I'm hoping my new hookworm treatment and the BIRM will kick in soon! I need to turn the trend around. My PSA keeps moving...only moving in the wrong direction.
2.39 up from 2.07. (I have the PSA tested monthly)
AND, my latest Axumin Scan showed a couple of lymph nodes had grown slightly and a spot on my pelvic bone had grown a little. Everything else seems to be NOT showing up....but I'd sure like to have a PSA like so many of the folks I read about on here..of...
.3 or less. My lowest still was .87 (just after Chemo)
I was worried the oncologist was going to suggest a new regimen. I'm on Lupron, Xtandi and Xgeva right now. They are bad enough. He said we would keep on the same path....he is ordering a Liquid Biopsy from Foundation One because they said my old biopsy didn't have enough to work with. The oncologist (and I guess this is a good thing) said the 2 lymph nodes that are still showing aren't big enough to be sure they could get a biopsy from them...
Can't wait to see what kind of monster I have growing in me!
Happy Memorial Day Weekend ! ! !
gJohn
Written by
greatjohn
To view profiles and participate in discussions please or .
We are now on similar treatments, in terms of the standard stuff. Mine is Lupron, Zometa, and Xtandi. Just before starting Xtandi 2 1/2 years ago I had about 10 "hot spots" in various bones and lymph nodes per a Ga-68 PSMA PET scan. Adding Xtandi took my PSA from 95.0 back down to 1.2. My PSA has slowly gone up over the past 20 months from the Xtandi nadir of 1.2 to a current 3.2. My monthly tests have sometimes bounced up or down 1,2, or 3 tenths during that slowly trending time. My gut tells me that the Xtandi is still working, for the most part. I may not look to doing a complete re-baseline of everything until my PSA gets back up into the 5-10 range. Then do some imaging, perhaps look for something suitable to tissue biopsy and genetically test, look into whatever clinical trials may then be available, etc., .... and then decide what treatment(s)/trials might be next. (Easier to say than to do. It's constantly in the back of my mind, and often breaks out as come-and-go anxiety, even with PSA numbers in a relative low range.) I keep telling myself that I'm one lucky dude to still be alive and functioning as well as I can, considering that I had a PSA of 5,006 at original diagnosis 5 1/2 years ago.
yes, Charles...and (like you)it was appx 5 1/2 years ago I started this macabre journey.....but My PSA never got higher than (I think) 24....because I was SOOOOO on top of it for years before. That's why I'm still reeling that I went for 0 to 60 in 5 seconds with this cancer thing ! ! ! (Gleason 6 to Stage 4 castrate resistant in just 2 years).
I also share appx the same "low" you mention...I DID get down just under 1.0 for a brief period just after my weeks on Taxotere (chemo). Other than that I have been above...it's inching up fast enough now (even on Xtandi) that I will be at 5.0 at this pace in another 4 or 5 months....unless I get a down tick. Hoping to add Indomethacin to the mix...but my oncologist said he "could not" prescribe it...so I am going to try with my regular doctor this month. According to Nalakrats and some research he's pointed out ....which my oncologist did NOT know about...i't supposed to boost Xtandi's usefulness. You might want to read up about it.
Most general practitioners will know of indomethacin as a painreliever for arthritis. Its used occassionaly as a second or third option. Its a non steroid anti inflammatory not unlike Ibuprofen or Celebrex. Its risk profile is not dissimilar to them. It has few bad common side effects but some of the less likely ones need watching (blood pressure, renal failure). Recently my usual GP moved practice to a way off suburb. Her replacement would not prescribe it and was a "tick the box medicine" kind of guy opposed to off label use of drugs. I tracked down my old GP and she readily prescribed it, knowing my record, knowing the drug, and telling me what to be careful about. I now have a new local GP. I don't think oncologists are comfortable prescribing "non oncological" drugs. They would say: "that's a NSAID and should be precribed by your GP who knows your general health profile better than me." I actually had a discussion with my oncologist about this and she said it seemed like a harmless enough drug, not likely to cause harm, but she couldn't recommend it. Fair enough.
I showed my old GP an abstract of one of the papers showing the role of the AK1C3 enzyme in enza and abi resistance - just the last few sentences and then said that indomethacin is a specific inhibitor of that enzyme (important because there are other similar enzymes that we do not want to inhibit). "Worth a try" she said.
I haven't tried it yet because I am half way through a BAT rerun but I will use it after reintroducing my anti androgen.
Worrying unfortunately doesn’t help if it did I’d be cancer free for sure. Lol. You seem to be in capable hands. So just Keep trying to enjoy each day my friend. That’s all any of us can do.
luckily I stay busy and don't actually "worry" too much. "places to go, people to see"...LOL...Only EVERY TIME I get a PSA or a pet scan done...and I get my customary results...which are (always) NOT what I want to see...LOL. My PSA after this Pet Scan coming in at such a small tick up...actually was BETTER than I was expecting. I'm celebrating that. I know it "could have been worse". And ALWAYS thankful that I have no pain except the pain of Lupron, Xtandi and Xgeva (which is bad enough)...
Have a great Memorial Day!
gJohn
p.s. this time the oncologist's assistant keep pressing me ...about pain in my hip from the one bone spot that showed up on the scan...like she couldn't believe I didn't have pain...but (thank god) no pain there yet...and the Oncologist confirmed it was small.
damn. I missed out on the private jet. I gotta look into one. I think they might be "off" budget...LOL. I've actually considered moving to Minnesota to be close! ! ! If I make it to 65, I think that's the cut off, I can change my Medicare HMO to a Medicare Supplement(like the one our accountant has)...and then I can go ANYWHERE and be covered. It's funny....the Mayo Clinic IS my dream. Colder climates ARE my dream also...I'm 1000% tired of the year round heat of South Florida. It gets relentless (especially with the added perk of Lupron and Xtandi and the requisite HOT flashes).
Is good that PSA isn't doubling. I ended up with a met in my right eye. Having radiation to kill it but it will affect my vision. Want to try hookworm treatment. You got meds from your vet or online?
as per Joe's Cancer Blog (you can google Joe's cancer blog and hookworm and it will come up..,
I am using it for appx 2 weeks every day. and after that 1 gm packet per day for 3 days of the week...and off for 4 and then repeat.
I'm still in the first 2 weeks...so I can't know if it's going to help with anything, but it's certainly not hurt. Very easy to mix and drink in water .....doesn't taste at all...but it doesn't mix well, so you might have to add more water and stir and gulp. Or this morning I did it the way the recommend for your dog ....in his food. I ate it in my cereal. I ordered a bunch at PetMeds and they throw in a few bones for you to chew on (or your dog)....LOL. Sparky is happy when he sees the box (I've ordered twice now...a small order and then a large)
I know we're all grasping at straws, but this is a very interesting add-on to diet in terms of what Joe says has happened to him and other people. Not everyone. It's like BIRM...it has good publicity, but I'm waiting for the BIG turn around. I do know the BIRM helps with fatigue and side effects of Xtandi and Lupron.
good luck with your eye...that's very scary. I keep looking for silver linings and things to be thankful for....so I guess You have to be thankful it's only one eye.
Glad to hear you’re having a crack with the ‘bendazole... so far, I have found mebendazole does no obvious harm, but alongside the ADT, I can’t tell if it’s doing any good either!!
My youngest Son has talked me into joining him in the US in late July for some walking in Yellowstone - your post has me wondering all over again why I’m leaving lovely cold Melbourne for some American heat, especially since I have a Zoladex shot a week or so before flying out... must be the ADT affecting my reasoning!!
Really hoping you get at least a flat reading next month, then a strong downwards trend....
The elevation of the Yellowstone Plateau is about 2400 meters, so it doesn't get too hot in the summertime. Average temps for July are about 73 F high and 39 F low. Should be lovely even by Aussie standards. Enjoy!
yes...it will be a mostly cooler adventure for us...coming from South Florida where in August it's HOT HOT HOT...and 1000% humidity ....almost anywhere is better!
I've read that fenbendazol pancure the one for dogs or cats has the inactive ingredient parabens which for hormonal cancers is bad, and that I the fish antiparisitic you can get on Amazon and it doesn't have parabens.
Parabens is in a lot of stuff, toothpaste, creams, etc. Where did you read it was bad for hormonal cancers? I know of some general concerns, but haven't seen any data.
In a Facebook group of Mclelland (how to starve cancer). But not really "reliable" source.... Since the fish fenbendazol is the same stuff without parabéns, why not stay on the sure side.
Besides, Mclelland approach seems interesting blocking metabolic pathways with different off-label drugs, antiworms and supplements.
plus....I used a magnifying glass and searched all of my brochure and box with the Panacu C and could NOT find ANY list of inactive ingredients...then I went to Mecca (lol)~~the internet~~ and could NOT find any inactive ingredients listed for it. I did finally find something about it having corn starch or something. NOTHING about Parabens. Still want to research fish drugs...It might make me a better swimmer....LOL
if you have a list of the "whole" ingredients ...you can forward, I would love to see it. Plus, Like above I did a search for it as an additive and it's in almost everything....so it sounds like we're doomed....or, as I like to say (from my Mom)
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.
Radiate just the prostate when there is extensive lymph node involvement?
Pet scan on June 1st
New Member, diagnosed September
Question, each month with rising PSA, when do I do a pet scan 
Good news from visit at Mayo
