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The Gleason 9 and 10 Crew - Welcome and how ya doin'? (Part 4, continued thread)

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Prostate Cancer
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alephnull
Veteran Member
Joined : Dec 2013
Posts : 2005
Posted 5/17/2019 6:52 AM (GMT -7)
Peter,
Okay that's reassuring, so I'd like to hear from other men who are on intermittent ADT.
How fast did your T rise once it did start to rise?
I'd love not to worry about a 1.5 month doubling time.
If other men are similar, I'll breathe a sigh of relief.
What I know is: that's a fast doubling time and my Oncologist is very concerned about it.
He is associated with a teaching hospital, KU Med, so I'm not going to doubt him without testimony to the contrary.
In mid-June I'll have another PSA test, and if it is over 1.0 (or close to it) he is going to order an Axumin scan. And then I'll go back onto treatment.
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PeterDisAbelard.
Forum Moderator
Joined : Jul 2012
Posts : 6353
Posted 5/18/2019 7:09 AM (GMT -7)
AlephNull,

I didn't mean to question your oncologist's expectations or advice. I was just pointing out that so soon after the cessation of ADT it is difficult to get much meaningful information from a doubling time per se. Your most recent six-fold increase in PSA brings you back to roughly the same level you were at in August 2017. If the next few month's testing shows that your PSA has resumed the same general trajectory it had in 2017 then you can expect your vacation to be brief.

My T recovery after two years of ADT was laggardly and ultimately unsatisfactory. After giving the recovery process over a year and remaining stubbornly hypogonadial I spent some time trying drugs that will sometimes encourage natural T production to resume. I tried Clomid/clomiphene (pills) and human hCG/chorionic gonadotrophin (injections) and finally wound up using a testosterone gel (which I still use). 9 out of 10 guys recover faster / more reliably than I did so I am a poor example of what to expect although with your T level only at 67 after nine months of vacation you may be slow to recover too.

One thing to possibly keep your eye on is the research on treatment of castrate resistant disease with suprephysiological T levels. The theory is that there is a range of T concentrations that that encourage prostate cancer to proliferate and that range has a bottom and a top. Most treatments for systematic prostate cancer try to drive T levels below the bottom of the range. This works for a while then castrate resistance sets in and the treatments become ineffective. Recently researchers have been looking at going the other way -- above the range. Several very small studies on men with asymptomatic castrate resistant prostate cancer have shown very significant responses to treatments with testosterone at serum levels much higher than is physiologically possible. There's still a lot of work to do to identify the best way to use it and to identify the subset of men it will help but there is definitely something there.

Just something to keep an eye on. It's a researchy treatment for castrate resistant men and it will be a while before it's ready for wider application. But you are still castrate sensitive with the first-line drugs so you won't be in their target population for a while yet either.

Here's a nice review article of which I can read slightly more than half: Supraphysiologic Testosterone Therapy in the Treatment of Prostate Cancer: Models, Mechanisms and Questions
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alephnull
Veteran Member
Joined : Dec 2013
Posts : 2005
Posted 5/20/2019 7:15 AM (GMT -7)
Peter,
I'm sorry if I came across badly.
I really do appreciate your input, it was reassuring.
My last Lupron shot was a year ago this month.
My PSA readings went something like.
Start of treatment vacation 0.09 T-level 9.2 ,
4 months 0.09,
8 months 0.10,
12 months 0.62 T-level 66.7 barely above castrate level.

My wife has told me that I become more of an arse as my T level increases.
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rockyfords
Regular Member
Joined : May 2016
Posts : 184
Posted 6/13/2019 8:50 PM (GMT -7)
UPDATE on Lutetium-177 PSMA 617 therapy (VISION trial)

As described in my previous post, this targeted treatment attacks PCa cells with radioactive molecules that bind to PSMA, get engulfed by the cell, and destroy the cancer cell.

My first injection occurred in early April, when I was weak, poor of appetite, losing weight, hardly active and needing oxygen when active, and round the clock opioids for pain, and not enjoying my days very much.

2nd injection was on May 23rd (every 6 weeks per study up to 6 injections) and I had my first trial scans last week (every 8 weeks for scans).

Results: I started feeling better in the first week. My PSA dropped about 7 points each week, from 65 to 16 in 6 weeks (IMPORTANT NOTE: I have read a lot of literature on these studies and one can have no PSA response on first dose follwed by good responses on 2nd and later doses). My scans were mixed, showing some stable nodes, some nodes and areas shrinking, some areas expanding....BUT my clinical response is very strong to this point. Gaining weight because I eat more, more active and not needing O2, stronger in rehab, reduced my pain meds 50% to twice a day, and what pain I do have is pretty low grade. My days are pretty good compared to the before picture. I enjoy them much. It is a good summer.

Side effects: dry mouth for first 7-10 days, not intolerable; some diarrhea about day 5-6; maybe some fatigue first few days.

I will get my 3rd injection July 3 and 2nd scans 4 weeks later.
Thank you to all who wrote encouragement after my last post. Best of luck to all who try for this trial. By my experience there is nothing of concern and good chance of relief in late stage PCa.

Sing while you can, as my friend Carmine says.......

rockyfords
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mattam
Veteran Member
Joined : Aug 2015
Posts : 3034
Posted 6/14/2019 6:38 AM (GMT -7)
Rocky,
Outstanding! I’m very happy for your improved wellbeing. It seems progress continues towards making PCa a manageable disease. Thanks for participating in the study. It may help me some day.

My best hopes for you.
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Jerry L.
Veteran Member
Joined : Missing Key Value : en-US, 577 2010
Posts : 3114
Posted 6/14/2019 7:57 PM (GMT -7)
I agree with mattam. Those that participate in trials are heroes in my book. Thanks for doing that Rocky.
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Dogdays
Regular Member
Joined : Jan 2017
Posts : 309
Posted 6/14/2019 9:08 PM (GMT -7)
I got my last lupron shot a year ago and had my one year blood draw today. Liking the results so far.
PSA <.05
T= 156
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Everton
Regular Member
Joined : Jun 2017
Posts : 202
Posted 6/15/2019 12:52 PM (GMT -7)
Overall I feel great! I go to the gym twice per week and walk about an hour a day. Recent bone and cat scans are the same as they where 6 months ago. PSA has been creeping up, but M.O. is not concerned at this time. Doubling time is about 5 months.
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Fairwind
Veteran Member
Joined : Jul 2010
Posts : 4107
Posted 6/16/2019 8:48 AM (GMT -7)
Hello Rocky, glad to hear the Lu-177 is having a positive effect..I have signed up for the "Vision" trial in Denver, waiting for the PSMA scan which will be done in Scottsdale AZ. My PSA is now 1098, no pain so far, but loss of appetite and a generally crappy feeling..My only active treatment at the moment is the 6 month Lupron shot..Are you getting your treatments in Denver ? Hang in there Brother...
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randyd
Regular Member
Joined : Oct 2018
Posts : 110
Posted 6/17/2019 4:10 AM (GMT -7)
Rocky,

Congratulations on the results - just outstanding. Please keep the updates coming
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rockyfords
Regular Member
Joined : May 2016
Posts : 184
Posted 6/19/2019 6:45 AM (GMT -7)
Thanks to all for support and kind words-

Fairwind: yes, I am getting treated at UCHealth in Denver-

a note about Scottsdale- the address they gave me for the Gallium PET-scan location was not useful to the hotel transport driver; delivered us outside the outpatient surgery building- best to go in main entrance of the hospital and ask info for a map to the scan facility- very best of luck to you on the scan and roll of the dice for the study- if you have any Qs, let me know

rf
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Dasyluo
New Member
Joined : Apr 2019
Posts : 18
Posted 6/19/2019 12:52 PM (GMT -7)
Is anyone having heard of ARV-110? Does it give a hope to us to cure?
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mattam
Veteran Member
Joined : Aug 2015
Posts : 3034
Posted 6/19/2019 1:47 PM (GMT -7)
This is the first I am hearing of the drug/treatment. A quick internet search shows ARV-110 actually degrades/ destroys the androgen receptor. In Vivo mouse studies showed 70% tumor reduction. In Vitro, it was > 95% effective in degrading ARs in cell lines used to research PCa. Phase I human trials have apparently started and are scheduled to run through 2021. Again, this is information I just quickly looked up, but it does seem promising.

Participants in the study have MCRPCa who are progressing after using two approved systemic treatments, one of which must be Zytiga or Xtandi.

Let’s hope for good results.
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jmadrid
Regular Member
Joined : Sep 2017
Posts : 347
Posted 6/19/2019 2:32 PM (GMT -7)
There is a recent entry post on this drug in the "new" prostate cancer infolink. I mentioned it a few days ago, probably in a wrong thread about other relatively new drug. Hope this or something similar may be a real forward step soon.
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yaamba
Regular Member
Joined : Nov 2011
Posts : 168
Posted 6/21/2019 3:19 AM (GMT -7)
Hello all,
Its been a while since my last contact, but I have been reading posts regularly and following progress every week or so.

My husband had his latest PSA test results today and it indicates that doubling time is now every 9 weeks or so. (I'm not much good at maths, but test in mid April was 15, and today (mid June it was 26).

He is due to see Oncologist on Tuesday so we will wait and see what he suggests. (Our GP gave us the results as we like to have them prior to seeing specialist so we know what to expect and what to ask etc.).

Husband has not been on any medications at all since he was diagnosed with Lewy Body Brain Disorder with Dementia about 18months ago. Until then, he had been on Eligard injections, but these really interfered with his complex reasoning, memory, and other factors associated with Lewy Body Disorder. So joint decision was to stop the injections and wait and see.

So, it appears its darned if we do go ahead with Eligard and darned if we don't. Not an enviable situation. Hopefully specialist will have another approach up his sleeve.

On the brighter side (is there a brighter side???), he has no pain, neither is he experiencing any other complications. Sounds strange to say that if you didn't know he had cancer, you wouldn't know he had cancer. He is very tired and gets fatigued quite easily, but this is also a complication of the Lewy Body disorder, so its hard to know which to attribute the tiredness to. Right now, he does not appear fazed by the PSA reading and is in fact enjoying Friday night football on the tv, after eating a hearty dinner and having a couple of red wines.

Meanwhile, I am a mess!

Wish I had better things to say, but, he IS still here, he IS still enjoying going to the gym daily, he IS eating well and enjoying his wine, and still hates mowing the lawn.
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yk
Veteran Member
Joined : Aug 2013
Posts : 637
Posted 7/4/2019 3:47 AM (GMT -7)
Greetings to G9 bros,
Has been a while...new face-lift forum..great
I m good ..with recent blood check,,,undetectable
Wishing all bro...all the best...down the PC road
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Fairwind
Veteran Member
Joined : Jul 2010
Posts : 4107
Posted 7/4/2019 9:50 AM (GMT -7)
Looking Good !! You are very lucky....G-9 can be tough to clean up...
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mattam
Veteran Member
Joined : Aug 2015
Posts : 3034
Posted 7/4/2019 10:02 AM (GMT -7)
Yaamba,
It's surprising to me no one responded to your post. I don't have any deep words of wisdom for you. Sometimes just getting it off your chest - like you did in your post - can be most helpful. I glad your husband doesn't seem to be in distress, and I hope it remains that way. I hope you have family or friends for your own support.

Let us know how things go. Hope you and your husband have an enjoyable July 4th.
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LadyJaneK
Regular Member
Joined : Jan 2019
Posts : 64
Posted 7/5/2019 1:11 PM (GMT -7)
Hi Yaamba,

I didn't have a chance to respond till today. I'm glad Mattam did. I'm also one of the wives of a G9 on the forum these days. Those numbers are so hard to see. I totally understand your concern. It sounds like you & the docs are doing everything you can to deal w your husbands complicated issues. I've never heard of Lewy Body Disorder(Dementia). Sounds like a difficult combination & lots to deal with.
Funny you should mention how your husband looks. I keep saying the same thing about my husband. At 10wks post RP you'd never guess he had cancer or that we're anxiously awaiting blood results to determine next steps.

I wish you all the best as you deal with things and try and sort out where to go from here. ~LjK
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GoBucks
Veteran Member
Joined : Jan 2018
Posts : 1017
Posted 7/6/2019 2:06 PM (GMT -7)
How am I doin? 18 months now of undetectable! All other blood work doing great too. I pay a price with my side effects but I am starting to feel the best I have in months. Looking forward to smelling the roses this summer. And some Handel's Ice Cream tonight!
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Dogdays
Regular Member
Joined : Jan 2017
Posts : 309
Posted 7/18/2019 5:39 AM (GMT -7)
Just a bump. I hate having to go look for this page.
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rockyfords
Regular Member
Joined : May 2016
Posts : 184
Posted 8/3/2019 10:31 PM (GMT -7)
UPDATE on VISION trial

I am tracking PSA response to 177Lu-PSMA therapy in my signature. My clinical response has been very good but not steady up. 10 days before and after 3rd dose, I felt like a return to pre-trial days. Cleared up pretty good though on 11th day. While post 2nd dose scans were mixed, scans post 3rd dose showed significant reduction of tumors (all of mine are in lymph nodes only) and stable disease in the area that was growing on the last scan. I am about 10 days before 4th dose now and still feel good. In summary, >90% reduction in PSA and good clinical and radiographic responses. It is nice to be smiling more often these days.

love to all
rf
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mattam
Veteran Member
Joined : Aug 2015
Posts : 3034
Posted 8/4/2019 6:22 AM (GMT -7)
Great stuff RF. Seems like we are getting closer to long term control of PCa. These trials may benefit me down the road.
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Sr Sailor
Veteran Member
Joined : Sep 2015
Posts : 975
Posted 8/4/2019 12:08 PM (GMT -7)
Yes, that's a really nice response. Great!

Is there an hypothesis why this method seems to work well for some and not for others (absent the fact that not all prostate cancer cells express sufficient PSMA for this therapy to be effective)?
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smokymnts
New Member
Joined : Aug 2019
Posts : 1
Posted 8/4/2019 12:21 PM (GMT -7)
Hi
Name is Rick, just joined. I'm 70 and was diagnosed with stage 3 with a gleason of 5&4. PSA of 17. I had 43 radiation treatments and PSA wen't down to almost 0. Last year the PSA started to go up again and the cancer has spred into my spine, T5&6 ,L6 and s1. Now on chemo once every 3 weeks.
Any thoughts?
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