Advice concerning treatment and suppl... - Advanced Prostate...

Advanced Prostate Cancer

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Advice concerning treatment and supplements

tasmanien13 profile image

Hi again! I am struggling to find posts about what kind of ADT-treatment that could be least harmful to my husband who has got coronary heart disease. He is on babyaspirin, atorvastatin and metoprolol. He has got a rising PSA and 2 lymph node mets. We will ask for radiation of these. I have heard that Firmagon could be easier on the heart than Lupron? Does Xoladex and Xtandi prolong suppression of PSA? He also takes several supplements; berberine, quercetin, fenbendazole, curcumin, IP6, betaglucans, vit. K2 and broccolisprouts. So many questions, so much worry!

All the best to you all!

36 Replies

The ADT drug with the least side effects and easy to the system is casodex. Also, be sure to inform his doctor of all medications and supplements he is taking.

Thanks Magnus! Does Casodex work as good as Lupron and what about Enzalutamide? Should be easier on THE heart I read. You have a Swedish name, Magnus!!

I have been on both casodex and xtandi. I did not suffer any side effects from either save hot flashes. I did get excess gas with xtandi.

Everyone responds differently to ADT drugs. Your question should best be answered by the doctor.

By the way Magnus is my screen name. I am an American.

Thank you, did you take Casodex as your first ADT? Did you combine it with chemo of radiation? Best wishes

Casodex was first ADT drug I was on after surgery and radiation. I was on casodex for 5 years. I did take some supplements during that period.

It sounds fantastic to me, the 5 years on Casodex! What supplements did you take during that period? Do you take any now? Sorry about all the questions, but I think my husband need to "downsize" his medicine cupboard....

All the best!

While on casodex I drank essiac tea, took IP6, and took vitamin B and selenium.

It is my belief that Pca finds a work-around for supplements as it does with ADT drugs. They are only affective for so long.

The two things have taken throughout are vitamin D3 and lots of Japanese green tea.

Ahk1 profile image
Ahk1 in reply to Magnus1964

Magnus,

I saw a MO at mount Sinai a year ago. When I brought up the idea of taking casodex, he said I wouldn’t recommend that. He was referring to taking something else. Is it safe to start with casodex since it’s not very potent like the others?

Thanks in advance

Magnus1964 profile image
Magnus1964 in reply to Ahk1

My opinion is that casodex is a good first ADT drug to start with. It is true abiraterone and xtandi are more powerful drugs. Since all of these drugs are doing the same thing in different ways, why start with the more potent ones. You can get months or years with casodex and then move to abiraterone and on to xtandi.

Some doctors I fear are pressured by big pharma to prescribe those drugs that still have a patent so they can make all the money they can till they go generic.

It is sad to think that medicine has come to this. We don't want to believe that our doctors are doing what is best for the big pharma and not our well being.

So true, Magnus! Our eldest son is a physician and he is looking into big pharma´s influence on the care given and also "over-treating " patients. He is doing this for his doctoral degree, it is a little bit scary I think!

Best wishes!

Hello tasmanien13,

A good source of information about drug side effects is the database of the U.S. Food and Drug Administration ("FDA"). Their web interface for searching for drug labels in the database is here:

accessdata.fda.gov/scripts/...

Searching the whole database is overwhelming but there is a search box in the middle of this page, just below "Search by Drug Name, Active Ingredient, or Application Number*", that eliminates most of the extraneous retrievals and brings back the most relevant stuff. Click on the retrieved title that looks best, and go through a few more clicks to find a list of drug labels (they often change over time). Pick the latest one. You'll be searching the documents for "adverse effects".

(I should make a separate posting on all this.)

Best of luck.

Alan

Thanks Alan, I need to get more information and your suggestion seems very Good! All THE best

A little more on Casodex (bicalutimide)...

It does not actually reduce testosterone, but as an anti-androgen it works by blocking the activity of the androgen receptor, so androgens are restrained from stimulating cancer progression. So technically it is not "androgen deprivation" or ADT, but it still is "hormonal therapy."

One of the reasons it has lesser side effects (than ADT) is that it does not destroy a man's production of estrogen. Many undesired consequences of ADT stem from lack of estrogen, and not directly from lack of testosterone.

The duration of an individual's response to this drug cannot be predicted in advance, but if it fails there are plenty of other options. It has never been favored in the USA as a monotherapy, but is widely used this way in some other countries... not sure about Sweden.

I have chosen it as an initial treatment protocol.

Ahk1 profile image
Ahk1 in reply to noahware

Thanks, noahware. I am not sure why my MO didn’t suggest it and when I brought it up, he didn’t agree on using it. My question to you is please, if casodex fails, can you start with the others? Does starting with casodex minimize the effectiveness of the others when time comes to use them?

Thanks in advance

noahware profile image
noahware in reply to Ahk1

It would actually be surprising if your MO did suggest it. The fact is, Casodex was never approved by the FDA as a monotherapy at 150 mg, as it was in MANY other countries. Its official on-label use, in the US, is only as an add-on drug at 50 mg, even though it is still frequently prescribed off-label at 100 mg or 150 mg.

So in the US, Casodex as a monotherapy has never been the mainstream "standard of care" and never will be. It is far easier to just put men on Lupron forever with a set-it-and-forget-it approach until that standard of care fails, and then move on to other drugs as needed.

I do not know anything that suggests Casodex could present a problem after dropping it switching to other meds. There appears to be very little compelling evidence that suggests it is a problem for men with a limited burden of mets (like myself) as an initial therapy, before switching to other meds. But if seriously considering it, that might make a worthwhile new thread to start.

Based on at least one study, it could be a problem for men with more advanced cancer or with a very heavy burden of symptomatic tumors or mets. So it certainly would not be an initial treatment for later stage advanced cancers with pain and other symptoms.

Ahk1 profile image
Ahk1 in reply to noahware

Thank you very much for your thoughts. I do appreciate it.

tasmanien13 profile image
tasmanien13 in reply to noahware

Can I ask you about PSA level, mets and Gleason? For how long have you been taking Casodex? Thanks!!

noahware profile image
noahware in reply to tasmanien13

Just started taking it, so nothing to report yet (either good or bad).

PSA 20, G 3+4, a few spinal mets, diagnosed about a year ago at age 59.

To be clear, I am not claiming this to be the best option of all, so far as efficacy, because the newer antiandrogens are better (even though not given as monotherapy). Just feel it is best for ME at this time given potential side effects of other meds and/or radiation. If I start presenting with any pain or symptoms, that could change!

tasmanien13 profile image
tasmanien13 in reply to noahware

I understand, I think THE Numbers of mets Will decide if this is an option. But I really hope our doc Will suggest it!

Valuable information, thanks! Did you choose Casodex for a special reason, previous heart issues? I have read that members here got several good years on this monotherapy, Magnus is one of them, but is it sufficient when you have mets? Can you combine it with chemo?

Thank you in advance and best wishes

noahware profile image
noahware in reply to tasmanien13

I chose Casodex for exactly the reasons Magnus mentioned: all of these drugs are doing the same thing in different ways, so why start with the more potent ones when you can get months or years with casodex and then move on? Casodex is less potent (=fewer harmful side effects) but that does not necessarily mean it is less effective during the period of its use.

The fact is, Casodex was never approved by the FDA as a monotherapy at 150 mg., as it was in MANY other countries. Its official on-label use, in the US, is only as an add-on drug at 50 mg, even though it is still frequently prescribed off-label at 100 mg or 150 mg.

So in the US, Casodex as a monotherapy has never been the mainstream "standard of care" and never will be. It is far easier to just put men on Lupron forever with a set-it-and-forget-it approach until that standard of care fails, and then move on to other drugs as needed.

I do not know anything about combining it with chemo, and although it is NOT recommended for men with mets there appears to be very little compelling evidence that suggests it is a problem for men with a limited burden of mets (like myself). Based on at least one study, it could be a problem for men with more advanced cancer or with a very heavy burden of symptomatic tumors or mets.

tasmanien13 profile image
tasmanien13 in reply to noahware

Thank you noahware, this really makes sense to me. So for oligometastatic pca you could start out with Casodex, and maybe also it is easier on the heart?

All the best!

noahware profile image
noahware in reply to tasmanien13

That is my understanding, although the evidence on the heart is less clear to me. It does seem clear that there should be less of an effect on bones (loss of density) and less impact on metabolism (metabolic disorder).

The Casodex does have potential side effects that can include hot flashes and gynecomastia (as well as liver problems). These can be partly mitigated with Tamoxifen, but that too has plenty of controversy, though seems mostly well-tolerated.

The bottom line is, your levels of estrogen are not lowered with Casodex as they are with ADT, so the side effects of estrogen depletion are eased.

tasmanien13 profile image
tasmanien13 in reply to noahware

Ok, I Will definitely discuss this when meeting doc. Thanks a lot for sharing your knowledge!

You are right that Firmagon may have fewer coronary side effects than Zoladex:

ncbi.nlm.nih.gov/pubmed/311...

He is taking a witches brew of drugs. Calling those drugs "supplements" doesn't negate that he is taking many drugs of unknown efficacy, safety, interactions, and cardiovascular effects. Some are known to affect biomarkers. They probably do nothing, but they undoubtedly help you feel that you are doing something to take control. Make sure his oncologist and his cardiologist know that you are self-medicating.

Thank you, TA! What supplements do you take, if any? You are so right, I get the feeling of doing something by ordering the supplements, but I need to find out what really could be worth trying. Is Firmagon suitable for lymph node mets ? I guess all ADT are, but often given in a special order?

Best wishes!

Yes, Firmagon is suitable for lymph node metastases.

I don't take any supplements, although I did at first. I have drawers full of them. So I do understand the psychological need to do it.

Recommendations you see promoted on sites like this are based on "evidence" that no one should be using to make treatment decisions. I'm not sure there will ever be real evidence - a large, randomized clinical trial. The only supplement that has at least had a small randomized trial is sulforaphane, but even there, there are suggestions it may not be good with radiation.

Keep in mind that the way the body kills aberrant cells is via oxidation, so taking "antioxidants" or "free radical absorbers" may interfere with the natural cancer control mechanisms.

Also keep in mind that inflammation is part of the process that enlists the immune system to kill invaders. Too much inflammation is bad, but too little inflammation is bad too. In fact, one of the mechanisms that prostate cancer uses to evade immune response is to cause the secretion of anti-inflammatory cytokines.

Taking drugs that interfere with those processes without clinical evidence of net benefit may be counterproductive. I honestly do not know if any of them are beneficial or harmful - no one knows (in spite of what you may have read on the internet). I do think it's important to acknowledge the risks.

Many thanks for this insightful answer!

Check my Posts, I think I have one on the Vantas Implant--which IMO, provides the least side effects--others have written on it--not many---Search Vantas Implant--and you may find enough info----I always suggest Casodex with it[Which is in my opinion only, I am not a Doctor]--unless you have serious Mets to Nodes, or Bone, then other protocols would or may be better.

Nalakrats

Hi Nalakrats and thanks for replying! I will suggest Vantas and Casodex when we meet our doctor, but here in Sweden we have standardized care that doctors tend to rely very much on. Can I ask what supplements you have added to your regimen?

All the best!

Go to Google or even you tube to see information on Dr. Geo Espinoza he is an Intergrative Urologist at NYU in New York he can professionally go over these things has a book out on Amazon called Thrive and does calls at a price of course Zoom or Skype I would think.

Thanks bucsman, I will do look for this!

My best wishes

"He also takes several supplements; berberine, quercetin, fenbendazole, curcumin, IP6, betaglucans, vit. K2 and broccoli sprouts."

Sure beats my two scoops of chocolate chip ice cream.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 05/11/2020 6:11 PM DST

tasmanien13 profile image
tasmanien13 in reply to j-o-h-n

So No supplements for you, John? My husband supplements with icecream when he thinks I am not looking. So he feels fine, it is My anxiety that ruins so much here...

j-o-h-n profile image
j-o-h-n in reply to tasmanien13

That's correct no supplements.

Chocolate chip ice cream (two scoops) <===<<< Good for anxiety....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/12/2020 12:19 PM DST

I Will immediately go to get some!

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