CA125 results high again: Hi I haven’t been on... - My Ovacome

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CA125 results high again

LittleMissMerit profile image
11 Replies

Hi I haven’t been on here for a while. But you ladies were so supportive last time that I knew I could come back and ask. My Mum was diagnosed with OC last year. Following chemo and hysterectomy in September she was recovering well, her latest test results for the CA125 have come back higher. Not 3000 as it was but in the 100’s. Can anyone shed light or any experience on this. She is going for a scan on Thursday, but an idea of what may follow will be helpful. The cancer had gone near her bowel and liver but chemo seemed to do the trick. I’m gutted that she never told me and my sister when she had known for weeks because... and I quote “you have been through enough”. (Like it was us that had undergone the whole thing instead of her!) I would be grateful if you could shed any light.

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LittleMissMerit
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11 Replies
Katmal-UK profile image
Katmal-UK

Im sorry to hear your mum's CA125 has risen. Do you know when her last chemo was and what stage she is? Is she high or low grade? As to your mum keeping information from you I can relate, you are her child and she doesnt want to worry you. Its difficult to explain but as a mum we want to shield our children. She knows you are there for her. Big hug to you all xx Kathy xx

LittleMissMerit profile image
LittleMissMerit in reply to Katmal-UK

Thanks for replying. I think it was stage 3. That’s all I know.

Katmal-UK profile image
Katmal-UK in reply to LittleMissMerit

Do you know when she had last chemo ?

LittleMissMerit profile image
LittleMissMerit in reply to Katmal-UK

I’m sure it was mid October

Katmal-UK profile image
Katmal-UK in reply to LittleMissMerit

That may be good because usually if arecurrence is within 6 months that would indicate the the platinum chemo hasnt worked. Having said that if yr mum does have a recurrence there are other chemos if she is platinum resistant. Im stage 3 and stil here in my 13th year albeit with 2 recurrences and currently on a third trial drug. If yr mum does have a recurrence she will prob have more chemo and it might be worth asking if there is a trial she can go on, if thats something she might consider. xx

LittleMissMerit profile image
LittleMissMerit in reply to Katmal-UK

She was on Carbo taxol at first, but one made her extremely poorly, and it continued just with the one drug. Apparently her consultant isn’t overly worried but we are all concerned. I’m not sure if that has any effect on the whole thing.

Thank you so much for sharing your experiences with me, especially when you must have been through so much.

Katmal-UK profile image
Katmal-UK in reply to LittleMissMerit

Please keep us up to date with how your mum gets on, best wishes to her xx

Litchick profile image
Litchick

I’m sorry to hear your mums Ca125 has risen, the scan will tell her team exactly what is happening and be reassured from that they will make a plan. I have just started chemo for a first reoccurrence and to be honest although I shared the fact that my cancer had returned on here 3 months ago I did not tell my sons and wider family. Like your mum trying to protect you I just wanted to wait and not give them any more worry . I was put on Tamoxifen but it only helped a few weeks and then my symptoms made treatment necessary so I had to tell them. They were sad for me but once again are like you being amazingly supportive.

So, hoping Thursday brings good news and

meanwhile sending love and strength to you all.

Jan. xx

Lizchips profile image
Lizchips

She may have something small returning they may give her a maintenance chemo. Or even put her back on chemo. None of us really can say. But probably someone should go to appt with her. You can ask questions. Get the right answer. Best wishes, Liz

LittleMissMerit profile image
LittleMissMerit in reply to Lizchips

Those are my suspicions right now. She suffered so badly with the chemo last time, including two hospital admissions during Chemo, opiate drugs (which she told them would make her sick) did make her so violently sick, she couldn’t keep food down at all. We are all dreading a repeat of last time. She was left in A&E vomiting violently in a wheel chair, whilst the left hand worked out what the right hand was doing. (Two health trusts who don’t communicate well) That’s another story. Sorry some of it is all coming back. Whilst my sister and Dad put their lives on hold to physically help Mum out. I was at the end of a phone trying to work out what the hell was going on, updating the two health trusts because they weren’t communicating. It was all a bit of a nightmare for Mum and the whole family.

On the bright side weight watchers never gained a new member that year. The opiates did the trick on that score.

LittleMissMerit profile image
LittleMissMerit

Things are a little clearer now, though we still don’t know the cause. It appears a routine blood test in February indicated a rise, Drs weren’t worried but said they’d do another in a month or so and booked a date for a scan in March, mainly for my Mums piece of mind. Second test higher still, but scan cancelled because of Covid 19. Drs weren’t aware of this until her consultant called after the peak of the Virus and then another blood test was done (she doesn’t know these results) and a ct scan booked for Thursday just gone (my Dad took her). So it’s just a waiting game right now.

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