Recurrent prostate CA after six years post surgery, radiation

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Comments

  • grey ghost
    grey ghost Member Posts: 33
    Joshua19 said:

    more advice on radium 223

    I am new to this site.  Found it last night as I was becoming a bit anxious about the fact that my spouse is to start radium 223 this week.  He has NO symptoms at all, no bone pain but his last med Xtandi seemed to have stopped being effective.  I have read a couple blogs now that sound like side effects of radium 223 are WAY  worse then how my spouse feels now.  His last scans reportedly showed a net decrease in bone mets despite rising PSA.  I almost want to wait a bit before rushing into something that may spead up his decline, give him symtoms way worse then the no symptoms he has now.  Any thoughts.

    Radium 223

    Dear Joshua,

    Good to have you join this site. Regarding Radium 223, I will give you my personal observations.

    I did not experience side effects following my first two treatments. About three weeks after the third I developed a slight fever with muscle aches for a few days. After the fourth  treatment, these symptoms plus great fatigue over 4-5 days occurred. Then I really became ill after the fith and was hospitalized as described in my previous post. What made no sense to me was that my PSA rose from 1.8 to 310 during this time. Will have to wait for the CT and bone scan to evaluate if the Radium had any positive effect. Will follow up.

    Important: I kept telling my oncologist that I had no pain, bone or otherwise, thinking that was a good thing. However she said that when the tumers are confined in the bone there are no pain receptors. It is only when the tumors begin to put pressure on nerves leading out of the bones or along side them will pain develop.

    Bottom line: I think you and your spouse need to rely on the skill of your oncologist and perhaps get a second opinion. My cancer is aggresive so I believed that I had no choice but to try the Radium. Timing is everything.

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,752 Member

    Radium 223

    Dear Joshua,

    Good to have you join this site. Regarding Radium 223, I will give you my personal observations.

    I did not experience side effects following my first two treatments. About three weeks after the third I developed a slight fever with muscle aches for a few days. After the fourth  treatment, these symptoms plus great fatigue over 4-5 days occurred. Then I really became ill after the fith and was hospitalized as described in my previous post. What made no sense to me was that my PSA rose from 1.8 to 310 during this time. Will have to wait for the CT and bone scan to evaluate if the Radium had any positive effect. Will follow up.

    Important: I kept telling my oncologist that I had no pain, bone or otherwise, thinking that was a good thing. However she said that when the tumers are confined in the bone there are no pain receptors. It is only when the tumors begin to put pressure on nerves leading out of the bones or along side them will pain develop.

    Bottom line: I think you and your spouse need to rely on the skill of your oncologist and perhaps get a second opinion. My cancer is aggresive so I believed that I had no choice but to try the Radium. Timing is everything.

     

    Bone Pain

    It may be useful information for some that my friend Gary, who will have died two years ago next month (September) never had any bone pain, ever. His last year his PSA never went below around 400, and at times surpassed 1,000. 

    His PCa fight was right at 14 years, and during that whole time he seemed mostly in good health and very active. In fact, of that 14 years, only the last two months were ugly and painful. Until that final two months, he was still living alone.  The Jevtana caused severe stool problems, but he had suffered radiation fissures years earlier, and that minght have been a factor.

    In my view, his 14 years of wellness and vitality after PCa diagnosis constituted an impressive success and win .

    max

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,752 Member
    Joshua19 said:

    questioning benefits of radium 223

    From what I read about 223 it was "fast tracked" to approval because it decreased bone pain and prolonged life by 3 months.  3 MONTHS!!!!!  I think given the side effects we would have to question quantity vs. quality of life.  3 months doesn't seem like much if you're in severe pain and can't get out of bed or work.  Thoughts please.

    See above

    What any new drug will do for any patient is a statistically garnered "average."  About half of all those patients will do better than "average," and side-effects vary also.  This is true not just of the radium, but the assortment of new post-chemo drugs that have been FDA approved during the last four years or so (Zytiga, Jevtana, and others).

    In the poker game that is cancer treatment, each man just has to play his own hand with his own skill and according to his own priorities.  Everyone understands that each plays by his own rules and priorities.

    max

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,752 Member

    Taxotere

    Hi Max,

    Thank you for your thoughtful response and links.

    I am prepared to withstand the side effects of Taxotere for as long as possible. I hope I will have the necessary fortitude.

    My oncologist mentioned that I will need a port. I was not aware of Jevtana, which in encouraging as well as the possible somewhat longer term effectiveness of Taxotere for some folks.

    Best to you.

     

    Others

    Grey,

    A port install goes on either the right or left side of your chest, not far below the collar bone. A cath tube is run to the largest vein in the body, the superior vena cava. It is a minor surgery, 30 minutes max. Some oncologists have it done in their offices, but usually it is an outpatient proceedure at a hospital.  A small disc is stiched (under the skin)  to adjacent muscle to keep the disc in place, on which is mounted a small rubberish ball, maybe the size of a marble. Infusion needles can be insterted into this ball, so that you are not constantly having your arm and hand veins dug to insert a cath there.  My experience is that a port is way more pleasant than constantly having new caths inserted. Hand caths also are in such small veins that long-term chemo can potentially "burn them out."  A port is also way better than a "PIC Line," which is inserted under the armpit, and which requires that you walk around with tubing handing down your side all the time.

    Some chemos are "vesicants" or "blister agents," and many cancer centers require that the patient have a port ino rder to receive vesicants, but these rules vary from cancer center to center (Taxotere is not a vesicant). But regardless, a port is always the safest way to receive chemo.

    I did not read all of your earlier stuff, but Zytiga is also a post-chemo option in many cases, if you have not already used it. Gary did the Taxotere-Zytiga-Jevtana series, but not in a systematic or ideal manner.  I suspect that he could have added a year to his life if he had proceeded according to doctor and drug protocols.

    max

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

  • VascodaGama
    VascodaGama Member Posts: 3,525 Member

    See above

    What any new drug will do for any patient is a statistically garnered "average."  About half of all those patients will do better than "average," and side-effects vary also.  This is true not just of the radium, but the assortment of new post-chemo drugs that have been FDA approved during the last four years or so (Zytiga, Jevtana, and others).

    In the poker game that is cancer treatment, each man just has to play his own hand with his own skill and according to his own priorities.  Everyone understands that each plays by his own rules and priorities.

    max

    A great fighter

    Jim

    You are a great fighter and I admire your endeavour. Max gave you helpful opinions. The good is to know that you still got weapons to continue the battle. I think you are doing it well by stopping any intervention when the quality of living is at risk or became unbearable. I sincerely hope this next treatment improves the situation and maintains it for a long period of time, giving you peace of mind.

    Try enjoying life to the best you can against the odds. Travelling has been good to me. What do you like?

    Best wishes and luck in your journey ahead.

    VGama

  • Cherie51
    Cherie51 Member Posts: 1
    Joshua19 said:

    more advice on radium 223

    I am new to this site.  Found it last night as I was becoming a bit anxious about the fact that my spouse is to start radium 223 this week.  He has NO symptoms at all, no bone pain but his last med Xtandi seemed to have stopped being effective.  I have read a couple blogs now that sound like side effects of radium 223 are WAY  worse then how my spouse feels now.  His last scans reportedly showed a net decrease in bone mets despite rising PSA.  I almost want to wait a bit before rushing into something that may spead up his decline, give him symtoms way worse then the no symptoms he has now.  Any thoughts.

    radium 223

    Just wanted to share my husbands experience with Radium 223. He tried Zytiga as well as Xtandi. Both made him very sick and weak and miserable. Both were discontinued after a couple months because they weren't working. Then he began to have a lot of back pain. Since it was in several places, our oncologist decided not to do spot radiation and we went with Xofigo. I must say, within that first injection, the pain went away; however, within 24 hrs he had severe diarrhea for days, stomach pain, nausea, and generally feeling terrible, lasting two weeks. The second month was similar but when he got his Lupron shot, it got even worse and this time lasted about 3 wks. The third and fourth month, we had to go to our Dr and get IV fluids to help with the dehydration from the diarrhea. The 5th month, Aug. 13, our Dr told the hospital to give him extra fluids after the injection. It helped and he didn't get as sick until about a week later..but still a bit better. What bothers me is he didn't have any more pain after the first month. We asked to stop the shots after month 4 and they said "the pamplet says to do 6 injections so we shouldn't discontinue it." He is very weak and his stomach is hurting all the time and why are we still doing this? I feel like its all just data. See how long they can do it..what the side effects are .etc....

    And by the way, when he first got so sick with the diarrhea, I called the hospital and they said that isn't a side effect. OMG, its on the web site for the drug. 

    I would never do this drug unless you are having pain. That is all its supposed to do. Don't do it until the time when its needed. It only helps for so long ..so why radiate your gut and damage your bone marrow unless you need to. Just me two cents!

     

  • grey ghost
    grey ghost Member Posts: 33

    See above

    What any new drug will do for any patient is a statistically garnered "average."  About half of all those patients will do better than "average," and side-effects vary also.  This is true not just of the radium, but the assortment of new post-chemo drugs that have been FDA approved during the last four years or so (Zytiga, Jevtana, and others).

    In the poker game that is cancer treatment, each man just has to play his own hand with his own skill and according to his own priorities.  Everyone understands that each plays by his own rules and priorities.

    max

    Thanks Max for your input.

    I was one who was a definite outlier with Radium 223. My oncologist at MGH kept insisting that even though my PSA and Alk Phos doubled every month, it probably didn't mean much. Well, it did. I was hospitalized three time for 5 days each after the 4th and then after the 5th treatment due to severe dehydration, K+ less than 2.0, fever, anemia, etc. I stopped the 6th treatment on my own as the first five nearly killed me and will have lasting negative effects.

    By the way, I fired that oncologist and am under much better care now.

    Like you said it is a poker game. I am now going on xtandi with a new deck of cards.

    Jim

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,752 Member

    Thanks Max for your input.

    I was one who was a definite outlier with Radium 223. My oncologist at MGH kept insisting that even though my PSA and Alk Phos doubled every month, it probably didn't mean much. Well, it did. I was hospitalized three time for 5 days each after the 4th and then after the 5th treatment due to severe dehydration, K+ less than 2.0, fever, anemia, etc. I stopped the 6th treatment on my own as the first five nearly killed me and will have lasting negative effects.

    By the way, I fired that oncologist and am under much better care now.

    Like you said it is a poker game. I am now going on xtandi with a new deck of cards.

    Jim

     

    Super

    Thanks for the update.  Too few patients demand that the doctor they use be someone who holds their own view of things and what course is best.     I hope the drug does you tremendous good.

     

    max

  • RonDeF
    RonDeF Member Posts: 15
    Grey Ghost

    Jim,

    On another note, any chance you attended Westford Academy?  I went there and our mascot was a Greay Ghost. 

    Ron

  • RonDeF
    RonDeF Member Posts: 15
    Grey Ghost

    Jim,

    Glad to hear that you are receiving better care . 

    Ron

  • grey ghost
    grey ghost Member Posts: 33
    RonDeF said:

    Grey Ghost

    Jim,

    On another note, any chance you attended Westford Academy?  I went there and our mascot was a Greay Ghost. 

    Ron

     
    Hi Ron,
    No, that was

     

    Hi Ron,

    No, that was not me. The grey ghost is one of my favorite streamer flies for salmon fishing. 

  • grey ghost
    grey ghost Member Posts: 33
    Xofigo Warning

    Hi,


    Please stop Xofigo if your PSA and or Alkaline Phosphatase levels rise sharply while you are on your six month course of treatment.  Have a serious discussion with your doctor.

    Five treatments almost killed me and required multiple hospitalizations for critically low Portassium levels, blood volume, extreme fatigue. My new oncologists blamed all problems on Xofigo.