Shortly after the meeting with my new ONC I had a lesion on my C7 radiated. 13 weeks later I still have a cough. For 7 weeks it was very bad. Had trouble breathing during coughing fits and once even had to pull my car over and throw up. Now it is more of a nuisance. Also my neck swelled up bigger then my head.
I now am awaiting my next appt with ONC over my blood results. My PSA has gone from 10.4 to 55.2 in the last three months. I had a Lupron 4 week injection in August but it doesn't look like it helped. My testosterone was 0.5. I don't know what that means in Canada, but it seems it is still low.
Dr. has told me I do not qualify for any current trials here. Of course traveling during COVID is pretty much out of the question. (My beach is still waiting for me.) He has said he doesn't think Carbazitaxal (sp) will help much looking at my history.
My C7 is beginning to worsen slightly. I can still numb it with Morphine and Cannabis oil. Hydrocortizone doesn't make a dent in the pain.
So here I am. I intend to continue to post while my situation deteriorates. Seems this is the final mile. The ONC's said in August 12 months. It is now 9 months (my ONC said the diagnosis is still the same since my last visit.) The one thing I question is that it seems to me my Doctors have abandoned me. Is that usual? I rarely speak to them and actually had to call my first ONC in Canada (they seem to work in teams and you pass from one to the other) to see what was going on. Just curious if anybody else has seen this after you go into Palliative care.
Thank you all for listening. I will continue to document. Not much else to do.
Written by
dpowellnt
To view profiles and participate in discussions please or .
Hey brother ... take time to look at my “ workarounds “ reply to shooter1 in the amlodipine post ... where I discuss various QOL improving “ workarounds “ for us APCa guys.
💪💪💪👍👍👍❤️❤️❤️
I’m sorry about the pain and suffering . It’s amazing how much we can suffer . There s no limit to it . All stage #4 treatments are considered palliative care .. We are all deteriorating at different degrees ... I’m sorry that the doc s are bailing on you .That s not nice either .. Lupron and morphine ? Mama Mia! What a combo! My doc gave me a bs limited time left on this earth prognosis early on . We cant listen to that . APC and treatments are a brutal ride . Cannabis oil is my friend also . Take care
We are doing everything we can. No more can be asked ... I asked myself “could I do more”? Yes we can. We, are holding you to the promise ... and your next entry will be another testament to help us do the right thing.
Costello and Renty have been publishing on this for 20 years (zinc and citrate in prostate cancer). No clinical studies, just a single case report, so yes an unproven approach.
But: 1) low risk, unlikely to have major side effects 2) ready available 3) low cost 4) legal!
And you can do it in parallel to whatever mainstream choices you make.
Search for an oncologist that will take up your case and work with you, hang in there. I know this may not help but be strong and positive in mind and body.
I don’t think your situation with unresponsive docs is all that unusual. I’ve had more “put downs” from my dads onc team than I care to mention. But I remain a firm believer in “squeaky wheel gets the grease” AND that most time frames are a bit arbitrary so if you have energy (and maybe a co-pilot) maybe keep being proactive in getting more timely answers or information from your care team. Fingers and toes crossed for you and sending many wishes for comfort and pain relief.
Agree with Brackenridge and others. Directly confront disengagement from the MOs. Say Hey don’t give up on me while I’m still fighting. Let’s look for another option or trial. In the meantime maybe take your copilot and go visit your beach.
A most difficult question. I don't have an answer. Sorry. I also rarely speak to my doctor. Maybe a redo of Taxotere? Jevtana (even though the dr. doesn't think it will work). Take someone with you to next appointment? A loud, pushy ex-girlfriend would be best. Demand some answers. Take care. Best of wishes. Monte
What you’re describing is inexcusable....you’re the patient that the system is meant to treat most vigorously. Can you start a new relationship with a local GP advocate to promote your therapeutic needs. I’m a Canadian as well and having not reached CR am apppalled
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Pain in the Prostate (worse after TURP)
Median time from BCR to mets to death, without additional treatment.
Ten year battle is over.
Question about bicalutamide
