I recently switched from my urologist to a medical oncologist and had my introductory meeting with him. I laid out my hopes and dreams (live long enough for a cure) and he politely dashed them with the "goal is to remain as comfortable as possible" line. I am just at the point where my PSA is rising after being on Lupron for 18 months, and as of June there was no evidence of metastasis yet. Dr. J suggested the my next course of action, if my PSA rises to 1.5 or 2.0 would be to start bicalutamide. It seems that his theory is to try to milk each treatment for as much time as we can get out of it. Honestly, I don't really hear of anyone being prescribed bicalutamide any more. Thoughts? I am thinking that if my PSA does rise, I might want to get a second opinion. His philosophy seems pretty old school.
Bicalutamide?: I recently switched from... - Advanced Prostate...
Bicalutamide?
At least you will be comfortable....Dr. Nalakrats put me on weekly Gator transfusions and its not only uncomfortable but down right dangerous to wrestle a Gator into submission on a weekly basis
Gus
I would get a second opinion now--based upon his outlook, not his treatment recommendation.
Sometimes one needs to give a doc a break. I think he was merely saying that he'd probably try to strike the best balance for you. Living long enough for a cure is a noble but difficult aspiration for any doctor to respond to.
Perhaps tell him - 'I am fighting this bastard as hard as i can, so treat me on that basis'. Might have elicited a different response.
Anyway great no signs of metastasis so hoping good things for you!
I agree with YostConner, find another oncologist. This guys thinking is way, way out of line. Your just getting started. don't make the mistake of letting someone read off a flow chart and tell you whats next. Personally I would bitch slap the fool on my way out the door. but thats just me, a hard ass since birth. Ask him about Provenge and see what he says. I had an oncologist call provenge voodoo. Well, security escorted me out the door. I really need to chill.
I'd get a second opinion. Just came back from MD Anderson tonight. I go there every 6 months in addition to seeing my local oncologist. They would say they are aggressively treating what they consider a chronic illness.
My PSA is 1.2. All my scans this week were good. And they told me if my PSA goes to 2.0 they want me in a new study that uses multiple drugs. If I decide not to be part of the study, they said I'll keep taking Lupron and add Zytiga.
Does this advice sound different than what you heard from your oncologist? It may be because a lot has changed in the last several years with prostate cancer treatment. There are a lot of new drugs. The new trend is combining medications and starting chemo much sooner (see the Stampede study and the Latitude study).
I think a patient doctor relationship is a bit like dating. You need to make sure you have good chemistry. But, most importantly, you need a physician who is on top of the latest research and treatment options. And who specializes in prostate cancer.
I'm sure if you ask this forum you can get a good local referral or a referral to a top hospital if you are able to travel.
Good luck!
Hey jamesAtlanta, I too go to Md Anderson. My oncologist has me on casodex and hopefully will do radiation-waiting on incontinance to improve. They told me not a big rush on radiation. We will watch PSA .22 and check again in 3 months. I guess even Drs at MD have different protocols. I also see my surgeon Dr Miles from Methodist. They both agree for now.
I was dx in Nov 2014 with a PSA of 209 and bone mets on pelvic area. Got on Firmagon and Bicalutamide and PSA dropped to 1.2 after only 30 days. At 2 months my PSA was <0.02 or undetectable. My Dr. then stopped the Bicalutamide and my PSA slowly rose to 0.06 the 3rd month and then 0.15 the fourth. He then put me back on Bicalutamide and my PSA has since been <0.02 undetectable. I find Bicalutamide easty to take and once it stops working then I can look into Zytiga and others. I believe it is worth trying as you may be one of the lucky ones that it works for as I have been so far. I am also on a monthly injection of Firmagon or Degalirix which is similar to Lupron
It would be advisable to find another Oncologist who will not tell you "Ignorance is a Bliss" when you are intelligently and rightly trying to set your goal for long survival with a cure or to be more accurate stable remission.
Your GS 9 aggressive cancer needs equally aggressive treatments. Why not think of early Chemohormonal Therapy whilst your PCa is still hormone sensitive. Chemo is capable of killing even the hormone refractive cancer cells and its early use will yield the maximum benefits.
Sisira
While it is true that we all will die, even those without cancer, I think it is a bit early to "take it easy". You may want to get a second opinion. Did you ask him/her why they did not suggest Zytiga? One of its claim to fame is as a replacement for bicalutamide.
You may also want to ask about an Axumin PET scan. It just became available in 2016 and is a lot more sensitive than "normal " PET scans.
Dr_WHO,
Before you took Zytiga did you get tested for the AR-V7 gene variant? If so, who did the test? covered by insurance? if not how much? I know they can could do it from tumor tissue.
Rich
No I was not tested. I have asked because I have a rare cancer (Ductal) that not much is known about. I had to fight for about four months to get them to test a pathology slide from a lymph node. Turns out that about 30% of the cancer does not produce PSA. While the doctors agree that PSA can not be used to monitor the non PSA cancer I had to fight to get scans.
DR_WHO,
It tears me apart when brothers have to fight for neccessary medical procsdures.
Rich
I went back on Lupron and bicalutamide again after my PSA rose again after I had stopped it. I waited til it reached 2.0 and got the axumin scan which located my first bone met which I zapped with SBRT. PSA is back down to .3 .
Bob
Dr. Myers is very much against the sequential approach. I understand the desire to have something else in one's back pocket, but the mean-time-to-failure for every PCa drug is short (18-24 months is often quoted for Lupron.) The idea is that the MTF for a combo is greater than the sum of the individual MTFs.
My urologist (yes, I continue with my urologist. I have been told that no oncologist within a 4 hour radius would put up with my approach) said that typically, when he starts someone on Lupron, he considers adding Casodex (bicalutamide) & Zytiga.
I'm not ready yet, but along with Avodart, Simvastatin & Metformin, which I already use, it sounds like a reasonable approach, IMO.
I think bicalutamide (Casodex) is still widely used. The alternative AR antagonist is Xtandi, which is expensive.
-Patrick
Patrick,
I discontinued Casodex; I am going to see if I have a PSA drop and I need to give it 3 months, while I am on Lupron. Then I will Have a AR-V7 gene variant test before I go on Zytiga. My cholesterol is low, controled by diet; however, I am thinking of adding Simvastatin to fight PCa.
Rich
PS: I am trying to find an outfit that tests AR-V& gene variant. I know they use tumor tissue; however, is there a liquid biosphy?
Rich
"goal is to remain as comfortable as possible" ??? Hey Doc if I want comfort I'd buy me a lazyboy recliner with a built in tv remote....ADIOS....
j-o-h-n Thursday 08/03/2017 10:13 AM EST
Thanks for all of your replies. I'm glad your opinions bear out my concerns. I am happy to hear that bicalutamide does work for some people so it's worth trying. My mo is at a leading NCI accredited research university hospital, so I don't think he's been living under a rock. Maybe it will take a couple of appointments to get to know each other.
I've been on it for over five years now and my PSA has been undetectable after the first six months. My PSA was 1.2 and rising after a radical prostectomy and 39 radiation treatments. I have experienced very few side effects. My oncologist has told me it might eventually quit working, but he said he has a bag full of other treatments if it quits working. Hopefully it could work for you too.
From your lips to God's ears. 
I would be really happy to have the results you are having. Thanks
Just got my most recent PSA and it is 1.2 as well. I had both the RP and 39 radiation treatments. So we are kind of on the same path so far. I'm hoping my next five years also match yours.
You are correct; it is a blood test at John Hopkins. Are you thinking ofv getting tested? Are you thinking of taking Zytiga?
Rich
Thank you for your research efforts in this area. I hope, for all the brothers that you and Patrick are successful in this effort.
Rich
Old fashioned or not, we plan to request the addition of 150 mg of Casodex and 5 mg of Proscar to the leuprolide I’ve been on for over a year. I also will request a statin and need to continue researching which one. You’re getting great advice from both sides of the issue.
What I fear most is more angiogenesis (I have bone mets.) Surgery and radiation cause it. If you don’t mind going back in time, listen to Dr. Bob Liebowitz (the 2002 version). He makes a lot of sense to us. I don’t entirely disagree with your oncologist as you can tell. All the best, Leswell
Signs point to changing oncologists. It may just be that it's not the right fit, but I agree with many others -- this seems a very passive approach to your disease. Within the first few months, we had to change because the guy was just the "here's the flow-chart" - see, we're treating your cancer type of doctor. We wanted more than that. You are still in a fairly early stage of advanced (comparatively speaking) and so you have options. Find a regular oncologist who fits well with you, your personality, your approach to the disease.
FYI (and in some support of your onco's comments) -- Dr. Eric Small at UCSF (big honcho in PCa) gave us a Pony Express analogy -- so yes, ride each horse as long as you possibly can. Any rise in PSA is scary but yours is still pretty low. Adding bicalutamide sounds correct but check on it. I don't think you can be declared "castration resistant" until bicalutamide + Lupron has stopped working.
As others have said -- also get yourself to some kind of expert prostate cancer medical oncologist. This is more of a consulting person (Dr. Small for us) than a treating person. Most insurance should cover this -- although they might request that any scans, studies, etc., be conducted in your own network (and not duplicated). We see the "uber oncologist" once or twice a year, and he is really good at giving us a "big picture" approach. When first diagnosed, this visit was priceless because at home we got the "palliative care" line too -- which was accurate but a lot more complex than "palliative care" sounds. (Age 51 - Gleason 9 but extensive mets in spine and pelvis at diagnosis with a painful pelvic microfracture, and a raging tumor that became castration resistant pretty quickly.) And my husband's regular oncologist is appreciative of the extra input.
You have a lot more you can try, but I think in general it is good to ride things out as long as possible because that keeps your options extended. We've done everything except abiraterone (currently on enzalutamide but it's starting to fail). Xofigo/RA223, Provenge immunotherapy, early chemo (CHAARTED), Lupron every 3 months + Xgeva for bones every month. Rapidly went through these but he's been on Xtandi/enzalutamide for almost two years so our theory is that everything sort of came together to work.
There are also dietary things to watch (without getting into a lot of complexity, though some people swear by that -- we just try to eat "normal" but well).
Sounds to me like you just need good information so you can make informed decisions. So - definitely find a consulting place/doc,also check out libraries at Cancer Center near you for specific books on Prostate Cancer -- there are some good ones out there to just give you an overview.
And this site. The real problem (in my view) in *dealing with* with Stage IV PCa is that it's not so typical. That's why UsToo didn't work for us -- our local group had no one in this category. But that's why this site is so important.
I wish you the best in sorting this out. Keep asking questions and keep fighting!
I just read again all of the responses, thanks again for taking the time to write. I had my follow-up with Dr. J today as I said, to pick his brain some more and make sure that there was no misunderstanding. My PSA rose to 1.89 this time, from 1.2. So we did decide to start with bicalutamide along with the Lupron injections. He again mentioned the sequential approach and I stopped him and said that given the clinical trial work being done with combinations of treatments etc. I'm not sure I agree with the sequential approach. He was a little surprised but went on to explain that in his view, the sequential approach now does NOT mean that as we learn more we wouldn't try more aggressive approaches. He said that at the stage I'm at, I shouldn't be looking at a 3 year horizon. He is considering 5, 10 maybe even 20 years out and doesn't want to introduce excessive toxicity into my body if I don't need it. He said that bicalutamide probably won't be an effective solution for very long, but why not try it for whatever benefit I can achieve, the "ride the pony for as long as you can" concept. He convinced me that our long term view of my treatment plan isn't that far apart. But I was panicking and he was trying to protect me for the longer term. I appreciate that actually. I brought up the idea of statins and he said that was a good idea and added it to my prescription list. On the whole, i feel much better about him. He is at the University of Minnesota, and there are quite a few trials with CAR T treatments and things going on there. He promises that he will keep me in mind for any relevant opportunities when the time was right.
On a more interesting side note, I also saw a nurse to get instruction on penile injections for erections. A small dose worked wonders and it didn't hurt much at all. So if Dr. J is going to keep 10 years in mind, so am I!
cfrees1 - after my radical prostatectomy (stage T3b and Gleason 10) in Oct , 2016, at my first PSA reading in DEc I was at 5.69. I got five weeks of bicalutimide (casodex) which brought the PSA down to 3.69. Then I got Lupron depot 22.5mg (every three months protocal) in January which brought my PSA down to 0.49. In July the PSA went up - 0.99 - so got my lupron injection and placed back on casodex daily (50mg). So now waiting for next PSA check in October. Also waiting for radiation treatment after getting to a better point of being continent. Scheduled for 40 treatments (planned anyway at this point). Personally have been thinking of contacting a medical oncologist to have that specialty input in addition to my urologist who is presently directing my care. I have learned there are many ideas for how to treat PCa. I feel maybe two or more heads are better than one. Read all you can (this site has many great comments on PCa and treatments as well as listing sources to study). Be involved with your treatment. There are many differences from patient to patient - disease and treatments are very personal with respect to results. I always wonder and question but will go forward each day. Best of luck not only to you but all of us here on this journey. We are never alone.
David
Got my first set of labs back today after six weeks on Casodex (bicalutamide) in combination with Lupron and my PSA dropped from 1.89 to 0.8. So that's good. We don't expect it will last very long, but this appointment was the first in a long time that there was actually some good news. Yay! We'll ride this pony as long as we can.
I would make sure you had the best PET scan, the newest one...that DOES find early spots of cancer in bones and through out the body...(glands, etc)...and then if any...jump onto the "Stampede" based treatment...0f early Chemo and Castration!
I had the Axumin scan in June and it came back clean, so my next scan will happen after my PSA rises again. Right now, with a PSA under 0.1, it is doubtful that any scan would find anything.
It worked great for my husband. I wrote about it on here.
My Intermittent Bicalutamide mono therapy
Bicalutamide Vs Eligard
Advanced prostate cancer:- After Chemo, Bicalutamide also stopped working. What could be our next step?
Bicalutamide vrs zytiga
Bicalutamide not working any more! 
