My CA125 continues to rise at an alarming rate, currently 850! My first recurrence is confirmed. My treatment starts tomorrow, carbo/caelyx. My breathlessness has increased and my bloating is causing my clothes to be very tight. I was dreading more chemo but am now welcoming its start. I am devastated having to accept that I am now not curable, however a lady I met in clinic on Monday lifted my spirits as she has been on various treatments including clinical trials for the last 20 years! There is hope for all of us, if I make another 20 years I will be eternally grateful, and am prepared to do whatever it takes to reach that goal. Lets all stay positive and continue to support each other and give this blasted disease a run for its money! Love to you all. xxx
CA125 continues to rise...........: My CA12... - My Ovacome
CA125 continues to rise...........
Wishing you all the best best with your treatment and yes definitely striving for 20! 😁👍
Thank you x
Hope the new chemo does its job for you without too many side effects - 20 yrs is amazing and certainly something to aim for - we all need hope and a goal x
Thank you 😀
Sorry to hear you are going through a recurrence.
Always good to hear of ladies who go on for years...... I thought I was doing well being in my 12th year! See, these are the ladies you don't hear about, the ones who defy the odds but they are out there getting on with life! Hope your treatment goes well. Big Hug xx Kathy xx
Thank you 😀
Wishing you all the best with your treatment, I have had 4 recurrences and was told that it was incurable. I was diagnosed in 2012 at the age of 65, u am currently on a parp inhibitor coming up to 12 months!
Thank you 😀
Are you BRCA+? thanks x
No I am braca negative
All the best for your new treatment tomorrow Lyn. I'll be heading to the hospital for a CT scan so will be sending you good vibes from there! xx
Thank you 😀 Good Luck with your scan. x
All the best for your new treatment Lyn.
I think we always hope we’ll NOT have that recurrence.
I have ‘nodules’, am on watch & wait, so know how up & down this all is.
Keep strong & let that chemo do it’s job, starting tomorrow.
Linda x
Thank you 😀
Your recurrence symptoms sound a lot like mine were back in Feb/March - I too was quite happy to get going with my treatment as a result.
Carbo/Caelyx worked well for me with nothing but a little 'free fluid' (??) to see on the scan and my CA125 right back down in normal range 5 months on. Best of luck to you x
Thank you 😀 Long may your low CA125 continue.
Hi Lyn, I too experienced this and struggled with the "attractive stockings" for my expanding legs. I was given a magnesium flush which lasted 8 hours and whether it was psychological or not felt better and less breathless afterwards. I have the same type of tumour as you which was diagnosed as irritable bowel for two years! I am receiving help from the psychologist at Maggies to cope with my nightmares and fears re being incurable and wonder if you have that facility near you? Anyway 20 years is great and we could be around even longer so yes lets be positive and fight back, I hope things start to improve for you with the new regime and will be thinking of you.
Lots of hugs
Pat xx
Thank you 😀
Good luck with the treatment. I’m glad your spirits have lifted about the chemo and I hope you don’t have too bad a time with side effects. Hopefully you’ll have a very long remission after!
Thank you 😀
Thank you 🙂
Wishing you all the best for your new treatment and hope you have minimal side effects, before you know it you’ll be back to a very very long remission.
20 years amazing 💜 gives us all hope
Love and best wishes Kim x
Thank you 😀 fingers crossed.
Best wishes that your next treatment is very successful. Cheering you on every step of the way! 💕 Gina
Thank you 😀
Good luck, loving our ‘target’!! I found it ok, get some E45 for the (possible) dry skin, and stuff to 💩!! The first week was a bit wiped out but the next 3 were great 😊 x
Thank you 😊
Hi Lyn,
Sorry to hear your recurrence has been confirmed but hoping this next lot of chemo knocks the blighters back for many many years 💪 I’ve heard Caylex is quite doable and that you don’t lose your hair, juts thinning a bit in some cases. There are loads of positive and uplifting stories of ladies living their lives with this disease and it’s now treated as a chronic illness. I’m sure you’ll be back to full strength and on a wonderful holiday somewhere exotic again very soon 💕 sending hugs to you,
Liz Xx
Thank you 😊 got my eye on cruise to Russia next year 🤞
Blimy Lyn - it says something when we look forward to chemo and more so to the next 20 years of it. As we say in my family- I take my hat off to you. Go with that attitude and take all our thoughts with you.
Best wishes
Fay
Thank you 😀
Sending you best wishes for your treatment. With all the huge strides being made with new drugs now, who knows 20 years may just be the start! Love Jo 🌺🌼🌸🌻🌹
Thank you 😊
Good luck today and remember it'll help your symptoms and will hopefully put you in remission again xx
Thank you 😊
Good luck with carbo/caelyx. I am on this regime with not too many side effects.
Thank you 😊
Ah Lynn it's so gutting to be in recurrence isn't it? As you say though, they're doing great things and new stuff is on the horizon.
I started a trial in April for my 4th line with a ca125 of over 10,000, ascites, breathlessness and platinum resistant. Coming to the end of the weekly Taxol now. Am exhausted but symptom free and with my ca125 down into the hundreds.
Keep on keeping on. Hope all goes well for you. 💐😘
Thank you 😊 - will you start a parb to reduce your CA125 even further?
Yes, if I have further growth. I will continue with the daily cedinarib but if I start to recur they will combine it with Olaparib. Apparently the combo is proving really successful in BRCA -ve people. I had Niraparib earlier this year but didn't have any success with it. Xx
Hope all went well Lyn with treatment. Keep your spirits up (we all know how hard that is), think of this cancer as more of a chronic disease rather than incurable. How good was it to meet that lady going 20 years and still! We all need to hear these stories. Sending love, Ruth xx
Great to hear of someone still here after 20 years. Makes my 11 years feel like quite a short time! Di
WOW 11 years is amazing as well! well done you. x
Good luck Lyn, we started our journey at the same time and I often think of you,. Russia will wait for you x
Thank you 😀
Yes l think of this as a chronic illness, convinced by my consultant! I too recurred after 9 months but we do what must be done Lyn. Good luck with the new regime and start to talk with your consultant about maintenance treatment. You need to do this sooner than later as there are hoops to jump through for the criteria's. You'll soon be packing for that trip to Russia. Sylvia X
Thank you Sylvia - The team have already mentioned Niraparib, I cant have Olaparib which is all over the news at the moment as I am not BRACA. I am at the Marsden and they are super hot on parbs and trials. Have always thought I am in excellent hands. x
I too am not a BRCA mutation carrier but the ICON9 trial which l just commenced is attempting to see if this will help us ladies. Fingers crossed. Hoping you get a good response to next chemo option. X
Thank you - Good Luck with the ICON9 fingers crossed x
Hi Lyn--so sorry you had it confirmed but I also did Carbo Caelyx for my 1st recurrence and found it the most tolerable of chemos and trials. My ca125 went down quite a bit after the first cycle and continued to do so back to remission. I believe your attitude is also great and that is a help getting through any treatment! Wishing you luck and few side effects and here here for the 20 year mark! oxoxxo Judy
LHi Lyn. I travelled your path last year, so fully understand how you are feeling. The overwhelming nature of hearing the words you cannot be cured cannot be described. I was told two weeks prior to Christmas, and my husband and I kept it to ourselves until January, so as not to spoil Christmas for everyone. . Unlike you I had not picked up this fact when I actually had my first recurrence in July last year. I thought I still had a chance, especially when I responded to second line treatment so well, and so quickly. Talk about having both fingers in your ears. Anyway, I am now on the way to my second recurrence. CA125 rising steadily again, tumours increasing in size, however at this stage no symptoms. I am now on 6 weekly review to catch things before I reach tipping point. I intend to delay treatment as long as possible. Good to see you are platinum tolerant still, as apparently I still am. Best of luck for your treatment. Kind Regards Therese
Thank you Therese - I believe where there is life there is hope. Good Luck 💗
Sorry about the recurrence, Lyn. That sucks.
Luckily there are loads of treatments available. Hope you find the Caelyx/Carbo combo manageable and any tumour activity will cease. I've never had Caelyx before, but seem to remember someone saying it can take a while for the tumor marker to respond to it. xx. Maus
Thank You - Just not being on watch and wait anymore has lifted me, I understand the rationale behind waiting but it is so very hard. x
All the best with your new treatment plan I hope it eases your symptoms.
Ellsey xx
Thank you 😊
Hi Lyn, what stage overian cancer did you have? And how long was your remission?
I’m asking as I have just started chemo again, I was in remission.
Just can’t seem to get positive this time. I guess what you said, it just takes one person to turn your head around.
Yep, we have to thump this horrible thing on the head.
Hope chemo is kind to you. 🤗🤗💐🙏🏻
Hi - I was diagnosed stage 4 - after chemo and the op I was NED - but soon after my ca125 started to rise but because my scans were clear I was put on watch and wait. I managed 7 moths only of treatment free time don’t think I would call it a true remission. Maybe this time I will get longer 🤞
God Bless you lyn1987, you have the best attitude. Praying we all kick cancer.
Love to you! You go girl!
CA125 on the rise
Ca125
CA125 rise but clear PET/CT scan
CA125
