New Member "sue saddened wife" : PSA rising (3005) after two tx xofigio. What's next?

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Sue, It is so good that you made your way to this forum. So much support and such good advice and information. My husband started out with a psa that was frightening, almost 2000, but he has responded to different Hormone Therapy treatments. After 4 yrs it's on the rise again.
It will be good to know the results of this scans as you move forward. I noticed cabazitaxil was not mentioned in the treatments. My husband responded well to that. Zytiga, another ht, but your husband seems to have a cancer that is resistant to ht
Welcome, good luck, and keep posting!

@Struwwelpeter... Yes, and a few people are going to hear about this specific form of patient abuse. I've had enough of what is coming out of that agency. Our dear friend has heard worse - from the same place. He has been threatened and talked down to. I heard today of another incident. There is a sorry lack of compassion as well as knowledge. It is one big cushy union over there and the more arrogant and heartless you are, the further you rise. There are a number of problems including conflict of interest. They are now seeking yet another CEO after two left in three years. Serious issues. If we listened to them, Don should have been dead in August of last year. The promotion of doom and gloom is elevated to an art and is very damaging to the psyche.

I love Alfred Lord Tennyson. Grew up reciting The Brook! For men may come and men may go, But I go on forever. (Sounds like something from The Emperor of All Maladies...)

ETA Just heard back from Doc Myers (wonderful doctor). I advised him of the cremation statement and he responded with: FIRST THAT IS BAD PHYSICS. THIS IS A SHORT LIVED ALPHA EMITTER. :) Also, he recommends Xofigo with Metformin and a statin.

Thank you everyone for your wonderful insight.Greatly appreciated! Moonlight that is ridiculous treatment to you and your husband and was not only insensitive but totally clinical response from a complete idiot. I to just had a run In with the oncologist who runs the xofigio shots that Dave is receiving. We were supposed to have an appointment with him prior to the injection but when he walked In the room he askec Dave how are you , your labs are fine and you can go downstairs for the injection. The last oncology appt with regular Dr was Dec 3 that day it was Jan 13 and the standard treatment run is 6 injections. When I asked what the psa # was I was told he didn't have that , when I asked for a copy of the bloodwork he said he couldn't get me one ! Then
when I went to ask a couple of questions I was told he doesn't want Dave as a
patient and Dave is getting xofigio only as a favour...BUT ...Daves health card
got swiped on registering at the front desk meaning his time spent is the
same and paid just like any patient. So at that point I slammed my book with
questions! , WHEN he said I sense anger I turned to Dave and said this is not
the best for you and it is not In our best interests to not be given lab results
and you cannot afford to spend 6 months without a oncology appointment! ,
Next morning just after 8 am regular oncologist phones said oncologist from
the day before felt bad..WHY ? By 5:30 that day he at least had the guts to offer
an apology that would rate a score of10 out of 100 considering that he told us
basically what he said at the appointment. So we have a oncology
appointment on this Fri with regular oncologist after results of all the ct and
bone scan resultls are In from this Monday.Friday the bloodwork resuts will be
ours beforw we leave the hospital and oncologist appt. It doesn't change the
fact that a man with stage 4 aggressive cancer is not seeing a ocologist for 63
days. They are trying so hard to push us to palliative care and to be honest
Dave has been far worse since we started going there in Nov. He shakes
constantly almost like he has Parkinsons, his memory is horrible I have told
him things every 5 minutes and it never seems to stay with him! I am scared
he is only 63 and basically can't do anything at all.I am terrified to see the next
psa on Fri and I am bracing myself for a read In 5,000 or more So I have zero tolerance for neglect and incompetence. One day I will post how Dave came to be diagnosed with stage4 prostate cancer and a psa read of 80 .I have no trust in medical whats so ever. I have spent days researching PC from top to bottom. I could be close in getting webb doctorate degree and working towards my master's. Any how for all of here we count , we care for our men, and we deserve the respect of the professionals who's salaries we are actually paying with each visit. I dare any Dr to come and do for a week what most of us do. I double dare them to come and see what STRESS Is really like! Just maybe then us and our men wouldn't be treated so with the same insensitivity!

Hi gals, I am having similar experience, but just now looking into clinical trial. A couple of weeks ago we had a live chat session set up by one of the wives. Are you interested in chat?
Beth

I think I am losing it, I just read the stats in my previous post and thought, "Look at that! His stats are just like Don's...and he has been on the same drug regimen." Duh!

I told him you make her get that psa tested it is Nov 30 and the results read 80 but she still doesn't prescribe flomax, rapidflo, or anything to help ! Dave tells her he wants a urologist appointment. She tells him that day she has put in for one .BUT BY 10 days in poor Dave is going to the washroom 30-40 times a day and 4-8 times a night. I phone down to the office and I am told if I phone there myself he will get in quicker, I secure a Jan 4 /13 appointment with the urologist. We get a date of Feb 22 for a biopsey but on Feb 20 Dave suffers a terrible Dvt that postponed his biopsey until April 4. 6/6 cores cancer! 90% of prostate on 1 side cancer , side 2 70%. Bone scans ct scans are ordered . We go to quit her care. I ask her just why she wouldn't do a dre does she just not do them ..She tells me she does them all the time , when I ask her why not for Dave she tells us Dave Always LOOKED HEALTHY! , We think we are going to be better off with securing the Dr. .Our first appointment with him I ask if had been the Dr doing that physical would he not have carried out prostate screening and he said NO, I went back I asked him when he has his own check up does it not constist of Dre and Psa testing .He said has never had a physical never had a Dre or psa testing and has no desire!! I heard a 20 version that the office follows the Canadian task force guidlines that dont recommend screening..This is the first time I have ever heard of such utter and ridiculous rubbage. Quit him wrote letters of complaints to both Canadian medical governing bodies , still waiting to here back from college of nurses if there is anything that comes back with her neglect I have malpractice lawyer waiting. BUT WE have already lost everything .Daves cancer was advanced in May of 13 they wouldnt do a prostectomy or a series of radiation Life expectancy was given as 6mths to 3 years. If you say it fast that 1in 28 will die with aggressive prostate cancer like Dave has but it really is over 3men in a hundred ,300 men in a population of 10,000 and 3,000 men in a population of a large city of 100,000. It is going to be my husband , my daughter's Dad ,, our grand babes Poppa, and it all could have and should have been found soon enough that Dave had every hope in the world to live life cured of cancer. And it just keeps on happening and so many are so young, just early 40 and it totally discusts me the senseless murder really of our men!!

Yes we are east of Toronto. I see where your hubby did the xtandi short term as well. Dave did that for just 2 months and never did a thing?? Now because he had docetaxel with prednisone ..6 rounds that didn't work either there will be a struggle to secure funding for Jevtana (cabazitaxel) chemo as the xtandi was a 1 time covered drug . Hard to believe that government doesn't cover all in hospital chemo treatments? . We are being literally thrown to palliative care and we feel so strongly that Dave is we hope far away from requiring that. Actually since they have been involved Dave has gotten so much worse. Dave at first year of diagnosis did a prostvac drug trial. The lowest psa point was 7.5 in Aug /13 that is the time they should have hit it hard but they said he wasn't sick enough and we never even had a medical oncologist? That only came on board with care May of this year. What province are you In? Hopefully one with better cancer care and drug coverage. 😊

One hardly knows what to say reading the experiences of these people. It's so astonishingly, mean, passionless and arrogant that it is beyond words. These are not even good humans let alone medical doctors who are held to a harsher standard..and should be. At the risk of descending to their level I hope they suffer the dame indignity and cruelty at some point.

Hi ladies, I just had to join in as yet ANOTHER canuck whose husband's Dr. IGNORED his rising PSA and flags from the lab for SEVEN YEARS!!!! Yet another man at age 57 to be diagnosed with G8 Node + Pca.

I hate everything about our medical system. I KNOW with 100% certainty that at this point, I know WAY more then any Dr we have dealt with here.

Dave did everything right---starting at 50 getting his annual PSA and DRE's, unfortunately for us, his Dr never once thought it important enough to look at his results, or give us copies of the them. I was the one who went to the office last year and demanded ALL past test results, where I then discovered that the lab had been flagging his rising PSA for years!

With 2 kids under 6, needless to say, our "glorious FREE medical system" has failed us miserably!!!

It's actually scary how inadequate our system can be.... to add insult to injury I found a one inch mass in my axilla---my own Dr deemed it urgent for a mammo and Ultrasound....here we are 10 weeks later, the hospital has decided that I am too young to have Breast Cancer, so mammo was cancelled, and still waiting for that URGENT U/S!!!
Un-bleeping-believable.

Post Edited (ashleynfld101) : 2/2/2015 12:59:25 PM (GMT-7)

Being another pissed off Canadian health (care) user, I hear Ya! Best of luck!

Cheers, Doug