Prostate Cancer Metastasized to my Spine

My prostate and surrounding tissues were surgically removed in April 2014 and I also received follow-on radiation treatment and hormone blocking therepy (Firmagon). While my PSA levels declined to almost zero, the weight gain lead to the onset of Type 2 Diabetes. I remained in that condition for nearly two years. Then in 2016 my PSA levels started to climb rapidly. In April 2016, my PSA was 0.08. By the middle of August it had jumped to 1.82 and by the end of December, it was at 3.20. Earlier this week, at my regular three month check-up with my Oncologist, I requested some tests and then had a bone scan and a CT Scan. These tests revealed anomolies on my spine at T-11 and L-4 which jibes with the pain I've been feeling in my lower back and a slight numbness and weakness in my arms for the last few weeks. I'm going to get a bone biopsy on my spine in the next couple of days to try and further clarify the picture for my doctors and will also start with another Oncologist who specializes in Chemotherepy, Hormonal Therepy, and Immunotherepy. Does anyone have any experience with this type of Advanced Prostate Cancer and advise on what seems to work best. I've heard good things about immunotherepy and a new treatment called Xofigo. Thanks for your help.

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Comments

  • VascodaGama
    VascodaGama Member Posts: 3,513 Member
    Sequential treatments

    I am sorry for the advance status. Palliative therapies are usually the sequential in your management but these only provide control. You could aim cure if oligometastases are the case. Please follow these threads;

    https://csn.cancer.org/node/296402

    https://csn.cancer.org/comment/1509277#comment-1509277

    https://csn.cancer.org/comment/1548017

    Xofigo is recommended to fight PCa in bone but it has attached side effects which you should check before deciding. In such regards maybe Lu 177 is better. You can read opinions on this matter in this link;
    https://pcnrv.blogspot.pt/2016/10/lu-177-psma-617-another-update.html

    Best wishes in your continuing journey,

    VGama

  • Mark58
    Mark58 Member Posts: 41
    Xofigo

    I have been battling Prostate Cancer for 13 long years. I am currently being given Xofigo or Radium 223. I've had 3 infusions so far. My mets had spread to my spine, hips, and ribs. My most recent psa was 128. I am not having any major side effects from the Xofigo. Better than I had expected since every drug/treatment has side effects. I'm afraid I am running out of options for treatment. I think chemo is my only option left. I have had , Xtandi, Zytiga, Provenge and now Xofigo. I should know by the end of this month whether or not it is working. I am still getting a Lupron shot every 3 months and still taking Zytiga. The Xofigo seems to me to be a logical treatment. Radium is in the same family as Calcium which means it is a bone seeker. It emits alpha particles which are meant to combat cancer cells. I am 71 now and feel very fortunate to be still enjoying life. I'm not sure I have answered your questions. Best of luck to you!!

  • GeneRose1
    GeneRose1 Member Posts: 64
    Mark58 said:

    Xofigo

    I have been battling Prostate Cancer for 13 long years. I am currently being given Xofigo or Radium 223. I've had 3 infusions so far. My mets had spread to my spine, hips, and ribs. My most recent psa was 128. I am not having any major side effects from the Xofigo. Better than I had expected since every drug/treatment has side effects. I'm afraid I am running out of options for treatment. I think chemo is my only option left. I have had , Xtandi, Zytiga, Provenge and now Xofigo. I should know by the end of this month whether or not it is working. I am still getting a Lupron shot every 3 months and still taking Zytiga. The Xofigo seems to me to be a logical treatment. Radium is in the same family as Calcium which means it is a bone seeker. It emits alpha particles which are meant to combat cancer cells. I am 71 now and feel very fortunate to be still enjoying life. I'm not sure I have answered your questions. Best of luck to you!!

    Thanks Mark. I'm 59 and

    Thanks Mark. I'm 59 and moving to a new phase of this journey. I think the biggest lesson learned for me from all this is to be vigilant and to not accept the "see you in three months" response when action is clearly needed. I am very heartened by your response and wish you all the best. My oncologist says that many new treatments for prostate cancer are coming out and I sincerely hope you find one that gets that PSA down to 0.00. Take care and all the best.

  • Old Salt
    Old Salt Member Posts: 934 Member

    Sequential treatments

    I am sorry for the advance status. Palliative therapies are usually the sequential in your management but these only provide control. You could aim cure if oligometastases are the case. Please follow these threads;

    https://csn.cancer.org/node/296402

    https://csn.cancer.org/comment/1509277#comment-1509277

    https://csn.cancer.org/comment/1548017

    Xofigo is recommended to fight PCa in bone but it has attached side effects which you should check before deciding. In such regards maybe Lu 177 is better. You can read opinions on this matter in this link;
    https://pcnrv.blogspot.pt/2016/10/lu-177-psma-617-another-update.html

    Best wishes in your continuing journey,

    VGama

    About Lu177

    As a follow up to Vasco's post, the compound that (I think) he refers to (Lu177) is a Lu-177 linked agent (ligand) that binds to PSMA on prostate cancer cells (PSMA is largely specific to prostate cancer cells). This approach has been developed and evaluated in Germany and looks quite promising. It is currently not routinely available in the USA, but there has been a clinical trial at Sloan-Kettering (NYC). The trial has been completed, but results have not been published according to the website clinicaltrials.gov

    I believe that one can get treatment in Germany.

    PS: Is the immunotherapy that you are considering Provenge? 

  • GeneRose1
    GeneRose1 Member Posts: 64
    Mark58 said:

    Xofigo

    I have been battling Prostate Cancer for 13 long years. I am currently being given Xofigo or Radium 223. I've had 3 infusions so far. My mets had spread to my spine, hips, and ribs. My most recent psa was 128. I am not having any major side effects from the Xofigo. Better than I had expected since every drug/treatment has side effects. I'm afraid I am running out of options for treatment. I think chemo is my only option left. I have had , Xtandi, Zytiga, Provenge and now Xofigo. I should know by the end of this month whether or not it is working. I am still getting a Lupron shot every 3 months and still taking Zytiga. The Xofigo seems to me to be a logical treatment. Radium is in the same family as Calcium which means it is a bone seeker. It emits alpha particles which are meant to combat cancer cells. I am 71 now and feel very fortunate to be still enjoying life. I'm not sure I have answered your questions. Best of luck to you!!

    Xofigo

    Mark, How are things going for you? I've had a lot of tests that show precisely where in my bones the prostate cancer has migrated to. Next Monday I start with Casodex and will take that for quite a while. About two weeks from now, I'll get my first Lupron Shot and will probably be getting those for as long as it continues to work on my cancer. I hope the Xofigo is doing some good for you and gets that PSA down to 0.01. Take care and stay in touch. Best/Gene

  • Mark58
    Mark58 Member Posts: 41
    edited February 2017 #7
    GeneRose1 said:

    Xofigo

    Mark, How are things going for you? I've had a lot of tests that show precisely where in my bones the prostate cancer has migrated to. Next Monday I start with Casodex and will take that for quite a while. About two weeks from now, I'll get my first Lupron Shot and will probably be getting those for as long as it continues to work on my cancer. I hope the Xofigo is doing some good for you and gets that PSA down to 0.01. Take care and stay in touch. Best/Gene

    Xofigo

    I have had a setback. I now have a compression fracture on my L1 vertebrae. My Oncologist has postponed the last 3 Xofigo treatments until the Spine Center at Vanderbilt has determined how best to treat my fracture. My PSA is currently at 130.6 .  I am still on Lupron and Zytiga. Hopefully that will keep PSA from rising. One thing after the other. I just take all this one day at a time and live my life as completely as I can. Lupron worked for me about 5 years when it started to slowly rise. Hopefully it will work as well or better for you. I will try to answer any questions you have. Best of luck to you.

  • VascodaGama
    VascodaGama Member Posts: 3,513 Member
    Update on LU 177 clinical trial

    GeneRose and Mark,

    Your exchanged discussions are of high interest for all PCa survivors confronting systemic cases (me included). Mark in particular sharing his experience with Xofigo (radium 223) which may be at present the only easy to take medication targetting cure by killing the bandit on the spot (wherever it's glued to bone). This drug has been linked to bone marrow suppression symptoms (decrease in production of cells responsible for providing immunity) and such should be under vigilance. I hope that Mark's vertebrae fracture resolves the soonest for him to continue with Xofigo treatment.

    LU 177 commented in my above post is a therapy similar to Xofigo but it covers soft tissues which may turn superior to Xofigo in the treatment of certain PCa cases. LU 177 is now (since Feb 1, 2017) available for trials in the US (news for Old Salt) and the details can be read here;

    https://clinicaltrials.gov/ct2/show/NCT00859781

    There is a long list of excluding criteria so that one needs to verify if his condition is suitable for the trial. I was glad for reading that the serum creatinine can go high above >2.5 mg/dL, which means that I could apply for participation even with CKD. In any case, this is an opportunity of using such an advanced treatment free of charge, safe and under due care. I am not sure if Mark could be accepted for his Xofigo experience but GeneRose could try discussing the matter with his oncologist, particularly because of his diabetes case. The recommended ADT protocol (Casodex plus Lupron) is palliative and will not improve his status. ADT manages to control the advancement of the bandit but is not so prolonged in aggressive types.

    Best wishes for improvements in the treatments of both of you.

    VGama

  • GeneRose1
    GeneRose1 Member Posts: 64

    Update on LU 177 clinical trial

    GeneRose and Mark,

    Your exchanged discussions are of high interest for all PCa survivors confronting systemic cases (me included). Mark in particular sharing his experience with Xofigo (radium 223) which may be at present the only easy to take medication targetting cure by killing the bandit on the spot (wherever it's glued to bone). This drug has been linked to bone marrow suppression symptoms (decrease in production of cells responsible for providing immunity) and such should be under vigilance. I hope that Mark's vertebrae fracture resolves the soonest for him to continue with Xofigo treatment.

    LU 177 commented in my above post is a therapy similar to Xofigo but it covers soft tissues which may turn superior to Xofigo in the treatment of certain PCa cases. LU 177 is now (since Feb 1, 2017) available for trials in the US (news for Old Salt) and the details can be read here;

    https://clinicaltrials.gov/ct2/show/NCT00859781

    There is a long list of excluding criteria so that one needs to verify if his condition is suitable for the trial. I was glad for reading that the serum creatinine can go high above >2.5 mg/dL, which means that I could apply for participation even with CKD. In any case, this is an opportunity of using such an advanced treatment free of charge, safe and under due care. I am not sure if Mark could be accepted for his Xofigo experience but GeneRose could try discussing the matter with his oncologist, particularly because of his diabetes case. The recommended ADT protocol (Casodex plus Lupron) is palliative and will not improve his status. ADT manages to control the advancement of the bandit but is not so prolonged in aggressive types.

    Best wishes for improvements in the treatments of both of you.

    VGama

    Update on Lu-177 Clinical Trial & Mark58

    Whenever I go see my oncologist, I always print out the latest posts from VascodaGama, Mark58, and Old Salt, and review everything in detail with him and his PA. Mark, you've been in this fight for a long time and it's just a setback. If it was easy, anybody could do this! You've got tons of experience in this fight and I'm certain that you'll figure out a way to keep moving forward. You inspire us all and I'm certain good news is just around the corner. VGama, my Oncologist ruled out Xofigo because he believes I'll respond well to the Casodex and Lupron. He believes this will push my PSAs back down to 1.00 or below and get us back to the point in which we can closely monitor it and respond as necessary. I'll discuss the updates on the Lu-177 trials with him at our next meeting. My CT Scan, Bone Scan, and Bone Biopsy revealed that the cancer has indeed moved into my spine at T11, L4, and in my pelvic region. My pain levels are relatively minor and when they flare up, I've been able to get everything back to normal with Advil Liquid Gels. I'll keep everyone posted as I move forward and hope that everyone's next PSA is 0.01.

  • Mark58
    Mark58 Member Posts: 41
    edited February 2017 #10
    Condition Update

    The Spine Center thinks my back will heal without surgery. I'm hoping they are right. I am taking pain pills only when needed. I am sure there are many pain pills in my future, so I use them sparingly. I can't do much without running out of energy. Fatigue is a real problem for me. I hate it! When my great-granddaughter (20 months) comes over she always wants me to walk her thru the yard along with the dog. I do my best to oblige her when I can, but it breaks my heart when I can't. She is the apple of my eye. She has been such a pleasant distraction for me.

    My Oncologist says Taxotere is next for me when I finish with the Xofigo. I dread that for sure. I guess I've read too many stories about Chemo and all the side effects. This is such a personal journey. One of my joys in life has always been anticipation. Planning trips and vacations, looking forward to one thing or another. I've got 3 trips planned for this spring and early summer. I'm just hoping I will have the energy to make them happen. I am keeping no secrets from any of my family regarding my condition. I have worked with folks that kept info about life threatening diseases from everyone including family. I never understood that. As usual, I just have to take it one day at a time. I'll close for now. I'm starting to ramble.

  • Rakendra
    Rakendra Member Posts: 197 Member
    edited February 2017 #11
    Meditation

    Mark, you have a great atitude and acceptance of your situation, and I congratulate you.  I Have mentioned in earlier posts the value of meditation.  I would suggest that you Youtube The am That I am meditation of Dr Wayne dyer.  Also check out Eckhart Tolle on Youtube.  Another suggestion is to research Self-Hypnosis.  Meditation, especially with music background, and hypnosis can be a great aid in pain control.  Also consider that at some point the pain may become so intense that you do not want to continue.  If that becomes the case, you may want to plan for that event ahead of time.  Your continuing gratitude and making the most of your time is a lesson for all of us..  With much love, respect and admiration, Swami Rakendra 

  • VascodaGama
    VascodaGama Member Posts: 3,513 Member
    Not rambling at all

    Mark,

    I appreciate what you write. This is the true story of you as a survivor in this fight. Sadly that many do not share their experiences too. I think you doing it well in informing your family on your symptoms and would suggest for you to talk with them about on how to do the trips even with precarious strength. I also do not sympathize with chemo, but some guys did report good things about the therapy. I guess not every thing is negative.  

    Hope Xofigo still manages to turn the situation in your favor and that you see the PSA going down.

    Best

    VG

  • GeneRose1
    GeneRose1 Member Posts: 64
    Glad to Hear From You Mark

    Mark, I'm really happy that you won't need surgery and that the pain levels are fairly manageable. The fatigue has been an issue for me as well. My work-around has been to take a supplement of B-12 every morning and that seems to help.  I've been on Casodex for the entire month and received my first Lupron injection last week. So far so good on the side effects and the only thing I've noticed is occasional short term memory loss such as a complete blank on whether I took my meds five minutes ago. I think the Firmagon injections were much worse. I had six of those in 2014 & 2015 when the cancer came back after my surgery. THAT was pretty rough with hot flashes, weight gain, and the onset of Type 2 Diabetes. I'm spending a lot of time researching experimental cancer treatments. There's a lot going on and my plan is to get started on one of these trials as soon as it appears that my cancer is back under control. I expect to get my next PSA in August and will probably have a new CT Scan and whole body bone scan at that time as well. If things are looking good, I'm not going to fool around and will be part of the most promising trial that I can qualify for. It's a little frustrating because a lot of of the treatments are for HT resistant PCa and I don't appear to be there yet. Please take care and I hope you find something that knocks down the fatigue. It feels like early spring here in coastal North Carolina and I hope it's pleasant where you're at. Best/Gene

  • Gleason Score 9 and 10
    Gleason Score 9 and 10 Member Posts: 65 Member
    Mark58 said:

    Condition Update

    The Spine Center thinks my back will heal without surgery. I'm hoping they are right. I am taking pain pills only when needed. I am sure there are many pain pills in my future, so I use them sparingly. I can't do much without running out of energy. Fatigue is a real problem for me. I hate it! When my great-granddaughter (20 months) comes over she always wants me to walk her thru the yard along with the dog. I do my best to oblige her when I can, but it breaks my heart when I can't. She is the apple of my eye. She has been such a pleasant distraction for me.

    My Oncologist says Taxotere is next for me when I finish with the Xofigo. I dread that for sure. I guess I've read too many stories about Chemo and all the side effects. This is such a personal journey. One of my joys in life has always been anticipation. Planning trips and vacations, looking forward to one thing or another. I've got 3 trips planned for this spring and early summer. I'm just hoping I will have the energy to make them happen. I am keeping no secrets from any of my family regarding my condition. I have worked with folks that kept info about life threatening diseases from everyone including family. I never understood that. As usual, I just have to take it one day at a time. I'll close for now. I'm starting to ramble.

    Your Journey

    Mark,

    Thank you so much for so honestly sharing your journey...it is real and your attitude is great! One can tell from reading your posts that you get a great deal of meaning out of each day and spending time with your great-granddaughter is precious and invigorating! 

    Sending strength to you to go on each of your three trips this spring/summer as well as the walk in the yard with your great-granddaughter. 

    Once again...thank you for sharing!

    Janice

  • slickjy
    slickjy Member Posts: 26
    GeneRose1 said:

    Glad to Hear From You Mark

    Mark, I'm really happy that you won't need surgery and that the pain levels are fairly manageable. The fatigue has been an issue for me as well. My work-around has been to take a supplement of B-12 every morning and that seems to help.  I've been on Casodex for the entire month and received my first Lupron injection last week. So far so good on the side effects and the only thing I've noticed is occasional short term memory loss such as a complete blank on whether I took my meds five minutes ago. I think the Firmagon injections were much worse. I had six of those in 2014 & 2015 when the cancer came back after my surgery. THAT was pretty rough with hot flashes, weight gain, and the onset of Type 2 Diabetes. I'm spending a lot of time researching experimental cancer treatments. There's a lot going on and my plan is to get started on one of these trials as soon as it appears that my cancer is back under control. I expect to get my next PSA in August and will probably have a new CT Scan and whole body bone scan at that time as well. If things are looking good, I'm not going to fool around and will be part of the most promising trial that I can qualify for. It's a little frustrating because a lot of of the treatments are for HT resistant PCa and I don't appear to be there yet. Please take care and I hope you find something that knocks down the fatigue. It feels like early spring here in coastal North Carolina and I hope it's pleasant where you're at. Best/Gene

    Mark & Gene - I'm in Similar Boat

    After June 2013 prostate removal, my PSA steadily rose, despite subsequent Casodex, 7 weeks pelvic prostate/bed radiation at beginning of 2015 and quarterly Lupron injections.  PSA end of March 2017 was 23.0, has been doubling every 3 months.  PET scan w/Axumin 2 wks ago shows skeletal metastases in ilium and L2 & L5.  I am about to start on the Xofigo treatment.  Mark, how did your Xofigo treatment go?  I saw another post on CSN from someone who had no problems with the Xofigo injections until the 5th one, when he became very ill.  Have you had any adverse reaction?  Gene, has the Casodex/Lupron brought your PSA under control? 

  • GeneRose1
    GeneRose1 Member Posts: 64
    edited May 2017 #16
    Slickjy Fellow Traveler

    Slickjy, Good to hear from you and I hope things are getting better. I started on Casodex at the beginning of February and was on that for a couple of weeks before receiving my first Lupron shot on Feb 20. My last PSA before starting the treatments was 6.6 and I'll get my next PSA and Lupron Shot on May 15. As soon as I know something, I'll post it here. For a while there, my new normal was one continuous hot flash. I also had a lot of pain in my bones (2-3 on a pain scale of 10) that I was able to manage and stay ahead of with Advil Liquid Gels. Now as I get close to the three month mark from my first Lupron Injection, the hot flashes are less severe and the bone pain is much improved. I've been working out a great deal, trying to lose weight and get in the best shape possible to deal with future treatments.

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    edited May 2017 #17
    Sorry to hear you are hitting

    Sorry to hear you are hitting bumps in the road but sounds like you are owning it!

  • GeneRose1
    GeneRose1 Member Posts: 64
    edited May 2017 #18
    Fellow Travelers

    HeWho, Thanks so much. It is remarkable to compare notes with people on this site and learn that, in many cases, our symptoms and outcomes are very similar. Mine and SlickJY's treatment and progression are almost identical. I now spend a great deal of time researching the disease and applying for clinical trials. I think we'll have something approaching a cure within five years and hope that every one of us benefits from that.

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    Gene

    Gene

    As my ex-army friend says, the only mindset to have is "press on!". We are lucky compared to those twenty years ago and will in even better state as you say in five years.

    C

  • slickjy
    slickjy Member Posts: 26
    GeneRose1 said:

    Fellow Travelers

    HeWho, Thanks so much. It is remarkable to compare notes with people on this site and learn that, in many cases, our symptoms and outcomes are very similar. Mine and SlickJY's treatment and progression are almost identical. I now spend a great deal of time researching the disease and applying for clinical trials. I think we'll have something approaching a cure within five years and hope that every one of us benefits from that.

    So Similar

    GeneRose1, you and I are almost mirror images of prostate cancer/treatment.  I am about a year earlier than you, having had surgery in 2013, followed by 2 mos daily radiation &  quarterly Lupron started in Jan 2015.  Casodux started March 2015.  PSA continued to double throughout, every 3 months.  In March, it was 23.0.  Found pc is now in pelvic bone and lower spine, based on PET scan w/Axumin done mid-April.  As stated with you in a thread titled "Xofigo" , I am starting Xofigo tomorrow. Pain has been very minimal throughout all this, a little lower back pain, but that is it. Fingers crossed, hard, that this will work.

  • slickjy
    slickjy Member Posts: 26
    1st of 6 Xofigo Injections

    1st one was May 9th.  Have had little, if any, reaction.  Feel like I do get fatigued more quickly than I used to, but even that is not terribly significant.     Mets in lower spine and upper left ilium, I do also notice increasing lower back pain. Next injection is June 6th.  Quarterly PSA check is also that week.  Had been doubling, last was 23.0, so we will see .... Still also getting quarterly lupron injections.