Best wishes to each of us!

[ElayneZ]

Hi - I’m 65 - was diagnosed May 2018 - OC stage 3a. Had hysterectomy in June - then 18 weeks Taxol with every 3rd week Carbo too. Finished chemo end of October and finally feeling a bit stronger and hair is returning. Ca125 was initially over 2500 - but since surgery and throughout chemo stayed under 10. I truly appreciate and read through your posts here almost daily. My question is - are there ladies that have not had a recurrence? Or at least - how long before recurrence? Thank you and blessings!

[January-2016-UK]

My CA-125 only got down to 35 so although I was stated to have a complete response because I was also no evidence of disease after my op, perhaps that’s why I recurred within three months.

I was Stage 3C ovarian carcinosarcoma. Good luck you seem to have done very well.

Happy 2019, time to enjoy now the chemos finished.

[Hidden]

I didn't recur for three years and have continued to recur but I am here alive and kicking

[Caroles1]

Don’t really want to jinx it, but I am coming up for 4 years in March, I don’t have time to be ill and that is how I cope, litteraly!

I looked after my Mum and Dad for about 15 years and after they passed, I got ill, so now I look after my kids and grandkids and keep myself busy and I’m doing o.k. so far, but Im not stupid.

My advice is not to think about what may not happen, just get on with living life.

No one knows what tomorrow holds wether ther have this or not,

Love,

Carole xxx

[ElayneZ in reply to Caroles1]

Thank you. And congratulations!! As positive as I almost always am - sometimes the wheels start spinning with so many unknowns. I live 100 miles from closest family so I wonder if I should relocate closer - and leave my home of 40 years. I’ve kept the port in - and wonder how long I should. And so it goes! Thanks again!

[Caroles1 in reply to ElayneZ]

Hi,

My mum and dad lived 2 hours journey from me, in the end we all realised they had to move local for me to look after them. I was working and looking after a family and had to go down to them a couple of weekends a month and when I did, I hit the ground running!

Shopping, housework, gardening ect. Too busy to spend quality time.

They wouldn’t accept help from anyone except me and it was all too much.

I would do some thinking to see if you can move nearer to your family, it is important to get support from those closest to you, without becoming a burden,

Kind regards,

Carole xx

[lorraine71-Australia]

Hi, I just would like to say I'm glad you found this community, the ladies are here to give you support and advice when ever you need it.

Your125 is great 10 is well below normal range I hope this continue for a very longtime.. Take care now and now enjoy your life Lorraine xx

[Lindaura]

Dear Elayne,

You do pose several quandaries.

I live in the UK, but the rest of my close family is in the USA, mainly in Marina Del Rey and San Francisco.

I was lucky when I fell ill, because one sister had retired and was happy to come to Bath to help my husband and daughter care for me during Chemo.

I was frightfully ill and we really needed the help and companionship she offered.

Friends here have been wonderful too.

After first line, I grew stronger every day. I was already a vegetarian, but I committed to going Vegan to be even healthier and took the recommendations for supplements that fight cancer.

After my 3 months’ check up came out clear, I was on top of the world. Certain, that with my great diet, I was going to be one of the lucky ones who did not recur.

My hair grew in a new colour and exceedingly curly, but I got used to it and I was able to walk 2 miles every day. I also managed to get back to the USA for a much needed visit with my 96 year old mother and my three siblings.

If you are close to your family, now would be a good time to think about moving closer. It’s situations like this that make us realise how fragile our lives actually are and that family and good friends are truly important.

Meanwhile, at my six month check up, we found that my cancer had recurred. Not too badly, only on my peritoneum, and not inside any organs, but I am currently on Carboplatin and Caelyx, much more manageable than my first line, but I had to have a port inserted, without sedation, and I found that very traumatic, so when this treatment is finished, I also think I will keep the Port just in case. Maybe for 6 months.

Although my plan is to go on a PARP inhibitor, and since I am BRCA1 positive, I am convinced that I won’t have another recurrence. Obviously not convinced enough to give up the port...

It seems so very unfair, that we must make such immense decisions all the time now.

A little while ago, we thought we were invincible, but now everything is a matter of life and death.

But, we keep on keeping on. And friends and family can prove to be invaluable support along with this incredible forum here at Ovacome.

Hugs,

Laura

[ElayneZ in reply to Lindaura]

Thank you Laura. This is an incredible forum! I live about 30 miles from San Francisco. So glad you were able to come visit family! And wonderful a sister came to help! My husband passed 14 yrs ago and nearest family is 100 miles from me. We are a close family - they had figured out a calendar so there was a family member that drove or flew into town to be with me EACH week of chemo. Such a blessing! That’s what has me thinking that before a recurrence might happen, I should be responsible and move closer towards family. I did the gene test and it came back negative. I think I likely got OC from using talc powder - with asbestos - after daily showeris through the 70’s and 80’s. Thank you for your words. And yes - we keep on keeping on! Take good care!

[scraggs in reply to ElayneZ]

What type do you have? I also used baby powder head to toe in the 70 s and 80 s

[ElayneZ in reply to scraggs]

What “type” of OC do I have? I was told stage 3 - Grade 3A. What about you?

[scraggs in reply to ElayneZ]

Mine is mucinous ademocarcinoma stage 1 as the surgeon optimally debulked me. I had a colonoscopy and endoscopy all clear in Aug but I havn t had a check because my Dr. is on mat leave. I am supposed to be checked every three months but I havn t had one yet.They will call me when she is back .I think about 7 months.My surgery was also in Aug. This still feels new to me but its been 6 months.Time flies for me lol I hope when I m checked it will be good .Just keep dodging bullets .lol

[ElayneZ in reply to scraggs]

My OC is Serous Adenocarcinoma. My surgery was mid May. Weekly Chemo ended end of Oct. I will see oncologist every 4 months this year - then 6 months next year. That’s great you were Stage 1 - and wonderful your scans were both clear in August! I had little symptoms other than pressure in my lower belly for couple weeks. Then after a chiropractor appt that she eliminated the pressure in the belly - I spotted after pee’ing that evening. My surgery was one week later. Best thoughts to you!! Take care!

[grammeejill]

I am 3 years and 4 months past diagnoses. OC 3b. No recurrences. CA125 was only 45 at diagnosis, staying at 6 or below since.

[ElayneZ in reply to grammeejill]

Gosh that is truly great to read! Thank you for sharing! Continued good health! Happy New Year!

[Purple-iris]

Hi

I was diagnosed stage 4 high grade serous in June 2016 whilst on holiday in Mauritius and told I was inoperable before the chemo luckily did it’s thing. Had surgery Nov 2016 , finished first line chemo Jan 2017 and was on Avastin for a year until end Jan 2018 so almost a year since no maintenance treatment or 2 years since end of chemo. CA125 was 3880 when diagnosed now 8 .

Was told by the first uk dr I saw that it would come back ! So feel that I’m a living timebomb.

Keeping everything crossed and due a big scan at end of month.

Wouldn’t have got through it without the practical support of family and friends who are mostly local but it was also the support from others further away who would send regular messages and phone calls that helped me mentally. Also this amazing forum 💜

I needed counselling to help rebuild my life after the shock diagnosis and am now trying to live in the moment and make the most of each new day. It’s hard though having to make decisions for the future when we have had to so cruelly confront our own mortality and there are so many unknowns but as others have said there are no guarantees in this life and no one knows what tomorrow brings with or without cancer.

I now look at it that every day is a bonus, I’m lucky to still be here as well as I am and I’ve wasted enough time worrying about things that haven’t happened yet!

Also feel I owe it to those teal angels that are no longer here to live my life to the full and do what I can to raise awareness and funds about this relentless disease.

Am so pleased to hear your treatment has been successful and you are now beginning to recover physically, it takes time to recover mentally as well especially when the active treatment stops.

Wishing you a happy and healthy 2019 love Kim 💜

[ElayneZ in reply to Purple-iris]

All so true! Thank you for sharing! I’m 2 months post chemo and yet the physical and mental fatigue is still so present. I know fatigue has improved but I do listen to my body and rest as needed daily. Again thank you! Best wishes for good health and happiness each day!!

[ZenaJ]

Hi Elayne,

Happy New Year. I'm sure there are many of us that haven't had a recurrence. I'm one of the lucky ones. It's been 5 years since I finished my chemo and all I've had is a bowel blockage. i was diagnosed stage 3C. I consider myself very lucky and there's no reason why you shouldn't be either.

Best wishes and all the very best, Zena xx

[ElayneZ in reply to ZenaJ]

Thank you Zena! So encouraging to read your post. Bless you!

[Hidden]

Hi Elayne. I am very similar to you...diagnosed 3C in March 2017 with a CA125 of 2056. Surgery May 2017, 18 consecutive weeks of chemo between June and October 2017. Lost hair, energy, etc. CA125 dropped to 28 at the end of chemo, and dropped further to low of 12 over next few months. Currently NED with a CA125 of 13. Had my port removed three months post chemo as it bothered me to be so “ready” for additional treatment if needed. Chose rather to believe I would never need it again.

After 15 months of recovery, feeling more like myself but with less energy and more general fatigue. Adjusting however and still pushing myself to do more everyday. I try hard now not to think about having

Cancer still sits in the back of my mind daily.

As I tell my friends and family I only have/had cancer only on the days I see the oncologist for follow ups. 😉. It’s a mind trick I play on myself, but it helps. Wishing you years of cancer-free wellness. Best to you this coming year and keep us informed.

[ElayneZ in reply to Hidden]

Thank you for sharing! I’ve been concerned about days with less energy and general fatigue since chemo ended so I appreciate reading it’s part of the recovery process. Continued good health and the very best to you! Blessings!

[LittleSan]

I've recurred (am now 7 1/2 years post diagnosis) but my mum never recurred and died 20 years later of an unrelated disease. My advice would be to be aware of the symptoms of recurrence and report any that remain for over 2 weeks right back to your oncologist but live as though you aren't going to recurr. Don't let worrying about what you don't concretely know spoil a perfectly good day. Take care and enjoy your return to health.

Sandra x

[ElayneZ in reply to LittleSan]

Thank you Sandra. Appreciate your reply. Definitely will work on all positive mantras. Blessings!!