Does anyone know if you can you go into remission when you cannot have the debulking surgery..?
I have Stage iv inoperable high grade serious also on liver spleen peritoneal Tec. Had 8 chemo carboplatin and paclitaxol now as not suitable for op because of cancer on liver and they could not get/ me Ned on avastin for 18 treatments to give me b best quality of life.
I followed this path - 6 carbo/taxol, then 18 Avastin. After 6 carbo/taxol I was still declared inoperable but CA125 down to 20 and little disease to see - not exactly remission but very close to it. I am 3c. Avastin gave me a good year, able to reclaim my life and do what I wanted to do including a skiing trip. I am still here over three years later - have had four lines of treatment and a fifth has just been interrupted by a sepsis infection - not doing so well now but very grateful for the time Avastin gave me. Quality of life is hugely important. Hope the treatment gives you some happy times. x
Thank you so much harpist your road sounds the same as mine. I wish you well. You give me hope for more time than I originally expected when told no operation.
I hope you get lots of time. Initially I was disappointed not to have the surgery, but now I see I had a good quality of life and that some ladies who had the surgery passed before me.
You are so right quality of life is so important and I have that at present. Good luck and thank you
Hi lovely,
My special person after 3 Carbo/Taxol was classed inoperable, when they added the Avastin in the mix the chemo started working lovely and she then had the operation, unfortunately she has since reoccurred several times and is currently on chemo, so hopefully at your next scan you’ll be able to have the news they can operate xxx
That's very interesting Thank you. I see the consultant next month. I wish your special person all the best.
Hi there . I started a reply to you this morning and was interrupted so I somehow lost it. This is the shortened version.
Diagnosed in 2011 with inoperable Stage 3 c High grade SEROUS PPC.
CA 125 was 8000 . Alarming as 35 or under is normal. I was treated with Carboplatin/TaxoI every three weeks for six cycles and by the end bloods back to normal and I was pronounced NED which is short for No evidence Disease
I remained NED until 2016 when a scan revealed a recurrence in my peri Aortic lymph nodes which I was told was also inoperable. Normally if you are NED for six months or more the standard treatment is the exact same combination as your first one Carbo/ TaxoI and this was confirmed when I had a second opinion in a larger hospital.However when it came to treatment I was informed it would be Carbo only much to on my disappointment. I was told it was too toxic for me despite my neuropathy completely disappearing 5 years earlier. At end treatment scan showed it was stable which I gather is not quite NED !
Fast forward( or should I say slow! ) to just before Christmas 2017 when I was diagnosed with lobular breast cancer which was luckily a primary. Mastectomy and 28 rounds of Radiation followed which was this time last year. Scan showed all OK and off I went with my hormone blockers which are quite unpleasant.
However my gremlin was not finished with me yet. In July of last year it was back in thewsame lymph nodes so here I am three days my second round of Carbo/ TaxoI . As I am 74 this year the side effects are more severe and I have spent most of the day bed.
You may well ask why I told you my story. The main reason is is to give you hope that you can survive without surgery although I will always wonder how I would be now if had it. I followed the advice of looking at it as a chronic disease which may or may not have to be zapped now and then.
The other one is keep asking questions get a second opinion if you're not happy with answers. Now I must get out of comfy and eat something before I faint. I am breaking the rules which say eat little often.
I want to wish you all the best for the future. Take care
X X
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Hi IrishMolly
Thank you so much for sharing your story I really appreciate it and you give me hope for the future. You have had a big fight. From the replies I have had I have decided the opportunity is not everything. Quality of life more important. I hope your current treatment helps you and I wish you well for the future too.
I was 3c diagnosed Aug 2017. I didn't have surgery as it was thought they wouldn't be able to get it all. Finished carbo/platinum may 2018. Have had 3 monthly scans and including last week's scan they have all been stable even swollen lymph glands have gone down to normal, I also feel well. So don't lose heart l am 78 and am doing well without surgery so it can be done. Best wishes.
Th ank you Amerthist that is amazing well done you. It gives me hope for the future. Keep well.
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