Radium 223 Treatment

worried wife 223
worried wife 223 Member Posts: 4
in Prostate Cancer #1

Hello,my name is JoAnn and my husband is Bill. We live in Virginia and have been married 50 years this past July.

Bill was diagnosed 3 years ago on Sept.15th with aggressive stage 4 prostate cancer that had metastasized to his bones. He went through the Provenge treatment,he had radiation on his spine,was put on Xtandi which worked for a while.Along the way he has had quite a few bone scans done which showed the cancer shrinking,ever so slightly but was hopeful none the less.

 Up until April of this year he was doing great,he was fishing,going out on his kayak,he went ziplining,he stayed very active for the most part.

In March he started having trouble walking,he had a PetScan done and found out the cancer had wrapped around his sciatica nerve causing him great pain and difficulty in walking. His oncologist sent him to a neurologist and the neurologist suggested surgery(actually had the next morning) he did say it could come back in a day,a week,a month,etc,there would be no guarantees.

He had a bone scan done after healing from his surgery and what was a small spot had now spread much larger. He is now on Radium223,has completed 3 of the shots and I have watched him go steadily downhill. He has lost from 200 lbs in April down to 161lbs and the biggest drop has been in the past 3 months. He is having trouble with one of his legs wanting to cross over and even with his walker can barely walk and has absolutely no appetite.

 last month I told his oncologist something needs to be done,look at him he is emanciated,it was then that he said he would get a bone scan on his next visit which is on the 21st of this month. My instincts keep telling me that this Radium 223 is not the thing for him to be taking but Im not at all sure. I have looked online and found little encouragement or discouragment for this Radium223 . This treatment is a shot of nuclear medicine once a month for 6 months.

He has taken Dronebal to increase his appetite which caused him to hallucinate (threw those down the drain) and now he is on megestrol,going into his 3rd week. Seems to help sometimes but still not kicked in like we are hoping it would.

I dont mean to sound like such a downer here,but if there is anyone here who has had this treatment,or is going through this treatment or knows of anyone who has been through this Radium 223, please share with me what you know,We would be so grateful.

 

I hope that all of you that are fighting cancer,no matter where in your body it is,I pray that you all keep strong,and find the right treatments for you and you will beat this disease and hopefully someday there will be no such disease existing. Love and Blessings to you all

 

 

 

 

 

 

Comments

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    #2
    Care with Anemia

    Hi, JoAnn (Worried wife)

    I am sorry for the condition of Bill. At most, I strongly recommend him to avoid anemia.

    I say this because of your description of his debilitating status and know about fatal cases due to convulsive anemia. In fact I read several patients reporting about their bad experience when using Xofigo. You could contact directly them via (CSN) e-mail. You can find their acronyms in the thread of Grey Ghost (Jim) to get details of their experiences. They discuss about the drug in his latest thread is this link;
    http://csn.cancer.org/node/252406

    In any case, many patients have done well with Xofigo; however, there are requirements and cautious notes to consider before starting the infusions and while having the drug. Your husband should stop taking it if his status deteriorates considerably. Please discuss with his oncologist after reading details from this link;

    http://www.drugs.com/xofigo.html

    Warnings and Precautions

    “Bone Marrow Suppression: Measure blood counts prior to treatment initiation and before every dose of Xofigo. Discontinue Xofigo if hematologic values do not recover within 6 to 8 weeks after treatment. Monitor patients with compromised bone marrow reserve closely. Discontinue Xofigo in patients who experience life-threatening complications despite supportive care measures.”

    Patient Counseling Information

    “To be compliant with blood cell count monitoring appointments while receiving Xofigo. Explain the importance of routine blood cell counts. Instruct patients to report signs of bleeding or infections.

    To stay well hydrated and to monitor oral intake, fluid status, and urine output while being treated with Xofigo. Instruct patients to report signs of dehydration, hypovolemia, urinary retention, or renal failure / insufficiency.”

    As commented by Grey Ghost in his post above, he stopped taking the drug in the mid of his protocol schedule. He may also have taken other medications to counter the side effects.

    I hope my “directions” lead you to the answers you looking for.

    Best wishes.

    VGama

  • Rakendra
    Rakendra Member Posts: 197 Member
    #3
    Wellness

    Beloved Friend,

         This is not an easy post to make, or to read.  Either he will improve or he will not.  But for now, just look at what is going on in the moment.  Some of his treatments have helped, others have done great damage, and you and I are not able to tell which is which.  My choice was not to take the strong, relatively untested drugs that can destroy the immune system and make quality of life unbearable.  When you have a terminal illness, quality of life may be more important than length of life.  It appears that current  treatment is taking him.  My advice would be to take a look now at what your objectives are and if these objectives are possible.  What is his quality of life?  What can you do to make it better?  It is not always possible to extend life, but it is always possible to improve life.  Time is an invention of man; it does not exist in the Universe where there is only Now and Eternity.  Forget about how long, and think about now.  So, how can you and he make Now better.  Meditation is one way, and this can be only listening to beautiful music.  Here are some suggestions:

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

     

    Healing music - 432HZ DNA REPAIR MODE

           I also love the music of Ken Keyes on You Tube  https://www.youtube.com/watch?v=TWATvSCXLeQ

    Now, this may open up ways of being that can make your lives more full with less stress.  I cannot tell you what treatments to accept.  I can say that for me, I am not going to accept unknown consequences for unproven toxic treatments.  Time is not important for me, quality of life is.  Forget time and just concentrate on This moment.  Read my post, Heal Yourself.  Start getting this positive healing energy into your life.  Make your time left have value in the moment.  No worries about tomorrow or next week.  Open your hearts to each other and share love in the moment without the worry of impending disaster.  I also do not like fighting cancer.  I like accepting it, working with it, and learning what lessons it is here to give me.  My wife and I have shared such deep loving moments that would NEVER have come without the cancer.  But these moments can only come with a heart full of love, and will be lost with a head full of worry.  Read my post here: http://csn.cancer.org/node/263139

      I advise reassessing your goals.  Read the Short Happy life of Francis Macomber by Hemmingway.  It is not about how long one lives, it is about how one lives.  You can still have a lot left if you do not measure how long.  Be very careful of doctors.  And, we are all here for you.

    Living love always – all ways living love

    Much love, swami rakendra

     

     

  • Rakendra
    Rakendra Member Posts: 197 Member
    #4
    Love and Wellness

    Beloved Friend,

         This is not an easy post to make, or to read.  Either he will improve or he will not.  But for now, just look at what is going on in the moment.  Some of his treatments have helped, others have done great damage, and you and I are not able to tell which is which.  My choice was not to take the strong, relatively untested drugs that can destroy the immune system and make quality of life unbearable.  When you have a terminal illness, quality of life may be more important than length of life.  It appears that current  treatment is taking him.  My advice would be to take a look now at what your objectives are and if these objectives are possible.  What is his quality of life?  What can you do to make it better?  It is not always possible to extend life, but it is always possible to improve life.  Time is an invention of man; it does not exist in the Universe where there is only Now and Eternity.  Forget about how long, and think about now.  So, how can you and he make Now better.  Meditation is one way, and this can be only listening to beautiful music.  Here are some suggestions:

     

    Healing music - 432HZ DNA REPAIR MODE

           I also love the music of Ken Keyes on You Tube  https://www.youtube.com/watch?v=TWATvSCXLeQ

    Now, this may open up ways of being that can make your lives more full with less stress.  I cannot tell you what treatments to accept.  I can say that for me, I am not going to accept unknown consequences for unproven toxic treatments.  Time is not important for me, quality of life is.  Forget time and just concentrate on This moment.  Read my post, Heal Yourself.  Start getting this positive healing energy into your life.  Make your time left have value in the moment.  No worries about tomorrow or next week.  Open your hearts to each other and share love in the moment without the worry of impending disaster.  I also do not like fighting cancer.  I like accepting it, working with it, and learning what lessons it is here to give me.  My wife and I have shared such deep loving moments that would NEVER have come without the cancer.  But these moments can only come with a heart full of love, and will be lost with a head full of worry.  Read my post here: http://csn.cancer.org/node/263139

      I advise reassessing your goals.  Read the Short Happy life of Francis Macomber by Hemmingway.  It is not about how long one lives, it is about how one lives.  You can still have a lot left if you do not measure how long.  Be very careful of doctors.  And, we are all here for you.

     

    Much love, swami rakendra

  • worried wife 223
    worried wife 223 Member Posts: 4
    #5
    VascodaGama said:

    Care with Anemia

    Hi, JoAnn (Worried wife)

    I am sorry for the condition of Bill. At most, I strongly recommend him to avoid anemia.

    I say this because of your description of his debilitating status and know about fatal cases due to convulsive anemia. In fact I read several patients reporting about their bad experience when using Xofigo. You could contact directly them via (CSN) e-mail. You can find their acronyms in the thread of Grey Ghost (Jim) to get details of their experiences. They discuss about the drug in his latest thread is this link;
    http://csn.cancer.org/node/252406

    In any case, many patients have done well with Xofigo; however, there are requirements and cautious notes to consider before starting the infusions and while having the drug. Your husband should stop taking it if his status deteriorates considerably. Please discuss with his oncologist after reading details from this link;

    http://www.drugs.com/xofigo.html

    Warnings and Precautions

    “Bone Marrow Suppression: Measure blood counts prior to treatment initiation and before every dose of Xofigo. Discontinue Xofigo if hematologic values do not recover within 6 to 8 weeks after treatment. Monitor patients with compromised bone marrow reserve closely. Discontinue Xofigo in patients who experience life-threatening complications despite supportive care measures.”

    Patient Counseling Information

    “To be compliant with blood cell count monitoring appointments while receiving Xofigo. Explain the importance of routine blood cell counts. Instruct patients to report signs of bleeding or infections.

    To stay well hydrated and to monitor oral intake, fluid status, and urine output while being treated with Xofigo. Instruct patients to report signs of dehydration, hypovolemia, urinary retention, or renal failure / insufficiency.”

    As commented by Grey Ghost in his post above, he stopped taking the drug in the mid of his protocol schedule. He may also have taken other medications to counter the side effects.

    I hope my “directions” lead you to the answers you looking for.

    Best wishes.

    VGama

    thank you

    VGama,thank you so much for your reply and information,staying hydrated is very important and I do encourage Bill to drink lots of water but he still does not drink enough in my opinion but he is trying. He gets so tired of my "getting on him" as he calls it about eating and drinking fluids. I do realize how frustrating this is for him. We go Wednesday to get another bone scan to see if we see any signs of the cancer shrinking,hopefully will be good news. Thank you again and I wish you the best on your journey forward. Take good care

  • worried wife 223
    worried wife 223 Member Posts: 4
    #6
    Rakendra said:

    Wellness

    Beloved Friend,

         This is not an easy post to make, or to read.  Either he will improve or he will not.  But for now, just look at what is going on in the moment.  Some of his treatments have helped, others have done great damage, and you and I are not able to tell which is which.  My choice was not to take the strong, relatively untested drugs that can destroy the immune system and make quality of life unbearable.  When you have a terminal illness, quality of life may be more important than length of life.  It appears that current  treatment is taking him.  My advice would be to take a look now at what your objectives are and if these objectives are possible.  What is his quality of life?  What can you do to make it better?  It is not always possible to extend life, but it is always possible to improve life.  Time is an invention of man; it does not exist in the Universe where there is only Now and Eternity.  Forget about how long, and think about now.  So, how can you and he make Now better.  Meditation is one way, and this can be only listening to beautiful music.  Here are some suggestions:

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

     

    Healing music - 432HZ DNA REPAIR MODE

           I also love the music of Ken Keyes on You Tube  https://www.youtube.com/watch?v=TWATvSCXLeQ

    Now, this may open up ways of being that can make your lives more full with less stress.  I cannot tell you what treatments to accept.  I can say that for me, I am not going to accept unknown consequences for unproven toxic treatments.  Time is not important for me, quality of life is.  Forget time and just concentrate on This moment.  Read my post, Heal Yourself.  Start getting this positive healing energy into your life.  Make your time left have value in the moment.  No worries about tomorrow or next week.  Open your hearts to each other and share love in the moment without the worry of impending disaster.  I also do not like fighting cancer.  I like accepting it, working with it, and learning what lessons it is here to give me.  My wife and I have shared such deep loving moments that would NEVER have come without the cancer.  But these moments can only come with a heart full of love, and will be lost with a head full of worry.  Read my post here: http://csn.cancer.org/node/263139

      I advise reassessing your goals.  Read the Short Happy life of Francis Macomber by Hemmingway.  It is not about how long one lives, it is about how one lives.  You can still have a lot left if you do not measure how long.  Be very careful of doctors.  And, we are all here for you.

    Living love always – all ways living love

    Much love, swami rakendra

     

     

    Thank You

    Rakendra,thank you so very much.I so enjoyed your post and I so enjoy who you are. You are a very wise and spiritual soul and your goodness shines through so beautifully. I listened to that song by Ken Keye (put on my favorites) and found myself singing along and feeling so uplifted by it.

    I have meditation tapes and have gotten into it a while back but havent for a long while now but reading your post has made me want to get back into it for I know how healing and freeing it can be. I plan on doing my best to get Bill into listening to some of this wonderful music on youtube and also to the many cds I have. I especially like the sounds of nature,nature is so beautiful and so healing in itself.

    I admire your strength in your decision to not take the strong drugs associated with this cancer and I do wish you the very best and I hope you and your wife have a long and wonderful life together going forward. Once again, I thank you and may you always be blessed

     

    PS: should change my nickname to Hopeful Wife Laughing

  • grey ghost
    grey ghost Member Posts: 33
    #7
    Dear worried wife,
    I am the

    Dear worried wife,

    I am the Grey Ghost VG referred to on his post. I had five treatments with Radium 223. At first I was excited about begining the regimen and had no apparant side effects. Then about thres  months in I experienced rise IN PSA (1.8-123). Other tests were greatly effected as well such as Potassiom, Alk Phos, Blood counts, etc., to life threatening levels.

    However the oncologist just wanted to press along.

    This is just my experience. But is a strong word of caution. Have a serious talk with your doctor.

    Jim

Discussion Boards