Worried about mum ❤

[Mitch68]

My mum is 72 years old & was diagnosed with Stage 3c high grade serous ovarian cancer in the summer last year which had spread to her liver, spleen and greater omentum. She underwent 6 rounds of chemotherapy (Carbo/Taxol) with her final one in Jan this year. She was deemed to be too high risk for debulking surgery.

Her CA125 levels on diagnosis were just shy of 9000, in January were 800, April 625 but then at her bimonthly appointment last week had risen to 2500.

I am confused as she says she does not feel particularly unwell and I'm worried that she may be underplaying things although she insists she's not. Oncologist did say she was looking "decidedly better than I was expecting you to ".

Anyone had similar increases in such a short space of time?

Michelle

[Lyndy]

Hi Michelle

Pleased to hear your Mum feels ok just now. It is an odd disease....doesn’t play by the rules! I was clear after first line and surgery, now beginning to recur but I feel better atm than I have since diagnosis!

Your Mums ca125 level probably means some active disease somewhere so in the near future she may be facing more chemo.

As I am well but also facing more treatment I decided to use the opportunity to get a second opinion...which was very informative. You could suggest this option? In the end though it is her call....she may want to enjoy feeling well for now. All the best to you both xx

[lorraine71-Australia]

Hi Michelle, As Lyndy said this is a very odd disease, I've had 6 different chemo treatment in just over 3 years , in between my 125 jumped to 1600 in about 6 weeks my oncologist got it down to 57 with Carbo/Caelyx.

I think a second opinion is a good idea I've had 2 and found it helpful, I still stayed with my original oncologist and she was ok with it and we discussed the options together.

As for feeling well when Ive been off chemo I've feel ok it's only that my 125 goes up so my oncologist puts me back on chemo it might be that mum will need to have treatment there are options..take care Lorraine xx

[Cropcrop]

Hi Michelle,

OC is a bizarre disease, it can be symptomatic but that’s not always the case.

Your mums CA125 is changing for some reason, hopefully it’s not the cancer, infections can sometimes cause the reading to rise and stress certainly doesn’t help it.

Did her doctor not discuss the rise in the levels with her when the blood test was done, it certainly should have been? I think it would be a good idea to have a scan to see if anything is going on and if there is it can be dealt with speedily.

Take care of both of you ❤️Xx Jane

[BeeWild]

Hi Michelle your mum and I are at exactly the same points in our journeys! I too finished first line carbo and taxol in January and my Ca125 went from 6000+ to 18! However at my 3 monthly check Ca125 up to 95 and by mid May 1900 so had a CT scan which showed the beast is stirring again! I was and still am feeling fine and well still walking every day etc so no real symptoms either x

I am back on treatment now of weekly taxol but just had today’s cancelled (No 4 of 18) as I have d & v 😪 I’m gutted and worried about chemo being cancelled but doc would rather be cautious than make me more ill!

You’re mum will no doubt have a scan and then a treatment plan x

[Biscuitqueen in reply to BeeWild]

Hope that you feel better soon! It's better for you to rest and look after yourself and come back fighting for Taxol next week

[Biscuitqueen]

Both yours and my mum are in a similar position, her ca is rocketing but she feels relatively well. I agree with others, get a second opinion just to get more answers and settle your mind. Doctors go on symptoms and scans, rather than the CA reading,. So if she is feeling well, that's a great thing sending a big hug to you