CT results

[coksd]

Hi I have stage 4 PPC Cancer and had ct results just told that it has shrunk the cancer down and plueral effusions resolved with chemotherapy, oncologist said surgery won't benefit me he wants to put me on avastin for a further 12 months he said he will come back and this will prolong my life a bit I asked about parb inhibitors he just cut me down and said no, I am not NED my CA125 was last 185 has anyone had anything else that worked for them??? I asked about IV vitamin C as there is a new doctor doing it in Limerick but onc wasn't impressed with this either he is the most negative doctor ever about everything, Also I asked him about the trial in Australia that one of the ladies posted here about having Avastin directly into the stomach he also said no. He also said I won't qualify for any clinical trials while on avastin so don't ask. I am very open minded and would be willing to try anything that would work, any suggestions welcome !!! thanks Clare xx

[Suzanne333]

Hi Clare. Maybe ask for a second opinion. Your consultant doesn’t sound very friendly.

Keep positive. Big hugs. Xxxxx

[coksd in reply to Suzanne333]

Thanks Suzanne, Think I will have to try a second opinion, Clare xx

[Tesla_7US]

Get a second opinion! What about niraparib, the newest PARP? It might stabilize your disease.

[coksd in reply to Tesla_7US]

Thanks Tesla I live in Ireland I had asked about this drug earlier in my treatment and was told it was on trial and I wasn't suitable for it as I was on avastin and the onc said he wouldn't take me off a proven drug to go a trial that could be placebo, i was very interested in Niraparib if I was getting the actual drug as I have no family history of breast or ovarian cancer he wouldn't put me forward for genetic testing, best regards Clare xx

[Tesla_7US in reply to coksd]

It works best for BRCA positive. You might not have germline BRCA, but you could have it somatically in our original tumor. Either BRCA source, niraparib has been proven to significantly delay time to progression. It was approved in US last year for all OVCA patients. Good luck!

[coksd in reply to Tesla_7US]

Thank you I think I need a different oncologist that is open minded and willing to help. Take care long may your positive treatment results last xx

[GoldenGourd]

Look into Ariel4 if you are BRACA positive. This is a parp inhibitor trial with Rucaparib which is designed as a treatment rather than a maintenance therapy. I had a CA125 of 586 at the start of Ariel4 and it has gone to 150. I agree about a second opinion. Good luck!!!

Netti xx

[coksd in reply to GoldenGourd]

Hi Netti was your CA125 586 after chemotherapy as my levels never went normal after chemotherapy, they won't test me for the gene as I have no family history of cancer. That is a great result you have from Ariel4 hope the rest of your treatment brings more positive results for you. Take care Clare xx

[Seasun36-uk]

You really need a better, more sympathetic & kind Consultant Coksd!

You are willing to try anything, so should he!

Wishing you the best 🌺🌸🌷

[thomas62]

Yes, your Consultant sounds really negative - go, like I did, for a second opinion. I didn't regret it one bit!

[IrishMollyO]

Hi Clare

Can you please private message me as we may have a lot in common and hopefully I can help

XXX💚💕

[111173]

I was diagnosed with stage 4 PPC in January 2014 after pleural biopsy. I have had chemo plus avastin for 3 doses, surgery to remove all visible cancer,, and another 3 round of chemo since then. I tried OCTOPUS trial but found it very toxic. I have just started a new trial in Oxford and am one of only 64 women with ovarian linked cancers in the world to try the early phase 2 trial. I am feeling well and baby sitting my grandchildren tonight.

I would advise a second opinion - your oncologist sound very negative. Surgery followed by chemo worked for me and you can always research trials after that. I don't believe that Avastin is all it's made out to be, it can cause perforated bowel which it did to me. Keep researching look up Royal Marsden and Oxford hospitals.

Lynne

[coksd in reply to 111173]

Thanks Lynne I have heard very positive comments of the Royal Marsden I live in Ireland and had treatment in the local Limerick hospital, I would travel over if I thought it would help or offer hope to me that is really good that you had successful surgery the onc said he wouldn't advise it as I have no tumor just a scattering of cells he pland to keep me on avastin for 36 weeks satrting in June I was on it from December to April with no effects but I know it can cause bowel problems and that is worrying thanks for your reply and I hope you keep well take care xx Clare