Hello from uk: 11 years now still here... - Advanced Prostate...

Advanced Prostate Cancer

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Hello from uk

durango profile image
12 Replies

11 years now still here  I am 73 years of age and have led an active life  diagnosed in 2005  psa 4.2 gleason score  4+3=7  completed 6 months of neo adjuvant casodex followed by brachytherapy in march 2006 ,febuary 2014 psa 10.84 ct demonstrated recurrence at bladder base and seminal vesicals commenced degarelix injections once a month, in may 2014  psa dropped dramatically but now it,s on the rise again over the past 3 years I have  had problems rushing to the toilet  mainly at night and to be up 5 to 8  times during the night has become quite common for me I am also taking a tamsulosin 400 microgram capsule once a day and I am also on vitamin d tablets    I was put on  betmega to help stop the constant rushing to the toilet but for me it made my situation worse  my nurse is starting me on a daily casodex tablet due to the recent rise in my psa over the past 4 months   I was given a testosterone blood test on the 14/03/16 it came back  0.2   I will be seeing my consultant on the 31st of this month if anyone has any ideas as to the questions I should ask I would be most grateful

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durango
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12 Replies
PhillyProstate profile image
PhillyProstate

Regarding the frequent need to go to the toilet at night.  My Malecare support group here in Philadelphia talked about different ways to help with that.  The one I like best is to keep a urinal by the bedside, so I don't have to break my sleep too badly by standing, walking, turning the bathroom light on, etc.

durango profile image
durango in reply toPhillyProstate

long time since I was in Philadelphia march 1963 to be exact I have a toilet close by my bed ,to be honest I tend to just get on with it now just hoping that one day it will get better but I make you right about getting up at night  as back in august 2014 I was that shattered with being on injections that I fainted in the toilet ended up in hospital for a week I fractured one of the vertabraes in my spine good advice though thanks for taking the trouble to get back to me so quickly  thanks for the advice best regards Dave

Ibdcaptn profile image
Ibdcaptn in reply toPhillyProstate

I had salvage prostatectomy on Oct 12 2015. Now with PSA of .008, my main challenge is U.I. In a few months I am scheduled for  mechanical sphincter.  In the meantime I just heard about a new product called "Men's Liberty", medicare approved. It is essentially an external catheter, that straps to your leg. Mine should arrive in a few days. I will give an update once I try it.

Joel

bhammel profile image
bhammel

Similar problems with night time urination.  Had Bracheytherapy with steel rods into bladder since missing rectum from previous colorectal cancer so location was a guess.  That I think burned urtethra area causing urination issues.  Trying to rectify problems got urosepsis from clumsy nurse I think (caution) and almost died. Then arrived next present, kidney stones, and will have second lithropsy (sp) next week, very painful.  No help for urination found so I suggest jockey shorts and male diapers and live with it.  Attempts to solve this urination problem has only caused issues.

durango profile image
durango in reply tobhammel

I make you so right with regarding live with it, it does no harm to try to find a medical solution but I think I could waste my life making myself miserable feeling sorry for myself I have tried everything that I have been prescribed  and nothing has worked in fact I have found some of the medication has made it worse so it can only be chin up and chest out oh and as you say make sure make sure you wear jockey pants and diapers if and when you feel the need best regards and many thanks for your advice Dave .

bhammel profile image
bhammel in reply todurango

If stone crushing this week works I plan to get my 77yr old butt back on the golf course where a good tree is nearby and toilet to change Ostomy pouch is available as my group is missing my contributions of prize money. An aside; get Prolia injection each six months for bone strength (Hopkins study) but check for ONJ risk if you have any dental work done. All the best. Bob.

JoelT profile image
JoelT

Since your PSA was continuing to rise while you were on degarelix you are now what is called castrate resistant.  The intervention of the Casodex is a good idea.  Given the current situation you have a number of possibilities to discuss with your consultant.

1-  A drug called abiriterone acetate (aka Zytiga).

2-  A drug called enzaludamide (aka Xtandi).

Both of these drugs are now NICE approved.

It isn't clear which drug is superior to the other, but I do have an opinion about one over the other and have written about it on the advanced prostate cancer blog at:

advancedprostatecancer.net/...

However, this is just my personal opinion.  You should take the time until you meet with the consultant and research both of these drugs so that you might have a good and informed conversation.

Also, ask about the timing to start some bone supporting drugs like Zoladex (zoldronic acid) or Xgeva (denosumab).

Joel

durango profile image
durango in reply toJoelT

Joel thank you so much for your reply you have given me plenty to be getting on with before I meet up with my consultant on Thursday best regards Dave .

durango profile image
durango in reply toJoelT

Joel I have been taking a weekly tablet called Alendronic Acid for the past 18 months along with a twice daily tablet called Adcal-D3 would you know if this amongst the bone supporting drugs that you are referring to regards Dave .

JoelT profile image
JoelT in reply todurango

Dave,   Yes they are. 

Alendronic acid (INN) or alendronate sodium (USAN) is the same as Fosamax and is a bisphosphonate drug (as are the drugs I mentioned) used for osteoporosis, osteogenesis imperfecta, and several other bone diseases. It is often used in combination with vitamine D which is a major component of the Adcal-D3. 

Joel

Arcticfox44 profile image
Arcticfox44 in reply toJoelT

Hi Joel -- Zoladex is goserelin acetate, isn't it? (Not zoledronic acid).

JoelT profile image
JoelT in reply toArcticfox44

Yes, you are correct.   Zoldronic acid is also known as Zometa.

Joel

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