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PC Clinical Trials - what's out there & worth looking into!

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Posted 6/19/2014 12:32 PM (GMT -5)
I think we may be coming to the end of our PC journey. I am aware and keep track of the clinical trails web site (www.clinicaltrials.gov), Do not want to travel any "great" distance to be included in a trail, but do want to know if and what might be available within the Tennessee area. There are so many of you "out there" who are so advanced in your knowledge than I and I am asking you all to share your expertise and help me with my latest quest.

Husband is having difficulty with bladder and kidney issues, being constipated and then unable to urinate. Radiation treatments caused scaring in the bladder area and he is now experiencing problems because of those treatments. He is also under chemotherapy Jevtana (cabazitaxel), which also causes some of those side effects. That plus the scare tissue is causing havoc with him and has become very uncomfortable and painful. (Doesn't want to have a Foley catheter inserted). Husband is considering stopping chemo because of this and therefore our next step will be clinical trails......PSA from last treatment is showing a rise and this could also mean he is failing this treatment.

Okay my PC buddies/warriors calling on your help. He's also beside himself because we have a "family" vacation planned in 2 weeks and this is happening to hamper that activity.

Sal
Posted 6/19/2014 12:49 PM (GMT -5)
Sorry, I can't answer your question, but I can sense the heartache and frustation in your post.

 

I so hate this f-disease.

 

Good luck to you. I hope you find a trial.

 

One suggestion: Call Dr. Lam/Scholz/Turner office in Marina del Rey (Prostate Oncology Specialists). They are in the forefront in terms of knowledge of trials. Maybe they can give you some information.

 

I just found the #:

 

 tel 310 827 7707

 

Mel
Posted 6/19/2014 12:57 PM (GMT -5)
Clinicaltrials.gov has advanced searches you might try including by state


This is a prostate cancer pipeline report of stuff in trials:

/sites.google.com/site/prostatecancerpipeline/

Good luck

Post Edited (robertC) : 6/19/2014 12:00:51 PM (GMT-6)

Posted 6/19/2014 1:26 PM (GMT -5)
Sal, I suggest you send an email to Tony Crispino...his email address is available on any of his postings. Tony is perhaps our most knowledgeable member on the subject of clinical trials.

Jim
Posted 6/19/2014 1:37 PM (GMT -5)
Has he tried ketokonazole yet? Not sure if there are any clinical trials with XL184, but that drug did show a lot of promise in the beginning. Good luck Sal and Ted, we are keeping you in our thoughts and prayers.
Posted 6/19/2014 2:08 PM (GMT -5)
Hi Sally,

My husband is to start the trial I copied from an earlier post on Gizzynme's (Rob) thread. Problem is his condition has worsened and I fear he will be back in the hospital again. He uses a catheter and no urine just blood and clots and is very frail right now. In any case here is the trial information:

Trial:
A Phase 3, Randomized, Double-blind, Controlled Trial of Cabozantinib (XL184) Versus Mitoxantrone Plus Prednisone in Men With Previously Treated Symptomatic Castration-resistant Prostate Cancer

Experimental: Cabozantinib
Subjects randomized to the cabozantinib arm will also receive placebo mitoxantrone injections (color-matched with methylene blue) and placebo prednisone capsules.
There will be a maximum of 10 infusions for mitoxantrone placebo.
Or
Active Comparator: Mitoxantrone/prednisone
Subjects randomized to the mitoxantrone + prednisone arm will also receive placebo cabozantinib tablets.
There will be a maximum of 10 infusions for mitoxantrone.
Posted 6/19/2014 2:34 PM (GMT -5)
Sally,

So sorry to hear this. You're in our thoughts and prayers.

Marie and Jim

Study of Cabozantinib (XL184) Versus Mitoxantrone Plus Prednisone in Men With Previously Treated Symptomatic Castration-resistant Prostate Cancer
available in
Tennessee
Memphis
Study Site
Bradley Somer Ph: 901-683-0055
Email: bsomer@westclinic.com
Posted 6/22/2014 9:42 PM (GMT -5)
Sally,

I have not posted on HW for a very long time. Since that time my husband Bob passed away after a 5 1/2 year battle. Although I've been told never to look back at the choices we made, I believe, I probably would have done things differently.
I believe Cometriq, Cabozantinib, XL 184, caused my husband to lose so much weight that he could not recover. Probably should have never gone on this medication. I don't think it changed the outcome. If anything, maybe it hastened his demise.
Xofigo helped with pain but so does morphine. The trips to the hospital for the Xofigo were way too difficult and painful for Bob. Looking back I would have had him stay home and omitted the time spent going into the hospital.
These are my opinions only about the two medications. Just wish someone would have shared this information with me so I could have weighed my options a little better.
A clinical trial called Steap really helped and gave Bob a good QOL for 8 months. If I recall his PSA dropped from 40ish to 5 from one dose.
Good luck in your search. I will keep you both in my prayers.
Zimac
Posted 6/22/2014 10:14 PM (GMT -5)
Sally - I am so sorry to hear about Bob's passing after his courageous battle with advanced PCa.

He was fortunate to have a loving supportive caregiver like you in his corner throughout the ordeal.

Thanks for continuing to share your experiences that may help others avoid what turned out to be pitfalls for you and Bob.

That''s what makes this site so wonderful.

LupronJim
Posted 6/24/2014 9:11 AM (GMT -5)
Hi Sally ........

   I think you had one more Jevtana treatment - and scheduled this week for Ted. First ..... I do hope some improvement is shown with that treatment or before that treatment.

   But .... it does seem that the clinical trial is, for some of us, the last hope for more years of a high QOL!

   I should be hearing within days of a possible, if not proposed, clinical trial for me - at the University of Chicago. It was thru the effort of my Oncologist.

   It sounds as though you could have more confidence in your recent Oncologist and the local trials. So sorry - if that's true. Chicago would be a distance from Tennessee - but I would be glad to ask, when I'm being interviewed there, if they might have any suggestions for trials close to you.

   I will, as usual, update my thread on Jevtana - with this information soon!

   You and Ted both have my best wishes.

Rob & Gizmo

 

Posted 6/24/2014 5:02 PM (GMT -5)
Sally and Rob,

I am finding out that these trials require tests beforehand and they are extensive with procedures. After a whole day of tests, bone scan, 15 xrays, and blood work, he will begin the double blind trial this Thursday.

Good news that his urine is clear again after a horrible infection.

Peace to all.

Cathy

Post Edited (enjoylife) : 6/24/2014 4:05:23 PM (GMT-6)

Posted 6/25/2014 10:03 AM (GMT -5)
Cathy ........

   The very best to your hubby this Thursday.

Sally .......

   I found yesterday that the University of Chicago does have a clinical trial that should be appropriate for me. I will be contacting a Dr. Stabler there within the next few days.

   I am going in for my 28-day blood draws this afternoon - along with my monthly Xgeva. Hope to hear good things from Ted soon. My latest PSA increase should be available in two days .... woopee!!!!!!

   From reading another post here today, I may just give my first doctor of PC a call - for perhaps a second opinion. His name is Dr. Brian Moran and he was my doctor for the original brachytherapy 10+ years ago. He has a very strong reputation in this area.

Peace and wellness

Rob & Gizmo

 

Posted 6/25/2014 12:40 PM (GMT -5)
XL184 and Xofigo look like options right now.

We are expecting good news with XL-184 but as Zimac points out there are some issues for some patients already with cancer treatment related morbidities. I notice in your signature that Ted was never on Zytiga and/or Xtandi. Or at least your signature omits it.

Perhaps a bit late for either, but perhaps not.
Posted 6/26/2014 4:06 AM (GMT -5)
ENZAMET worldwide study of 1100 men in Australia, New Zealand, Canada, US, Ireland and UK.
Google ENZAMET for details.
Posted 6/27/2014 4:24 PM (GMT -5)
Hi all,

Yesterday when we saw the Oncologist, we were told that trial denied him. So no trial and my husband begged to be put back on Xtandi, which the Oncologist did. His hemoglobin is 7.0 and rbc 2.2. Oncologist said he is a candidate to have a heart attack because his blood is very low so today he is getting another blood transfusion.

Thinking of everyone,
Cathy
Posted 7/1/2014 12:50 PM (GMT -5)
Hello Cathy ......

   So sorry to hear about the clinical trial denial. Did they give any indication that if his blood tests were improved, he might be re-considered?

   In two days, I have an appointment to see a Dr. Stadler at the University of Chicago - an interview for a clinical trial. I am in the process right now of getting copies of past catscans and bonescans - on disc. And my Oncologist did last week sent a copy of my file to the U. of C.

Sally .........

   Hope there is some good news coming from your way about Ted.

Peace and wellness

Rob & Gizmo

 

Posted 7/5/2014 9:36 AM (GMT -5)
Hello Sally ......

   Hope your vacation was enjoyable.

   I did have a meeting at the University of Chicago Thursday - and at least initially signed an authorization to proceed with a research trial.

   It's uncomfortable thinking about it. The experimental drug is OTS167 and while having promise, it also has the potential to create some problems within me.

   I was nearly denied because of my creatine levels of 1.8 to 2.0! The maximum creatine level for acceptance is 2.1!

   I may remove myself from this trial by Monday or Tuesday. More thought is needed. The trial is scheduled to start in about one month.

   I did ask Dr. Stadler of the U. of C. about any other suggestions he may have that are in Tennessee - besides Vanderbuilt.

   He had a high regard for Vanderbuilt. the only other suggestions of his were more than a couple of hundred miles away - Duke University and the University of Ohio State.

Peace and wellness

Rob & Gizmo

 

Posted 7/8/2014 10:58 PM (GMT -5)
Vacation was good, Ted was uncomfortable because of the Foley catheter but he managed, and was a real "trouper".
Ted's PSA has risen to 73.75 as of Monday and I think he has decided to discontinue the Jevtana and look to the clinical trail programs. I don't think he will be interested in anything with chemotherapy, but I'm not sure. It probably will depend on how the trial is presented and what are the parameters that go with the trail data. XL184 and Xofiga would be a good starting point, but we will see if any trials are available in our location, don't know if we would travel very far or not, that will be Ted's decision. May also look for another oncologist or at least a second opinion. Ted is not in much pain, but appetite is getting worse and worse, and fatigue levels getting worse as well.

Anyone of you all out there that could supply us with any information,....send it on....it will be very much appreciated. No signature......
Posted 7/9/2014 12:24 PM (GMT -5)
Sally, as you know my husband was denied doing the trial, but now he is back on Xtandi. Zytiga worked really well for him and for 18 months.

Best to you and Ted.
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