Quick call CH up . Six lots of chemo since 2011 , one trial on pembrolizumab ....and since November , funny bowels ! Just needed to keep going to the loo and couldn't leave the house for fear I would get caught short ! Ct scan two weeks ago showed stable disease , some on the march , and one large , orange shaped mass pressing on bowel , bladder and bits ! Into action at UCH , start gemcitibane and cisplatin on Wednesday ....yesterday saw bowel man and he was adamant that surgery was not an option . Too much scar tissue , difficult to get to and that a stoma would be inevitable . He would only operate if drama / last resort . So the good news is no operation , and the bad news is , no operation ! Chemo will have to do its stuff , and having rejected drugs in the past , I anxious . I am sure we will.put the stuff in very slowly ....holiday next week off , Whitsun likewise ...I will stagger from week to week , keeping things going at home . Husband back at work full time after stroke a year ago , so only fair that I cook ! Tumour block is being looked at for BRCA somatic positive changes ( might get PARP )/ and blood tests for BRCA even though I was negative 7 years ago ....new science!? London wet , murky and miserable , and spent today under the duvet with temperature and general ughiness ...there you are , up to date ! I shall keep my chin up but God , it's hard at times .
Well , it's all been a bit of a winder ! - My Ovacome
Well , it's all been a bit of a winder !
Hi love,
Wishing you all the best, yes, London is miserable, but spring is coming and hopefully you will be sorted out with your treatment. Everything always looks better in the sunshine,
Best wishes,
Carole xx
Here's hoping the gemcitibane and cisplatin does its stuff and you won't need that operation. Have you had this combination before? Interesting that you're being relooked at for BRCA, hope that works out.
Spring is round the corner and you'll soon be able to work on your garden. It's so much more enjoyable than doing housework.
It certainly is, my dear.
And there's never an unambiguous good way forward with this annoying companion.
I'm assuming they'll look at things beyond BRCA in the somatic investigation, as high HRD would also support PARPs. I had my blood done again and needless to say, it showed no difference second time around.
I found carbogem quite tolerable, but gem is tough on the white counts and you may need to get a GCSF boost.
So I think this means you won't be in clinic on the 10th....? What a pity.
Big hugs and, as you say, chin up.
xxxx
Hi Mac27
What is a BRCA somatic mutation and what is HRD. Sorry for my ignorance!!
XX
They can test two things: germ-line (i.e. your blood, you) and somatic (tumour). These don't always match. Somatic testing may throw up useful info for treatment if genetic mutations show up. In my case germ-line is clear, but there are some as common as muck mutations in my tumour sample. HRD is, I think, homologous recombination deficiency. Some clinical trials have subdivided us even further than BRCA or not, into whether we have variations with this deficiency. In some cases, women have done better with certain drugs if they have it, eg Niraparib. This is the sum total of my knowledge!
Thanks for the info.Mac. Will try and get my head round it.
xx
Mac 27 is a genius in her own lunchtime !
I had Gem in 2013 ....exhausted me ....and I have had cisplatin twice and coped BUT last time it was a ward job whilst they dripped it in , hence my anxiety ...I am no different to anyone else ! I may well be in on the 10th as things are being moved around .
Chins actaully , chins !
Memory like a sieve. I knew you did. Still, in some ways you're stronger now and perhaps may cope better with it? I hope we do overlap on the 10th. And you did make me laugh. Weather here is due to improve seriously on the day we start back! xx
Thanks for the update. Good to hear about your husband. By ‘eck you’re a tough one, six lines! You know your stuff so if you thought it was a good idea to get a second opinion on the operation you’d most likely get one. I wish you much strength and hope you take easy cooking options this Easter. I have a leg of lamb ready to go in the oven for my mum’s visit today. Once it’s in all I need do is the bulgur wheat and a few greens, which my sons will do. They don’t know they will do it yet but when they wake up they will be overjoyed I’m sure.
Take care and keep us posted if you feel like it
Netti xxx
Suffolk is miserable too this weekend, & life is hard at times living with this beast. But we plod on, and look forward to spring & anything we have lined up in our lives we can look forward to. I hope you are feeling a little better today. Enjoy your holiday, & good luck with your future treatment. Di
Angela, you sum up well what a lot of us feel 'God, it's hard at times' - and yet we do what you say, plodding on, keeping things going. I have such respect for what you've been through. Hope the sun shines a bit today.
What a rollercoaster, Angela. The ladies have already said a lot of what I would have said, so keep on trucking! Vicki x
Everybody has said it all Angela, but generally we, as a gender, are tough cookies, you’re an inspiration to us all and it really is tough at times but we plod on regardless. I hope the next line kicks this disease where it really hurts and you don’t need further surgery. Well done on hubby getting back to work I hope your ughness buggers off soon, maybe a little bit of sunshine would perk us all up a little. Keep strong lovely lady ❤️Xx Jane
I'm really sorry that you have had to put off your holiday and hope you get sorted soon. Stoma is not great but you can't get caught short so not all bad if it happens. Parp sounds encouraging. Wishing you both all the best.
Hi Angeladale, yes it is very hard at times. Definitely Braca testing is worth doing as it does open you doors to Parps, I wish you well with the treatment and hope you get some relief and time off when its done. Wishing you all the best
Thank you for support . always worth having x
Hi Angela
I felt dizzy reading your post trying to watch all the plates you had in the air and still seeing your sense of humor coming through. So many things to think about and you still march on. I just want to wish you all the best with chemo which you will no doubt get through with your usual courage. Meanwhile I wish you a sunny happy Easter .
XXX💚💕
I do feel as if I am spinning plates : I could do without the temperature I have been running since thursday ...yes , sun is what we all need .x
Oh Angela I’m sorry to hear all this. I’ve been praying so much I think he will be sick of hearing my voice. It is so difficult.
I’m in hospital with a bowel obstruction, disease in the peritoneal is on they’ve too so starting cisplatin/gem this week. Have to say I’m worried about it but not much choice for 4th line. Gem is the tough bit of it as I’m travelling from belfast to Manchester for each chemo and if bloods not right then delays will cause both stress and financial pressures
All the very best for your treatment and if Brca comes back positive then will open up parps I’m Brca 1.
Hope some sunshine breaks through too and don’t stop telling Him how hard this is and how we all need a break ! 🙏🏻 xo
Keep plodding on Angela, It’s how I feel too but it’s the only way!! Hope you get some help with the cooking if you’re feeling awful though. I’m on Gem plus weekly taxol - also 6th line - how did I get to 6?!! It’s doable, so far. I found Cisplatin tough but you say you found it ok before - funny how we all react differently to the drugs. Will be rooting for you. Must get up having a lazy bank hol Monday morning so far, but as you say weather grim so not a lot of incentive to get out! Take care,
Madeline. Xx
CA125 Post operation have increased and treatment options
A bit of good news
