quesion about intermittent HT

vartabebo
vartabebo Member Posts: 10
Hi guys,


So here's an update on my dad along with a question that has been perplexing us:

After a 10 year remission, his PSA started going up reaching 5.89 in January. I think his Gleason score was 6, maybe 7. A possible lymph node (one node was enlarged on the CT scan) involvement was noted, but his bones were clear. He's 70.
At this point his urologist suggested HT and he had his first shot of Trelstar along with Casodex.
Three months later we got his PSA, it was down to 0.1. Then, he got his second shot of Trelstar, while continuing the Casodex.

According to both his urologist and the oncologist, if his PSA is still 0.1 or less at the six month mark (this coming August), he should stop the shots and Casodex and wait until PSA rises again. This was good news, but we wanted to ask what other people have done as far as intermittent therapy is concerned. I realize these answers vary a lot, but it would be really helpful if we could hear the common wisdom on this. The docs say: 2 consecutive PSAs of 0.1. or less is when they stop HT.

- In your experience, is stopping initial rounds of HT after 6 months too short of a period? I remember reading on these boards that 12 months was the minimum. When is a good time to stop the shots in your experience?
- During intermittent therapy, when is therapy resumed? Is it based on a subjective decision that a PSA of say, 4 is when therapy should be resumed, or are there other signals that suggest therapy be resumed?
- lastly, when we resume therapy, do we continue with the Casodex + Trelstar, or do we just do Trelstar. The urologist suggested we stop Casodex after the flare-up period from the Trelstar shot has passed. But, this seemed a bit outdated based on what we've read on the boards. The oncologist suggested we continue taking Casodex with the shots. He seems more optimistic about the next 5-10 years than the urologist.

Thanks for your collective help! After my initial post seeking help with oncologists, we were overwhelmed with the support and helpful info. My dad is now "back to normal" after his PSA drop and what we've been telling him about the cancer and how he can fight this hopefully for a while. This board is absolutely an amazing support network!

Comments

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    Norms for the number of months for each cycle is not established
    Arthur

    Welcome back to the forum. I wonder who your dad’s present doctor is. Have you found any specialist in Memorial Sloan-Kettering Cancer Center?

    I am confused with the diagnosis of your dad and cannot understand the opinion of both doctors regarding his salvage HT treatment. Both, in my layman’s opinion, are not following the principle established for the intermittent modality in HT.
    In fact, this modality does not make part of the NCCN guidelines which leads the majority of doctors (urologists as well as oncologists) to abstain from interrupting the hormonal treatment and instead, administering it continuously until the drugs lose its effectiveness (refractory prostate cancer).

    I do not want to speculate but I wonder if your dad’s chronologies of events along the ten years with PCA or any other illness are behind the reason for the doctors’ suggestion in stopping the HT at the six month mark.

    The intermittent modality was pioneered by a small group of oncologists in the 90th who decided to stop the treatment in some patients so that they could get a relief from the side effects. In doing so they found that patients would respond well again, lowering the PSA to the levels on the first cycle, once they restarted HT. Since then, many doctors have followed “suit” and have been using the methodology according to their researches on benefits and successful cases that occur in their patient community.
    I have posted about my researches on the benefits of intermittent modality vx continuous in another thread.

    Norms regulating the number of months for each cycle is not established but usually the cycles are for 12 to 18 months ON-DRUGS followed by OFF-DRUGS “vacation” period until the PSA level reaches a certain threshold mark. All this depends on the patient’s response to hormonal treatment, health conditions, age, etc.

    Dr. Myers is one of those pioneers and he usually opts for cycles (on/off) dependent on the PSA level reached by each particular patient. He maintains a patient ON drugs until that patient gets to PSA<0.01 (his own view of “remission”) and maintains that level for one year.
    Other oncologists prefer to extend a fixed term of 18 month or longer ON drugs depending on the PSA level that such patient can reach, but never higher than PSA=0 .05.
    To achieve these levels these doctors add a third drug called 5-alfa reductace inhibitor (5-ARI) which is known as the total blockade (ADT3).
    Your dad’s urologist is suggesting mono blockade (only one drug) with Trelstar. And the oncologist is suggesting double (ADT2) with Trelstar+Casodex.
    The blockade protocol is also controversial but recently there have been statistical data forwarded indicating beneficial results in terms of time to refractory (or mortality) for cases on triple blockade (ADT3).

    The “Vacation” period ends when the PSA reaches levels of 2.5 for ADT3 cases or 5.0 for ADT2 cases. Some doctors still use other threshold levels depending on each case they confront.

    You can read about details in these books;
    (1)“A Primer on Prostate Cancer: The Empowered Patient's Guide” by Stephen B. Strum and Donna Pogliano
    (2)“Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers.


    Hope this helps in your quest.
    Wishing the best to your father.

    VGama
  • vartabebo
    vartabebo Member Posts: 10

    Norms for the number of months for each cycle is not established
    Arthur

    Welcome back to the forum. I wonder who your dad’s present doctor is. Have you found any specialist in Memorial Sloan-Kettering Cancer Center?

    I am confused with the diagnosis of your dad and cannot understand the opinion of both doctors regarding his salvage HT treatment. Both, in my layman’s opinion, are not following the principle established for the intermittent modality in HT.
    In fact, this modality does not make part of the NCCN guidelines which leads the majority of doctors (urologists as well as oncologists) to abstain from interrupting the hormonal treatment and instead, administering it continuously until the drugs lose its effectiveness (refractory prostate cancer).

    I do not want to speculate but I wonder if your dad’s chronologies of events along the ten years with PCA or any other illness are behind the reason for the doctors’ suggestion in stopping the HT at the six month mark.

    The intermittent modality was pioneered by a small group of oncologists in the 90th who decided to stop the treatment in some patients so that they could get a relief from the side effects. In doing so they found that patients would respond well again, lowering the PSA to the levels on the first cycle, once they restarted HT. Since then, many doctors have followed “suit” and have been using the methodology according to their researches on benefits and successful cases that occur in their patient community.
    I have posted about my researches on the benefits of intermittent modality vx continuous in another thread.

    Norms regulating the number of months for each cycle is not established but usually the cycles are for 12 to 18 months ON-DRUGS followed by OFF-DRUGS “vacation” period until the PSA level reaches a certain threshold mark. All this depends on the patient’s response to hormonal treatment, health conditions, age, etc.

    Dr. Myers is one of those pioneers and he usually opts for cycles (on/off) dependent on the PSA level reached by each particular patient. He maintains a patient ON drugs until that patient gets to PSA<0.01 (his own view of “remission”) and maintains that level for one year.
    Other oncologists prefer to extend a fixed term of 18 month or longer ON drugs depending on the PSA level that such patient can reach, but never higher than PSA=0 .05.
    To achieve these levels these doctors add a third drug called 5-alfa reductace inhibitor (5-ARI) which is known as the total blockade (ADT3).
    Your dad’s urologist is suggesting mono blockade (only one drug) with Trelstar. And the oncologist is suggesting double (ADT2) with Trelstar+Casodex.
    The blockade protocol is also controversial but recently there have been statistical data forwarded indicating beneficial results in terms of time to refractory (or mortality) for cases on triple blockade (ADT3).

    The “Vacation” period ends when the PSA reaches levels of 2.5 for ADT3 cases or 5.0 for ADT2 cases. Some doctors still use other threshold levels depending on each case they confront.

    You can read about details in these books;
    (1)“A Primer on Prostate Cancer: The Empowered Patient's Guide” by Stephen B. Strum and Donna Pogliano
    (2)“Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers.


    Hope this helps in your quest.
    Wishing the best to your father.

    VGama</p>

    Norms for the number of months for each cycle is not established
    Many thanks VGama for your help!

    The urologist said that he recommends going to intermittent therapy after two consecutive three-month periods where PSA is <0.1. He motivated his answer by saying that this is done to minimize side effects resulting from the HT in patients.

    The oncologist motivated his suggestion for stopping after 9 months, given a PSA of <.1, by saying that intermittent therapy would delay the progression of the PCa towards refractory prostate cancer. He also thinks that based on the Gleason score and the ten years it took for the cancer to come back (prior to staring HT, a biopsy of the prostate showed no presence of PCa following his RT in 2000), we're dealing with a relatively non-aggressive PCa (I hope he's right, but we don't want to assume he is).

    One last question: is intermittent HT therapy still a relatively obscure practice, or is it considered the "standard of care"?

    We're thinking of getting a second opinion at Sloan, probably with Dr. Schor. This is so confusing, in terms of what is the best coarse of action, but that is the nature of the beast it seems..

    Thanks again and all the best.
  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    vartabebo said:

    Norms for the number of months for each cycle is not established
    Many thanks VGama for your help!

    The urologist said that he recommends going to intermittent therapy after two consecutive three-month periods where PSA is <0.1. He motivated his answer by saying that this is done to minimize side effects resulting from the HT in patients.

    The oncologist motivated his suggestion for stopping after 9 months, given a PSA of <.1, by saying that intermittent therapy would delay the progression of the PCa towards refractory prostate cancer. He also thinks that based on the Gleason score and the ten years it took for the cancer to come back (prior to staring HT, a biopsy of the prostate showed no presence of PCa following his RT in 2000), we're dealing with a relatively non-aggressive PCa (I hope he's right, but we don't want to assume he is).

    One last question: is intermittent HT therapy still a relatively obscure practice, or is it considered the "standard of care"?

    We're thinking of getting a second opinion at Sloan, probably with Dr. Schor. This is so confusing, in terms of what is the best coarse of action, but that is the nature of the beast it seems..

    Thanks again and all the best.</p>

    Doctors have no time to update constantly their knowledge
    Arthur

    I understand from your comment of; “…I hope he's right, but we don't want to assume he is…”, that you want to be on the “ALERT” and prefer to consider a “baddy” diagnosis, but the “beast” is bad in both; non-aggressive and aggressive forms. The important will be to know concretely in which type it falls. That will influence the treatment.

    Adenocarcinoma aggressivity is classified under the Gleason cells pattern/grade of 1 to 5. Your father got a Gleason score referenced by the pathologist who did the analysis on his biopsy in 2000. I was diagnosed with PCa also in 2000 and the Gleason attributed to my case was 5 (2+3). This is considered a low aggressive type of cancer because the majority of cancerous cells in the specimen fall in the “grade 2”.
    You could dig back into those results (contact his radiologist of 2000) and check for the attributed Gleason. Your father could have been of the group “4” (2+2) which are cases indicative of micro-metastasis. That info will be considered by the oncologist in the intermittent approach.

    As you posted in another thread, the intermittent is on trials and not considered yet as the “standard of care”. The NCCN group is the “authority” that set standards for the care of cancer patients.
    National Comprehensive Cancer Network is composed by 21 world’s leading cancer centers, including the MSKCC, which provide the guidelines for Clinical Practice in Oncology. The member list include “big” names, respected worldwide and their norms are considered in the protocols established by the majority of doctors associations (uro, onco, geny, etc), institutions and individual professionals around the world.

    You can read about their “standards” in this site but you need to sign-in;
    http://www.nccn.org/professionals/physician_gls/f_guidelines.asp

    The practice of the intermittent modality is not obscure at all. In European oncology and in Japan, HT is regarded differently than in the USA which makes its application more comparable to prime treatments (RP and RT). There are many referenced data of twenty years but the “big-ones” (NCCN) do not accept the principles set by the pioneers of the modality because HT lacks evidence as an important way to care for PCa. This has been a main stumbling block in regulated practice.

    Doctors have no time for reading abstracts from trials, etc, to update constantly their knowledge in the advanced methodologies, and that makes them to follow “Practice Guidelines” from associations of their affiliation or the protocols of the institution where they work.
    Some patients well educated in the matter do researches on their own and provide the details to their “supervisors”, usually medical oncologists.

    In my case, I am been followed by an uro-oncologist that likes to discuss the details of his protocol. He does not accept my views totally but he does not disregard my opinions too. He has set me for an initial period of 18 months ON-Drugs using the PSA as the marker to regulate the need of drugs dosage (agonists alone or with added anti-agonists or still a third 5-ARI drug). My present PSA is 0.05 (similar to your daddy <0.1) on mono blockade. The Testosterone level makes part of the control and I am testing every three months for T and PSA.
    At the start of HT, I had all lipids checked, bone density done, heart health verified and a MRI and Bone scan to serve as reference.
    Lipids test will be done annually and bone densitometry every two years. The intermittent modality is set to start at the end of this initial period.

    I would suggest you to do your own researches particularly in regards to the side effects (bone loss, etc) that will need additional care such as change in habits, diet and fitness program. Bisphosphonates are important complements in hormonal treatments.

    The doctor I consulted in 2001 in MSKCC was Dr. Susan F. Slovin, an “expensive” oncologist at their NY facilities. She has written several papers and abstracts on Prostate Cancer studies. She is a good oncologist for PCa cases.
    Here is her CV; http://www.mskcc.org/prg/prg/bios/330.cfm

    Best wishes.
    VGama
  • vartabebo
    vartabebo Member Posts: 10

    Doctors have no time to update constantly their knowledge
    Arthur

    I understand from your comment of; “…I hope he's right, but we don't want to assume he is…”, that you want to be on the “ALERT” and prefer to consider a “baddy” diagnosis, but the “beast” is bad in both; non-aggressive and aggressive forms. The important will be to know concretely in which type it falls. That will influence the treatment.

    Adenocarcinoma aggressivity is classified under the Gleason cells pattern/grade of 1 to 5. Your father got a Gleason score referenced by the pathologist who did the analysis on his biopsy in 2000. I was diagnosed with PCa also in 2000 and the Gleason attributed to my case was 5 (2+3). This is considered a low aggressive type of cancer because the majority of cancerous cells in the specimen fall in the “grade 2”.
    You could dig back into those results (contact his radiologist of 2000) and check for the attributed Gleason. Your father could have been of the group “4” (2+2) which are cases indicative of micro-metastasis. That info will be considered by the oncologist in the intermittent approach.

    As you posted in another thread, the intermittent is on trials and not considered yet as the “standard of care”. The NCCN group is the “authority” that set standards for the care of cancer patients.
    National Comprehensive Cancer Network is composed by 21 world’s leading cancer centers, including the MSKCC, which provide the guidelines for Clinical Practice in Oncology. The member list include “big” names, respected worldwide and their norms are considered in the protocols established by the majority of doctors associations (uro, onco, geny, etc), institutions and individual professionals around the world.

    You can read about their “standards” in this site but you need to sign-in;
    http://www.nccn.org/professionals/physician_gls/f_guidelines.asp

    The practice of the intermittent modality is not obscure at all. In European oncology and in Japan, HT is regarded differently than in the USA which makes its application more comparable to prime treatments (RP and RT). There are many referenced data of twenty years but the “big-ones” (NCCN) do not accept the principles set by the pioneers of the modality because HT lacks evidence as an important way to care for PCa. This has been a main stumbling block in regulated practice.

    Doctors have no time for reading abstracts from trials, etc, to update constantly their knowledge in the advanced methodologies, and that makes them to follow “Practice Guidelines” from associations of their affiliation or the protocols of the institution where they work.
    Some patients well educated in the matter do researches on their own and provide the details to their “supervisors”, usually medical oncologists.

    In my case, I am been followed by an uro-oncologist that likes to discuss the details of his protocol. He does not accept my views totally but he does not disregard my opinions too. He has set me for an initial period of 18 months ON-Drugs using the PSA as the marker to regulate the need of drugs dosage (agonists alone or with added anti-agonists or still a third 5-ARI drug). My present PSA is 0.05 (similar to your daddy <0.1) on mono blockade. The Testosterone level makes part of the control and I am testing every three months for T and PSA.
    At the start of HT, I had all lipids checked, bone density done, heart health verified and a MRI and Bone scan to serve as reference.
    Lipids test will be done annually and bone densitometry every two years. The intermittent modality is set to start at the end of this initial period.

    I would suggest you to do your own researches particularly in regards to the side effects (bone loss, etc) that will need additional care such as change in habits, diet and fitness program. Bisphosphonates are important complements in hormonal treatments.

    The doctor I consulted in 2001 in MSKCC was Dr. Susan F. Slovin, an “expensive” oncologist at their NY facilities. She has written several papers and abstracts on Prostate Cancer studies. She is a good oncologist for PCa cases.
    Here is her CV; http://www.mskcc.org/prg/prg/bios/330.cfm

    Best wishes.
    VGama</p>

    will ask doctors...
    Thanks again VGama,

    Next time we'll ask the oncologist about mono, vs. combination and ADT3 to hear his thinking. All in all we feel much calmer about his HT now: In any case, it seems that his initial HT round should be 12 months at least, not the 6 that the urologist has suggested. Incidentally, the oncologist is one of the participating doctors in NYC of the abiraterone trials - he had access to it before it was approved by the FDA, so he must be up on the latest research.

    We'll report on what happens next in a few months!
  • mrspjd
    mrspjd Member Posts: 694 Member
    vartabebo said:

    will ask doctors...
    Thanks again VGama,

    Next time we'll ask the oncologist about mono, vs. combination and ADT3 to hear his thinking. All in all we feel much calmer about his HT now: In any case, it seems that his initial HT round should be 12 months at least, not the 6 that the urologist has suggested. Incidentally, the oncologist is one of the participating doctors in NYC of the abiraterone trials - he had access to it before it was approved by the FDA, so he must be up on the latest research.

    We'll report on what happens next in a few months!

    Excellent questions
    vartabebo,

    You have posed some very thoughtful questions re intermittent ADT protocols. As you have discovered, depending on who you consult with and what you research/read on the subject, the “answers,” with regard to intermittent ADT protocols, may vary (as is the case with many issues/txs related to PCa). Much of the intermittent ADT info & research (as you recently posted in another thread) is emerging, although the approach is not new. Another question to keep in mind, and which is open to interpretation, is this: Do threshold criteria for start/stop (intermittent) differ for men with prostate vs men w/o prostate, i.e., if primary tx was RT vs RP?

    Although the following add’l resources/discussions may not provide concrete “answers” with regard to your excellent questions, some of the info may be helpful:
    http://csn.cancer.org/node/208317 - see tarhoosier’s “intermit” post dated Dec 23

    Dr. Charles “Snuffy” Myers, a nationally known oncologist (who has PCa) has an excellent and well-regarded website. Here’s a link to his presentation on intermittent ADT:
    http://askdrmyers.wordpress.com/2010/07/27/intermittent-hormonal-therapy/

    I hope you decide to post updates as your dad, along with you and his medical team, makes the appropriate ADT tx decisions that are right for him.

    Good Luck.