Panic!

[Frenchhouse3]

Please can anyone give me some advice? I’m very anxious and panicky at the moment. I started Olaparib on January 3rd with a CA125 of 18, ( I’m BRCA negative but my tumour was BRCA2 positive). it was stable for the first month, then rose to 24 and today was 30. My general blood tests were a little raised too. I haven’t been feeling 100% over the last month or so and may possibly have had mild Covid ( an intermittent cough, borderline temperature and very tired.) My husband felt the same.

After my initial first line treatment, my abdomen was all clear though there were two very slightly raised lymph nodes showing on my scan My Consultant didn’t think they were cancerous but couldn’t be sure. (December 3rd 2019).

I’m so afraid at the moment, if anyone has experienced something similar, please could you let me know.

Many thanks

Denise xxx

[delia2]

Hi. I haven't experienced this because my CA 125 isn't really a marker but I wanted to say try not to panic yet. Will you be having a scan any time soon? That is still within normal range and from what everyone says it's when the numbers double in a month that you really need to worry. If you've been sick that could have raised the numbers. But tell your doctor or nurse that you're panicking and see what they say. I'm sending virtual hugs.

[Frenchhouse3 in reply to delia2]

Thank you so much Delia for your comforting words, they have given me a bit more hope now. Fingers crossed.

Love Denise xxxxx

[Lyndy]

Yes, being ill with any infection can raise your markers... so definitely give it more time before panic if possible. My lymph nodes show up on scans but still no recurrence.... so take heart try not to worry.... there’s always a margin of error in markers xx

[Frenchhouse3 in reply to Lyndy]

Thank you Lyndy, that is a huge relief to know. I don’t know of anyone else who have lymph nodes showing, so that makes me feel more hopeful too.

Thank you so much

Denise xxxxx

[Maxjor]

What I was told is its the trend, not the numbers. If the trend is that it continues to go up for three or more readings, it is most likely a recurrence but if it fluctuates, it could be inflammation or some other cause. For me, when on Olaparib, my ca125 started to increase by 2's for a few months then started to double and when it tripled, we did a scan and found a recurrence. My oncologist said it kept things slow-going so he wanted me to stay on it as long as possible and it was about five more months after it started rising before I had to stop and go back to chemo. But watch because it could be down next reading and then you will know it was something else. Worst case--you have time to stay on it and consider future options (and not be treated during Covid). oxoxo

[Frenchhouse3]

Thank you so much for your advice. I’ve just spoken with my consultant’s temp. stand in and she said the same, they’ll keep an eye on it over the next few weeks and if it continues to rise and go above 35, they’ll check it out. I’ve gone up 6 points on both occasions.

It’s good to know I could have more chemo if necessary.

Will you go back on Olaparib again do you think as it has slowed things down for you?

Wishing you all the very best with your current treatment and I hope you have a huge remission ( or remain completely clear).

Kindest regards

Denise xxxxx

[Maxjor in reply to Frenchhouse3]

Hi Denise. My oncologist said yes I could go on it again but it’s best after platinum chemo. I’m platinum refractory but I was told if I get to 12 months with platinum chemo it works again for some patients. That’s my hope then Olaparib again. Right now I’m on Taxol and Avastin and it’s going well. About to start cycle 6 a week from tomorrow. You’re so sweet. A huge remission would be lovely!!! I’m rooting for your numbers to go down next blood test!!! Oxox

[Frenchhouse3 in reply to Maxjor]

Hi there, I’m so chuffed for you that the Taxol and Avastin are working so well for you, that’s such great news. I hope you can then move onto the Platinum based chemo if you should need it ( hope fully the current combo will do the trick). It would be good to have the Olaparib as a back up too but I hope you won’t need it again.I read in your bio that you too had a bowel blockage and NG tube too. I had both as well before I even got as far as a biopsy and it was one of the most terrifying moments in my entire life. I still feel traumatised by it now, even though it was last May.

Let’s hope we both kick this diseases’s arse for good now.

I’ll let you know how I get on next month.

All the very best to you!

Denise xxxxx