No post for long time, here is my update.

[Glsn10]

For fellow Gleason 10 diagnoses.

I found that when I was diagnosed I found it difficult to find any information about what I could expect.

I know that none of us have the same reactions to the same medication but still I’ll list what I’ve be through so they might see what could transpire.

I was diagnosed back in 2013 age 53, psa 9.Something, all 14 cores positive for pc. Stage 4, metastasized prostate cancer.

I have been through:

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

Throughout the years I’ve been admitted to the hospital for adjustment to my pain meds a few times.

In January I had Gamma Knife Brain surgery for cancer above my brain stem and optical nerve.

Since that surgery I have had a titanium rod put in my left femur as it broke when I attempted to get into the shower.

Approximately 8 weeks later I had another titanium rod put into my other femur as it was too weak and was going to break also.

In addition to those surgeries I’ve been to the emergency room on a couple different occasions. Once for pain when I thought I had a broken ankle (it wasn’t), once for a fever of 101.4 (got antibiotics and two blood transfusions).

I’ve been admitted to the hospital for corrections to my pain meds.

Been put on carboplatin.

Now I’m on cytoxan. It appears that it is not working so my oncologist is trying to get me on erleada but so far the insurance company has denied it twice.

Because of the chance of further bone breakage I no longer walk and use a power chair to get around.

I now have to push like I’m birthing a baby to pass urine and have lost all feeling so I can’t feel when I have a bowel movement but I haven’t gotten to the point that I soil myself. (Just had radiation in an attempt to get some feeling back).

My bone pain is again beginning to get worse so hopefully I’ll get approved and the new drug will help.

On a lighter note I’m continually told that I look great and you wouldn’t know that I had cancer.

I know that I am running out of options other than pain relief but my team of Mo, Ro, Neurologist, Palliative Dr’s etc. still hold out hope for a decent quality of life and even if I am questionable they are all very supportive.

[Tall_Allen]

Have you looked into the randomized clinical trial for Lu-177-PSMA? No guarantees that you'll get the therapy and I don't know if you qualify but it may be worth a shot:

clinicaltrials.gov/ct2/show...

[Glsn10 in reply to Tall_Allen]

No, but Nalakrats also recommended that I look into it so I’ll ask my team about it.

Thanks

[William123Cooper123]

Oh, my! You are going down the road of hell ... appreciate your sharing as I’m aware that my “good times” will eventually also be cut short with a reoccurrence. I don’t like surprises, so have some idea from your experiences of what I will eventually face. Damn! damn! damn!

Thanks ... my thoughts and caring prayers are with you.

————-

All my treatments, all the expenses ... one would think I’d be getting better? Like healing? When I first started from diagnosis and treatment, thought it couldn’t get much worse, and then the worse couldn’t get worse. I’m on opioid pain medications ... yes, it’s a drug and not only cuts into the pain ... but it’s a drug and it “makes me feel better.” Am 74 years old, and want every day to be (at least) pain-free, and to be happy. I won’t out live the consequences of addiction and the use of opioids. But each day will be a happy one, and with pain under control. This is a road through hell, and I just can’t do it alone (need a little help from my friends).

——————

Thanks to everyone for sharing their experiences ... very meaningful, thanks!

[Glsn10 in reply to William123Cooper123]

Thanks for the prayers

[snoraste]

Quite a journey. I admire your resilience. I understand that City of Hope has been using some immunotherapies “off label” with some positive results. Lu177 is also a definitely good first choice.

[Glsn10 in reply to snoraste]

Thank you for your good wishes and advice.

[Glsn10]

I’ve received recommendations to look into Lu177 from more than one respondent. Don’t know if I can get it but will be asking about it with my team.

Thanks for the advice. Best wishes to you.

[j-o-h-n]

Geezamacripe! Geezamacripe! Geezamacripe!

Good Luck and Good Health.

j-o-h-n Wednesday 09/26/2018 5:23 PM EDT

[Glsn10 in reply to j-o-h-n]

Geezamacripe? Thanks for your good wishes.

[j-o-h-n in reply to Glsn10]

pssst... (between us two) I don't want to use J. C.'s name in vain....

Good Luck and Good Health.

j-o-h-n Thursday 09/27/2018 1:06 PM EDT

[Glsn10 in reply to j-o-h-n]

Got it..........thanks again.

[paulofaus]

Thanks Glsn10. I'm a fellow Gleason 10 guy, diagnosed 2.5 years ago age 49. I've had my share of challenges, but reading your story makes me think that maybe I've been spared somewhat. It's a shitty thing you're going through, I hope something comes along in time for you, and for me for that matter. You're a fighter. Cheers from Australia. Paul.

[Glsn10]

Thanks Paul, As you would know this hasn’t been easy for me or my family,we all do the best we can. All I’ve want from the time I was diagnosed was quality of life and I am afraid it is running out for me. I just don’t want to have a lingering and painful end.

Thanks again for you good thoughts.

[kimiya]

Hi Glsn, Thanks for posting your updates. I admire your care and support for others, as my dad has advanced prostate cancer too and reading your post gave me comfort that there are definitely a lot of options. I send you lots of positive energy from my side, you are a strong positive man like my dad and that is the most important factor to fight against this disease.

[Glsn10 in reply to kimiya]

Thanks,

I don’t check this sight everyday but I saw your reply and thought I could update my post.

I was denied for the drug Erleada by both Medicare and my Insurance Co. but the drug company Johnson and Johnson gave me a grant for the drug so I started it a couple weeks ago. I will need to get some labs done and get them to my oncologist so we’ll see if it does any good.

I’ll do my best to keep everyone updated whenever I have any information to share.

[Break60]

Thanks for sharing; you’re a real trooper!

[Glsn10 in reply to Break60]

Thanks

[Break60]

You’ve been through hell and I deeply respect your fortitude. Not sure I could go it. God bless you and yours!

[Glsn10]

You’d be surprised what you can do when your family is as supportive as mine is.

Best of luck to you. Sending you all good wishes.

[savingdaddy]

Bless you! Praying for you.