It has been long since I asked a question regarding the situation of my Father.
Following is his medical history:
In March 2019 he (62 years old and diabetic) was diagnosed with Advanced Prostate Cancer with multiple meds in bones and spine. PSA at that time was more than 100 ( do not have the exact number). His Gleason score was 9. He went through radical prostatectomy and 10 Chemo (Docetaxel) cycles with 150mg Bicalutamide with which PSA came down to 16 in December 2019.
After that, he was put on 150mg of Bicalutamide in Feb 2020 his PSA was 6.6. In April 2020 his PSA was 6.67. On 4th June PSA was 9.9. His consultant suggested to wait for 3 weeks and do another PSA test on 24th of June. Today his results came out and things are not looking good. His PSA is now 11.4. In my view, it is rising very fast.
Could anyone suggest what would be the next course of action?
Are we already looking at Lu177 or Ar255 nuclear therapy? Is there a treatment other than nuclear therapy?
I would really appreciate your help and guidance.
Stay Safe.
Thanks and Regards
Shahbaz
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Shahbazahmedazmi
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The Bicalutamide may be "feeding" his cancer. Happened to me. Once I discontinued Bicalutamide, my PSA dropped and stabilized for 20 months. It took one month for my PSA to drop after discontinuing Bicalutamide. Next stop? Probably Zytiga. Good luck.
Thank you Fran2020. It's motivating to know that stopping Becaludamite could possibly give my father good 20 months. It's also encouraging to know that we still got time before we look into Lu177.
He should, first of all, switch from bicalutamide to a GnRH agonist/antagont (like Lupron). The cancer learns how to feed on bicalutamide, so it may be making his situation worse. Lupron is also a more powerful medicine.
Xofigo would be a good choice now, especially combined with Provenge. After that, he should be taking one of the more powerful hormonal therapies - either Zytiga or Xtandi.
Thank you very much not just for me but all the things you do for this community. You are a force. Thank you very much.
Stopping Bicalutamide immediately. We will into what his consultant have to say. It's comforting to know we still have some more weapons before we go nuclear on the beast.
I was on bicalutamide until it stopped working for me. My Onco gave me Zytiga combined with Prednisone daily and since mine spread to my spine, so also taking Xgeva shots monthly. So far doing well with zytiga and steroid, been on it for approx 9 months. Talk to your MO. Good luck to your dad and take care.
In my Australia, if chemo fails then next step can be Lu177 if a PsMa scan shows it would work. But nothing works forever, and I failed chemo, because Psa went up 4 times from 12 to 50 over 3 months, with 5 cycles, so I began 4 shots of Lu177 with Psa 25 and it went down to 0.32 with enzalutamide added to Lu177 from just after 3rd Lu177 shot. But now Psa is back up to 15, but recent PsMa scan shows all soft tissue mets are gone, and I have mainly only bone mets. Scan looks like a picture of a dalamation dog with many spots of Pca so I probably will have more Lu177.
I am also booked in for an FDG PET scan that should show if I have mets which will not respond to Lu177, and for these a different approach is needed using maybe Cabazataxel and maybe PARP inhibitors when a genetic examination is done soon. All this is available here in Australia. It all costs a lot because not all is covered by our Medicare.
But all the latest treatments doctors give now have a trend to work only for a limited time of say 12 months and then must be repeated of something else is tried.
Your father could be having ADT injections if he is not already having ADT.
I found ADT without anything else held down all Pca growth for about 6 years. It does not cure, but it slows down Pca growth. When this alone fails, then Cosadex or bicalutamide is added which can give maybe another 6 months Pca suppression. I had Zytiga added to ADT after Cosadex failed, and had a further 8 months suppression of Pca. This was all before chemo, which didn't work.
Your father's oncologist should be very familiar with all these things and explain it all.
The doc who gave me Lu177 was considering Ac225, ie Actinium225, which works maybe better on some patients but has more severe side effects so it seems better to have say 2 x Lu177 shots for me and then see what happens, because I have already had 4 shots Lu177 last year and too many may ruin bone marrow and my immune system, so nobody can be gung ho and just use too much of anything.
I have seen Cosadex ( bicalutamide ) make Psa go high in one friend who had a poor response to all things his doctors tried, including ADT that worked for only 3 months.
My doctor said Zofigo, ( Radium223 ) was not so good as touted to be, and it does not target all bone met sites, and has no effect on soft tissue mets. It replaces calcium where there is calcium being cycled at bone Pca lesions. Standard treatment is 6 shots, may cost usd $50,000, and it has reputation for making bones brittle leading to likely bone breaks.
But such things also depend on your father's age and overall health.
Provenge is Immune Therapy ( IT ) and has reputation for only giving 4 months of Pca suppression. It involves removing blood and treating white cells to make them kill Pca, then re-injecting the altered white cells back into patient. The white cells go to work immediately and try to kill Pca cells, but if the white cells don't replicate themselves to make more white cells to continue killing Pca, then the treatment only lasts a short time. But one man emailed me to say Provenge worked very well for him and kept Psa extremely low for 9 years, which meant he first received this IT when Provenge had just been approved all those years ago. Not all ppl get a good result with any treatment that is considered. But I have lasted well with good QOL for 10.5 years since diagnosis at 62 with inoperable Gleason 9, and at 73, I am still able to cycle 200km a week. This seems all due to following mainstream medical practices and adding some nuclear treatment over last 18 months. It can be a complete nightmare to navigate through what doctors are offering. So I learned a lot by reading scholarly articles online about Pca, and also from hanging out to read what others are saying here. I have been able to say what I wanted to docs, and they often agreed with me.
Thank you Patrick Turner for taking out time and providing a very informative guidance.
Now I am prepared to have a look on the next prescription from our MO tomorrow.
It's amazing that you cycle for around 200 km in a week..For strength to you. Stay Safe.
Regards
Shahbaz
We experienced similar results, PSA rose to 42. Our doctor switched us to Zytiga and prednisone. Not sure what our results from this change will be, but that is path we’re on now. Good luck!
Hi Three-tz, It's unfortunate that you guys go through the same but at the same time a bit comforting to me to know that we are not alone, as this beast plays out differently for different people.
I hope Zytiga with prednisone will work out for you guys. Could you please let me know about progress on Zytiga?
I sure will let you know, I didn’t mention that we still get Lupron injections every three months also. This is definitely a beast, but we CAN tame it - prayers and best wishes.
Thank you HopingForTheBest1 for your guidance. I am also thinking about doing a genetic test. We will ask our MO for it. I do not think there is any harm in just doing the test. It might turn very helpful. Tomorrow we will ask about it with our MO.
I posted about a month ago about my experience with radioligand therapy. I had 3 treatments in Bangkok and my PSA dropped from 9.8 to 0.14. I am in total remission with no mets visible. I didn't go through any of the normal courses of hormones, radiation, etc. I got my prognosis and flew to Bangkok. I could have gone to NZ, India, or Germany for the treatment but I was already going to Vietnam for a cycling trip so we decided when we finished our trip we would stay in Bangkok for 3 months. One treatment each month and my oncologist here was amazed and I am truly grateful that I chose this course of action.
Thank you Bangkok for such a motivating reply. I also hope that our MO suggests radioligand therapy or at least give us an option of having it. I would also like to go for it but the decision ball is in my father's hand. Let us see how things will turn out tomorrow. I will update here once we have a clear picture.
Radioligand therapy is an innovative approach to treating certain types of cancer. It delivers radiation to cancer cells in a targeted and precise way, with a minimal effect on healthy cells,1 which allows for greater efficiency.
What are radioligands?
A radioligand is made of two parts: a ligand, which can find cancer cells that have a particular surface molecule, and a radioisotope, which emits therapeutic radiation to kill these cells. The radioligand can target cells anywhere in the body.
The radioligand can be customised for diagnostic (imaging) or therapeutic (treatment) purposes by changing the type of radioisotope. Combining the diagnostic and treatment processes is known as theranostics.1 2 Alternatively, changing the ligand can allow targeting of different types of cancer or even other diseases.
About radioligand therapy
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The evolution of radioligand therapy
Targeted radiation has existed for decades. Radioiodine was first used to treat overactive thyroid glands and subsequently thyroid cancer in the 1940s.18-21 Because the thyroid absorbs significantly more iodine than any other organ, radioiodine is taken directly to the thyroid and delivers radiation to kill cancerous cells. Radioiodine remains central to thyroid cancer treatment today.
This principle of targeted radiation has evolved from organ-level precision to cellular-level precision in line with scientific advances. Radioligands bind to certain types of cancer cells wherever they are located in the body, so they can be used for targeted diagnosis and treatment.
The only properly targeted radiation I know about is done using theranostic treatment where a ligand chemical makes Lu177 or Ac225 gather at cancer tumors so alpha or beta particles bombard all tissues within 2mm distance, and thus damaging tumor cells so badly they die. Its a very high amount of radiation but confined mainly to tumors, and I had Lu177 last year, which reduced much of my Pca cells. No doctors have ever mentioned "radioligand" radiation to me for Pca.
"radioiodine" really means a radioactive isotope of iodine. Non radioactive iodine in small amounts is important for health, and increasing its level for good health can cause trouble, and I'd guess the thyroid would uptake radioactive iodine and maybe kill tumors in thyroid. Victims of atomic bombs absorbed quite a few radioactive elements produced by bomb explosion fall out including radioactive radium, ceasium, iodine, and maybe a pile of others, in amounts which were lethal.
So what was the ligand needed to make these radioactive elements go to specific places in our bodies?
With Lu177, there is a manufactured ligand chemical that has been found to not affect out health, but its able to adhere to Lu177 to surface of Pca cells where it has what is called PsMa expression on tumor cell surfaces. The Lutetium is a rare earth metal, and cooked in a nuclear reactor to make it slightly radioactive with a short half life of maybe a week. Then its combined with chlorine to make Lutetium chloride, kinda like sodium is combined with chlorine to make sodium chloride, NaCl, or plain table salt, which out body needs for health. We don't need LuCl, but Lu17 dissolves in water like NaCl, and the Lu atoms retain radioactivity, and molecules of LuCl can be anchored to surface of Pca molecules using the special PsMa ligand chemical invented by Novartis. I don't have a clue exactly what the full extent of the chemistry behind PsMa ligand is, but the definitions of what really happens probably would take ten screen fulls of more correct scientific terminology to explain, so what you say about "radioligand" radiation remains a Miss Terry, OK. But since nobody has ever mentioned radioligand radiation for Pca anywhere I have looked, then maybe it was an old therapy than nobody uses in western countries, although it may still be used in Thailand, where somebody said they got a cure. Well, really?
Some old uses of radioactive substances to kill cancer and some old applications of X-ray radiation beams in the past had the most terrible side effects, because getting the dose levels correct was so difficult, and the gear used to deliver the RT was so primitive. Remember clock and watch dials that remained bright in darkness? Well the girls in factories applied the radioactive paint onto the dials of clocks, watches, and scientific dials and other dials in submarines and planes and they used a small brush, and to keep it moist to get paint to adhere, the girls dipped the brush in their mouth, and then many died horribly from radiation poisoning.
Radioactivity was used to make images in a shop to show if a pair of shoes fitted properly, and for hair removal for beauty treatments. None of this was regulated or controlled. Everyone was ignorant.
If it was true that "radioligand"radiation had a high cure rate for Pca, we'd all be able to access it in western countries and not need to go to Thailand.
I would not know what I was really getting in Thailand.
Dearie Me John, I don't really want to be known to warm other men's bums.
Am I spot on? I have no clue, and when I tell some ppl I cycle 200km a week, they say I am definitely INSANE. Probably masochistic.
And, one thing I can't do, is keep IT up, its only function is now a drain pipe.
Some of us age woefully, because we refuse to reject some habits we developed in our youth, which ended for me about 40 years ago. Its because the older we get, the better we woz, and this can be measured scientifically by measuring average bicycle speed. Then as youth becomes a very distant memory, and diseases come to visit without being invited, we can become caricatures of whatever we once were, and we have a vague idea of just what that was.
In my shed, I am trying to draw some nice accurate data curves for a KT120, which is a Russian made beam tetrode, so that the world has a better set of data curves for this tube than the Russians managed to draw. Of course the Russians make good vacuum tubes, they like to cosy up to a furnace in a cold factory and make nice electronic glassware. But when they draw data curves, they just are not as good as those which were done in 1950s in UK and USA where no expense was spared to make test gear that were as big as a fridge, packed with analog test gear and with a curve plotting machine driven by vacuum tubes. Only the very few super intelligent guys in these factories were allowed to draw data curves. But I am managing to make a tube measuring circuit in a very heavy box about the size of a typical immigrant's suitcase of 1950s. I don't drink anywhere near as much vodka as the old Russians who are now about 90, and who are still trying to draw curves with awful equipment that hardly works, while partially drunk.
I will achieve a couple of useful snippets of data for those who still like vacuum tubes and who refuse to acknowledge that transistors and digital stuff was ever invented. Of course, its possible that all the soldering I have done over last 27 years has caused my Pca. Docs would ask me if I ever smoked, and I am honest, and admit I got up to 10 a day by age 34, but forced to quit when a German GF Veronica told me to stop smoking because when we went to bed I stank of tobacco smoke. I then quit, to keep getting laid. I promised to never smoke again, and Veronika said "Ah, you men, you never keep your promises..." But I never smoked again. Veronika could not stay on the porch, and she left me to once again travel around the world to spend her savings, and live well by cosying up to a nice other man and paying her rent that way.
I never saw her again.
What is most likely to cause Pca? Cigarette smoke? Soldering flux fumes ? having too much sex? riding a bicycle? drinking too much?
The jury is still still out about all this.
Tomorrow I get an FDG scan to see what Pca I do have that will not respond to more Lu177.
Once the doctors and I know, a better plan can be worked out to get me to last a bit longer. The doctors incomes depend on making ppl last longer. Having ppl die is a major economic hazard they have to deal with, and the the supply of old baby boomers won't last forever, and succeeding generations are less numerous, and live more carefully.
Well Patrick, just to let you know my bum is back to a normal cold. I do hope your FDG scan went well today. I've told you this before but when it comes to tubes you are the expert. You're an interesting guy who tells it like it is.... Besides Kaliber, you would be the only other person I would find interesting if we were stranded on a deserted island. (with food and matches of course)..... Keep on cycling....
I wood knot mind the desert island environment providing we both went through a time machine to being 30 again, so the beach on island is not littered with dead fish, dead birds, and tonnes of plastic garbage. And to make life interesting, island needs to be at least 500 hectare size, have freshwater creek, and some lush forest with no horrible creatures that could kill us, which bite an arm off this week and the next arm next week. Then we would need Nicole and Jennifer to warm unmentionable parts of our bodies, but be a good help to hunting and gathering in an environmentally sustainable manner. There's a long list of other things I like to be included in the container they'd send with us to the island.
A solar system to generate electricity to listen to recordings of Beethoven wood be essential. All this wood be just fabulous, with having to face the reality of Pca, and all the scans and expense.
Today's FDG scan went OK, cost me usd $420, took 3 hours.
I got home, felt ungree, so had a sandwich and then cycled 55km and then felt whole lot better. Now for more tube curve drawing just as sun goes down.
A friend is visiting at 7pm, armed with a bottle of red, so, not a bad day I am having.
I will learn on Friday what the PET FDG scan shows.
Try always to stay well, and for goodness sake, don't go insane,
Patrick I'm not an authority on Radio Ligand. John has already googled you more than I will ever understand. I'm not from a science background. I'm a retired log home builder. I do not know the acronyms or the surgical lexicons. I had two weeks of hormones before jumping in with both feet. A friend who also had metastasized stage 4 prostate cancer had 2 treatments in Germany and is now in remission. I was already flying to Hanoi via Bangkok so it was convenient to have my 1st Gallium in Bangkok. After our cycling trip in Vietnam we flew back to Bangkok and started my first of three treatments. I went from a PSA of 9.8 (my scan showed I was lit up like a Christmas tree) to 0.14 in three treatments one month apart. We got a great little apartment in the Ari district and stayed the 3 months for my 3 treatments. We ran 5k almost every day exploring Bangkok (two day rest after treatment imposed by my wife). I had no side effects (dry mouth or eyes) no nausea except one cycle ride in 37 degrees three hours after my Gallium (my wife accused me of sucking her into my reality) stupid of me but hope you get my point - no side effects. This type of treatment put a strain on us -both culturally and on our savings account (throw in a world epidemic for good measure) but we have no regrets. This treatment and the experience of living in a military state (population of 69 million with only 60 fatalities) during a world epidemic has only enhanced our relationship going forward...into our collective uncertain futures.
Just what you got in Thailand seems a bit of a mystery, but but it does seem like Lu177, because you mentioned getting a dry mouth, which is a side effect of Lu177. That will probably get better in time.
I guess if you did get Lu177, it would be cheaper than in Germany or here in Australia or in UK etc. There is probably an enterprising doctor in Bangkok who can get hold of the necessary radioactive Lu177; it has a short half life of a week, so for an infusion each month, Lu177 must be shipped in from a country with a suitable nuclear industry that includes production of the nuclear medicines. Here there is no supply of Lu177 being made at our one and only reactor during C19 crisis, so it has to come from Germany, but there is no extra cost.
I have PET FDG tomorrow and docs and I will see if I have Pca which cannot be killed with Lu177. My Pca began in about 2004, so its old cancer, and such cancer is renowned for mutating as it ages, so I don't have a clue how I will be treated until docs make up their minds what is best.
I had a wife who stayed only 18 months after 1976 with me and she also hated being sucked into my reality, and of course some women can handle problems in others, and some cannot, and I was not surprised she left. She married me when she was too young at 21. I was 28, and had grown tired of running around, so I settled, but I didn't demand she had kids; that was up to her, and she didn't want kids. She didn't like her own reality either. I could not please all the women all the time, just a few, for part of the time.
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