I haven't posted in a while since receiving the "remission" about 6 weeks ago, wanting to distance myself from cancer for a while. I was diagnosed with stage 4 OC back in May 2017 with a CA 125 of over 5000. I'm now at 27 after 10 months of carbo/taxol and surgery last August. Ultimately they found the cancer originated in the fallopian tubes. The stage 4 diagnosis was only due to the pleural effusion, which was not malignant and has completely resolved. The cancer had not spread to any other organs. That said, I'm not considered NED because the latest scan showed some tiny "caking" in the abdomen, but my onc is quite convinced it's scar tissue. For that reason I'll be scanned every 3 months instead of 6 to start. He did use the word remission, though! I'll take it.....
Ending chemo is a wild psychological ride, as many of you well know. I'm almost afraid to use the word "remission." Taxol did a number on my joints - mostly knees - and I'm slowly getting out of pain. I can walk a mile now, slowly, but I get there. My goal is to get in the best physical shape I can.
The other reason for this post is to share what I'm taking to boost my immune system through the guidance of my naturopathic doctor who specializes in cancer care. Here is Washington State NDs are licensed doctors and my insurance covers my visits. I've been into supplements for many years, but some of these I never heard of. I hope this helps someone! Love from Seattle USA, Kathy
Fucoidan (Doctor's Best) 300 mg 2x day (immune booster/anti cancer made from seaweed)
Turkey Tail (Fungi Perfecti) 2 capsules 2x day (immune booster/anti cancer made from a specific type of mushroom
Meriva (A potent form of curcumin/tumeric) for joint pain as well as anti cancer, 500 mg 2x day for 45 days
CoQ10 to boost energy 200 mg 2x day for 45 days
Phosphahdyl Serine 100 mg 2x a day for "chemo brain"
I also take digestive enzymes. I'm on an "anti inflammatory diet", limiting simple sugars to 15 grams per day and focused on protein (50 grams per day), fruits, vegetables and 8-10 glasses of water per day. I've also been advised to transition to cosmetics and creams without parabens and other harmful substances.
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kat98116
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Hi Kat, I love to read good news, it's so great to hear that you're NED.
I know about Turmeric and Q10 but the others I am going to look up, maybe I will put it to the Onc team and get the pharmacist to check if any shouldn't be used with chemo drugs, but if they won't harm and just MIGHT help it may be worth trying - unless they're horrendously expensive.
I'm curious about your diagnosis as stage 4 because of the pleural infusion as I had this plus huge amount of seeding in abdominal cavity, but am only stage 3c because no cancer cells were found in the pleural fluid. I'm in the UK so maybe that makes the difference. Do you know any more about this difference?
I was also firstly awarded the stage 4 diagnosis because of the awful pleural effusion, but soon after downgraded to stage 3.
I am in the U.K. also. Simply riddled with tumours in my belly, but nothing inside any organs, which gives me hope of staying clear, as I finished treatment the 5th of March 2018, with no evidence of disease. The carbo/taxol and fabulous debulking and vaporising surgery did its work!
They don't use the term "remission" here, so we are either NED or totally screwed!
I plan on staying NED with an anti-cancer diet (antiangiogenetic) with appropriate supplements, too.
I am also a Vegan now. Avoiding milk products. I love cheese, especially Haloumi, so this is sad, but cancer is sadder.
I will look up 'antiangiogenetic' as I've never heard of it, maybe I could try it, not sure I could go Vegan though. I am vegetarian but I have to follow a low fibre diet, which excludes pulses, raw veg and nuts.
Iris, your journey sounds very similar to mine. They never tested the pleural effusion fluid for malignancy (ascites was malignant), but are assuming it was clear. Where I am being treated here in the US they don't seem to "restage". Also there was some initial discrepancy in my staging between my medical onc and my surgical gyn-onc. The surgical onc won out because anything outside of the abdominal cavity was considered Stage 4. Don't know if this makes sense to you, but I still consider myself Stage 3 in my mind....as does my medical onc. In any case it didn't make a difference in my treatment.
Am I missing something? "Vaporising surgery"! I avoid dairy in all its forms but do have some unpasteurised cheese (like Roquefort to stimulate the gut biome).
During surgery, if you are lucky to have one, your surgeon had a special laser device that cauterises the remnants of lesions in your abdomen and in my case, 200 spots along my bowels!
I forgot what it is called, but that is how it was characterised in the surgeon's summary.
Oh wow! I never heard of that. I, too, had many microscopic spots remaining after my surgery in my abdomen, which chemo was supposed to take care of...and it did! My surgeon said if he were to remove all of them it would have been a 24-hour surgery. I'll have to find out if anything was "vaporized" while he was in there.
My surgeon also said it was impossible to remove all of the 'spots', he said my bowel was like "sandpaper". He removed a lot of lesions though, and left "nothing bigger than a mm" and I'm happy with that. Unfortunately both he and clinical Onc agree chemo won't get rid of it all. On 2nd line Carboplatin now and doing ok 🙂
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