Ive had some good news is that ive shown a good response to 1st line chemo and my diaphragm tumour has shrunk to 1cm (after 4 rounds) from 3 cm after 2. Theyve put me forward at UCLH for the Athena trial, with Rucaparib and Olaparib as a maintenance trial. Its blind so theres a 10% chance you only get a placebo but obviously a good chance of getting something!
Prof Ledermann said the diaphragm tumour may not all go but he’s hopeful it will, Im worried going into a trial with some disease but I guess that’s what I have to deal with. They may offer surgery but its unlikely. I wondered if anyone has had any evidence of disease after chemo and what they have done? My CA125 is 9 so that’s good also. My CNS said that tumours don’t grow as fast after chemo and they can be dormant, has anyone heard of this? In a good way im getting as much monitoring as possible with UCLH.
If anyone else has any experience of Athena it would be great to know
Thanks
Nikki
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NIKKibailie
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My tumours remained stable on all scans for the past year. I last had chemo October 2017. I then decided to let my body have a go at fighting it. There has been no change in their size but I do have pain relief regime. NED is a broad description as it covers no new disease, no active disease. It’s also about visible to the human eye so microscopic cells can’t be seen. Dormant and stable are a similar state.
One thing I have learned since stopping treatment is how good your body is at passing on the message that something isn’t right. So I enjoy the days when it all feels good. Because there is residual disease doesn’t mean your quality of life will be affected especially if it’s sleeping
I have just finished frontline and have an enlarged pelvic lymph node that a PET scan showed is cancer. All the cancer I had after surgery is gone. The dr who was treating me thinks a PARP inhibitor is the way to go. I’m not BRCA but just had a test that showed positive for homologous repair deficiency plus I have PALB2 which is connected to BRCA. However since I just moved to Massachusetts I am going to my new dr at Dana Farber on Tuesday and will see what she says. I would prefer surgery or radiation if it’s just the one lymph node but they don’t seem to be an option. The idea of starting chemo again when I haven’t recovered from frontline just seems impossible to me.
I think my questions to the consultant would be if i dont join the trial what treatment is on offer? If the answer is nothing then for me its a bit of a no brainer as nothing would be the same as placebo arm anyway. If however you can access parp inhibitors anyway then you need to read up a bit more and make an informed choice.
I did a trial (how my chemo was given) in 2014 as i felt i had nothing to lose and possible gains, i got the arm that gave weekly chemo which is now one of the treament options for recurrence. My thoughts were (as long as it did me no harm) if i cant make a difference for me maybe I can for others later down the line.
It looks like london is the only uk base for this trial but it is worldwide so good luck in your choice. And you are right the follow up on trials is top notch i am still followed up from mine
Also forgot to say i have 2 spots on my liver that were found after chemo and thought to be residual disease, they are still there and never changed despite recurrence in the bowel last year, so yes people do have dormant lesions.
And such good advice. I really appreciate you spending the time to respond to me. Sending love and healthy wishes! Last chemo today so a milestone at least x
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