Hi there, I’m still game to hear any off-the-Top-of-your-head questions that you’d pose after being told by both your local doc and your researcher doc at Duke that what you’ve got left to work with is Chemo, Provenge, and Xofigo. We were bummed that Duke had nothing to offer....no trials were mentioned. I don’t think the local doc (general oncologist) tries to keep up with available trials. What off (or on) the beaten path options would you inquire about as to why or why not they’re possible treatments?
Here’s a question...is there currently any way to obtain indomethacin outside of a trial? My dad is on Lupron and a reduced dose of Xtandi, so I’m wondering if we could give it a whirl.
Many thanks!
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Sea5
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It looks like indomethacin is an approved prescription drug. Any doctor can prescribe it, including a general practitioner. However finding one who will do it for prostate cancer is another story. I'd start by asking your Dad's existing cancer doctors if they'd be willing to prescribe it. My guess is that they'll refuse on the grounds that they don't recommend people creating their own clinical trials.
You may already know this but there is a trial underway and recruiting testing indomethacin plus enzalutamide (Xtandi). Your Dad probably doesn't qualify for the trial because they're not accepting men previously treated with enzalutamide. However you might want to call them just in case. It's slightly conceivable that they accept men on enza now but not men who have already failed it.
It looks like indomethacin is thought to restore sensitivity to enza and abiraterone (Zytiga) in men who no longer respond to those drugs. However it's not proven to work, and not proven to have long lasting effects - which is why the trial is underway. It can also have serious side effects (search for indomethacin side effects.) However, showing the trial info to your doctors, and showing them the articles from Pubmed, ASCO, etc (search Google for "prostate cancer indomethacin", no quotes, to find them) might give them at least a little reason to consider them - especially if there is no other choice. Note however that you do have other choices at this time and they might have to be tried first.
Chemo, Provenge, and Xofigo may not be your only choices. Lu-177 is another possibility. It seems to work very well for a few men, does some good for more, and does very little for some. Getting tested for PSMA "avidity" (i.e., lots of prostate specific membrane antigen (PSMA) on the surfaces of the tumor cells) can help predict whether Lu-177 will work. You could also try some of the "complementary" supplements mentioned in postings by Nalakrats and pjoshea13 in this forum. Both of those guys are (or were) scientists with a sophisticated knowledge of these things. I expect they'll be the first to tell you that complementary treatments can be helpful, but they don't have the power of the prescription drugs. The NCI list of supplements might also be of use, though again, the value of the supplements is strictly limited. See: cancer.gov/about-cancer/tre... Click on the "Health Professional" version for more technical info.
I'm inclined to think that chemo is the drug most likely to help, but like other drugs, it only works really well for a minority of men. It can also be tough to take, though I've read that lower doses given more frequently may work as well as the standard doses but with fewer side effects.
Alan, thank you ever so much for taking the time to share all this information with me, and to explain it so clearly! It’s a huge help, and I’m really grateful. : )
Looking at the two links that I posted before, I saw the following in the first article:
"In the Phase Ib cohort, patients receive Enza 160 mg po qd and Indo 50 mg po tid to determine toxicity." Based on a google search, it looks like "po tid" means "by mouth", "three times a day". The "po tid" look like acronyms for latin words. See: spineuniverse.com/treatment...
I presume the investigators think those are reasonable doses but beware they are trying to determine what a safe and effective dose would be and won't know until they've gotten down the road in the trial what the best doses would be. Notice too that these doses are complementary to 160 mg Enzalutamide each day.
Your ordinary general practitioner can prescribe indomethacin. (a cancer specialist is likely to say ask your GP). Its an older non steroid anti inflammatory, sometimes used for osteoporosis and gout. Its not unlike ibuprofen in its risk profile. Most common side effect is upset stomach but rare cases of over exposure have caused renal problems. Monitor the first few months. Not especially problematic. Recent work (google indomethacin prostate cancer) has shown that one prominent route to resistance for abi and enza is the expression of an enzyme AKR1C3 in a low testosterone environment. One of the Aldo-ketone reductase family, it mediates the production of testosterone from ordinary blood chemicals including cholesterol. Its how the cancer produces it own T internally when denied an external source. Indomethacin inhibits AKR1C3 specifically. That's important because you don't want to inhibit other aldoketone reductases which have vital functions. So the theory is that indo may reverse or prevent resistance. As my GP said when I explained, its old, its cheap, not too dangerous if you are alert to possible side effects, why not?
Based on the mechanism of action, Indomethacin may be useful to reduce resistance, not just in abiraterone and enzalutamide, but for any testosterone lowering or blocking ADT.
No real advice on Lupron other than it's worked well for me, along with prescription pills Casodex-Bicalutamide. My oncologist switched me a few years ago from Lupron to Eligard, but don't know the actual difference, if any.
Shooter1, and Sea5 and others considering indomethacin:
I don't think anyone will know the answer to the question of what dose is recommended. or if any dose at all is recommended, until after one of the clinical trial concludes and makes a report.
If it were me, I'd start with the lowest dose that's usually prescribed and work up from there, never exceeding the highest dose that's usually prescribed. The only thing I can think of for gauging success is a PSA test, so you'll want to get PSA tests frequently while you're trying.
I take 2x25mg (50mg) daily with food (important to take with food). I am on the older antiandrogen, bicalutamide. Evidence is that mechanisms of resistance to bicalutamide are similar to those for enzi and abi and indeed similar for most agents irrespective of mode of action. I can't say how effective indomethacin is because I am combining it with BAT which is also a means of reversing resistance for a while. I will post a report in a few weeks.
On my own. Here in Australia no doc will prescribe T to a prostate cancer patient. The "T is fuel for cancer" myth is still current here and no one will stray too far from Standard of Care. Check my profile for previous reports. I'm currently testing whether BAT is repeatable.
Thanks for that link. They say 'Canadian' but are they really? Pricing seems more like something in India. I am also a believer in outsourcing my med needs. I noticed that metformin is also available. Something that has been discussed on this site but which my GP refuses to prescribe.
Sorry, I just don't have enough information about your Dad to render an opinion, e.g., age, when diagnosed, PSA diagnosed, core samples tested positive for cancer, their score, is he metastatic, what meds taken to date, taken for how long, etc.
I am was 73 when diagnosed, 75 now. Gone through Lupron, Provenge, Zytiga, chemo. For me quality of life is #1 and although I understand my longevity is greatly compromised, I have done most all the thing on my bucket list I wanted to do and and not uncomfortable with ending the struggle.
"Can divide up to suit the occasion." How I yearn for an occasion. I could juggle the empty bottles or blisters packs. That would be my only occasion. Enjoy, enjoy, enjoy!
No Zytiga as had previously failed Xtandi after 15 successful months. In addition to indomethacin, at same time, began Avodart and Casodex. So far PSa results are quite amazing. For how long, who knows.
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