CA125 rising already!

Hello all - My CNS nurse tells me that my CA125 has already risen since Friday. I am no wondering if instead of a parb should I ask to continue on Chemotherapy, until such time that my CA125 get to normal figures, currently 141, and then start a parb or clinical trial? not to sure of the standard protocol for treatment but am guessing its not written in stone? Your thoughts will be gratefully received. xx

[Seasun36-uk]

Hi Lyn,

Are they waiting for your bloods to improve? Eg. Haemoglobin, white cells, platelets.

I think (unfortunately) some, if not all, protocols are (sort of) written in stone (having worked in the NHS) but Consultants can overrule....

Hope you can get a decision soon! Keep us informed.

Linda xx

[Hidden in reply to Seasun36-uk]

Hello Linda - spot on! My Haemoglobin is 7 and my WBC only 2.5 so it is a game of wait and see and hope I begin to recover before I run out of time to qualify for the trial.....stress and anxiety time. x

[Welshandproud in reply to Hidden]

Sending stress busting vibes your way xxxx

[Gemimablackvelvet in reply to Hidden]

All the very best Lyn

Lots of love to you

Angela xx

[Lindaura]

You are in a tangled web, no doubt about it.

You only just finished second line, Carbo/Caelyx, and that did a pretty good job, but did not decimate the last nodules.

I am flummoxed that we can’t continue for another 2 months on this regime... to really get a clear response.

I was foolish myself, being BRCA positive, as I was anxious to get onto Niraparib, so I accepted the tiny nodules that were left after Caelyx, so could hop on the PARP train.

Turns out the PARPS are not the miracle drugs for all of us, even us BRCA positive ladies.

When your CA-125 is on the rise, I do not countenance “watch and wait”.

This disease is too sneaky to leave unchecked, as you have already experienced.

So, I would discuss options with your Oncologist and perhaps explore a different trial at a different research centre.

I agree that you have to do something.

BTW: every drug that you have failed on CAN be used again after having at least a six month rest from it. And many trials are exploring PARPS in combination with other drugs to make them more effective.

Best wishes and hugs,

Laura

[Hidden in reply to Lindaura]

Hi Laura - Thank you. Clinic tomorrow so lots to discuss, nice to hear from you, are you doing well on your trial? x

[Lindaura in reply to Hidden]

Hi,

I am kind of in limbo. Waiting for results of my last CT scan.

All has gone well, but weird CA-125 result last week has thrown me off.

Get a scan every 2 months, and the CA-125 test each month:

Started at only 143

Down to 87

Then 57

Then 39

Then 29 (hoorays!)

Suddenly 53.

I feel well, no visible sign of infection...hoping it’s a glitch.

My appointment is on Tuesday.

Good luck with clinic tomorrow.

Be strong!

Hugs,

Laura

[Hidden in reply to Lindaura]

CA125 is weird I think for all of us. My CNS says its only part of the diagnosis, and its the CT scan that matters, here's hoping your scan is all clear. Good luck x 🤞😍

[Gemimablackvelvet in reply to Lindaura]

Hello again Laura, nice to see/hear you again. My oncologist has sort of skipped the usual CT scan at the end of this last month on Carbo/Caelyx. His decision on Niraparib seems to be according to CA 125 and blood results. I may have misunderstood. After reading your reply to Lynn maybe I should question this. I cannot really question his opinion can I! My appointment with him is on Feb 20th. Confused 🤷‍♀️

My love to you and all the best.

Angela xx

[Lindaura in reply to Gemimablackvelvet]

Hi Angela,

It’s confusing for all of us.

The cancer marker, CA-125, has always been a good indicator for me. After all, it’s an enzyme emitted by active cancer.

For me, it doubles as even small nodules begin to grow larger.

And I believe In nipping any progressions in the bud, before sneaky cancer cell invade any other parts of me.

In the trial I am on, and probably all trials, the researches also use finite measurements of any lesions or nodules, to know exactly what growth or shrinkage is taking place.

Today, I go back to London and find this out.

Naturally, I am apprehensive, but I promise to post after this visit!

Hope you are doing better and all is under control.

This is definitely a battle with lots of stages and strategies.

Keep up the fight!

Hugs, 🥰

Laura

[Gemimablackvelvet in reply to Lindaura]

Dear Laura, I really hope things went well for you today.

Look forward to hearing from you with some good news.

My love to you.

Angela xx