University of Utah Huntsman Institute TAK-700 Clinical trial
edited October 2019 #82Is Agarwal thinking on Mabs?
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;
These links can give you an idea about immunotherapy using monoclonal antibodies (MABs) like Pembrolizumab+
I will wait for your next news.
PSA swinging up.
Hi all, well had my January visit at Huntsman and PSA was still 2.2 but we are testing monthly now as it seems I am beginning the resistance phase. February PSA was 2.6. Dr. A said the next step would be after PSA => 5.0. For now just getting Lupron and Zometa infusions every 3 mos. We discussed the next step which would start with scans and biopsies to see how much the bandit is spreading. He said most likely it would be chemo which I could get here in my home town without having to go to Huntsman. As of my scans last July, bandit is just in the bones and no organ involvment yet.
Dr.A said the chemo works very well and newer therapies are not as hard on a person as they used to be. We would do the chemo (and possibly Xofigo / radium 223 for bone mets) as long as it works. The next clinical trial for me would be something "novel" but no details yet what it might be.
I also learned that since I have already used TAK-700 (Orteronel), the more agressive inhibitors like Zytiga and Xtandi are no longer going to be as effective, and I might not benefit from them so they probably will not be used.
I am still feeling quite good, but due to lack of testosterone, things like arthritis and muscle stiffness are getting a little worse. I am still working but having to slow down and get help with my workload as I can't seem to quite get all things done by myself that I used to in an 8 hr day. I just turned 59, and my employer is completely understanding and helpful. They told me if I ever need help, just ask for it. My health is still not bad enough for me to qualify for disability, but when resistant / recurrent / refractory disease is confirmed, I automatically qualify for disability. I would still be able to work part time 2-3 days a week, so I can stay off the streets and not become homeless.
I know I'm not getting off this planet alive but hopefully I have many more trips around the sun left.
You touched me
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.
feeling good still.
I believe Dr A is not in a hurry for another treatment until PSA of 5.0 because I am feeling so good right now that any invasive therapy would infringe on quality of life. My mets are still quite small and giving me no pain so radiotherapy is not needed yet. I go in next Monday & Tuesday (July 1 & 2, 2020) for yearly CT and bone scans. My May PSA went up from 2.5 to a 3.0 but still in the so called normal range. I believe I will be meeting with Dr. A on Tuesday and will ask some questions as to his reasoning and thinking for the future. I'll post after I return from my visit.
edited June 2020 #86Quality of life when on vacations from treatment
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.
June 2020 yearly scans
VG, here are my Monday T results:
Component Your Value Standard Range Flag Testos, Adult Male ng/dL 300 - 890 ng/dL L REFERENCE INTERVAL: Testosterone, Adult Male
Access complete set of age- and/or gender-specific
reference intervals for this test in the ARUP Laboratory
Test Directory (aruplab.com).
Sex Hormone Binding Globulin 16 nmol/L 11 - 80 nmol/L REFERENCE INTERVAL: Sex Hormone Binding Globulin
Access complete set of age- and/or gender-specific
reference intervals for this test in the ARUP Laboratory
Test Directory (aruplab.com).
Testos, Free Calculation <1 pg/mL 47 - 244 pg/mL L
I'm Back from Huntsman with some good news. Yearly CT scans and bone scans showed no definite new spots and only slight worsening of the spot on my right femur and 7th and 8th posterior ribs. Dr A said my progression seems to be very subtle and it's difficult to distinguish between arthritic spots and new metastasis because what was there last year in places doesn't show this year. I do have 2 pelvic lymph nodes that have started to grow but are still below normal size. They were swollen before the TAK trial but shrunk significantly. Unfortunately my PSA has gone from 3.0 to 3.3 . He has no new trials for me at this time, however he has decided to try to get me approved for the drug Xtandi. ( The cost is extreme so he is trying for help for me financially thru the hospital ) He said he chose Xtandi because Zytiga would not be as effective after being on the TAK 700 for 3 years. I am still getting Lupron with the Xtandi. He said this should slow down progression and delay the need for chemo. He told me that 4 years ago when I came to him I had 36 months left to live and that I responded very well to the Tak 700 which is why I am still doing quite good.
I'm still working and enjoying life. I am one of the lucky ones that the COVID-19 pandemic did not affect me.
Ducks in white gowns
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.
My Dr. Follows only NCI,NCCN,NIH protocals.
Well, I am now taking XTANDI / Enzalutamide, 160mg daily. I have been able to find funding for it thank god as it is VERY expensive. First blood tests August 14th to see how it works. It's method of action is somewhat different than Zytiga which was rendered less effective for me from the TAK 700 clinical trial.
I asked about alternative treatments like Dr. Meyers used above and was informed that DR.A only follows the above protocols. He will not endorse anything outside of the NCI, NCCN, NIH realm. However his team did not say no in trying the new CBD products on the market which I use when I can. They make me very drowsy. I use them for sleep mainly, or off work pain. Moderate pain relief.
Will report blood work results in Aug.
edited August 2020 #90Xtandi, palliative approach
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.
Well, refractory now...
Just had my Oct 27 visit to Huntsman for more CT / Bone scans. I have been on XTANDI / Lupron and now Eligard as there is a Lupron shortage worldwide. CT / Bone scans show mixed results. PSA is now 6.1, some lymph nodes have shrunk while others have grown. Slight growth in prostate tumor itself towards bladder but not operable as yet. Some bone spots have slight increases while some declared benign. Dr. A says he has another clinical trial for me but has yet to decide whether it will be the XL092 monoclonal antibody Phase I trial or Radium-223 plus Nivolumab immunotherapy phase II trial. I return to Huntsman in January to decide. Would start sooner but Landlord is selling house where I live and we need to move before I can afford travelling for treatment. There may be re-imbursement for travel & lodging. Otherwise, Dr A said chemo is the next option and he doesn't like it because he sees people give up on Chemo after several sessions. he'd rather see me on a trial. This one is sponsored by one of Dr. A's colleagues. I will report back in January. Good Luck All.0
edited November 2020 #92Good luck to you too
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.
Thank you, Foamhandfoamhand said:
Well, refractory now...
Just had my Oct 27 visit to Huntsman for more CT / Bone scans. I have been on XTANDI / Lupron and now Eligard as there is a Lupron shortage worldwide. CT / Bone scans show mixed results. PSA is now 6.1, some lymph nodes have shrunk while others have grown. Slight growth in prostate tumor itself towards bladder but not operable as yet. Some bone spots have slight increases while some declared benign. Dr. A says he has another clinical trial for me but has yet to decide whether it will be the XL092 monoclonal antibody Phase I trial or Radium-223 plus Nivolumab immunotherapy phase II trial. I return to Huntsman in January to decide. Would start sooner but Landlord is selling house where I live and we need to move before I can afford travelling for treatment. There may be re-imbursement for travel & lodging. Otherwise, Dr A said chemo is the next option and he doesn't like it because he sees people give up on Chemo after several sessions. he'd rather see me on a trial. This one is sponsored by one of Dr. A's colleagues. I will report back in January. Good Luck All.
Although I have not commented before, I have followed your journey since the beginning. Along with wishing you the very best of luck in attacking this disease, I want to thank you for sharing your journey. Your steadfast spirit is inspiring, and the information about your case is invaluable in evaluating our own situations. Many thanks.
Thank You VG...
I was told in the beginning by a local oncologist and Dr. A that my treatment was going to be pallative as the cancer was already outside the prostate with metastasis to the bones / pelvic lymph nodes, and I was basically incurable but very treatable. I asked several times about radiation and they said they only use it to alleviate pain in advanced cancer as the cancer is circulating within my entire system and they could never be sure of getting it all with either radiation or chemo. Once it is in the bloodstream it hides in many places in my system and there is no telling where it all is. So there it is. Gleason 9 agressive Pca. I'm lucky to have lived this long. We just keep beating it back for as long as we can.0
New Clinical Trial / Starting new Thread.
Well, after getting a second opinion locally, we've decided that Dr. Agarwal still has the best options and ideas for treatment to avoid chemotherapy at this time. The details are yet to be worked out as to when I start, but it will be after the first of the year. The trial is called Rad2Nivo and combines Radium - 223 (Xofigo) with Nivolumab (Opdivo). It can work for up to 2 years ideally. After that who knows what might be available. Even my local oncologist said that after that, if nothing else, we can fight for 5-10 more years of life with Chemo and radiation if nothing better comes available. So I will be closing out my reporting on this thread as it is getting quite long and start a "chapter 2" University of Utah Huntsman Rad2Nivo Trial thread. That way the new events will be easier to find. Until then I wish all of you success in your own personal battles with this life / time bandit.0
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