Scan results

Hi,  Ahr it's such a worry I know but get yourself away on your hols and hopefully you might forget you troubles until you know what to worry about..I myself was diagnosed 4b oc and I think even thou you get told ned it's always in your head it's gonna come back! It was end of 2021 I found out, like you chemo and op now on Niraparib, however, I found lump in my neck I've had a scan and I see oncologist next week ( eek) the waiting is so hard, it's like I want to know but then again I don't! So like you I am fearing the worst, my ca125 was up to 806 so a lot to give me grief... But it is what it is we need to be strong and wait until we know for sure, then we can get our heads around it, until then my lovely, let's try and live our lives to the fullest, as the song goes: 'One day at a time sweet Jesus '... Best of luck to you! and make the most of each day! x

Hi

We are on very close time lines with this, it’s such a blinking journey for sure and maybe once you’re diagnosed no matter how hard you try it’s always there. The oncologist says there’s a name for ca125 watching it’s called ca125 pychosis, lol, we are clearly all the same. 
I totally understand you having feelings of not wanting to know. in this six weeks I was terrible at the beginning then in the middle I was just having as nice a time as I could and was happy in my ignorance before I potentially had bad news, then at the end I was fretting thinking here we go, I’m about to find out!!!!!

There are 21 of us going on holiday so I am desperate to get there. Feeling better in that the oncologist said that if it starts showing they won’t necessarily go straight to chemo but will keep me on maintenance till it’s more established!

The parp inhibitors have made me feel pretty rubbish too so hoping a reduction might help.

Try to have some nice days before you see the oncologist, sending you lots of positive vibes let me know how you get on xx 

Will do hun, ah the holiday will be fabulous 21 of you how could you not have fun plus you have had good news! We need to put this niggling thoughts to the back of our heads! (Easier said than done) x

1. Absolutely!!!! We’ve just to keep putting one foot in front of the other and making the most of time, shame you have to get this awful disease to really see what’s important in life. Ah well, have a lovely bank holiday weekend and speak soon x

Hi my lovely, well as I thought reacurance, so it's more chemo for me, I need kidney check so hopefully I will get started pretty fast... At least I know what's what this time round, only sad that it's came back so quick, I always thought I might go for ages before it shows itself again! Not to be, the Niraparib obviously didn't work for me which is so disappointing as tor some they can work for years, and it means I won't be offered any maintenance drugs after this chemo, so fingers crossed it works for me.  I always new the chances of it returning so no big shock but already I'm going ahead of myself wondering how long after this will it be back! I no I shouldn't I no I should say Thank God I can have treatment and there is always, always hope! But the negative thoughts do lie heavy on my mind,. I just have to take one day at a time! and believe it's all going to be ok!!! 

Hope you are enjoying the sunshine, getting you ready for your fab jollies! 

Hi huni

Ahhh no no no!!!!!!!!

Feel devastated for you, this bloody disease!!!!

I know you were half expecting it but the reality still hits hard and like you I tend to always think ahead too and what will happen but to be honest I don’t think there are many people who would react any differently. It’s all very well saying stay positive but when you’re looking this disease in the eye that’s a big ask. 
I didn’t realise if you have a reoccurance they won’t give you maintenance anymore tho for me they make me feel so awful and with a rising ca125 think it’s only a matter of time for me too.

Do they say how many chemos they will give you? Have they mentioned more surgery?

Cant stop thinking about you :( here if you wanna chat more, sending lots of positive vibes your way, you’ll get thru this, like you say u know what to expect and things that will help you . Was always glad I had chemo thru the summer, make sure you get lots of fresh air xx

Evening, sorry it's late but I won't be getting much sleep tonight, oncologist said 6 rounds of chemo every 4 weeks,  caelyx, never heard of that one before, so of course I straight away googled it, a lot say ok a lot say bad, so I'm thinking I just need to try for myself, we have to put our trust in our doctors, no there was no mention of surgery, soon as I got away I thought ' why didn't I ask about op' hopefully I can get that in next time I see oncologist..told me to stop taking Niraparib as looks like it stopped working, I'm thinking did it really work at all for me as ca125 keeps going up and have had terrible back pain but I will never know the answer to that, at the minute I do feel like I've been a bit cheeted going through so much and not really have anything to show for it, only to have to go through it all over again, but I will, we have to and we have to do it with faith and hope, I will cry and torment myself about the what ifs, I think we need to, then just face another day with all it brings!  And for you stop worrying until there is something to worry about! You are fine apart from side effects which will probably get much better when dosage is lowered, think positive! You have a fabulous holiday to plan.  Take it easy, sending well wishes! and a hug.

Hi sorry I didn’t see you message last night, I’m always in bed soon even if I’m awake half the night sometimes.

I hope you’ve managed to get some sleep, bless you. I think your right that we have to just go through the emotion that surrounds this and then we calm down and get on with it. 

I totally agree with your feelings of feeling cheated. I think in life we and everyone else in the world thinks that hard times should be followed by a period of good but that’s not how this works. I have seriously thought the maintenance drugs have just made me feel worse than the chemo and op period so it’s like everything isn’t it, some things work for some people and not others. I started in September and my ca125 started rising in January, how long before your ca125 started rising? 

There is no getting away from the fact this is the worst so cry it all out and do as many things that make you smile. I always go to the beach when I’m really upset about things, have you got one near you?

Thinking about you and hoping you calm down with it all as soon as possible, take care huni x

Hi, regarding ca125 mine never really went down dramatically 500 when diagnosed, then dropped with chemo then op, but with maintenance drugs with in a month or so back up in 200, 300, was told ' you might always have a high on' ? but I did have really painful backpain,  so makes me wonder if at all maintenance stopped or slowed growths down, because if this lump on neck hadn't appeared I could have just went along taken tablets in ignorance, so every cloud, :)   oh yes I am very lucky where I live, fabulous area, I have Whitley bay, tymouth, etc., Just down the road, also south shields which also has wonderful Beach, I do like to take my little fur babies (Bobby) for walks down the coast, I do look and think how beautiful it all is, it takes the fact it could all be taken away for us to appreciate what a wonderful world we live in, I do think differently since diagnosed, ie., Don't let little things bother me and doesn't matter who is right or wrong, ahr well enough of that!!  You take care and I'm hoping your side effects do ease up for you! Have they lowered the dose.  Big hugs!