Hope??

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  • Sadie marie
    Sadie marie Member Posts: 63
    edited November 2016 #62
    I am very confused trying to

    I am very confused trying to study all the info out there. I've read the SWOG 9346 report on continuous hormone therapy in people with low volume metastatic median survival was 7 years. But other info says hormone therapy only lasts 18-24 months. Am I missing something or misreading report.

  • Old Salt
    Old Salt Member Posts: 984 Member

    I am very confused trying to

    I am very confused trying to study all the info out there. I've read the SWOG 9346 report on continuous hormone therapy in people with low volume metastatic median survival was 7 years. But other info says hormone therapy only lasts 18-24 months. Am I missing something or misreading report.

    Apples and Oranges

    Sadie Marie,

    You are comparing apples (when does hormone therapy fail?) to oranges (how long until death?). As we tried to explain earlier, once the first kind of hormone therapy (like Lupron) fails, there are other therapies that should be tried (like Xtandi etc). Hence, life can be prolonged by many years after failure of the first hormone therapy drug.

    Keep the faith!

    PS: did your husband enroll in the clinical trial that you wrote about?
     It's almost a month since the first Lupron shot. When will he get his PSA measured?

  • Sadie marie
    Sadie marie Member Posts: 63
    So you are saying lurpron

    So you are saying lurpron only last 18-24 months. The study said continuous hormone therapy was advantageous to those with low volume metastatic hormone sensitive cancer than intermittent. Intermittent was better for those with high volume. Didn't say anything about refractory. Median survival for low was 7.1 years. Just trying to grasp the effectiveness of lurpron as we go forward. We are still looking at trial with xtandi while we wait to get appointment at Washington University in St. Louis for second opinion.

  • VascodaGama
    VascodaGama Member Posts: 3,557 Member
    SOWG controversial HT trials

    From your posts I believe that you want to know for how long your man is going to live if he takes Lupron. However, as you may understand nobody can provide you with such answer. It could be 7 years (SOWG) as 15 years or more. The end of the treatment is when your man becomes refractory to all drugs.
    The above discussion refers to the drugs' efficacy in the overall treatment. To understand the matter you need to investigate more regarding the "mechanics" behind HT administration and what has been in discussion by the fellas at SOWG.

    I have posted in this forum extensively several references regarding the SWOG trials on HT. Unfortunately CSN administrators never tried to improve its search engine so that I cannot provide you the links.  In any case my opinion is that the effectiveness of Lupron in the treatment is not endless. It can continuously avoid the manufacture of testosterone by the testis, depriving cancerous cells from its "food", the androgens, but the bandit manage to mutate its androgen receptors (its mouth) to live of tiny portions of the substance or even start producing testosterone by itself (as a means of survival understood via Darwin principles).
    When the above occurs, the patient experiences a period of refractory to the treatment, meaning that the drug is not effective in the treatment (but it can still be working properly in maintaining our body at castration levels). Accordingly, your comment of:  lupron only last 18-24 months means efficacy in the treatment before cancer mutates and looks for means of survival (refractory). Long periods in castration may accelerate this process, so that one should exchange drugs the soonest before it occurs.

    The SOWG trial's 7.1 year, refers to the length of life of a patient in continuous HT treatment. You may find this comments confusing but the trial was never clear enough and it has been controversial since its beginnings. The fact is that HT has distinct applications dependent on the patient status and type of cancerous cells.

    The trial 9346 were done to compare intermittent against continuous modality involving a cohort of patients with metastatic cancer, not discriminating its extent. Where these mets located in bone alone, or in bone and tissues, or tissues alone, or........
    The results were presented indicating that the modality intermittent was "inferior", however, another previous trial prove the contrary (intermittent "superior") but it was designed to patients of failed radical therapies (which is considered by these oncologists as "localized metastases", wherever they exist).

    Regarding the effectiveness of Lupron in maintaining castrate levels of testosterone, the length of its period depends on the type of shot. Lupron injection/shot is available for 1 month, 3 months, 4 months and 6 months. To the above length one should add the drugs' half-life plus approximately 2 month which is the period our body (the pituitary) takes to recover and starts producing testosterone.

    The SOWG Trials;

    http://www.cancernetwork.com/review-article/prostate-cancer-clinical-trials-southwest-oncology-group-0

    http://www.ascopost.com/issues/july-1-2012/swog-9346-conclusions-debated-in-special-post-plenary-discussion/

     

    Best wishes,

    VG

  • VascodaGama
    VascodaGama Member Posts: 3,557 Member
    Intermittent against continuous HT administration

    SWOG was a trial to compare hormonal therapy effectiveness in two modalities. Administered continuously against  intermittent. They say that continuous treatment (meaning continuous chemical castration) is not inferior to intermittent in regards to biochemical survival period length. However, the effects of the treatment were not compared. The 7 years you comment may refer to the period in treatment before the patient experienced refractory. However, there is a higher percentage of refractory cases when patients go over the two years in continuous treatment.

    In my opinion the period for hormonal therapies should consider efficacy with the lesser side effects and the longest survival before refractory. Intermittent protocols allow periods away from the side effects and permit recovery from hypogonadism which will benefit other body systems dependent on androgens. It is thought that it also extends survival delaying refractory. Intermittent modalities are regulated by PSA thresholds and castration levels. The typical is one year in remission levels of PSA>0.05 ng/ml with testosterone at castrate levels of lower than T=30 ng/dL; and off drugs till the PSA increases to a threshold defined by the oncologist to such particular patient. In my case this threshold is PSA =2.5 ng/ml. Some guys are higher at 5 or 10 ng/ml.
    In such regard, the patient restarts the hormonal treatment with one months of antiandrogens followed by a shot of Lupron or similar (LHRH agonist).

    Typically, the one year on remission can be achieved with 18 to 24 months in castration levels. Periods above such length are not recommendable because the problem with the faster refractory possibility.

    Hope the above answers your question.

    Best,

    VG

    when we

  • Sadie marie
    Sadie marie Member Posts: 63
    edited November 2016 #67
    Actually I have no idea how

    Actually I have no idea how long he will live on Lupron that's why I ask questions. I have read it can last months to years. The urologist said we would be lucky with 2 years till death. So I am hoping Lupron last a long time and the urologist is wrong.

  • shipjim
    shipjim Member Posts: 137
    edited November 2016 #68

    Xtandi clinical trial

    Xtandi has been approved for administration in CRPC patients (Castration Resistant prostate cancer). This is not your husband's status but he can benefit from a protocol using this drug together with radiation. Clinical trials are safe and free of charge. However, you should check if the trial his doctor is proposing doesn't interfere/prohibit other treatment (such as chemo, brachytherapy, proton radiation, etc) that could turn to be the best option for his case. Another aspect you have to consider is that these trials usually are done for comparing two cohorts of participants (with and without the drug) so that one should certify that one doesn't falls into the placebo group.

    You can find details in this link;

    https://www.cancer.gov/about-cancer/treatment/drugs/enzalutamide 

    One trial involving radiation with Xtandi is here;
    https://www.cancer.gov/about-cancer/treatment/clinical-trials/search/view?cdrid=772357&version=HealthProfessional&protocolsearchid=6645739

    Xtandi (enzalutamide) is an antiandrogen of the class of the traditional Casodex. It is more refined and acts at intratumoral level (within the tumor). Typically it is administered in combination with a LHRH agonist like Lupron. These are drugs of the hormonal arsenal. They are paliative and manage to control cancer's advancement, but do not lead to cure. Your husband should investigate on radical treatments that may eliminate the cancer. Probably a protocol of HT plus RT. You should discuss about this with the doctor.

    Best,

    VG

    Diagnosis

    I'm concerned that you don't seem to have a very communicative MD.  Mine was very careful to address any concerns we had and threw some we didn't.

    I also consulted several MDs at the time.  The robot was still fairly new and expensive in South Central TX there was one in Houston and one in Austin.

    Based on research, I went to Austin and was very pleased.  The clinic held seminars both pre and post op, invited patients to attend any and all sessions to Q&A the MDs and other patients and specialists.  It was a great program and was very helpful.

    If you've already started on lupron, I don't know that getting another opinion is of value now, other on the site will have better ideas on that topic.

    I don't know how they can give you a 5 hr timeline.  6 Mos. to a year maybe but after that I thinks its crap shoot for time.  Mine wasn't spread and we treated it early on discovery.  It's been over 10 years, I'm 70 and have had to deal with other problems like recognizing I'm not 30 any more!

    Take heart and rely on the site.  Good luck,jj

  • shipjim
    shipjim Member Posts: 137
    Time

    Sadie,

    I think we understand your fear and confusion.  You're driving  by wanting a schedule so you know what to look forward to and what each stage means and when it will occur.

    Unfortunately, cancer doesn't stick to time lines.  You seek hope and you're getting the best advice from many people who have lived this life.  Maybe try the AA slogan of one day at a time.  I don't mean litteraly one day as much as getting yourself settled to accept there are no firm answers.

    There are lots of potential  out there, I'm glad you're looking around.  You don't have to be in a giant rush.  It took years to get into him, a few days more probably won't matter while you search.  You also have mentioned several types of MDs ordering different test and offering different ideas.  Do you have one person MD or experienced RN who, once you assemble the diagnosis, readings and prognosis gathered, you can sit and create some sort of chart or study guide so you can look at all options side by side and then compare, kind of like you can do when online buying things.

    You've got to find  way to slow down your mind full of worries as it can't help to go from post to post with no sense of direction.

    I don't know if this makes any sense to you but it's the best I can seem to come up with.  You have a lot of info, you need to sift it.

    Good luck, keep us posted.jj

  • Sadie marie
    Sadie marie Member Posts: 63
    shipjim said:

    Time

    Sadie,

    I think we understand your fear and confusion.  You're driving  by wanting a schedule so you know what to look forward to and what each stage means and when it will occur.

    Unfortunately, cancer doesn't stick to time lines.  You seek hope and you're getting the best advice from many people who have lived this life.  Maybe try the AA slogan of one day at a time.  I don't mean litteraly one day as much as getting yourself settled to accept there are no firm answers.

    There are lots of potential  out there, I'm glad you're looking around.  You don't have to be in a giant rush.  It took years to get into him, a few days more probably won't matter while you search.  You also have mentioned several types of MDs ordering different test and offering different ideas.  Do you have one person MD or experienced RN who, once you assemble the diagnosis, readings and prognosis gathered, you can sit and create some sort of chart or study guide so you can look at all options side by side and then compare, kind of like you can do when online buying things.

    You've got to find  way to slow down your mind full of worries as it can't help to go from post to post with no sense of direction.

    I don't know if this makes any sense to you but it's the best I can seem to come up with.  You have a lot of info, you need to sift it.

    Good luck, keep us posted.jj

    As far as I know our only

    As far as I know our only option is hormone therapy unless we get into clinical trial with xtand. I know no one can tell exact time line I was wondering about average and if there was survival with low volume metastatic prostate cancer. We are going for second opinion at Washington university in st Louis November 30. Not sure if it will help but I don't think it will hurt. He is in good health and positive. The hormone shot seems to have helped with urine flow so that's a good sign I believe.

  • Gleason Score 9 and 10
    Gleason Score 9 and 10 Member Posts: 65 Member

    So you are saying lurpron

    So you are saying lurpron only last 18-24 months. The study said continuous hormone therapy was advantageous to those with low volume metastatic hormone sensitive cancer than intermittent. Intermittent was better for those with high volume. Didn't say anything about refractory. Median survival for low was 7.1 years. Just trying to grasp the effectiveness of lurpron as we go forward. We are still looking at trial with xtandi while we wait to get appointment at Washington University in St. Louis for second opinion.

    Another Illinoisian

    Hi Sadie,

    I have been reading your posts and the comments. We also live in Illinois and my husband was just diagnosed yesterday and I am really, really scared. We have Gleason scores of 9 & 10 and a bone scan and CT scan scheduled two weeks from today. His pathology report also shows perineural invasion as identified.  

    I am curious what part of the state you live in? We are in east central area and are also considering a second opinion after we get all the results. In reading other posts, I have come across John Hopkins University (JHU) remote second opinion program. JHU seeminly has the number one urology program in the nation. Wash U is certainly wonderful and we may head there as well, or Chicago. One interesting thing about the JHU second opinion is they give you an opinion on the pathology, course of treatment, and suggestions for physicians/surgeons in your area to help. Please see below for the link if you want to review.

    http://www.hopkinsmedicine.org/second_opinion/

    My thoughts and prayers are with you!

  • Rakendra
    Rakendra Member Posts: 197 Member
    hope

       Basically, when one is diagnosed with stage four cancer, there are two choices – faith and fear.  Faith to me means that everything that happens to me is for my benefit, even those things that I do not “like”.  In other words, I totally trust that I am taken care of on a moment to moment basis, and I will always be taken care of REGARDLESS of the outcome.  The proof is that you have always been taken care of in the past, and are being taken care of in the present moment, if you are willing to see that.  The future does not exist, it is only a thought.  No one has ever been to the future.  No one has a future.  There is only this moment and then the next and the next……

    You have made the choice of fear, and that choice is causing you suffering and causing you to not be in the moment, and so you miss the blessings that are available to you.  You are always concerned about the future, and you lose the here and now of the present moment.  You are trying to take control to make things happen the way you want.  You are not in charge.  Surrender to,”Thy will be done” and abandon, “My will be done.” The alternative is to simply accept the present moment and celebrate that, even if it is stage four cancer. 

    Worrying about life extension is a fool’s game with Pca.  I have had massive and extended matasteses over seventy five per cent of my body with a Psa of 300 and was given six months.  That was four years ago.  Now my Psa is under 1.5 and I am body building again at 85.  I mention this to show that positive thought and acceptance and celebration and trust will add a very healing vibration.  Fear and worry will most certainly feed the negativity of the cancer.  I suggest you read Eckhart Tolle – The Power of Now and A New World.

       I am sorry that you and your husband have to go through this.  You are only seeing the medical problems and ignoring the spiritual.  There is nothing wrong with that, but the consequences are going to be unnecessary suffering.  Love, Swami Rakendra

     

     

     

  • Will Doran
    Will Doran Member Posts: 207
    Amen

    Sadie,

    Amen & Amen to what Swami Rakendra said above. Especially "Thy will be done".  It's one day at a time in this deal.  On Dec 10, I'll be a three years survivor since my surgery. I started with a PSA of 69, and the PSA has remained at undetectable levels (<0.010 --0.035) since my Surgery, Lupron and Radiation treatments.   I see every new day as a gift, and Thank the Good Lord every day for the new day, and for all the doctors, medical and therapy people who have helped and are helping me.

    Love, Peace and God Bless

    Will

  • Sadie marie
    Sadie marie Member Posts: 63
    Rakendra said:

    hope

       Basically, when one is diagnosed with stage four cancer, there are two choices – faith and fear.  Faith to me means that everything that happens to me is for my benefit, even those things that I do not “like”.  In other words, I totally trust that I am taken care of on a moment to moment basis, and I will always be taken care of REGARDLESS of the outcome.  The proof is that you have always been taken care of in the past, and are being taken care of in the present moment, if you are willing to see that.  The future does not exist, it is only a thought.  No one has ever been to the future.  No one has a future.  There is only this moment and then the next and the next……

    You have made the choice of fear, and that choice is causing you suffering and causing you to not be in the moment, and so you miss the blessings that are available to you.  You are always concerned about the future, and you lose the here and now of the present moment.  You are trying to take control to make things happen the way you want.  You are not in charge.  Surrender to,”Thy will be done” and abandon, “My will be done.” The alternative is to simply accept the present moment and celebrate that, even if it is stage four cancer. 

    Worrying about life extension is a fool’s game with Pca.  I have had massive and extended matasteses over seventy five per cent of my body with a Psa of 300 and was given six months.  That was four years ago.  Now my Psa is under 1.5 and I am body building again at 85.  I mention this to show that positive thought and acceptance and celebration and trust will add a very healing vibration.  Fear and worry will most certainly feed the negativity of the cancer.  I suggest you read Eckhart Tolle – The Power of Now and A New World.

       I am sorry that you and your husband have to go through this.  You are only seeing the medical problems and ignoring the spiritual.  There is nothing wrong with that, but the consequences are going to be unnecessary suffering.  Love, Swami Rakendra

     

     

     

    You are absolutely correst

    You are absolutely correst time to quit moping and enjoy life. He has enrolled in the trial study of xtandi with Lupron. He is joining the YMCA and is very positive. A little down about the loss of libido but we will get through that. Thank you for the wake up.

  • Old Salt
    Old Salt Member Posts: 984 Member

    You are absolutely correst

    You are absolutely correst time to quit moping and enjoy life. He has enrolled in the trial study of xtandi with Lupron. He is joining the YMCA and is very positive. A little down about the loss of libido but we will get through that. Thank you for the wake up.

    Progress!

    Glad to read your update and the fact that your husband was accepted into the trial. I am pretty sure that his health will be closely watched.

  • Sadie marie
    Sadie marie Member Posts: 63
    Ok question? My husband is

    Ok question? My husband is starting trial and had to to blood test bone and ct scans. PSA went from 87 in August to 2.19 but bone scan showed 4 spots instead of 3. So is this good kinda good or not good?

  • Sadie marie
    Sadie marie Member Posts: 63
    edited December 2016 #77

    Ok question? My husband is

    Ok question? My husband is starting trial and had to to blood test bone and ct scans. PSA went from 87 in August to 2.19 but bone scan showed 4 spots instead of 3. So is this good kinda good or not good?

    Actually nurse couldn't read

    Actually nurse couldn't read doctors writing and still only 3 spots one possible "healing" oncologist explained was very pleased with results.

  • VascodaGama
    VascodaGama Member Posts: 3,557 Member
    Oligometastatic treatment

    So far, the decrease in the PSA demonstrates improvements. It means that your husband's type of PCa responds to hormonal treatments and that he can expect a long period of survival. The CT result has nothing to do with this improvement. The oncologist may be pleased for confirming the previous results for a fewer number of metastases. If these spots are located at convenient areas then it may be possible to radiate them for good. You could inquire if your husband's case can be considered for an oligometastatic treatment. There is in fact a clinical trial for such patients. Please read this;

    https://clinicaltrials.gov/ct2/show/NCT01859221

    You can find details here; https://www.verywell.com/sir-spheres-to-treat-liver-metastases-2782224

    Best wishes for a good Christmas to both of you.

    VG

  • Sadie marie
    Sadie marie Member Posts: 63
    January PSA down to .17. In 4

    January PSA down to .17. In 4 months PSA has gone from 87 to .17. Is this fast enough and how much lower should it go. 

  • Old Salt
    Old Salt Member Posts: 984 Member
    Great test results!

    We can't answer your questions whether the lowering of the PSA is fast enough and how low the PSA will go. But to me, these results appear to be outstanding. Clearly, for now, the cancer cells are sensitive to the lowering of the testosterone and dying. You and your husband should be very pleased.

    What about the side effects; I hope that they are manageable.

  • Sadie marie
    Sadie marie Member Posts: 63
    edited January 2017 #81
    Old Salt said:

    Great test results!

    We can't answer your questions whether the lowering of the PSA is fast enough and how low the PSA will go. But to me, these results appear to be outstanding. Clearly, for now, the cancer cells are sensitive to the lowering of the testosterone and dying. You and your husband should be very pleased.

    What about the side effects; I hope that they are manageable.

    We don't know if he is

    We don't know if he is getting the xtandi as it is a blind trial. He has fatigue and hot flashes and no libido. Gained a little weight but has joined the YMCA and continues to walk. Sometimes he seems in a fog and a little forgetful. The libido is the worse side effect but he is positive and in good spirits.