Not too sure what’s next if anything - Advanced Prostate...

Advanced Prostate Cancer

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Not too sure what’s next if anything

Running-on-empty profile image

Please visit my profile as I have shared my journey . I am sure I have left bits & pieces out but please feel free to ask . My wife ( my rock, my advocate & caregiver) 20 years younger and I are afraid that this may be the end of the road soon . Thank you for adding us to your group . We are thankful in Canada 🇨🇦

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Running-on-empty profile image
Running-on-empty
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29 Replies
Tall_Allen profile image
Tall_Allen

Approved drugs you don't mention are Xtandi, Provenge, Xofigo and docetaxel. Many more in clinical trials.

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

Thank you, I will mention these at our Teleconference

Magnus1964 profile image
Magnus1964

Provenge may be the way to go. There are other ADT drugs.

Running-on-empty profile image
Running-on-empty in reply to Magnus1964

Thank you .. every day since I was diagnosed I have tried to learn something about this Cancer . One thing I know for sure is that no two are alike . We need forums like this to continue to educate ourselves,

Cosette100 profile image
Cosette100 in reply to Running-on-empty

I agree no two cancers are alike, thats why DNA samples and personalised medicine is the way to go.

I don't see you being at the end the road at all. Looks like you haven't done any second-line androgen deprivation therapy (Xtandi or Zytiga), Xofigo or any chemotherapy. I've done Taxotere chemotherapy and it's nothing to be afraid of. It is tolerable for most if you are decent condition. Good luck and don't give up!

ctarleton profile image
ctarleton

Welcome!

Prostate Cancer Canada keeps tabs on Canadian approved drugs for Prostate Cancer. Browsing their list might help as you gather your thoughts and develop questions to ask before your next consultation.

prostatecancer.ca/Prostate-...

(Note the "Information and Support" links at the bottom of the above page, too.)

Having someone with you during the meeting, and asking to record it, can be helpful, too.

Good Luck!

Charles

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

Thank you I appreciate all the suggestions.

Harry_B profile image
Harry_B

Hello. I endorse the 'don't give up' message. You have lots of approved options left (already mentioned) and some experimental options showing real promise such as radionuclear peptides and bipolar androgen therapy. Good luck - you will get good advice from this forum - generally better than your (single discipline) doctor can offer. Harry

Nicnatno profile image
Nicnatno

Running on empty means to me that you need to fuel up or get recharged. Im still on my first line of treatment and will be on lupron for the rest of my life. As our great men said earlier, there are still many meds for you to take and so much to live for. So realax, put your gear in to drive again and get ready to run in full.for a long time.

Nick

larry_dammit profile image
larry_dammit

Sorry to hear the monster is gaining on you, as I have read in this blog there are lots of treatments available to you , your age may prevent some but not all. Don’t give up I’m sure the guys will respond with a list of options here. 🙏🙏🙏🙏🙏🙏

dadzone43 profile image
dadzone43

You will always be a member of the group no matter where you are on your pathway. And we must celebrate our partners. They keep us whole.

Kevinski65 profile image
Kevinski65

I'm 7 years out on just Lupron and Xtandi. I'm in a clinical at NIH in Bethesda, look into NIH. See what's there.

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

Fill er up with high octane.... 81? you're just a kid.... listen to the gentlemen here. Only comment I can make and probably not relevant to you, but here it is. I'm taking Keytruda for a "lung" melanoma and so far it's working. Maybe it can for you. You'll be around for a long time "so change your ID to "FULLTANK".

P.S. i don' like people with a dash in their ID's especially two of them.👀

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 04/08/2019 1:33 PM EDT

Stegosaurus37 profile image
Stegosaurus37 in reply to j-o-h-n

Three is OK?

j-o-h-n profile image
j-o-h-n in reply to Stegosaurus37

hahahaaha - yes if they're mine...

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 04/08/2019 10:04 PM EDT

pilot52 profile image
pilot52 in reply to j-o-h-n

J-O-H-N I ran on empty about 30 years ago...ATC put me in a hold over Tampa Bay due to heavy traffic. would not let me proceed to Ft. Meyers. I was young and dumb...also fought a head wind the whole way...I sat there circling over the Gulf and they finally released me..On short final my prop refused to turn anymore on the tank my selector was dialed into....I hit the fuel pump switched tanks and she came alive..landed turned onto

the taxi strip and that one went dry...had to fuel the plane on the taxi strip and go and change my underwear...hit the bar at across the street from the FBO . Filled both the plane and me!!!! Blue Skies .......Sky King. ( still grounded for now)

j-o-h-n profile image
j-o-h-n in reply to pilot52

"go and change my underwear"..😊😊😊 At least they weren't empty.....

Blue Skies and Clear Visibility to you.

youtube.com/watch?v=sGZDwxn...

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 08/05/2019 2:07 PM DST

Stegosaurus37 profile image
Stegosaurus37

Lots of good advice from people who know a hell of a lot more than I do. But just remember, attitude is everything. When you're feeling down in the dumps there is one thing which always works. And it's easy and works quick.

Do something nice for somebody else.

Trust me; it's sovereign.

Running-on-empty profile image
Running-on-empty in reply to Stegosaurus37

The responses alone have done wonders for my attitude . I go forward with hope & suggestions tomorrow when I see my Oncologist, stay tuned :) cup May be 1/2 full after all .. thanks guys 🙏

pilot52 profile image
pilot52 in reply to Stegosaurus37

I have to disagree.....altitude is everything!!!! You can have a great attitude but with out altitude you can get yourself in a bind.....Have a great day ....Sky King. Cheers everyone going for a run.....its Monday!!!!

Stegosaurus37 profile image
Stegosaurus37 in reply to pilot52

The 3 most useless things in the Air Force: altitude above you, runway behind you and fuel in the truck.

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

Update .. teleconference yesterday with our Oncologist as PSA tripped in one month . Dr says heart function is only at 30/35 % ( Echo Cardiogram) so Zytiga or Xtandi are not viable due to strength of heart . I am now on prednisone for 5 days due to a lung infection. Also bone density reveals that Osteoporosis is present . Suggestions ? Presently not taking anything for Cancer other then Lupron injections every three months.

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

I think I'd be inclined to try to get the best Cardiologist I could find together with my Oncologist either in the same room or a conference call for which they were prepared to speak ahead of time, and ask them to help prioritize the 1,2,3,... Options for the Heart & heart procedures/meds, and the 1,2,3,... Options for my castrate resistant prostate cancer tests, imaging, treatments, etc.

Jbooml profile image
Jbooml

Who's treating you?

I'm a Canadian under rigorous care in BC

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

Our Medical and Radiation Oncologist are out of Sudbury Ontario .. Dr Mircano / Medical

Dr Want Radiation

Urologist/North Bay Ont / Dr Goldfarb

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

Do your Docs have Laurentian University affiliations...Im being treated by BC Cancers most aggressive lead investigator currently enrolling phase 2 Lu 177 theronostic trials for PSMA avid candidates..I do believe he's likely if not already expanding nationally...I can send you his email

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

I would appreciate that .

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

Finally got word back .. Doc does not have Laurentian affiliation. Next PSA is Wednesday, family Doc ordered another CT for this week .. due to increased spinal pain and Oncologist apt is 31st of July .. hopefully prescribed Xtandi after Oncologist appt . Fingers 🤞

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