Tamoxifen

[Litchick]

Hi , hoping everyone is managing to keep as well as they can amid this turmoil. My sympathy to those who have had treatment or ops delayed because of it- it’s a worrying time but thank goodness for this wonderful forum where we can find support and advice.

Just in case anyone is in a similar position I wanted to give an up-date on my experience on Tamoxifen. I have been taking it for two months and tolerating it well for 1 st reoccurrence. So in a telephone consultation with my oncologist she has said my CA125 has risen to 86 from 75 over two months and she feels looking at the previous rise where it went from 32 to 75 in 2 months this is a sign it is slowing up the disease or even holding it at bay. Compared to some my numbers appear low but I understand these are unique to each of us at diagnosis when I had stage 3 high grade in both ovaries, omentum and peritoneum my number was only 186.

She has booked me in for another scan in 4 weeks to check visual evidence. I am feeling cautiously relieved and wanted to offer this as encouragement to others.

As usual apologies for the long post.

Best wishes to all

Jan. xx

[Cropcrop]

Hi Jan, I’m pleased your oncologist thinks the disease is being held steady. I imagine the number rise was a cause for concern but if she’s happy then I’d be happy too.

My CA125 reading was never really high either so not really a good indicator for me. I was certainly symptomatic though. I was stage 1c3 clear cell. I think the numbers are an indicator used alongside other factors in the whole scheme of things with our disease.

I hope your scan confirms her thoughts and hopefully possibly show some reduction. Do let us know once you have the results.

Take care at this troublesome time lovely ❤️Xx a Jane

[Solange]

Hi Jan, I hope the Tamoxifen does help you, the longer you take it. I've been taking it since last June when my Ca125 had risen 1,139, very high for me as I too have usually had very low numbers. I was very reluctant to take it but didn't feel comfortable not taking my Onco's advice. To my surprise, my Ca125 has slowly come down a bit. It's now 432. It seems to have helped stabilise me and although two of my many tumours have grown a bit, the others have stayed the same. I'm due a CT Scan early May to see how things are doing. Whether I'll get the Scan with this Coronavirus is another matter..........

Best wishes, Solange 😊Xx

[Litchick in reply to Solange]

Hi Solange and thank you for your encouraging reply about your experience of Tamoxifen. I have just read your profile and am inspired by your fortitude along your journey with OC . You must have had some very tough times. The uncertainty of waiting for scans is another worry and I hope and pray that you get yours. My oncologist assured me mine will happen at the end of April as the trust have moved all cancer services to one hospital well away from the other where Covid patients are.

Meanwhile I hope you stay as well as you can.

Thanks again

Jan. xx

[Litchick]

Hiya Jane and thank you for your response. This numbers variance just shows how the cancers behave differently and how unique we all are. It must be so frustrating for the scientists and medics trying to predict the outcomes of treatments too! Thank goodness for CT and other scans to keep an eye on the blighter.

Because I am so well at the moment sometimes just for a little time I forget about it.

So I’m counting my blessings and hoping to avoid the C bug. Hope you do too and keep on keeping well. Xx