My miracle drug didn’t work, so I’m left with finding a trial that l fit into that is close by. My Dr recommend a few trials but they are all out of state. Many in states being hit hard with COVID-19. Also my wife is self employed and it would mess that up. Half want me to go, the other half say nothing. It’s been ten years now this June and this is the first time that I haven’t been taking anything. Here is the rub, do I go to drug trials with side affects and hope or just enjoy my time I have left.
It’s that same old game of buying time. Is the price worth it?
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GoEZ
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It was the first chemo ever used for prostate cancer. It fell into disuse when docetaxel came along. Oncologists are giving it another look as a palliative drug.
There are other drugs ..Go for trials and hope . You’ve got more life to live .why do the ten yrs then give in ? . I understand that each of us will reach a point of not wanting to suffer anymore. Then it’s time to go . Your not there yet I don’t believe .. keep hope alive ... My life and finances have been thrashed by pc . I’m five years in only . What you say and do here matters to others . We can say fu@@ everybody but why? Your ten years gives me hope of another five . Caving into apc sends a bad message to those fighting for their lives right now . At the same time . Who am I to tell another man what to do ... I say fight hard for precious life and then GoEZ... good luck moving forward .
In January I broke my rib because I sneezed too hard. Since then I have broken 2 more ribs. I’m no expert but even I could tell how grossly different my last bone scan was from my previous scan. And since March I have been losing the ability to walk from the damage to my spine. I cannot lay on my back long enough to complete my radiation treatments. I know I talk about fighting the good fight but these last few months have been brutal. I’m overwhelmed and this last appointment has sent me to the mat. I really don’t know how much more bad news I can handle.
Thank you for giving me some more treatments to ask about and a little hope.
Wtf? These type of rib story gets to me. I just wonder when things will start breaking on me??? There is nothing simple or easy about what you’re going through . My prayers go to you to get a break . I’m not giving you directions on treatments. Its your choice. I had two years to pc hell initially. I know how it feels to have its talons sunk in your neck .Or in my case , sunk into my urology .. I hope that you can break its grip .Im sorry , I know it’s all torture right now for you . I’m floating along , La De da floating in limbo with side effects waiting for the worm to turn its ugly head onto me again? When I hear that you can t walk it kills all joy for me ., we are all at different stages of pc woe. I pray that you improve and somehow get better? 😩😩🙏
It was like someone flipped a switch and everything went bad. I’ve been spoiled for awhile. I have been getting better than expected from all the pills and treatments, Now nothing is working for me. I’m sure something will come along.
It’s a freakin nightmare for you brother. This APC is a long winded Greedy bastard . I think you’ll find another move to make . Its very hard not to say f it all and just go jump off a cliff. I had the thought .. Hold on to your reasons .. Like the song says “ Im going to ride my horse til I can’t ride no more . “ You don’t want to ever give Up hope on your own chances. Keep the faith and hang in there 💪🙏
Have you tried Zytiga? Xtandi? Dutasteride? Casodex? BAT? Radiation?
There are so many options and from the data it appears to me that PCa mutates and is heterogenous. So various therapies might help.
I did ADT (using estrogen patches and zytiga - T went to undetectable levels), and then high T. Sort of a BAT but longer time frames for zero T and hi T. Cabergoline to squelch Prolactin. An AI to block aromatase and therefore lower estrogen. Dutasteride and Finasteride to take DHT down (DHT is 5-20x more active for PCa than testosterone). Zytiga to prevent PCa cells from making their own T. I feel fantastic on this milleu and my PSA is 0.06. Gleason 9, T3b/c, bladder wall, seminal vesicles, one lymph node. If and when it stops working I might take DHT back up, or go on BAT, or try different drugs. I'm also looking into radiation. Lifetime risk of other cancers is 0.2%. Major side effects with latest improvements are supposely rather unlikely.
Whatever you decide, may God be with you and all the luck in the world.
I agree with Whimpy. A new trial or other treatment is worth the try..if it were me. ..but I am not you so..same advice as above... ..hang in there , you ARE a strong warrior...keep the faith
I've just read the thread here, and your bone breakages mean your mets in bones must be extensive. I guess your Psa is also high, and having Zofigo ( Ra223 ) may kill many Pca cells in bone mets but bones will remain brittle, because radium has replaced calcium, and repaired bone is not as strong as original healthy bone.
Have you thought about Lu177, available in Germany? I had 4 shots last year, Psa went from 25 to 0.32 a year later. But Psa is now rising again so I want more Lu177 to stop bone mets from getting big enough to let bones break easily. A pea sized bone met in a femur won't weaken bone much unless it becomes 3cm dia and has begun to invade the outer layers of very dense bone that give most of a bone's strength.
You have a difficult decision to make.
I got Lu177 easily here in Australia in Sydney, only 4 hours away by train from where I live here, but Lu177 in USA is still not approved, maybe because it would upset so many existing status quo mainstream treatments that do not work as well.
I am cycling 200km a week. I'm pain free.
If I hadn't had Lu177, I'd probably be in palliative care now. Docs might hold my Pca back for a few more years, and not with any chemo, which failed for me. We don't get to decide how long we have, its luck, available remedies, and Nature, and when the time comes, you'll know. I've watched friends pass away, a sister, a mother and a father, and mortality is certain, and there's a time when some treatment just won't bring back a good QOL.
There would be many who get depressed when they see they can't go on, but there may be drugs that can help that and the pain, but I hope you get some care from others.
Patrick, May I ask where in Germany you went for the Lu177? How month have you had your PC now? What is your Gleason? I ask because my husband is Gleason 10, age 56 and the PC is spreading rapidly. We just started chemo but I need to look for the next option (s). Thank you for you info/help! 🤗🙏
I live in Canberra, 300km southwest of Sydney in Australia where Lu177 is available if a man fails with chemo, Docetaxel.
I have just been talking to the doctor giving me Lu177 who has has put together a good plan for me because I have some recurring Pca in my bones and some new mets in my bones. Latest PsMa scan also showed many bone mets had completely cleared up and bone had repaired itself.
I will be getting FDG scan asap + another blood test to see trend of white cells, and the fight continues and my oncologist and Lu177 radiation doc are right on the ball.
I had a good response to Lu177 which held down Pca progress for over a year, but Pca grows back up because Lu177 cannot kill all Pca in bones and it seems that very small bone mets when I began Lu177 in 2018 were not much affected, but they are now growing bigger now and very PsMa avid so Lu177 should work again.
I am nowhere near finished with my fight against my Pca.
I was Gleason 9 at diagnosis in 2009, at age 62 but Psa was a low 6, and PG was inoperable, so probably much of what is seen in PsMa scans now is the spread from PG before initial treatment of ADT + EBRT. My Pca is relatively slow growing so doctors have had time to formulate a plan and implement it.
I may have to return to having more chemo with Cabazataxel and some RT to some bone areas.
There is no Pca in my lymph nodes or organs which could be seen in PsMa scans, but but FDG scan may see Pca that will not respond to Lu177.
I have now got a series of weekly things to do in order to have further treatments in coming few months.
If you and your husband are in USA, then Germany is closest source of Lu177, but international flights may be difficult because of C19 virus.
I only have to go 300km for Lu177, and by slow train, funded by Govt for pensioners.
I should have had a full examination of PG when Psa was < 3.0 about 5 years before 2009 and I bet I had Pca, but Gleason would have been 5 and an RP could have been done, probably before spread of Pca began. The ADT worked for 6 years, and held down the Pca at PG and mets were not seen anywhere in CT scans before 2016.
But in 2016, PsMa Ga68 scans became available here in Oz and we saw the first 2 small mets in lymph nodes about 2mm dia.
But yearly PsMa scans revealed more and more mets, and now my Pca is considered a bone disease, but FDG scan may reveal Pca mets that cannot be seen by PsMa scan, and won't be killed by Lu177. I should get FDG next week, and docs need to know my full condition.
Doc does not recommend Xofigo, ie, Ra223.
Lu177 here is now about usd $6,600 per dose, and first 4 infusions cost me about usd $27,000 plus costs of scans and travel. I am not insured and our Medicare does not cover Lu177. But beam RT at local hospital and many other things like Xtandi, ADT are virtually free under Medicare.
I had Docetaxel chemo here which was free, and after 4 shots more bone mets were seen in scans and Psa went from 12 to 50, so I quit chemo and went to Lu177, that gave me about a year and Psa has just now gone over 15. I may get another good year where Pca retreats to low levels before it grows back up again. I can still cycle 200km a week without any pain but that could change any time.
When I had my 3rd shot of Lu177 last year there were two guys there from USA, and perhaps the cost was cheaper than Germany, so it made sense to come to Australia. The flight time is much longer, but some men are not concerned about flight time so long as they are treated well, and from what I have read our treatment is good as anywhere, and much very good research is being done here.
My Lu177 doc said that Pca can develop resistance to Lu177, and this is typical Pca reaction to anything that is used to kill it, which is why its so hard to get remission.
I have to pay up to stay alive, and many here just can't pay what is not funded by Medicare, so they can miss out on treatment, and they won't live as long.
I will have to try to arrange a time for FDG scan this afternoon, and get a blood test, but then I can go for a bike ride.
Hello again Patrick, You might remember me & i had two LU-177 which sent my psa down to 1 but now its back again to my surprise & they want to start me on Firmagon. I am dissapointed with LU-177 & it seems nothing will get rid of this.
Now have nodes in lower abdomen & pelvis all positive.
Maybe your Pca is growing so fast without ADT that slow action of Lu177 is not able to work very well.
Having only 2 shots of Lu177 does not do much. My Psa was 25 when I began Lu177 in Nov 2018, and after 2 shots it hardly moved down, but it didn't race up.
4 shots had Psa reduced to 1.6, not a bad outcome, and helped by Xtandi after 3rd shot. Psa went to 0.32 a year after beginning Lu177, but over last 7 months its risen to 15, so I'll get more Lu177 and investigate if I have mets that cannot be seen in PsMa scan by having an FDG scan. Even though Xtandi is probably not working now it probably is boosting my PsMa expression so Lu177 should work well for only 2 more Lu177 shots. This is what my expert doc told me this morning, so I will just go ahead with whatever he is saying. He wants me to keep cycling.
Mets which can't be seen in PsMa scan but are seen in FDG may be killed by more chemo with Cabazataxel or PARP inhibitors may work well - at least work until they all stop working, and ppl forget nearly all Pca treatments merely extend life, and almost no treatments give remission.
If you are exposed to enough Lu177 to kill all Pca cells, it could be very dangerous to bone marrow and other things so side effects of damage to healthy tissue are so bad that benefit to QOL is nil, or negative, and IMHO, you don't want to have a gung ho doc who gives you a big lot of any therapy which ends up still not giving remission, but leaving you in a mess.
Fact is, my Pca is only 15, and in 2 months could be 45, but if I have at least one x Lu177 shot before then it may limit rise, and after a second shot I expect it to go down a lot.
Research at Peter Mac hospital in Melbourne shows this is typical for men who get an initial response to Lu177 like me, and this nuclide may give me another 4 years of life, and maybe a 3rd series of shots of Lu177will be needed.
I like living, and I can pay a fair bit to live as long as docs have something to extend my life. I don't expect remission of miracles because these are so extremely rare.
I'm going to a small ride soon, maybe get a blood test later and arrange FDG scan if the prescriptions arrive in time by email.
I have seen men who have been in far worse condition than I am but who found latest treatments brought them back from the brink to live a few good years more. Its all we can do.
PSA has gone from 57 to 99 then last week 247. Those reading were taken monthly. COVID-19 has added another nightmarish layer to the problem. Some of the studies she was looking into are in COVID-19 hotspots. I’m not a rich man so there is that limit. Thanks
RE: "Is the price worth it?" Such an easy question to ask, but so often not so easy to answer at various times during the course of our advanced disease, under individual circumstances, and within our own unique set of values.
Atul Gawande's book and the related PBS Frontline documentary "Being Mortal, Medicine and What Matters in the End" also discuss such things.
Your previous posts show how hard you have fought this disease with as many treatments as were available. Certainly, the posts here provide good information about other available treatments still open to you, some of which you have tried.
What you have written shows your internal conflict that we all have about the value of treatment, versus quality of life for ourselves and our family and friends. I think those are fair considerations. As I have said before in other posts, I believe this is a very personal choice based on each patient's circumstances.
If you feel trying a new treatment/trial is the way to go, then do your homework to be sure you agree it is right for you. Get a second opinion from another PCa expert MO, if you feel it would help. Have a serious discussion with that information in hand with your wife and whomever else you want to include to look at whether the benefits in extension and quality of life you expect from treatment, outweigh related discomfort, financial costs and the mental and emotional stress placed on you and your loved ones.
I cannot imagine how hard this decision is for you, but I can say that for me personally, setting a direction that I think is best and I believe in, gives me a sense of calm and the fortitude to move forward. For me, either decision is better than none at all.
May you and your family make the best decision that provides the most time together, joy and wonderful memories.
When I wrote my post it was hours after getting the bad news. Watching my family deal with my new reality has been one of the hardest thing I have had to endure. You are right that I need to make some decisions. I don’t have any information on my new reality. I will get that information in the next two weeks. As for the discussions, they have started.
It has been humbling to get encouragement from guys in the same boat as me or who are worse off. Thank you it keeps me grounded.
I’m feeling better now. It was just a few months of bad news and feeling really bad. I was watching my family absorb the news and it got overwhelming for me. I call this a dip in my pity pool. This time was the worse I have felt since getting the news 10 years ago. I’ve learned how to deal with the side effects of medicines and treatments but the emotional aspect sometimes gets the better of me. We have lived with this for a little bit now and are getting our feet under us again. The body blows are coming faster now. I will fight till I can’t, to the good fight.
“ pity pool” are you kidding me, you’re looking down the barrel of the Gun. No pity brother but much empathy . I know how that feels We all do brother. You’re a strong human being mentally to have endured what you already have..10 years wow! I am praying for a miracle for GoEZ ! You deserve a break today . If we could just meet the pc in a field with a machete . Then it could be a fair fight . But this mofo don’t fight fair . It hides , it lurks. We will all submit in the end . None will beat this disease . It’s had eons to morph into what it is . Our freakin nemesis . Love those around us . Peace , hang in there !😎🌵
Your cancer may have morphed to small cell carcinoma. I have same problem. Have you done genetic testing for mutations. There are many trials using Keytruda and the various -paribs depending on specific mutations. There are still options so don’t give up. Only you can determine if the price is worth it but as long as you are feeling reasonably well I would consider options. Blessings for you and your journey.
Just this week. I will find out the results at my next dr visit in 2 weeks.
Waiting is a mofo . I got some scans a week or so ago . No results yet . I take it as good news. If it was bad they’d get in touch quickly I assume .? You will know more then 🙏
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