I had a teleconference with Dr Beers today, he suggested discontinuing docetaxal based on a consistent increase in PSA 2.7 to 4.4 to 9.3 3 sessions increase. I am not a candidate for a parp inhibitor according to the gene specialist. Dr beers thinks another form of chemo or xofigo may not be very ineffective or short lived results. Needless to say it's all quite concerning, I am still very active and pain free with 4 known mets, all skeletal experiencing low red blood count one day real bad as well as neuropathic discomfort in my feet I increased gabapentin dose to 600mg 3 xs per day. I really feel like my options are limited and some men could potentially get long term benefits the phase 1 Hpn 424-1001. Does anyone have insight into clinical trials or any possible suggestions. My thoughts are to proceed with immuotherapy. I will study and learn as much as possible before finalizing my decision.
It was suggested to proceed with a ha... - Advanced Prostate...
It was suggested to proceed with a harpoon trial at Ohsu led by Dr beers. Every week until until it no longer works,
Dr Beer is certainly well trained and well respected, so I would personally seriously consider his suggested treatment. However, I will leave it to others in the forum to tell you something about it. I am unfamiliar.
If I were in your position, I would get a second opinion at UCSF Department of Urology urology.ucsf.edu/patient-ca... They have access to ore resources and are rated #3 by US News in Urology. Dr. Peter Carroll is the big name in urology there but I have heard good things about Dr. Eric Small, who is focused on PCa treatment (including immunotherapy). This is only one place, but it's not too far away.
This is a big decision and I would want to either know that Dr Beer's option is best or that I have other options. I have been a patient at OHSU and they have some very sharp prostate cancer oncologists but when options are being reduced, a second opinion cannot hurt and Dr. Beer should understand.
I think it's important to understand what the reality of enrolling in a Phase 1 immunotherapy study means to your quality of life during treatment. Many can be very debilitating. If you have done you homework about this trial with your family and know the risks and potential side effects..... and feel that this is the right path, go for it. I am only suggesting you make an informed decision based on your desired quality of life, probability of meaningful life extension with this trial and knowing all your options. clinicaltrials.gov/ct2/show...
You will know when you have reached the answer that makes sense to you. May you find the path to the best treatment with the best outcome for you!
Keep us posted. We are waiting for your good news!
Yes I will weigh my options carefully, although time is of the essence in order to wash out chemo I would not be excepted in the trial for 28 days minimum, with a rapid PSA rising . I still have many question, He did indicate this is the best possibility for positive results. Thanks for your input.
I agree that stopping chemo sounds right. You have to do what you believe is right for you. Take care.
👍
I’m no doctor or expert but I say “ use the harpoon on it “ Believe in Beer and that this trial can save your life . Go for it Costa. !
I like your attitude , I will weigh my options this coming weekend and decide. But I believe I am hitching my wagon to a harpoon. Thankyou.
Harpoons away ! It’s you, or it .Im on your side . F the APC!
Is it this trial?
clinicaltrials.gov/ct2/show...
There are several similar trials going on, also I think CAR-T is promising. There is a list at the bottom of this article:
prostatecancer.news/2019/12...
Yes that is the correct study. I took your advise upon referring Dr beers, I am very satisfied with him so far. I will review you links. Thankyou.
Sounds like a great doctor to me. Take care .
Thanks for the CAR-T trials list--my oncologist thinks it is the most promising area of research.
Mine as well. Sterling endorsements from my team. I have always felt it shows the most promise.
Not to be taken lightly, though. Dr. Dorff told me that one of the first patients to get it died. However they believe that patient was so far gone, he would have died anyway. But runaway immune reactions are a risk.
I hope being 59 and healthy prevents that outcome.
They have strict guidelines for liver and kidney function.
Prior to the study, or during as well. Strict in what respect.
Prior to letting you in.
Yes CR, Beers is a good one. Participating in such a trial makes you a warrior on the front line of medical treatment for APC and gives great meaning and value to your choice especially when options are limited. Thank you for your service fellow warrior. Harpoons away!
I like it I am referred to as a freak by some friends who see me endure a great deal of treatments as we all do, but how I seemingly take It in stride. Little do they all know, behind the scenes are not as pretty A warrior freak sounds nice. LOL
The Harpoon trial was also recommended to me by Dr Drake at Columbia. Unfortunately I live in Virginia. And due to the nature of the study, with weekly visits and overnight hospitalizations, commuting from Virginia would be impossible, and I would temporarily have to relocate to the New York area for the duration of the study. This would be a terrible inconvenience and greatly impact my quality of life, and I have wrestled with this decision for a few weeks now. The other option for me is Cabazitaxel or BAT, either of which would be less disruptive to my life.
If you live close to OHSU, I would enter the trial as I think immunotherapy is the way of the future. If not, then you must consider QOL issues, as I am doing now.
Thankyou I have decided to proceed, best of fortunes and health to you my friend, let me know how your story goes.
This article link on the interim results of the HPN424 Phase I "Harpoon" Trial before expanding it to more participants may be of some use to you as you make your decision as to the risks/benefits of entering the Trial, yourself. Good Luck, whatever you decide!
globenewswire.com/news-rele...
Very helpful reading the link has led to more questions. It that's good when making big decisions like this. Thankyou.
Man the harpoons! Good luck Costa ! 🏋🏻♂️
Well wimpy there has been a change in plans orchestrated by my new doc. My PSA came back down to 7.3 from 9.4 and he suggested milk the chemo, if your showing downward PSA numbers . I have # 5 chemo session coming up on the 16th, and am very intrested to see if the numbers continue to plunge. Apc is a hard mistress to gage, I am ready and willing if chemo doesnt show benefits to turn on the other tap to clinical if necessary, but for now I guess I shouldn't look a gift horse in the mouth. Pretty strange ey
It’s good ,I believe .. APC is one fickle bitch . Follow your dr . Keep the harpoon on ice for now. You have options . That’s very good . Let the Psa drop and be well Costa . You’re a smart guy and you’ll do what’s best for you . You’re on t of this shot . Stay on its back brother . We will ride this gift horse to the end . You get in the clear zone with me and we will see how long we can skate on the APC ice OK? Ive had four years skating on the thin ice with APC. Good luck on #5 .. You’ve got this ... hang tuff !💪
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