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

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Mumbo
Veteran Member
Joined : Nov 2018
Posts : 1150
Posted 8/4/2019 3:21 PM (GMT -7)
Hi Rick, sorry to hear that your PCa is progressing. Weekends in the summer tend be slow on the forums. You may want to create a new post for your situation and you will get better responses since there are lots of folks that have been on hormonal and chemo type treatments that were not G9.

I don’t have anything else to add except ask if you on hormonal (ADT) drugs also?
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rockyfords
Regular Member
Joined : May 2016
Posts : 184
Posted 8/6/2019 11:01 AM (GMT -7)
reply to Sr Sailor regarding variable responses to 177Lu-PSMA-
some correlations exist-
Some extreme responders also carry BRCA mutations, which cause defect in repair of double strand breaks, which the radiation causes to happen in cancer cells

over many administrations of the drug in Europe and Australia, patients with only lymph node metastases seem to fair better; median PSA decline of 92% vs 72% in patients with nodal mets plus only 1 or 2 bone mets; longer time to progression, better survival.

there was a trial of this drug that predated VISION here in the states; used a "cost-recovery" mechanism where subjects could be in a trial if they paid $10K per injection for the drug; shut down now due to lack of relevance because of VISION, but one subject showed mixed response after two injections: very substantial increase in bone and organ met volumes with 97% decrease in lymph met volumes

reference for lymph node study
https://doi.org/10.18632/oncotarget.26789

rf
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Fairwind
Veteran Member
Joined : Jul 2010
Posts : 4107
Posted 8/6/2019 5:53 PM (GMT -7)
Hello Rocky..I made it into the treatment arm of the Vision trial in Denver and had my first injection of Lu-177 on July 31. Had a rough 4 days but coming around now, feeling much better..It sure would be nice to get a fairly long remission out of this..Like you, I have pretty much run out of options..I would like to try BAT before I give up on it completely..
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mattam
Veteran Member
Joined : Aug 2015
Posts : 3034
Posted 8/6/2019 5:57 PM (GMT -7)
Fairwind,
Hope you get a good response.

Good luck!
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grandpamarv
Regular Member
Joined : Aug 2019
Posts : 42
Posted 8/8/2019 11:44 AM (GMT -7)
Just joined the forum, glad to find it.

Age 73
Live in Southern Maryland
DRE found suspicious firmness 4/2019
PSA
4/2019 3.16 ng/ml
8/2019 0.05 (after 4 months of ADT)
Biopsy: 4/29/2019 % of core cancerous: 1, 20, 100, 50, 70, 100, 60
perineural penetration identified on 2 cores
extraprostatic extension identified on 2 cores
Gleason values:
4/29/2019: 8, 8, 9, 9, 10, 10, 9,remaining 5 cores benign
ADT (bicalutamide 50mg) beginning 5/1/2019
CT
7/29/2019: no evidence of mets
Bone Scan
7/29/2019: no evidence of mets
MRI of prostate:
scheduled for 8/15/2019
Pursuing second opinion at Hopkins
Weighing surgery vs radiation, presently inclined toward radiation as lymph nodes may be affected
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Mumbo
Veteran Member
Joined : Nov 2018
Posts : 1150
Posted 8/8/2019 2:50 PM (GMT -7)
Hi Grandpa Marv - I am sure the last 4 months have been tough, starts out with a concern and the next thing you know, you are up to your knees in learning about PCa and what all the abbreviations and numbers mean..

My guess is the doctors are not going to be pushing surgery given your age and the fact that your high risk cancer is probably outside the prostate but you never know. The MRI should provide some insight of what is next. Might consider a PET scan at some point to get more info on where the PCa is or isn’t. The second opinion at JH is a real good idea and should provide some additional guidance. Probably some good resources in DC as well.

It might be a good idea to start your own thread (New Topic) so everyone sees it and can help as needed.
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grandpamarv
Regular Member
Joined : Aug 2019
Posts : 42
Posted 8/8/2019 4:59 PM (GMT -7)
Hi Mumbo
Thanks for prompt reply and suggestions. I will start a new thread, wasn't certain "New topic" was correct way to do it but now I know. I am compiling list of questions for Hopkins folks, including whether a PET scan is appropriate, if now now when. Also looking for/reviewing literature on low PSA but high Gleason. Urologist is suggesting radiation (even though he would be surgeon if I went that way). What I've read so far indicates EBRT + BT + ADT has the best prognosis.
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Mumbo
Veteran Member
Joined : Nov 2018
Posts : 1150
Posted 8/8/2019 6:07 PM (GMT -7)
Yeah, the G9/10 thread has been going on for a long time and veers in many directions so many do not even look at it often. I only do it once in a while and happened to see your post.

The low PSA situation happens from what I have read. No one knows why, the PCa just does not generate the PSA in some people.

I would agree that EBRT of some variety + high dose brachytherapy + ADT (the triple play) will be suggested but additional scans will help with that decision.
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grandpamarv
Regular Member
Joined : Aug 2019
Posts : 42
Posted 8/8/2019 6:18 PM (GMT -7)
Hi Mumbo

I started new thread as you suggested (Newby with GS 10 but PSA 3.16) and already getting replies. This thread is huge and I can see why a separate thread is good idea. Will check back here now and then but expect it won't be as often as at new thread.

Thanks again.
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rockyfords
Regular Member
Joined : May 2016
Posts : 184
Posted 8/8/2019 9:40 PM (GMT -7)
Fairwind-
I am very glad you are in the treatment arm. We are three weeks apart for injection dates; I get #4 next week. keep us posted and great luck to you-


grandpamarv- everything in your posts suggests you are getting good treatment; best luck to you, friend, it sounds like cure is possible for you; be well-

rf
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Everton
Regular Member
Joined : Jun 2017
Posts : 202
Posted 8/10/2019 5:04 AM (GMT -7)
Feeling good, doing a lot of walking. A bit of a PSA bounce this month over last month. Overall no complaints.
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Mack
New Member
Joined : Sep 2019
Posts : 2
Posted 9/10/2019 6:45 PM (GMT -7)
Diagnosed with Stage 4 prostrate cancer March 2019. Extensive bone metastasis and multiple lymph nodes involved. Gleason score of 9 (5+4). Age 73. Getting ADT shot every 3 months and taking generic Zytiga and prednisone. On diagnosis PSA was 14. Went for my first 3 month checkup to Urologist and got another shot. My PSA is now 21 from 14. Had to go for another CT and bone scan. Have not gotten results back yet. Concerning that my PSA did not go down after generic Zytiga for 3 months. Anyone with similar experience?
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grandpamarv
Regular Member
Joined : Aug 2019
Posts : 42
Posted 9/11/2019 3:24 AM (GMT -7)
Hi Mack. I don't have experience to share but suggest you start a new topic. See Mumbo's recommendation to me a few posts up in this regard. I did so and have gotten many helpful replies. Best wishes.
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Ash K
Regular Member
Joined : Missing Key Value : en-US, 577 2017
Posts : 22
Posted 9/17/2019 1:43 PM (GMT -7)
Hi,

I was doing fine up to this morning when I saw my PSA and testosterone lab results. I guess you can see my situation and my treatments in my signature but here it is again. I'm 47 years old, two years ago DX with G9, mostly %100 with perineural invasion, MRI, PET Scan, CT Scan, GA68PSMA PET Negative Mar-May 2017, Completed IGRT 46Gy, Brachytheraphy 110Gy, Chemotherapy, HT Lupron for 2 years. My PSA was <.1 during the whole treatment. My oncologist was saying <.1 is undetectable but after reading comments here that actually should be <.01. So I'm kind of confused there. That might be Kaiser standard. My testosterone was low teen during HT until today's result. I am at PSA 0.2 and T 625. Those are huge percentage increase in 3 months. I'm not worried much about testosterone level. But PSA has increased between %100 to infinity mathematically speaking. My PSA could have been 0 or near zero 3 months ago. Testosterone level increase is unusual too, 60 times more than previous test. No wonder I have been feeling great after completing HT, going to gym 5 times a week and getting back into shape and a huge increase sexual activities.
I'm just very concerned about the PSA increase rate. Are this rates normal? if there's a normal for a cancer patient.
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alephnull
Veteran Member
Joined : Dec 2013
Posts : 2005
Posted 9/17/2019 2:05 PM (GMT -7)
I don't think you have enough info yet. Another PSA test to confirm an upward rise is needed (at least that is what my doc told me)

But for arguments sake since we don't know what your actual initial PSA is due to the < sign.
Let's assume 0.1, going up to 0.2 in three months is troubling as that's a PSADT of 3 months (mine is 1 /12 months)

But you really should get another test at least 2 to 3 weeks after your last one. Your doc might insist on a full month or more between tests.

The first time I went off of ADT my PSA went from <0.1 to 0.18 to 0.30 to 0.72 , all in 4 months time.
Correction from 0.18 to 0.72 in 4 months time
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Ash K
Regular Member
Joined : Missing Key Value : en-US, 577 2017
Posts : 22
Posted 9/17/2019 5:13 PM (GMT -7)
My PSA went up from <.1 to .2 in three months but it's at 6 months past ADT.
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alephnull
Veteran Member
Joined : Dec 2013
Posts : 2005
Posted 9/18/2019 6:35 AM (GMT -7)
In general Oncologists prefer to see at least two successive PSA increases before making a treatment decision.

Yours is still relatively low, so one more test. to be sure.

But your doc will know the right road to go down.
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Dogdays
Regular Member
Joined : Jan 2017
Posts : 309
Posted 12/14/2019 8:21 AM (GMT -7)
Wow. Almost 3 months and no activity in here at all. Maybe that’s a good thing. Figured I’d bump it up a little in the page count.
Just had my PSA and T levels checked. My last actual injection of Lupron was July 2018.
My T level today is far from impressive. Will need to speak with my MO this week. It is however slightly up from 156, 6 months ago to 160. Not what I wanted to see.
My PSA is still at <.05. That I can live with
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JNF
Veteran Member
Joined : Dec 2010
Posts : 5104
Posted 12/14/2019 9:04 AM (GMT -7)
Good PSA results, just what you want. My T recovery was slow after ending ADT. Took about 18 months to get in the lower part of the normal range.
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GoBucks
Veteran Member
Joined : Jan 2018
Posts : 1017
Posted 12/14/2019 1:19 PM (GMT -7)
Tomorrow will be my 2 year anniversary of starting Zytiga. Still <0.01. Wishing all a good holiday season and a healthier New Year.
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Sr Sailor
Veteran Member
Joined : Sep 2015
Posts : 975
Posted 12/14/2019 4:46 PM (GMT -7)

Dogdays said...
Wow. Almost 3 months and no activity in here at all.

Unfortunately, rockyfords (see his 8/8, 8/6 and earlier entries) is not with us anymore.

Post Edited (Sr Sailor) : 12/14/2019 4:49:34 PM (GMT-7)

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Dogdays
Regular Member
Joined : Jan 2017
Posts : 309
Posted 12/14/2019 6:45 PM (GMT -7)
Unfortunately yes. But it is not a reason why there is no activity here. The loss of Rockyfords has taken its emotional toll on the group. There are still people looking for advice and support. I’m sure Rockyfords would agree.
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Michiganman16
Regular Member
Joined : Apr 2016
Posts : 43
Posted 12/16/2019 12:12 PM (GMT -7)
Hello, new to this forum, thought I would join the group. been lurking for sometime, know Prato and a few guys from another forum. Hoping to be of help and provide support to those in need. Thank u, MM
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Michiganman16
Regular Member
Joined : Apr 2016
Posts : 43
Posted 12/16/2019 12:22 PM (GMT -7)
Made a few errors in my signature, hope it is now corrected. uPSA prior to SRT was 0.11
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mattam
Veteran Member
Joined : Aug 2015
Posts : 3034
Posted 12/16/2019 12:36 PM (GMT -7)
MM,
It would be best for you to start your own thread to get the best attention to your individual situation. Welcome to the forum.
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