So confused, worried and clueless about my dad's prostate cancer and Zytiga

My dad is 75.  He now has "castration resistant" or hormone resistant prostate cancer becuase he has cancer now in his lymph nodes and abomen despite being on hormones.  So he is going off the hormones and trying Zytiga.  My extensive research is that he is in late state prostate cancer and the survival rate is 1-2 years (obviously varies on many factors but generally the prognosis is quite poor).  So we went in to the doctor who was trying to break the news to my dad.  My dad was upset and the doctor said he would probably live another five years.  This is totally contradictory to anything I have read.  And my dad is generally in poor health.  He has bad nueropathy.  Anyone have experience with Zytiga or have any input on his true predicament?  

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    Drug

     

    I helped a friend dying of PCa through Zytiga and Jevtana two years ago. Both have the usual chemo-like side effects: fatigue, weakness. The Both often cause severe diarrhea. Jevtana can cause hair loss, but I don't think Zytiga ordinarily does.  Zytiga is not a "true" chemo, but works more as a second-line form of HT. Zytiga is a pill, whereas Jevtana (which is a "true chemo" ["cytotoxic"] itself) is given as an IV drip.

    Both are, as you know, for metastatic, hormonially resistant, end stage PCa.  But note this: they are for use AFTER Taxotere (Taxotere is another name for Docetaxel, the most common chemo for PCa) or similiar chemotherapy has been used and failed.

    Has your dad run the course of chemo yet ?  Doctors can alter this sequencing if they see fit, and I have read at this board of more than one guy starting these two drugs before conventional chemo, but that is not the ordinary chain of events. (See the info I have linked below. FDA approvial for both was initially for post-Taxotere use, but was later expanded to include basically any use that an oncologist wants to put them to.)  The drugs are advertised to give incremential extensions of life expectancy.  What I read then was one could expect (if I remember correctly) about a three month (or more) life extension from each, but the studies that these estimates were based on had relatively few patients to analyze back then, since both drugs are (relatively) new.  It may be that since then the estimates are for more time. I have also read accounts of guys here being on one or the other of these for well over a year.

    Doctor estimates of survival time are more educated guesses than anything else.  My friend had fought the disease over 13 years, and his PSA was at 1,000, so the disease was just ravaging his body.  But he died less than a year after beginning those two drugs (which are given sequentially, not at the same time).  But his was just one example. And be aware that he also had benefited from about a year of conventional chemo before stating Jevtana or Zytiga. It may be that at his age your dad will get another five years, but, like you, that number to me seems improbable.

    Your dad is fortunate to have a son like you working for his well-being, trying to determine what the truth is, and what, if anything, can be done for him.  It is difficult for him, but for you as well. 

    A personal note: I have done huge amounts of chemo myself (five drugs, at 140% of recommended lifetime dose) for lymphoma.  Any chemotherapy drug is hell; it is a miserable feeling. I felt like I had lighter fluid in my veins, not blood. Gary felt like hell on these drugs.  It is a judgement every patient must make, whether or not to use them. Some have an easier time with a given drug than the next guy might; it is basically the luck of the draw. Chemo side-effects are mostly unpredictable. There are around 200 FDA approved chemo drugs in the US, and virtually every one of them has at least 20 possible side-effects. They differ drug to drug, but nearly all cause extreme weakness. Most skew numerous blood counts, and most weaken the immune system.  Some are curative, and some are not. One guy will get one side effect, while another man won't.  Chemos used for advanced, metastatic PCa are never regarded as curative, however, but rather pallative -- they extend life, and usually mitigate symptoms, such as tumor pain, by shrinking tumors, sometimes very significantly. But they do not cure.

    max

    Jevtana:  http://chemocare.com/chemotherapy/drug-info/Jevtana.aspx

    Zytiga: http://chemocare.com/chemotherapy/drug-info/zytiga.aspx

    Taxotere (conventional chemo for PCa) http://chemocare.com/chemotherapy/drug-info/Taxotere.aspx

     

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    Second line HT drugs

    Samuel

    There is no “time scale” to tell how long one lives when stricken by cancer. Doctors use often the typical mile stones indicated in their practicing guide lines, but these are never accurate.
    I understand you are upset with the news however your dad’s doctor’s comment could signify simply that advanced PCa cases under chemo treatment may last about two years. In any case, advanced status could have several interpretations.

    The important is to find out how advanced the case is and focus on a therapy that includes quality of living. I wonder about his past ADT protocol and about the extent of the metastases. Castrate resistant is a condition attributed to patients when a particular hormonal drug or protocol fails, but such is not the “end of the line”. Oncologists typically “switch” protocols or use second-line HT drugs before starting chemo, or use both concomitantly. Zytiga makes part of the “arsenal” used by oncologist as a second-line HT drug. There is another drug used for the same effect named Ketoconazole. Both interact with medications taken for other illnesses which must be considered before being recommended. These drugs continue the ADT when cancer has spread to organs (such as the lymph nodes) and the patient become immune to traditional antiandrogens’ effects (Casodex, etc).

    Regarding the metastases, these may be spot radiated if located at propitious areas, even in tissues previously radiated but still under the maximum limits of RT absorption. In symptomatic patients radiologists treat pain with spot RT or they refer patients to doses of marijuana.

    I recommend you to get second opinions from two different medical oncologists. They may have different experiences in treating PCa advanced cases. Here you have videos by the famous Dr. Myers in regards to advanced PCa treatments. Scroll them down to educate on the wide possibilities of drugs in use for treating cases as that of your father. Some guys manage controls over ten years of treatment.

    https://www.youtube.com/watch?v=kkak51haCPo

    https://askdrmyers.wordpress.com/

    Best wishes and luck in his journey.

    VGama

  • samuel01
    samuel01 Member Posts: 6

    Drug

     

    I helped a friend dying of PCa through Zytiga and Jevtana two years ago. Both have the usual chemo-like side effects: fatigue, weakness. The Both often cause severe diarrhea. Jevtana can cause hair loss, but I don't think Zytiga ordinarily does.  Zytiga is not a "true" chemo, but works more as a second-line form of HT. Zytiga is a pill, whereas Jevtana (which is a "true chemo" ["cytotoxic"] itself) is given as an IV drip.

    Both are, as you know, for metastatic, hormonially resistant, end stage PCa.  But note this: they are for use AFTER Taxotere (Taxotere is another name for Docetaxel, the most common chemo for PCa) or similiar chemotherapy has been used and failed.

    Has your dad run the course of chemo yet ?  Doctors can alter this sequencing if they see fit, and I have read at this board of more than one guy starting these two drugs before conventional chemo, but that is not the ordinary chain of events. (See the info I have linked below. FDA approvial for both was initially for post-Taxotere use, but was later expanded to include basically any use that an oncologist wants to put them to.)  The drugs are advertised to give incremential extensions of life expectancy.  What I read then was one could expect (if I remember correctly) about a three month (or more) life extension from each, but the studies that these estimates were based on had relatively few patients to analyze back then, since both drugs are (relatively) new.  It may be that since then the estimates are for more time. I have also read accounts of guys here being on one or the other of these for well over a year.

    Doctor estimates of survival time are more educated guesses than anything else.  My friend had fought the disease over 13 years, and his PSA was at 1,000, so the disease was just ravaging his body.  But he died less than a year after beginning those two drugs (which are given sequentially, not at the same time).  But his was just one example. And be aware that he also had benefited from about a year of conventional chemo before stating Jevtana or Zytiga. It may be that at his age your dad will get another five years, but, like you, that number to me seems improbable.

    Your dad is fortunate to have a son like you working for his well-being, trying to determine what the truth is, and what, if anything, can be done for him.  It is difficult for him, but for you as well. 

    A personal note: I have done huge amounts of chemo myself (five drugs, at 140% of recommended lifetime dose) for lymphoma.  Any chemotherapy drug is hell; it is a miserable feeling. I felt like I had lighter fluid in my veins, not blood. Gary felt like hell on these drugs.  It is a judgement every patient must make, whether or not to use them. Some have an easier time with a given drug than the next guy might; it is basically the luck of the draw. Chemo side-effects are mostly unpredictable. There are around 200 FDA approved chemo drugs in the US, and virtually every one of them has at least 20 possible side-effects. They differ drug to drug, but nearly all cause extreme weakness. Most skew numerous blood counts, and most weaken the immune system.  Some are curative, and some are not. One guy will get one side effect, while another man won't.  Chemos used for advanced, metastatic PCa are never regarded as curative, however, but rather pallative -- they extend life, and usually mitigate symptoms, such as tumor pain, by shrinking tumors, sometimes very significantly. But they do not cure.

    max

    Jevtana:  http://chemocare.com/chemotherapy/drug-info/Jevtana.aspx

    Zytiga: http://chemocare.com/chemotherapy/drug-info/zytiga.aspx

    Taxotere (conventional chemo for PCa) http://chemocare.com/chemotherapy/drug-info/Taxotere.aspx

     

    Max, thank you.  You helped

    Max, thank you.  You helped me tons.  I am so sorry for all you have gone through.  The fact that you are here helping others is amazing.  My dad has not had any other chemotherapy drugs.  He just became hormone resistant.  He and his doctors are hesitant to throw any heavier drugs at him because of his nueropathy which is very disabling.  I went loaded for bear with pages of information and questions and the doctor answered them all.  But I did not think it was realistic for him to tell my dad he would live another five years.  I will get another opinion.  I am not sure some doctor being more realistic with my dad will be helpful for him.  And I am not advocating that.  I am just trying to gage his true situation.  I am thinking of taking a leave at work if this starts to take a turn for the worse.  But it is hard to plan.  I guess that is the ugliness of cancer.  Thank you again, so much.  

  • samuel01
    samuel01 Member Posts: 6

    Second line HT drugs

    Samuel

    There is no “time scale” to tell how long one lives when stricken by cancer. Doctors use often the typical mile stones indicated in their practicing guide lines, but these are never accurate.
    I understand you are upset with the news however your dad’s doctor’s comment could signify simply that advanced PCa cases under chemo treatment may last about two years. In any case, advanced status could have several interpretations.

    The important is to find out how advanced the case is and focus on a therapy that includes quality of living. I wonder about his past ADT protocol and about the extent of the metastases. Castrate resistant is a condition attributed to patients when a particular hormonal drug or protocol fails, but such is not the “end of the line”. Oncologists typically “switch” protocols or use second-line HT drugs before starting chemo, or use both concomitantly. Zytiga makes part of the “arsenal” used by oncologist as a second-line HT drug. There is another drug used for the same effect named Ketoconazole. Both interact with medications taken for other illnesses which must be considered before being recommended. These drugs continue the ADT when cancer has spread to organs (such as the lymph nodes) and the patient become immune to traditional antiandrogens’ effects (Casodex, etc).

    Regarding the metastases, these may be spot radiated if located at propitious areas, even in tissues previously radiated but still under the maximum limits of RT absorption. In symptomatic patients radiologists treat pain with spot RT or they refer patients to doses of marijuana.

    I recommend you to get second opinions from two different medical oncologists. They may have different experiences in treating PCa advanced cases. Here you have videos by the famous Dr. Myers in regards to advanced PCa treatments. Scroll them down to educate on the wide possibilities of drugs in use for treating cases as that of your father. Some guys manage controls over ten years of treatment.

    https://www.youtube.com/watch?v=kkak51haCPo

    https://askdrmyers.wordpress.com/

    Best wishes and luck in his journey.

    VGama

    Thank you so much.  I am

    Thank you so much.  I am watching the video now.  I also just found two other places I can take him to get another opinion.  You are right about that.  I really appreciate it and it was so great to hear from you after a night of virtually no sleep.  

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    samuel01 said:

    Max, thank you.  You helped

    Max, thank you.  You helped me tons.  I am so sorry for all you have gone through.  The fact that you are here helping others is amazing.  My dad has not had any other chemotherapy drugs.  He just became hormone resistant.  He and his doctors are hesitant to throw any heavier drugs at him because of his nueropathy which is very disabling.  I went loaded for bear with pages of information and questions and the doctor answered them all.  But I did not think it was realistic for him to tell my dad he would live another five years.  I will get another opinion.  I am not sure some doctor being more realistic with my dad will be helpful for him.  And I am not advocating that.  I am just trying to gage his true situation.  I am thinking of taking a leave at work if this starts to take a turn for the worse.  But it is hard to plan.  I guess that is the ugliness of cancer.  Thank you again, so much.  

    Chemo and HT resistance?

    While it sounds like chemo is still called for, did you and your father discuss the possibility of physical castration w/his doctors as final attempt to stem testosterone production?  If not, it may be something worth talking about in conjuction w/his chemotherapy.

    Good luck!

     

     

  • samuel01
    samuel01 Member Posts: 6

    Chemo and HT resistance?

    While it sounds like chemo is still called for, did you and your father discuss the possibility of physical castration w/his doctors as final attempt to stem testosterone production?  If not, it may be something worth talking about in conjuction w/his chemotherapy.

    Good luck!

     

     

    Hi No.  That never came up.

    Hi No.  That never came up.  But I will definitely ask.  Thank you for the suggestion.  

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    Work

    Samuel,

    Be aware that the US Federal Family Medical Leave Act (FMLA) protects immediate family caregivers from termination of their employment while attending to a catastrophically ill loved one. My wife filed for it in 2009 when I was diagnosed with the lymphoma.

    I too have neuropathy, which is usually caused either by diabetes or chemotherapy. There are FDA approved drugs for diabetes-induced neuropathy, but not for neuropathy caused by chemo.  I was part of a clinical trial for chemo neuropathy treatment, and was given a lot of information regarding it by the hospital running the study (the drug under study was a cream, and judged a failure).

    max