Hope you are all keeping strong and positive, which is not always easy!
I was wondering if there is anybody out there who is or has been in my situation. I am stage 3C HGS with three surgeries and three lots of chemo. My surgery was a failure last year as they could not remove all the cancer and told me if they had of kept trying it could have turned out to be fatal.
My latest CT scan shows stability but peritoneal cancer in the pelvis and cancer under my chest still remains and I am only on Avastin now which is keeping it stable but not killing the cancer.
Just wondering if anybody else is going through this situation or if their doctors tried any other treatment at this stage?
Love to all, Mags ❤️
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Although not quite the same, I am also facing some of these questions, having been on a trial before the side effects grew too much and it had to be stopped.
As with your surgery, the prospect of going on was too risky.
I have had two lines of chemo but the second was delayed with a 10 week gap in the middle while I was ill.
I think the key is to keep your ear to the ground for trials and new drugs such as immunotherapy (which is being trialled) and try to stay well so we can actually get on them!
You are young and you should have an oncologist who is proactively looking for treatments to suit you.
Thank you for your reply Lyndy, I did the Foundation Test and genetic testing and two Oncologists have said that I would not qualify for immunotherapy going by my results, and parps for second line patients in Ireland that do not have BRCA are discontinued at present but that might change in the future I am just concerned that I am not on anything to kill the cancer now. Thanks again, Mags
If you haven't yet asked for a second opinion, is now the 'right' time? I learned at the second of my two occurrences, that different teams have different skills and approaches. Certainly, the top OC Centres could be worth consulting with? If they say the same as your current team then you can 'rest assured' all is being done that is possible....but you never know until you ask the question.
Many thanks for your reply, I went for a second opinion and the Oncologist said I should watch and wait which I did before after Avastin and the cancer came back within 6 months so I did not want to do that again and she agreed on an aromatase inhibitor if I cannot continue Avastin in the future as I had to stop the last time due to high blood pressure and kidney disease. They also said I need a break from chemo at the moment and to wait until things are worse to restart 🙄
Hello again, I had to ‘google’ aromatase inhibitor so our chat has helped me learn something new😀. Like you, I would be feeling I wanted to do all I could to kill the cancer cells so am sharing what my GP told me 9 years ago after my second occurrence which is that while the medics sort out how best to kill the cancer (mine is/was clear cell) my ‘job’ was to grow healthy cells by turning my attention to “eating well, exercising well and resting well….and you will find the resting well part the hardest.” Luckily surgery by Prof Fotopoulou did the killing part and I have learned to ‘rest well’ in both mind and body, whilst enjoying ‘my’ foods and how I want to exercise my body with enjoyment and fun. Friends and family have added in their bits of support and watched with interest, I think.
Thanks Lesleysage, I worked through 6 years of this illness where I never had a minute to spare but I gave up work after my surgery last year. I walk 2.5 to 3 kms a day in a beautiful park and try to eat healthy but find resting the hardest alright 😁
The resting well bit took me about a couple of years of noticing details my head had ignored whilst I was working flat out, like you. Gradually, and with the help of learning mindfulness meditation techniques, I realised my body could rest whilst my mind was completely absorbed in ‘things’ which nourished joy in me.
From what you share, I feel you deserve a hug from yourself as well as lots of others who love you 😍 Please keep being kind to yourself as you work at giving this cancer a hard time!
Have you contacted the amazing Prof Christina Fotopoulou at the Hammersmith Queen Charlotte hospital? She is known for doing aggressive surgery on patients who have been deemed inoperable by other surgeons. I think she does online consultations, so you could do that and decide whether it's worth travelling to London for further treatment.
Thank you, have a routine appointment coming up soon with my surgeon and will see what he has to say first. After my last surgery I was told no more surgeries for me xx
Hi F, I don’t have the BRCA gene which I am happy with for my daughter but I see a lot of people doing so well on Olaparib. The original plan was for me to start Niraparib instead of Avastin this time after chemo but they discontinued it for second line patients in Ireland 🙄
I’m late again. Just popped onto the site after a short break and thought, “yes, I’m similar “. Stage 3c HGS. Cancer remains and no op in the offing.
Just finished 4th line. I had a good debulking back in Jan 2017 but they couldn’t get the small stuff. Was on Avastin then but NHS won’t consider it now (got mine via the Drug Fund).
I’ve had carbo/taxol/Avastin, ok for a bit then disease progressed and I had a reaction to carbo so 2nd line was Paclitaxel only. Ditto 3rd. My last was Cisplatin & Caelyx. The post chemo CT scan was a farce, they couldn’t find a vein, even with ultrasound, so done with no contrast. It looks like there’s been some reduction but bowel etc still has lesions - and it’s still in my liver (but they are almost guessing!).
I was told there were too many small lesions in my liver so inoperable. I might challenge this when I speak with oncologist next week. Otherwise I just wait for this disease to progress and hope chemotherapy will reduce it again.
I’ve been 2 steps forward and one back since 2017. That’s given me reasonable quality of life but fatigue & constipation have been a constant problem (not pain free either).
You don’t say but I’m assuming that chemo won’t work for you any more. What have they tried? That’s the big difference between us- chemo drugs have had some effect for me - I will have to have a break for a while but when this disease starts to progress again I still have chemo options - if I can tolerate it!
Someone here suggested you seek a 2nd opinion and that sounds like a good idea ( maybe for us both!).
Please continue this thread because I’d really like to hear more of your journey.
Hi Iris, your journey is very similar to mine since October 2016 but I have never had any symptoms or pain, do have tinnitus, neuropathy and joint pain from Avastin but they are tolerable. I had three surgeries and for two of them I had a liver surgeon and gynaecologist as the cancer spread to the liver. Last surgery they couldn’t get everything but chemo seems to have helped what was left in the liver (very small now) but peritoneal cancer remains. Chemo is on the cards again if it gets bigger but not carbo as had major reaction to it. Will keep you posted and the best of luck to you ❤️
Ah, Mags, Avastin has left me with tinnitus too! I also have neuropathy (toes) but that was from 3rd line Paclitaxel - and joint pain.
It’s a shame no chemotherapy drug has reduced your peritoneal cancer so far. I hope you can negotiate with your oncologist some treatment that will help, or if not, you can get a useful 2nd opinion that can offer you hope. Maybe a new trial?
Quality of life is all important and I’m happy with what I’ve been able to do between treatments. I just hope you also have had good times as well as bad.
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