Recent Diagnosis

[Yellowtail33]

Good evening everyone, I’m new to this forum. My somewhat depressing story is in my bio. Anyone had a similar diagnosis that’s further down the line and can offer any encouragement? One tiny bit of more positive news is that since starting the hormone treatment my back pain (which was the only real symptom) has improved . The side effects aren’t great but hopefully it’s working.

[Tall_Allen]

There's very good response to triplet therapy in cases like yours:

prostatecancer.news/2021/05...

[Yellowtail33 in reply to Tall_Allen]

Many thanks, I’ll have read. Your input is appreciated.

[16starsky]

Hi Yellowtail 33

We are in the UK. My hubbie diagnosed six years ago with metastatic pc, psa 310. Gleason 9 (4+5) 3 bone mets . As you can imagine we were absolutely devastated.

Started on 6 cycles of Doxytaxel chemo which took his psa down to 1.5, and he tolerated it very well. Lupron shot every 3 months , a couple of years later went castrate resistant, so started Abireterone which he is still on, but is now beginning to fail.

We never thought at the start of this journey that he would still be with us now. He,s fine, a little tired, but carries on with a positive attitude. To look at him, you would not know anything was wrong.

I hope you have a good OC that will listen to you, question things if your not happy, and do lots of research.

I wish you every success with your treatment plan.

Kim

[Yellowtail33 in reply to 16starsky]

Thanks Kim and I hope your husband continues to do well.

[JohnInTheMiddle]

Hi YT. I'm almost 2.5 years in and except for fatigue doing pretty well. This from a discouraging beginning! My PSA at diagnosis with bone mets was 1700. Fortunate to go on triplet therapy.

So here are a set of "newbie notes" I wrote over a year ago (as two replies to a post). At the beginning of one's journey with PCa, after diagnosis, one is likely to be overwhelmed. One encouraging thing is that therapies keep improving!

Another thing is that there will be a lot of decisions taken on your behalf. Some people find it helpful to be more in the know and involved in choices.

The Beginning Of A Metastatic Prostate Cancer Journey - Part 1 of 2

healthunlocked.com/advanced...

The Beginning Of A Metastatic Prostate Cancer Journey - Part 2 of 2

healthunlocked.com/advanced...

A big success YT!

[Yellowtail33 in reply to JohnInTheMiddle]

Thanks John, much appreciated

[mababa in reply to JohnInTheMiddle]

That’s a great primer on metastatic PCa, JITM. My RT is scheduled for the end of the month, almost one year from the date of my biopsy when my condition came to light. I spent 4 months in denial. It’s only been a week since meeting with my own MO. He admonished me for not having already completed my RT. I’ve had more interaction with ROs. Your post reminds me that I’m not alone in this battle that’s about to begin in earnest, hopefully with no debilitating SEs to my organs. Anyway, great writing and thoughtful comments. Another reason this is such a good forum. Thanks!

[JohnInTheMiddle in reply to mababa]

Thanks Mababa! And congratulations on Orgovyx! (From my reading an GnRH antagonist has advantages over the super common Lupron which is a generation agonist.)

And good thing you have a medical oncologist. Because this is not just a mechanical problem with plumbing. Once it metastasizes, then it's a system wide question. And that's the purview of the medical oncologist of course.

I saw in your bio that you're thinking about taking a holiday soon. To avoid resistance. This sounds like your own decision making? What does your medical oncologist think?

From what I have read on here taking a holiday is so often a bad idea. And it's worth asking as to whether you are at risk of resistance so soon.

That's my two cents, but only offered as questions.

[mababa in reply to JohnInTheMiddle]

Regarding a holiday, he’s not in agreement. He explained that with metastasis I already have lots of cancer cells looking for a new home in my body to flourish. And, while RT will attack and eventually kill the larger lesions in my LNs, I shouldn’t risk allowing more to form and grow by allowing increased T to stimulate them. It was not exactly a pep talk. I’m rethinking the holiday, but ADT is really playing with my mind and body. My RO recommended two years on ADT post RT, which is SOC—although she is concerned about castration resistance, Lots to think about, as you noted.

[JohnInTheMiddle in reply to mababa]

My understanding is that once your PCA has metastasized, that barring unusual circumstances you have to be prepared to be on ADT forever.

Maybe read some of the posts by Tall_Allen on ADT. (For the record the search function on this forum is not so great. Many people just use Google, in which case you could try searching > healthunlocked Tall_Allen ADT <)

Also Richard Wassersug is the world's best expert on ADT.

lifeonadt.com/

I'd listen to your medical oncologist rather than your mechanic 😂

[larry_dammit]

well as I see it, nothing is written in stone when it comes to stage 4 prostate cancer. I was diagnosed with terminal cancer Aug of 16 with Mets through out my body and lymph nodes. Doctor gave me a 50/50 of 5 years. 8 years ago next month. Find and stick with a good oncologist,eat and gain weight, love your people and family. Don’t give up the fight there Warrior 👍🙏🙏👍

[Yellowtail33 in reply to larry_dammit]

Thanks Larry and the best of luck to you. Keep fighting!

[dhccpa in reply to larry_dammit]

Eat and gain weight is advice I never received in the early days. But you learn something new with each day's posts.

[GMan-62 in reply to dhccpa]

I like eat and gain weight! 😁

[PSA680]

Dear Yellowtail33 -I feel for you brother - I had a very similar diagnosis - no real symptoms - psa 680, Gleason 4 + 4 & multiple bone mets. That was March 2020. The good news is I’m still here - did have a heart attack a couple of years ago too just to spice things up 😂 . I started on Firmagon + Enzalutamide now on Zoladex + Enzalutamide - 4.25years in & my psa is still undetectable. The side effects were horrible at first but they either subside or you learn to live with them. The NHS standard of care seems pretty good.

Kind Regards & Stay Strong Brother & Take each day as it comes

Darren

[Yellowtail33 in reply to PSA680]

Thanks Darren, funnily enough I did have a Pulmonary Embolism 10months ago just for good measure lol.

[Yzinger]

I am coming up on my 1yr anniversary of diagnosis. I am on triplet and things are ok right now. I have lots of issues I complain about (sore feet but think plantar fasc, sore knees and hips - hoping related to sore feet, and I really do struggle sometimes with the lack of boners ;)) but a great piece of advice I heard in another post was this "lets not forget the best SE, we are still alive!!!"

so, to summarize, this all sucks but ALWAYS someone in worse shape.

**also my man, you are in the right place. This forum and the members are awesome and extremely valuable**

[Mgtd]

Nothing to add except welcome you found the right place. Stick around there are some extremely knowledgeable and caring people on this forum. Oh we also have a guy who does standup you will met him I am sure.

If you are a person who appreciates history then you know that It is our Independence Day tomorrow. Happy birthday America.

[Yellowtail33 in reply to Mgtd]

Happy Independence Day for tomorrow Mgtd. It’s a General Election here in the UK.

[Mgtd in reply to Yellowtail33]

Is the country expecting any big changes like in France?

[Yellowtail33 in reply to Mgtd]

The Labour Party is expected to win with a large overall majority. Don’t suppose it’ll make much difference though. They’re all as bad as each other.

[Mgtd in reply to Yellowtail33]

Sounds like us. Choose your poison.

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

"Oh we also have a guy who does standup you will met him I am sure".

If that should mean me, I just want to inform you that they asked me to sit down.

Good Luck, Good Health and Good Humor.

j-o-h-n (Happy Birthday America)

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

Rotflol …

[HydeParkBridge]

Started fight against metastatic stage 4, castration resistant, prostate cancer 2018. Conclude my chemo (6 rounds docetaxel, today). PSA down to 0.10 before this last treatment (high was 1.76). Prostate removed 12/2015. Doing fine, regular exercise and good diet help a lot. Do what doctor prescribes. Don’t become internet doctor! Good luck.

[CocoTheAlphaCat]

Welcome to The Club, Yellowtail. I am about your age, and am into Year 5 from diagnosis with PSA over 400 and Mets on too many parts of the skeleton to list. There are no magic bullets out there (if there was a "secret cure" we'd all find out about it), but the triplet treatment path you are (probably) on is the right one. This place is a super resource for information (pay attention to Tall Allen); you'll soon find that the mortality graphs you have undoubtedly already found are merely summations of data points. We are each a data point, but nobody knows where one will wind up on the graph. Speaking of which, here is a link to an essay from Stephen Jay Gould, who was diagnosed with a different cancer that showed a median lifespan of 8 months...he lived for about 20 more years:

journalofethics.ama-assn.or...

[Professorgary]

Lupron, then after 15 months abiraterone was added. Mets in nodes, bones and lungs. God bless.

This is a high Psa.

[j-o-h-n]

Greetings Yellowtail.

Good Luck, Good Health and Good Humor.

j-o-h-n (Happy Birthday America)

[swwags]

Hell buddy, you came to the right place and you have a long road ahead of you. I'm 9 years on with this mess. Hard to relax I know, but, as you learn more and become an expert on your disease, you gain a positive attitude. Lots of helpful gents on this forum. Just keep telling yourself you got this.

[Kaliber]

welcome to the party Yellowtail , boy howdy have you come to the right place. Medical knowledge and camaraderie here the top drawer. Lots of souls “ just like you “ … everyone here “ gets it “ brother. Nice to meet you.

❤️❤️❤️