Have lost faith and patience with husband's current docs, they are now contradicting each other.I have enough airline points we can fly for free anywhere in us so I'm looking what would be best hospital /treatment center that has multiple treatment protocols where we can learn about treatments like Proton therapy, provenge, pluvict,ablation with gold nanoparticles, HiFU, etc. I have no idea what any of these are but we would like a bigger range of ideas than he's currently getting. We do need them to accept original Medicare and Medigap
better options: Have lost faith and... - Advanced Prostate...
better options
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Spring15-3
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In our era of specialists, there is no such thing as one stop shopping. There are experts in each of those topics, but experts may, and should, differ. Your best bet is to elicit opinions about the therapies you are faced with for your diagnosis.
I'm not looking for who is expert in everything. I'm looking for a clinic/doc who has a better range of options than the very limited treatment (1 treatment) he's currently getting. When one oncologist says nubeqa may not be working, let's stop and look at chemo and the other one says lupron doesn't seem to be working but he should stay on it anyway and he's not showing enough mets for me to agree to chemo. I want to see more than 2, I'm thinking it's time to go someplace else
Gotcha (I was reacting to your laundry list, but now I've read your past posts and understand what his situation is). I wasn't there, of course, but I can guess at why you've heard those recommendations, and I can propose other options for you to explore.
Chemo doesn't do much when the cancer isn't actively growing. Active growth is suggested by scans showing more and larger metastases, rapid PSA doubling time, and a PSA of at least 2.0. Until those benchmarks are reached, Nubeqa is still effective. Lupron is always effective in that it always suppresses testosterone. As your husband becomes increasingly castration resistant, it is more important than ever to eliminate testosterone.
Because your husband had bone metastases, Xofigo may be a good choice for him. Here are some combination therapies that have been effectively used with Xofigo.
prostatecancer.news/2021/02...
Oliver Sartor has moved the Mayo in Phoenix and has experience with most therapies that will be of interest to you. There are many excellent medical oncologists. I've found they all know one another and know what the others are working on. The top ones work at the top tertiary care institutions and are lead investigators in most of the ground-breaking clinical trials. Off the top of my head, in California (which is where I am) are Tanya Dorff at COH, Edwin Posadas at Cedars-Sinai, Rana McKay at UC San Diego, and Rahul Aggarwal at UCSF. I don't know where you are, or I would suggest doctors close by.
thanks for that! It's the second time Uc san diego had come up. I'm in NC but like I said, I'll travel wherever for him to get some semblance of his life back. I have enough travel points that I'll be traveling for free for years. I think I'm down to San Diego or Houston based on recommendations
No need to go farther than Duke. Andrew Armstrong there is on anybody's short list of top Medical Oncologists in the US, and their labs are second to none.
My regular MO is in Santa Rosa CA but I have had a few zoom appointments with Dr. Rahul Aggarwal at UCSF and find him very knowledgeable and trust worthy. He does not have one plan to fit everyone. I imagine you could make a zoom appointment with him if referred by another doctor or maybe even if not. I have medicare and a good supplement and don't think I ever paid a cent. He is also fairly young and will probably be doctoring as long as we need him.
Also Dr. Daniel George at Duke. Been going to him for years and am in NC. Also saw Dr. Armstrong years ago.Hugh
Did a quick scan of the link. Xtandi seems to be a big part of those trials? He has a horrendous react to xtandi which is why they started nubeqa
Are you talking about Xofigo+Xtandi? It works equally well with Zytiga.
there is at least one new Mets and the psa was 5.87 in Oct, 8.05 in Jan and 7.38 in Feb. Not doubling in guess but close
"Oliver Sartor has moved the Mayo in Phoenix..."
What? He is no longer at Tulane?
we see him on Monday at Tulane. I believe he is scheduled to go to Mayo at end of March (but I thought it was in Minnesota)?
You're right unless something unforeseen has happened.
"Breaks my heart. Dr, Sartor is leaving Tulane
email just received
It is with mixed feelings that at I notify you of my departure from Tulane clinics at the end of March 2023. I will have no clinic appointments after the end of March.
My practice will be moving to Mayo Clinic in Rochester, Minnesota thus I realize this will impose a significant issue for some patients. I’m working diligently to ensure that each and every patient is properly placed into a situation appropriate for them. It is my hope that every single patient with an appointment will be contacted individually."
I've omitted the rest of the letter.
My bad then - Mayo Rochester MN. It's about time Mayo got a world class MO for prostate cancer.
100% agree.
I thought Dr Kwon was at Mayo and that he was among the best..
He isn't a medical oncologist, and he certainly markets himself well to patients.
Mayo in Minnesota
Would be VERY interested in that list of doctors in the Houston, TX, Beaumont, TX area TA.
I like Eleni Efstathiou at Houston Methodist, and Paul Corn at MD Anderson.
Thank you
Maybe a silly question but does Paul corn listen? So many of them have preconceived ideas
Idk - I've never personally talked to him, I've only talked to patients and doctors who have.
You could change from Lupron to Firmagon monthly injections if you wish.
I would need a little history on husband, what stage is he, what treatments he has received, etc. Maybe I (we) could give you some guidance on his doctors "conflicts".
Magnus
Prostate cancer 6/2020 stage IV (cT2a cN0 cM1b), Gleason 4+4, PSA 110, multiple bone mets -ADT with Lupron 7/2020 (Allen), PSA declined from 110 to 8, increasing to 25 in 12/2020. -rising PSA and declining urinary function 1/2021, enzalutamide instituted with excellent initial PSA response but cognitive decline necessitating 50% dose reduction. PSA rising late 2021. -denosumab 60 mg every 3 months 2021
Psa went from 5.8 to 8.5 to 7.8 from Oct 2022 to feb 2023. Psa numbers may not be exact but they're close. It's hard to find stuff in their app. He's been in lupron for about 2 years now. Xtandi had such horrendous side affects that they changed to nubeqa. One doc says it seems to have stopped working, let's go chemo, other doc, same university says it seems to have stopped working but stay on it and no to chemo because he " only" had one new bone met. They say no to targeted radiation but won't say why, they don't bring up any other options and don't listen when I tell them the confusion /memory loss caused by the lupron and nubeqa are magnifying the adhd issues. After all, he's 80, it's probably alzheimers, 🤬which I find odd since it all started with these meds. He's got a swollen right hand that stays colder than left and intermittent tremors just in it. Naturally they jumped straight to Parkinsons. He's got weird reactions to meds. For example a doc tried a statin on him and he woke up angry and got progressively worse through the day. We dumped it and handled the cholesterol through diet. VA did genetic testing on him for common drugs and there are a few red flagged for him so I'm sure there are uncommon drug she also would be red flagged for (like xtandi) but these guys all but pat me on the head and tell me it will be fine. Sorry for the rant but hopefully the information you need filtered through my stream of consciousness 
in reply to Spring15-3
There is no Need for sorries here about any rant . That’s what this cite is for . Rant! Ask questions , cry if need be , no judgements . We all fight the same foe! ✌️😎we can relate to you and your Husband ! 🙏
I would be raging mad also. I've gone through some doctors in this battle and fired a few.
Doctors are not gods and they are have no right to treat patients like little children. You are paying for their services and you should get answers.
Unless the new met is too near a previously radiation site, salvage radiation is possible. Demand an answer.
His last few PSA scores are at tolerable levels. They seem to be bouncing a bit. Since he has had a bad reaction to xtandi, I might suggest zytiga or Casodex. They work differently and may not have many side effects.
never been any radiation at all and I can't get a straight answer on why
The tumors may be too close to vital structures such as the descending aorta or kidney.
two bone mets. Not near anything else. I've seen the pics
Find a new doctor.
that's why I'm looking for recommendations here 😊
He sounds a lot like my spouse, also 80, PC with Mets but more stable with PSA, with cognitive issues on Nubeqa.
in reply to Spring15-3
I am also blaming the lupron for confusion memory loss and behavior unlike my husband. My husband is 74 , they totally ignore this. I notice he slurs his words sometimes, and is frustrating watching this decline. I agree with you, their grab bag of treatment is extremely limited. Good luck to you and a treatment that will help your husband.
Spring15-3 in reply to
you too! It's crazy the way they ignore the people who are up close to the changes
in reply to Spring15-3
exactly! I am sure there are many woman on this site that agree with you. Believe me Spring, I miss our old life!
You could consult in several centres of excellence, such as Sloan Kettering in NY, Dana Farber in Boston, John Hopkins University in Baltimore, MD Anderson in Houston, UCSF in San Francisco, City of Hope in Los angeles, et. My predilection will be Sloan Kettering, Dana Farber (Harvard) and MD Anderson.
Dr.Kwon at the Mayo Clinic in Rochester MN Amazing Dr. See him first
i don't think Lupron or Nubequa cause cognitive decline.
Also, re. Nubeqa, (Darolutimide), "Darolutamide is used to treat prostate cancer that has not spread to other parts of your body. drugs.com/mtm/darolutamide....
also re: nubeqa...and that has apparently changed. At least that's what I was told
Possibly, it helps in lieu of Xtandi. My understanding is that bone mets are often or normally treated with radiation, depending on location.
It's very difficult to accept our loved ones prognosis. It is natural to want to protect and fight for them. It sounds like he has had the the best and logical treatment for his progressive cancer. There can be slight differences in suggested treatment offered. This does not mean the doctors are inadequate. Everyone reacts differently to treatment. Some doctors will keep trying more treatment and meds when the patient wants to keep trying everything available no matter the risk. Age and overall health is a big factor in what a patient is able to tolerate though. Often hard to accept but true. There comes a time when the options are few, or one has just exhausted them. The heart over rules the brain sometimes.
sorry. No. There has been no real effort to treat
You listed the treatment drugs he has been on. That's how prostate cancer is treated. All doctors can do for it is slow and hopefully stop the spread. Which is more difficult when it has metastisized.
there is more than drugs
for metastatic cancer, other than for pain or some other physical impairment a metastasis is causing, drugs are the principal treatment.....unless "just" 3 or fewer detected metastases I believe.
it's not drug treatment I am objecting to but this particular treatment. It has destroyed his life and I know there are other options. Dr corn is looking into them because he understands "Zebras"
which"particular treatment" ? I'm often out of the loop re various lingo..... " Zebras" ??
too lazy right now to ask Google, my near and dear friend!!!
lupron is the worst. Zebra is an unofficial medical term. Docs learn "most think if you hear hoofbeats think horses but rarely it is a zebra" Is for those who have odd/uncommon /rare reactions to medication.
OK......sorry to hear that your hubbyis among those who are zebras. In other words, Doc knows about what has happened with Lupron specifically,and that what has happened is not "just" one of the common reactions to zero T.
removing T availability from mutated PCa cells is the primary treatment once metastases are known...or a PSA recurrence after RP or Radiation...but I see you are quite with it on most of this already...pardon my repetition!!
I think most Docs, especially MOs who treat PCa, are quite aware of the devastation that many men suffer from the treatments...the argument is that the devastation from uncontrolled metastasis is even worse, of course.
Praying for everyone here ....men and family of those men!!!!
by the way. I am pretty much total logic which is why it know doctors aren't gods and they screw up. If any of them could present to me LOGICAL reasons for their lack of options/contradictory opinions I shootings accept that so thanks for writing me off as a hysterical female.
Being female myself, I never implied that you were just an hysterical woman. I have been dealing with looking for the best treatments for my husband for seven years. We have met with several specialist and I constantly read everything I can looking for a miracle. I wish you well in your search for helping your husband.
of course you did...heart overules head. That just doesn't Hakan in my world and to me defines hysteria. I have been accused of being cold because of this.
Obviously, it's a matter of interpretation then. I think it's perfectly LOGICAL to have my heart play into all decisions regarding my loved one's care. That is in no way an insult for anyone, male or female...just human nature.
and I should apologize to you. I'm one of the few that consider emotions a weakness
reason for lack of options? Because none have been discovered at this point in time, beyond what you will hear from men here, and checking the NCCN guidelines, which are mostly what guides cancer Docs. I think "good" Docs will express humility about what they, and medical profession in general, do and don't know about cancer and treatments....still a moonshot needed!!! Must MHO from too much reading about this stuff.
Dr Corn is looking into a couple of treatments that will get him off lupron at least for a while
The doc in the attached video is one of the good guys.
youtube.com/watch?v=81iAzYV...
Good Luck with your decision.
Fight On!
Andy
thank you!
I always remember that M.D. does NOT stand for Medical Deity!
love this!
suggest UCLA Medical Center as they are the leaders in Cancer treatment second I would go to the Mayo. Both are top shelf.
so he has type 2 diabetes that's controlled and prior to all this crap our idea of a vacation was to go hiking in national parks. He did bryce canyon just before the diagnosis. We average 3 mile hikes daily when we are in one of the parks. Since all the drugs, he's forgetful, tired all the time and just feels miserable.
in reply to Spring15-3
I hear the frustration in your posts. We also were extremely active. My husband up until two years ago was an amazing athlete, good at everything, both of us in perfect health until this. We have gone from Penn Medicine to Fox Chase in Philadelphia. Keep fighting to find the best treatment and Doctor for him.
I know this sounds ridiculous considering how tired & miserable he feels, but has he done any resistance exercise at all? My husband was so annoyed when I told him the best thing he could do for how bad he feels is resistance/weight training. He told me it's all he can do to get through the days and I (actually the doctors and suggestions from this forum) want him to do more?! No way. After a year he finally started it. What a tremendous difference it has made. He says he should've started sooner. Doesn't answer any of your questions, but may help your husband's qol in the meantime. I totally get your frustration and hope you find the right team soon.
it doesn't sound ridiculous at all. I'm a runner and I lift and I stay on him all the time about doing more but you're right, they're resistant when they're always tired and his adhd doesn't help. My daughter, who also has it says it's very hard for someone with it to stick with any kind of schedule even though it's the best thing for them. I just keep plugging away.
Trust in your doc is very important. If it isn't there it will eat you away. Expertise and empathy are required though. Some good docs don't seem to be very good at the empathy part though.
I guarantee it's the X chromosome! I'll have to check on viagra and adhd
could you explain to me why they want things to get worse before chemo? Isn't it better to get it while it's small/ not a lot of them? What am I missing?
thank you
I have been to good medical specialists and bad medical specialists and everything in between over the years. They are like any professional, their abilities can vary. Irregardless, I think it is important that patients have confidence in their providers for success in their treatments, so you need someone that you are comfortable with. 🦊
Excellent MO's in Memorial Sloan Kettering in NYC (short flight from NC)...
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 03/18/2023 6:38 PM DST
How old is he???
81 but as I explained to Dr Corn, prior to this diagnosis and "treatment" our vacations we're spent hiking national parks and our weekends are doesn't exploring County and state parks in our area. What the lupron has done to him is unbelievable.
It is most probably more the zero testosterone level, perhaps also some drug SE. Men not made to operate normally without T !!!!!
I'm sure that part of it but we also have a man who beat computers in chess not understanding simple concepts, forgetting what was said 5 minutes previously and what its done to his adhd is crazy
He is far from the 1st who has suffered this.... zero T can be devastating, but different degrees for different men. One spouse said " I don't know/recognize my husband anymore". I'm all good now...at least for 74....but Lupron for 18 months is what they want for the radiation treatment......what you describe is what has paralyzed me about proceeding with the treatment...destroy me to save me???
Over the years, I have read something by various Docs....suggesting if they have a cancer diagnosis, they will do nothing!!! don't know if any/many follow that route..talk is cheap?? Like so many, your story is heartbraking!!
don't hesitate to get other opinions and don't give up on lupron just because of this. My understanding is this severe a reaction is rare. Fingers crossed for all
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