My husband was dx 8/2016. He has had doxitaxel, xtandi, zytiga, Radium 223 ,docetaxel ( second time) and cabazitaxel. His PSA continues to increase and today after his second cabazitaxel it remains at 95. We are so concerned since there has not been any treatment that lowered his PSA. He has bone mets throughout the skeleton. He has skull mets which has been treated with radiation . His last scans did not show any significant uptake except for two small skull mets. We were hoping the cabazitaxel would take reduce the mets. His adrenal gland is also showing cancer. We just don't know what to do next. Should we try Keytruda or LU-177 or another clinical trial. He is very tired but at this time no real pain and the only pain medication he needs to take is aleve. We are thankful for that.
rising PSA on cabazitaxel ! - Advanced Prostate...
rising PSA on cabazitaxel !
Have any of the tumors been biopsied? That will tell you if Keytruda is likely to be effective and if it has PSMA that would allow Lu-177-PSMA-617 to be effective.
Yes , there was a nodule above his kidney and we also had genetic testing. He did mention psma and I was going to bring it up next Tuesday. We were just so disappointed the PSA has not come down,
Did they do an immunohistochemical (IHC) exam on it?
I have never heard of this. Exactly what is this
Thank you
It is targeted staining of the biopsied tissue. Ask your oncologist.
Thank you so much. Ill ask him Tuesday. At MSK
He should consider to enter in the clinical trial of Ac 225 PSMA at Cornell University:
clinicaltrials.gov/ct2/show...
Ac 225 may be more effective than Lu 177 PSMA if there are extensive bone metastases. He could also consider the clinical trials with Lu 177 PSMA:
clinicaltrials.gov/ct2/resu...
tango65,
Correct me if I am wrong, but from what I have read so far, Ac-225 creates a SEVERE problem for the salivary glands. Is this correct ?? Is it possible to enjoy a decent quality of life after taking Ac-225 ??
Many thanks in advance.
It could create a problem with the salivary glands. It depends on how the treatment is done and the total dose of Ac 225 PSMA. They are doing combo therapy with Ac 225 PSMA and Lu 177 PSMA to reduce the possibility of damaging the salivary glands. Ac 225 PSMA seems to be more effective than Lu 177 PSMA if there is diffuse infiltration of the bone marrow. They could do a treatment with Ac 225 PSMA and then proceed with Lu 177 PSMA. If one wants to have treatment in the USA the only chance to use Ac 225 is to participate in the clinical trial at Cornell University The choices of treatment combination of Ac 225 and Lu 177 PSMA are more numerous if one can go to Europe , Australia or South Africa.
Thank you, tango65. South Africa DOES NOT DO a combination therapy.
And, after my dismal experience with them (not answering questions related to costs, efficacy of treatment, side effects, etc, etc), I have dropped SA from my choices for treatment altogether. As of now, I only want to do a combination therapy of Lu-177 + Ac-225. And, possibly in Germany.
Thanks again, tango65. All the very best to you.
i heard that Bad Berka in Germany is doing the Ac 225/Lu 177 treatment. Best of luck on this journey.
Thank you very much, tango65.
It appears that even a combined therapy of Lu-177 and Ac-225 while reducing SG toxicity, still has a high degree of toxicity. The team at Bad Berka is working on reducing the toxicity further.
If, I have to postpone treatment by about 6 months to a year, to enable them to come up with something less toxic, yet effective, what would you suggest I take now to survive till then ?? Enzalutamide ?? Cabazitaxel ??
Foundation One reports have ruled out immunotherapy in my case. And, Abiraterone and Docetaxel have failed with me.
Thank you, once again, tango65, for your time and concern.
Also, another VERY IMPORTANT THING !!!
At the most advanced level at Bad Berka, the combined therapy of Lu-177 + Ac-225 can extend life (mean figures, of course) by 33 weeks and progression free survival by 21 weeks. If that is all I am going to get, I will try to enjoy life till I pass away. I am a REALIST. Cheers, tango65.
Thank you very much indeed.
I also strongly suggest people on this board read Atul Gawande's "Being Mortal".
It shows you when and how to accept the inevitability of death and to enjoy ones last days (not tied to machines).
Do you know what his Alkaline Phosphatase is currently and if it has risen recently?
You seemed to be saying that the last imaging didn't show any progression in bone mets, is that the case? If so, that's a good sign despite the rising PSA. It's better of course if the mets are reduced, but often all we do is keep them from progressing. As far as I know, you would need a PSMA pet scan to determine the PSMA expression for the 2 treatments discussed (ACT-225 and LU-177) You might be able to get on a trial. There is an ACT-225 going on in South Africa, not sure they are still taking patients, but the price is very reasonable. Both treatments are offered in Germany, but very expensive. Good luck and please keep us posted.
Hi I just saw you asked joanna48 about her husband's Alkaline Phosphatase results and if you don't mind could you please let me know what it means if they rise very quickly? My husband's have risen to 1177. his PSA is 30. He takes Xtandi and has pain.
Alkaline Phosphatase is a marker for bone turnover, most often associated with increase of bone metasases. Is his pain increasing? Has he done any imaging recently to see if there is radiographic progression? You can sometimes get a bump up when you start treatment or change treatments. What is his history with Alkaline Phosphatase levels?
Thanks for your reply, he had a
bone scintigraphy and scan a few months ago and it showed it had spread to his ribs compared to a year ago. In january his ALP was 184 his PSA was 15.39. In March his ALP was 516 PSA 37.59 and in April 1177 despite his psa going down to 31.94, he had taken Xtandi already for a month, Firmagon was no longer working. Can ALP go up even if PSA is decreasing?
Yes the ALP can go up when the PSA is going down although that wouldn't be typical. But one exception is when initially stating treatment or going to new treatment. My ALP (Alkaline Phosphatase) jumped up when I started Zytiga and I know someone that had a significant rise when first starting treatment at diagnosis. His ALP initially rose when he started ADT Lupron injections although his PSA was dropping sharply. Soon after, his ALP also started to drop.
Your husband's ALP could start dropping, Sounds like he just started Xtandi, is that correct? What is his doctor saying about it?
Thanks so much, I hope a decrease it will happen to my husband. The doctor says it's normal with bone met, but he doesn't say much more, and yes he has just started with Xtandi. Soon he'll have another test, will post results.
Hoping the best for him. It is a good sign that his PSA is coming down. I think if you look at the percentage of initial success for Xtandi, it's very high.
Thank you for answering so quickly. His Alp are currently 75. There has been no progression since Jan 2019
That's good. Also his ALP is great, well within range. It's about the same as mine. I think genetic testing on a tissue sample is a good idea. They can also look for Neuroendocrine type cells. Depending on what is found, it could direct your treatment. How is he doing with chemo?
Good no side effects just tired. But he’s better than when he’s on docataxel
At this point, don't be too concerned about the PSA number. What is more important is the PSA velocity, the doubling time....You are running out of options for "standard treatment"..Getting into a clinical trial with a promising new treatment like LU-177 or BAT might be your best bet but be warned, there are lots of roadblocks and hoops to jump through to be accepted into many of these trials..Enrollment is not automatic..There is an oral chemo drug, Cyclophosphamide, An older drug that is seldom used today, but it worked well for me when Cabotaxel failed..Might be worth a try.. I'm a ten year, Gleason 9 survivor but I too am running out of options my PSA almost 1000.....
Very interesting...low alp...lower than mine at PSA of <0.03......yet his bone Mets smolder on. My thoughts are this may be a marrow stem PCa attacking variant...ie JAk mutant as someone mentioned on another thread. Understanding the original cell type ‘omas’ is complicated but integral when inferring prognostic treatment outcomes...here’s a comprehensive study of PCa orogeny. I feel Its worth combing through the complexities in understanding why these diseases are so different. It’s enlightening to me.
Dear joann48,
Sorry to hear this, at least he has no real pain. My husband takes Xtandi now, his PSA is 30 and he has bone mets, before that he had monthly shots of Firmagon, but it stopped working. I just wondered did your husband have more pain before? My husband has a lot of pain especially his back and rib cage. Did your husband tolerate Xtandi well? Thanks and all my positive thought go to you.
WB joann48,
All I can say is what I've said before. I am being treated for a lung melanoma (and Pca) with Keytruda and it's working. Pca is different but I heard that it is working in some cases. Keep on keeping on... Regards to your Husband.
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 05/19/2019 1:46 PM DST
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