Treatment

Hello Ladies - just wondering how do you know when your treatment is officially finished. Lyn xx

[Caroles1]

I would prove them all wrong and live on. I’m a stubborn little f....r as my lovely best friend always says.

It’s never over till it’s over, I would research and look for other alternatives,

C xx

[delia2]

Hi Lynn. I’m a bit confused about your question. I assume you mean your first line treatment, not all treatment forever? Could you clarify? Xoxo

[Hidden in reply to delia2]

Hello Delia sorry to be so fugue, yes I mean first line treatment, does treatment finish when your CA125 is in normal range, and CT Scans are clear. I have NED from surgeon and CA125 is within normal range, CT Scan is also clear, and yet my oncologist wants me to have Avastin for a year. Am I not already classified as "in remission" Lyn x

[Katmal-UK in reply to Hidden]

Hi Lyn, I trialled Avastin back in 2007/2008, originally alongside standard chemo then it continue every 3 weeks until the year was up. I was lucky enough to have nearly 4.5 years remission. I worked fulltime and just took a day off every 3 weeks to have the infusion. Side effects were minimal/totally manageable. Obv your choice but id say take it if its offered x Kathy xx

[Hidden in reply to Katmal-UK]

Hi Kathy - that sounds encouraging. I think I will give it a go, they are planning to add it cycle 6 then every 3 weeks. I have had to drop taxol from cycle 5 & 6 due to neuropathy, did you suffer this on Avastin?

[Katmal-UK in reply to Hidden]

Hi Lyn. I also had to drop Taxol after cycle 4. No I didnt get it on Avastin though I still have it in my feet to this day, 11 years on. Kathy xx

[Hidden in reply to Katmal-UK]

Mine got really bad, lost my balance and couldn't walk. I have been trying a TENS machine for the last week and it has really improved, my oncologist poo pooed its effectiveness, but I have seen an improvement. Lyn xx

[Katmal-UK in reply to Hidden]

Mine wasnt that bad but the more I walk the worse the issue gets and the more painful my feet are. I just live with the small price Ive had to pay for being here 11 years on

[Janet235]

In my view and several treatments down the line for me over 2. 1/2 years you NE vER know when your treatment officially ends

Except mine is now. No more...

It's quality over quantity choices now ..

🌈 janet

[LittleSan]

Hi Lyn,

You are always in control of deciding if you want to continue treatment. Your Oncology Team are experts who study the best medical evidence and have an awareness of what treatment is available via which funding streams. You are the expert of yourself and ultimately you are the one who says yay or nay to the treatment they are offering.

Being NED is great news but in the chance of some of the sneaky wee divils still hiding unseen, which is common in OC, Avastin is a way of cutting their blood supply. Yes there may be no wee divils left but if there are, then they need to aim to keep them under control. Offering Avastin, for those it is suitable, is the NICE standard for first line treatment on the NHS so will be proven clinically effective.

Ring your team for a good thrash around of the facts so that you make the best decision for you.

Sandra xx

[Hidden in reply to LittleSan]

Thank you Sandra, the surgeon did say that I still had microscopic scattering, which may be disease or may be scar tissue, they can't tell, so continuing with Avastin makes sense. Lyn xx

[Nstober]

The microscopic scattering is the reason I am sure why you are continuing with avastin. My sister became NED after her surgery in may, finished her first line in Sept and since there is a high rate of reoccurrence she started the 3 week avastin infusion every 3 weeks probably for 2 years. She has no restrictions, maybe a day or two down days and back out living life. You can do this and thankful you have great doctors. Xoxo nancy

[Hidden in reply to Nstober]

Thank you Nancy that sounds very positive. Lyn xx

[Lyndy]

Hi Lyn I got quite scared when I thought it was all coming to an end...so was quite glad to be offered Avastin for another year. By the end of that I was more than happy to stop! Don’t be surprised if you feel a little wobbly towards the end of first line....that’s normal too! xx

[Hidden in reply to Lyndy]

Thank you, I can imagine it is a whirlwind of emotion towards the end of 1st line treatment, but as you say I have a year of Avastin, while I come to terms with it all. Did you suffer many of the side effects on Avastin? Lyn xx