I'm being told to go to Hospice by Dr Eugene Kwon (Mayo Clinic). However, I do not feel like dying just yet.
Can someone recommend something. Looking for a doctor in the US or overseas at this point.
Thank you.
Hospice or an Aggressive Oncologist - Advanced Prostate...
Hospice or an Aggressive Oncologist
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skateguy
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There's nothing in your profile.
I just published my profile/cancer history.
Thanks. You haven't yet had any radiopharmaceuticals (Xofigo or Pluvicto) - is there a reason (e.g., poor blood work)? Have any of your metastases been biopsied?
I was going to do the six sessions of Xofigo, but was told by my oncologist that due the extensive metastasis, it would be a waste of time. I had a bone biopsied in 2011 that was done to confirm prostate cancer, as I recall. No other biopsies since then.
You can insist on Xofigo if your bloodwork is OK, possibly paired with Provenge. Your other options are clinical trials, especially one of the CAR-T or BiTE trials.
You can ask for a biopsy of a metastasis for histology, IHC, and genomics. It may provide clues as to which clinical trials would be most appropriate.
As the cancer mutates over time a current biopsy could be helpful as TA suggested.Also the Dr. in Omaha that Grumpy's Wife suggested might be good for the biopsy, and if no actionable mutations, then for his second opinion on Xofigo, and for his own recommendations and expertise at recommending trials. Although really if you are reaching out to other Dr.(s) and I would there are several recommended here. Just start a new post asking for help to find a new Dr. with a short recap of your current situation.
I guess Im just saying that all of what TA suggested above makes sense to me including the Bite/CAR-T trials. Its interesting that Dr. Kwon seems to not have his finger on the trigger in getting guys in trials.
I don't know. I am just throwing that all out for you.
I was surprised on how quickly Dr. Kwon gave up on me. I have a consultation today with Dr Morgantaler, recommended by Nalakrats, who does a modified BAT treatment.
What is happening with your PC.?
Hi Skateguy, I see you have been posting for 6 years, but your Bio is empty. If you click on your icon/picture, maybe give a quick timeline since diagnosis. Guys like Tall Allen, and Tango65 can give you their thoughts. Dr Kwon is well regarded by many. Things must be very serious, but what exactly is happening in the last few months?
Man, I hope you can find a direction to turn things around. I’m not ready to die yet either. We feel your emotion. Best of luck Brother for good direction soon.
Mike
I just published my profile/cancer history.
Skateguy, I just read your new/updated Bio. Man, you are in a tough place. Standard of Care (SOC) has given you an extension of life. From my standpoint, with only my own research these past 22 months, your only shot is a human trial. It may require some travel, but as you said, you are not ready to say good bye. I saw one Trial for Advanced Metastatic PCa, that was Enzalutamide with Niclosamide. Withe the belief that Niclosimide will reactivate Enzalutamide. I saw this on clinicaltrials.gov use those key names in search. Kwon is known as the “Great Kwon” for good reasons, so this is not me 2nd guessing. Some guys here have had success with the “Mab” drugs at late stages. In particular Pembroluzimab. Usually for DNA repair Genes. Like BRCA 1/2, or ATM. But try plugging that into Human Trials website. You have nothing to lose at this point. May you find peace in these final chapters of life here on earth. All my best to you and yours, Mike
1. Did Dr. Eugene Kwon (Mayo clinic) come to the idea to prescribe you Xtandi?
2. Can you ask for a liquid biopsy?
3. Can you ask for a PSMA PET scan?
I wish you all the best. István Hoffmann
The world may be filled with physicians who have problems sensitively expressing prognoses. But it also contains facilities where compassion overflows. I was a hospice bedside volunteer for 8 years. What I consistently saw was that people came to hospice very late in their disease progression, despite their physician's early recommendation.
Hospice is often thought of as a place to die, rather than a nurturing choice where someone has time and support to make sense of their life, thank people for what they contributed and also protect them when asking others for forgiveness.
Yes, your oncologist may be overly aggressive, possibly also overestimating your cancer's ability to take to your life. Or he may even be incompetent. Yes, seek another opinion, but don't view hospice as something negative.
While my oncologist and I have controlled my prostate cancer for almost 20 years, I know that the odds are not in my favor for seeing my granddaughter reach adulthood. When I feel that my battle is nearing its end, I will welcome hospice and hope it can do for me what I saw it do for other men with prostate cancer.
Who is your doctor? PS, I just published my profile/cancer history.
Need as much information as possible to offer suggestions. That said ask dr about Nubeqa.
OK, thanks. But it is also finding a doctor to prescribe it.
Hospice can be helpful, not necessarily just for dying...but enhance current care, quality of life.... not even a permanent decision. But, if are fine without it, you're self sufficient, what is your doctor even taking about. Can't trust doctors fully.
I'm looking to avoid Hospice. Once in Hospice you can not seek any curative/life prolonging treatments. Once it is time I will embrace Hospice.
Hi Skateguy. Very sorry to hear of your situation. Understandable to reach for any options that might be out there.
My old urologist (retired) told me once that when you are out to SOC options to be very careful about jumping on supposed new or little known treatments. Many are just after your money or could even be harmful. People in our condition become vulnerable.
Not to say dont try, just be cautious brother
Good luck
Great advice. Thank you.
"I am very sorry to hear this. In the US, palliative care and hospice care often occur within the same medical department but have differing goals/actions. They are not the same thing. Here, if someone is receiving hospice care, he must sign an agreement that indicates that life-saving treatments will not be continued at that point and the focus becomes comfort. If he is receiving palliative care, then professionals work to help him live a better quality with the side effects of treatment while the patient at the same time is receiving chemotherapy or immunotherapy or other efforts to cure the cancer. That seems a bit off topic for your question, but my thinking is this: if he is already on hospice care, he may not be able to seek a curative treatment unless he discontinues his hospice agreement. Best wishes for you all in understanding how best to help him." I received this information about hospice and palliative care. Maybe it is helpful for you.
Thank you, but I'm still hopeful. I'll fight this until the end.
Just visited a hospice.... terrible. I agree now, avoid at all cost. It is for giving up, I'm convinced after seeing what I saw. They just barely keep you alive, no true recovery care. I'd rather be thrown in the woods.
I was told that I have been through too many treatments to qualify for a trail. But I have looked in the past and ill do a search again. Thank you.
I have used a couple of services found on here that scoured clinical trials for my husband. He has a 22 year history of treatments and was basically told the same thing you were—over treated so disqualified. Also has Parkinson’s which adds to difficulty. He is at hospice’s doorstep now. In a way I look forward to the extra help but know there is no treatment while receiving hospice. If some tempting treatment came along, he would exit hospice if he was fit.
I am not a doctor but Pluvicto might be available to you. It’s curious that Dr Kwon wouldn’t have discussed it as Mayo has it. Is there some reason against Pluvicto and did you discuss it with Dr Kwon?
My PSMA scan was negative. Thank you.
No thank you for sharing that important information as I did not read it in your history.
We think highly of Dr Luke Nordquist in Omaha. He is also a pharmacist and used some unconventional ideas on my husband. You might look at his website for the trials available. He had many trials and his office was easily the best organized and efficiently run we ever encountered. IT was nothing like the herded cattle feeling at Mayo. It made me almost want to move to Omaha. No trials fit my husband last summer but he did refer us to one closer to home.
Profile updated. Thank you for the doctors name. I will definitely contact them. Thank you so much.
From your current liquid biopsy your oncologist may be able to recommend further treatment or even clinical trials.
Liquid biopsy of what? I haven't heard of that term, so I'm not familiar with it.
You can ask your oncologist? Otherwise you can search the internet. They take your blood sample. Very easy. I also don't know much but the oncologist wants me to pay for that liquid biopsy as it could help them with my future treatment. I know that your oncologist is also very familiar with that test. Just ask him about it, or change doctor if you can't communicate with each other.
Thank you 
The easiest for you would be to try Nubequa if you could get it somehow. Maybe it will work. Worth trying. Maybe you will be lucky. Ask your oncologist to try Nubequa.
As you had lot of chemotherapy since using Xtandi and Zytiga and Prednisone, maybe you could try one of them if you can't get Nubequa. The other crazy idea from me is to try Xtandi and Zytiga with Prednisone in a same time. You can't lose anything. And do the liquid biopsy. Any oncologist should be able to help you with all of this. It is simple. Just try.
Good morning, if I was in your situation I would insist on a blood biopsy to determine if you have any mutations. If you have a high tumor mutational burden or certain individual mutations you may be a candidate for Keytruda. Keytruda worked wonders for my brother for eight months. There are several men on here who had very good long lasting results with it. Also, there may be clinical trials that would fit your situation. My brother went through foundation one. Insurance paid for it. Best of luck to you. If you are not ready to give up then keep fighting!
I have done genetic testing a few times and each time, no mutations were found. Thank you for you response.
My husband had his 5th Guardant Genetic test last month and this one showed High Tumor Burden for the 1st time and that adds a new option for him after Pluvicto. The 1st 4 showed nothing. Our Dr said he is learning that it can change and needs to be continued to be tested, once is not enough.
If hospice was recommended to me and I was out of treatment options, I would make the most of my time and energy. Catch up with friends and family, see a movie, go to the races or go on a fishing charter, what ever wags my tail. Like the line from the Shawshank redemption, get busy living or get busy dying. DD 😎
I'm doing both plus looking for solution. I just can't give up w/o a fight.
Skateguy I hope that you have someone helping you with your fight. Not to brag but my husband would not be fighting this without my help. Hopefully you are more capable then he is.
I feel like I'm on my own. That's fine, as I am the one interested in fighting this until the end. Your husband is lucky to have you.
I watched a web seminar live streamed from PCRI.org. That's Prostate Cancer Research Institute where they talked to a urologist from Las Vegas who name escapes me. I'm pretty sure the last name started with "Vogel". He thinks outside of the box. They pretty good about reaching out to people with serious issues. But I know Dr. Kwon is usually part of their seminar.
Thank you. That’s exactly what I’m looking for.
I found his full name. Dr. Nicholas Vogelzang. Here is a link to the 2020 PCRI.org Webinar. I got the year wrong, I thought it was 2021. This guy is in Las Vegas from what I know.
A clinical trial at a leading research hospital might be right for you. You may have to travel at your own expense. Besides BiTE and CAR-T there are anti-trop2 drugs being developed for multiple cancer types. I am on one of the latter trials and I am thrilled with the response thus far.Best wishes.
That is great news tallguy2 - wondering what your trial is called? It sounds like a good one. Skateguy it might be well worth looking into this trial too. Best of luck to you both.
There is a doctor in southern Florida that does cutting edge immunology treatments. Several guys on this site had great success with him. I think his name was four letters, like Onid out something similar to that. Immunity seems like what i would do if eligible. Sometimes immunology kills people but in some cases it cures them.
Dr Gary Onik. Thank you for reminding me. garyonikmd.com/immunotherapy/
YES, please give Dr. Onik a call if only to see if he is able to help. When my wife and I saw him in 2015 he was not yet into the full immunotherapy protocol and as it was my immuno by him was totally experimental as a 1st time used procedure for an individual in my situation and it has been ADVANCED FAR BEYOND MY TREATMENT.
GOOD LUCK and keep us advised if you wish to do so.
I already sent a summary of my situation, same as my profile, via e-mail. I will call Monday. Thank you
Good deal. 👍👍
Gary called me once and since I didn't answer he left a message "Hi John, guess you're out riding ..... " and I was so I called him back later, he is a VERY CARING INDIVIDUAL.
If you talk with him you could mention that his "SW FL 72yo bicycling patient *John* just got hit again by another WILD HOG while out on a 100 mile ride and he's incapacitated for at least 8 weeks with a fracture leg. First time hit in April 2020 I had 2 cracked ribs, punctured lung a cracked scapula and other minor stuff BUT WAS BACK RIDING in 2 weeks. This time really sucks eggs. Maybe 3rd time will be the charm and I'll get some FREE BACON!!! 😀
AGAIN 👍👍
Good luck to you and I hope recover quickly. I’m addicted to inline skating. I’m in a wheelchair now but hope to skate again. Gary sounds like a great individual. I look forward to meeting/ talking to him. Thank you for your insight
Inline skating I can only dream about. First broken bone for me was at age 6. Walking across lawn to front door with the *OLD STYLE KEY SKATES* on, tripped-fell-broke arm above wrist.
Was from that point on known as being the FAMILY KLUTZ, in a loving way of course.
BTW, our first meet/consultation with Gary was on a SUNDAY AFTERNOON-EVENING. Drove the 3+ hours over with a 3 day notice after he called and said to come over ASAP. Drove over and we saw him and was extremely impressed, wife got a HUGE HUG from him as we left and drove home. Every time we have met since then for treatment - to discuss scan results, the FIRST THING is wife must have a HUG. COOL GUY. Hope you have a positive experience.
I remember those metal skates that went over your shoes when I was a kid. I did break a bone in my left wrist while skating in Miami at night in 2/2015. Needless to say, that was the last time I skated at night. I hope my experience with Gary is good, but I’m in a worse position. I’m basically looking for the Hail Mary pass in the forth quarter with seconds to play. I would like to fight this disease up until the end. Thank you for the well wishes.
Gary has had Hail Mary passes completed, so go long with eyes and arms open and hoping you're skating backwards soon.
Just an update status: So far I haven’t been able to talk to Dr Onik. I sent an email to him through his website on Sunday and left a voicemail each week day. I hope he is on vacation and everything is ok with him. I’m hoping to hear from him early next week.
I have obtained a *contact link* if you were unable to do so.
I’m in contact with him now. Scheduling a PET scan. Thanks for following up.
skateguy wrote --- " ... Scheduling a PET scan.... "
Good luck 👍👍
I recently had a PSMA PYLARIFY Scan and fell asleep after the injection during the 1 hour wait time. Had a great video on the tv monitor about Alaskan Wildlife. 😀
You're welcome skate. One hockey player to another.
Thank you so much. Hope is a wonderful thing.
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