Morning hookworm med(fenben) & BIRM vacation....

[greatjohn]

BIRM & fenben (Panacur) follow up...for those interested in these (off the path) protocols.

**my favorite way to take my hookworm med (like dogs) in my food. Especially great in peanut butter with a smear of organic mixed berry preserves.

well...I had just started the "hookworm" a few days before last blood work..and scan. Both came back a little NOT what I'd like to see. Slight uptick (growth) it appeared in one already seen bone met...and slight growth(enlargement) in one gland....already seen. Most stable or shrunk. The PSA has been going up up and away...but in very slow .3 or so increments....

XTANDI ADDED TO LUPRON

6/22/18 3.390

6/29/18 1.550

7/13/18 1.150

7/27/18 1.080

8/10/18 0.963

9/14/18 0.895

STARTED BIRM (APPX)

10/12/18 1.010

11/9/18 0.888

12/7/18. 1.130

01/18/19 1.52

02/12/19 1.6

02/22/19 1.5

03/22/19 1.67

04/26/19 2.07

STARTED FENBEN (HOOKWORM)

05/24/19 2.39

06/05/19. 2.5

06/21/19 2.69

I'M GOING TO BE POSTING THIS TIMELINE (FOR THE WORLD--THE GUYS ON HERE WHO'RE INTERESTED) ON HEALTHUNLOCKED PUBLICLY .... AND my decision to take a BIRM break for a while and see how I feel/how PSA does in one month. I've been off over a day...at this point.

**I did a liquid biopsy (blood) for Foundation One(as oncologist said I did not have any tumors that were large enough to biopsy)...and I'm still waiting results.

I am finding an hour in my zero-gravity massage chair every afternoon...takes me "away"....I want to see if this takes the place of BIRM...which is a LOT more expensive. I was hoping for tests results showing it's efficacy against cancer...but in 9 months...haven't seen much of anything promising. Still not totally giving up on it. The Hookworm protocol I started more recently...I'm going to give it a bit longer. (and it's cheap)...and I have felt good since starting it. That and the massage chair (Mr. Osaki) and I'm like a new person...energy, pain...and ability to cope with the excessive South Florida heat!

Happiness to ALL!

gJohn

[Magnus1964]

Good luck John, keep the faith.

[greatjohn in reply to Magnus1964]

Did you ever find out what the mystery drug you were on. I'm referring to the study you posted about a short time ago. It was Xtandi and?

Curious...and I'm hoping my indomethacin (just started) will boost Xtandi's efficacy.

gJohn

[Magnus1964 in reply to greatjohn]

I am still on the trial and I think Lilly is still running new patients. I am the last man standing here at this facility.

I will ask on Monday.

Send me a message through the chat feature on this forum.

[Dalph87]

Best wishes, John, I hope the PSA will start going down.

[NPfisherman]

Thanks for posting....this was on my down the list trial when things go south.....keep us posted....a month is a bit early.....more interested in 2 more months down the road....Hope this works for you... a positive bark sent your way !!!!

Fish

[greatjohn in reply to NPfisherman]

it's another reason I dropped the BIRM...want to see what the "Joe" protocol is doing.

J.

[SeosamhM]

Thanks for sharing this information, GJ! If there is anyone that is very positive about alt-treatments but entirely objective about them, it's you!

I'm very sorry to hear of the PSA and tumor crawl-up, but I am happy to hear of your energy and resilience! Keep it up, and remember that sweating in the oppressive heat is...er...good for...well, it keeps the pores open and gives you that youthful glow! - Joe M.

[tom67inMA in reply to SeosamhM]

Actually, Florida heat might help. From ncbi.nlm.nih.gov/pmc/articl... (which is a breast cancer paper, but I don't see why this wouldn't apply to most cancers)

"Indications that temperature manipulation may be a potentially effective treatment strategy to enhance anti-tumour immune function are supported indirectly by findings from several preclinical and clinical studies showing that mild systemic whole body hyperthermia can potentiate the anti-tumour effects of various cytotoxic agents and can stimulate the immune system "

[SeosamhM in reply to tom67inMA]

That’s actually very interesting and relatable, T67, because it’s exactly what I do every other day, i.e, try to simulate a temporary fever by sitting in a steam room. It’s my rather odd treat after lifting a bit and walking stairs - seeing how long it takes to go from the initial wave of warmth and relaxation to steamy misery.

I’d have to say that (after a nap), I feel good - more limber, more energy.....It helps psychologically, too, fantasizing that I could burn this sick out. The more the better if it wakes up my lazy immune system.

Thanks for the post.

[tom67inMA in reply to SeosamhM]

I'm the kind of geek that can't just say "I feel cold". I got to wondering why I felt cold so frequently this past winter, and was especially curious if it was better to tough it out, or throw on an extra layer, grab a blanket, and turn up the heat.

Keep up those cancer killing fantasies. I have them too in the form of tumor pain being the last dying scream of the cancer cells.

[kmack57]

Thanks for sharing John. I did an abbreviated BIRM run and it did't seem to do much for me either.

Kevin

[greatjohn in reply to kmack57]

I really felt like it did a lot this past few months to help lighten the pain of being on Xtandi with Lupron....

My massage chair seems to be taking it's place.

I'm not giving up on it entirely...but felt like a break from doing it thrice daily (with it's questionable taste) would be good.

gJohn

[kmack57 in reply to greatjohn]

I've been on Lupron and did six rounds of docetaxel ending in December, 18 that gave me about 6 months before mys PSA went up from .9 to 3.1. Did new scans and found new mets in my back. Yesterday I started on abiraterone and had day 1 infusion of cabazitaxle (6 total). Might go back to BIRM if my energy drops.

[greatjohn in reply to kmack57]

good luck home the Xgeva does the trick for a while. I'm feeling like I'm nearing the end of Xtandi...after just one year....but hoping to get to the end of the year on it...before having to start a new "regimen" and the side effects that it will bring.

gJohn

[HOPEFULSPOUSE]

Thank you for the update and sharing all your info.

My husband is also on Joe's protocol, week 7. He does have more energy which he started noticing around week 4. But nothing tangible in terms of PSA reduction yet. He had a UTI leading up to the last PSA so sadly it showed an increase. We have been encouraged by reading that FENBEN increases the efficacy of taxanes - he's on cabazitaxol - on so figures he'll give it 20 weeks.

As far as BIRM, he started end of November, December switched to the industrial strength. Noticed an initial uptick in energy which tapered off. He stopped it about a month ago - mostly because he takes so much. He started back last week I think but from the amount we still have left I don't think he is doing it regularly like he should.

[Litlerny]

John,

I tried the BIRM once. It was very expensive, had a horrible taste, and I doubt it did anything. I am also trying Fenbendazole. It’s much cheaper, and comes in a box with 3 little measured serving packets. I do 3 days on and 4 days off, putting it in oatmeal or shredded wheat. Too early to tell if it’s doing anything positive. Also, no observable side effects...except that I lifted my leg to pee the other day, and chased the mailman’s little truck down the block. Woof!

[greatjohn in reply to Litlerny]

yes...that's the new protocol I'm doing for about 5 weeks now. Can't wait to see if it has any affect. By the way, the BIRM ....I started taking about 4 months into taking Xtandi...I was just about to have to cut my dose of Xtandi in half...the side effects were so bad. BIRM made them diminish by 80 to 90 %. I've been on Xtandi now over a year.

John

[greatjohn]

it's worse than that...it's 1/2 of the full thing I ate...I had two halves of a ciabatta roll toasted with BUTTER...then peanut butter...then the "dainty" smear of fruit......LOL.

[greatjohn]

I started shaving my heat at 37. My first time visiting (for a whole month) Seattle...it was during the "Grundge" days. That same time I got my first tattoo...what wonderful memories....my beard now...sort of grows in, but looks raggedy and spotty...I can only get the goatee and mustache to show up enough to do anything.

I was going to write you about taking a hiatus from BIRM. I just decided to see if I still get the horrible pain that went away after I started it. I saved a little so that if I need it...I can start and then my new bottle will be delivered before I run out. I like to be prepared.

John

[HOPEFULSPOUSE]

That is very interesting about BIRM and chemo side effects as my husband had no hair loss during the first 3-4 cycles of chemo - and then did have some loss which I see now may correspond to when he stopped taking it. That is likely the motivation he needs to start taking it again.

[Trecento]

Best wishes on your new protocol. We also are interested in joining the Kennel Club. The fenbendazole arrived today (canine sachets), and we await the Perfect E. (The more exotic supplements take a while when they have to be ordered from overseas because not readily available.) Have ordered hemp seed oil locally, which is rich in vitamin E, but obviously cannot replicate the effects of the CBD Joe used. My husband is still taking BIRM, but like you will likely discontinue when commencing the new protocol. His integrative care doctor also has him on a few other supplements, including curcumin. Thanks again for posting - really hope it works for you and others.

[greatjohn in reply to Trecento]

I was thinking I should keep doing both...but I feel like if the protocol with fenben works...I want to know it. Easier to be sure by dropping the BIRM for a while.

gJohn

[greatjohn]

sorry, just noticed. Yes..I'm just doing a single 1 gm packet once a day...Mon/Tues/Wed...and then WHEEE...off the rest of the week.

[greatjohn]

What is DCA?

[greatjohn]

I wonder if Metformin has the same affect as the DCA ....it's a type of glycolic inhibitor, I think.

I'm taking it currently.

j.

[j-o-h-n]

It looks like a Pygmies' pizza...

Good Luck, Good Health and Good humor.

j-o-h-n Wednesday 06/26/2019 7:24 PM DST