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New diagnose

Posted , 8 users are following.

FoxT
FoxT

Hi 

I,ve just got the news I,ve got prostrate cancer (9 on the Gleason scale, 20 out of 20 biopsys posative). Been told its not worth removing (?) Feel fit as a fidle, on Bicalutimide, no side effects. Its spread, slightly into pelvic lymph nodes and awaiting CT scan. Due to start Zodalex injection in 2 days. My question is: How bad are Zodalex side effects? I've read their pretty sevre. I work as a photographer with own retail shop so don't intend stopping work.

Would an increase in Bicalutimide (say from 50MG to 75) a day not be as good? Just dont fancy the sweats, fatigue, weight gain etc.

1 like, 15 replies

15 Replies

  • david41094
    david41094 FoxT

    Posted

    As the PCa has spread beyond the capsule surgery on its own would be pointless (even if they remove proximal lymph nodes) and hormone therapy is probably more appropriate.

    I'm afraid I cannot comment on the side effects of Zoladex but it would help to give an indication of your age. I know there are a number of people on this forum who have chosen hormone therapy and I am sure they can offer advice.

    All the best.

    • FoxT
      FoxT david41094

      Posted

      Thanks david, I'm 63. Just very concerned that the Hormone therapy is going to 'slow me down' & tire me. Always ran at life at 150mph! & always been very "There"
  • Kombi_Cruiser
    Kombi_Cruiser FoxT

    Posted

    G'day FoxT and sorry to hear your news... I've been on Zoladex now since the 2nd November 2014... I've experienced the hot flushes which seem to ease a little with time (I've found the worst happens in the early hours of the morning after a good nights rest)...the weigh gain came fast (within the 1st month) putting on about a stone but again that's now stopped and I'm gradually returning to where I was... I've had the most problems staying focused on work etc with the sensation of having a muddled mind at times...Often I've just simply forgotten what it was I was supposed to be doing but again that seems to have eased (or perhaps I'm just getting used to all these things)... Lastly I find that my emotions are increasingly difficult to handle with frequent mini melt downs over nothing...

    I sleep longer hours than before but broken sleep is generally the norm with many hours of being awake during the early hours of the morning (tied to the hot flushes) before falling back to sleep for another few hours... Generally I have felt much less active than I used to be but again this seems to be improving...

    If you've read my profile you'll see what I've come through to date and unfortunately I will be on Zoladex for the rest of my life...

    Here's wishing for a fantastic outcome for you...

    • FoxT
      FoxT Kombi_Cruiser

      Posted

      Hi Kombi

      Sounds like you've been through hell. So sorry to hear that. 

      Thanks for your reply, just confirms what i already suspected.

      Just feel like I'm being pushed into something I have no control over which is frustrating.(I'm a total control freak)!!

      Realy dont fancy these injections of Zodalex as right now I feel fit and well,  despite all the bad news. (supposedly I wont after tomorrow)

      Rather have a couple of years as I am now than 5-7 or whatever feeling sh*te and not being 'Me'.

      Never the less, thanks again and good luck.

    • Kombi_Cruiser
      Kombi_Cruiser FoxT

      Posted

      FoxT...I feel much the same way as you do and I still have to convince myself to go back each time for my next injection...

      The 'Time Frames' you mentioned in your reply to dudley70181 are something that No One wants to comment on or commit to as I guess that they would only be guessing also... This is the part that I find the hardest ~ the waiting and wondering what's happening inside and when will it raise it's ugly head...I find it's like having one of those sleepless nights where morning just never comes...

      Go with the Zoladex and don't look back...go and do whatever you want and enjoy yoirself as much as possible...

      Always here should you need me...take care..!!

    • FoxT
      FoxT Kombi_Cruiser

      Posted

      Hi Kombi

      Your a damn site more responsive than the so called 'caring , sharing cancer nurse'!

      Had the 1st injection today & because I have been voicing my concerns they change the scipt to 'Prodem' (3.75mg) Basically the same as Zodalex but less intrusive, eg straight injection with a small needle as opposed to the implant.

      Now its 'wait & see'

      CT scan booked for next Wednesday (already had MRI & 'nuclear' bone scan) + of coarse the biopsy.

      Private case meeting next Friday then an open meeting with me the week after. 

      Getting a dedicated case worker from 'Cancer Care' as opposed to the NHS one.

      Thanks so much for your concern and good luck to you my friend

      All the best

      Foxy

  • Dudley71081
    Dudley71081 FoxT

    Posted

    Hello Foxy,

    I am really sorry to hear of your situation,  the proverbial bolt out of the blue and doubtless a severe shock albeit that presently you sound courageously cheerful ... and long may that continue !

    As laudable as your approach is,  if you can go to your Specialist's meeting with an open and receptive mind it will help you absorb what they have to say.

    Also it is not untypical of them to exude a great deal of positivity and optimism about the benefits of treatment.  After all they are predisposed to help as much as they can.  No doubts you will see a few faces change if you turn down their assistance.

    Although you are probably strong-willed enough to not let it go in any direction you are not comfortable with,  I just thought to give you a heads up that you will most likely feel under considerable pressure to follow their recommendations.  

    Ultimately even if it all goes totally your way now you no doubts realise,   you are going to need them in the end.

    The very best of luck to you Foxy and wishing you the most optimal outcome

    Regards

    Dudley.

     

    • FoxT
      FoxT Dudley71081

      Posted

      Hi Dudley

      Thanks for the reply.

      I've recieved a few replys on here telling me of the side effects of Zodalex, none of which I'm to keen on. 

      Not had the meeting yet with specealists (waiting on a further CT scan) so feel I'm being pushed into Zodalex without being offered any alternative.

      (I'm the sort of chap who would much rather get a couple of good years-not feeling crap, than 6 or 7 with all the side effects that zodalex throw up)! Having siad that, at the moment, no-one is talking time scales-yet!

      Thanks for taking the time to reply.

      Just feeling in need of some anawers/support, and this forums a darn site quicker in responce than the 'caring/sharing' support nurse!!

      Regards Foxy

  • ken47739
    ken47739 FoxT

    Posted

    I had two years of Zoladex implants following surgery and radiotherapy.  Side effects with me were hot flushes only, no weight gain, no apparent mood changes.  Small price to pay for zero PSA results.  My first implant was for 4weeks, to see if I had any reaction, following this I had 12 weekly implants, no problems at all.

    hope this helps

    KenW

    • FoxT
      FoxT ken47739

      Posted

      Thanks Ken.

      All comments greatly appreciated. 

      Needless to say, just feeling very apprehensive as 1st injection is in under 24hrs and I only had the diagnosis 7 days ago!

  • glamour
    glamour FoxT

    Posted

    Hi FoxT

    I first had Zoladex in 2005 for 8 months. The only thing i noticed was the hot flushes usually while in bed.

    I started a new treatment March 2015 and except for very occasional mild flushes it seems okay to me.

    I still go to the Gym to keep up my muscle tone.

    regards

    • FoxT
      FoxT glamour

      Posted

      Hi Glamour (good handle-25 years ago I was a glamour photographer in mainly Spain & Portugal, calanders etc plus studio work in the UK)

      had my 1st injection almost 4 weeks ago (3.6mg Prodalemn=same as Zoladex except a little gentler so I'm told).

      Apart from sore nipples and occasional hot flushes, which so far last all of 2 minutes, all is fine.

      Got a letter from consultant which was sent to senior oncloagist (it was actualy copied to me) which I dont like the sound of. He suggests chemo via a stent and says a sigle lymph node is infected (all of 3mm)!. Dont fancy the chemo as I'm still fully active, working and apart from a cathater, feel literally fighting fit.

      Like you I'm trying to keep fit, lifting light weights etc. Cant do a great deal as in 2009 & 10 had replacement knees. One worked and one did'nt!

      Anyway, thanks again and best of luck

      'Foxy' (which comes from Fox Talbot the nineteenth century photographer)

  • bill87517
    bill87517 FoxT

    Posted

    I have advanced PC with bone mets.  Have been on Zoladex for 3 years now.  Had to have additional bicalutimide for 12 months and PSA has been a very low 0.4.  Still get the hot flushes, joint pains, tiredness, complete erectile dysfunction etc.  but still lead a full life.  I play in a band, ride my bike, go walking and do archery.  Try to stay active and don't worry about what might be.  
    • FoxT
      FoxT bill87517

      Posted

      Hi Bill

      Thanks for your posative reply. 

      Since my last post had a 2nd injection of Prostap which went completely pear shaped. (Bad reaction to injection site, acute/chronic prostate flare, which nobody seemed to bothered about)!

      The only difference between 1st & 2nd injections was I was on Bicalutimide for the 1st one but was told to stop before the 2nd one.

      I pointed this out and again-little or no responce. So my question is Bill, how did you manage to get Biclutimide for 12 months?

      It certainly seems to calm the injection side effects.

      Any way, again, thanks for the reply and keep strong.

      Oh by the way, I used to be with a band 40 years ago...

      'Moonchild'!!

    • bill87517
      bill87517 FoxT

      Posted

      They usually give you Bicalutimide for a month before giving you the hormone therapy as to give you Zoladex straight away can cause you PSA level to spike.  My PSA was starting to rise again so I was given Bicalutimide to supplement the Zoladex.

      Keep working, stay positive and DON'T take any notice of any statistics on the net.  I chose to retire because my job was too stressful and now I don't know how I found the time to go to work.  

      My band is called High Mileage because we're all old rockers.

      Stay well.

      Bill

       

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