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Decision Time RP or ADT/HDR/EBRT

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Comments

  • CMO2021
    CMO2021 Member Posts: 51
    edited August 13 #62

    Chime in

    CMO,

    I have not been in your thread for a time, but wanted to say a few things.  First, congrats that things seem to be going well and effective.  About a month ago, you mentioned high LDH.   LDH is a marker for CELL death, which is why it used to be employed as an indicator of heart attack severity.    As a lymphoma patient, I learned that it at times is more an indicator that drugs are killing off cancer cells than it is indicative of active disease.  Mine was around 500 at times, or perhaps a bit higher.  Levels this high can clog the kidneys, as they try to pass dead tissue, which is why chemo patients must drink massive amounts of water.   What I am saying is that high LDH can be interpreted as a good thing, but only your oncologist can address this.  Also, many oncology drugs skew liver enzymes and other results.   Following an accident decades ago, my Belirubin was 18.2, so I would not fret over what you reported, which I think was around 1.6.  At over 18, my sweat, when wiped off, was gold colored, and I looked like a fresh pumpkin, and my nails were bright yellow. The doctors thought I had passed into complete liver failure, but thinngs went back to normal, somehow.   On chemo my AST/ALG ran about 200% above normal, which did not concern my oncologist at all.  The state motto of S.C., from colonial times, is Whilst I breath, I hope.

    Keep fighting the good fight, and keep winning,

    Thank You Max

    Thank you Max, I appreciate your insight.  This sight  and its members help me maintain my sanity as I navigate this disease.  I really like the S.C. motto it is so appropriate for the challenges we face. 

    Every time I see your profile picture you make me think of my Grandchildren who are  4 and 2, just thinking of them brightens my day.

     

    Thank you for the words of encouragement.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,688 **
    CMO2021 said:

    Thank You Max

    Thank you Max, I appreciate your insight.  This sight  and its members help me maintain my sanity as I navigate this disease.  I really like the S.C. motto it is so appropriate for the challenges we face. 

    Every time I see your profile picture you make me think of my Grandchildren who are  4 and 2, just thinking of them brightens my day.

     

    Thank you for the words of encouragement.

    BaBa

    The baby is approaching two years of age.  He is gangbusters wide open all day, discovering new things by the hour.  Calls his adult German shepard 'Cissie,' because they tell him the dog is his sister.  They are inseperable.  It is profoundly therapeutic for me as well; leaves open the idea of hope for a better, future world.

  • VascodaGama
    VascodaGama Member Posts: 3,429 **
    BaBa

    Yes, isn't that ionic that we all speak the same language at our first steps and then divert to different dialects. BaBa is the language of all babies and it means the same to us. Max has always his particular way of interpreting occurrences. Always good posts.

    I am like your gangbuster. I love dogs and they are my friends. One is a German Sheppard and the other a Rhodesian Lion (ridgeback). Were is the picture?

    Best

    VG

     

     

  • CMO2021
    CMO2021 Member Posts: 51
    edited August 15 #65

    BaBa

    Yes, isn't that ionic that we all speak the same language at our first steps and then divert to different dialects. BaBa is the language of all babies and it means the same to us. Max has always his particular way of interpreting occurrences. Always good posts.

    I am like your gangbuster. I love dogs and they are my friends. One is a German Sheppard and the other a Rhodesian Lion (ridgeback). Were is the picture?

    Best

    VG

     

     

    Hi VG

    I have dogs as well and they also help keep my spirits up with their unconditional love and silly antics.

     

  • CMO2021
    CMO2021 Member Posts: 51
    Update on EBRT

    I am now  over half-way through my EBRT.  Due to my intraductal histology and having Gleason 9  my MO at MSK continues to have PSA drawn during my monthly labs even while receiving EBRT.  My RO acknowledged that it can be anxiety provoking due to potential bounces but they want to keep an eye on the PSA.  This months PSA was less anxiety provoking with it going down from 0.45 to 0.20. A testosterone level was also drawn and was  at 1.0.  They had to send the sample for ultrasensitive testing due to the testosterone being so low value.  So the ADT + Zytiga appears to be working regarding suppressing testosterone.  EBRT is going well relatively uneventful other then some mild diarrhea that started last week.  So all in all  I feel good with my progress so far.

  • VascodaGama
    VascodaGama Member Posts: 3,429 **
    edited September 16 #67
    Diets may play a role once inflammation subsides

    I had RT in 2006 and also had diarrhea for two to three months. At the beginning, sometimes I would see traces of blood in the stool. I also felt burning when peeing. Doctors recommend avoiding certain foods but diets are not the cause of the disorder. It will be difficult to control the situation while inflammation at  the colon exits. It seems to me that one must try to find what makes him to feel better in a "trial & error" approach. My daily breakfast of bran (100%) with plain yogurt worked well for me but some guys avoided cereals totally.

    The low T is good news. It is the purpose of the LHRH agonist. The lower PSA gives us joy but it is insignificant while inflammation is present. Your MO may be recording the results to chart it together with the results from other patients serving as reference data in future analysis and decisions. 

    I recall that I would drink lots of water before each section of RT. Are you doing anything in particular?

    Thanks for the update. 

    Best, 

    VG

  • CMO2021
    CMO2021 Member Posts: 51
    Finished with EBRT/Monthly Update

    Just my monthly update.  Finished EBRT Sep. 27th.  GI sx's have mostly resolved.   Today (13-Oct-2021),  I had my monthly lab draws.  Everything is basically within normal limits.  PSA continues to slowly edge down 0.17 ng/ml from 0.20.  Hopefully trend will continue. Overall, I am feeling pretty good.

    Best to all,

    CMO

  • bill1950
    bill1950 Member Posts: 3
    Intraductal PCa

    Hi CMO,

    Glad that you are feeling "ppretty good"...I followed all of your threads. Happy that i came across yours. My biopsy indicates also  intraductal PCa.

    I am scheduled for Salvage HD brachytherapy at MSK next month.

    Also on firmagon...second shot at end of month. 

    My concern as possibly was yours, are the side effects. I am glad to know

    that Dr. Z is tops in doing this procedure. I had EBRT in 2004-2005 and found

    only some fatigue at the 5th week. So this is my second round of "radiation". I see that Your treatment is three fold with HDT/Brachytherap/ and External beam...

    The procedure with salvage HD BT is about 3 1/2 hours. If you don't

    mind i would appreciate hearing more about your experience. Of course, i didn't like hearing about the intraductal component. My understanding is that at MSK they treat it as aggressive cancer...(I am traveling from Upstate NY).

    Thanks, Bill

  • bill1950
    bill1950 Member Posts: 3
    Intraductal

    Hi CMO,


    I left this on the website then came back and saw the "reply" button...

    I am glad that you are feeling "good"...I followed all of your threads. I was interested since i was also diagnosed with intraductal PCa.

    I am scheduled for Salvage HD brachytherapy at MSK next month.

    Also on firmagon...second shot at end of month. 

    My concern as possibly was yours, are the side effects. I am glad to know

    that Dr. Zelefsky at MSK is tops in doing this procedure. I had EBRT in 2004-2005 (age 54) and found

    only some fatigue at the 5th week. So this is my second round of "radiation". I see that Your treatment is three fold with HDT/Brachytherap/ and External beam...

    The only  procedure with salvage is with two times with HD BT which are about 3 1/2 hours. If you don't mind i would appreciate hearing more about your experience. Of course, i didn't like hearing about the intraductal component. My understanding is that at MSK they treat it as aggressive cancer...Is that your understanding? 

    Thanks

  • CMO2021
    CMO2021 Member Posts: 51
    HDR Brachytherapy

    Hi Bill,

    Glad to give you my experience with the HDR Brachytherapy.  Mine was done by Dr. Gorovets but Dr. Z is probably the most experienced Brachytherapy Doc at MSK.  My experience was pretty straightforward. Checked in at the Brachytherapy floor.  They prepped me started IV and all that good stuff.  Dr. G came in and consented be and asked if I had any questions. One of his residents subsequently wheeled me down to the Brachytherapy surgery suite. They got me on the table and before I new it I was out.  The next thing I know they are  bringing me into recovery. A very pleasant nurse kept a close eye on me brougught me graham crackers and juice.  Once I felt ready to pee sent me to the rest room with a urinal.  I had no problem urinating very slight amount of blood (trace) and then she did an ultrasound to ensure I wasn't having any urinary retention.  After that and another set of vitals and clearance by Dr. G  I was discharged  From start to finish just about 4 four hours. A little uncomfortable sitting (felt like I was sitting on a spongy ball).  I highly recomment a hemmorhoid cusion from Wallyworld.  Mine had a cutout you could remove  that helped to keep pressure of off the prostate. I took the tamulosin (flomax) and pyridium (you will pee bright orange) and really had very mild discomfort which improved over two weeks and by four weeks I felt back to normal regarding sitting and urinating.  All in all a positive experience.

    Regarding the ADT and Zytiga,  I have been very fortunate worse side effects are the hot flashes.  The firmagon injections are the most uncomfortable while Lupron is not so bad.  I have done well with Zytiga no elevated liver values, hypertension or elevated glucose.  So again I feel very lucky.

    Having intraductal and a lot of G9 is not great but nothing I can do about it but go at it hard.  MSK does consider it very aggressive High risk PCA. From all I read intraductal is very heterogenous regarding response to treatment with some doing well for having high risk disease and others not responding well at all.  With having a suspect node the plan was ADT and Zytiga for 3 months then HDR Brachy and then EBRT.  I really think Zytiga is critical in treating intraductal.  My testosterone is 1.0.  I have a long ways to go on this journey but I am confident in my choice for treatment and have been very happy at MSK.  Also ask about having genetic testing at MSK if not already done.

    Maybe more detail then you needed, but feel free to reachout with additional questions.  FYI I grew up in upstate NY just south of Utica, and make it back a couple times per year.  I wish you well with your HDR Brachy and ongoing PCA journey.

    Best regards,

     

    Chris

      

  • bill1950
    bill1950 Member Posts: 3
    edited October 16 #72
    Procedure at MSK

    Hi Chris,

       Thanks for letting me know more about your experience at MSK! It's rare to find a fellow traveler in this "elite" group in having intraductal...?

        I have found some guys on inspire.com ...however, haven't found anyone with doing salvage HD brachytherapy. At MSK they tell me they do this kind of salvage treatment but i don't know how often. according to the articles, studies which i have read it is a reasonable approach to take after having had EBRT...I had a good experience with the external radiatio...

       I must commend you for all of what you went through before going going this route. I believe that at least one guy who i have been in contact with went the same as yours!

       I had a couple of pathologists read my biopsy and they basically said the same about having the intraductal...not sure what this means in terms of a future outcome but as you say, it has to be treated "hard"...

       At 71 it is a little challenging to "know" about having a rare kind of PCa but my guess is that it is difficult to hear at any age. I am retired and my hope is that this treatment will at least eradicate the cancer to a large degree and possibly totally.
        I'll let you know what happens at MSK after my treatment in a few weeks! It will be in two "fractions" one week apart...Nov. 3 and 10...

       I'm not from this part of NY...born on Long Island and brought up in Jersey...I suppose this could be a decent time of year to be "recuperating" and "healing"...

    I can be inside looking at the snow! ?

    Take care, Bill

  • CMO2021
    CMO2021 Member Posts: 51
    edited October 17 #73
    Hi Bill,

    Hi Bill,

    I wish you well keep me posted on  how you are doing and I wll do the same.

    Take care,

    Chris

  • CMO2021
    CMO2021 Member Posts: 51
    edited November 7 #74
    Preliminary Genomic Results

    My MSK team called to let me know my genomics for my prostate biopsy.  I have an appointment with the Genetic counselor on Dec. !4th 

    MO's Office  informed me the biopsy was BRACA positive but didn't state BRACA1 or BRACA 2.  I expect most likely BRACA 2.

     

    Best regards,

     

    CMO

  • CMO2021
    CMO2021 Member Posts: 51
    edited November 11 #75
    November Update

    I had my November lab draws.  Everything is basically within normal limits except Neutrophils that have been trending upward and now are slightly over the ULN.  PSA continues to slowly edge down 0.13 ng/ml from 0.17.  Hoping we continue the slow and steady downward trend will continue. Overall, I am feeling pretty good had a couple of ADT emotional breakdowns went down a couple of rabbit wholes I try to avoid. Back on track now, but if they increase in frequency will look into a therapist and/or antidepressant.  I don't feel depressed just really emotional sometimes.

    Best to all,

    CMO

  • Josephg
    Josephg Member Posts: 309 **
    edited November 11 #76
    Emotional Lapses

    CMO, I fully understand your comments regarding emotional changes and going down rabbit holes with ADT.  I had these effects from ADT the first time that I was on them, and now that I am on ADT again, I am experiencing them again.  With the lack of testosterone while on ADT, the small amount of estrogen in our bodies becomes prominant, and it does impact how we react emotionally.  I find myself reacting before thinking, and that is something that I rarely do, when not on ADT.  Understanding why I react emotionally when on ADT helps somewhat, but it does not totally stop those occurrences.

    Hang in there.

  • CMO2021
    CMO2021 Member Posts: 51
    edited November 13 #77
    Emotional Lapse

    Thank you Josephg, sometimes is just helps to know somebody else understands.  Thank you for your note it helped me out.

     

    Best regards,

    CMO