Some good advice: Treated with Zytiga... - Advanced Prostate...

Advanced Prostate Cancer

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Some good advice

joancarles profile image
33 Replies

Treated with Zytiga during the 17 months since the diagnosis. My start was very dramatic with a PSA of 1350. The month of August 2018 reached nadir of 0.17. But from September to February we have been raising the PSA. 0.19, 0.26, 0.45, 0.76, 0.96 and today 1.29. As PSA goes up, concern rises.

At the beginning of the diagnosis initiate vegetable diet. I added curcumin, pomegranate and green tea.

I try to be active with an average of 9 miles per day.

I'm 52 years old. Diagnosed at 51.

I do not know what else I can do or add to help stop the progression / escalation of the PSA.

Any idea will be well received.

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joancarles profile image
joancarles
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33 Replies
GP24 profile image
GP24

A PSMA Lu177/Actinium 225 therapy could help. Can't tell if you can get that in Spain.

joancarles profile image
joancarles in reply to GP24

Thank you very much for the information. In the Spanish public system there is no possibility of Lu177.

Investigating in a private center

NPfisherman profile image
NPfisherman

If your kidneys function ok, and no history of stomach ulcers/GI bleed--one poster, Gusgold I believe, on this forum added indomethacin to Zytiga and dropped down further from his nadir....there is some information on this combo from NCI---this below:

ncbi.nlm.nih.gov/pubmed/277...

This was not a phase 3, but if your looking to squeeze some more mileage out of Zytiga, this is a thought... More drugs are coming, just not as fast as I like--if you could get an extra 6 months or longer out on zytiga--worth a try in my opinion...

Keep up the exercise and best of luck...

Fish

joancarles profile image
joancarles in reply to NPfisherman

Thank you very much for the information. It really is my goal to be able to extend the treatment with Zytiga for a few months.

My oncologist wants to continue until there is evidence of progression. Next month I have the tests

Tall_Allen profile image
Tall_Allen

Try switching from prednisone to dexamethasone. Show this to your oncologist and discuss:

onlinelibrary.wiley.com/doi...

Trecento profile image
Trecento in reply to Tall_Allen

Thanks for this tip.

joancarles profile image
joancarles in reply to Tall_Allen

Thank you! I already proposed it. And he did not pay much attention. I will insist

Tall_Allen profile image
Tall_Allen in reply to joancarles

Make sure he reads the link.

joancarles profile image
joancarles in reply to Tall_Allen

I have collected the document that you have attached. In the next visit I will introduce you.

A hug

Tall_Allen profile image
Tall_Allen in reply to joancarles

I've found that sending a study before the meeting gives the doctor time to look at it.

Hola,

You are a little ahead of me on the battle front, 4 months ago, my Dx PSA 1000+, the meds, got the PSA down "AT THE MOMENT!". So, the docs think they're doing their job - I don't think so. Perhaps, we should have SOC telehealth technicians and Labs on wheels like food trucks. Cool, whatever burrito with a blood draw!

Joan Carlos, I'm not joking around at your expense, always read your posts and it's just warriors trying to make sense of it all. I hear you, waiting for my PSA to rise...

No proactive treatments whatsoever, mind you, my docs from Dana-Farber, and my second team, Lahey Health, the mention of Avodart and Metformin, they look at me - like I need mental health consult.

A good way for you - is to dig down and read relevant post here, clink on the tags, fast way to filter your current focus. For example, Zytiga, Avodart, Metformin, etc. search on topics that have proactive aggressive posts, for instance, anything Dr Myers is wonderful for us . Although, this forum's tags are biased, obviously, people are people.

I would do anything for a real Paella now, currently live in Boston, folks here think Spanish food is greasy slop of tortillas, rice, beans, cheese, guacamole and mystery meat.

:O

joancarles profile image
joancarles in reply to

I keep inverting and asking. I believe in the knowledge, experience and solidarity of all of us on this path.

We all learn something that can help us.

I hope you have good luck and a lot of strength

in reply to joancarles

Absolutely!

The question is, would your docs actually react with the information? All the best, you have an edge already in the fight, your challenges will improve the care.

j-o-h-n profile image
j-o-h-n in reply to

It's rice and beans from Monday to Saturday... on Sunday it's beans and rice... ?que pasa amigo?

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 02/08/2019 5:56 PM EST

in reply to j-o-h-n

Hola Amigo,

Haven't got my fix of Cuban food lately, need to take a trip to NYC or Miami soon, the withdrawals are brutal.

Having zero Testosterone, is more bearable..

j-o-h-n profile image
j-o-h-n in reply to

Cuba Libre.... you mean New Jork...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 02/09/2019 12:59 PM EST

NPfisherman profile image
NPfisherman

Okay... You have has some solid advice--look at changing from prednisone to dexamethasone (Tall Allen and his study), and look at adding indomethacin (as per the study I posted--always take indomethacin with food), and that should buy you some extra time...and when done, look at the LU-177...Get your MD on board....You got a game plan, brother....Now---KEEP FIGHTING !!!

Fish

joancarles profile image
joancarles in reply to NPfisherman

Looking and contrasting the information of indomethacin. Thank you

NPfisherman profile image
NPfisherman in reply to joancarles

It's your fight...the article is there...your life--your call...we all face this every day...it may not be right for you based on kidney function, gastric situation, etc...good luck

whatsinaname profile image
whatsinaname in reply to NPfisherman

Fish,

How much time (in days) between Zytiga and Lu-177-PSMA-617 ??

Thank you in advance.

Magnus1964 profile image
Magnus1964

Sounds like Zytiga is loosing it's effectiveness. You might want to move on to Casodex or Xtandi. Otherwise you on right track with exercise, vegetarian diet, and supplements. You might try added Vitamin D3.

joancarles profile image
joancarles in reply to Magnus1964

I also think that the moment of change is coming. Thank you

Trecento profile image
Trecento

Zytiga not to be taken with grapefruit - pomegranite and starfruit considered similar in mechanism. Maybe explore this?

Good luck and best wishes.

joancarles profile image
joancarles in reply to Trecento

I have not found any information

Trecento profile image
Trecento in reply to joancarles

Hi - here is patient info sheet, advising not to take grapefruit or St John's Wort.

patienteducation.osumc.edu/...

This article talks about these two substances in the context of CYP3A4 enzyme, and the substances that incuce it and inhibit it.

Grapefruit (and pomegranite) is an inhibitor and St John's Wort is an inducer. So, perhaps grapefruit is to be avoided as it may interfere with the Prednisolone, which is a strong inducer of CYP3A4 (however I certainly can't state as a fact that this the reason patients are told not to take it). On the other hand, St John's Wort is an inducer, so perhaps that also would intensify the impact of the Prednisolone. The article talks about how one or the other acts to increase or decrease the impact or efficacy of the drug.

Also - have heard varying theories as to why Pred is administered with Zytiga - to make the drug work effectively; to protect your liver; to replace the body's own supply of corticosteroid that is depleted by Zytiga. There also seems to be inconsistent advice about administration with or without food, and dosages - even amongst the patient fact sheets.

Anyway, hope this helps.

Trecento profile image
Trecento in reply to joancarles

Sorry, forgot to post the second link

selfhacked.com/blog/cyp3a4/

Magnus1964 profile image
Magnus1964 in reply to joancarles

I do know that grapefruit does interfere with some medications. So I avoid eating it too close to taking mine. Sometimes I will take meds with breakfast and have grapefruit with lunch.

Bebby1 profile image
Bebby1

You sound focused and driven

Good on you

Stay strong

joancarles profile image
joancarles in reply to Bebby1

I try to focus and fight. I do not get it every day.

j-o-h-n profile image
j-o-h-n

JC You know what I say to Pca? Huele mi ombligo...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 02/08/2019 5:59 PM EST

snoraste profile image
snoraste

I think you should pursue LU/AC PSMA route. There are centers all over Germany and England. There’s a chance that it might work better while mutation burden is still not too high, and you are not heavily treated yet.

Have you done any genetic testing?

Racer26 profile image
Racer26

You have to be on Lupron or allegard I am on zytiga , casadex, Avodart, Flomax all generic

Rod98168 profile image
Rod98168

Hi, sorry to hear your PSA is rising but that's a pretty dramatic drop from what it was. I would suggest getting on provenge immunotherapy as it works best when the PSA is still very low. Also, just been proven that a fasting diet of 3 days with drinking only water actually kills the cancer cells. And I would imagine the fewer you have in your body to begin with the more effective the fasting will be. You can go to the Norris Cancer Institute website and read it on there page because they're the ones that discovered this and did the study. You could also try get it on the phase 3 lu-177 psma study, which is also being effective stopping cancer when all else fails and there is also lu-165 psma study that was done in Germany and start prostate cancer in patients where even the lu-177 was not effective. But that study has not begun yet even in Phase 1.

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