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

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Posted 3/28/2018 11:15 AM (GMT 0)
Hi Guys

Appointment last week with Urologist found my psa up to .32 from .058 in December. She recommended going back on Casodex 50 mg until bone and cat scan are done. I am seeing M.O. April 3 so will see what he has to say about the rise. He had mention Zytiga after 3 rises of my psa. Staying very optimist.
Posted 4/18/2018 1:19 AM (GMT 0)
I have read through the whole thread and am pleased to read how many niners are doing well. I'm also now part of the psa zero club so hopefully the combo of Lupron+Zytiga+Prednisone will work for others too. Hate to be here but glad to have the support.

Jim
Posted 4/18/2018 3:34 PM (GMT 0)
Me, too. I just read through the entire thread after avoiding the discussion here for us Gleason 9s and 10s. I've been afraid of finding many horror stories. Instead, I found optimism, support and useful advice. Thanks. It's comforting to know I'm not alone. I'm still early on this journey. At Week Four of Radiation Treatment, I've had my first set of urinary side effects, which are minor and easily treated with two Flomax a day and a six-day pack of steroids. Here's hoping the side effects stay manageable.

Went to my financial advisor yesterday. He has me living well on my savings until age 98. I didn't say anything except to hint that I've spent all my life saving and now it's time to spend down. Told him to double the travel budget for next year! I intend to stay with the sun. As my old friend Henry David Thoreau wrote: "Some of our richest days are those in which no sun shines outwardly, but so much the more a sun shines inwardly."
Posted 4/18/2018 4:56 PM (GMT 0)
After goofing off all winter fishing and working on my tan down in Mexico, my PSA alarm bell started ringing ever louder, a nag signal that can not be ignored..It's up to 90 now..(Well it CAN be ignored but at your peril) So I'm back in Denver doing the tests, the scans, the doctor visits, investigating the latest treatments, getting different opinions, investigating insurance approvals for promising but astoundingly expensive treatments...What a rat race...But it looks like chemotherapy (Docetaxel), simply because at this point it's still the most effective and least expensive of all my options....The fact it destroys my quality of life for 18 weeks does not seem to matter to the docs and insurance companies. Seems like it will take an Act Of God to move them away from The Standard Treatment....I'll keep posting as this little drama plays out...
Posted 4/19/2018 7:46 PM (GMT 0)
Hello!
I hope it's OK as the wife of a G9er I've joined the group. As chief researcher and moral supporter I find the postings valuable.

Question - both PSA tests since surgery are .01 or less. Can we expect PSA to ever reach 0 or to be cancer free?
Posted 4/20/2018 2:14 AM (GMT 0)

APL1881 said...
Hello!
I hope it's OK as the wife of a G9er I've joined the group. As chief researcher and moral supporter I find the postings valuable.

Question - both PSA tests since surgery are .01 or less. Can we expect PSA to ever reach 0 or to be cancer free?

Welcome, glad you found us but sorry you need to be here! We have many wives and daughters posting here for their men, since we guys kind of suck at reaching out for support. Your husband is lucky to have you helping him this way.

I've added you to the roster, in the 4+5 group and ordered by diagnosis date.

As to your question, the PSA tests a lower limit for what they can detect. As your report said, <0.01 means the reading is below what it can measure, so that's a good thing! That's as good as it gets for the PSA report. That says "no evidence of disease", or "NED". With G9, docs are usually unwilling to say actually "cancer free". All we know is there's no evidence of it, so it's in remission. Maybe 5 years after end of treatment if you still have <0.01 PSA scores you could say cancer free, but it's always going to have a little unspoken "for now" following it. That unfortunately just comes with the territory.

There are guys with G9 who do very well after treatment, for years. Let's plan on your husband being one of them! There is a lifetime of follow up PSA tests, and you'll both likely have some "scanxiety" every time. This too becomes a new normal, and it's ok.
Posted 4/20/2018 6:58 PM (GMT 0)
Finished Adjuvant RT 4/16/18. My SE's were mainly an extra urge to go (rectum) and fluctuation from too soft of stools to slight constipation, when I took Imodium. The rectum nerves get over stimulated and so when any stool comes in at all, they want to fire and expel it, resulting in a lot of "small poops", as my RO called them. The Imodium helps relax them but in my case it tended to constipate me.

My cardio was good before RT and, as a result, per the RO, I didn't suffer more SE's, ie. fatigue, painful urination, some blood in stools, etc. I was totally continent going in and had a few spells of stress dribbles but they were temporary. Back to full continence now.

I try to jog a mile 5-7 days per week and lift heavy weights 3 times per week. This is also because I am on Lupron/Casodex, also, and trying to stave off muscle and bone wasting. I only have "warm vs. hot flashes", again, possibly due to my exercise, plus, I am married to a Dietitian, who keeps me on a good diet.

Obviously, I am doing the Trifecta! Will do a PSA next month just before my next 6 month Lupron injection and see what to do next.

I had IMRT/IGRT with 25 Tx of 45 Gy (8 minutes total time) and 12 Boosts, they called them, of 66 Gy (4 minutes total time). The 25 were of the Prostate Bed and the Pelvic and Periaortic Lymph Nodes, with the 12 only of the Bed, where I had gold markers (Fiducials) inserted.

Here is a video of me ringing the bell, following my last RT, if interested?

/www.youtube.com/watch?v=OPlnDjrMTSA
Posted 4/20/2018 6:58 PM (GMT 0)
Thank you very much for the warm welcome and thorough answer to my question. I really appreciate it!
Posted 4/22/2018 4:21 AM (GMT 0)
As per my March appointment with Urologist the cat and bone scan she ordered shows no difference since last July's scans. smile My M.O. will leave me on Casodex the Urologist started for me and see where I am in 90 days. Psa is @ .400

Still trying to get my Trimix injection amount just right. It now is at .7 and needs to go higher. I discussed this with the Urologist and she suggested cutting back a bit and adding the little blue pill she gave me some samples on. We will see what happens.
Posted 4/24/2018 5:35 PM (GMT 0)
Update - We just returned from Dr. Sartor and he ordered a PET scan and CT scan. From that he will determine the best "next" course of treatment since he is now resistant. What he is thinking is (depending upon the scans):

Provenge + Zytiga + Eligard shot
And maybe radiate any "active" spots

So ... we may or may not start our 5 month trip out west in our motorhome the end of May like I have planned. But, that's ok ... Dr. Sartor has always been "aggressive" with my husband's cancer and I do appreciate it. Will know where we go from here on our next visit, May 8th.
Posted 4/24/2018 7:11 PM (GMT 0)

DebbieMH said...
Update - We just returned from Dr. Sartor and he ordered a PET scan and CT scan. From that he will determine the best "next" course of treatment since he is now resistant. What he is thinking is (depending upon the scans):

Provenge + Zytiga + Eligard shot
And maybe radiate any "active" spots

So ... we may or may not start our 5 month trip out west in our motorhome the end of May like I have planned. But, that's ok ... Dr. Sartor has always been "aggressive" with my husband's cancer and I do appreciate it. Will know where we go from here on our next visit, May 8th.

Debbie do plan on that trip or maybe a 3 month trip instead as we all need some peace and quietness away from this. We are in the mist of getting out house ready for sale and will downsize to a condo, looking forward to a trip to Portland to see family and wonder around for 2 weeks, then listing our house on return. Hopefully planning on a California trip late this year to see family.
Posted 4/28/2018 5:17 AM (GMT 0)
A G9/10 Stage IV Update:

By early March things were not looking good: PSA doubled in about 6 weeks. Follow up Bone/CT scan showed possible mets in center of chest, possible hit on left hip, and CT scan showed 2 inch Lymph met.

Added Zytiga and Prednisone to Lupron, after 6 weeks got my first PSA test to see if the Zytiga was working: PSA went from being over 12 to 0.06 now. cool

Taking Calcium and D3 supplements to help prevent bone loss and Doc just ordered a Bone Density scan. Said I should keep walking and better if I do stress bearing exercises to help prevent Osteoporosis. Taking daily Sulforaphane (via Brocco Max) and stopped all other supplements I'd been taking, but still take Tart Cherry juice twice a day for my (knee) Osteoarthritis.

After seeing TA mention it, I also just started a Mindfulness class - even give us Homework! shocked
Posted 4/28/2018 2:09 PM (GMT 0)

Adagio said...
A G9/10 Stage IV Update:

Said I should keep walking and better if I do stress bearing exercises to help prevent Osteoporosis.

Adagio, don't know if your knee can take it but jogging is great to combat Osteoporosis. Does not have to be a fast pace, either. Been doing it for several years and just turned 70 and my bone density is still normal. I only jog a mile (5-7 times/week) and it really gets the heart rate up quickly, too. I don't have to spend nearly as much time working on the cardio, either.

I also do pretty heavy bench presses and butterflies, to stave off possible muscle and bone wasting, too, 3 times per week.

Zytiga appears to be effective for you! But hope I don't have to go there. Getting my first PSA, since surgery, lupron/casodex and RT, next month.

Video of me ringing the bell following my last RT:
/www.youtube.com/watch?v=OPlnDjrMTSA
Posted 4/28/2018 3:48 PM (GMT 0)
Hello all, really don't understand all that is going on in this forum and a lot of the #'s people are posting but I do no I have stage 4 prostate cancer. I was never told what my Gleason score is but I do know what it is. I was diagnosed in Jan. 2017 and head a cancerous mass removed from my lymph nodes in my abdominal area and that has not resurfaced. At this time my psa was 235. I have been getting lupron shots every 6 months since then and did 6 treatments of taxotere after that with a casodex kicker which worked fine for a while but my psa crept up to around 80 and they started me on Zytiga. That didn't work well and when my psa hit about 335 they started me on Jevtana which I had my 1st application of 3 weeks ago. My psa as of 2 days ago was 493 but I did have an infusion yesterday.My alkaloid phosphates (I know that is not quite the right term but anyone living this knows what I'm talking about) have come down from 1100 to about 750. My psa did come down to 2.9 after my round of Taxotere and casodex. Anyways , is there any one out there living with similar #,s that can advise me on treatments or alt avenues to explore? Thank you, notyet
Posted 5/2/2018 11:08 AM (GMT 0)
Hello NotYet and welcome. I personally don't have any advice to share with you about your situation but am bumping this in the hopes that you will get a response to your question.

Jim
Posted 5/2/2018 11:17 AM (GMT 0)

notyet said...
Hello all, really don't understand all that is going on in this forum and a lot of the #'s people are posting but I do no I have stage 4 prostate cancer. I was never told what my Gleason score is but I do know what it is. I was diagnosed in Jan. 2017 and head a cancerous mass removed from my lymph nodes in my abdominal area and that has not resurfaced. At this time my psa was 235. I have been getting lupron shots every 6 months since then and did 6 treatments of taxotere after that with a casodex kicker which worked fine for a while but my psa crept up to around 80 and they started me on Zytiga. That didn't work well and when my psa hit about 335 they started me on Jevtana which I had my 1st application of 3 weeks ago. My psa as of 2 days ago was 493 but I did have an infusion yesterday.My alkaloid phosphates (I know that is not quite the right term but anyone living this knows what I'm talking about) have come down from 1100 to about 750. My psa did come down to 2.9 after my round of Taxotere and casodex. Anyways , is there any one out there living with similar #,s that can advise me on treatments or alt avenues to explore? Thank you, notyet

notyet, can you tell us your GS? Also, have you had any scans for possible bone mets?
Posted 5/5/2018 3:32 PM (GMT 0)
Hello all and thanks in advance for all the information available here.

What I found out after CT, biopsy and bone scan is that I have Stage 4 with mets, Gleason 9, PSA at 19. Starting Lupron. I guess it could be worse, but at least now I know what I need to fight. I have mostly been active, the gym, eating healthy and spending time with family just became my primary focus. Retired from the Army after 25 years and from MegaCorp after 10 so fighting this is the only job I have now. Great support from wife.
Posted 5/6/2018 9:28 PM (GMT 0)
Hi HappyRick. I see you've found this thread. You've been added to the roster under the 4+5 group. Sorry you need to be here!

You have a tiger by the tail there, though as you've likely found by now there are some here in similar situations, most doing quite well.
Posted 5/6/2018 9:48 PM (GMT 0)

HappyRick said...
Hello all and thanks in advance for all the information available here.

What I found out after CT, biopsy and bone scan is that I have Stage 4 with mets, Gleason 9, PSA at 19. Starting Lupron. I guess it could be worse, but at least now I know what I need to fight. I have mostly been active, the gym, eating healthy and spending time with family just became my primary focus. Retired from the Army after 25 years and from MegaCorp after 10 so fighting this is the only job I have now. Great support from wife.

Yes, HappyRick, as redwing says, sorry you have to be here. Keep up the exercise and eating healthy. It seems to be minimizing my SE's on Lupron, to mainly "warm flashes", at night. My Dietitian wife gives me lots of servings of veggies and fruit daily, along with some red meat, chicken, salmon and tuna.

I was in the Army 46 years ago and often wonder if my cancer didn't come from my maintenance of nukes, but probably not, because I didn't ride on them that much! rolleyes

You will get lots of information from this site too, hopefully, to help you along the way?
Posted 5/9/2018 12:15 PM (GMT 0)
Results from the PET and CT scan shows some more active spots ... PSA has been rising. According to Dr. Sartor, it is time for my husband to begin the next phase of treatment. He will be starting Provenge in the next week or so. Will get his port put in early next week. After the Provenge treatment, he will go on Zytiga and pregnazone and will continue the Eligard shot. He has done fantastic on the HT for 6 years ...

Our trip in our motorhome out west/up north will still happen ... but will reduce the stops and won't start now until July. All's good, though ... Dr. Sartor has always been aggressive with my husband's cancer and I know he is in good hands.
Posted 6/5/2018 11:11 AM (GMT 0)
Hi Everyone,
Haven't updated in a while but thought i would post today since it's been almost exactly 3 years (and a bit) since my husband was diagnosed. We just got our latest pet scan results and they look better than the ones before with no new mets (the bone met he had disappeared after the imrt sessions 1 year ago) and even lower tracer uptake in prostate.

We were slightly disappointed that his PSA went up very slightly from 0.05 to 0.08, but at this moment it's too early to say if it's recurrence or a PSA bounce. The doctor tells us to wait and not to worry and that if it comes to that, we will qualify for apalutamide which should get to Singapore where we are by the end of this year. smile

Overall, i think the fact that we made it 3 years with a Gleason 9 diagnosis + mets and still today have great quality of life is really a cause to celebrate and i wanted to share it with this incredibly helpful forum here!
Posted 6/16/2018 7:31 PM (GMT 0)
Greetings, RedWing57!

I'm a Detroit native and fellow Red Wing (hockey) fan, so it appears that we may have that in common, but I'm also a newly diagnosed "high-risk" PCa patient much like the others here, so I'd like to get registered with this GS9/10 Crew.

As detailed in my initial (introductory) posting in the general Prostate Cancer Board just 2-days ago (see: https://www.healingwell.com/community/default.aspx?f=35&m=4024175), my initial biopsy produced a high Gleason score of 4+5=9, and a subsequent 2nd opinion downgraded it to 4+4=8, but there is no question that I remain "high risk" and that this sub-group of members is where I belong.

Many thanks, and best wishes to all for continued success in their respective treatment journeys. smile
Posted 6/17/2018 12:53 AM (GMT 0)
Hey Balladeer, welcome to our little corner of the PCa universe! You're on the list, in the 4+5 group; that was your initial diagnosis anyway. Who did the 2nd opinion? Epstein? In any case, it seems you have a lot of Type 4 cells anyway, and maybe some that look more like Type 5. The pathology assessment is a skill and requires training and some judgement. We'll hope that perhaps you truly don't have the type 5 cells, since they're some of the worst actors in this play.

It looks like you've done a lot of reading and research, which is great. So much of this process will benefit from you being ahead of the game, going to appointments with your questions in hand. The doctors seem to be patient when you are involved and prepared. Even if they don't agree with thoughts you may have, treatments you may think appropriate, they'll discuss it with you. If they don't, fire them and get someone you can talk to.
Posted 6/18/2018 7:25 PM (GMT 0)

Redwing57 said...
Hey Balladeer, welcome to our little corner of the PCa universe! . . . The doctors seem to be patient when you are involved and prepared. Even if they don't agree with thoughts you may have, treatments you may think appropriate, they'll discuss it with you. If they don't, fire them and get someone you can talk to.

Thanks RedWing! Lots and lots of stuff for me to read through here in the 4+5 Group, but I suspect it'll be very helpful for me to do so, and you're right about scrutinizing the physicians on one's team. I've already had some run-ins with folks upset about the fact that I wanted a second opinion on something, or the fact that I was educating myself on things in hopes of making sound decisions. Its a major red flag to me when so-called medical "professionals" get defensive over simple treatment questions, and at my age, I have 'zero' tolerance for such people.

Its early for me yet with respect to my ultimate treatment plan (or decisions), and I suspect that either IMRT or SBRT with possible brachytherapy and certainly ADT therapies are in my immediate future, but I am buoyed by the many reports of success from people with combined PSA/biopsy/imaging results similar to mine.

Anyway, thanks again for adding me to the 4+5 Group as requested, and best wishes for continued success to you and all others here who are battling this nasty little disease.
Posted 6/20/2018 1:31 AM (GMT 0)
Newest member signing aboard after my JHU second opinion I received today. I went from 2 4+4 cores (and 8 3+4) to 4 4+5 and 1 4+5 and 5 3+4. Full details at a new post made today. Bummer, but it is what it is.

I'll continue to take it one day at a time.
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