New diagnosis... & Enzalutamide question

[Broccoli24]

Hi guys, I've been reading these APC posts for a few weeks and I have to say that I massively appreciate your shared knowledge, humour... and grace. It's helped me face where I am, and not paint it too black. Thank you!

DX start of July, PSA 530, Gleason 7 (4,3), low volume Metastatic PC with extensive lymph node spread (I hate writing that). I got put on Firmagon (Degarelix) immediately - no real SEs 7 weeks later apart from hot flashes and a bit of fatigue (I know more will come later).

Blood tests taken last week before I was put on Enzalutamide - PSA had dropped to 0.88... I thought I'd misheard when she told me.

I'm also experimenting with supplements.

A friend with a difficult to treat cancer eventually refused chemo/radio/surgery. Instead he went on a radical vegan alkalising diet, and took various supplements, homeopathic and otherwise. I thought he was ill-advised to take that route... Within two years his cancer was gone. Fully gone. That's 12 years ago now, and he's still fit and well. I can't ignore it. So, I've decided to go the full standard of care, and complementing with diet/fasting/supplements etc. I'm now full vegan/wholefood/organic (wondering about fish for omega 3). I eat between noon and 8pm. Cramming in as many anti-inflammatory cancer fighting foods as possible - Cruciferous veg, broccoli sprouts, Curcumin, cooked tomatoes, pomegranate, leafy greens etc etc. Exercise feels like medicine. Cold showers too... anti-inflammatory. (I know everyone has there own journey... I think this route has to be mine... it feels right to me.)

I've spent last 7 weeks reading medical studies & trials of new treatment possibilities alongside various herbs (berberine/black seed oil/etc) etc. It's a minefield with info pointing in all directions.

Finally my question; I'm now on Enzalutamide and am concerned about negative herb/supplement interactions. I want to carry on a fair portion on the supplements I'm taking... I feel like they might have helped with my PSA drop, alongside the Degarelix. Who knows. The NHS, which has otherwise been amazing, offer no help at all apart from to say, don't take ANY supplements... not even Vit D. Which doesn't feel right.

So... which do I keep, which do I drop? I think some inhibit/induce P450 enzymes CYP2C8 & CYP3A4... which also metabolises Enza... so I may end up with too much or too little Enza in my system.

Does anyone know a good resource where I can check herb/drug interactions/contraindications? Or a good person to ask? I'm new to all this... steep learning curve!

What supps I'm taking;

Black seed oil, Berberine ,Pomi-T, Zyflamend, Resveratrol, Boswelia, Sage leaf extract, Dandelion Tea, Peppermint oil caps, Vit D3, occasional B12 (because vegan), Aspirin (75 mg every other day), Omega 3 (every other day), Pharmaceutical CBD oil to help sleep, Probiotic capsule, Ground Flaxseeds, 1 tsp Curcumin extract mixed with black pepper & oil.

I was considering adding a few more, and may take some of the above away (any advice welcomed); Liposomal Quercetin, Vit K2, Turkey Tail (Fruiting body or Mycelium??), Reishi mushroom, Theracumin, Grape seed extract, Ellagic acid, Sutherlandi Frutscens, Indole 3 carbinol, Sulfurophane, modified citrus pectin, Melatonin, 1tsp bicarb soda daily, Genistein, Silibinin, Triphala (Ayurvedic), grape seed extract.

Jerry's final thought... for some reason I feel calm... if I can push myself beyond whatever the median life-expectancy is, then maybe advances in medicine will help me, and all of us, out. Here's hoping. There's a great thing I read by Stephen Jay Gould about median life expectancy - 'The median isn't the message.' Worth a read if you haven't come across it.

journalofethics.ama-assn.or...

Anyway, that's about it... thank you... I appreciate you guys (and wives/families of guys)!

[lcfcpolo]

Hi. Sorry that you find yourself here. I'm in the UK as well and have been on Enzalutamide for just over 4 years along with quarterly Leuprolide injections, in my case I have Prostap injections. I have had a great response from a high PSA of 1311 but you have had an even better start.

Of the supplements that you take, I take POMI-T and a probiotic, YourGut plus in my case. So far I have had no negative interactions.

Of the drugs you are considering I also take Prostaphane ( Sulfurophane) quite expensive but appears to be the best on the market and small studies have been done using this, it is called BROQ in the USA. I have been prescribed melatonin 2mg as well. Modified citrus pectin is one I'm considering, I know someone who has had success.

I've not found a drug interactions checker that works for supplements. There are a number around that show drug interactions, the mayo one is pretty complete.

I have gone down the repurposed drugs route. Again, expensive and no idea if it helps. The Care Oncology Clinic in London offer Metformin, Atorvastatin, Mebendazole and Doxycycline. They check your latest blood results. Cost is over £300 every 12 weeks.

I think you have to do what you feel is right for you but do keep your doctors informed. I do a patient record request after every blood test so that I have a copy to look at. My biggest regret after 4 years is not keeping up with exercise, I've lost some confidence. Good luck to you.

[Papa1 in reply to lcfcpolo]

Try MSK’s “About Herbs” app.

[Broccoli24 in reply to Papa1]

Thanks, it's great, very useful indeed... but doesn't have the info I'm hoping to find... specifically about how much certain herbs inhibit a particular set of enzymes which metabolise Enza/Xtandi and get it out of our systems.

[Broccoli24 in reply to lcfcpolo]

Thank you for your reply... and sorry also that you're here too. I read your bio and it looks like Enzalutamide is working well for you. I've been a bit nervous about reading of side effects, and have felt quite a few new musculoskeletal aches and pains this last week.. maybe it's my body adjusting to the medication. How have you found prostrap? I feel like I had such a psa fall with Degarelix that maybe I should stick with it. Will ask my Oncologist.

I've seen the MSK ask herb website and app, both are great but don't give specifics re the effect of a herb's inhibition of the metabolising enzymes I'm worried about. I wonder if doctor's have access to something more comprehensive. I don't like all this guesswork too much.

I've wondered about the COC protocol... my oncologist actually suggested putting me on Metformin. What's your take on it? I read Jane McLelland's book and think there's a lot in it... there's certainly a move to seeing cancer as a more metabolic/mitachodrial disease now... but there's also something about her I'm less sure about.

I hear you on the exercise... it's hard. I've been absolutely forcing myself... and somedays it's just a walk. Anything to get the blood moving.

Thanks, and good luck to you too!

[PELHA]

Any tricks for taking the black seed oil? I got some for my husband but it does taste a bit like gasoline so he’s not a fan!! Have mentioned on here before that we keep brewed iced green tea on hand (as an alternative to beverages with sugar in them.) (Is iced tea in the UK still considered weird?) And he has a hot cup of it in the morning with lemon and honey.

[Broccoli24 in reply to PELHA]

Ha... yes, I had the same reaction... I just put on a Jack Nicholson voice and say 'Drink up son, it's doing you good.'

We do have iced tea here... but rarely the weather to go with it... a hot brew works all year round... though now hot flashes are a part of my tea drinking experience.

[PELHA in reply to Broccoli24]

My husband just started low dose (.1mg) estrogen patches for the hot flashes and to help with bone density. We learned about it on this blog. Neither of his MOs are knowledgeable about this and not on board. But it is helping to minimize them noticeably and we do check his estradiol levels. Keep an eye out for the published results of the PATCH trial late this fall which compared over many years doing the ADT vs doing high dose Estradiol.

[Broccoli24 in reply to PELHA]

Thanks, that looks like a good shout. I had seen something about it. I think as well as bone density it’s supposed to help with ‘brain fog’. I already feel like I’m getting a bit of that… losing words mid-sentence… but I might just be imagining it. I don’t know how quickly all of that stuff happens. To be honest, it’s all quite exhausting at the moment… so maybe I’m just tired.

[artmus in reply to PELHA]

capsules

[j-o-h-n]

My only comment -

Good Luck, Good Health and Good Humor.

j-o-h-n

[Broccoli24 in reply to j-o-h-n]

Thank you, and the same to you, j-o-h-n

[Kaliber in reply to j-o-h-n]

Yea me too buddy. But it’s “ their “ life and you just gotta let ‘em . After all , any of us ( in the USA ) can ask for the “ kit “ and check out any time we want. This isn’t anywhere near that. Hopefully. Cringeworthy imho , but I’m a strong SOC person and I trust my life to my medical team. Everyone is different.

Love ya buddy

❤️❤️❤️

[Broccoli24 in reply to Kaliber]

I totally understand strong SOC, but when I was told we can’t cure you, only treat you (until the inevitable), it made me want to see if there may be other complementary options. My MO told me he’d had a patient refuse treatment, against all common sense, go down the herbal route and cured himself (different cancer) within a year. For legal reasons he couldn’t/wouldn’t tell me what herbs… but it did lead me to think I’m not completely insane to research and explore it. As long as it won’t interfere with SOC… hence my question, I want to know what I need to drop so I don’t mess it up.

Cheers!

[Broccoli24 in reply to j-o-h-n]

Same to you as in, good luck, good health and good humor 😊

[Mafedna]

our cancer care pharmacy specifically recommends NOT taking berberine and Xtandi.

[Broccoli24 in reply to Mafedna]

Thank you… very useful to know. Did they mention any other herbs/supplements not to take. I just got told a blanket, don’t take anything, which can’t be right. I want to work out what it’s safe to continue with, and what to get rid of.

[Mafedna]

The pharmacy advised that berberine, garlic , uva ursi, milk thistle, goldenseal may increase the toxicity of Xtandi. St Johns Wort may decrease the toxicity of Xtandi. We had asked about these specific ingreadients that were in a naturopathic tincture.

[Broccoli24 in reply to Mafedna]

Thank you, that’s very useful to know… I eat a lot of garlic!

[Hotoneii]

I'm amazed that all the food and supplements you mentioned are pretty much exactly what I've been taking, with the addition of hacc, betulinic acid and lemon grass, atorvastatin and yes, fenben, also liposomal apigenin. I'm also taking 24 mgs melatonin, but just bought 20g bulk powder and plan to start on 200mg daily. This is not for sleeping but as antinflammatory/ free radical scavenger. The benefits and lack of s/e are just too great to ignore. Also there is no feedback suppressor loop with melatonin. Do some research on this.Sorry I cannot advise on interactions, but I would not trust the NHS advice on supplements too much, they are not thinking about how you feel but only the results of their protocol, which seems to be the same for all patients. I had my issues with them, see my 2 latest posts. Do not stop vit D/ k2 m7, cancer patients need this! If you have doubts get your levels tested. Obviously keep monitoring liver enzymes and other symptoms. There is some good advice on other posts as well.

Exercise is essential as well.