Decision Time RP or ADT/HDR/EBRT

24

Comments

  • Georges Calvez
    Georges Calvez Member Posts: 546 Member
    edited May 2021 #22
    Gut feeling

    Hi there,

    At the end of the day you have to go with what you consider to be right, there is no guaranteed treatment with minimal side effects that will cure, nor is there a way of scientifically deciding between the various treatments.
    One of the advantages of RP/RT/ADT over HDR/RT/ADT is that if it is successful your PSA will fall to close or below the limit of detection and stay there. With HDR/RT/ADT you will have some prostate cells remaining, and they will produce some PSA. Some men find that the rate is very stable and they feel happy and confident with this, others find that it moves up and down more or less, with a consequent effect on the worry cells in some cases.
    It is made worse by the fact that PSA is not a direct indicator of possible cancer activity, so maybe nothing is happening at all, or maybe it is.
    Somewhere around the eighteen month point seems to be the sweet spot for ADT, it maximises the effect on the cancer while avoiding the worst of the side effects of ADT like irreversible castration, osteoporosis, etc.
    Most doctors seem to agree that three years, which was the norm in advanced cases, is too long, but it is hard to find a consensus on how long is long enough.
    I did nineteen months on Firmagon and on the whole it was not too bad, but I was happy to stop.

    Best wishes,

    Georges

  • CMO2021
    CMO2021 Member Posts: 53 Member
    edited May 2021 #23
    Hi Georges,

    Hi Georges,

    Thank you, for everything you have shared.  Yes  knowing that the PSA should hopefully be zero or close to it after RP is a definite plus vs dealing with the time to reach nadir with RT and the bump ups which may or may not be something. Not an easy decision but one we all have had to make with the disease.

    Thank you,

    Chris

  • CMO2021
    CMO2021 Member Posts: 53 Member
    edited May 2021 #24
    I want to thank everyone for

    I want to thank everyone for your support and insight.  After additional thought and additional consultation with the MO, RO and Surgeon I think my best course forward is ADT/HDR/IMRT I am starting with Firmagon and abiraterone (18 months)after three months of ADT I will have the  HDR Brachy followed by IMRT four weeks after the HDR Brachy.  I  will continue to  provide updates on my journey.  I am thankful for this group, and my supportive wife and family and friends.

    Chris

  • Josephg
    Josephg Member Posts: 318 Member
    Decision Made

    CMO2021, Your decision is made, and I wish you the best of outcomes on this leg of your PCa journey.

  • Old Salt
    Old Salt Member Posts: 949 Member
    edited May 2021 #26
    Good decision!

    I hope that having come to a decision will be a relief.

    Best wishes on your journey; it will take quite a while, but you willl get there.

    Just for comparison, I (with several intraprostatic Gleason 9 lesions) had three sessions of SBRT followed by 25 IMRT sessions. Also on ADT (Lupron) for 18 months. 

  • VascodaGama
    VascodaGama Member Posts: 3,523 Member
    edited May 2021 #27
    Great choice

    Great news for reaching a decision. I hope it works well and gives you peace of mind for the years to come. 18 months on ADT is just the typical in this sort of combination treatment, starting the radiation process two to three months into the hormonal. I just wonder if Abiraterone is the best to those ADT naive guys. Surely there have been more interest in the use of abiraterone since its generic become available (at 1/10th of the original price) but one shouldn't forget that this is a drug belonging to the second line ADT protocols recommended when refractory of the more common antiandrogens occur (if ever). Abiraterone requires the use of Prednisone which could interfere in the appropriate function of the immune system. It requires closer vigilance.

    I am eager to read your update along the journey.

    Best wishes for full success and luck in the spectrum of the side effects.

    VGama

  • CMO2021
    CMO2021 Member Posts: 53 Member
    edited May 2021 #28

    Great choice

    Great news for reaching a decision. I hope it works well and gives you peace of mind for the years to come. 18 months on ADT is just the typical in this sort of combination treatment, starting the radiation process two to three months into the hormonal. I just wonder if Abiraterone is the best to those ADT naive guys. Surely there have been more interest in the use of abiraterone since its generic become available (at 1/10th of the original price) but one shouldn't forget that this is a drug belonging to the second line ADT protocols recommended when refractory of the more common antiandrogens occur (if ever). Abiraterone requires the use of Prednisone which could interfere in the appropriate function of the immune system. It requires closer vigilance.

    I am eager to read your update along the journey.

    Best wishes for full success and luck in the spectrum of the side effects.

    VGama

    Hi VG,

    Hi VG,

     

    Great question as always regarding the abiraterone as I asked the same question.  My understanding is that they added it into my treatment  due to the high risk cribiform and intradcutal histology. Though their not a lot of information on its use in ICD-P.  I will keep everyone posted as I continue my journey.

     

    Best regards,

    Chris

  • lighterwood67
    lighterwood67 Member Posts: 329 Member
    edited May 2021 #29
    Great Choice

    Best of luck on your journey with the beast.

  • CMO2021
    CMO2021 Member Posts: 53 Member
     Just a quick update the plan

     Just a quick update the plan is to have my HDR Brachy on 7/26/2021.  I will update as I  move forward with ADT.

    Chris

  • MK1965
    MK1965 Member Posts: 231 Member
    CMO2021 said:

     Just a quick update the plan

     Just a quick update the plan is to have my HDR Brachy on 7/26/2021.  I will update as I  move forward with ADT.

    Chris

    Great choice to have HDR

    Great choice to have HDR brachytherapy. Two treatments in a week or so is excellent.

    Also, you are avoiding to have life changing SE that change man aAntony and functionally for ever.

    once again, congratulations on excellent choice for your treatment.

    MK

     

  • Georges Calvez
    Georges Calvez Member Posts: 546 Member
    edited May 2021 #32
    Difficult choice

    Hi there,

    You were faced with a choice between the devil and the deep blue sea.
    Whatever your choice, you were going to face side effects of more or less severity, some of which were shared and some of which were unique to one treatment.
    When do you have your first pair of Firmagon injections?
    That stuff is like falling off a cliff, one day you are walking around with a normal quota of testosterone and the next you are not.
    The injections are fairly painful in most cases, I used to take ibuprofen, other people use ice packs, etc.
    There is a definite link between the skill and experience of the person who administers the stuff and the subsequent irritation.
    Hopefully you will find it not too bad.

    Best wishes,

    Georges


  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,752 Member
    CMO2021 said:

    I want to thank everyone for

    I want to thank everyone for your support and insight.  After additional thought and additional consultation with the MO, RO and Surgeon I think my best course forward is ADT/HDR/IMRT I am starting with Firmagon and abiraterone (18 months)after three months of ADT I will have the  HDR Brachy followed by IMRT four weeks after the HDR Brachy.  I  will continue to  provide updates on my journey.  I am thankful for this group, and my supportive wife and family and friends.

    Chris

    Week late, dollar short.....

    Chris, your decision involved a rare combination of complexity, new-ish modalities, and world-class experts at SKCC advising you.   While it is a situation that is somewhat of an outlier for first-line response, all of the guys here who have successfully battled metastatic disease see it as wise, so so do I.  It was clear before you started that HT of some variety would be the heart of your recovery.  The Brach and IMRT are nice additions, and retain some hope of curative outcome.  Good luck and continue writing.  We always learn more here than we teach,

    max

  • CMO2021
    CMO2021 Member Posts: 53 Member
    Dear All,

    Dear All,

    Thank you for all of your support its hard to express how much it helps.  

    Georges,  I should have posted that I had my  Firmagon injections on May 18th.  Yes those little buggers stung and definitely  more sore for a day and then started to get better.   Now  I have these two bumps like large welts or Hives on my stomach.  Doing ok so far just started to have some hot flashes.  Bought a stationary bike and resistance bands.  Haven't quite figured the best workout for the bands but I get on the bike every morning and evening and  break a sweat.  Also get out walking with my wife and our dogs. So hoping that it will help reduce some of the potential effects of ADT if nothing else I think it helps me mentally.

    I am fortunate to have a very supportive wife who is somewhat amused (in good way) with my hot flashes its been  a bonding moment.  Additionally I am fortunate to have a friend who was diagnosed at 50 and went 13 years then recurred with mets to the bone which responded well to ADT.  Its nice to talk with someone face to face who is on this journey. So I am building my support group between, this board, my wife and my friend.  Sorry rambling a bit but so appreciative for you all.  

    Chris

  • Josephg
    Josephg Member Posts: 318 Member
    CMO2021 said:

    Dear All,

    Dear All,

    Thank you for all of your support its hard to express how much it helps.  

    Georges,  I should have posted that I had my  Firmagon injections on May 18th.  Yes those little buggers stung and definitely  more sore for a day and then started to get better.   Now  I have these two bumps like large welts or Hives on my stomach.  Doing ok so far just started to have some hot flashes.  Bought a stationary bike and resistance bands.  Haven't quite figured the best workout for the bands but I get on the bike every morning and evening and  break a sweat.  Also get out walking with my wife and our dogs. So hoping that it will help reduce some of the potential effects of ADT if nothing else I think it helps me mentally.

    I am fortunate to have a very supportive wife who is somewhat amused (in good way) with my hot flashes its been  a bonding moment.  Additionally I am fortunate to have a friend who was diagnosed at 50 and went 13 years then recurred with mets to the bone which responded well to ADT.  Its nice to talk with someone face to face who is on this journey. So I am building my support group between, this board, my wife and my friend.  Sorry rambling a bit but so appreciative for you all.  

    Chris

    Stay Active

    Great strategy, CMO.  You will find that your 'drive' to work out regularly will diminish greatly as the ADT takes affect, but 'force' yourself to remain active and consistent with your workout plan.  It really does help to minimize the effects of ADT.  I am on my second round of ADT, and I can personally verify that what you are planning is workable and will be greatly beneficial to you. For me, it is a treadmill and a set of adjustable dumbbells.

    Hopefully, your medical team recommended that you take daily doses of calcium and vitamin D, to help reduce the effects of bone loss, associated with ADT.

    And yes, your wife being supportive is huge.  Ask her to 'push' you, whenever she observes that you might not be sticking with your workout plan.  She can be your task master, as well as being your cheerleader.

    Like you, when I complained to my wife about the hot flashes, she replied (good naturedly), "All woman go through this in their lives, so man up!".

  • CMO2021
    CMO2021 Member Posts: 53 Member
    edited May 2021 #36
    Josephg,

    Josephg,

    Thank you for the support and advice.  Yes I am taking calcium with vitamin D.  I have told my wife to kick me in the butt if she sees me slacking. A quick question did you notice a big difference from the firgammon compared to when you started lupron.  I am also on abiaterone (Zytiga).  Just curious to see if I can expect an increase in symptoms when I start the Lupron.  Thank you for our insight.

     

    Chris

  • CMO2021
    CMO2021 Member Posts: 53 Member
    Thank you Josephg.  I'll let

    Thank you Josephg.  I'll let you know if I see a significnat difference in the side effects when I start the Lupron.

  • Georges Calvez
    Georges Calvez Member Posts: 546 Member
    edited May 2021 #38
    Time dependence

    Hi there,

    It is worth noting that the effects are time dependent.
    Some of them like loss of libido and hot flashes set in early and continue throughout.
    Testicular shrinkage takes a few months, but eventually they will be like peanuts.
    Loss of most of your body hair takes longer as it takes a while to fall out and not regrow.
    There are psychological effects as well, they tend to creep up on you. After a few months I would start crying for no reason at all.
    Men who do six months of testosterone deprivation generally find it easier than long termers doing eighteen months or more.
    Men with Stage 4 disease can be on ADT for life or castrated, this can be more or less hard to bear depending on the individual.

    Best wishes,

    Georges

  • Josephg
    Josephg Member Posts: 318 Member
    Symptoms

    CMO,

    I have never used Firmagon, or at least, not yet.

    My first round of ADT was a cocktail of Lupron and Casodex.  I took Casodex for a month, and then I received my first injection of Lupron.  For me, the effects of Lupron took place slowly after the first injection, and it took about 2 weeks for the typical symptoms to take full effect.

    My current round of ADT is a cocktail of Eligard, Zytiga, and Prednisone.  I took Zytiga and Prednisone for 2 weeks, and then I received my first injection of Eligard.  For me, the effects of Eligard took place slowly after the first injection, and it took about 3 weeks for the typical symptoms to take full effect.

    As you can see, the symptom occurrence trajectory is similar for both rounds of ADT, as I believe that Lupron and Eligard are essentially the same hormone, with the main difference being how they are injected into your body.  Lupron is injected into muscle tissue (rear end), and Eligard is injected into fat tissue (stomach).

    The symptoms for both rounds of ADT for me are similar, with the only significant difference is that with my current ADT cocktail, I get alternating hot flashes and deep chills.  So, I am continuously adding or throwing off clothing, depending on which part of the hot flash and deep chill cycle that I am on at the moment.  I do not recall having the deep chills, when I was on my original ADT cocktail.

  • CMO2021
    CMO2021 Member Posts: 53 Member
    edited May 2021 #40
    Thank you Georges,

    Thank you Georges,

    I am concerned about the psychological effects and hoping excercise and trying to keep a positive attitude will help.  I am on track for at least 18 months of ADT so I'll just take it one day at a time.  Thank you for sharing your experiences.

    Chris

  • CMO2021
    CMO2021 Member Posts: 53 Member
    edited June 2021 #41
    Just checking in I'm about 6

    Just checking in I'm about 6 weeks into my ADT + abiraterone.  Side Effect have been tolerable and I feel pretty good.  Labs have been stable  my first l PSA  since starting the PSA was 0.7 ng/ml down from 10.1 ng/ml.  I've been told the decline may be slower over the next couple of months, but I hope I will be close to undetectable by the time I start my HDR Brachy.