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Posted 4/19/2019 10:57 AM (GMT -5)
Just got back from Dana Farber. It has been 3 weeks since may last visit. During that period I have stopped taking Zytiga and have weaned of Prednisone.

Is felt weird to be routing for my PSA to rise. It did. From 0.82 to 1.82. Based on this I signed the consent forms for the Study.

So on Wendesday I will start with a new bone scan, MRI and more blood work. If that works out, more blood work, a biopsy ( I can not believe I have volunteered for three of them). Then the random draw. Is it enzalutamide solo or with CPI-1205 which is the inhibitor being studied. My MO and his team are excited for the opportunity for me to recieve this treatment. Me being a half glass full kind of guy, if I receive the study drug I am thinking my glass will be full.

As a side note, my blood pressure dropped to normal limits being of the Zytiga. I will keep you posted.

Mike
Posted 4/19/2019 5:56 PM (GMT -5)
Mike,
Hopefully you will be getting the new drug. If not you will at least you will be getting Xtandi. Nice thing with that is no meal restrictions and no prednisone.

Good luck!
Posted 5/3/2019 8:53 AM (GMT -5)
A little more information.

On May 16th I will start my in this trial. The day starts with a Blood draw at 0740, and EKGs at 0830 and 1200. After the first EKG I will start taking Xtandi and possibly CPI-1205. The random drawing has not been done yet, and I will not know until this day if I have been selected for CPI-1205.

Prior to starting the trial:
4/24 Blood draw (PSA up to 2.12 from 1.82 in three weeks), EKG, Bone Scan and CAT scan. (Scans indicated that mets are still substantially reduced or healed except for one the L4 vertebrae which appear to be a little bigger - no pain)
5/6 Prostate biopsy - samples for the trial and for future genetic testing. This is NOT the dreaded trans anal biopsy that we all have endured. I will provide details afterwards, but it will be performed while I am in an MRI and medicated similar to a colonoscopy.

It is going well and I am looking forward to participating either way. Lots of tests and lots of scans in the first two months. I will keep you all posted.

For those of you who follow my postings, thank you. Another little milestone is occurring this weekend. My youngest brothers daughter is having her first communion this weekend. Tick. Live goes on around us and we must enjoy it.

For those interested here is the website.
https://clinicaltrials.gov/ct2/show/nct03480646?term=prostar&rank=2

Thanks and God Bless.

Mike
Posted 5/4/2019 12:06 PM (GMT -5)
Wow Mike, as I started reading, I thought we are going to be in the same trial... I’m going to be in NCT02555189... that means XTANDI plus ( potentially) Ribociclib.
My trial does not involve placebos, and it sounds like yours doesn’t either... you either get the extra drug or you don’t, is that right?

I’ll start 5/16 or 17th also...

Cheers!
Posted 5/4/2019 4:00 PM (GMT -5)
Kudos to kmclark1 and everyone else who volunteers for a clinical trial. No doubt I am alive today due to clinical trials from the past.
Posted 5/4/2019 6:41 PM (GMT -5)
I second what GoBucks says. Very grateful to everyone who takes part in clinical trials.

Thanks, Mike, for the link to clinicialtrials.gov. Here's a link to Constellation Pharma's announcement, in fairly user-friendly terms, of the Phase 1b results and plans for Phase 2: http://ir.constellationpharma.com/news-releases/news-release-details/constellation-pharmaceuticals-presents-results-phase-1b-portion
Posted 5/11/2019 5:34 PM (GMT -5)

Hello KMCLARK1,

Thank you, from all of us, for helping to blaze a trail ... for others to follow. Blaze the trail, find the path, and leave some trail markers for other comrades to follow.

Very grateful for your leadership in the clinical trials --- I owe everyone who ever participated in a clinical trial a heartfelt debt of gratitude ...

With my very best,
CYCLONE ~ Iowa State University
Posted 5/12/2019 9:17 AM (GMT -5)
So another update. Part of this trial is an optional biopsy. It is my opinion from personal experience and discussions with others that the trans anal prostate biopsy is the male version of child birth (of course we are men and have a low pain tolerance). My hat goes off to the active surveillance guys who under go this every couple of years.

So back on point.

On Thursday I get the pre biopsy phone call. Wait a minute! Its a bone biopsy going after the met in my L4 vertebrae. SO all my mental preparations gone. Another phone call with the trial administrators. Another lesson relearned. Ask about everything in detail. DO NOT ASSUME.

Biopsy went fine. My daughter (a nursing student at UMass Boston, a fine institution, but not is fine as the one in Amherst LOL) takes me to the appointment. By the time the I am ready to go, we are great friends with the nursing staff. This procedure was completed at Brigham and Womens, who work closely with DFCI staff.

So the doctors have to get four cores. This biopsy is CAT guided so in and out. With me in the room, four nurses, two surgeons, and three clinical scientists. Fortunately I am sedated, so the drilling noise is not that bad, and then sedation ends. Ouch. The nurses get on the pain relieve and everything goes well. Two days later and its a fond memory. Little does the nursing staff know that I will be back to two months.

On Thursday, I go end and officially started the the trial. On that day, more EKGs and blood draws. Also I will find out if I receive the drug being studied.

Not really a noble excersice. Besides missing work, I am hoping to take advantage of new treatments and prolong my life. Thanks for the kind words.
Posted 5/17/2019 8:50 AM (GMT -5)
Yesterday was day one.

I was not chosen for the study drug. Had some thoughts about abandoning the study. Being 0-2 is a little disheartening. That only lasted an hour or so. I found out about a day before the my piece of the trial started.

Went in yesterday for day one of the trial. Had an EKG and a long sit down with both my NP and the study nurses and representatives.

Found out a couple things.
-The met that was biopsied was only 1 mm in size.
-Xtandi: those pills are bigger than zytiga, but coated. New issues swallowing them.
-Blood pressure still great.
- Asked about a weight loose program I am going to start again. Medilweight loss. Basically a keto diet. The nurses said go for it but NO supplements, no powders etc.
-Blood work great. PSA climbed to 3.15.
-Set up some time with a social worker just to make sure I keep my head on straight.
-and finally, if the Xtandi treatment stops working I will have the opportunity to obtain the drug.
-There is a $50 stipend. Gave $20 to my 19 yo for ice cream and the rest to my 23 yo for drinks.
- I have another appointment in two weeks for blood work to meet with the team.

All in all a worth while day.
Posted 5/17/2019 6:09 PM (GMT -5)
kmc,
It seems like the guys here never end up getting the experimental drug. The good news is you’re getting the Xtandi. Yep, those puppies are big, but do slide down easy. Plus no Prednisone or meal restriction.

Seems like a great way to spend 50 bucks.

Good luck with everything!
Posted 6/6/2019 8:09 AM (GMT -5)
Another update. Had be Month 1, week 2 visit. Blood work and visit with NP. Liver functions up. Going to need to watch them.

Also the clinical technician for better words was a young man with no answers, ***? My next appointment for Month 2 Day 1 is next week and they have it scheduled for the middle of day. I let him know I needed it moved to either first thing or the end of the day. DFCI is 30 mins at best from my office, and I am using my sick time and vacation to for all the testing they are doing. That will leave no time for fishing, and we cannt have that. Early on, we talked about the schedule, and do to the fact that I am still working full time and trying to run my end of the business, midday's dont work.

2nd round of scans/biopsy coming up in early July.

Thanks for letting me vent.
Your brother in battle

Mike (aka kmclark1)
Posted 6/17/2019 10:23 AM (GMT -5)
One month update. PSA down from 3.15 to 1.73.
Posted 6/17/2019 11:44 AM (GMT -5)
Right direction. Thx for updating.
Posted 6/17/2019 12:00 PM (GMT -5)
Mike,
Seems like a very decent one month response from the Xtandi. Down is good. Let’s see it keep going!
Posted 6/17/2019 4:32 PM (GMT -5)
Next round of tests July 10. MRI, Bone Scan and Biopsy. - Than visit with Dr Pomerantz on July 11. Another Lupron injection. Just wished they could schedule things in the morning so I do not end up being out of the office all day.
Posted 7/12/2019 10:25 AM (GMT -5)
Entering month three. (Xtandi only)
Thursday schedule (7/10)
Left home at 630
1 - Contrast injection.
2 - Lupron Injection.
3 - Cat Scan
4 - Bone Scan
5 - L4 vertabrae biopsy. Home by 530.

7/11
Visit with MO - Scans show no progression but very small PSA rise 1.78 to 1.81. Number bascally the same.

Next appointment on 8/8.

PS I have notice that some my fatigue has lessened since taking Xtandi? Anyone else experience this?
Posted 8/9/2019 2:11 PM (GMT -5)
August 8th MO Visit - PSA down to 1.63. Looks like the Xtandi is working. Next month another CAT SCAN and Bone SCAN. Lots of visits. Hope helps someone down the line.
Posted 8/10/2019 8:51 AM (GMT -5)
KMC,
I'm five months into Lupron/Xtandi and haven't noticed anything other than some warm flashes. Knock on wood and I hope I haven't jinxed my luck by opening my mouth too soon!
Posted 9/10/2019 7:42 PM (GMT -5)
September News. CAT and Bone Scan no change, PSA up 2.06. We will se how October goes.
Posted 10/7/2019 9:43 AM (GMT -5)
October 2.6 trending up. Will wait to perform scans at the end of the month within the Trial cycle. If it continues to rise and I will begin receiving CPI-1205 in conjunction with the Xtandi. Also in changing jobs, had to make some decisions regarding deductibles. This caused me to start asking about coupons and such for the Xtandi. Push comes to shove, and Dana Farber is know doing mail order to my house for $0.00. Perfect. Saving another $75 a month. Keep asking around.
Posted 10/7/2019 9:55 AM (GMT -5)
Thanks for the update. Good luck!
Posted 11/4/2019 11:30 AM (GMT -5)
Here we go. PSA 3.1. Steady rise. No change in scans. My MO offered two explanations. Either the met in my lower vertebrae or micro mets are causing the PSA rise. If it jumps within the next month, we are probably going to zap the bone met with spot radiation. Then no more trial.
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