Advanced Cancer and waiting...

bdhilton
bdhilton Member Posts: 803 Member
edited May 23 in Prostate Cancer #1

 

I've been watching my score go up this year (surgery early 2010 and salvage late 2015).  My PSA is now .310 up from a .207 in March and .210 in July...I continue with a good and mostly plant base diet, which I believe has helped me over the years (outcome could have been aggressive but it hasn’t to date).  Some days I hate it…So, I keep busy (just bought an abandon 40 acre apple orchard that needs lots of TLC)…I do have a couple of cheat days every 3 or 4 months where I’ll eat a bacon cheese burger but I’m pretty consistent with the plant base diet that I incorporate some cold-water fish into…At the end of the day, I’m blessed…Cancer affects all of us differently and those around us.  So, I’ll stay business, stick to my diet, keep a healthy weight and enjoy my time until the doctors say ADT and reevaluate.

 

The best to everyone on their journey…

 

«13

Comments

  • Georges Calvez
    Georges Calvez Member Posts: 545 Member
    Going up or maybe not?
    Hi there,
    I would not say that your score is going up; it might be, on the other hand it might not.
    Look how this guy's PSA level fluctuated over a 28 day period and you will realise that your PSA may or may not be showing anything.
    Hang on for December, you may get lucky and see it stay level or even fall.
    https://www.yananow.org/PSAexperiment.shtml

    Best wishes,

    Georges
  • VascodaGama
    VascodaGama Member Posts: 3,495 Member
    Is it systemic?

    Hilton,

    Wow … …, that is a big piece of land surely requiring loads of care. I have a fewer number of fruit trees in a 4 acre piece, and each passing year I feel lesser energy to care for it. Working the land with my MF 135 (older than me) has given me trouble too in walking due to a heel spur that it wasn’t there before buying the land. But I am enjoying the produce (fruits and vegetables) grown free of chemicals.

    You titled the thread as “advanced cancer” but I think that your case is still localized. Your history since 2010, doesn’t imply a sort of aggressive type of cells in spite of the diagnosed Gleason score 4+3 (7). You still got a chance in eliminating the bandit if you manage to identify the cancerous spots and these lie in an appropriate area to receive spot radiation. This is what I have suggested in your last thread in here;

    https://csn.cancer.org/node/319286

    The present PSAdt of over 12 months would get you into a PSA of >5.0 (your doctor’s trigger threshold for the next treatment) in almost three years from today. That gives you enough time to explore possibilities in an oligometastatic treatment. They are doing it a JH so that you may inquire them or request your doctor to do so after a PET scan done to locate the spots. ADT will be always valid at any PSA level.

    The ORIOLE study;

    https://www.medscape.com/viewarticle/918509#vp_1

    Best wishes,

    VGama

     

  • bdhilton
    bdhilton Member Posts: 803 Member

    Going up or maybe not?
    Hi there,
    I would not say that your score is going up; it might be, on the other hand it might not.
    Look how this guy's PSA level fluctuated over a 28 day period and you will realise that your PSA may or may not be showing anything.
    Hang on for December, you may get lucky and see it stay level or even fall.
    https://www.yananow.org/PSAexperiment.shtml

    Best wishes,

    Georges

    Hi George...thanks for the

    Hi George...thanks for the positive feedback...

  • bdhilton
    bdhilton Member Posts: 803 Member

    Is it systemic?

    Hilton,

    Wow … …, that is a big piece of land surely requiring loads of care. I have a fewer number of fruit trees in a 4 acre piece, and each passing year I feel lesser energy to care for it. Working the land with my MF 135 (older than me) has given me trouble too in walking due to a heel spur that it wasn’t there before buying the land. But I am enjoying the produce (fruits and vegetables) grown free of chemicals.

    You titled the thread as “advanced cancer” but I think that your case is still localized. Your history since 2010, doesn’t imply a sort of aggressive type of cells in spite of the diagnosed Gleason score 4+3 (7). You still got a chance in eliminating the bandit if you manage to identify the cancerous spots and these lie in an appropriate area to receive spot radiation. This is what I have suggested in your last thread in here;

    https://csn.cancer.org/node/319286

    The present PSAdt of over 12 months would get you into a PSA of >5.0 (your doctor’s trigger threshold for the next treatment) in almost three years from today. That gives you enough time to explore possibilities in an oligometastatic treatment. They are doing it a JH so that you may inquire them or request your doctor to do so after a PET scan done to locate the spots. ADT will be always valid at any PSA level.

    The ORIOLE study;

    https://www.medscape.com/viewarticle/918509#vp_1

    Best wishes,

    VGama

     

    Hi VGama...you always take

    Hi VGama...you always take the time to provide great and current information...my urologist in CA said it was "advanced"...I'd shop for a new urologist but University of SF works with me plus I'm on a life long study with Northwestern by Dr. Catalona's team and they at some point in time (as you have noted)...my urologist in CA will be the last  to know...I'm  blessed for sure...i will bring up JH study  to my team...

    I've taken on huge physical projects the last 7 years here in CA.  Its been good for me plus profitable too...sometimes I feel it keeps me alive...

     

    Thxs

     

  • bdhilton
    bdhilton Member Posts: 803 Member
    Test results

    My PSA test on 01/27/2010 came back as 0.301 and they tell me I'm "stable", whatever that really means but I'll take it!

  • Steve1961
    Steve1961 Member Posts: 301
    edited January 2020 #7
    Advance????

    why do you say advanced ..looks like you had 5 years before reoccurance..did you have  a high gleason score or PSA just curious ..I am seeing someone at UCSF as well.dr Carroll ..

  • VascodaGama
    VascodaGama Member Posts: 3,495 Member
    Stable

    Well, at least there were a decline of the values. This is a case for celebration.

  • bdhilton
    bdhilton Member Posts: 803 Member
    Steve1961 said:

    Advance????

    why do you say advanced ..looks like you had 5 years before reoccurance..did you have  a high gleason score or PSA just curious ..I am seeing someone at UCSF as well.dr Carroll ..

    I've had surgery, salvage

    I've had surgery, salvage radiation and when it came back my doctors are referring to it as "Advanced cancer"...my original PSA score was 2.8...I stated this journey back in 2009...

  • bdhilton
    bdhilton Member Posts: 803 Member
    edited August 2020 #10
    Well...Jan 27, 2020 was 0.301

    Well...Jan 27, 2020 was 0.301 and my July 27th test came back at 0.60...it appears I've doubled in 6 months....;-(  I am video chatting with the doctor next Monday....

  • Clevelandguy
    Clevelandguy Member Posts: 750 Member
    edited August 2020 #11
    Different treatment?

    Hi bd,

    You might want to talk to your doc the next time to see if genetic therapy might be another tool for you?

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1476102/

    Dave 3+4

  • VascodaGama
    VascodaGama Member Posts: 3,495 Member
    edited August 2020 #12
    PSAdt <8.7 months</b>
    Hilton,
    The doubling time should be calculated from the initial PSA 0.207 of March 2019. The increase to 0.60 represents a PSAdt of 8.7 months. Typically the threshold used to compare critical increases in cases like yours is a PSAdt of <9 months. You are close.
    Your doctor may be waiting for a much higher level to start the new treatment which could be ADT (hormonal). In your meeting remember to inform him that you want to do a PET scan before starting something. This image exam will show you where the malignancy is located and the test should be done without the influence of any disrupting medication.
    Let's hope for the best.
    Regards
    VG
  • bdhilton
    bdhilton Member Posts: 803 Member
    edited August 2020 #13

    Different treatment?

    Hi bd,

    You might want to talk to your doc the next time to see if genetic therapy might be another tool for you?

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1476102/

    Dave 3+4

    Hi David,  thank you for your

    Hi David,  thank you for your input and link...thxs

  • bdhilton
    bdhilton Member Posts: 803 Member
    edited August 2020 #14

    PSAdt <8.7 months</b>
    Hilton,

    The doubling time should be calculated from the initial PSA 0.207 of March 2019. The increase to 0.60 represents a PSAdt of 8.7 months. Typically the threshold used to compare critical increases in cases like yours is a PSAdt of <9 months. You are close.

    Your doctor may be waiting for a much higher level to start the new treatment which could be ADT (hormonal). In your meeting remember to inform him that you want to do a PET scan before starting something. This image exam will show you where the malignancy is located and the test should be done without the influence of any disrupting medication.

    Let's hope for the best.

    Regards

    VG

    Hi VG...yes, always hope for

    Hi VG...yes, always hope for the best and second opinions...I always appreciate  your input and observations...Iooking forward with what the Dr has to say...The journey continues!  thank you

  • bdhilton
    bdhilton Member Posts: 803 Member

    PSAdt <8.7 months</b>
    Hilton,

    The doubling time should be calculated from the initial PSA 0.207 of March 2019. The increase to 0.60 represents a PSAdt of 8.7 months. Typically the threshold used to compare critical increases in cases like yours is a PSAdt of <9 months. You are close.

    Your doctor may be waiting for a much higher level to start the new treatment which could be ADT (hormonal). In your meeting remember to inform him that you want to do a PET scan before starting something. This image exam will show you where the malignancy is located and the test should be done without the influence of any disrupting medication.

    Let's hope for the best.

    Regards

    VG

    What do you make out of this...

    Hi VG....have you read this study?  Separately, I see my doubling time as 8.9-11.9 months?

     

    Regards,

    BD

  • bdhilton
    bdhilton Member Posts: 803 Member
    edited August 2020 #16
    bdhilton said:

    What do you make out of this...

    Hi VG....have you read this study?  Separately, I see my doubling time as 8.9-11.9 months?

     

    Regards,

    BD

    https://www.ncbi.nlm.nih.gov

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3718717/

  • VascodaGama
    VascodaGama Member Posts: 3,495 Member
    PSAdt as a threshold

    Hilton,

    The study above is new to me but I have read similar studies done in the decade before 2010. I learn that a PSAdt of 9.5 months is the cutting threshold separating critical from benevolent progression.

    My story with this threshold started when I consulted in 2001 Dr Susan Slovin (medical oncologist specialist in PCa) at MSKCC. She diagnosed my case as micrometastases and that made me curious. She formulated such diagnosis from the data pre and  post surgery, together with the information collected when the recurrence status was declared in March 2001, which presented extensive probabilities for far metastasis (therefore in urgent need of an earlier SRT), but that made Slovin to recommend me a wait and see (WW) period. Micrometastases cases were and still are considered to do badly in salvage radiotherapies (combination or multimodal treatments were inexistent at the time). Slovin was involved in studies regarding the optimal timing of salvage radiotherapy for biochemical recurrence after radical prostatectomy and was a supporter for early SRT but in her opinion this fact was controversial in some patients that presented micrometastases. Chemotherapy seemed to be better.

    Mario Eisenberger from JH also had similar understanding and recommended me in 2002 to continue WW based on all previous exams and the PSAdt. I was asymptomatic and the data collected from sophisticated MRI annually put everything on hold. With no targets to aim the radiation would be like throwing arrows in the dark trying to hit the bandit. The PSAdt in the first year post RP was really short at 4.5 months. Then it flattens to a PSAdt of 11.1 months and at the end of my 6 years in WW it improved further to an envy PSAdt of 20.4 months.

    Today I think that Slovin was right. My SRT was meticulously executed (high degree of confidence on the chosen covered field of attack and isodose planning) but recurrence was again experienced 4 years post SRT. The PSAdt at the time for starting ADT was at 9.9 months. Today 7 years OFF treatment (post two years of ADT) the PSA has increased and has shown two periods in plateaus but overall the PSAdt is calculated at 24.93 months. This seems good but it has no meaning in Systemic cases if a radical is no more an option. PSAdt would be important to you if you plan to go through oligometastatic treatment.

    Thanks for the link.

    Best wishes,

    VGama

  • bdhilton
    bdhilton Member Posts: 803 Member
    edited January 2021 #18

    PSAdt as a threshold

    Hilton,

    The study above is new to me but I have read similar studies done in the decade before 2010. I learn that a PSAdt of 9.5 months is the cutting threshold separating critical from benevolent progression.

    My story with this threshold started when I consulted in 2001 Dr Susan Slovin (medical oncologist specialist in PCa) at MSKCC. She diagnosed my case as micrometastases and that made me curious. She formulated such diagnosis from the data pre and  post surgery, together with the information collected when the recurrence status was declared in March 2001, which presented extensive probabilities for far metastasis (therefore in urgent need of an earlier SRT), but that made Slovin to recommend me a wait and see (WW) period. Micrometastases cases were and still are considered to do badly in salvage radiotherapies (combination or multimodal treatments were inexistent at the time). Slovin was involved in studies regarding the optimal timing of salvage radiotherapy for biochemical recurrence after radical prostatectomy and was a supporter for early SRT but in her opinion this fact was controversial in some patients that presented micrometastases. Chemotherapy seemed to be better.

    Mario Eisenberger from JH also had similar understanding and recommended me in 2002 to continue WW based on all previous exams and the PSAdt. I was asymptomatic and the data collected from sophisticated MRI annually put everything on hold. With no targets to aim the radiation would be like throwing arrows in the dark trying to hit the bandit. The PSAdt in the first year post RP was really short at 4.5 months. Then it flattens to a PSAdt of 11.1 months and at the end of my 6 years in WW it improved further to an envy PSAdt of 20.4 months.

    Today I think that Slovin was right. My SRT was meticulously executed (high degree of confidence on the chosen covered field of attack and isodose planning) but recurrence was again experienced 4 years post SRT. The PSAdt at the time for starting ADT was at 9.9 months. Today 7 years OFF treatment (post two years of ADT) the PSA has increased and has shown two periods in plateaus but overall the PSAdt is calculated at 24.93 months. This seems good but it has no meaning in Systemic cases if a radical is no more an option. PSAdt would be important to you if you plan to go through oligometastatic treatment.

    Thanks for the link.

    Best wishes,

    VGama

    PET Injection and PSMA PET/CT

    VGama... had a 0.7 yesterday.  UCSF has generously taken me in for some research THANKS TO YOU... I reached out to them (apparently I might be a good canadate) and as I understand, they get great results at 0.6 from their PSMA PET/PT as it relates to the study you recommended to me... thank you so much for talking the time and addressing my conserns with studies and data since 2009...

  • VascodaGama
    VascodaGama Member Posts: 3,495 Member
    edited January 2021 #19
    Good news indeed

    Hilton,

    I am glad to hear about UCSF's acceptance. I hope all goes well in your favor. Let me know the details once it all starts. 

    Meanwhile your PSAdt has improved to 11.4 months. I wonder what have you been doing to contribute for these facts. 

    Congratulations 

    Best 

    VG

  • bdhilton
    bdhilton Member Posts: 803 Member

    Good news indeed

    Hilton,

    I am glad to hear about UCSF's acceptance. I hope all goes well in your favor. Let me know the details once it all starts. 

    Meanwhile your PSAdt has improved to 11.4 months. I wonder what have you been doing to contribute for these facts. 

    Congratulations 

    Best 

    VG

    VG,  the only thing I've

    VG,  the only thing I've changed, has been incorporating some meat into my diet??? I'll take the slow growth... I'll let you know...thanks again

  • Georges Calvez
    Georges Calvez Member Posts: 545 Member
    edited January 2021 #21

    Hi there,

    There is only a weak relationship between the level of PSA and what a prostate cancer is doing, but the fact that it is not rising rapidly should be a good sign.
    See how the scan goes.

    Best wishes,

    Georges