Don’t know where I go from here.

[Glsn10]

Going to try to update for any Gleason 10’s that like me are looking for what could transpire.

I was diagnosed back in 2013 age 53, psa 9.Something, all 14 cores positive for pc. I have been through:

Lupron continuous from beginning, Strive, Docetaxal, Xtandi, Radium 223, Cabazitaxel, Mitoxantrone and other radiation treatments for pain etc.

You can go back and look at my prior post for better timeline.

Yesterday I had Gamma Knife Brain surgery for cancer they found last week above my brain stem and optical nerve. I believe that I am running out of options but my team of Mo, Ro, Neurologist, Palliative Dr’s etc. still hold out hope for quality of life and even if I am questionable of my length of life they are all very supportive.

I sit here resting and hope that my team will come up with a course of action that will continue to work but to be honest I feel that I’ve been blessed to have the quality of life with my family and the amount of time to share with family so, no regrets!

They say that the progression to cancer spreading to to brain is very very unusual as most prostate cancer goes to the lungs, liver or other organs but of course as my family says I can’t be “normal”.

If you are a Gleason 10 starting out your trip please hold out hope. I never thought when I began that I would have had the time to liquidate my business and take the trips and time I’ve been given with my family.

With the new treatments and clinical trials that are out there now you can have an even luckier time than I have.

I have not given up nor do I feel I’m that close to my end but as a realist I do understand that time is most likely less than more.

I’ve never been a prolific writer on this or any site I just want to get something out there for anyone that like me a few years ago might be confused about what may come with a high Gleason score and mcrpc.

Best of luck to all of my brothers and their support teams, hope this helps a little.



[Dan59]

Thank You for your post Glsn10, I too am a gs 10. I just wanted to say the moderator of an old group I was in (Hormone Refractory Prostate Cancer) had his cancer spread to the brain for years before he passed, He was always going for stereotactic brain radiation. I wish you the best in beating this back, and remember we are all here for you.

Dan

[Glsn10 in reply to Dan59]

Hi Dan59,

Thanks for you good thoughts. Your advice on this site has always been right on and I appreciate the good wishes, I’m in no way giving up yet. imho it’s too early to give in, but I am a confirmed realist and know that my luck will someday give out. I just want to leave some record for this small Gleason 10 group. found in my journeys beginning it was hard to find anyone that was at a Gleason 10 and if I can give some look into what could come for another I am hoping that it will help.

Best of luck to you and your family.

[JamesAtlanta]

Thank you for your thoughtful and inspiring post. We are all pulling for you. And praying for you!

James

[Glsn10 in reply to JamesAtlanta]

Thanks JamesAtlana,

I can use all the prayers I can get.

My best to you, keep up the good fight!

[paulofaus]

Hi there I'm also part of the G10 Crew I wish I wasn't but there you go I'm pretty used to it now. I can relate to a lot of what you're saying but my journey started in April 2016 at age 49 and I've been through ADT treatment and chemotherapy and cryotherapy but not as much as you've been through. I wish I had something to offer but I'm not as knowledgeable as many of the guys here just wanted to check in cheers Paul from Perth in Australia.

[Glsn10 in reply to paulofaus]

Hi Paulofaus,,

Sorry your part of this Gleason group it’s a crappy place to start the fight.

I found that my fears of treatments, especially chemo were generally worse than what I endured.

I always weighed my quality of life against the anticipated side affects and so far have been glad with the treatment choices I have made.

Keep a great medical team for yourself and never second guess your choices we all get different responses and I found that for me, sound advice and my gut were not so bad.

Thanks again and keep fighting.

[vandy69]

Good Morning Glsn10,

I am also in this exclusive club since DX in 8/12 at age 65 (please see bio for treatment history). Mine has recently taken up residence in my liver!

I assume that your medical team has done genetic testing--Guardant360 liquid biopsy or Foundation One tissue sample tests? Sometimes these reveal genetic defects that are actionable with drugs that would not be in the normal arsenal.

I continue to believe that if we can live long enough, we can be saved by the new technologies, like immunotherapy.

Best wishes. Never Give In.

Mark, Atlanta

[Glsn10]

Hi Mark,

Thanks for the kind words.

As far testing my team has hit it all. After 25 years as a Medical Oncologist I am only the third patient for my oncologist that has progressed to the brain.

As he stated: it could be dumb luck or that because we G10 guys are lasting longer he may see more in the future. Only problem is that that doesn’t leave much “research “ for the team to expand upon.

Now that we’ve temporarily fried the brain it’s onto my pain in my legs so that I can walk with less pain. The pain has been like broken bones but as you might expect the brain took the main attention for the last few days.

I, like you believe that immunotherapy is probably the next wave of meaningful treatments. At least that’s my hope!

Best to you and yours, I’ll be keeping you all in my prayers.

[gusgold in reply to Glsn10]

G10,

can PCa start out as as G7 and progress to a G10 over time

Gus

[Dan59 in reply to gusgold]

Gus, It is my understanding that Gleason Grades can migrate as they become mutated and more poorly differentiated.

[Glsn10 in reply to gusgold]

Dear Gusgold,

I would defer to Dan59 on that. I never worried about it as I started out at 10 and had no where to go from there. I do understand that the cancer mutates as they Dr’s work against it so I would not be surprised to find out it does mutate higher.

Thanks for thinking of me.

[Beauxman in reply to gusgold]

There are differing opinions on that. I found this discussion compelling: healthunlocked.com/advanced...

[Beauxman]

I have survived with Gleason 10 for three years and am aiming for 40 more. I am in the middle of a bone marrow transplant. The process has been very painful and challenging, but it's working as planned, so far.

[Glsn10 in reply to Beauxman]

Hi Beauxman,

Your goal 40 more is inspiring, It reminds me of when I used to say “I have terminal cancer but it hasn’t killed me yet”.

I still have high hopes for more time but I still feel that I must have what I consider to be a decent quality of life or what’s the purpose?

Again my main purpose in restating my progression is to give one guys insight in to what may or may not transpire. None of us get the same response from the choices we make, and none of us can say with any certainty that we only made the best choices so I say try not to second guess yourself and live with the mindset to have the best day you can everday your still here.

I wish you and everyone else on this site all the best.

[Hidden in reply to Beauxman]

Brave soul you are. l Like those smiling faces Beauxman. Keep up the good fight

[softwaremom00]

Hi Glsn10,

I just want you to know that you are in our prayers. I hope that your time will be more. Sending lots hugs too!

Softwaremom

[Glsn10 in reply to softwaremom00]

Thanks!

[ctarleton]

Thanks Glsn10,

Getting this perspective from someone who is closer to the other end of the rainbow, as it were, is always helpful. I've had some lucky biology since my initial diagnosis a little over 4 years ago with a PSA of 5,006. Your advice about living more in the experiences of the present moment is something that rings true to me. In recent months there have been 3-4 men I've known from local support groups with very advanced prostate cancer who have died or are declining quickly with few treatment options available. It has been my honor to have met them in mutual support, and to share some hugs that have helped in healing us all in mind and spirit, as we all have lived at the will of our bodies. Thanks again. And a Big Hug to you, too.

Charles

[Glsn10 in reply to ctarleton]

Hi Carleton,

Kind words, I know I wouldn’t have made this far without the love and help from my family, friends, and others I’ve meet along this trip. I’m certainly not done yet but I can see the inevitable and am not afraid.

I’ll hope for the good times to come but be willing to let go when I feel it’s right.

Can’t say enough about the love I’ve received and hope all that travel this road are nearly as lucky.

Good luck to you and I pray for all that suffer.

[Roland632017]

Hi Glsn10

You want my statistics so I am on Gleason 5+5=10 for both right and left prostate glands and after PSMA and Bone Scans on 30 November 17 confirmed Stage 4 D 2.

Here is Australia Zytiga 60x500 mg pack retail for $3600 but as citizens/permanent resident under PBS you pay $40.

It is cheap but does it mean I have to go Blindly with the flow,

I am currently on a regime/treatment that I am happy and comforting and I am living a quality lifestyle with pain/fatigue free.

But yesterday I played golf on a very hot afternoon so was dehydrated and go suffer some aches on calf and back so this is a rare occasion and I am feeling better now.

I don't know what you make of it?

Roland (Honorary Doctorate????)

[Hidden in reply to Roland632017]

Dehydration is our enemy.

[Hidden]

We are very similar at Dx 2015 age 54 . No 10 but 8 gl .. non op. Thank god that we’ve both been given some time to be with family and put our houses in order. I’m a realist.. but remissions and many more years are possible. We are all pulling for your success on this new battle front.

[Roland632017 in reply to Hidden]

Hi Lulu700

You look worried and this according to my pH chart had an acidic pH 3 if you keep on worrying.

Just follow your treatment as you and your doctor has specified.

Then when you are keen and interested combine my pH protocol by maintaining Urine&saliva pH as closely as possible to 7.2-7.5 buy any Alkaline commodities,

The simple ones are what I have been using green tea (pH > 8.0) baking soda/a little honey ( 3 g baking soda in a 1/2 glass water should raise pH by 1; Ural ( 1 sachet has 1.76 g sodium bicarbonate and raise pH 0.6 ); sodibic (840 mg sodium bicarbonate and raise pH 0.3 ) green tea brewed with fresh boiling water 2 glasses may increase pH 0.6

These figures are only a guide and its my rough estimate,

Good lick,

Roland (Honorary Doctorate?????)

[Hidden in reply to Roland632017]

What me worry? Alfred E. Newman.. thank you for sharing your protocol surely that we are all similar but follow somewhat different approaches. Thank you honor!

[Glsn10 in reply to Hidden]

Dear Lulu 700,

I hadn’t heard about anyone lasting long after brain mets but #Dan59’s Post gives me some newfound hope. I hope it does to you also.

We all need something to grasp onto and good wishes always help.

Let all keep pulling for each other.

Many good wishes to all!

[Hidden in reply to Glsn10]

Hope springs eternal.. reality ( what a concept) we accept our dislodged chemistry...what choice do we have.. ? None...There are a lot of people that are going to give it their all , to save you.. Not only words of support. I give thanks to all of the doctors and nurses and techs that have entotal saved me up to this point.. We have no guarantees.. Although our med system is not perfect and doctors do make mistakes , I believe that 99% of our med staff are doing their best to save us or make us feel better.. We are fortunate not to live in a third world with sub par medical help. Dan 59 knows. Anything is possible. We’re counting on you to break the mold and beat the stats.. I can’t imagine how this feels to hear about PC in the noggin? Frieghtening to say the least.. Please fight hard. Any one of us can take the same path.. we are It’s ya. You faring well is hope for the rest of us. I pray for your healing brother.

[Glsn10 in reply to Hidden]

Thanks

[Hidden]

A lot of people praying for you....