News from MDACC

ralph.townsend1
ralph.townsend1 Member Posts: 359 Member
Well went to MDACC on Monday to comfirm what I suspected. My psa is on the rise and the doctor's at MDACC do not have a plan B to keep the Monster at this stage. I will continue the Zytiga for the next 4 months as the cancer finds it's home. Which will be the bones or any one of the major organ's or both. This is per the MDACC doctor's and this sucks. There is other drug's like MDV3100, but do not qualify for it's or Provenge.

The direction they want to go in is to fight the cancer at the next level. I also ask the question of time. They said the drug that I will go on will be rough and that about 2 years.

On a good note Zytiga did give me 12 month and the cancer being a sleep and tumor's smaller.

God Bless

Life is beautiful!
«1

Comments

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    What Can I Say?
    When I hear news like this, I'm really at a loss and I usually say nothing.

    All I can say is that I wish you well and hope that you're able to eventually control and quell the cancer.

    It sounds like it will be a tough fight but you seem to have a positive outlook on life and the will to do what it takes to avoid losing it.

    Best wishes and good luck!
  • cchqnetman
    cchqnetman Member Posts: 119
    Courage and Persistence
    I admire your courage and persistence. I truly hope you win this one!!

    Best of luck!!

    David
  • Samsungtech1
    Samsungtech1 Member Posts: 351
    Medical trials
    Ralph,
    Have they said anything about trials? You need to check on this. I have been given some dire predictions. Now they say Iam in good shape. Everyday is great. We sometimes forget about this, but something comes along to get your attention. If I can help just let me know.

    Mike
  • mrspjd
    mrspjd Member Posts: 694 Member
    Bittersweet
    Ralph,

    Sad news but delivered with the grace and dignity of a humble man who has a zest for living and a love of life.  There is something we all can learn from your positive perspective & strong spirit.   I have every hope that new, improved and effective PCa drugs & txs, now in the medical pipeline or in clinical trials, will benefit you if/when you so choose, and extend your journey as you travel this uncertain road. 

    Your kind thoughtful posts are a welcome addition to this forum.  Sincere wishes for all the very best to you and yours.

    mrs pjd
  • VascodaGama
    VascodaGama Member Posts: 3,495 Member
    mrspjd said:

    Bittersweet
    Ralph,

    Sad news but delivered with the grace and dignity of a humble man who has a zest for living and a love of life.  There is something we all can learn from your positive perspective & strong spirit.   I have every hope that new, improved and effective PCa drugs & txs, now in the medical pipeline or in clinical trials, will benefit you if/when you so choose, and extend your journey as you travel this uncertain road. 

    Your kind thoughtful posts are a welcome addition to this forum.  Sincere wishes for all the very best to you and yours.

    mrs pjd

    Life continues to be beautiful
    Ralph

    Your post is short and depressing. Sincerely I cannot understand your doctor’s comment.
    I am sorry for the news on the progress but is it the end of the line in HT? I do not think so.
    Similar drugs to Zytiga such as Ketoconazole (in action for 20 years) got very good results in PCa advanced treatment. This acts similarly to Zytiga, it is affordable and a substitute to control intratumoral cancer activity.
    Instead of discussing the next “level” it might be worth to discuss about the next “step”.

    The team at MD has been good in the control with Zytiga but they follow the trial’s protocol. They may want to introduce you a continuing trial (probably already established) for the ones who have failed Zytiga.
    I would discuss with them on alternatives away from the “Zytiga environment”. Probably speaking with someone (doctor) that is not involved in the trial.

    I would recommend you to get this book that explains in clear words about possible drugs in your next step as well as the ones for your next level. Very informative about options and the side effects of the drugs;
    “Promoting Wellness Beyond Hormone Therapy: Options for Prostate Cancer Patients”, by Mark Moyad.

    I would go further and suggest you to get a consultation away from MD to have a wider picture of your case. It does not mean that you move away from the team at MD but to give you a different perspective of the future.

    Life continues to be beautiful.

    Cheer up buddy.

    Best.
    VG
  • ralph.townsend1
    ralph.townsend1 Member Posts: 359 Member

    Life continues to be beautiful
    Ralph

    Your post is short and depressing. Sincerely I cannot understand your doctor’s comment.
    I am sorry for the news on the progress but is it the end of the line in HT? I do not think so.
    Similar drugs to Zytiga such as Ketoconazole (in action for 20 years) got very good results in PCa advanced treatment. This acts similarly to Zytiga, it is affordable and a substitute to control intratumoral cancer activity.
    Instead of discussing the next “level” it might be worth to discuss about the next “step”.

    The team at MD has been good in the control with Zytiga but they follow the trial’s protocol. They may want to introduce you a continuing trial (probably already established) for the ones who have failed Zytiga.
    I would discuss with them on alternatives away from the “Zytiga environment”. Probably speaking with someone (doctor) that is not involved in the trial.

    I would recommend you to get this book that explains in clear words about possible drugs in your next step as well as the ones for your next level. Very informative about options and the side effects of the drugs;
    “Promoting Wellness Beyond Hormone Therapy: Options for Prostate Cancer Patients”, by Mark Moyad.

    I would go further and suggest you to get a consultation away from MD to have a wider picture of your case. It does not mean that you move away from the team at MD but to give you a different perspective of the future.

    Life continues to be beautiful.

    Cheer up buddy.

    Best.
    VG

    Disappointing
    I 'm little concern that you think that it is a magic thing for this cancer. I think you hope for a greater special shot that cure's it all.... The drug for this cancer is not there!!! It will be soon, but later than we hope..

    I have went to UT southwestern Cancer center in Dallas, beside going to MDACC, plus VA Hospital which is a joke for care of this cancer. I have look at the second choice's and MDACC bought two of there best cancer doctor's in and said i was ugly too. I don't think a diet or watching what I eat will make the different with this cancer per MDACC.

    OR trying to do a drug that they do not approve for this cancer !!! I think that MDACC is on target with this Cancer.

    They think there is a hope of a new test going on.

    Thank you for all you do, VG you are a life line and always be there!!!

    God bless

    God bless USA
  • laserlight
    laserlight Member Posts: 165

    Disappointing
    I 'm little concern that you think that it is a magic thing for this cancer. I think you hope for a greater special shot that cure's it all.... The drug for this cancer is not there!!! It will be soon, but later than we hope..

    I have went to UT southwestern Cancer center in Dallas, beside going to MDACC, plus VA Hospital which is a joke for care of this cancer. I have look at the second choice's and MDACC bought two of there best cancer doctor's in and said i was ugly too. I don't think a diet or watching what I eat will make the different with this cancer per MDACC.

    OR trying to do a drug that they do not approve for this cancer !!! I think that MDACC is on target with this Cancer.

    They think there is a hope of a new test going on.

    Thank you for all you do, VG you are a life line and always be there!!!

    God bless

    God bless USA

    Ralph
    We can all agree that prostate cancer sucks big time. What I found with this monster is that you have to follow what you feel is the best treatment path.

    It looks like your doctors at MDACC are on target.

    Prostate cancer for the most part is not a one size fits all.

    Different drugs and treatment methods have success and failures.

    I welcome the day that a medication arrives that cures Prostate cancer, in my case that would be to late, but for future generations very welcomed.

    I now use all of my life skills in this fight.

    Keep the faith and hang in there, We are all brothers in this fight


    Kurt
  • Samsungtech1
    Samsungtech1 Member Posts: 351

    Disappointing
    I 'm little concern that you think that it is a magic thing for this cancer. I think you hope for a greater special shot that cure's it all.... The drug for this cancer is not there!!! It will be soon, but later than we hope..

    I have went to UT southwestern Cancer center in Dallas, beside going to MDACC, plus VA Hospital which is a joke for care of this cancer. I have look at the second choice's and MDACC bought two of there best cancer doctor's in and said i was ugly too. I don't think a diet or watching what I eat will make the different with this cancer per MDACC.

    OR trying to do a drug that they do not approve for this cancer !!! I think that MDACC is on target with this Cancer.

    They think there is a hope of a new test going on.

    Thank you for all you do, VG you are a life line and always be there!!!

    God bless

    God bless USA

    Things
    Ralph,
    I am so sorry for what youare going through. One question, did you mean they are saying you are too ugly to save or your cancer is? Confusing. Anyhow bro it is as good as it gets. Please check trials.
    Take care bro.

    Mike
  • caseyh
    caseyh Member Posts: 63

    Things
    Ralph,
    I am so sorry for what youare going through. One question, did you mean they are saying you are too ugly to save or your cancer is? Confusing. Anyhow bro it is as good as it gets. Please check trials.
    Take care bro.

    Mike

    A Second Opinion
    Ralph

    I am in my 13th year of survival, but still battling disease. Over the years I have been treated at an Ivy League university hospital and at a world famous cancer center. My doctors were both highly regarded professionally and highly regarded in the prostate cancer community. Despite the excellence of these institutions and the doctors, I eventually found it necessary to seek out doctors, who in my opinion, offered better treatment options for my disease. I think that it is safe to say that the reputation of an institution does not always guarantee the best available care for all of its patients.

    I believe that all of us with with intermediate to high risk disease will spend the rest of our lives managing the disease. I also believe that treating the disease is both a science and an art. Large institutions tend not to be very flexible with their treatment protocols. There are five or six university hospitals in NYC, and they all approach the treatment of Pca pretty much from the same perspective. Some top-notch Pca oncologists outside of these institutions have a broader philosophical approach to treating Pca.

    I agree with VG's suggestion that you seek the opinion of another Pca oncologist. A fresh perspective from a doctor who thinks “out of the box” would be extremely valuable. This is not to suggest that you are not receiving excellent care at MDACC, but rather to suggest that there are some doctors who might offer a different perspective on how to best approach your disease.

    VG mentioned in another post that Dr. Charles Myers is his hero. Mine too. He is especially good with advanced PCa cases and worthy of your consideration for a consultation. We constantly tell people to get second opinions at the time of diagnosis. I think that it is even more important at times like this. I hope that you will give the idea some consideration.

    I am a Vietnam era veteran who never left the U.S. I was a Fire Control Operator on a Nike Hercules site for 3 ½ years. I thank you for your service and wish you all the best. I have read many of your posts, and I have come to greatly admire you over time.

    Best Regards,
    Caseyh
  • ralph.townsend1
    ralph.townsend1 Member Posts: 359 Member

    Ralph
    We can all agree that prostate cancer sucks big time. What I found with this monster is that you have to follow what you feel is the best treatment path.

    It looks like your doctors at MDACC are on target.

    Prostate cancer for the most part is not a one size fits all.

    Different drugs and treatment methods have success and failures.

    I welcome the day that a medication arrives that cures Prostate cancer, in my case that would be to late, but for future generations very welcomed.

    I now use all of my life skills in this fight.

    Keep the faith and hang in there, We are all brothers in this fight


    Kurt

    Thanks
    Kurt, I'm ready to rumble and thank for your support. I think MDACC is got a next drug for me to test. I HOPE!

    I believe!!!

    God Bless
  • ralph.townsend1
    ralph.townsend1 Member Posts: 359 Member

    Things
    Ralph,
    I am so sorry for what youare going through. One question, did you mean they are saying you are too ugly to save or your cancer is? Confusing. Anyhow bro it is as good as it gets. Please check trials.
    Take care bro.

    Mike

    Ugly
    This is a great word. I remember the picture of me first in Vietnam. Such a young and happy person. I saw a picture a year later and there was changes in the look in my face.

    Now 40 years later my hands shake, left leg limps, I'm sick in side, I forget where i'm going, and plus the pain is thoughout my body. Forget the monstor in side or what normal people would say Prostate cancer.

    Thank you Mike!
  • ralph.townsend1
    ralph.townsend1 Member Posts: 359 Member
    caseyh said:

    A Second Opinion
    Ralph

    I am in my 13th year of survival, but still battling disease. Over the years I have been treated at an Ivy League university hospital and at a world famous cancer center. My doctors were both highly regarded professionally and highly regarded in the prostate cancer community. Despite the excellence of these institutions and the doctors, I eventually found it necessary to seek out doctors, who in my opinion, offered better treatment options for my disease. I think that it is safe to say that the reputation of an institution does not always guarantee the best available care for all of its patients.

    I believe that all of us with with intermediate to high risk disease will spend the rest of our lives managing the disease. I also believe that treating the disease is both a science and an art. Large institutions tend not to be very flexible with their treatment protocols. There are five or six university hospitals in NYC, and they all approach the treatment of Pca pretty much from the same perspective. Some top-notch Pca oncologists outside of these institutions have a broader philosophical approach to treating Pca.

    I agree with VG's suggestion that you seek the opinion of another Pca oncologist. A fresh perspective from a doctor who thinks “out of the box” would be extremely valuable. This is not to suggest that you are not receiving excellent care at MDACC, but rather to suggest that there are some doctors who might offer a different perspective on how to best approach your disease.

    VG mentioned in another post that Dr. Charles Myers is his hero. Mine too. He is especially good with advanced PCa cases and worthy of your consideration for a consultation. We constantly tell people to get second opinions at the time of diagnosis. I think that it is even more important at times like this. I hope that you will give the idea some consideration.

    I am a Vietnam era veteran who never left the U.S. I was a Fire Control Operator on a Nike Hercules site for 3 ½ years. I thank you for your service and wish you all the best. I have read many of your posts, and I have come to greatly admire you over time.

    Best Regards,
    Caseyh

    Thank you
    Hi, thank you your kindness and interest.

    Question, what were your Gleason numbers?

    What treatments- drugs have you received?

    Where are you now?

    God bless you!!!

    Thank you for your service!!!
  • caseyh
    caseyh Member Posts: 63

    Thank you
    Hi, thank you your kindness and interest.

    Question, what were your Gleason numbers?

    What treatments- drugs have you received?

    Where are you now?

    God bless you!!!

    Thank you for your service!!!

    Some Quick Answers to Your Questions
    Surgery(Open) - July 2000
    Gleason - 3+4 - raised to 4+3 after surgery
    Salvage Radiation (39 Txs) - July 2003
    Hormonal Therapy (12 months) - Begin Feb. 2004
    Zometa Infusions (Quarterly) - July 2004 - June 2006
    Revlimid (28 day cycles - multiple txs)- June 2006 - Sept. 2009
    Leukine Injections – (daily x 30 with 5 months off)- Dec. 2005 - Sept. 2009
    Lymph Node Radiation (38 Txs) Sept. 2011 - Nov. 2011

    Current PSA has remained steady around 2.0 for last 11 months. Repeated scans show no
    disease. Current treatment plan is to control the disease using supplements. We are in a "tweaking" process and will return to hormonal therapy and/or other drugs when and if necessary.
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    caseyh said:

    Some Quick Answers to Your Questions
    Surgery(Open) - July 2000
    Gleason - 3+4 - raised to 4+3 after surgery
    Salvage Radiation (39 Txs) - July 2003
    Hormonal Therapy (12 months) - Begin Feb. 2004
    Zometa Infusions (Quarterly) - July 2004 - June 2006
    Revlimid (28 day cycles - multiple txs)- June 2006 - Sept. 2009
    Leukine Injections – (daily x 30 with 5 months off)- Dec. 2005 - Sept. 2009
    Lymph Node Radiation (38 Txs) Sept. 2011 - Nov. 2011

    Current PSA has remained steady around 2.0 for last 11 months. Repeated scans show no
    disease. Current treatment plan is to control the disease using supplements. We are in a "tweaking" process and will return to hormonal therapy and/or other drugs when and if necessary.

    Keep Up The Fight
    Casey:

    That's quite a saga and makes me feel quite fortunate for the comparatively insignificant post treatment discomfort that I'm currently experiencing.

    It also reminds me to shut up when the issues involve things I have no personal knowledge or experience about and to give due regard to the men here (like you) who do.

    Good luck & best wishes!
  • ralph.townsend1
    ralph.townsend1 Member Posts: 359 Member
    caseyh said:

    Some Quick Answers to Your Questions
    Surgery(Open) - July 2000
    Gleason - 3+4 - raised to 4+3 after surgery
    Salvage Radiation (39 Txs) - July 2003
    Hormonal Therapy (12 months) - Begin Feb. 2004
    Zometa Infusions (Quarterly) - July 2004 - June 2006
    Revlimid (28 day cycles - multiple txs)- June 2006 - Sept. 2009
    Leukine Injections – (daily x 30 with 5 months off)- Dec. 2005 - Sept. 2009
    Lymph Node Radiation (38 Txs) Sept. 2011 - Nov. 2011

    Current PSA has remained steady around 2.0 for last 11 months. Repeated scans show no
    disease. Current treatment plan is to control the disease using supplements. We are in a "tweaking" process and will return to hormonal therapy and/or other drugs when and if necessary.

    A well fought battle!
    I'm so sorry for your fight and you hang in there. Wow to have radiation. After I had proton radiation, they burn the heck out me, and to this day I have bowel disfunction. What area's are your tumor's in? Having a aggressive type of cancer that gets to your Lymph node. It is in all Lymph nodes throughout the whole body. To try and radiated one area or remove that set of Lypmh nodes is a losing battle, and all the damage done in that area.

    A blood born Prostate cancer that is aggressive, which can have very low psa, can be as deadly as a psa that is way high. The doctors at MDACC said that I will probaly always be on the low side as it will grow some place and we will able to see it.

    I have been to a specialist oncologist in dallas that deals with alternative choice and he look at all the records from VA hospital and MDACC. In his words, That I should stay the course that i"m on, and also I'm Ugly too!

    VG is very right in how we should always keep fighting and looking for different choice's. I'm Realistic in my approach to my monster or as normal people call it Prostate cancer. I told my MDACC doctor's to always tell me like it is.

    As i will always tell y'all.

    Good luck

    God bless
  • caseyh
    caseyh Member Posts: 63

    A well fought battle!
    I'm so sorry for your fight and you hang in there. Wow to have radiation. After I had proton radiation, they burn the heck out me, and to this day I have bowel disfunction. What area's are your tumor's in? Having a aggressive type of cancer that gets to your Lymph node. It is in all Lymph nodes throughout the whole body. To try and radiated one area or remove that set of Lypmh nodes is a losing battle, and all the damage done in that area.

    A blood born Prostate cancer that is aggressive, which can have very low psa, can be as deadly as a psa that is way high. The doctors at MDACC said that I will probaly always be on the low side as it will grow some place and we will able to see it.

    I have been to a specialist oncologist in dallas that deals with alternative choice and he look at all the records from VA hospital and MDACC. In his words, That I should stay the course that i"m on, and also I'm Ugly too!

    VG is very right in how we should always keep fighting and looking for different choice's. I'm Realistic in my approach to my monster or as normal people call it Prostate cancer. I told my MDACC doctor's to always tell me like it is.

    As i will always tell y'all.

    Good luck

    God bless

    I Hear You
    Ralph:

    Good Luck on your journey!!

    To answer your question, I've had two Feraheme MRIs so we know there is no longer cancer in the lymph nodes. This is now a case of micrometastases. Who knows where?

    God Bless

    Caseyh
  • caseyh
    caseyh Member Posts: 63

    Keep Up The Fight
    Casey:

    That's quite a saga and makes me feel quite fortunate for the comparatively insignificant post treatment discomfort that I'm currently experiencing.

    It also reminds me to shut up when the issues involve things I have no personal knowledge or experience about and to give due regard to the men here (like you) who do.

    Good luck & best wishes!

    Stay Positive
    Thanks Swing. I've been following your journey as well. If there is one thing that I have learned over the years, it is that try as hard as I might, I cannot anticipate what tomorrow will bring. I've been wrong countless times, and I've spent a lot of time worrying about PCa events that turned out not to be overwhelming. Stay positive! Enjoy life! You have a long road ahead. Good luck on your journey.
  • laserlight
    laserlight Member Posts: 165

    Ugly
    This is a great word. I remember the picture of me first in Vietnam. Such a young and happy person. I saw a picture a year later and there was changes in the look in my face.

    Now 40 years later my hands shake, left leg limps, I'm sick in side, I forget where i'm going, and plus the pain is thoughout my body. Forget the monstor in side or what normal people would say Prostate cancer.

    Thank you Mike!

    Ralph, pictures
    On my way to Viet nam, weight was 175 lbs, on my return home weight was 128 lbs with jaundice. Viet nam hit us all it was ugly. Keep up the fight

    Kurt
  • Samsungtech1
    Samsungtech1 Member Posts: 351

    Ralph, pictures
    On my way to Viet nam, weight was 175 lbs, on my return home weight was 128 lbs with jaundice. Viet nam hit us all it was ugly. Keep up the fight

    Kurt

    Ugly
    I came back with sores, and leech bites on body, and face, weighed 128 as well was 6' 2". Had dysentry for a couple months. One pill stopped it and one pill made it open up. It took over a year to get my weight back, but my body never seemed to give up the runs for about 18 months after I got back. Had a private doctor and he had no idea what was going on. Met a chinese lady, when I lived in Chinatown in S.F. She cured me. Not sure what she did but I finally started putting on weight, and no more runs. Life is a puzzle, no way to explain what happened to me, but sometimes you meet the right person and it all works. I lived in an apt. In Chinatown and was doing laundry when a chinese funeral went by. They were something to watch and while watching this lady from laundry started talking ro me and it led to my going to her business, would not pass any business tests, but she worked on me for two months and stopped this.

    Go figure.

    Mike
  • laserlight
    laserlight Member Posts: 165

    Ugly
    I came back with sores, and leech bites on body, and face, weighed 128 as well was 6' 2". Had dysentry for a couple months. One pill stopped it and one pill made it open up. It took over a year to get my weight back, but my body never seemed to give up the runs for about 18 months after I got back. Had a private doctor and he had no idea what was going on. Met a chinese lady, when I lived in Chinatown in S.F. She cured me. Not sure what she did but I finally started putting on weight, and no more runs. Life is a puzzle, no way to explain what happened to me, but sometimes you meet the right person and it all works. I lived in an apt. In Chinatown and was doing laundry when a chinese funeral went by. They were something to watch and while watching this lady from laundry started talking ro me and it led to my going to her business, would not pass any business tests, but she worked on me for two months and stopped this.

    Go figure.

    Mike

    Forgot one thing
    Jungle rot, PTSD, and all of the other problems that everybody had no understanding of. The jungle rot was the worse. From my mid section down to my knees real bad rash and skin break out. What more can I say. I forgot, also diet of not being able to handle normal food. It was ugly again. My family was not able to undestand why I was yellow in color, how do you explain sun tan with yellow from the jaundice.

    Now it is Prostate cancer, since that time I gained weight to a normal level. During that time I remember being unable to eat due to the heat and humidity.

    I ran on about 1 meal a day, could not do any more due to the heat, enviorment.

    Yes it was ugly, my whole body was wasted. I hated the odors, smells, and everything else.

    I at this point in time enjoy the aisian diet and foods, they do have a healing effect.

    What more can I say, Mike and Ralph you triggered memories that I donot regret Thank You. This is great.


    Kurt