Dr.Stopping bicaludamide : After a few... - Advanced Prostate...

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Dr.Stopping bicaludamide

Spagnoli12 profile image
42 Replies

After a few months on bicaludamide, abiraterone, pred, and lupron injections, the doctor said, via text response, that I was done with bical. Anyone know why they'd stop it? What it accomplished? It's impossible to talk to him except by texting his nurse.

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Spagnoli12
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42 Replies
noahware profile image
noahware

It's side effects can include liver (enzyme) problems and breast growth/pain, but I'd think those would have shown up early in treatment.

I think it is mostly used now to address T-flare that can come when starting Lupron, so that's probably why he said to bag it. But keeping it is fine, too. Dr. Scholz has said that docs often cut it short (or omit it altogether) is out of habit, from when it used to be really pricey.

Spagnoli12 profile image
Spagnoli12 in reply to noahware

Noahware, more great info. Thank you. This community is the best.

tango65 profile image
tango65

The RCT were done with ADT plus abiraterone without bicalutamide. They use bicalutamide to control the flare of testosterone caused by the initial lupron injection. The bicalutamide is usually stopped after 3 or 4 weeks.

Spagnoli12 profile image
Spagnoli12 in reply to tango65

Thank you, Tango!

tango65 profile image
tango65 in reply to Spagnoli12

Best of luck on this journey!!.

Spagnoli12 profile image
Spagnoli12 in reply to tango65

It's my friend. I'm his advocate. Very worried for him. He's worn bilateral nephrostomy bags and tomorrow they may, or may not, insert internal stents. My concern is how this will impact him, as he's having no trouble at all with the bags, but if stents are inserted, what complications could arise that may give him problems....problems he doesn't have now. It's concerning.

tango65 profile image
tango65 in reply to Spagnoli12

This article has a review of possible complications of the stents:

nature.com/articles/nrurol....

sci-hub.tw/https://www.natu...

Magnus1964 profile image
Magnus1964

In my humble opinion doctors seem to be dismissing casodex in favor of newer more expensive drugs. I would not allow my doctor to treat me in such a way. Hold his feet to the fire and make him/her explain why.

LearnAll profile image
LearnAll in reply to Magnus1964

I agree. I was having tremndous response to Bicalutamide and in two weeks ,it dropped my PSA by 50%. To my surprise, MO stopped it and put me on Lupron and Zytiga. I still do not know why there was a need to stop a medicine which was working so beautifully.

My suspicion is that Docs are also part of Onco Industrial complex to push very expensive, heavy duty meds whick cause severe side effects like necrosis of jaw etc and then come up with even more expensive and toxic drugs to control those side effects.

I have been doing well on Lupron and zytiga for last 9 months. PSA dropped 99.95 % .

I decided to stop Lupron and zytiga this week and start my beloved Bicalutamide again. I plan to monitor PSA every 2 weeks. If MO gets pissed..hell with her ! Risk is mine.

Does anyone have a really good reason to explain why bicalutamide should be stopped if it is working great for someone ?

tango65 profile image
tango65 in reply to LearnAll

This links has some data of the efficacy of bicalutamide vs enzalutamide in metastatic hormone sensitive cancer:

ascopubs.org/doi/abs/10.120...

Some info in castration resistant cancer:

ascopubs.org/doi/abs/10.120...

ncbi.nlm.nih.gov/pubmed/288...

There is also the potential risk of cross resistant with other antiandrogens since the AR-V7 splice variant may drive bicalutamide resistant. This variant is associated with resistance to abiraterone and enzalutamide treatments.

ncbi.nlm.nih.gov/pmc/articl...

LearnAll profile image
LearnAll in reply to tango65

I am hormone sensitive with 99.95% decline in PSA.(PSA 0.4) Planning to stop Lupron and Zytiga and to continue only Casodex with close monitoring of PSA,ALP etc. If casodex fails then will go back to lupron and Abi immediately.

Plan is to save Heavy LUTAMIDES, Chemo, Lu177 etc for the future. If a handgun is doing the job, why use a machine gun !

Will Continue Casodex as long as PSA remains less than 1.5. Whats wrong with this plan ?

tango65 profile image
tango65 in reply to LearnAll

If it is true that the AR-V7 variant may cause resistance to casodex, Abi may have less efficacy if used after Casodex failure.

LearnAll profile image
LearnAll in reply to tango65

But Casodex may work for 5+ years just like it did for our valued member Magnus.

He was only on Casodex for over 5 years.

noahware profile image
noahware in reply to LearnAll

I am considering bicalutamide monotherapy, myself. One thing that Dr. Bob Leibowitz has been quite insistent about, for many years now: if you use bicalutamide and it works, but then STOPS working, never return to it again after switching meds. He insists that it will actually FEED cancer progression when used again, after the cancer gets "smart enough" to build resistance in the first leg of its use.

I'm not sure I fully understand the mechanism at work, but when a guy I trust uses the word "contra-indicated" that many times, my own use of bicalutamide will be one-and-done (whether that use is for a few months or a few years).

Magnus1964 profile image
Magnus1964 in reply to noahware

Of course when casodex fails you can't go back to it. But it is an almost side effect free drug.

I hate to sound paranoid but I see the fine hand of the big pharma. They are paying for studies that show doctors need to use their newer more expensive drugs while the patent is still good.

noahware profile image
noahware in reply to Magnus1964

Thanks, it's my first choice right now. Glad to hear you had good luck with it!

jmurgia profile image
jmurgia in reply to LearnAll

I'm on bicalutamide monotherapy. My PSA decrease hasn't been as dramatic as yours, but I'm pleased with my progress, I just came off a 2 month bicalutamide vacation. I'm watching the ALT and AST values.

LearnAll profile image
LearnAll in reply to jmurgia

Thanks Jmurgia for info. Makes me more comfortable to hear this. Man..Lupron gave me tiredness and took zest out of my happy life. Zytiga caused my blood pressure to go in range of 180/120. I want some QOL back. BTW, my AST,ALT,BUN,Cr all are good. I am hoping casodex to give me at least 2 years of good QOL.

tango65 profile image
tango65 in reply to LearnAll

You are preaching to the choir. I have been using bicalutamide intermittently for 3 1/2 years. None of the 4 oncologists I have consulted with liked the idea. I hope there is not cross resistance mechanisms between bicalutamide and the Heavy Lutamides you refer to.

I just wanted to post some info about efficacy of bicalutamide when compared with enzalutamide and the mechanisms of resistance to bicalutamide.

Best of luck.!!

jfoesq profile image
jfoesq in reply to tango65

Tango- I looked at all the links you provided and my understanding is that Enzalutamide appears to be the better treatment choice compared to BICAL for both hormone sensitive and hormone resistant. Am I missing something?

Thx

tango65 profile image
tango65 in reply to jfoesq

No, you are right. Most MOs prefer to use the new anti androgens because they offer an advantage in survival over bicalutamide. I do not know what happens to patients taking bicalutamide when they crossover to the new anti androgens. If it is true that there is cross resistance between bicalutamide and the new anti androgens, those of us taking bicalutamide could be in trouble.

jfoesq profile image
jfoesq in reply to tango65

Thank you, Tango.

tango65 profile image
tango65 in reply to jfoesq

Best of luck!!

jfoesq profile image
jfoesq in reply to tango65

And- to you and all of our brothers.

traveller64 profile image
traveller64 in reply to LearnAll

I’ve been on bicalutamide monotherapy for more than five years, my recent psa is 0.034

My MO was Dr H. Scher (MSK) who started this treatment 5 years ago. My current MO is Dr C. Higano and she did not make any changes in my treatment. So I think not all doctors push expensive new drugs.

Magnus1964 profile image
Magnus1964 in reply to traveller64

👍

jfoesq profile image
jfoesq in reply to traveller64

Traveller- That's very interesting. Dr. Scher treated me for about 5 years, until he was promoted and stopped seeing patients about 2 yrs ago. But- he treated me INTERMITTENTLY with Lupron and Zytiga. I was able to go on 3 vacations, each one shorter than the previous one. My present MO is Dr. Rathkoph, who initially stopped the Zytiga, but had me on Lupron only, until my PSA became measureable and then re-started me on the Zytiga. I wonder why SCHER had you on BICAL and me on a different course of treatment.

traveller64 profile image
traveller64 in reply to jfoesq

Before my first visit to dr Scher I already started Casodex 150 mg for about 3 weeks. Scher was not in favor of Casodex during the first visit but one week later, after seeing the scans and blood test results, he decided to continue with Casodex and reduced the daily dose to 50 mg. After one year on Casodex he took me off of Casodex for about 6 months and then reduced the dose to two Casodex 50 mg tablets per week. This dose was sufficient for about 2 and half years. I increased the dose to 50 mg daily one year ago. My feeling is that he liked to try unorthodox approaches.

jfoesq profile image
jfoesq in reply to traveller64

Unorthodox? Yes- I was only his 13th patient he had get their prostate removed despite the PC being metastatic. When I conferred with 2 other NYC experts for their opinions on my treatment and they heard that Scher recommended surgery, their jaws dropped to the ground- they were in shock. Scher felt that they remove lumps from breast and tumors from lungs when the cancer has spread, so why not try it, given the fact that I was otherwise healthy and young and could tolerate the surgery. He then had me take Lupron and Zytiga (before Z was approved for hormone sensitive) and had me take them intermittently. My present doc is much more by the book/SOC.

Best to you

jfoesq profile image
jfoesq in reply to traveller64

Traveller- As a follow up- was your PC metastatic when SCHER treated you with BICAL only?

Thx.

traveller64 profile image
traveller64 in reply to jfoesq

No, I was never metastatic. However my psa doubling time was less than a month, 5 years ago when I learned that I had a relapse

jfoesq profile image
jfoesq in reply to traveller64

Thx. When I was dx more than 7 yrs ago at age 54, I my PSA was in id 40s, Gleason 9 and I had a few mets in 2 verterbre,left acetablum and possibly 2 ribs. While my cancer has remained under control,I did go on 3 vacations, the last one allowed PSA to rise to around 5.0 and now I believe I have a met in lymph node and one in the lung. Just re-started Zytiga to Lupron after a 2 yr break from Zytiga as PSA became measurable at .08, .10, .12, .13, and .13 again.Hoping it remains there or possobly drops.

Spagnoli12 profile image
Spagnoli12 in reply to Magnus1964

He was on all 3, until this week when we needed a refill and the MO said via nurse/text, "Done with bical." No reason, explanation given. What can we say to this MO--we want him on all 3? Or not one of the others? And what reason do we give when we're not sure why the MO himself said it, and we won't see the MO. for weeks.

LearnAll profile image
LearnAll

Go to pubmed and read casodex Vs lupron studies in 1990s. Many of them put equal efficacy of lupron and casodex. Interesting ! now that Casodex has become cheap..suddenly it is not good enough anymore !

Spagnoli12 profile image
Spagnoli12 in reply to LearnAll

Oh....

you know, I'm becoming more cynical the more I learn. His MO doesnt supply context for his decisions. There's no dialogue about how this plays out going forward...just so much that goes unsaid and as I've said before, I'm reluctant to ask the tough questions because the patient himself seems not ready to hear the answers. I asked one question and the doctor gave me a look like teenagers give the oddball kid and said, " I dont know what that means". But there was that stare first that said "duh".... I asked him if it was a "hot tumor" as in inflammation, because they spread differently, but after the look, I thought, ok....I get it. I'll shut up.

Magnus1964 profile image
Magnus1964 in reply to Spagnoli12

You are the patient and deserve and are required by law to be given answers about what medical decisions are being made.

Tall_Allen profile image
Tall_Allen

The androgen receptor may learn how to feed on bicalutamide. When that happens, stopping it may actually lower PSA (called bicalutamide withdrawal syndrome). I can't imagine that it is doing much if anything for you if you are taking Lupron and Zytiga.

Spagnoli12 profile image
Spagnoli12 in reply to Tall_Allen

Thanks!

Spagnoli12 profile image
Spagnoli12

Thanks so much. This is a lot to learn. Tony is a "need to know" kind of guy only for him that now means "(Tony does not) need to know..."

Gearhead profile image
Gearhead

I had the same experience and question about 10 months ago: healthunlocked.com/advanced...

Magnus1964 profile image
Magnus1964

If my MD only communicated via text from a nurse I would fire him.

j-o-h-n profile image
j-o-h-n

Do what I did long time ago with a real estate agent. Buy a small hatchet from Sears and have them wrap it with the handle showing. Walk into the Doctor's office and slam the hatchet on his desk (sideways) and in a stern voice say "what's this shit about you NOT communicating with me?"

BTW the real estate again dropped the lawsuit.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 03/04/2020 6:15 PM EST

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