Sue, I am so with you on this one. Completely understand. I voiced the same in an email to our main oncologist. He will not answer, although he has been pretty fast to respond to anything else I have sent. We are being sent here, there, with no actual plan of action. For example, following Quincy's suggestion, I have requested a BDT.
I get that there has to be flexibility. Our friend experienced uselessness at the hands of the Cancer Agency as well as the same lack of compassion. He is a very determined guy and found a urologist who made sense to him and who actually plans. We know this urologist...had him to begin with and did not like his know-it-all manner (because he didn't!) Our friend is well aware of this but, unlike us, had experienced the doctors staffing the CaP program at the cancer agency. He ended up with this urologist and he is doing a very fine job utilizing diagnostic procedures that the cancer agency cannot as it is publicly funded and completely stifled. These diagnostic procedures were previously scorned when I mentioned that Dr. Myers was using them. I feel that starting with this urologist and then being referred by our local oncologist to the Cancer Agency was a mistake as we are not trying to get back with him to see if Don can benefit from the same testing. We were referred by our GP on Friday as two years have elapsed. So we are going from this doctor to that doctor, to another doctor just to compare therapies and make our own choices it seems. My background includes supplying doctors with information on studies and what-not. Whatever happens to the poor patients who do not have a medical background or any background that would help them research? (I suspect they become those statistics that the Cancer Agency loves to bandy about when giving out prognoses...)
Keeping you and Dave in our hearts.

That is exactly what happened to Don, Sue. He turned yellow and could not walk to the end of the block. He continued to lose weight following the 40 pounds in three months when no one diagnosed his head pain as being due to mets. He is currently putting on a very small amount of weight weekly but it is challenging. He only seems to be able to eat unhealthy stuff. Plus, his PSA soared. However, he seems to have a lot of energy now. He spends a few hours every day on a reno that he started (with the help of others) but it is remarkable to see such an improvement. We are trying to get someone to see our POV on removing the prostate but all I keep hearing is something along the lines of "We don't do that due to side effects." I'd say spread to neighbouring organs was a pretty big side effect. We do have a urologist in mind over the border but, again, $$$.

Well today Dave has surgery for what we hope is stricture blocking urinary flow. This is the second time in less than a year for this surgery. Last year he had this and then he needed the laser turp. So I am really hoping that we are not just doing this again and up needing instead to take some of 90% cancerous prostate away from blocking uretha. I know they talk about QOL if they were to remove the prostate but I question do they know what they are talking about. With it gone in the first place Dave wouldn't have spent months running to the bathroom 30-40 times a day and 8-10 a night. This time urgency when you are breathless and just getting there is not easily done, I just hope they never come out with a report a couple years down the road that says yes we should be doing prostectomy when at Daves initial diagnosis. We had just said last week just 1 appointment for the usual monthly firmagon and xgeva shots on Thurs . Yesterday was spent at 2 different hospitals, our urologist office doing paper work pre surgery and getting all the pre op procedures done. I thought we did well we left here at 7:45 and was home by 12:30!! But for Dave that was long enough!! Thoughts are with all today fighting and living with PC. Special thoughts to Sal and Ted today.💙

I am wondering about Ashley as well. Regarding prostatectomy, Sue, two of our local friends had it done at Peace Arch (a smaller regional hospital) through the same doctor and not one side effect for either of them...mind you it was early stages. Both are G9. TednSal are always in my thoughts. Sue, glad all went reasonably well for Dave. I am still feeling iffy about the sudden absence of ADT for Don. He isn't concerned at all, even with PSA rising, because he feels good and can get things done. I know the docs we consult with in the US would be completely against this. Both docs here have credentials as long as my arm and assure us that in their clinical experience, even their G8s and 9s have done no worse than any other patient even with high PSAs. It flies in the face of my understanding and I will make sure he goes back on it, or Zolodex instead very soon as it is my understanding there will still be a population of cells that remain androgen responsive. And there is NOTHING he is taking to deal with the prostate itself, just the bones. Maybe his blood test results tomorrow will change his mind. x

Wishing you and Dave only the best today, Sue...

Thinking of you all as you struggle through the options and try to make decisions.
My best to you all. You are the women that inspire us with your courage and strength.

Hi Sue,
How is Dave feeling today? I just read your post on his stricture surgery, I think I might have to look into that as well. Frequency has become a real problem as well as nocturia. I'm glad that C sleeps soundly and that the bathroom is just steps away. . . Q

Glad things are going OK for you and Dave, Sue. Good advice about the bladder emptying. Your neighbours sound great. Things are much the same here...waiting for the Firmagon nurse to get back to us (four days now). Don's backache, which was not too bad to begin with, seems to be better. He looks even thinner though, which concerns me very much.

Moonlitnight, re weight loss. Yes that is of great concern. Dave is on a drug called megace (megestrol) since Dec of 14 . This is actually a womens tumour treater for breast or uterine cancer. In men it is supposed to help with appetite .they started Dave at 160 mlg and he is now taking 320 mlg a day. I know it sounds unhealthy as heck but if he wants chocolate cookies thats what he gets. At pre op he has lost a couple of more lbs. If he does go on jevtana after the xofigio I know there could be a massive weight drop again. Our freinds in the States who have been on that jevtana for 25 treatments has lost 40lbs on it. For Dave he is tall at 6 ft and going down to 150 lbs would bring him to the weight he was when we got married and he was very skinny then. I don't know if you see pallitive care for your cancer control but however looks after that aspect of the cancer I would ask about that.
The feeling of being cold all the time is pretty bad right now and I wonder if its a side affect of the xofigio? I think I have read somewhere that it is a side affect of radiation so this being radiation delivered at a diffrent level makes me wonder.
Any how I wish some how we could get past the needing of a 3 hour nap as its not leaving us alot of time for living.

Hi ;
Well pallitive care appointment done on Thurs. The time went down to 2 hrs and 25 minutes from the 3hr and 25 of Feb. Still far to long!! Going to try next week lowering Hydromorph to 18mlg x2 and then down to 12mlgx2.the following week. Never brought up anti depressants with the Dr but he is phoning here next week and I think him and I will be having a chat. Most of our time is spent waiting for him to show up and did find out they get so far behind because the are always taking patients for same day appointments when they phone in. Next appointment will try a morning approach and if that doesn't work the I think i will switch Daves care over to the family physcian for pallitive care . We are driving a hour and a half to get there and the appointment time is supposed to be ours and if they do not go by appointments we will just "show up "" as well when we are in the neighborhood. Very frustrating to say the least. They did bloodwork while we were there just in case levels are low and a transfusion is required before xofigo #5. So will see what psa is doing. Hopefully going down!

Sue,
That is just way too long to wait, they should know that ,them being palliative care Drs. I agree with you about going to your GP. On ADs, I'm a big believer, I've been on Cymbalta for over 7 years and it definitely helps my mood and outlook. It's also effective in treating neuropathy. . . Q

Well psa up by 505 and is now back up to 2,800 😡 and will have another lab done again on Friday. I know what you mean about leaving the prostate In and we just asked that question again to the urologist when Dave needed the urethascope and cystiscope .NO yet again reason being QOL ! Like we actually have that ...really! I picked up a handi cap sticker for Dave because he can't get out of a chair and walk 2 ft .He is still so very breathless and yet they say and tell us its not in lungs but higher PSa is showing worsening Cancer. That pallitive cares take on it today. I don't worry psa jumps of 10 maybe 20 but 500 in 3 weeks is pushing it. With xofigio I knew its not about psa but right now we are really not looking after any part of the problem and because doxetaxel and xtandi didnt work either months have passed and all I feel they are doing is watching it grow...just like watching paint dry ..slow and steady! I know Daves wants to complete the 6 xofigio Injections but not zure if the oncologist will put him over to jevtana as I do not see waiting months for scans and mets to worsen.
Moonlitnight my email is daveandsuemather@yahoo.ca. .
How is Don doing with putting on some weight ? Thank you and Quincy for mentioning that drug for Dave I know he could certainly use something to take the edge off . Tomorrow is his 64th BD ..dinner out at his favorite restaurant. Keep well every one
Sue

Moonlitnight;
Sorry to hear Don still not gaining weight. I still have Dave on Boost high protein and gator aid. He must be sort of regaining some appetite as he somehow finds snacks for himself. I really do think that Xtandi was what did it for Dave and it has to stay far too long in the system. It is a good thing I keep track of side affects because he totally forgets what has happened and when.He has enjoyed the odd beer when he watches hockey and I think it helps him unwind a bit to . It is never more than just the 1 .
Yes his Psa terrifies me as I think his is the highest sustained number of any of the guys posting on here. He never complains about feeling scarred but I know he feels nothing good is really slowing his cancer down.
The next thing up for prostate I think will be some sort of virus immune therapy and I have already talked to yhe oncologist about what Ottawa is doing with measles vaccine and hopefully they try that on PC soon.