My trial has begun - initial update - Advanced Prostate...

Advanced Prostate Cancer

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My trial has begun - initial update

HopingForTheBest1 profile image

Day 1 Aug 12 - At Weill Cornell had infusion of Ac225-J591 + Keytruda + started daily 160mg of Xtandi.

Day 8 - had 1st weekly meeting with trial's Principal Coordinator. No issues and no side effects so far. Next weekly appt cancelled.

Day 11 -oh my god, what is happening? Experiencing severe side effects. Fever as high as 103. Extreme fatigue. So weak that I slowly dropped to the floor and could not find the strength to get back up for 2 hours. Red itchy rash all over my body. Stopped daily Xtandi.

Day 14 - entered hospital for 5 days. Started in ER where all patients initially start in lieu of getting admitted directly into the overwhelmed hospital with barely any beds available.

Day 16 - finally put in a hospital bed. Being treated for extremely low platelet count of 16, with 2 infusions. Also given steroid cream for rash.

Day 18 - released from hospital as platelets up to a reasonable level of 68. Good thing as a homeless man, no cancer, picked up from the street, was added to my semi private room the night before. Next morning he told the nurse he needed to shower, as he probably had not had one in a long time since he was living on the streets. Boy did that room start to smell. He asked me if I had an extra pair of underwear. Since I was going home, I gave him new underwear, a sweat shirt and sweat pants that my wife bought for me the day before. I also gave him some money. During entire 5 days in the hospital barely had any more than 3 consecutive hours of sleep on any one day.

Day 19- Dr told me that my side effects were from an unfortunate combination of the meds and separately from some kind of an infection I was fighting before entering the hospital.

Fast forward to today, 4 weeks after starting trial. Back on daily dose of Xtandi. Platelets now back to 253. Infection resolved. Fatigue and rash greatly reduced. PSA dropped by 20 percent since beginning of trial. Slowly started back to daily walking and a little in home exercise. Getting better each day. Next Dr appt in 2 weeks, along with next infusion of Keytruda.

31 Replies

What an ordeal and act of generosity. I am glad to hear your doing well and waited to post so you could end it on a high note. Good luck and may things only get better.

Is the reasoning behind ac225 to prime the cancer cells for the check point inhibitor?Turning the "cold" prostate cancer into being "red hot"?

I know there is a trial using luPSMA and pembro for the same purpose with pretty good results....

twitter.com/koshkin85/statu...

That is my understanding.

That is leading edge treatment, hope your immune system reacts accordingly, wish all the best for you

This is maybe far-fetched, but anyway:

I noticed you have BRAC2 and PTEN Loss, but now you are resistant to Olaparib.

Brac2 means that you can't repair DSB - double-strand-breaks, this is the idea behind a PARPi where the SSB leads to DSB. There are two remaining pathways for DSB repair, NHEJ and MMEJ, the latter being a "backup" for homologuous repair.

PTEN Loss blocks the Non Homologuous End Joining, NHEJ, that leaves one pathway, the MMEJ. pubmed.ncbi.nlm.nih.gov/297...

MMEJ is controlled by a gene called POL Theta, if you also block this one the cancer cells are defenseless.

D'Andrea at Dana Farber found out after screening of thousands of compounds that the old antibiotic NoVoBiocine blocks POLTheta, and that a combination of Olaparib and NVB is synthetic lethal even for those who have acquired resistance like you.

DB will launch a trial. NVB is FDA approved. The National Cancer Institute will provide NVB in the correct dose to Dana Farber.

The Weill Cornell leading scientist in your trial probably have very good connections to Dana Farber.

Maybe suggest to have a trial arm for prostate cancer patients with BRAC2, being now resistant AND have a PTEN loss - NHEJ deficiency.

Nothing to loose - and makes sense...........

Be aware that the company Artios in Cambridge also launched their 588 POL Theta inhibitor for exactly the same purpose in June -21, but this will take much longer time.......

This is maybe far-fetched, but anyway:

I noticed you have BRAC2 and PTEN Loss, but now you are resistant to Olaparib.

Brac2 means that you can't repair DSB - double-strand-breaks, this is the idea behind a PARPi where the SSB leads to DSB. There are two remaining pathways for DSB repair, NHEJ and MMEJ, the latter being a "backup" for homologuous repair.

PTEN Loss blocks the Non Homologuous End Joining, NHEJ, that leaves one pathway, the MMEJ. pubmed.ncbi.nlm.nih.gov/297...

MMEJ is controlled by a gene called POL Theta, if you also block this one the cancer cells are defenseless.

D'Andrea at Dana Farber found out after screening of thousands of compounds that the old antibiotic NoVoBiocine blocks POLTheta, and that a combination of Olaparib and NVB is synthetic lethal even for those who have acquired resistance like you.

DB will launch a trial. NVB is FDA approved. The National Cancer Institute will provide NVB in the correct dose to Dana Farber.

The Weill Cornell leading scientist in your trial probably have very good connections to Dana Farber.

Maybe suggest to have a trial arm for prostate cancer patients with BRAC2, being now resistant AND have a PTEN loss - NHEJ deficiency.

Nothing to loose - and makes sense...........

Be aware that the company Artios in Cambridge also launched their 588 POL Theta inhibitor for exactly the same purpose in June -21, but this will take much longer time.......

You posted a very detailed and technical response. For me to suggest opening a trial arm sounds far fetched and time consuming. Also, it is hard for me to fully understand your info. What is your background?

I understand your reaction very well, it is far fetched - to a high degree.

On the other hand, DF will soon launch a trial addressing patients with BRAC2 being resistant to Olaparib. (BRAC2 patients are primarily Ovarian, Breast, Pancreas and Prostate. )

If you read this press coverage from DF Andrea explains the background: dana-farber.org/newsroom/ne...

Here is another article explaining the background in plain English from Forbes:

forbes.com/sites/williamhas....

(Dana-Farber is already launching a Novobiocin trial that will test its effects in cancer patients who are BRCA1/2 deficient and PARP inhibitor resistant. )

Regarding my background I am not a MD so you must fact check my understanding.

Maybe - and that is only maybe, that those who are running your trial would be interested in suggesting a trial arm for pCA to DF with your mutational profile.

Obviously my initiative can be regarded as not only far fetched, but out of reality - and then merely bothersome - sorry if that is the case.

When DF launches their trial I will see if pCA are included and then come back with information regarding eligibility criterias.

Whoa! What FUN! Not!

Keytruda can cause an autoimmune reaction, especially coupled with the cell killing from the other meds, Glad you're recovering. Beautiful charity for the homeless man.

I believe it was some kind of sign that by helping him will also somehow help me.

If you are Christian, Matthew 25:31-46 is relevant. If you are Jewish, there is a midrash that the messiah wanders the world as a homeless man until such acts sufficiently prove our worth.

Love it. 😀👍

podsart profile image
podsart in reply to Tall_Allen

I am impressed with the extent and diversity of your knowledge-Baruch Hashem

Great post and I like the way you ended it upbeat. IMHO getting back on the Xtandi was a really good choice. For some of us Xtandi can be trying ( can you say Xtandi zombie yayahahahaya) but for many Xtandi works near miracles in giving you extra months - years . Please keep us updated as many may eventually follow in your tracks to differing degrees. Your experience input would be invaluable. Good luck on your interesting trial.

Thank you warrior 💪💪💪❤️❤️❤️

Good luck. This looks like a great trial that throws the kitchen sink at it. I think it is the most intense treatment plan / trial I have seen. I hope that it works for many many years.

As do I my friend. 👍

I am really pleased to read about the progress you are now making. It is wonderful news that things are on track with the clinical trial. I hope the progress continues.

It is a wonderful post. Good luck.

Hi, I been on this trial combination of drugs for 12 months, daily dose of 4 x Xtandi together with 3 weekly infusion/placebo of Keytruda Main ongoing side effects are fatigue, brain fog and some moderate pain in bones, but overall its manageable but seems The pattern is some good days and some not so good just go with the flow

If you need to rest then rest

Some exercise is manageable but not what I could manage

I also changed my diet completely to a non red meat non diary with plenty of organic vegetables

My medical team are please with my results so far so good

@

Curehunter profile image
Curehunter in reply to Sebara

What sort of results have you got after a year on the trial if you don't mind me asking. Thanks.

Sebara profile image
Sebara in reply to Curehunter

I should have mentioned I'm on Eligard every 6 months as wellPre trial and after radiation my PSA was a high of 177 and rising very rapidly PSA now undetectable and has been since commencing the trial.

My blood results are also all now within normal range so off blood pressure meds plus cholesterol meds

Weight has increased I gained 7 kilo over the 12 months due to lack of exercise and sweet tooth

Curehunter profile image
Curehunter in reply to Sebara

Thanks for the update and hope you continue to benefit from this combo for a long time.

Thanks for relaying your experience. Not for the faint of heart. And your goodness prevails.

Thank you for sharing with us and the homeless man!

Thank you for your post and for your generosity for others . God Bless!

Wow…what a journey.

Thanks for the update. Pretty rough going there at first. Can’t believe how long you had to wait for a hospital bed. I’m glad the complications have resolved and you are able to continue. Such kindness you showed to the homeless man. I believe there was a reason he ended up in your room. God bless you

Holyshit..........

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 09/12/2021 11:10 PM DST

Batman.....

Woww..., but hope it keeps dropping 🤞

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