Run out of big pants

[BigBern23]

Hello ladies,long time since I posted, diagnosed 2014 high grade serous, chemo and surgery, more chemo after recurrence, 2ndry surgery London ( ended up with stoma) , More chemo every few years ,finished 5th lot of chemo this Sept. Also had blocked bowel and 2 major blood clots and still have picc line as was on weekly drips for low magnesium.. CA was over 2000 but down to 60 odd and CT showed at least half cancer gone but also showed my back pain was down to a fracture L1 vertebrae as now have severe osteoporosis too. Now only 3 months after chemo Consultant has said my CA gone right up and has arranged for another CT after Xmas. I really dont know how much more of this I can take, have had carboplatin only apart from first line when I had taxopaxcil too. Obviously not going to get Carbo again, have tried parp inhibitor ( Brac -ve )am I running out of options ? Terrified but having to keep up positive face for hubby and 2 girls . Read about Olaparib being given to HRD positive cancer but I know nothing about this and other than the Brac test never been mentioned, could they test for this so far down the line ? Not ready to give up yet but feel all the doors are closing on me. Sorry about the rambling, best wishes to you all xx

[BigBern23]

Thank you

[Ruebacelle]

Hard to know what to say. I am in 9th year but had easier time. Cancer never went away but no one has mentioned stopping. You have had a much more intensive experience. Is there a reason they didn't try doxil or combos avastin plus a chemo. I'm on 2 daily oral chemos plus avastin every 3 weeks. Do you feel a second opinion a different approach might be helpful? What country do you live in? Keeping spirits up while trying to figure out what to do is a very heavy lift and hope you have people who can help. Sending positive thoughts and love from paris

[Morini]

Hopefully those big pants are just in the wash and you'll get them back soon.

You've done amazingly well with a seemingly intense series of treatments. Is it possible to look at whether there are any suitable trials?

My understanding is that HRD is diagnosed from the tissue rather than bloods. You could enquire whether they hold any to test (after my op in 2023 they went back to my biopsy from 2021 to test and confirmed HRD positive).

I do hope you can park some of this and enjoy your Christmas).

Thinking of you xx

[Beatbigc in reply to Morini]

Oliparib can he given if your somatic (tumour) is HRD homologous recombination deficient (bad at repairing themselves)

This is a test they apply to the cancer not your genes. Ask for this. I’m also BRCA negative domatic and germ line but my tumours are HRD which means they are more likely to respond to PARP inhibitors like oliparib. Only way of knowing is to ask for your tumours to be tested.

[Newbery3]

Try to find out if you are HRD positive then push for the parp olaparib, or zedgula. Get a second opinion . In the meantime enjoy Christmas X I hope santa brings you New Big Pants Xxxx

[Lochawe]

hi there,

Gosh what a journey.. wishing you further options.. and wondering why they havent tried caelyx (chemo) or avastin (immunotherepy/maintenanace)

Maybe time to get a 2nd opinion?

Wishing you all the very best

X

[Lizchips]

I was also diagnosed in 2014, I have a great endocrinologist, about 7 yrs after he noticed calcium dropping bones getting thin. Every year I do a 25 minute drip, IV, to help replace calcium I've lost. Ask about it. Might help. Best wishes Liz

[SopSinger]

There's always time to do a genetic test - your genes were set when you were born (actually when you were conceived) and they're not going anywhere. Ask if you think that would help you. And I endorse the suggestion of asking for a second opinion. It can't hurt and might help.

[Pixiepurple]

There has to be something they can do. You need to get those new pants for Christmas, the more colourful the better. Your hubbie & girls need you. New year 2024 new fight. If you are not happy with what they are offering you. Get a 2nd opinion xx best wishes. Xx

[jsc50]

Oh BigBern23, having read your post I've had to respond. I'm low grade, though where we both have arrived with regard to to progression is very scary to say the least. I find myself, like you in similar circumstances. I'm glad you are intent on keeping up the fight, and not giving in to it yet. I've only just been moved on to palliative, and because of prolonged issues of nausea and vomiting I shall be in hospital throughout Christmas with an NG tube inserted.... grim. Immunotherapy now hanging in the balance. I have grandchildren aged 10, 8 and 7, and feel like you about the future. I am setting myself targets, to reach for and am determined to get to and beyond each one. Developing the right mindset WILL enable us to win each time. I hope you find my advice of help. Keep in touch, and GOOD LUCK.

[Pixiepurple]

Hey Bigbern23 just checking in to see how your doing? X

[BigBern23 in reply to Pixiepurple]

hi Pixie purple, had a CT just after Xmas and get my results this Fri, normally have phone consultation but she has called me in this time. Feeling very pessimistic as all the signs are there,constant background nausea,decreased appetite and niggling abdominal pain. All 5 lines of chemo over the years have been carbo,with pacitaxol firstly and lastly with added gemcitabine so not sure what she will say. Just know it's getting harder and harder to put those bloody pants on again. Thank you for asking and hope things are good for you in 2024

[Pixiepurple in reply to BigBern23]

Hi BigBern23,Hopefully there will be something new. Maybe a new trial? Best of luck on Fri. I hope the news is good. X