hi all. , I was first diagnosed in 2020 and have managed to get here with various chemotherapy’s . Unfortunately , Avastin and Olaparib didn’t work for me. As a last resort I am on Caelyx but after only 2 treatments I am breathless.
I had great hopes to move on to Elahere but unfortunately it is not recommended if the patient has had more than 3 previous lines of treatment .
I’m looking for help as my oncologist seems to have decided there is nothing else to help me !!
I’m not ready to give up. ! We could pay for the Elahere as insurance wouldn’t pay due to the restrictions . Has anyone been in this position? Any suggestions ?
then has anyone had the problem of breathlessness due to fluid build up in the lung and survived ?
this is a fantastic forum and one thing I have learned is to not accept that there is nothing more that can be done .
wishing all you lovely ladies a very happy Christmas and praying that one day , there will Be a cure for this awful disease .
sending love to all . 🙏🙏🙏🎄🎄🎄❤️
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Lookingahead
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Hello, This is my reply to Beatyourself in case it helps you. I feel for you.
So sorry this is happening to you at Christmas. So, I am on my second recurrence but I have clear cell and endometrioid OC. Here's something I wrote about alternative remedies I was taking. Any evidence is anecdotal, based on my experience. Always check with your oncologist before using something they haven't prescribed.
So, I am dealing with the second recurrence and looking at third line treatment.
And wondering why my cancer (clear cell and endometrioid) stayed away for nearly three years after my first recurrence.
I tried a whole regime of vitamins, CBD and so on but eventually, there were too many for me to manage and I ended up with just fenbendazole and melatonin. See Joe Tippens Protocol on FB.
Then I realised that over the last few months, I had stopped taking melatonin altogether and had gradually been reducing the fenben to almost nothing. I took my eyes off the cancer. I started to believe that, after a series of clear scans, I was actually in the clear.
I had a 7mm lesion on my liver which doubled to 13mm in 90 days. Then I reordered what I had been taking. Another 90 days, new scan showed tumour had grown but only by 2mm. Might just be a coincidence but you can bet I am still taking them.
And also read about Ivermectin (horse dewormer) that has had some good results with clear cell. On that as well now, with Tudca to protect the liver.
I have been lucky in that I refused the only option hospital gave me. Another dangerous, four-hour+ op, probable stoma, and then 6 months carbo/caelyx.
Went to see re trial at Marsden, not suitable, but their letter recommended I have no treatment at moment. This strengthened my resolve and I have just had targeted radiotherapy instead.
What I'm saying is that when you're not given any other options, how can it hurt to try something alternative?
I simply cannot believe they want you to give up. Do not go gentle into that good night.
Hi, I just wanted to answer your question about your lungs building up with fluid. Have you had a drain? I had terrible pleural effusions earlier in the year, I basically only had one lung working, but I had 3 drains (they drained off about 6 litres in total!) and if the build-up continues there is the possibility of having a permanent drain fitted. I don't have experience of this as my chemo stopped any further effusions but apparently it's quite unobtrusive and the district nurses can come and drain up to a litre at a time whenever it's needed.
Once this solves your immediate problem, you can try and tackle your treatment going forward. Keep advocating for yourself, as Candy Apple Grey says there are lots of alternatives worth trying and you should definitely get a second opinion if your oncologist has essentially given up on you...
Wishing you all the best and a peaceful Christmas xx
Thank you so much for your reply. It has cheered me up on Christmas Day . I had 3 litres drained from my left lung in May but a small amount remains . It didn’t cause me too much trouble . This is now on my right lung but at the moment is quite small and it would be more dangerous to drain it // they will drain it if it increases . Thank you for the encouragement to keep fighting ! I do look for treatments on here that is available to other people around the world to see if there is anything I can follow up .
My mom is in similar boat. Having pleural effusion on both lungs and breathing issue. Taping helped and they left her with drain. Currently she had one cycle of Topotecan and Etoposide. Doc wants to try 2nd round to see of it makes a difference. I will update if treatment shows promise. I would say keep looking at options. You never know what can stop the progression..Best wishes and Merry Christmas.
Hi, please look up Jane Mclland cancer group. As well as finding other folk for support, the group has a great files section, and is full of positive people, many are still going 10, 15 years after being told " there are no treatments left". 🙂💚
Hi lookingahead, 👋 I'm sorry you are going through this at Christmas. I've completed first line treatment but c125 is already on the increase so I'm also 'looking ahead'. I'm glad you've had some positive responses here. I just watched Dr Rowan Miller's webinar 'treatment for recurrent ovarian cancer' on ovacome and it has given me hope on the variety and number of treatments on the near horizon for platinum sensitive and resistant cancers- 1-2 years. I wonder whether you could get a referral to a specialist cancer treatment in London? Big hugs
Firstly I hope you had a wonderful Christmas. I am sorry to hear that you are breathless and your oncologist thinks that this is the last option.
Please explore immunotherapy specifically Pembrolizumab (Keytruda). It has been a miracle for a lot of Stage 4 cancer patients and especially for people with cancer in their lungs.
It is definitely worth a try. You have to always advocate for yourself.
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Stage 4 ppc
Cancer now in lungs
is there any hope for me
metastatic cancer in the omentum and lungs
Just joined, diagnosed last March OC Stage 4
