Rising ca125

[Casamimosa]

Hi, just feeling bit wobbly, I was diagnosed stage 4 serious OC March 2020, I've had chemo / ultra radical surgery and more chemo then on to olaparib. Had my telephone call to get next prescription of olaparib. Feeling well generally had magnesium problems but tablets and infusions sort that out in fact infusions may be stopped as magnesium up to good levels . my CA125 blood test has shown an increase up to 78. It was as low as 10 ...6monthsish ago. The doctor( one of the team not my consultant) mentioned a ct scan possibly being arranged. I'm feeling worried it's recurrence. Had a e-letter this afternoon to see oncologist in a month, usually been 8 weeks. should have been today but strikes probably caused it to go to telephone call. I'm feeling so well can't believe things might be going awry. Am I panicking??

[Lyndy2]

Hi Casamimosa

I have just gone through this process and had all the same thoughts you are having. I felt very down and gloomy to begin with but gradually I picked myself up. In my case it was a slow recurrence in 3 lymph nodes but this was only confirmed by CT scan.

There are other reasons for your ca125 to be up but of course they will look for cancer first.

If I could go back and give myself a talking to, I would say: don’t get ahead of yourself with the doom. Remember that there’s treatment available and if you are symptom free you have time to research different options.

I hope that yours turns out to be something else but if it’s a recurrence, there are lots of people here who can advise and support you xx

[Casamimosa in reply to Lyndy2]

Thanks so much

[AuntyOrange]

Stick your fingers in your ears so you can't hear the clock ticking and get busy living. 🥰

There's no "one answer fits all" just find what works for you & keep doing it. We're all in this together. xxx

[monkeytwo in reply to AuntyOrange]

Love this reply!xx😀

[Loorunner]

I very much sympathise with your feelings - been through a similar experience but have somehow managed to keep reasonably positive and focus on the fact I've been feeling fine. I also try and take a positive from having more frequent scans and appointments knowing the experts are keeping an eye on things. I've had rising ca125 for 7 months now, 8 weekly scans and there is now some activity there that needs treating but there are treatments there to hopefully kick it all into touch again. Wishing you the very best xxx

[Casamimosa]

Thanks everyone for your support, I feel very well generally so it was a bit of a shock to be told ca125 doubling since last appt. But as Ive done since all this started I'll pull up my big girl pants and get on with living and enjoying my family friends and hopefully some mega holidays. ❤ you all. Xx

[Itha]

Hi, I was diagnosed Oct 2020. HG, Serous, stage 4B, peritoneal, BRCA+. Chemo, debulking, chemo. Avastin and Lynparza.

Everything went well with CA125 consistently low and then it doubled from 11.5 Sept 2022 to 27.3 on 19 Oct and climbing slowly (28.10 then 30.5 in Nov)

My CT scan was clear on 13 Oct.

Petscan in Nov showed a small localised lesion. I was not surprised as I was expecting this after the CA125 doubled and kept climbing...and I had some typical OC symptoms again.

I was sure I was not going to be part of the recurrence stats. I felt good! Healthy, strong....

So, it was disappointing . I was however, always quite realistic about the stats and thus even though I was disappointed, it was not unexpected.

Where am I now? I had my second (optimal, thank goodness) debulking on 13 Jan. It was major invasive surgery with 10 days in hospital. I am recovering well but it will be a few more weeks before I am back to what I was before the surgery

I am starting chemo again, 6 cycles of carboplatin and gemzar on 2 March. I am not looking forward to this at all but I understand this is to make sure any microscopic disease is taken care of which will hopefully give me a long remission period (I am hoping for much longer than this last one). Since chemo is not an unknown, I am able to plan my work and projects far more deliberately (I have my own business). This in itself has been good - getting resources on board, handing over projects where I know I won't be able to deliver

In the meanwhile, I am working on my strength and health and immune system so I can handle the chemo when it starts in the best possible way

I hope this is useful for you?

My coping mechanism: a therapist, journalling and managing it all like a project. This way I feel far more in control

xx

Itha

[Casamimosa in reply to Itha]

Thank you for your support and advice. I am retired but I am putting my energies into helping with my grandson who is a joy. I'm presently having my regular magnesium infusion and the nurses here have been so supportive and caring. Onwards and upwards. Hope you are foing well

[Lovedogs41 in reply to Itha]

Excellent well thought out advice,thankyou x

[Lyndy2]

The only way I have found to ‘rise above’ is acceptance. It’s not easy to accept that this is our reality. As I was driving to the Marsden this morning to start the trial drug I watched other people going to work and briefly remembered what it felt like to worry about ordinary sh*t.

We don’t have that luxury but we can hold another truth which is that all life is finite and precious.

Most of the time I am happy, I always look for little pleasures.

Maybe we are the wise ones?

[Casamimosa in reply to Lyndy2]

You are probably right there. Ordinary s"""t doesn't really compare. Thanks for those words. I'm feeling more settled now, I'd just after nearly 3 long years got to feeling almost ordinary/normal then get this deal in the face.

[Casamimosa in reply to Casamimosa]

Meant slap in face

[AuntyOrange in reply to Lyndy2]

That is so so true wise Lyndy2. Acceptance! But yes, not in a defeatist way. Acceptance in that this is our "normal" and it's not going to stop us from living our best lives. I was bitten by a mosquito on the weekend & it came up like a tennis ball & hurt & itched like hell. First time in 71 years that I've ever had an allergic reaction to them but I refuse to worry about getting bitten again, it's not going to stop me spending time in the garden. I'm just going to accept that I'm now allergic to mosquito bites, treat it & get on with life. I know it's not the same as cancer but after a while (8 years) we become "desensitised" to our oc & it's just another mozzie bite to deal with. 😉

[AuntyOrange]

Hi Bobbylynn. Yes, your life will get back to some normality when you have recovered from your treatment. It's a lot easier to be flippant about this insidious disease when you aren't suffering from the effects of treatment, but I just want to communicate that there very often is light at the end of the tunnel and I hope that you get there soon. Hang in there. xxxxx