Catch-22 (What to do?)

[Maxjor]

Hello Dear Ladies (and gents),

I wrote recently that my ca125 is on the rise. Last test, it went from 15 to 73. I am on a clinical trial (PARP --Veliparib vs Placebo) after front line, and 7 months later, this rise. So pretty sure I am not on it. I called ahead of my appointments this week to say I am pretty sure they will tell me to get a CT scan to confirm what is going on. I told them I wanted to get off the trial because obviously not working, and they said I can't get off the trial till the trial says so (protocol) and they can't say so until they get confirmation from the scan I am recurring. BUT they said the protocol for the trial won't allow me to have the scan so soon after the last one (2 months ago--when NED) and I need to keep taking the pills and wait.

In my mind, the cancer will spread because I am waiting (about 3 more weeks) and the anxiety? Don't even get me started.

I don't know if this is because they believe it may not be a recurrence, or I might be on the real medication or what, but I cannot imagine my doctors telling me to wait three weeks if this is a recurrence. Anyone dealt with this or had to wait for a scan when you really really didn't want to wait (not that I want or like a scan but this is what the medical team is going to be waiting for to treat me!) Another three weeks feels like an eternity.

[Katmal-UK]

Hi. Firstly I have to say that I have been on three trials (currently on my third) and I have always been told that I can stop at any time. The protocol is just the procedure/timescale they use. They cannot force you to stay on something. If you look at the paperwork you would have signed it should say that you can stop at anytime. I'm staggered anyone can suggest you can't come off a trial. Maybe worth speaking to Patient Liaison? I do hope you get this sorted, you definitely don't need the stress! xx Kathy xx

[Maxjor in reply to Katmal-UK]

Thanks Katmal. I did sign that I can come off anytime. I am wondering if my doctors will suggest that if they want the scan sooner but it was my oncologist's nurse that told me this (waiting for the scan), and they know my rising numbers. Maybe they can't say it on the phone? Not sure but yes, I will ask about electing to do that for an earlier scan. I am concerned if I elect to come off they may not want to offer me other trials (a blemish as you will) but its my life!!!

[Katmal-UK in reply to Maxjor]

It is indeed your life and you elected to go on a trial which you feel isn't working for you, I'm surprised to be honest they haven't suggested stopping it if your CA125 has risen. Mine rose from 7 to 65 and I was taken off the trial I was on, scanned and started chemo within a week (my choice, I can't stand waiting around doing nothing!). I do hope you get this resolved to your satisfaction xx

[Cropcrop]

Hi Maxjor, I did a trial and was told when I signed up for it that I could come off it at any point, it seems harsh to say you can't come off the trial, what if you had had an adverse reaction to it? I'm sure they wouldn't insist you continue the treatment under those conditions so if you don't believe it's working and your blood tests seem to support that then I really wouldn't have thought it ethical to insist you continue?

I do understand the scan issue a little, they don't like us having too many scans due to exposure to radiation but you have contraindications to the treatments validity so there's just evidence for a re scan in my humble opinion.

They are also giving you mixed messages, You need a scan to confirm if there's an issue which would release you from the trial but the trial stops you having a scan?? It's got to be one way or the other, the criteria is contrary or the person running the trial at your centre doesn't understand the conditions properly.

I'd check the paperwork you signed for the trial to fully check out your options here before moving forward and there's always PALS.

Take lots of care and let us know how you get on with this ❤️Xx Jane

[Maxjor in reply to Cropcrop]

Thank you for this Jane. My paperwork says--and they made sure I knew--that I could come off it anytime. So my questions to both doctors I am seeing this week is why are they not suggesting I come off? My guess is the answer will be they do not have confirmation I am recurring. So then my question will be what else could the (significant) rise in numbers be? If its something else, would I still stay on the trial? I am hoping to get some clear answers today and Friday (today surgeon and Friday oncologist) about that. I will come off if it gives me a scan earlier but you are right, I had my last one less than 3 months ago, NED! Thank you for your support. It means to much to be able to discuss and get your--and other input.

ooxox

[Lily-Anne]

I think you should do what is right for you. They're interested in the figures but ethically they have to let you withdraw if you want to. I would absolutely stop the trial drugs and speak to my oncologist. Cancer is very time dependent.

Good luck

LA xx

[January-2016-UK]

You can leave a clinical trial whenever you decide you want to and you do not even have to give a reason. It may be that you are having the trial drug but that it is not working for you, or that you having the placebo. You would have a CT scan in another three weeks if you remain on the trial so ask your oncologist if it weren't for the trial, would they be suggesting a CT scan now, in view of the rise in your CA-125 result, or would they be suggesting monitoring, especially if you are symptom free. This can often be the case in which case you may as well be monitored whilst on the trial as such monitoring is often more intensive.

I doubt your team would see it as a blemish on your record if you wanted to leave. Oncologists suggest themselves that participants come off of a trial whenever they feel it is not in the patient's best interests to continue.

Whatever the result waiting for scans and waiting for results are the most anxious of times, and it's not an easy time for you. Wishing you all the best!

[Teresa_K]

Just a thought but as the marker can be influenced by other things going on in our bodies, might they be thinking this is a "blip"? Wait till next reading before jumping ship?

Good luck

Tx

[Grace-53]

You can come off the trial any time you want and don't worry about future possible trials. However, I am not sure if it is recommended to have CT scans so often (2months after the previous one). I think in the scheme of things one month doesn't matter, but I understand the anxiety and stress. Maybe time for another talk with your care team. All the best.