Newbie …

[Sillyolbugga]

Hi guys. Just joined … I’m 56 and have recently been diagnosed. Gleason 9, mets in hip / lower back.

Small cell mutation too. So about to start both ADT and chemo.

Does anyone have experience of this?

[MoonRocket]

Welcome to the group (PCA) no one volunteers to join. Sounds like you're going to start triplet treatment ADT + Darolutamide??? + Chemo.Did your Medical Oncologist (MO) discuss what type of chemo give the small cell findings?

Learn has much as you can about your cancer and the plethora of treatments. You'll want to have knowledge so you can understand why certain treatment are offered and some are not. The ordering of treatments can be important also.

If you are not exercising, start now. You'll get a steady drum beat about exercising on this forum. Think of it as another form of treatment. Too little no good, Too much no good but the right dose of exercise will make the treatments tolerable and impact Quality of Life.

[Sillyolbugga in reply to MoonRocket]

Hey Moon R that’s really nice of you to reply / welcome. I’m doing ok, but it’s all still a bit daunting. Will be pleased to get chemo started (and through!)

So it’s carbo / etoposide for the small cell component + ADT (derugalix) for the adrenocarcinoma (if I’ve spelt that right)

[MoonRocket in reply to Sillyolbugga]

Yeah...the ADT it's also know as Firmagon.

Any place to add another 2nd line ADT? Zytiga (Abiraterone), or Nubeqa (darolutamide) after you start chemo?

Not sure what is and what is not approved in the UK.

[skiingfiend in reply to MoonRocket]

Hey moonrocket,

I think he's only gonna get firmagon+chemo (carbo+etoposide) to start. After that, I couldn't say it's a mystery to me right now. I guess it's gonna depend on how he responds to the chemo.

That's similiar to what I am on now with small cell but I'm probably worse off because of the liver mets.

I was on firmagon+appalutamide, but I've been ordered to stop the Apa a week before the chemo starts.

The 2nd line ADT interferes with the chemo basically by hiding the cancer cells from the chemo. The platinum based chemo is particularly effective against small cell.

That's what I understand. Or, you could just listen to tall_allen below.

The OP should go review my recent post where we talk about small cell, and look for the discussion on chemo survival kit.

healthunlocked.com/advanced...

[MoonRocket in reply to skiingfiend]

I wonder if your diagnosis included the small cell up front, you would have started out with the (carbo+etoposide) + ADT and added darolutamide soon after....the situation your in now would have been avoided for a bit longer....all H2O over the dam now...anyway...good to see your in good spirits and out and about. I'm rooting you have good success with your treatments.God Bless.

[Sillyolbugga in reply to MoonRocket]

Yep. By the time of my diagnosis it was like that already - no symptoms of PC as such just a sore back / hip which everyone thought was owing to a motorcycle accident

The small cell element is unusual: 3 - 5% of cases, when it’s ‘de novo’.

So yes, it’s a lot. Glad to have found you all.

[Tall_Allen]

I'm so sorry to hear about your diagnosis. It's almost treated like 2 separate diseases. For the neuroendocrine component, they usually give carboplatin and etoposide. For the adenocarcinoma, they treat with triplet therapy - docetaxel + darolutamide/abiraterone. It's important to tackle this all at once from the start. If done sequentially, the cancer goes into a protected, temporarily-quiescent state (called senescence).

[Kaliber]

welcome to the group brother. I think you’ve come to the right place to “ get 1st rate medical knowledge and experience “ , Plus you are in a great place for stage4 aPCa friends - fellowship and camaraderie . QOL activity. Jump in whenever you feel the need. Lots of great guys and gals here.

❤️❤️❤️

[Sillyolbugga in reply to Kaliber]

Thank you so very much. I’m so happy to have found this group - I was feeling awfully lonesome.

Yep, that’s what my oncology said. A battle to be fought on two fronts. Get on to the front foot and hit both with as much as you can as early as possible.

[Kaliber in reply to Sillyolbugga]

Love ya

❤️❤️

[Yadifan]

Welcome Silly. Sorry you have to be here but glad you found this site. There is a wealth of information and knowledge here. Along with a wonderful support system. You will find a lot of help with side effects here also. Best of luck to you and hoping your treatments are successful and tolerable.

[Sillyolbugga in reply to Yadifan]

Thanks Y. I’m already beginning to see that’s so, ✅

[MarkBC]

I was 55 at diagnosis. Also Gleason 9 with a few bone mets. I do not have the small cell mutation. I started with Degarelix and chemo - docetaxel. The monthly Degarelix injection welts up and hurts like a giant wasp sting for a few days. An ice pack helps. It really works well as an initial ADT. After a few months, I changed to Zoladex which didn't swell up and hurt. It is also given every 3 months so it's more convenient.

Chemo isn't fun but easier to deal with than I expected. It also worked really well to shrink the cancer mets. My PSA went from 103.0 at diagnosis to 0.17 a year later.

This forum is excellent. I learned so much from here during the first few months when I was struggling with the diagnosis and experiencing a lot of emotional ups and downs. I was diagnosed over 5.5 years ago. My PSA is undetectable. My bone mets have not been visible for a few years. My oncologist says I likely have several years yet to go. Best of luck with your treatment.

[Sillyolbugga in reply to MarkBC]

That’s great to hear! Well done you.

It was a blow being diagnosed with aPCa but then they called and told me about the small cell component too.

I’m on a trial to so when chemo starts I’ve a 50% chance of it being taken alongside Keyruba which is a check point inhibitor / immunotherapy drug.

It’s very encouraging hearing stories like yours - here’s to hoping.

[j-o-h-n]

I'm sorry sir............... but we charge attorney's........ by the hour.............................................Keep posting anyway, best site for Pca help...........and camaraderie.

Good Luck, Good Health and Good Humor.

j-o-h-n

[GP24]

I would hope that the neuroendocrine part of the tumor has not yet spread and therefore radiate the prostate. The STAMPEDE trial showed that this radiation helps with standard PCa when there are only a few bone mets.

esmo.org/newsroom/press-and...

[RMontana]

OK, sorry to say 'Welcome' to the club! Wish like all of us that we had never been invited to join this select group...glad you are on line and asking questions...

ADT; its good and it works and it can save your life...understand what it will do to you. You wont hear much of what these Doctors talk about from your surgeon or RO...but if you need ADT take ADT...just do it with your 'eyes wide open.'

healthunlocked.com/active-s...

Get genomic testing...Decipher is the best and get this test done for your Biopsy specimens! It will tell you how aggressive you need to be in treating the cell types you have; Gleason alone wont tell you this.

healthunlocked.com/active-s...

Then decide on Surgery or Radiation (Brachy fits here)...there are other treatments but these are two most common...here is the best 'mano a mano' I have seen between surgeons and radiologists on which is better...listen to this a couple of times...

healthunlocked.com/active-s...

In the end make the best decision you can and document via a journal, why you made that choice...keep good notes. You will be glad you did. Time goes by and you forget why you decided to take an action. Later you beat yourself up if you dont know why you made certain decisions the way you did. More importantly, what information you had at the time you acted...it will help you understand how your progressed and makes for better decision making later...

Good luck...Rick

[davidjroberts]

It has been a year since I was diagnosed with prostate cancer, and it has been quite a journey. However, I have been incredibly fortunate to have the love and support of my wife and family every step of the way. Currently I'm on medications.