Dx 9/95 with Gleason 3+4 and PSA of 16.6. Did 16 months of ADT (Lupron, Finesteride and Casodex). During ADT PSA dropped to < 0.03. Stopped Lupron and Casodex 4/99. Continued Finasteride until Avodart replaced Finasteride on 3/04. PSA rose slowly from <0.03 on 1/00 to 73.2. on 8/20/19. Testosterone was 232 ng/dL on 6/12/19. Oncologist has asked me to consider Xtandi. Concerned about side effects. Has anyone tried Xtandi? What is best test(s) for Metastasis?
Would appreciate any ideas on what to do.
Written by
davidhike
To view profiles and participate in discussions please or .
PSMA scan where you have to pay $2700 out of pocket as it's not covered by Medicare. There might be another one that's better but I can't recall the name of it. It's not covered either. Lots of people here on Xtandi.
A NM Bone Scan might pick-up any extensive bone mets. Similarly, a regular CT scan could pick-up enlarged lymph nodes or other masses. More sensitive tests could include a Ga-68 PSMA PET scan or an Axumin PET scan. These may vary in price and availability depending upon your location and coverage. (It's always good to ask "What will I do differently depending upon the results of this procedure?") Detections of just 1, 2 or 3 localized "hot spots" might be treated differently than numerous wide-spread metastases, which, of course, require "systemic" treatment(s).
You have been off systemic Lupron treatment for quite a few years. You might discuss first trying a couple of 3 month depot shots of Lupron for a while before starting Xtandi? See how you feel and what kind of PSA response you might have. (If you do re-start Lupron, you could also anticipate a temporary bit of Casodex pills at first, to prevent a testosterone "flare".) If that does not create a good enough PSA reduction trend, then you could consider adding the Xtandi.
My experience when I added Xtandi around three years ago at age 68 was a definite up-tick in general background fatigue side-effects, above and beyond my just being on Lupron and having those side effects, too. The added Xtandi did, however, take my PSA from 95.0 back down to 1.2 within only a few months. Fatigue and an increased risk of falling while on Xtandi might be more concerning for the more elderly, too.
PET/CT with Axumin should be covered by your insurance.
David - You seem to have missed the boat? 24 years to get on top of this? Avodart does not seem to be used any more - one of the side effects is "increased risk of Prostate cancer"!
If you have tender ribs, sore back, painful hip area, you have mets without the need to take a scan. PSA of 73 = lots of metastasis. If you can afford a scan, that would show any problems that may need attention.
I suggest you try these things in order, as you have just a little time to experiment to see what works before getting into the heavy stuff:
(1) Get onto a strict raw food/smoothy diet without delay - your immune system needs an urgent boost. Zero sugar. Zero bread. Zero bottles.
(2) Add things like sleep, exercise, Vit D3, selenium etc - read up on this (3) Have as many Vit C via IV as you can afford for a couple of weeks
(4) Add Xtandi to the Vit C - it about triples the kill (the kill can cause some temporary pain as the dead cells are removed - this is a good sign) (5) If the PSA has gone down nicely (test 3 days after a drip - PSA measures kill), you can cut back on the IV and Xtandi to once a week (take at least one Xtandi capsule the night before the drip). This regimen has just about zero side effects, and may be all you need.
(6) Add Lupron etc. only if the PSA numbers are not going down (but now you will also get side effects and your immune system will be weakened).
Avodart and finasteride are actually taken by many men on this site to block the production of DHT. These 5-a-reductase blockers did not result in more prostate cancer, but possibly an increase in aggressive prostate cancer diagnosed late due to the lowering of PSA by these meds which resulted in a "masking" of the cancer. This however, does not preclude their potential utility as part of the arsenal against APC. Please do a search of this site to learn more.
Could you please reference your statment regarding Vitamin C tripling the kill caused by Xtandi, where is the research that shows this? I know that IV vitamin C has shown some benefit in certain cancers, but for prostate cancer this study showed no benefit to Vitamin C infustion: ncbi.nlm.nih.gov/pmc/articl.... High dose vitamin C works by two mechanisms, it blocks glycolysis and it induces oxidative stress in the mitochondria via H2O2 production. Since prostate cancer is not glycolytic until late stage, blocking glycolysis may push prostate cancer metabolism further in the wrong direction and probably not helpful unless paired with something that blocks mitochondrial function as well. The oxidative stress angle is still a valid one in my mind, but then IV C should be used with other oxidative strategies for cumulative effect. On its own, I question the value and it is expensive.
As a layman, I should not be involved with such things. But two close looks at the Pearly Gates got me asking stupid questions about how and why l ended up on these unwanted sight-seeing trips. To be blunt about it, I soon realised there is a vast amount if BS and mis-information out there (and also my bad assumptions), and my doctors were working from an out-dated manual. Their treatment was killing me. So I got onto a very steep learning curve to find some kernels of truth (many of which are to be found in this forum). It is not easy - the Internet is a minefield of BS and often plain lies. So ...
Point 1 - guilty of not being more specific. There are several Internet refs about Avodart, here is one of them:
WASHINGTON -- The FDA has issued a warning of an increased risk of high-grade prostate cancer with the 5-alpha reductase inhibitors finasteride (Proscar) and dutasteride (Avodart), currently approved to treat benign prostatic hypertrophy.Jun 9, 2011
Point 2 - PSA only makes sense if it is treated as a measure of KILLS (and not cancer cell count). The literature is full of "fiddles" to explain weird PSA values because a "count" is assumed.
Point 3 - I have no expertise with Avodart. I was really posing the question "Why it has fallen out of favour?" - there should be a reason.
Point 4 - After 140 odd Vit C's via IV over the past 2 and a half years, and 21 months of that in combination with low dose Xtandi, I think I am qualified to speak on the effects. I am constantly experimenting (Astelas are not!) to find the most economical combination to hold down the PSA numbers (currently at 1.28 - watch this space). The proof is I can CONTROL the PSA level and kill by adjusting doses.
Point 5 - The facts about Vit C. There are only 4 things in common use that kill Prostate Cancer - (i) The immune system has to do 90% to 99% of the killing, regardless of what else is used (ii) Vit C via IV (iii) Radiation (iv) the knife. With such a paucity of tools, Vit C is a vital asset to stay alive. On its own, it will NOT cure Pca, and its effect fades with time. Initially it may kill as much as 20%, but AT BEST it will kill about 5% after being in use for some time (which will make progress if the growth rate is below 1% a day). It can BUY TIME and slow things down. However, it is usually used in COMBINATION with various medications which usually increases both the kill of the Vit C, AND reduces the amount of "expensive" stuff used (often as little as 10% of the "usual " dose) AND improves the outcomes AND reduces side effects. I can get up to 35% kill with Xtandi (I am still using a box I got in May last year), but the kill rate is slowly falling. Other members of this forum say they are also going to try some Vit C and see if it works for them, and no doubt we will get some feed-back from them in due course.
Point 6 - I never advocate that fellow sufferers should abandon their "normal" treatment. I DO suggest, IF THEY HAVE THE LUXURY OF TIME to see if milder alternates work for them as this will EXTEND THEIR LIFE and QUALITY of life: (a) A raw food diet (b) Vit C as a minor booster, and (c) they add something like low-dose Xtandi if they can - BEFORE getting into the heavy stuff. Tens of thousands of poor people control their cancer with just a proper diet (i.e. stop doing what caused their immune system to fail). The strength of the (remaining) immune system will largely determine how long a Pca victim lives - a point the medical profession has forgotten.
Alas, EVERYTHING in the medicine cupboard harms the immune system to some extent - chemo just about destroys it. The "Cancer Manual" used by the industry has a HUGE amount missing, and has the wrong sequence of treatment to cut costs and extend life.
Point 7 - You have trotted out the usual trash about Vit C trials that are designed to fail. The 23 poor bastards in that Danish trial you highlight were given Ascorbic Acid via IV. It must have hurt like hell and they were lucky not to be killed! We actually use Sodium Ascorbate, which is pretty safe to use with basic precautions. It is essentially HARMLESS to find out if it works or not! It SHOULD be dirt cheap (about $10 for the kit, and a $20 admin fee), but FANATICAL resistance from lots of people with an agenda (or plain ignorance) have made taking vitamins an "underground" activity and thus expensive. Yes, there are rogues that pocket about $1000 a shot, but they have a long queue willing to pay, so who can blame them? If it is so useless, what are they doing there lining up to get more? Many simply get on a plane to "the East" to save money as such things are normal practice in these clinics servicing "poor" clients without insurance.
Hi David, My post may have sounded like I am against alternative medicine or that which is not SOC. That is actually not the case. My husband and I use quite a few supplements and off label meds, green juicing, fasting and dietary changes. I believe they help, and like many here, we aren't going to wait for a double-blind, placebo, controlled study to prove it as we slowly run out of standard of care options. So we use our logic and the available science to piece together our best adjunct treatments. I respect people's testimonials and find value in all of us comparing what works for us, but I do object to statements such as X kills cancer without evidence to back it up. When my husband was first diagnosed, we also did quite a few sodium ascorbate IVCs. I set up the IV in our home so was able to administer them regularly. I do not think that ascorbic acid is less effective than sodium ascorbate, just has to go in more slowly and has greater potential for discomfort and vein complications. We paired the IVCs with other oxidative therapies (Ozone, hyperthermia, water fast artemisinin and several mitochondrial inhibiting meds) so as to stress the cancer from multiple angles and I believe that together, they may have had a positive impact, but I do not know as he started androgen deprivation at the same time. Based on my knowledge of Vitamin C and the study I posted, I am not convinced IVC makes a big difference in PC when used alone. That is my personal take and I know it differs from yours, but that is what makes this forum rich. I suspect IVC makes a difference combined with other therapies, but I have no proof. Even though we are all managing PC, it behaves a little differently for each of us, so I don’t negate that it could work well for you.
Glad that we are actually on the same page! You will see that I am also not a fan of Vit C on its own as a way to cure cancer. Vit C on its own does start with reasonable kill rates (as much as 30%, but another the next day will be 10%, and another the third day will be 5%), but cancer is smart and very soon gets used to it and drops to 5% or below. Even if the kill is poor, that still leaves it as one of the only 3 known direct killers of Prostate cancer cells (with radiation and the immune system). All those expensive medications only slow cancer growth - none of them kill existing cells. It thus has use during the initial fight to rejuvenate the immune system (and stop doing what caused the cancer!) and to buy time. It will at least slow things down (even if it does not reverse the numbers) while getting things like a raw food diet going with some steep learning curve going so good decisions can be made on the next steps. I see in this forum too much "Rush! Quick! Cut and Burn now!" when in fact newly diagnosed patients usually have weeks (or even months) to see if they can get that PSA count turned around and going down again without the "heavy stuff" (I regard both ADT and Chemo as the critical "Points of No Return" for the immune system). You do not mention what went wrong with your initial attempt to get the immune system back to work. Did you do a strict raw diet for a few weeks? If it was half-hearted or "treats" were allowed it blows the good work and you get half a result - which is not enough to start mass killing of cancer cells.
You are never going to see any proper trials of either Vit C, or Vit C in combinations. Who is going to fund this? The whole subject is a "hot potato" or simply Taboo. Astelas are aware of my experiments and results with the Xtandi combo, but can you see them doing trials? The last thing they want is people discovering they can use tiny doses and get good results. I think there is another unknown mechanism at work, as 1 x 40 mg Xtandi capsule once a week clearly is way short of acting as an androgen blocker (which is the way it usually works for the super-rich). For the record, these are my PSA numbers when I started the Vit C Xtandi combo (Days-PSA): 0-16.2, 16-2.32, 29-0.82, 60-0.23. You can see that in just 16 days that PSA was crashed down (I got my life back and could walk again). That's a 95% kill over 4 weeks. Actual numbers. My Onco was astonished (he was not told about the Vit C), and so were Astelas (who were told). If you are familiar with the "normal" trajectory of the PSA with Xtandi (which kills nothing on its own), this is super-rapid and "impossible". The initial 2 weeks was full 4 capsules a day, but by 60 days it was reduced to 1 a week (I had to make that one box last as long as possible!). It was under 0.1 for about 8 months after that - on 1 a week (and 25gms Vit C). So there is your "Trial" and proof that this combo works (at least for some people). Do your own experiments.
Do I have an agenda? Yes - I would like to see Astelas selling part boxes so the poor of this world can make use of Enzalutamide. If they brought out a `cheap' brand, even better. If they got some trials going, they could perhaps open up a whole new treatment option (and actually make a lot more money than they do now). That "unknown mechanism" is potent, and deserves urgent investigation to see how it can be better exploited. Perhaps it works with other kinds of cancer too?
Hi. Interesting stuff re Vit C. Have you tried adding Doxycycline + Azithromycin at the same time as your infusions? Also you may reach a sufficient VIt C level with oral C plus oral DHAA, but making the stuff is a bit of s bigger.
I don't think adding gut poisons to the mix has any merit at all. Our immune systems are already trashed from ADT and other gunk, so we should not add something that will kill half the remaining gut biome and trash it even more. Be careful not to "find" great cancer killers in "Vitro" - even orange juice wipes all the cancer out.
Oral Vit C gets nowhere near the serum levels required for a kill (and will kill gut biome in the attempt - good to stop a runny gut!). The hour or two of high concentration during and just after the drip is the "killing zone" - by 6 hours it is all over even though quite a bit of ascorbate is still around (it is after all a natural thing found in the blood). The better our immune system, the longer we live.
Mmmm ... But I am using 25 grams Ascorbate per hour, or 50 grams over 2 hours (for a bigger kill), which is an order of magnitude more concentrated in the blood. It would be nice if it did work orally, as setting up the IV is a bit of a hassle and adds to the expense (and especially adds to the politics).
Look on YouTube for DHAA - tells you how to make it and the plasma concentration you can reach. It's very good and Doug Kitt seems a good guy. I am looking for 250umol for as long as I can sustain it over 3 days
Now on my third run with Xtandi, 12 months on first, 5 months on rechallenge after first chemo, and now 4 months and still going on rechallenge after 2nd chemo.
I take the 4 capsules before bed, so no side effects. Recently brought PSA down from 48 to 3 in 4 months.
Any scan will be enough to do the staging of your cancer given the high PSA. The Axumin scan is covered by Medicare and it has a higher detection rate than a bone scan or a CT scan.
For hormone sensitive metastatic PC the standard of care is ADT (lurpon or similar, or surgical castration) plus zytiga (abiraterone) or chemo (docetaxel) . There is not difference in outcome between ADT plus abi or plus chemo.
You may also consider to try lupron or surgical castration and casodex and see what happens with your PSA. If there is not a good response you could start abiraterone.
Tango- Weren't the studies indicating the benefits of Zytiga or Chemo, along with ADT, for "newly diagnosed patients" and for those with "4 or more bone mets"?
ADT plus chemo offered an advantage in patients with 4 or more metastases. My understanding is that ADT plus Zytiga/prednisone is effective whatever the number of metastases.
If you look at paragraph 6 of the article you provided, it indicates that meta-analysis showed NO benefit with Abi or Chemo, in combination with ADT, for those with low volume disease. I believe low volume refers to those with less than 4 "bone" mets. So- with the added side-effects and increase chances of heart and BP issues, my doc decided to stop giving me Abi over 2 years ago. I was dx 7 years ago and was on ADT INTERMITTENTLY for the first 5 years (usually taking Abi too). For the last 2 years, I have only been taking the ADT (Lupron). My doctor is willing to give me Abi, but, at present, I am following her recommendation and am not taking the Abi (Zytiga).
Thats one heck of a long run...how do you generally feel? There are lots of options...TA will give you the best. Ive been on an effective steroid blocking drug called abiraterone combined with the sterol booster prednisone...for me its been a godsend...personally a lifesaver. I was exponential in my PSA at Dx and heading downhill fast. I think its better you're high PSA...suggests little celline mutation. You should be a good candidate for either abi (xytiga) or xtandi with ADT concurrently.
Dont be alarmed..I think your an excellent candidate for these modern PC drug treatments not to mention the modern chemos which ive not been yet prescribed.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
What next??
With good Zytiga response, do I really need Lupron for adjunctive ADT pre-Brachy?
What do we do now?
Making the Best CHOICE for Daddy. What to do next.....
