Just feeling down in the dumps after seeing my oncologist. He has never been positive about my outlook but I was feeling quite positive after responding well to surgery and chemo. But got a reality check now that CA125 has risen to 125.
What doctors would you recommend for a second opinion? Or is it a waste of time if protocols are the same all over the UK
Any recommendations for complementary therapies to help the immune system? I was recommended mistletoe therapy. Any herbal teas? I take D3 10000 iu.
I've changed my eating habits, do meditation and yoga everyday. Walk for 1 hour a day. I may need to quit work if continuing cycles of chemo start battering the body too much!
Thanks so much.
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Alentejo
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Dear Alentejo, I’m HGSOC (3c). I’ve been growing broccoli sprouts in a jar on my kitchen window sill. They sprout in 3-4 days and can be sprinkled onto salads etc. They contain sulphoraphane and indole-3-carbinol which are great for intestinal immune cells, according to Chris Wark (Beat Cancer Kitchen). They have these in far greater numbers than mature broccoli. I’m giving that a go. I try to drink matcha tea, though it does remind me very much of the henna powder I used to dye my hair with circa 1991! Sometimes I don’t do any of that and just eat cake! My oncologist is similarly doom-laden. I don’t suppose we can entirely ignore them but only we can know the great She-ra like powers we have inside of us. Don’t be down hearted. Katie x
Thanks so much for these tips ColinsGirl. I'll give them a try. I read Tim Spector's book 'Food for life' and I'm now eating fermented food everyday, and minding the amount of 'polyphenols' in my diet. BW.
You are always entitled to a second opinion. Protocols are not exactly the same all over the country, because some consultants are more up-to-date than others and some are more willing to tailor treatment to individual patients. Any major cancer centre can point you in the direction of clinical trials if other chemo hasn't worked for you. Try the Royal Marsden in London or the Christie in Manchester, but there are many others, depending on where you are located.
Thanks so much SopSinger. I'll ask my NCS about what the process involves. I've completed first line treatment. The surgery was successful and chemo carbo/taxol brought CA125 down to 20 in Feb and a clear CAT scan but it has been slowly rising and is now 125 despite taking Bevacizumab. He is advising that I wait for symptoms before initiating another chemo with carbo/Cayley and Niraparib maintenance, which i agree seems the best. I knew this progression was typical but wasn't prepared for the bleak outlook that I was painted. I shouldn't have asked so many questions!
Hello Altenjo: Please don’t be disheartened. I had extensive surgery as I have double rare cancer (Endometrial and Endometroid Ovarian Cancer) in Nov, 2022. Then 5 rounds of chemo and my CA125 started rising during chemo. I was told I am platinum resistant as the tumour had re-appeared during chemo, where my left ovary use to be. But as I was losing hope, the hospital did tumour testing which helped me qualify for immunotherapy. So far immunotherapy has been a blessing. Please request your oncologist to do tumour testing to see if you qualify. As for alternate therapies, I have overhauled my diet. I am mainly on a plant based diet and minimal dairy. I drink organic soursop tea everyday and take organic curcumin capsules. I also follow “prevail over cancer” channel on social media. Great information there too.
I wish and pray for the best outcome for you. Just don’t give up or loose hope, New treatments are coming out all the time. Please look for a clinical trial, or immunotherapy and targeted therapies. If you feel that your oncologist is not listening to you, advocate for yourself. It is your life! Get a second or third opinion if required, but do put your concerns in writing. It has more impact when it is in writing.
Thanks so much for sharing NanB12. You've been very brave so that's inspiring. I'm pleased to hear that immunotherapy is working in your situation, which proves it can be life saving in some circumstances. My oncologist dismissed it but it might be helpful further along the line.
Thanks for the helpful tips. I did buy Soursop when was told about it but then reading online about potential toxicity when taken for a long time, made me a bit cautious. I drink Herb Robert.
May I ask where you are being treated? I m going to investigate immunotherapy further, either at my current hospital or another. I wonder whether immunotherapy is offered all accross the UK or just in specialised hospitals.
hello Alentejo. I am HGSOC 3c diagnosed 2019. Had the chemo/surgery/chemo then 2 years of PARPs. Have used mistletoe for over 3 years now hoping it helps my immune system. It’s expensive but I do believe in it. Wishing you the best.
PARPS seem to work really well for patients with BRACA positive and HRD. I was told the efficacy of the available maintenance drugs for those with BRACA neg, HRP is more limited. But let's hope more medication will come along in the future.
I'm in the states has your onc done Second Generation Tumor testing to check for PDL1 if positive you would be a candidate for Keytruda (immunotherapy) also test for FRA folic acid if positive Elahere would be a choice. I'm low grade high grade has a lot more options I would get a second opinion I've read excellent reviews for Dr. Christina Fotopoulou in the UK.
Thank you Saint Germain. Yes, that's true about low grade. I was considering that in relation to the BRACA mutation. I've written down the Keytruda spec. I'll ask him about the PD1 but it may be that he is following protocol and consider immunotherapy if everything else fails. I know there is an ongoing trial for Elahere in the UK. It hasn't been approved in Europe and UK yet. I don't qualify for the trial, but hopefully this means another medication will become available in the future. It's quite helpful to have insight the treatments in the US.
Hi Leniko, I'm on first line treatment. Had carbo/taxol with surgery midway, and now on avastin. Although NED at the start of Feb and and CA125 of 20 it is now 125. My doctor says I'm incurable, treatment will basically consist of chemo after chemo until I cannot take it any longer either because it stops working or i'm too battered by it, which sounds pretty terrifying and bleak. He says that CAT will not show any disease at this stage as is likely to be microscopic but certainly there are millions of cells still inside me. He reckons next cycle will start at beginning of next year followed by Niraparib, which is a PARP but works best on those who are BRACA positive and HRD. I asked about immunotherapy and other drugs but he says immunotherapy hasn't had great results for OC and Elahere is not yet licensed. I checked the Elahere trial in London but I don't qualify. Would I need to go to a specialist hospital to see if I qualify for immunotherapy? I must say that that i'm worried about receiving chemo year after year. I know I should feel grateful if I get a response and control the disease even for a short period of time, but how long will my body cope with this treatment? Thanks
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Chemo delayed again as I’m 0.7 neutrapenic
Back to chemo....
PPC - back on the merry go round 
So grateful for all of you
