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The Gleason 9 (and 10) Crew - Welcome and how ya doin'? (Part 3, continued thread)

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Posted 9/7/2018 5:04 PM (GMT 0)
Just looking around HW this morning and came to the G9-10 thread and counted up the # of 5+4 guys and 5+5 guys and found that there have been only 7 in each group added since my Dx.


I guess this shows and confirms that high risk G9-10 guys are few and far between. If you add in that each guy in these groups have different Dx within that group it shows how difficult it is to find someone close to my Dx. (6/2016)


I don't know what purpose or how this makes any difference to any of us. It's just an observation. I just felt the need to post something with all that has transpired lately here at HW .(not wanting to enter the fray any more).


Also would like to welcome Sid007 to the group no one wants to be in. Stay and ask questions. This is a good place to be for info and support.


Mark

Post Edited (Artist Mark) : 9/7/2018 11:35:27 AM (GMT-6)

Posted 9/7/2018 5:45 PM (GMT 0)
Mark,
I’m so glad you bumped this great thread to the front. I was about to do the same for the ADT/SRT thread, for pretty much the same reason.
I’m not G9, but I follow your thread silently and I’ve learned a lot from it. Those of us who are 4+4 and 4+3 do well to learn now about choices we may have to make in the future.
Thank you, all who participate in this thread, for your contributions to the whole forum.
And Sid007, welcome!
—SP.
Posted 9/7/2018 5:47 PM (GMT 0)
Artist Mark, did you happen to get the e-mail I sent you for high Gleason, low PSA? It was a bunch of links to research my husband and I did on the subject since you said you were tracking my guy since he has similar stats to yours. Let me know if I should resend it (or maybe you went out and got a beer as I suggested instead of reading the scary stuff ). turn
Posted 9/7/2018 7:36 PM (GMT 0)
spouse21,

Yes I received it. Sorry. It was very much appreciated and you obviously put some time into that. Maybe you could copy and post that to the thread as it could be helpful to others.

Thank you Mark
Posted 9/7/2018 9:51 PM (GMT 0)
Oh, good, Mark. I wanted you to have the information.

I really have to sort through and organize the material better before I post it on the forum. Whenever someone has posted a question about High Gleason, Low PSA, I have post and tagged some of the links. Very few men have this unfortunate combo, thank goodness. Well, enough with highjacking this thread. Carry on!
Posted 9/8/2018 1:43 AM (GMT 0)
Since I'm the one who mentioned no new post, I guess I better contribute....
On 8/22 I started my HT, Eligard 45mg 6 month injection.
I had my consultation with my RO, We decided on RT for 9 weeks 5 days a week, And continue HT for 2 years....
Only been on HT for 16 days, But I think I'm already having hot flashes, Not extream but every now and again I feel like it's 100 deg....But no sweating.
Posted 9/8/2018 10:07 AM (GMT 0)

Artist Mark said...
Just looking around HW this morning and came to the G9-10 thread and counted up the # of 5+4 guys and 5+5 guys and found that there have been only 7 in each group added since my Dx.

I'm kind of glad you did that. Interesting to look at those trends, isn't it? Looking at poster's signatures led me to wonder about this early on, and that's one of the reasons I originally started this thread! It's also of note that in all of 2018 we added 10 members of the 4+5 group, and to my surprise NO members in either the 5+4 or 5+5 groups. (That could be a little off, since if a poster doesn't say their x+y I just put them in the 4+5 group, so there could be others in there.)

This is why these groups are very rarely specifically identified in studies. G9 is relatively uncommon anyway, but dominant Type 5 cell cases are rare indeed. When they are identified the statistics can be more concerning, with a significant degradation of outcome at each increased level. We usually get lumped in with a generic "high risk" group, including a lot of other factors (PSA > 20, G8-10, stage T2C or greater). A couple times I've seen a study like that say that there was a special outcome for the G9 or primary type 5, but not enough to draw a statistical conclusion.

All that really means is we end up throwing everything at it, including the kitchen sink, and more or less "side effects be darned". As SteelGuy (I believe) once said, "Blowtorch and pliers, whatever it takes!", or something close to that.

[Edit: just wanted to add, not all studies show worse outcomes across the 4+5 - 5+4 - 5+5 continuum. There are very few studies like that anyway, and some say there's not much difference. Just to clarify before somebody grumps about that.]

Post Edited (Redwing57) : 9/8/2018 8:25:32 AM (GMT-6)

Posted 9/8/2018 12:28 PM (GMT 0)
Hello everyone
I am one new bees that was added this year. Dropped of the map after surgery to rest for the next step.
Which is 18 months of HT and Radiation. So far 2 treatments of Firmagon and just started Zytiga & Predmisone, awaiting 40 treatments of IG-IMRT in Nov/Dec. Side effects are hot flashes, sleeping only 2-4 hrs per day, some anxiety and huge appetite. All manageable. Great diet of 80% vegies, no sugars, no meats or dairy. Very strong faith in GOD and great out look. Many, Many supporters. Still working way too much. I journal every day, but this format is new. Give me some time, I will get better and will also try to respond more.
Thanks for being here
Lou
Posted 9/8/2018 2:30 PM (GMT 0)
Hey Lou -

You have a lot going on there! Your doctors can help with some of the side effects. Worst for me was the fatigue, but I didn't seek any help for that. Annoying hot flashes on the other hand.... I did use Megace at a low dose (20 mg twice a day), and that reduced hot flashes about 80%. Others have used low-dose topical estrogen (estradiol) with good success. Anyway, ask your doctors if you would like some relief. They do have "potions and lotions" as someone just said.

My faith has carried me through much of this as well. All the best.
Posted 9/8/2018 4:45 PM (GMT 0)
I just received this link in an email from Us TOO. This will take you to the full text version of the article. It is certainly pertinent to those reading this thread. I don't recall if this was already discussed on the forum, as it was published in March 2018. Presented for information; read and do with it what you will.

Radical Prostatectomy, External Beam Radiotherapy, or External Beam Radiotherapy With Brachytherapy Boost and Disease Progression and Mortality in Patients With Gleason Score 9-10 Prostate Cancer

[Edit: Note that this is a retrospective study, so has some inherent risk of selection bias and so on. Just something to keep in mind.
More edit: the EBRT doses are low by today's standards, and the follow up period is short. I'm not very convinced by the results presented. Of course BT is a great way to boost the local radiation dose if the externally applied radiation is low, and that would give misleading preference to EBRT+BT in this particular retrospective study. This is a marginally useful analysis, but it is unusual in the amount of G9-10 cases involved. I don't know... upon reflection this may be more misleading than helpful. Again, as always, caveat emptor....]

Post Edited (Redwing57) : 9/19/2018 8:15:55 AM (GMT-6)

Posted 9/9/2018 4:49 AM (GMT 0)
As one of the this year newbies, I totally agree throwing everything at this now and not later.

Until proven otherwise, I'm going with the belief that this is going to be successfully slayed.

I'm 4.5 months into being on Lupron, done with 18 of 23 IMRT sessions (46 Gy) and had my prostate volume study completed on Thursday for my LDR seeds (110 Gy, procedure to be done in about 3 weeks).

My hot flashes have pretty well passed, I'm not experiencing any fatigue, I've got weight gain knocked down to only about two pounds, and the (relatively) minor urinary and bowel issues have gotten better in the past few days.

The initial diagnosis was a bit of a shock, the bump from G8 to G9 (by Epstein) was an "uh oh" moment. But all in all, while I'd rather not have this disease, it has made me more grateful for all I have been blessed with. I just keep trucking along, taking each day one at a time.
Posted 9/9/2018 5:15 AM (GMT 0)
Just read the article. Seems to be consistent with the Ascende study. Very pleased to have chosen the HT + IMRT + BT route.
Posted 9/9/2018 1:36 PM (GMT 0)
If most or all of your mets are on the bones, you might check and see if they are conducting the "Vision" trial, NCT03511664, anywhere near where you live.. Anything that can reduce your PSA from 600 to 0.1 can not be a bad thing..There is a thread running "New Stage 4 Trial" not far from this one..

Hey RockyFords, you must have gotten into the BAT trial at Anschutz ...Other than it didn't seem to work very well for you, were there any side effects, good or bad ? Where do you go for your ongoing treatment ?
Posted 9/9/2018 3:12 PM (GMT 0)
Hi Fairwind-

no trial on BAT- self-administered at home with the blessings of my MO in the Springs; a choice I made given all treatment I receive is palliative in nature anyway-

I feel that it did slow down some of the cancer- my PSAdt was about 4 weeks going into BAT- in 6 months of BAT (4 x 6 wk cycles) my PSA went from 2.5 to 6- assuming constant dt in the absence of BAT, my PSA would have been over 160 at the end-

regarding side effects of BAT-

(1) LOTS of energy and feeling real good most of the time

(2) weight gain in first 2 weeks of cycle due to fluid accumulation in legs and elsewhere (5-7 lbs); dropped back down just before next T injection

(3) we went with 6 week cycles to insure I was castrate level on T before next injection

(4) on 1st injection, no immediate side effects; around the time of each subsequent injection, sometimes just before or right after, I would get flu-like symptoms- mild fever, achiness, fatigue- last 2-3 days; It seemed to get a bit worse each time, but cleared up top the greatness of T-driven life soon, nothing I could not cope with; I assumed it was possibly the effect of cancer cells dying due to therapy and releasing inflammatory factors in my body- in some cases, it could be cells dying because T ran out, or other cases because T was overwhelming- depends on which cells we are hitting at the time I guess

(5) on the last cycle injection I was sort of run-over by the flu-like symptoms for 2-3 weeks- leading me to decide I would stop the therapy and my MO agreed-

Scans at this point showed some limited progression in lymph nodes (my PCa has yet to show up in bones or organs after 2.5 tears since dx)- so we have moved onto Zytiga as of now-

While on BAT I had my best semester of teaching in a long while- and I feel Like I was stabilized for a while; given the median duration of BAT in the readout on the xtandi cohort was 3.5 months in one of Denmeade's trials, I feel like I can claim some success in treatment, maybe a double instead of a homerun- It was a marvelous holiday for sure-


If I show a response to Zytiga, perhaps BAT helped set that up as well, since I failed xtandi very quickly last year-


thanks for asking Fairwind-


here's to another beautiful day on the Front Range

rf
Posted 9/9/2018 4:12 PM (GMT 0)
Thanks for the reply Rocky ! Did your MO write you the script for the "T" injections ? This is something I would like to try... I hope you get a "reset" and the Zytiga works well for you..The fact that it greatly reduced your DT made it worth doing...
Posted 9/10/2018 2:40 AM (GMT 0)
I'll bring this to the top so Ed can find this thread.
Posted 9/10/2018 10:04 AM (GMT 0)

Redwing57 said...
Hey Lou -

You have a lot going on there! Your doctors can help with some of the side effects. Worst for me was the fatigue, but I didn't seek any help for that. Annoying hot flashes on the other hand.... I did use Megace at a low dose (20 mg twice a day), and that reduced hot flashes about 80%. Others have used low-dose topical estrogen (estradiol) with good success. Anyway, ask your doctors if you would like some relief. They do have "potions and lotions" as someone just said.

My faith has carried me through much of this as well. All the best.

Thanks for the tip. Good info. I have talked with the Doc and we are going to wait and see. Don't want to add any more drugs if I don't have to.
Lou

Posted 9/10/2018 10:13 AM (GMT 0)
Glad to hear your side effects are getting better. I believe mine will too. We also talked about switching to Lupron from Firmagon as an option. Doc likes Firmagon just a little bit better. I don't want to stray too far from his recommendations. At least in the beginning. Cancer has also changed our lives completely. I have to say for the better in every aspect. Off to work.
Lou

CAdogsRus said...
As one of the this year newbies, I totally agree throwing everything at this now and not later.

Until proven otherwise, I'm going with the belief that this is going to be successfully slayed.

I'm 4.5 months into being on Lupron, done with 18 of 23 IMRT sessions (46 Gy) and had my prostate volume study completed on Thursday for my LDR seeds (110 Gy, procedure to be done in about 3 weeks).

My hot flashes have pretty well passed, I'm not experiencing any fatigue, I've got weight gain knocked down to only about two pounds, and the (relatively) minor urinary and bowel issues have gotten better in the past few days.

The initial diagnosis was a bit of a shock, the bump from G8 to G9 (by Epstein) was an "uh oh" moment. But all in all, while I'd rather not have this disease, it has made me more grateful for all I have been blessed with. I just keep trucking along, taking each day one at a time.

Posted 9/10/2018 12:07 PM (GMT 0)
Thought I'd check in with the G9 club. I think I'm posting in the right place now, gotta get used to this site again. Hadn't been here in a while, I've been spending time on a couple of other sites and lost track of this one. It still appears that my cancer was beaten into a dormant stage with the help of Dr. Myers, PSA remains undetectable, Alka Phos is normal and last Axumin scan showed no active disease. I now consult with Dr. Sartor in NOLA since Snuffy's retirement and continue monthly visits for bloodwork etc. with my local medonc.
Still on triple ADT - Xtandi, Lupron, Avodart along with estradiol patch and Metfomin. Also several supplements and Meditteranean diet - the Snuffy protocol as Sartor puts it. SE's of long term ADT are significant but I'm reluctant to change anything for fear of waking the beast. So the new normal includes fatigue, dull headaches, brain fog, memory issues, etc. But I guess I'll take it over the alternative.

Dull headaches are really annoying and usually are accompanied by some heavy brain fog. I nip it in the bud with one ibuprofen at the onset which seems to knock it down for most of the day and helps me to feel better. Anyone else get these?

Anyway just checking in and plan on staying in touch.

Ed
Posted 9/10/2018 1:07 PM (GMT 0)
Fairwind-

My MO wrote the scrip for med and syringes; my wife (an NP) gave me the shots at home; I had just had a scan and we (MO and I) figured that I met the eligibility criteria for Denmeade's studies, so I was comfortable accepting the risk; I had to sign a waiver acknowledging the experimental nature of the treatment and possible negative outcomes;


I certainly would have been happy to engage this therapy in a clinical trial, but the xtandi cohort was already closed (could have accessed in Denver), and other trials would have required travel to Baltimore- geographic limitations are a huge factor in accessing these trials when you get into symptomatic stage-IV, which I am now (although I was not symptomatic last January when I started BAT)-


and let's all agree- few of us engage in a trial just to be a guinea pig in a dataset- we all hope for that magic bullet that might give us a little more time; If near 50% of a population responds to a therapy that is experimental and cheap, but inaccessible by trial due to geography- well I cannot go down without a fight; I am just lucky my MO supported me I this.


rf
Posted 9/10/2018 3:25 PM (GMT 0)
Hi Rocky..

I have bone mets which ruled me out of the BAT trial in Denver..The problem being, in some men with bone mets the treatment apparently can cause severe bone pain...I need to investigate that more before I pursue BAT..But if the pain is manageable and short lived........I am still asymptomatic...

I e-mailed Dr. Denmeade at JH too...asking him about bone mets and BAT..

Post Edited (Fairwind) : 9/10/2018 9:43:46 AM (GMT-6)

Posted 9/10/2018 4:51 PM (GMT 0)
Ed-bar,
Glad to see you back. It's great that you have been able to keep the beast down! Here's to many more yrs of success.
I think you are posting in the right place also. We need to keep this thread active as it can be a great resource for those that are high risk.

I am just beginning to feel relief from the SE's of 18months of Lupron. I can't imagine having to be on it full time, but if that day ever comes I will know that it is possible to do. Knowing that guy's like you are doing it and making it through can be inspiration to those that follow. So, keep up the great work and keep posting!



Battle On Brothers!


The Artistic One -Mark
Posted 9/11/2018 10:11 AM (GMT 0)

Ed-Bar said...
Thought I'd check in with the G9 club. I think I'm posting in the right place now, gotta get used to this site again. Hadn't been here in a while, I've been spending time on a couple of other sites and lost track of this one. It still appears that my cancer was beaten into a dormant stage with the help of Dr. Myers, PSA remains undetectable, Alka Phos is normal and last Axumin scan showed no active disease. I now consult with Dr. Sartor in NOLA since Snuffy's retirement and continue monthly visits for bloodwork etc. with my local medonc.
Still on triple ADT - Xtandi, Lupron, Avodart along with estradiol patch and Metfomin. Also several supplements and Meditteranean diet - the Snuffy protocol as Sartor puts it. SE's of long term ADT are significant but I'm reluctant to change anything for fear of waking the beast. So the new normal includes fatigue, dull headaches, brain fog, memory issues, etc. But I guess I'll take it over the alternative.

Dull headaches are really annoying and usually are accompanied by some heavy brain fog. I nip it in the bud with one ibuprofen at the onset which seems to knock it down for most of the day and helps me to feel better. Anyone else get these?

Anyway just checking in and plan on staying in touch.

Ed
Soo!!! good to hear your doing great. I will plug your story into my limited memory capacity. Yes, I am having the same SE's. Hot flashes some times so strong my legs sweat. Brain fog causes loss of words, incomplete sentences, the inability to do three things at once. I fly a drone for work and crashed it while learning to deal with this new focus process. Head aches are no longer every day, about 1/2 the time. I too use Ibuprofen. That said, I wouldn't trade them for a minute, they are part of the equation to stay ahead of the disease.

Posted 9/11/2018 12:33 PM (GMT 0)
I got a reply from Dr. Denmeade at JH and says bone mets are not a problem for BAT as long as the patient is asymptomatic (no pain)..If the patient is having bone pain before treatment starts, then the pain can get worse after the testosterone injection..
Posted 9/11/2018 4:20 PM (GMT 0)
TO Fairwind-

But the UCDenver trial is Denmeade's trial- unfortunate they cast you out- maybe another call is warranted? my understanding is they are most concerned with bone mets in dangerous spots like the spine and with mets that could cause urinary obstruction if they get bigger-

I hope you find a path to this treatment if you want it- 3 cycles of T cost about $75 IIRC- I got no copay on my insurance for it; don't let the hospital infusion center give you the shots- a quick trip to urologist office should do it more cheaply, or if you have a friend who is an RN.....

best of luck to you Fairwind
rf
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