It has been over a month now since my wife and I traveled to England to get a dose of Lu 177. I thought I would give an update on what it did for me.
That intense bone metastasis pain completely disappeared after about 2 weeks. It was rough going and I needed 24/7 opiates to get any relief. I weened myself off the fentanyl patches and now just take oxycodone 5 mg 1-2 times per day for vague leg cramps and restless legs I get at night.
I was really hoping the extreme fatigue and lethargy would improve as well as my anorexia but unfortunately no improvement after 4 weeks. I did have more vomiting but this has resolved also.
I was supposed to get labs about 2 weeks after the Lu 177 infusion but due to my apathy I finally got them last week.
Impressively, it dropped my PSA from 3000 to 2400. This is pretty rare and from reading the literature out there it is much more common to only get drops in PSA after the 2nd or 3rd treatment. Unfortunately it hit my bone marrow pretty hard and I am pancytopenic now. Hemoglobin is 7.8, Platelets 57, and WBC 2.6. Due to my bones trying to repair themselves my serum calcium dropped to dangerous levels and was likely the cause of my night time restless legs. Serum calcium was 6.9 but more importantly my ionized calcium was 3.7. Alk Phos was 680. I was sent to hospital for IV calcium infusions and disappointedly it did not really help with the fatigue or leg pains at night. Maybe as it climbs higher it will?
Although the travel and treatment costs were very high I am glad I did the Lu 177 therapy for 2 reasons. The top reason is relief from the crazy bone pain. Those of you that are suffering from this my heart goes out to you. I could not believe how intense and relentless that pain was. Secondly this has given me extra time to get my life in order. I did my last will and testament. I returned my car. Due to my condition they kindly took it back 7 months before the lease was finished. I've been trying to do my best to make sure my wife will have everything set up for her if I am not around in the near future. Of course this does not help with the emotional pain of dealing with the death of a loved one. That must be awful for those we leave behind.
So what is the plan? My wife of course wants me around and wants me to do more Lu 177 treatments. I understand her perspective but I am really finding peace with the idea of embracing death instead of trying to swim upstream from it. I also don't think I could tolerate anymore treatments. I would hate to feel even worse than this.
We did meet with a reputable hospice company and the admissions nurse was really wonderful. For now, I will try to get my calcium normalized and hopefully get some bone marrow recovery. Despite the very little pain if this is what life has left for me at 47...lying in bed, lying on the couch, unable to help around the house, exhausted after a 3 hour visit from friends...I am not really interested in this going on for too long.
Peace to all of you.
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Cleodman
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Your post made me cry. My heart aches for you and your wife. I HATE this cancer! You are a fighter and have done your best. I’m happy to hear your intense pain is less and your PSA took a remarkable drop. I am praying for a miracle. Thank you for updating. So many people care about you.
Cleodman - thanks again for another thoughtful post. I think of your journey almost every day and wish you and your family the best. I'm glad you are finding less pain and more peace these days.
I can't say anything else because I'd be a hypocrite if I said I wouldn't give up...or if I said I would give up. I will point out that (as has always seemed to be your style on this forum ) you are still crunching numbers, trending, postulating, philosophizing, and planning...and I think that's great thing for you and everybody you touch - no matter what you decide your course is. - Joe M.
Good luck to you, I hope your journey is pain free and peaceful.
I was just thinking about you the other day, wandering how you were doing. it breaks my heart to read of your latest news.All I can say is stay strong, we are all pulling for you on this site.
My heart goes out to you and your wife. I would recommend that you make videos, take lots of pictures, write...and certainly share with your dear wife what you are feeling. It’s a difficult time for both of you, hold each other, love each other. Sending love and prayers for you both.
Well thought through! I don't know if they will even give you any more Lu-177 with blood numbers that low. I'm glad you got some respite from the pain. Some oncologists are giving a second look at an old kind of chemo, mitoxantrone - it does a good job on pain, but it doesn't prolong life.
That is interesting Allen. That is what was added for one patient that did the APCEDEN vaccines like I did. Here is the paper on him. ncbi.nlm.nih.gov/pmc/articl... To me his response was nothing short of amazing. I only had several bone mets when mine were resolved and I feel for Cleo. I can’t imagine the pain. I wish this treatment was available in the states for those who wanted it. I know you are incredibly studied Allen and wanted to share this with you. Who knows, maybe it’s that type of old chemo that created synergy with the vaccines? They’d need to run a trial to find out.
I talked to the immunologist about this man, and he was still in remission over 2 1/2 years later but sadly passed from COVID last year in India. At least he was able to be in remission for some time. Damn COVID. My wife’s family had three deaths from it so far along with several other people that weren’t family. Can’t wait for my turn for the jab.
Hi Dr.C, Man oh Man you are one tough guy! Thank you for sharing your journey with us. The drop in PSA and resolution of your pain is a good sign. Sorry to hear about the low blood counts and low energy. Take one day at a time for you and your wife. No one wants you to check out before your time. I hope your blood counts improve soon and you regain your strength, energy and weight! You deserve a break from this fight! Take good care🙏
Thank you for sharing your experience and for inspiring us with your strength. I know how your wife must be feeling right now and I can relate when you said she still wants you to get more Lu177 infusions. But I can also understand how hard it must be for you to get another shot as it involves long travel etc. My heart goes out to you both especially since my husband will be the same age as you this year. Please make a lot of videos and happy memories with your wife and loved ones because I believe its a lot harder for the people who will be left behind.
May the Lord guide you with His eternal light as you journey back to Him.
None of us know, nor probably want to know, when our journey will end. We will continue to fight as long as we can. I agree that we need to prepare as best we can to minimize the burden we may leave behind.
I have made sure to update my will, made prearranged funeral arrangements, gotten rid of clothes I no longer need, shredded a lot of paperwork, and am meeting with an estate planning attorney to cover my bases.
Reading this post brings tears to my eyes!!! I’m so so sorry for all of you that have to go through this. I feel sorry for all the wives including myself that hurt so immensely to have to see their partners have to suffer. God knows how heart wrenching it is. I will pray for a miracle for you as well as the men in this forum as well as my husband. 🙏🏻🙏🏻🙏🏻🙏🏻. Keep the faith.
Hey brother- I’m not judging, just asking. Are you keeping your head in a good space for decisions about preparing for a transition like this? ? Do you have the clarity you need for this decision? I know it can be difficult, the mental and emotional preparation. Keep your mind open to if antidepressants or marijuana to help keep your head in a good space, if necessary.
I am listening. Yes I am in a good place. I definitely wanted to make sure that it was not major depression taking over. I have been exploring what people go through when they are actively dying. There are a lot of similarities with major depression so you are wise to ask. I am nearly 100% sure that if I did not travel to England when I did I would not have survived into late February as I am now. I definitely kicked the can down the road doing so. However it did not take me long to realize that quantity of life is far from quality of life. At least for me. This is a tough decision and not something I will rush into but it is also something I thought a lot about and no longer feel the need to fight and resist anymore. We will see what my body can do over the next month or so.
Dear Brave young man . All of us with APC need to make QOL decisions . I pray for a miracle for you and your wife . to change the decline .You’ve gone so far for treatments .. an amazing effort in itself . I hope that you can find relief in the storm To improve your status and for acceptance in peace in love . I am happy that she is by your side always .. this type of love is eternal . Unless one walks along the cliffs edge as you are now , they know not the position. God Bless !
I do understand. I am here to offer any support you need. I was approaching that place 15 mo back preparing, then I got very lucky. Do you have children? I started writing my children, letters for friends to mail in the future for life events. It was difficult, but helped me find peace. I also started more of a meditation practice and worked with a zen priest friend of mine. I’m not religious but I would read some from the ‘Tibetan book of living and dying’ and then meditate on what I read, then discuss with my zen friend. It helped me find peace. I was most concerned about my children, not their care after my passing- but what they would remember and how they would remember my last days. I wanted to be strong for them and my family. I am 50. So similar in age.
I have been wondering how you got on after your treatment.
I’m happy to hear that your pain is so much more manageable now.
I hold you and your family in my thoughts, may the pain continue to be controlled and your peace maintained with whatever your choices surrounding your care may be.
CM: thanks for sharing your thoughts as you go through this. I'll always remember your inspirational posts and for shedding light on what many of us will eventually deal with. I'm glad you tried Lu177 and it provided some relief. Very best to you and your family.
God bless you....I am Gleason 9. Psa down to 0.14 doing Lupron shots..just had my 2nd shot...tired....doc says since Gleason 9 it’s a wait for it to go to bones...any thing I can do to slow it down? Tks and I wish you the very best
If it has not metastasized then you should talk to your oncologist about a radical prostatectomy or pelvic radiation. Yes Gleason 9 tends to be more aggressive but every cancer is different. There are guys on here that have kept their Gleason 9 cancers under control for nearly 20 years with just ADT.
Thank you for getting back to us, CM. I’ve been increasingly worried about you since your last post. You’ve been through so much for someone so young. Thankfully, you’ve found some relief for the pain. Your calm acceptance of the next phase of life - whatever and wherever it may be - serves as a model of grace and strength to the community here. God bless.
Your post was hard to read, because God you are just too young. I’m not sure if you’re religious person but I Think God is giving you peace as now you are entering in a different journey . You will be in my prayers with your wife. I do hope she has a giant support system
Darn so young and so unfair. Your grace and humility under such supreme pressure is an inspiration to us all. God bless you and your family on whatever you choose in your next stepon this journey.
I have been following your journey through your heartfelt posts since my husband was diagnosed a few months ago. Your spirit to fight or to accept what the cancer has caused is remarkable and admirable. I am praying that you find more relief from pain and peace. Many people, from near and far, are sending love to you.
What would be the negatives of getting 1/2 doses of Lu-177??? Just get it more times or over a longer period. The positive might be fewer symptoms for you & a prolonging of life. We will all die, none escapes, we just want to prolong the living part as long as possible. Obviously, doses could be a 1/2, 2/3, 1/4 or whatever deemed best to provide treatment but minimize side effects. You are apparently sensitive to full doses ..... at least on the 1st dose. I am just "Blue-skying" it here but tailoring Lu-177 treatment to your specific situation might be helpful ..... or might not, I just do not know enough to know. It might be worth discussing. From what you are saying the Lu-177 appears to work the side effects are the problem.
You enhance our group and contribute to each of our individual lives, Cleodman. Thank you for sharing your experience in such a well thought out way; your comments are insightful and so very helpful! We are grateful that pain has abated and may your bone marrow work its way back to wellness.
Your posts have revealed your character. You are a fighter but also a realist. Good qualities to be modeled for all of us in this fight. Thank you for your helpful posts. God bless you and all of your loved ones.
Thank you for staying in touch with all of us. And documenting your journey.
It seems you have come such a very long way in the last 5 weeks or so. Things sound much better than your last previous post, especially insofar as the pain has abated and the Lu-177 was effective after a single treatment. But the calcium serum levels sound threatening. My husband became anorexic and so exhausted as a result of many difficult treatments (some that failed) in a short period of time-from late May through early Nov. of last year. But slowly, slowly he is regaining weight, strength and better mind-set. The future is unknown, but we just move forward as best we can.
It sounds as though you are tired and ready for any eventuality. But perhaps you will continue to heal. Time will tell.
In any instance, we are all rooting for you, as you know.
My heart sank this morning when I read your update, if it sinks any further it won't be there. I started to read your letter to my wife, but I had to stop, otherwise the mug of tea in front of me would have become very weak through my eyes leaking.
Your bravery is well beyond mine, I can empathise with your physical pain, and your wife's mental pain.
Your over view of your treatment and the future is a skill that you have due to your profession, you have an analytical brain and because of your medical knowledge you are able to see clearly what you want to do.
I couldn't , I can teach you how to plaster a wall, plumb your central heating, make something out of a piece of wood. But I couldn't be as noble as you are being now at this time.
I would cling onto the very last vestige of life in the hope that tomorrow I will see a new dawn, my wife, my dog. The kids even on video call, etc.
My wife and I have thought about you and your wife often, we want to hear more, we have been thinking and talking about you both today.
Very kind of you both. I’m not sure I am being noble but you are comforting saying so. I was very angry at myself as I knew I was slowly slipping away since August (which then became very rapid in November and December) but I failed to get my affairs in order. That may be my type A personality coming through so I am very grateful for this extra time I bought myself. I understand what you are saying and how you approach this disease is very personal (and it should be). It came from you and it affects everyone different. If adding sunrises and sunsets to your repertoire is what make you happy and fulfilled then that is what you need to do! On that note I wish you many many more.
Dear Brother , You can now see that you have the outpouring of love and prayers heading your way from us that also have this stinking disease . 🙏
Cleodman, thank you for the honest assessment of your treatment. We all pray for your quality of life to improve! Your courage and medical assessments are inspirational and will help many of us for our future plans.
Cleodman. I am struggling to find words that have not been written, either about your wife or yourself and your journey and how you have shared it. Within this community I have not seen such an out pouring of love, hope, care and prayers for any other poster. You both deserve this and I do believe that you will get the good luck you deserve mate in the many many months ahead. Graham
So you made me do it..... I just had to look up the word "cleod" which means a "scottish deerhound". You also opened my eyes on how to live with and fight this damn disease. You are a brave gentleman which all of us respect and admire. Please beat this malady that haunts all of us. We want you around to hear your tales about your relationship with your dear wife. PLEASE take care of your wife and yourself.....(and laugh)...
Welp buddy .... this just makes me shake my head in exasperation .... you’ve been such a champion warrior just to get to this crossroads and I think what gives me a case of the jaws most is your young age. So young to be this deep in PCa chit ... it’s just not right. Makes me just agonize for you. 50 other people have said it so eloquently, I don’t know how I could add to that .....but ... there are two things that kinda stand out that may or may not be worth saying. You may have heard about my buddy Bussman. He fought like a champion warrior too, fought for 22 years , enduring dozens of spinal surgeries and steel implants, plain agony, just to finally be told “ we got nothing else for you” and sent him home to home hospice to croak with his wife helping him. No more treatments ,tests , anything ... just the pain meds and psyc meds.
Bussman went more than three years in home hospice , puttering around the yard, very mobile enjoying his remaining life. more time to smell the daisies before he started to push them up. The point being that even if you choose hospice you might have more time than you expect. Humans are surprisingly durable .
Still ..... I hope you choose to hang around for a while sticking with your meds and treatments tho. When you describe laying on the couch or in bed, not helping around the house much ..... buddy you are describing my life to a “ T “ yayahahahaya... you can hang for three hours with friends ... 30 minutes would probably be more endurance than I have. I can’t walk the hall to the toilet and back without turning red faced, huffing and puffing out of breath , wheezing hard. You can go 3 hours probably because of your youth. I worry that I might need PT to keep my leg muscles working or that I might be wheelchair bound before long. I have flushes of mets breaking out on my right forearm that I’m continuously killing off with freeze treatments and now I’m starting to have to use inhalers because I’m starting to wheeze loudly all the time ( pco2 fine ) and the noise keeps me awake at night and drives my stressed out wife crazy. ( lung mets ? ) I’m sick most of the time, so much ..so long .. it seems like my everyday life now ( well, it is yayahahahaya) I have to struggle to put on my sweat pants, forget socks, I still manage to get my shoes on but it’s a struggle.... my wife wants to help me but I’m stubbornly resistive for now. You can see the agony in her face. Therze lots more .... I suspect my life is close to as miserable as it gets ....
BUT ..... you know what ? Screw all this crap and the PCa disease it rode in here on .... I’m not quitting ... I’m starting to like being screwed up and miserable yayahahahaya yayahahahaya ... I bought a three wheeled e-moped and I drag myself out to the garage and sit down on it and I’m free again ... I ride 15 miles on local hike and bike trails. I plan my rides to keep as close to toilets as possible because I have serious bowel issues . But I’m out sucking fresh air and sunshine ...smelling the roses ( perfect weather where I live ) ... I’m researching the cost of a handicap lift van rental ( about $110 per day ) with room for my porta potty and room to lie down. Soon as Covid is over ( if I’m still here ) , I’m going to the zoo ... hike and bike trails in Beautiful Monterey California , Morro Bay, San Francisco Conservatory and dozens more. I’m a charter member of the Monterey Bay aquarium ....
The point being , yea I’m screwed up , but there is still plenty of life to experience and enjoy ... my wife right by my side. If you choose to hang around a while longer , you too can find inventive ways to get out and suck in some fresh air too ( not sure how immobilized you are ) , you can’t be more exhausted or tired than me and I can drag my butt up and drive or e-trike. I’ll bet I could fish from a chair on the pier using my trike to pull a wagon of gear out there ... there are zillions of ways you could still enjoy some life too. You can learn to look past all this “ crap “ and get on with things more ... if old 75 year old beat up and trashed “ me “ can do it , I’ll bet you ....with all your youth , could too.
Anyway , those are my thoughts about your circumstances, your mileage may vary, but I hope you choose to go to the zoo and the coast as well big guy. Maybe I’ll meet you over there sometime.
I understand who’s you are feeling and certainly these treatments get old. My experience with pain is once I met with a palliative care specialist. My back compression was to a point I could barely walk or shower, plus daily nausea, loss of appetite, and feeling like. I started with low doses of morphine and we increased till pain went away. It failed after 4 months and I’ve been on 50mg fentanyl patches now for several months. Just not having pain has been huge. He also helped eliminate my nausea and has helped with appetite.
I just know this has been a battle and it’s hard to go on. But may be palliative care can give you relief. You are in my prayers!!
Reading these posts brought back to me my brother very brave final few months of life that finally came to end 13 months ago. He had had 4 Lu-177 treatments, but went downhill quickly some months after the 4th treatment. He had battle PCa for 20 years as a G9 patient. The reason I am posting now, is to bring to your attention the impact that a new experimental drug called Veyonda has had in two separate clinical trials. I arranged with the Sydney, Australia based company Noxopharm Ltd (ASX ticker code : ASX) for my brother to be given Veyonda after he had SBRT for pain relief, etc. See the DAART results. Sadly, his MO wouldn't sanction him having the drug
Veyonda was also used in the LUpin trial with Lu-177 based at St Vincent's Hospital in Sydney. About 50% Late stage PCa sufferers treated in the trial did very well.
The CEO of Noxopharm, Dr Graham Kelly, and a late stage PCa survivor himself, is very approachable via their web site.
My husband is in a similar phase. First LU 177 on January 11. Pain reduced some but still 100% immobile. He wants to give up quite often but then we get over a hump and he’s pleased that I persevered. I would like to know if there are any LU stories to be told where death was knocking at the door and then the LU brought you back with a decent quality of life... this may help you, cleodman, as well as us in the decision to continue the LU or not. Next treatment is scheduled for March 1st. We are in Israel getting treatment at Rambam in Haifa.
If he tolerating the Lu 177 and his bone marrow is holding up he may want to continue. I can’t get anymore Lu 177 unless my bone marrow recovers (RBC’s, platelets, and WBC’s). I’m sorry his pain is not better. This was a dramatic improvement for me but I also stopped Xgeva injections as a possible cause of the bone infarcts found on MRI of my lower back and pelvis.
I'm in your exact situation having had Lutetium a month ago and since then have had a few trips to Emergency. Starting radiation tomorrow for bone pain and using fentanyl patches. Constipation, appetite and fatigue is my life right now. Bedroom to lounge is my daily routine. Liver mets out of control make me look like I have a huge beer gut.Running out of tv programs and wondering what happens next ?
I think I'm in the same headspace as you which is hard to explain. After the last trip to emergency and talking to the palliative care people I know this is the end. They don't mix words and it's all very clinical. For some reason I've become focused on pain management etc and hoping my loved ones still lead as normal a life as possible. I'm relaxed and comfortable enough , I know when I'm beaten.
You may have already done this however there are radiation 223 clinical trials that uses a parp inhibitor. If lutetium fails for me that’s my next steps best of luck to you. Been fighting this for 13 years and won’t bend I needed this friggin cancer. But I understand how tired we can become of the fight. Hang in there, for you don’t know whether something that can extend life is just around the corner.
The combination of Ra-223 and PARP inhibitors is now being tested in phase I/II trials in men with CRPC and bone-predominant metastases [niraparib (Zejula, GSK) and olaparib] [ClinicalTrials.gov identifiers: NCT03076203 and NCT03317392, respectively].
Addios bone pain ! That is good .. but sorry for all of this brutal bs at 47 .. There is a point in which if the pain is too great and there is only suffering ,we will all then shuffle off to buffalo. You are loved at home . This is all that matters in this world . You are valiant . Please don’t blame yourself for getting this freakin disease. It surely is a unjust raw deal at your young age especially . I’m on your side .
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An update on Peter Mac and Lu-177
