University of Utah Huntsman Institute TAK-700 Clinical trial

Foam,

I though you were off drugs since you posted the end of the trial, however you meant to be the end of TAK 700. Accordingly, lupron should be still in effect and you should be in chemical castration. I wonder what the level of the testosterone is. Do you have a test result? This is important to verify your real status.
If its level is less than 30 ng/dL then this surge of the PSA signifies that the cancer is not dependent on the testosterone in circulation and that it might be now producing its own androgens for survival. This is not good and even chemo will not do much good.

Let's wait to see what Agarwal has in his sleeve to treat you next. Probably he is thinking on an immunotherapy which could be the reason for your genetic testing. Guys with certain identified genes did well in immunotherapy with Pembrolizumab and the trial is still going on. In fact there are several clinical trials listed in the National Cancer Institute site;

https://www.cancer.gov/about-cancer/treatment/clinical-trials/disease/prostate-cancer/treatment

These links can give you an idea about immunotherapy using monoclonal antibodies (MABs) like Pembrolizumab+

https://www.pcf.org/patient-resources/patient-navigation/prostate-cancer-clinical-trials/

https://www.emjreviews.com/urology/article/immunotherapy-in-prostate-cancer-recent-advances-and-future-directions/

I will wait for your next news.

Best,

VG

Foam,

Another update and another report that most of us are pleased to read. Thanks for continuing to narate your story.

I think that Agarwal is trying his best in dealing with a case like yours. I am not a doctor and I do not contest his practice, however, I think that he could be more expressive explaining the reason behind his choices. I wonder why he prefers chemo than an attack with radiation, in view of the findings along this three years of exams. I am not against chemo in systemic cases but when the metastases have been identified and are located at feasible places (your case) then spot radiation seems better than chemo as the later is more invasive. It will cover the whole body affecting those parts functioning properly at the moment. We have discussed this before and you did consult your radiologist who opposed to superficial types of therapies.

Another aspect that you should consider is the insurance coverage you got from your employer. I would think that it covers the traditional radiotherapy so that you will not need to worry about the "homeless" status if treated while in the toffee production. It is not surprise to me that Dr. A (a medical oncologist) can involve you in a chemo trial (free of charge) that may include Xofigo, which is his main job, but such can be accommodated later (if necessary) after radiotherapy, at the time when you become a "homeless guy".
You do not need to wait for a PSA of 5.0 to start your next step at Huntsman Institute if such does not include a continuing hormonal treatment. The ADT trial is over and the Chemo approach is a newer trial with specific requirements for inclusion of participants. Is it the best choice for you or for Dr. A?

After so many years on Lupron you do not reasoning as it should be. Lupron tricks the way we think and act. I recommend you to consult another doctor on the above subject. Surely you shouldn't give up with Huntsman Institute but just be curious again as you did three years ago. In fact, I believe that you should try stopping Lupron for a while. Get advice from a specialist.

How about doing some vacations from the drugs and visiting my country. I love toffees.

Best,

VGama

I am please for knowing that you are enjoying a period in quality living before restarting treatment. However, I do not understand why you say that your PSA of 3.0 is considered within the normal range when you are still taking Lupron (ADT). Either, ADT is highly ineffective in the treatment of your type of cancer or the level of the PSA is masked by the ADT effect and it should be much higher than the 3.0 described.

High Gleason rates of 5 are known to produce low levels of PSA serum or even zero of the serum. It is typical to see low levels in the PSA of aggressive cases of PCa but there are no standards to represent such a situation. I also think that in your case the bandit responded and it would respond well to ADT which leads to think that the PSA should be lower than 3.0 ng/ml if the testosterone were at castration levels. Have you done a T test?

I hope this period with quality of life is extended for several years. Best wishes.

VG

Foamhand,

Thanks for sharing the details. Your T is well below chemical castration levels 3 ng/dL Lupron is working well preventing the testis from producing testosterone. The constant increase of the PSA signifies that the cancer is not dependent on your testosterone anymore. It may be producing its own stuff from cholesterol or feeding on dihydrotestosterone (a ten times more powerful androgen). In other words, your status is refractory and I wonder if Xtandi will manage to control the bandit during a long period of time. Probably you need to add other meds.

Famous PCa medical oncologists like Dr. Myers used drugs like Crestor (statins) to control the cholesterol, or Leukine to boost the immune system, or Metformin to control the sugar involved in the production of androgens, or other drugs like Climera, Calcitriol Celebrex, Aspirin, Fosamax, Dostinex, etc. These are very much reported here by patients in their second line ADT protocol.

Thought I like the way your physicians have controlled your situation, I do not like doctors that establish the period that patients can live. I call them Ducks in white gowns. Why should you have only ...   ... 36 months left to live?

That is disgusting what they told you. After the second line ADT you can have radiation plus chemo which will force you to live and enjoy life for many more years.

Best wishes,

VGama

It seems to me that you are now focus in treating the PSA alone. Xtandi is an antiandrogen working similarly to Casodex that aims cells' AR (androgen receptors). It is more refined than Casodex as it addresses intratumoral activity. I believe that your cancer is now manufacturing its own androgens for survival  and Xtandi will try to prevent the cancer from absorbing the androgens. The drug works well for a period of time. I hope that Dr. A recommends you radiation treatment as soon as it losses effectiveness. Radiation kills the cancer, Xtandi is palliative.

I hope you get good results and reach remission again.

Best wishes,

VG 

Your post made me reread our exchanged comments along the 4 years of your story. It seems to me that you got stucked to Agawat and to what he could offer. I wonder if another doctor would follow the same sequential.

Your refractory case was evident at the end of the first trial. I just cannot understand why didn't Agawart referred you to a radiologist.

These immunotherapies you describe above are again palliative. They may alleviate the burden of the cancer but will not eliminate it all. Radium 223 has been used to tackle the bandit in bone but it is linked to nasty side effects, probably worse than chemo. Anemic cases are common.

I am sorry to hear about the trouble in moving homes. I wish you luck in your next phase of treatment.

Best

VG

Good idea to start a new thread and keeping us up-to-date on novel approaches. 

Most importantly, we all wish you the very best