WHAT'S NEXT? I am posting this for "... - Advanced Prostate...

Advanced Prostate Cancer

17,690 members21,788 posts

WHAT'S NEXT? I am posting this for "Running-on-Empty" (with his permission).

j-o-h-n profile image
46 Replies

Diagnosed 06/2017 Gleason 9 PSA 30.4 CT scan & Bone Scan / cancer contained to the prostate 97/2017 referred to Oncologist Elegard injections every three months ( still take them) Aug 2017 / PSA 6.9 Sept 2017/ PSA 2.4 Nov 2017 / PSA 1.2 Feb 2018/ PSA 0.94 May 2018/ PSA 0.16 20 Radiation Treatments July to Aug 2018 Oct 2018 PSA 1.8 Nov 2018 PSA 2.8 Jan 2019 PSA 4.2 Feb 2019 PSA 6.4 March 2019 CT & Bone Scan Showed Mets to t-9 ( spine) t-5 (spine) Lungs 4 Mets (4mm 5mm 7mm & 7 mm) Medical Oncologist prescribed Fluteamide April 2019 PSA 18.8. Appt with Medical Oncologist again April 9th Tuesday Hoping for Zytiga & Prednisone Oncologist reduced Prednisone to 5 mg no Zytiga . May 1 /19 PSA 12.6. HORRAY !! May 26th PSA 18.8 June 26 PSA 20.8 Back is sore . Trying to remain active with numerous rests in between . On April 24/19 started a strict Keto diet to try to starve the cancer . 20 lbs down and no idea as to whether or not diet is helping . Next Oncologist appt is July 31/19 with PSA just in the 26th. What next ? Xtandi ? What a roller coast of emotions . 81 this month and was hoping to live many more but I have my reservations about that now.

Running-on-Empty.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 07/02/2019 10:25 PM DST

46 Replies
LearnAll profile image
LearnAll

What a tough journey..soldier !! We all are in the line...the minute we are born...we start to die..but we are not aware of it..Cancer suddenly makes us aware of this ultimate reality of life...the inevitability of it.. time and again...members on this forum have stated that th ere is no way to predict how many years we have in our tank...fuel is still there...you never know how many more miles it can go....lets not lose hope ...you make so many people smile with your funny posts...bring joy to many members and their family members...My heartfelt best wishes for your good health...

Running-on-empty profile image
Running-on-empty in reply to LearnAll

Thank you .. definitely a waiting game and not too sure who will crack first me or my dedicated wife . So strong on the outside but inside we are both dying .

LearnAll profile image
LearnAll in reply to Running-on-empty

The trick is to pack LOVE for each other 2 times in each day...that's how we can prolong love life even if we have half as much time left as other men of our age...communicate. support and lovingly interact with each other as this disease is tough on both...man and his life partner.

Running-on-empty profile image
Running-on-empty in reply to LearnAll

We are connected yet struggling knowing what the future will hold . For now we are grateful and living every day to the fullest .

in reply to Running-on-empty

Oh yah!

in reply to LearnAll

Pack it in! 😎

in reply to Running-on-empty

Who’s going to crack first ? Me or the wife . Hilarious if not true .Living APC is a pressure cooker life . We hold on as long as possible . Good luck 🍀

NPfisherman profile image
NPfisherman

Why they didn't get him on Zytiga in October 2018 or before is the real question.....

I would go with Zytiga or Xtandi and see how he does....At 81, he may not do well/ survive chemo.... Somebody set on this for too long.....dang...

Don Pescado

Running-on-empty profile image
Running-on-empty in reply to NPfisherman

It’s frustrating to have to wait for the next Oncologist appt in order to find out what she will prescribe or not ?? She did say there is no reason to do another CT scan once you know it has spread . Grrrrrr!

Could the cancer have shrunk ? I can only hope but if she says no CT it’s NO . I attend a support group in my small town of which I am ( the worse off) the guys are the very best !! I am so lucky to have them in my life ..

NPfisherman profile image
NPfisherman in reply to Running-on-empty

I would contact them and demand they do something now...where do you go for your MO? To sit there knowing for months that your PSA was going up and doing nothing....I would want to know why they did nothing....Zytiga or Xtandi....now....Why did they not do Brachy Boost therapy initially? That may have resulted in a cure...This sounds like what my Urologist said..."We'll get you on Lupron and you'll be fine...." I knew that was BS... I went to Cleveland Clinic and got on Lupron and Zytiga fast......6 weeks later I had stereotactic radiation to my one bone met..... Good luck.... I might even look at some clinical trials.... Take care....

Don Pescado

Hirsch profile image
Hirsch in reply to NPfisherman

Don.. Urologists are surgeons and don’t take on medical oncology issues other than Lupron and or other Firmagon. Only recently have some of them arrived in the 21st century and will refer to oncologists

NPfisherman profile image
NPfisherman in reply to Hirsch

One of my friends goes to a Urologist named Dr. Karnes--affiliated with Dr. Kwon at Mayo--they are much more aggressive than just Lupron or Firmagon....it just varies I guess, but unless they are the more aggressive types--knowledgeable aboiut treatments, then one should get with an MO that specializes in Prostate Cancer IMHO---the MO that I see at Cleveland Clinic specializes in Urological Cancers only... When we talk, you can tell he is up to date on stuff. I hope Cleveland Clinic renews his contract....A little worried to say the least....If they don't, I may be off to Johns Hopkins...

Don Pescado

Hirsch profile image
Hirsch in reply to NPfisherman

A busy g u oncologist is really the route to go once one has been biopsied and or operated on. I had to educate my young otherwise competent urologist about the efficacy of abiraterone. Duh

in reply to Hirsch

Surgery is where they make the big money . True !

NPfisherman profile image
NPfisherman in reply to Running-on-empty

Are you at a Center of Excellence? If not, find one close by and change over if you like the new MO.. Location??

Don Pescado

Running-on-empty profile image
Running-on-empty in reply to NPfisherman

We are located in Ontario, Canada .Our nearest Cancer Centre is 3 hours away . Teleconference is how we roll up here . I saw my Radiation Oncologist while I took my 20 radiation treatments last summer and my Medical Oncologist I saw once in person and now just Teleconference.. it’s waiting with hope . To start over with a new medical team would mean another long wait I am afraid .

NPfisherman profile image
NPfisherman in reply to Running-on-empty

Mayo is in Minnesota...might consider that...Prostate Cancer Canada and Princess Margaret seem to be involved in research....while the idea of change is scary, the idea of staying with someone that isn't treating your issue and should be is scarier....

Don Pescado

erjlg3 profile image
erjlg3

Heartfelt healing wishes. Hoping you find something from this wonderful group to kick it down Running on empty!

🌼Jackie

Running-on-empty profile image
Running-on-empty in reply to erjlg3

Thank you and this group has been more strength and knowledge then I could have ever imagined.. thanks to you all

in reply to erjlg3

🌹

Magnus1964 profile image
Magnus1964

Sorry to hear John is going through all of this. I had a bad experience with flutamide.

Has his doctor mentioned casodex? It's an older ADT drug with less side effects.

LearnAll profile image
LearnAll in reply to Magnus1964

Magnus...I also have a question about Casodex..I remember you had really good response to casodex ..I need your opinion. I was prescribed just casodex 50 mg a day when my PSA initially was 830 ...within 30 days on casodex..it dropped down to 99. Lupron and Zytiga was started 2 weeks ago with rec to stop casodex. I feel like I should continue casodex as it did great job in lowering PSA. Should I continue casodex along with Lupron and Zytiga?

Magnus1964 profile image
Magnus1964 in reply to LearnAll

I agree, there is no reason to stop casodex. If it is working so well why move to a more expensive drug. Adding Lupron would not be a bad. Idea. If casodex fails then you could move on to zytiga or xtandi. These ADT drugs all work in different manors.

Have you had radiation and/or chemotherapy?

LearnAll profile image
LearnAll in reply to Magnus1964

no..i was just diagnosed 5 weeks ago. Gleason 3+4=7 both sides. Multiple bone mets..No symptoms except low backache. Never had Radiation or chemo.

No other disease. Vegan. Walk 4 to 6 miles a day.

My query is IYO...what is the harm in taking all 3 (casodex, Lupron and Zytiga)?

Magnus1964 profile image
Magnus1964 in reply to LearnAll

There is no harm taking all three. My point was if casodex is working so well. Why add zytiga now. I am assuming there are no plans for surgery, maybe chemotherapy or zofigo.

j-o-h-n profile image
j-o-h-n in reply to Magnus1964

Thanks for the concern... but I posted this subject for the user "Running-on-Empty", see top of page.

BTW you're Magnanimous 1,964 times...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/03/2019 5:45 PM DST

in reply to j-o-h-n

👍

LearnAll profile image
LearnAll

magnus...true..there are no plans for surg,chemo or zofigo for now . I have almost no pain or other urgent issue...just waiting till 90 days on this triple ADT combo to see if PSA comes down to near zero. Thanks for reply.

in reply to LearnAll

No pain is awesome . Great for you 😎

Tall_Allen profile image
Tall_Allen

With lung mets, he should consider docetaxel. Why "no Zytiga"?

LearnAll profile image
LearnAll

try to celebrate...feel..connect deeply with loved ones...cancer suddenly brings depth to our emotions as now we are living very close to the ultimate reality...more awake..more aware and more wise..about what truly matters and whats truly meaningful ..cancer can provide us chance to live a deep.meaningful remaining life as lots of silly, unimportant things start looking irrelevant..

in reply to LearnAll

Everything comes into focus . True 😎

j-o-h-n profile image
j-o-h-n

Thanks for the concern... but I posted this subject for the user "Running-on-Empty", see top of page.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/03/2019 10:05 PM DST

tallguy2 profile image
tallguy2

Wow, I am very surprised you are not on Zytiga or Xtandi. You have options!

Running-on-empty profile image
Running-on-empty in reply to tallguy2

Hopefully soon .. appt with Oncologist on the 31st Xtandi will begin . Next PSA is Wednesday 🤞

j-o-h-n profile image
j-o-h-n

Never mind Lulu.... I was befuddled for a moment. Ignore my post of 10:05 PM.

Thanks,

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/03/2019 11:14 PM DST

Running-on-empty profile image
Running-on-empty

I forgot to mention my testosterone is at 0.01 and has been since June 2018 . That number has not changed with the monthly bloodwork .

j-o-h-n profile image
j-o-h-n in reply to Running-on-empty

I just received your post to me today 07/22/2019.

Okay... thanks for the info...

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 07/22/2019 3:53 PM DST

SsgCulldelight profile image
SsgCulldelight

What up John, srry I haven't been in the forum for a while, keep going man, do WHAT YOU LOVE, and don't give your psyche negative energy about your condition. Can ya still walk a few blocks? Do ya like beer? Whatever it is in moderation, but I know that add long as you stay mentally engaged it taxes you bro. Im not sayin ignore your treatment drs, or anything like that, im saying continue to live.

j-o-h-n profile image
j-o-h-n in reply to SsgCulldelight

Thank you Sarge.... but the post above was from Running-on-empty, I just did him a favor and posted for him. Me? I'm still kicking and swearing... yep still fighting those tiny little bastards who are playing hide and seek in my glorious naked body... So where have you been hiding?....don't tell me in a PX store. Have a great 4th of July and thank God we don't have to march in the big Parade.... Hot as hell....

Happy Birthday Uncle Sam.

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 07/04/2019 7:29 PM DST

Collarpurple profile image
Collarpurple

❤️❤️🙏🙏

j-o-h-n profile image
j-o-h-n in reply to Collarpurple

OH

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 08/01/2019 11:09 PM DST

Collarpurple profile image
Collarpurple

You had me worried darn you

j-o-h-n profile image
j-o-h-n in reply to Collarpurple

Thank

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 08/01/2019 11:09 PM DST

Collarpurple profile image
Collarpurple

So sorry for running on empty❤️🙏

j-o-h-n profile image
j-o-h-n in reply to Collarpurple

you

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 08/01/2019 11:09 PM DST

You may also like...