I have been on Xtandi mono therapy for 18 months and my PSA has never gotten less than .3.....for the last 30 days I went on Xtandi/Indomethacin 50mg and my last PSA on Jan 14 was <.1...synergistic with Xtandi and Zytiga and can reverse resistance to either drug and knocks down AR-V7...google Indomethacin/Xtandi and read all the studies...in clinical trials now...can even prevent castrate resistance because prevents intra-tumoral production of T
Gus
Gus,
boy does this sound like something I need. I've been on Lupron 2 years...After a year and a half declared castrate resistant...and now I've been on Xtandi for about 6 months and my PSA is going up every time I have it checked. Is this something you were able to get your doctor to prescribe? I did get my regular doctor (not oncologist) to give me a script for Metformin...I need it bumped up ...as I'm only at 500 MG a day....but will Oncologist's prescribe Indomethacin? Maybe I should say I have joint pain?
John
What dose are you taking?
Are you pulling our chain again? If not, great news....Keep it up, oops I meant keep it down.
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 01/21/2019 12:41 AM EST
Indomethacin was one of many drugs I took last spring, as part of a clinical trial. The trial evaluates how apalutamide works in 'combination' with other drugs, prior to undergoing a prostatectomy. My oncologist said each drug in the study comes at the PCa in a different way. The pathological specimens from surgery (gland, lymph nodes, etc) went to three cancer research centers in the Seattle area for research. My postings are here: healthunlocked.com/user/tkalaf
TK,
how many mg of Indo did you take a day and what was the dosing schedule
Gus
One 50 mg capsule (3 times a day). That is to say, 150 mg every day. I took them daily (along with the other trial medicines) for 12 weeks straight. I had to keep a pill-diary of medicines taken, and turn it in every 4 weeks. Hope this answers your question. 
Wow….did the 150mg of Indo bother your stomach
I did not have any stomach issues. Before I started, my oncologist suggested that I take a proton pump inhibitor (PPI) daily, to help with the stomach. I then purchased Nexium 24 Hr (in bulk off Amazon), and took a 20 mg pill daily. The Nexium is not a part of the clinical trial, yet I added it into my daily intake. I suppose it worked.
fyi - following quote copied from my clinical trial Consent Paperwork:
"Indomethacin is a FDA approved non-steroidal anti-inflammatory pain reliever. Basic
science research indicates that it may also function as a hormonal therapy, and enhance the
effects of drugs like abiraterone acetate and apalutamide."
I remember my oncologist telling me that each medicine in the trial goes after PCa from a different angle. The trial is to learn how they work together in combination, to starve out and or kill the PCa.
Did you ever find out the results of the trial and if Indo had positive results
I have not visited my oncologist since my pathology report from surgery. At that time, he said the report confirmed 90% of 'm'y PCa was eradicated. The report went on to say reason likely attributed to (pre-surgery) consumption of ADT & trial meds. He also shared another participants' result, where pathology revealed 'no' PCa. I believe there may also have been 1 or 2 participants that did not complete the trial, due to issues taking the ADT & trial meds.
As for published results from the trial, I'm sure its' too early. I am thinking of scheduling a follow-up appt. with him in June (year after my surgery). It would be nice to get more information on the trials' outcome. Thanks for asking! Take care!!
Nal,
I came across the clinical trial in Calif. Then I just started doing my own research on Indo because it was a drug I knew I could obtain
Gus
Great results!
I believe this is the link to the clinical trial in CA that you referenced, which started in Jan 2017 and estimated completion in June 2020 - clinicaltrials.gov/ct2/show...
Primary objective - To assess the toxicity of indomethacin and enzalutamide when given in combination, and to determine the prostate-specific antigen (PSA) response that is defined as a 50% or more reduction from the baseline.
I really hope this is a viable option. Maybe too early to tell, but we can't just sit around and wait. Your experience is very encouraging. Did you get the prescription from your MO or PCP? Were potential side effects and toxicity discussed?
I have been on Zytiga for 6 months, but PSA is already rising from 0.12 to 0.38 after RRP 6 weeks prior? MO stopped Prednisone and replaced it with Dexamethasone 0.5 MG hoping it will control the increase. Will discuss using indomethacin with doctor.
there is a lot of clinical results outside the trials....I figure how can a NASAID be worse than all the toxic drugs already in use...what I am trying to prevent is progression to NE PCA a side effect of the anti-androgens like Xtandi
Dexamethasone appears very similar to Indomethacin. Did you consider this as an option?
Hi gusgold! Does not your blood pressure increase? a side effect of zytiga is its increase ..
When do you take it and for how long?
Thks!!
Nal,
can not get ultra sensitive PSA.....But during my research on Indo found out it can block resistance to both Xtandi and Enza and knock down AR-V7...in one medical practice Indo reversed radiographic progression and lowered PSA in 11 out of 13 advanced crMPCA patients. I also found a study where Indo was able to block intratumoral production of T in crMPCA that had progressed beyond needing the AR where Xtandi no longer worked, like in NE PCA...this is what got me to get my Doc to write a prescription....In the clinical trials they are using 50mg to 150mg...so I went with the lowest dose of 50mg to see what would happen. See what you can dig up. In my case been on Xtandi over 18 months so figured I would use Indo as a pre-emptive strike, as Xtandi and the other anti-androgens can lead to NE PCa
Gus
Nal,
I take Indo with food 25mg with breakfast and 25mg with evening meal...yes it is powerful stuff, that is why it probably works...but I have not had any SE...I had the same idea as you that it would be good mixed in with all the natural anti-inflammatories I already take
Gus
Gus. Are you still taking other supplements and medications such as metformin while on xtandi and indomethacin? I'm on the the full dose of xtandi plus I'm starting the four drugs mentioned by Nalakrats which are supplied by the care Oncology clinic. I'm struggling to get them all down plus the BIRM, the Beta Glucan and the stuff made from cabbage which makes me want to throw up just thinking about it! I "acquired" some indomethacin which my GP found out about because the online pharmacy told him, so I'm going to have to find another source. I am trying to make up my mind what to drop from the drugs/supplements so I dont feel quite so crap on the bad days. I'm all for killing the AR-V7 variant because I am a prime candidate for NE PCA and it looks like indomethacin might do the job. So are you relying on the xtandi and indomethacin to keep the cancer at bay or are you still taking other supplements? By the way I'm sure you'll have it covered, but i got quite a long lecture from an online doctor about taking something to protect your stomach lining. In my case its Lansoprozole.
Richard
I don't take anywhere near the amount of supplements that Nal takes. Right now I am taking Xtandi - Metformin - Avodart - Arimidex - Cabergolin - Indomethacin - DES.....I figure if this does not work I am going to Plan B which is wrestling Gustave. My Doc says because I followed Nalakrats Protocol I have 3 months to live so I am in training for Gustave.
Patrick reported on Indomethacin two years ago and now we're just starting to see this as a viable option. Hope we can all stick around long enough for these new discoveries to become mainstream. I don't have any possibility of getting a script for this until it does. Apparently the side effects and possible organ damage are real so I don't think I would go it alone and get it from some overseas pharmacy.
healthunlocked.com/advanced...
I'm still waiting for these guys to save the day.
Gus, I am happy that you have proven on yourself that Indo... works to lower PSA. I am tempted to follow your lead. I just thought of bouncing a few ideas off you first. I am on Zytiaga for last 10 months. It looks like it has reached the end of the road as PSA climbing from a low of 0.2 to 0.8 over the last month. Does Indo... also work with Zytiga as you indicated in your post. I was tested negative for ARV7. Does it make sense to try Casadex with Indo.. now although I came off Casadex after triple hormone blockade years ago, when doctors decided I had become resistant to Casodex. Much value your opinion
Ras,
I read where Indo works with either Xtandi or Enza...I doubt Casodex would be of much value...If you have never used Xtandi I would try that
Gus
Tks for your views Gus. I guess I will have to move on to Xtandi as PSA progresses on Zytiga. Given the severe SE some patients experience, on Xtandi I figured Casodex would be a compromise, as I am told it works the same way as Enzalutamide. It may be a long shot, but wondering if it possible to re-sensitize Pca to Casodex with Indo?.
Dear Gus,
In your posting above you allude that Indomethacin is synergistic with Xtandi and Zytiga and can reverse resistance to these drugs. You did mention this was the only off label drug that has knocked down your PSA. Please share with us on how you are doing on this protocol. Hope you are well. I am on Zytiga which has stopped working after a year. Am looking at you experience for guidance with doctors supervision of course.
Some good news!!
Is Xtandi necessary or even helping me?
Should/Can I take zytiga/xtandi et al without metastasis diagnosis
Has anyone seen testosterone rise on xtandi while still on lupron?
