Hi lovely ladies not been on here for quite a while! Was so ill after my debulking surgery Stage 3 c last July and had a very rocky time! Thought I was going to lose the battle a few times! Long story short had 6 rounds of carbo and taxol which ended in January this year, made me so much better and my Ca125 went from 6000 to 18 after treatment ended! Was told I had a few shadows remaining on my CT at the end of Jan but inactive and a very good prognosis! My family and I celebrated as you can imagine! Yesterday had 3 month follow up which was positive even talking about stoma reversal , then was told today via phone my Ca125 is up to 95 will need a CT scan again to see what’s going on! I feel so well I’m in shock and so scared! Dr did say over the phone it could be something other than a recurrence but need the scan to see so now I’m waiting for a date for scan and then waiting for results again!
Can anyone tell me if they had this happen and what my further treatment may be? I was told yesterday I’m BRCA negative my head is in overdrive and my kids are devastated we all thought I was doing so well! I no longer trust my body!
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BeeWild
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Hi, What a good result you had125 was 6000 down to 18, as your Dr said it can be some thing other then a recurrence I'm sure your doctor will have a plain if needed, some times they will repeat the treatment you had before as it was so successful, I had carbo/ taxol with my first recurrence and as I said you had good results before.
Hope it turns out to be ok keep in touch..take care Lorraine xx
Thanks Lorraine x I have done the dr google search (I know you shouldn’t) and it appears from what I’ve read if recurrence is so soon then you’re classed as platinum resistant so they won’t use it again? How long after first treatment ended until your recurrence? How you doing now?
I know I was so pleased with my response to my chemo but it’s been short lived it appears xx
Hi. I've been on this round about for near 4 years I'm about to start my 6 treatment Carbo /Caelyx, first treatment was Carbo/ Taxol and I had just under 5months before recurrence, my oncologist still gave me Carbo/Taxol this lasted only about 3 months and I was told platinum resistance, then had taxol'
My next treatment no 4 was single caelyx this gave me good results no 5 was Carbo/ Caelyx, I asked my oncologist why carboplatum if I'm platinum resistance but it worked, again good results in bring my 125 down.
I went off chemo to try a new trial drug but it was the hardest treatment of all and my 125 is going up and now new spot o my adrenal gland so next week I'm back on Carbo/Caelyx this seems to be the best treatment for me, as you know we are all so different and you did have that good result I've never got mine down lower then 57, I have had small break between treatments. I'm hoping all goes well for you ..Lorraine xx
Wow Lorraine you really have been through the mill! I just feel scared and yesterday felt sick all day! The next couple of weeks waiting for my scan and then the results are going to be hard!
Hearing that you have had so many rounds of treatment gives me hope I thought they would give up on me xx
Keep on being as strong as you are and I will keep my fingers toes and everything crossed that this time you beat this beast into submission xx
Hi, There are so many treatments and new trials your team can offer, defiantly not give up on you, it's normal you feeling the way you do but you will feel better when you know one way or another take care Lorraine xx
Hi , can’t give you any advise as I’m only beginning my journey on this terrible disease , just wanted to send you hugs and let you know I’m thinking of you.All the waiting is horrible .xx
You're probably being treated at the amazing Christie then. You're in good hands. I found the fear when I had a recurrence was one of the very worst times. I hope it's not a recurrence for you but if it is, your team will be 100% behind you and have a lot in their toolbox to treat us. I live near Manchester and happy to meet for a natter if you feel it would help.
You have done really well and you feel well - so congratulations! We love the CA 125 when it's going down but the other way is another matter! The scan is just protocol for what's happened. I have had CA125 going up when I felt fine and there was no disease progression. I've also had it going up and there was. You don't know till it's done. I think it's important not to overthink all the 'what ifs' - in fact, at one stage when I was on Avastin I made the decision not to know my CA125 - this stopped it messing with my head and helped me live in a more relaxed way. Talking of Avastin, this 'maintenance drug' which keeps the cancer in check is one I'd be asking about if you haven't been recommended it - it's not like chemo. Has a few side effects of course, but you can live a normal life on it. It's a big learning curve living with oc and you have to find the ways that keep you as calm and happy as possible - good luck! Take each day at a time.
Definitely worth asking if you qualify for Avastin at any stage. You'll find lots about it on this site if you just put it in the search box. If you qualify, you get 18 lots via drip every 3 weeks (takes half an hour) so if it works you have a year on it. All the best. x
Hi I am stage 4 diagnosed in Nov started Taxol/Carbo with avastin in december for 6 rounds I am due scan next week my 125 were 1000 and only went to down to 185 they weren't concerned in the chemo ward I was very worried and the plan from the start was to keep me on avastin for 12 months in total I think that is the plan if the scan is ok, yes do ask about avastin I live in Ireland there is also parb inhibitor called niraparib I asked could I go on this as I am BrCA negative and this is used for similar patients but they said no avastin is more proven. hope you get good results positive thoughtsxx
The same happened to me. I went from 1250 to 35, NED, felt perfectly fine all the time. Three-month check up very good, phone call the next evening to say CA-125 up to 1209 and to come in for an urgent scan. In my case it was a recurrence in the lymph nodes. I went onto the Javelin 200 trial and subsequently weekly taxol.
It might not be a recurrence for you as the numbers are small and could be something else. Waiting to find out is difficult but you’re still the same person as you were the day before yesterday, you still feel well, there’s much to enjoy including the spring weather, if it’s not raining where you are. You’re right about platinum if you have recurred but there’s lots of other drugs and trials.
Oh wow thank you, I am just having a blind panic attack but you’re right nothing has changed in the way I feel and I need to calm down and take a breath x
This disease has turned me a bit neurotic! I’m glad there are other drugs and trials as I’m not ready to let this win!!
Hi I am going through same thing, ct scan showed irregularities and during my 3 monthly check up a 2.5cm was found on vaginal vault, then had a pet scan that has showed pelvic lymph nodes involvement, below diaphragm and vault.
I am having further surgery on Monday then adjuvant chemo, not sure what chemo yet as only had appointments during tests with gyne-onc.
I can understand your fear & shock. Five years ago, I had surgery to deal with a recurrence, then was told 3 months later the beast was back again. I hope that for you it is a false alarm, & there is another explanation. But if it is back, there are a number of treatments out there. For me, as my cancer is hormone receptive, one option is hormone treatment, one tablet a day, which I've found easier than chemo, but it isn't for everyone. Di
Hi Beewild. Hm maybe there won't be any need for action just yet. Depending on your specific medical situation, current health status (no symptoms), scan result and initial cell type of tumours, it could be something you just keep watching for a good while before taking any action.
I've got borderline turned low grade serous OC, and we were just keeping an eye on my CA125 (which was 4500 at the start, and kept hovering around 100 after surgery) and occasional scans for two and a half years . Only when there was an indication of recurrence in lymph nodes per PET/CT scan, and a sharp CA125 rise to 160, did we take action. But for over 2 years I just lead a pretty normal life, including a full time job, a cross-channel move etc.
I keep saying that sometimes, we need nerves of steel with this disease... and ignore it for the time being, if that is also the medical advice.
Fingers crossed for you that the CA125 rise means nothing, to start with. Or that there is at least no need for immediate treatment. Let us know what happens and try to keep the worrying from taking over your life (not that I'm very good at that myself.. but hey.. something to aspire to ).
I’m in a very similar boat though it’s 14 months since I finished chemotherapy - my CA125 has gone up slightly and I pressed for a scan as having endometriosis and two hernias and a stoma it’s hard to know what ache is down to them and what might signal recurrence - my head is in overdrive - indeed it has driven me to this site as I have never googled anything about ovarian cancer since diagnosis till now - the doom and gloom and head tilts from everyone from surgeon to oncologist enough to tell me to avoid researching - of course now I have and can’t put Pandora and her hideous stats back in the box - I had my scan yesterday but now long wait for clinic - I’m trying to keep up with my mindfulness and getting out every day to do something nice for myself - whatever happens we are still alive today so need to make the best of it - thinking of you x
Hi BeeWild. So sorry you had such a rough time with previous cancer bout. Did you have stage3c ovarian cancer or ppc? Your ca125 of 18 at the end of treatment is great.
I am going through chemo stage 4 since its a recurrence and I, too, was surprised that the cancer was back as I was feeling great. It was a shock but I'm dealing with it and you will too.
You're a tough gal as all of us on this site are. When we're confused or scared you can always come and talk here. Always makes me feel better I'm not alone and some signs or symptoms can be explained by these wonderful ladies. They always, always, make me feel better and stronger. We are warriors.
Thank you xx I have stage 3C epithelial ovarian cancer x just scared that only 3 1/2 months after chemo my Ca 125 has risen to 95! Scan next week and then like you say I’ll deal with whatever the outcome is and yes this forum is so good at giving us support and strength x we are all warriors in this war xx
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6 month post chemo scan all clear . 
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