Immunotheraphy

[Hotrod65]

All Good today, PSA 0.010 no change in 4 yrs, all bloodwork normal, spoke with Doc, indicated I'm out of Classification of Complete Clinical Remission Short term and now in long term ,over 5 yrs currently..#47 infusion today of Pembrolizimab ending with #50 in November, then I will be off treatment completely with annual Scans...still a patient for life...Whatever it takes.!, Livestrong Warriors .

[Magnus1964]

keep up the good fight. Glad to hear you are doing well.

[Blair77]

Hi,

I know you have indicated that your genetics showed a high mutation burden in your pc did it show any other markers that they feel contributed to your response?

[Hotrod65 in reply to Blair77]

I have a DNA Polymerise Epsiliom..POLE mutation that exhibits an Ultra Burden mutation...seen in alot of Endometrial cancers that have responded to checkpoint inhibitors Blockade immunotheraphy, very, very rare in Prostate cancer, but I have it.

Other Mutations identified are:

ATM

PTEN

MSS

TP53

VS4-11.

[Hidden in reply to Hotrod65]

How were those mutations identified? What sample were they analyzing?

[Hotrod65 in reply to Hidden]

Foundation Medicine CDx Panel, tested my surgically removed prostate pathology.

[Hidden in reply to Hotrod65]

This is such a great story.

Do you know how much of a sample they needed from your renegade prostate to perform the test?

Also how much does it cost to get that test done?

[Hotrod65 in reply to Hidden]

I don't know for sure how much pathology is needed for the CDx Panel?, But I can put you in touch with a contact at Foundation Medicine?, Also, when I had the test done 4 yrs ago, I got a bill for about $4k..I gave it to my Oncologist to look into and never heard about it again..lol, I'm a patient Advocate for Foundation and they got it all back from my travels and speaking supporting their Foundation..I have heard Medicare does cover it now that the testing is FDA approved.

[tango65]

Fantastic. Congratulations.!!

[AlanMeyer]

Fabulous response. I always love it when anyone beats the disease like this but it is especially exciting when someone does it with a new therapy that few patients have tried and more may benefit from - though I understand that only a minority of PCa patients have benefitted from Pembrolizumab so far.

Best of luck with your continued, and then discontinued, treatment.

Alan.

[Chugach]

I’m right behind you (well a few years) but getting my pembro again tomorrow and last check also 0.01. Dragon is back in the cave!!!

[lardoz in reply to Chugach]

Hi, How do you get Pembro? Are you in a medical trial? Thanks in advanced

[Hotrod65 in reply to lardoz]

Genomic Sequencing of pathology, indicated I might be a candidate, my MO obtained the drug from Merck as experimental case under compassionate Care.

[Chugach in reply to lardoz]

Genetic testing- I was found to be MSI-H, microsatellite instability high. This qualifies me for Pembro. It is SOC for those with the right genetic markers, not a trial.

[tallguy2]

Congrats on the great news!

[Haniff]

Well Done 👍

My best to you

Haniff

[Lettuce231]

Fantastic news, keep on fighting 🎖

Phil

[tom67inMA]

I'm currently on Atezozumulab (not sure I spelled it right) plus chemo for NEPCa, and hoping it kicks the intraductal to the curb as well. PSA has been <.1 for over a year and less than <.01 for almost a year, all achieved prior to immunotherapy.

Still waiting for biopsy genetic results. Germline I have a BRIP1 mutation of unknown significance. Other BRIP1 mutations are pathogenic, but they don't have enough data on my specific mutation yet.

[mikiesan]

ALRIGHT!!! GREAT NEWS!!!

[jaybojammer]

Outstanding!

[Wilbur77]

Great news Hotrod. Fantastic and keep up the fight.

[ctflatlander]

Congratulations hotrod! What was your PSA prior to starting Immunotherapy?

I'm driving a black 37 Ford pickup all stock flathead except for duals. Bob

[Hotrod65 in reply to ctflatlander]

Never went above 10.5...Gleason 9 4+5..but went from undetectable 0.001 to 10.5 in 10 months.. aggressive from biopsy all cores positive.. Adenocarcinoma that mutated early on to Neuroendocrine carcinoma small cell differentiation...no response from standard of care..had it all., Lupron, chemo and robotic surgery..told me get affairs in order might see 3-6 months if lucky... Genomic Sequencing of my tumor showed possible response with checkpoint inhibitors Blockade...I'm still here 5 yrs later.. currently in long term Remission NED...I'm the miracle poster boy for MPC4 /Immunotheraphy, Keytruda is not FDA approved for PC, surprised your insurance is covering it for you?, I had to get it from Merck under compassionate Care/ Patient Advocate filed thru my Oncologist , reapply every year for free drug..thank God.

[Hotrod65 in reply to ctflatlander]

1923 Ford T bucket Roadster, 6:yr build, and several motors, this one I don't plan to blow up...lol

[henukit]

Excellent results, mate! Also, the information from trailblazing cases like yours is invaluable. Let's medical and patients community know how important is genetic profiling and subsequent targeted therapeutic approaches. Be well!

[jfoesq]

Way to go!!!

[Hotrod65]

Nal, I started out 4 yrs ago with 3 week infusions, then went to 6 weeks and now 12 weeks...just had # 47 yesterday..they want me to have 3 more ending in November this year for total of 50, which will make it a full 5 yrs on it.

[dockam]

Yay and Congrats, always so wonderful to hear a success story on HU

[Hotrod65]

I might add , my current success with checkpoint inhibitors has not come without cost...I have Adrenal Insufficiency/Cortisol controlled with Prednisone 5 mg daily, this in turn has damaged both my optic nerves and created some vision problems, one corrected with a recent Vitrectomy that I'm still in recovery mode, I have significant drops in my blood sugar level and need to be monitored as well, I carry a syringe with High Dose Steroid everywhere I go and need to inject if needed..so far so good...bottom line is I'm still fortunate to be on this Earth.

[j-o-h-n]

Hello Hotrod...... reminds me when I used to have a hot rod and a nice car too.... As I've mentioned many many times I'm taking Pembrolizimab (Keytruda) for my lung melanoma and it is working (so far)...

So -

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 03/07/2020 1:13 PM EST

[Hotrod65 in reply to j-o-h-n]

John, suffice to say neither of us would be here now not for the advances in Targeted precision therapies, continue on your journey to living..God Bless...what did you have for a car?..my hobby and expense that keeps my mind off Cancer.

[j-o-h-n in reply to Hotrod65]

a 1965 Corvette stingray - hardtop (Milano maroon)..... (Stolen from me),,,,,

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/08/2020 5:53 PM EDT

[Hotrod65 in reply to j-o-h-n]

Sweet..love the old vets..sorry it was stolen

[j-o-h-n in reply to Hotrod65]

You're sorry?... I cried like a baby... I figured it's being used as a taxi in Tijuana Mexico.... Ole!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/08/2020 6:27 PM DST

[Hotrod65 in reply to j-o-h-n]

I imagine you did..I know I would still be crying!..lol...time for another.

[j-o-h-n in reply to Hotrod65]

I'm thinking about a 1974 Yugo ragtop.....Candy apple red with a wide white stripe running down the middle.... Envy of all............

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/08/2020 6:37 PM DST

[tom67inMA in reply to j-o-h-n]

I used to have an orange Chevette that I autocrossed a number of times. Very light weight due to the rust holes.

[j-o-h-n in reply to tom67inMA]

Now I get it..... orange Chevette.... which you used to peel away from stop lights......Wowser Wowser....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 03/10/2020 7:09 PM EDT

[tom67inMA in reply to j-o-h-n]

70 hp didn't allow for much peeling out. If I dumped the clutch at high RPM it might chirp the tires. Except for that one time I dumped the clutch on a freshly sealed parking lot on a warm day and laid down a 40 ft strip of rubber

[Hotrod65 in reply to tom67inMA]

Badass....lol.....425 hp blown...1700 lb car..you can imagine..I have to be real careful.

[tom67inMA in reply to Hotrod65]

I can imagine, I've seen the videos of Mustangs at cars and coffee

[j-o-h-n in reply to tom67inMA]

Shame on you.... you missed my connection with an "orange" car and "peel" away.....

P.s. I remember those Chevettes, I have one now.... I use it for a door stop......

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 03/11/2020 5:16 PM EDT

[tom67inMA in reply to j-o-h-n]

Oh I got the pun immediately. The resulting groan wasn't loud enough to be seen in my reply

[j-o-h-n]

etsy.com/listing/757520171/...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 03/07/2020 1:19 PM EST