ovarian cancer or a new type of cancer. I had video assisted cardio-thoracic surgery in March 2017 because by then the node was pressing on my vocal chord and had grown considerably bigger. Fortunately, the surgeon was able to remove the whole node which resulted in my CA 125 going down from 137 to 17. It had been a recurrence of OC. I did not need any further treatment and I have been fine since then. I have never asked about how long I have to live and instead of saying I am in remission I say my mission is to thrive and enjoy life. I went to Penny Brohn Cancer Care Centre in Bristol in 2015 with my husband and I found the Living Well course to be very informative and helped me understand how important it was to change things in my life. I have been there every year since 2017 for different retreats and always come back equipped with new tools to help me live better with cancer. I feel very blessed to be able to enjoy every moment of my life just over 7 years after being diagnosed with stage 4 high grade serious ovarian cancer. As you can see from everybody's posts, each one of us has responded differently to different treatments as each person is different. My advice to you would be try not to think about how long it would be before it takes hold again. Try to think about how well you are feeling and do what you enjoy doing. There will no doubt be some bad days when you may feel low and tired so just rest on those days and then get back to living and enjoying life. The most important thing that I have learnt in the last 7 years is there are so many new types of treatments available and so many other holistic care options which give me a lot of hope for the future. I wish you well and do make sure you look after yourself and rest when you need to. Take care, Samixa

Lind58 profile image
Lind58 in reply to Cinderella

Can you share what holistic treatments you have done?

Cinderella profile image
Cinderella in reply to Lind58

I had reflexology, reiki and massage at the cancer centre when I was having chemotherapy and after my surgery. I have also had acupuncture a couple of years ago. I take Menopace and Starflower Oil capsules. I was told by an integrated healthcare doctor that I should make sure my Vitamin D levels are above 75 nanomols/L so I take a vitamin D supplement and get my level monitored annually. I try to meditate every day and did a course in mindfulness in 2013 so I try to use that in my daily life too. I pace myself so that I do not feel overwhelmed and try to do things I enjoy at least two to three times a week. I also walk as much as possible and have a massage every 4 to 6 weeks if possible. I try to do things that bring me joy and try to be grateful for all that I have. I have picked up things as I have been to different talks or holistic retreats over the years and decide what is going to be good for me and easy for me to do so that I can do it regularly.

Thank you so much for your lovely reply. I found your story so inspirational and positive x All the very best for your future x

Thank you and I wish you all the very best for your future too X X

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