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.
I am in Toronto, Canada. I am grateful that I qualified. Please advocate for yourself. I know in the US they are trying Pembrolizumab (Keytruda) on all types of cancers cause for many it is a miracle cure. Also, pray , pray, pray. When I lost all hope, prayers kept me going. Wishing you all the best.
Just had a thorough check and we are still behind North America with regards to the approval of Keytruda for ovarian cancer in the UK. I found a clinical trial for this drug stage 2 that stopped recruiting in 2022. Hopefully, it will be approved in the near future. BW
Hi, Yes I'm still receiving it. Reading online it says it is a anti angiogenesis drug. It targets the protein that helps cancer cells to grow new blood vessels.
Hi Nan enjoyed reading your post I’m in the states but have the same diagnosis as you Endometroid & Endometrial synchronous so glad that the immunotherapy is working for you. I have recently started drinking soursop tea I mix it with matcha green I’ll check out the channel you mentioned.
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.
It's an omeopathic treatment prescribed by a private doctor in the UK. They recommend you start with first phase treatment for cancer but you can start at any time. I have an appointment with an integrative doctor next week. I mentioned it to my oncologist and he is fine with it but I will run the list of medication past him afterwards just to be sure. It is an expensive treatment but I think the worse it can happen is that it doesn't work, so you can stop at any time.
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.
Your very welcome wanted to add treatments in the US I've had for recurrence Carbo/Taxol, Keytruda I don't have the PDL1 but high tumor burden which its showed some success with, Doxil I think in the UK its Calyx, currently on Avastin/Keytruda/Cytoxan (an older low dose daily chemo pill) luckily very inexpensive that is being used again and is showing some success when paired with Avastin and Keytruda I haven't really had any side effects from any of these treatments which is a blessing. Hoping your second opinion gives you more options and hope.
Thank you! Interesting the array of combos that exist. Good to know the side effects are minimal and it is working. I've noted those down and will enquire. I called the hospital nurses and they confirmed that they administer immunotherapy if the patient qualifies but I'll question my doctor about it.
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
Wanted to give you a few tips for caylex I sailed thru it pretty much chew ice during the infusion to avoid mouth sores I bought udder cream (Amazon) no scent absorbs very quickly put it on feet and hands for the first week after infusion I never had hand/foot problems.
I go to Memorial Sloan Kettering who stays on top of latest therapies. When Avastin stopped working for me, (was on for at least 2 years, successfully) , I was put on Gemzar chemo which was harsh and didn’t help.
My Onco suggested we try immunotherapy , it has lowered my CA125 dramatically. I would ask your doctor to seriously consider it. I understand your concern about ongoing chemo. I’ve been on and off various drugs since 2008
I also feel that I’m “incurable “. Does anyone ever get “cured”? Pretty harsh of your Onco to scare you like that. But I believe and pray that maintenance therapy will keep me going
Let me know if you want to chat further
Saying prayers! 🙏❤️
From the Internet:
“According to the results of the phase II BrUOG 354 trial, the combination of nivolumab (Opdivo) and ipilimumab (Yervoy) can improve survival and response rates for patients with ovarian or gynecologic clear cell carcinoma”
It is insightful to hear about your journey and the great response you're having to immunotherapy. It gives me hope!
We all seem to respond differently to the drugs that are available. I had hoped that Bevacizumab would keep me off chemo for some more time. I had a good outcome to surgery and first line chemo so I should be grateful for that. I think that the picture he painted of chemo after chemo, with ever shorter time gaps until one decides enough is enough and 'I can't take any more' was like someone throwing a bucket of cold water at me. I hadn't appreciated what 'incurable' meant until I actually heard the word. Yes, it is harsh! Anyhow, hopefully advances in science means we can keep living and as well as possible. 😊
I don't have clear cell but I'll investigate the immunotherapy option and seek a second or third opinion (!). Reading previous posts, I've seen 2 or 3 names of good doctors based in London and Manchester.
I can't comment on your questions regarding immune system therapies, but what I would say is that it can be frustrating getting dour speculation from an oncologist. Yes, they may speak from history and experience, but every one's medical journey is different, and I think giving too much power to a doctor's bleak outlook can be unnecessarily detrimental to you. You can be sure that not all oncologists look at the same data and take away the same things, so much of what the doctors present to you is filtered through their own temperament. If your oncologist is nihilistic, it may not necessarily be because your outcomes are inevitable, far too many simply want to cover their bases be presenting you with the worst case outcomes. But you deserve someone who is there to encourage and support you and help you locate the best options, not to bring you down. A second opinion from someone who you feel safe and comfortable with is a good thing, and worth your time to locate.
Thank you for comment kcha237. It is a fair point. Our mental health is so seriously impacted by this disease but our recovery also depends on good mental health. I would say it is a case of expectation management, as you mention 'covering their bases'.
I have full appreciation for my medical team and treatment received to date. My oncologist is experienced and received a top education and training. I can't find any fault with the treatment and i'm fully grateful. Looking back, what I took as negative comments all along from different medical staff was perhaps their way of trying to inform me of the present limitations with treatment. I don't think I'm alone in experiencing this.
I'm not sure how medics could do things differently but certainly words matter and a nurturing environment helps a long way. The NHS is under a lot pressure. It has been for a long time.
I will seek a second opinion because naturally my life is on the line!
Anyway, it is valuable to have a forum like this one as a support.
Out of curiosity, what were the statements that upset you? If you are willing to share, perhaps here we might be able to help give you a better perspective on what they might mean?
Hi. Regarding “incurable “ it’s just the way gyn oncology classifies OC once you have a recurrence but it doesn’t mean you won’t live a long time. Correspondingly they classify treatment from then on as palliative vs curative. It’s a shock when you first learn it but you get used to it. I hope your next treatment goes well for you.
It is overwhelming and, for me, keeping mentally well is what is most challenging, dwarfing any of the physical symptoms I experience. We’re with you, Alentejo.
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Chemo delayed again as I’m 0.7 neutrapenic
Back to chemo....
PPC - back on the merry go round 
