b****r, got my results this afternoon after ct scan last Thursday after my ca125 went from 20 to 80 since January. I only had my last chemo in Dec grrrr, I was hoping for a lengthier time in between, I had over 2.5 years from my first diagnosis.
Well the sod is back in the peritoneum again. Doctor thought maybe I have gone platinum resistant even though I am BRCA 1 but wouldn't know for sure unless I have some more platinum chemo?.
The only good thing is that I feel well (I didn't even have any side effects until the day after they told me it may be back- not sure if that was physcological )and my appetite is normal. Because of this I am waiting for a few weeks unless I start feeling unwell then luckily I will have the choice of 2 trials. A parp inhibitor/chemo trial or an immunotherapy trial.
I took part in a parp/placebo trial over two years just after my first line chemo finished so they will have to get my details from drug company first to see what I was on - as if it was the parp I won't meet the criteria.
So rubbish results but a yay to being eligible for trials😀
Has anyone been on either of these type of trials? It would be interesting to see how you got on with them . Sorry I don't know the actual trial name as waiting for the doctor to email the information to me .
Big Fighting pants well and truly on and pulled up high 😀😀
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Lucidalil
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Tried to reply via the HU app but it wouldn't post l so sorry to read your news. I hope you stay as symptom free as possible so that you can keep your strength and get through the next few weeks till trial choice. It's important to try and keep as well as possible for treatment so I hope you can keep on doing that. Mentally it's a blow isn't it? So again I hope you can either speak to someone or use this site for sharing.
Not sure I'm coming across as I want to so apologies if I haven't.
It's a god job we know how to put our fighting pants on !
Thank you so much Clare you are an inspiration on this site. You always have time for others even though you are going through so much yourself- many thanks and lots of positive thoughts and hugs sent your way
Sorry to read this. Mine has gone up to 97 it was 64 in January. Oncology Thursday. I quite like the idea of PARP inhibitors. I was told oliparib only available for 3rd line. Good luck with treatment
I am sorry to hear that your marker has also risen- good luck for Thursday.
I am sure there are people at my hospital that have been on Olaparib as maintenance after trailing it.
I did a 2 year trail on olapharib/placebo i am just waiting to find out which I was actually on. I will let you know as I had a 2.5 year remission then my marker started rising again 2 months after I finished the trail.
It's good that you are feeling so well while you wait to find out which trials. Keep up the spirits while you wait. I'm on an immunotherapy trial since November and am doing very well with the added plus of no side effects!
I am keeping myself very busy (anything to stop negative thoughts). I am still helping my friend on her small holding and doing lots of charity bits for the Marsden.
That's great news about your immunotherapy trial - especially no side effects! !
Thank you and wishing you all the best on your trial 😀
Carolyn xx
So sorry you got this back so soon hopefully whatever the plan will be will keep you well for a longer time and there is no reason why it wont. Sending you a hug and hopefully you will feel a little better about it in a day or so
Sorry to hear it's back so soon. I'm on a parp inhibitor trial and have been for a year. I've had longer this time than between my diagnosis and recurrence. My cancer was back in 9 months first time and it's been 14 months this time and long may it continue 😃 First couple of months were tough but doable then it just settled. I get tired but have a great quality of life and no real side affects. Praying I can stay on a lot longer. Scan on Wed so will know more then xo
Hi Im soooo sorry to hear about your results, its a blow to say the least. Im on Olaparib (BRAC2) following a second recurrence, currently 3 years 7 months in remission. I do hope you get a trial thats suits and gives you a long remission . Big hug. Kathy xx
Thank you for that information, Wow at your remission on Olaparib, that is very encouraging.
I think I may have been on the placebo on my 2 year trial as my recurrence came within a couple of months of it ending - I should find out this week and with post the result.
It is business as usual for me I am carrying on exactly as before- maybe a few dietary changes. Making the most of feeling quite well😀😀
I think the trial is immunotherapy/chemotherapy chosen by computer so have been hit with the s**tstick so many times it would be my luck to get the chemotherapy lmao. But I will wait to hear from the hospital as with my blurry mind on Monday I may have misheard.
Thank you Sandra, after being in this position several times now . I go into the appt after a scan thinking the worst that way things can only seem better😀
The only thing I find hard is seeing the effect on your loved ones. My mother lost her battle aged 41 so I am well aware of the effect it has on people you love.
I am going to have some lovely times with my family and friends, I love painting and crafting so will carry on making things for my fund raising .
It's the only way ahead isn't it? Making the most of every day.
It is sooo difficult for our loved ones isn't it? I know my daughters find it especially hard. I lost my Mum in January, she was 82 and had precarious health all her life. I miss her but am still greatful every day that I could treasure her for so long. Life is very precious.
Hope you get back to good health and enjoy many more years.
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so frightened i cant think..
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