Prostatectomy + RT + ADT

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  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    #22
    Auxillary drugs

    Hi there,

    Friday afternoon I went along for a general review of my case and a look at my general health with my medecin traitant. After some time we agreed on the following:

    Irbesartan 300mg per day for the high blood pressure and its effect on suppressing prostate cancer supposedly through the RAA mechanism.
    Amlodipine 10mg per day for the high blood pressure
    Metformin two times 500mg per day for the blood sugar and the effect on suppressing prostate cancer through the mTOR pathway
    Atorvastatin 20mg per day for the slightly elevated cholesterol.

    So there we are, I am pretty pilled up, hopefully some of this will unwind when I stop the Firmagon!

    Best wishes,

    Georges

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    #23
    A year

    Hi everybody,

    I have updated my PSA timeline above, it is now a year on Firmagon with a zero PSA.
    Time for this penguin to jump into the sea at the end of September or time to stay sitting on the ice floe?

    Best wishes,

    Georges

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    #24
    The effects of ADT need to be verified at several levels

    Georges,

    I posted to you at another thread where you inform the result of the latest PSA of 0.05. I wrote this;

    "It is awesome to have a PSA at less than 0.05 ng/ml. Let’s hope for continuous similar levels after the Firmagon. I think that your chemical castration is now at its 18 months mile stone. This is a long period so I recommend you to check the functionality of those organs that involve the production of hormones for our systems to work well. The typhoid and the Adrenal glands have been replacing the testis to certain extent. The liver, pancreas and the kidneys in particular could have been affected. Checking the creatinine at 24 hours and an ionogram is good to understand how far Firmagon has affected you, apart from the great benefit in controlling PCa.

    ADT in my case assume some responsibility in the CKD case development. I detected its effects from the periodical test results (lipids, image studies and symptoms) I am doing since 2000. Diet influences much any situation."

    Well, ADT it is not at the 18 months but even one year deserves a check on the affected systems.

    Best,

    VG 

     

     

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    #25
    Analysis in September

    Hi Vasco,

    I am off to see Dr Pooh in a couple of weeks, I will put creatinine, sodium, potassium and calcium on the laundry list for the blood analysis at the end of September.
    She is pretty obliging and will agree to most things.
    I have done fifteen months now, four more to go and I will pull the plug!

    Best wishes,

    Georges

    PS: You gave me a laugh this morning, typhoid gland indeed, you mean the thyroid!

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    #26
    "Sounds like" technique

    Georges, you are right. Your laugh is one of the 2,943 laughs as counted by CSN on my entries. I also laugh later when I go back and re-read my posts. What the hell did I wanted to say? .................

    English is not my mother tongue and frequent errors occur if the "sounds like" seams OK. Well, ....... which biere de gardes do you like best?

    I owe you one.

    VG

     

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    #27
    No worries

    Hi Vasco,

    We all need a laugh in this cold blooded business of watching PSA, etc.
    All suggestions and comments gratefully received!

    Best wishes,

    Georges

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    #28
    Lab visit

    Hi everybody,

    I went down the lab for the usual round of blood tests today; PSA for Tigger and then a laundry list that Pooh and I put together.
    They are in dispute with the government so they are not working this afternoon so maybe I will get the results tonight on the internet or maybe tomorrow morning or whenever.
    Off for a drive this afternoon, try not to think about it.

    Best wishes,

    Georges

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    #29
    Georges Calvez said:

    Lab visit

    Hi everybody,

    I went down the lab for the usual round of blood tests today; PSA for Tigger and then a laundry list that Pooh and I put together.
    They are in dispute with the government so they are not working this afternoon so maybe I will get the results tonight on the internet or maybe tomorrow morning or whenever.
    Off for a drive this afternoon, try not to think about it.

    Best wishes,

    Georges

    Cross fingers it will be a

    Cross fingers it will be a celebratory glass tomorrow

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    #30
    Thanks Hew

    Hi Hew,

    Just raced the Mini up to Morlaix and back, hitting the Sport button at appropriate places and burning off the odd salesperson in a Clito or a Fart!
    My results are good; PSA is still undetectable, I just have to persuade Tigger to let me off the leash now.
    Blood pressure is 130/90, glucose, 1.18g/L, Hba1c 5.6%, cholesterol, 2.17 g/L, triglycerides 0.74 g/L
    Pooh will be stunned.
    Beer tonight and then steak and chips and wine.
    I might manage a run over to Vitré mid month, hard to see how I could get up onto the peripherique where the legal speed limit is 140 kph and a lot go faster!
    When are your results coming in?

    Best wishes,

    Georges

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #31
    Georges Calvez said:

    Thanks Hew

    Hi Hew,

    Just raced the Mini up to Morlaix and back, hitting the Sport button at appropriate places and burning off the odd salesperson in a Clito or a Fart!
    My results are good; PSA is still undetectable, I just have to persuade Tigger to let me off the leash now.
    Blood pressure is 130/90, glucose, 1.18g/L, Hba1c 5.6%, cholesterol, 2.17 g/L, triglycerides 0.74 g/L
    Pooh will be stunned.
    Beer tonight and then steak and chips and wine.
    I might manage a run over to Vitré mid month, hard to see how I could get up onto the peripherique where the legal speed limit is 140 kph and a lot go faster!
    When are your results coming in?

    Best wishes,

    Georges

    Congrats

    Congrats on not encountering Eyore in you adventures.....!

     

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    #32
    The three doctors

    Hi Max,

    I have Tigger on the 3rd of October, Pooh sometime after to discuss things generally and then maybe Eeyore after Christmas.
    We parted on bad tems last time after he told me that I would never be normal again.
    I thought this was a statement of astounding stupidity. It is obvious that after a non nerve sparing prostatectomy, 66 Gys of radiation and 19 months of ADT I am never going to be anything like normal ever again.

    Best wishes,

    Georges

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    #33
    Georges Calvez said:

    Thanks Hew

    Hi Hew,

    Just raced the Mini up to Morlaix and back, hitting the Sport button at appropriate places and burning off the odd salesperson in a Clito or a Fart!
    My results are good; PSA is still undetectable, I just have to persuade Tigger to let me off the leash now.
    Blood pressure is 130/90, glucose, 1.18g/L, Hba1c 5.6%, cholesterol, 2.17 g/L, triglycerides 0.74 g/L
    Pooh will be stunned.
    Beer tonight and then steak and chips and wine.
    I might manage a run over to Vitré mid month, hard to see how I could get up onto the peripherique where the legal speed limit is 140 kph and a lot go faster!
    When are your results coming in?

    Best wishes,

    Georges

    Hiya

    Hiya

    Congrats! Enjoy thst fluffy feeling of another milestone.

    I test in a month. I am getting twitchy but mainly because work has been horrendously stressful and I have used alchohol as a a crutch and that sets off the little demons of doubt in my ear.

    I hacve decided to go dry for as long as I cano now and press on regardless.

    H

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    #34
    Off the leash

    Hi everybody,

    That's it, I am off the leash for the moment.
    My last injection of Firmagon was on the 30th of September, it has a half life of around 28 days so it should be down to fairly negligible levels by the new year.
    So we will see what happens next.

    Woohoo,

    Georges

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    #35
    Good luck my man

    Good luck my man

  • Steve1961
    Steve1961 Member Posts: 625 Member
    #36
    Wow

    You Guys are scientists.  And seem to know more than a lot of doctors  And you mentioned there was no sign of cribiform . They mentioned on my biopsy that it was of cribiform .  Is why I think I am so screwed .I try hard to stay off this forum I have not been on it for about 10 days every time I come on it I read something that terrifies me. After reading this whole story I’m terrified if I have to go on ADT After reading all of the above it will probably kill me I will not be able to work I will be home all alone and I  won’t be able to sleep and hopefully I’ll just have a heart attack it’ll be over . I wonder if other people read this story and don’t make comments and get absolutely terrified like me I hope not but I bet they do . After coming to this forum and reading all these sad scared stories i think to myself there’s no way I can be cured but then again a lot of people are cured I wish I could just believe I’m going to be cured but it’s rough Now I have a restriction in my prostrate from the radiation and into weeks I get a colonoscopy will just see how much damage was done there it’s so hard for me to look on the bright side right now . Fella down the street 73 years old granted the prostrate cancer was worse than mine but he did the same procedure at the same hospital and now it has spread to his hips and he is on I guess some form of a DT but he doesn’t look into it doesn’t know anything about it just that he’s taken some bill that cost a lot of money. I see him every now and then and I try to avoid him that’s all he  wants to talk about obviously misery likes company and I know it’s awful for me to try to avoid him but it’s just so scary to me because him and quite a few other people told me why don’t you just take it out and I told him well there really isn’t a need for it they could do these other things I don’t know if I truly believed that or if I  was just too scared to do it but right now I wish to God  that I did have surgery because it’s not knowing is absolutely killing me I will admit it 

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    #37
    Steve1961 said:

    Wow

    You Guys are scientists.  And seem to know more than a lot of doctors  And you mentioned there was no sign of cribiform . They mentioned on my biopsy that it was of cribiform .  Is why I think I am so screwed .I try hard to stay off this forum I have not been on it for about 10 days every time I come on it I read something that terrifies me. After reading this whole story I’m terrified if I have to go on ADT After reading all of the above it will probably kill me I will not be able to work I will be home all alone and I  won’t be able to sleep and hopefully I’ll just have a heart attack it’ll be over . I wonder if other people read this story and don’t make comments and get absolutely terrified like me I hope not but I bet they do . After coming to this forum and reading all these sad scared stories i think to myself there’s no way I can be cured but then again a lot of people are cured I wish I could just believe I’m going to be cured but it’s rough Now I have a restriction in my prostrate from the radiation and into weeks I get a colonoscopy will just see how much damage was done there it’s so hard for me to look on the bright side right now . Fella down the street 73 years old granted the prostrate cancer was worse than mine but he did the same procedure at the same hospital and now it has spread to his hips and he is on I guess some form of a DT but he doesn’t look into it doesn’t know anything about it just that he’s taken some bill that cost a lot of money. I see him every now and then and I try to avoid him that’s all he  wants to talk about obviously misery likes company and I know it’s awful for me to try to avoid him but it’s just so scary to me because him and quite a few other people told me why don’t you just take it out and I told him well there really isn’t a need for it they could do these other things I don’t know if I truly believed that or if I  was just too scared to do it but right now I wish to God  that I did have surgery because it’s not knowing is absolutely killing me I will admit it 

    I hit the wall about

    I hit the wall about cribriform myself a year or so ago and was told on my UK forum I had it wrong.

    Cribriform is a diagnostic marker used to upgrade a 3 to a 4. I may well have been 3+3 otherwise.

    Is the local expert said on my forum it was caight at diagnosis, I had radical treatment, it is now in a bucket and my numbersa are good.

    I do not think it is worse than that.

    They generally tell you outright if you have a serious variant (e.g. small cell) and what risks that entail.

    You too had treatment with curative intent. Have faith. Relax a bit.

  • Steve1961
    Steve1961 Member Posts: 625 Member
    #38
    Cribiform

     It’s tough to have faith when you think you’re being lied to. This surgeon now is saying that I had simple cribriform. Not invasive cribriform. Everything I read just talks about cribriform and how it’s almost  certain that it always spreads. All it talks about his crib form nothing about simple or invasive this is why I think they’re just trying to pacify me because they know I have major anxiety over this 

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    edited October 2019 #39
    Prognosis

    Hi there,

    I avoid talking about my prognosis with anyone now.
    I tell them I am in remission, this is true as I have a PSA of less than the limit of detection or zero if you like and I have no symptoms.
    No details of the treatment I have undergone, the PSA results, the discussions with Tigger and Eeyore on possible outcomes.
    Most of them cannot understand what I have been through both mentally and physically or what may happen in the future.
    My focus now is on enjoying my life with my wife as far as possible and wait to see what the long term future may bring.
    We have lots to do! :-)

    Best wishes,

    Georges

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    #40
    Hard case

    Hi Steve,

    You have to bear in mind that I am a very extreme and unusual case.
    I had a massive PSA but almost all of the tumour was concentrated in the prostate gland so when that was cut out my PSA fell dramatically.
    95% of men with a PSA like mine will have a large network of metastases in place but I was negative on the Technetium bone scan, MRI and CT scan.
    The bone scan doctor told me after the scan that she expected me to light up like a Christmas tree.
    This does not mean that I do not have metastases, maybe I do but they are too small to see.
    Or maybe as Tigger thinks is possible I have a few hot spots in my pelvis, maybe in the prostate bed or close by.
    You do have to remember that this is cancer treatment.
    Some of us have had a rough journey, some may find a surprise popping out of the woodwrk years later; but unlike people who go through the worst of chemotherapy I still have all my hair, finger and toe nails, I feel pretty good most days and I hope things will get better.

    Best wishes,

    Georges

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    #41
    Steve1961 said:

    Cribiform

     It’s tough to have faith when you think you’re being lied to. This surgeon now is saying that I had simple cribriform. Not invasive cribriform. Everything I read just talks about cribriform and how it’s almost  certain that it always spreads. All it talks about his crib form nothing about simple or invasive this is why I think they’re just trying to pacify me because they know I have major anxiety over this 

    It is a diagnostic marker to

    It is a diagnostic marker to upgrade 3 elements to 4. That's the nun of most research.

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