First blood tests since starting Abi. - Advanced Prostate...

Advanced Prostate Cancer

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First blood tests since starting Abi.

Professorgary profile image
32 Replies

Yesterday I saw the MO and when he entered the room he had a bid smile. My Psa that had climbed from 6.6 in March to 19.14 on Sept. 5 had dropped to 4.74 yesterday. ALP was 141 Sept 5 and down to 114 yesterday. I started taking low dose Abi on Sept 9 so total treatment was 24 days. To say he was happy was an understatement. We went over my breakfast and he wanted to make sure I was not using whole milk on my cereal which I wasn’t. All other numbers were normal except WBC which was slightly elevated. He said the prednisone was responsible, most likely. He also has me on 5 mg prednisone once daily instead of two times daily. Xgeva is the next step. I get a Dex scan in Dec. I have a great MO and Urologist and I thank God for them and that these treatments are available. God Bless.

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Professorgary
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Tall_Allen profile image
Tall_Allen

But what is the advantage to you of taking an indeterminate dose?

Professorgary profile image
Professorgary in reply toTall_Allen

$105 a month.

Tall_Allen profile image
Tall_Allen in reply toProfessorgary

You can get a full dose without guesswork for $122/mo. here:

costplusdrugs.com/medicatio...

Professorgary profile image
Professorgary in reply toTall_Allen

If you are talking about mark cuban that is where I got mine however there is a$5 shipping and another $5 pharmacy processing fee. I’ll get next batch for $139 through Goodrx locally. I don’t consider it guesswork when I eat the same breakfast daily. Honestly I don’t think my MO has doubts about the efficacy but if I eat a high fat breakfast I will get a higher dose than desired which would probably raise liver enzymes. That is why he wanted to make sure I used low fat milk if I was going to use milk. I can understand a Dr. being hesitant because what some guys call breakfast is bacon, eggs and buttered toast. BTW, egg whites allowed, yolks are not and no granola type cereal because of the nuts and seeds. Not for everybody that is for sure but with tests results received yesterday I’ll continue for now.

HikerWife profile image
HikerWife in reply toTall_Allen

Tall_Allen, I have enormous respect for you and you do a lot of good here. But I wish you'd stop beating the low-dose-is-bad horse re abiraterone. Both our local oncologist (head of department) in RI and Dr. Sylvan Baca at Dana Farber in Boston are enthusiastically on board with the low-dose regimen. They feel that the only reason the high-dose on an empty stomach protocol is "official" is b/c it was done in the clinical trials. This was not an economic choice for us, and you need to stop asserting that cost is the only legitimate reason to choose this protocol. My husband has had a great response to the low dose w/ lowfat breakfast protocol, with no nausea and not one negative side effect requiring dosage adjustment. I feel you are unnecessarily creating stress for patients. This is a widely accepted practice now. It works, and it's easier on the body.

dhccpa profile image
dhccpa in reply toHikerWife

Based on everything I've read, I agree with you. And you put it very well.

I'm not on AA just yet, but a bad blood test could change that quickly.

Tall_Allen profile image
Tall_Allen in reply todhccpa

See reply to HikerWife.

Tall_Allen profile image
Tall_Allen in reply toHikerWife

I can only repeat that the only reason to take a lower dose with meals is cost, since that is the only reason. It is not a widely accepted practice - why do you imagine it is? I've talked to a lot more than two doctors about this.

If you think about it for a second, you will understand why most oncologists now prescribe the full dose without food. All that matters bor both effectiveness and side effects is the biologically available dose. If a man is not getting a sufficient biologically available dose, he will have fewer side effects, but he will not be getting the optimum amount of abiraterone (and its active metabolites) in his bloodstream, which is the only way it can be effective.

There are two ways to get the optimal biologically available dose.

(1) Take 1000 mg/day with no food in the gut. Without fat in the gut, much of the dose is wasted and is pooped out. A lot of the abiraterone is not absorbed and is not biologically available. But the amount absorbed is consistant for everybody and for every time it is taken.

(2) Take 250 mg or 500 mg/day with high fat or low fat meals, respectively. Fat increases absorption through the gut walls. The biologically available amount will vary across individuals, and even from one time to the next within the same man because the amount of fat in the gut makes a difference, and the microbiome will affect absorption. It is impossible to know for sure if the biologically available dose is optimal without a lab test for abiraterone metabolites in the blood every day (which is infeasible).

If your husband is having lower GI side effects, you should worry that he is not getting the optimal biologically available dose. PSA will decrease at first anyway, but progression will occur more quickly. It may be that side effects demand that he reduce his dose, but that is a trade-off he shoulld be aware of. I hope you will discuss this with his oncologist.

Professorgary profile image
Professorgary in reply toTall_Allen

Is there a clinical trial or study that backs up your claim or progression occuring more quickly. The reason I ask is because the one that I read said Psa decrease was slightly more in the low dose arm of the study but time to progression was the same. It did however state that the standard dose was a little more consistent in the blood stream. As I said this may not be for everyone but it fits me well and I will proceed cautiously. Now as far as Doctors approving this method you may be right in the US but go to a country like India and that goes up to 90%. The reason however is cost driven. I am saving 105 dollars a month. If I am on Abi for three years that amounts to almost $ 3800. According to some studies a 30% drop in Psa at 4 weeks is good and a 50 % predicts an even better outcome. Mine is 75% in 25 days so due to that fact and the fact my other blood tests and ok I will continue. I may have started low dose Abi to save some money but believe me when I say if the numbers would not have been good I would have switched to standard dose.

Tall_Allen profile image
Tall_Allen in reply toProfessorgary

Yes, of course there is data behind it. Both STAMPEDE and LATITUDE established 1000 mg abiraterone +ADT as the standard of care because it slowed progression compared to ADT alone.

onlinelibrary.wiley.com/doi...

thelancet.com/action/showPd...

While it's true that good PSA response is prognostic, one can have a good PSA response initially and still put oneself at risk for faster progression. Even among patients in STAMPEDE, 37% of those using ADT alone were progression-free at 5 years. Like you, they would have thought they were doing just fine. However, over time, they were 1.7 times more likely to progress.

Professorgary profile image
Professorgary in reply toTall_Allen

I think you understood my question. Do you have clinical proof via clinical studies that patients taking low dose abiraterone with a low fat breakfast progress faster than those taking standard dose when all are also on adt? I only saw one study to this effect and they both progressed equally.

Tall_Allen profile image
Tall_Allen in reply toProfessorgary

The problem with the studies you cite is that they show averages and not the variance, which is the problem. Only the biologically available dose matters, and there is tremendous variance with food. This is why it was decided prescribe abiraterone without food.

As you can see in the following study, the variance in absorbed dose with foods is larger than the dose itself.

accp1.onlinelibrary.wiley.c...

This trial proved that "High inter-patient variability (> 50%) was found for all pharmacokinetic parameters under both intake conditions " and concluded that "a bioequivalent lower dose of abiraterone taken with food could not be established in our study."

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

Here is a good critique of the evidence:

ascopubs.org/doi/10.1200/JC...

Interest in dose with food has faded since then because of low-cost generics. If cost is no longer an issue, why take the chance that you are underdosing or overdosing?

Professorgary profile image
Professorgary in reply toTall_Allen

So you are saying the biological available dose is more important than results?

Tall_Allen profile image
Tall_Allen in reply toProfessorgary

I am saying that the only way to know if you are optimizing "results" is to follow the protocol in the randomized clinical trial. Otherwise you are just engaging in wishful thinking that your eventual "results" (i.e., survival) will be as good. Short-term PSA tells you nothing other than you are getting a short-term PSA response- you can get that even without abi, so you may be deluding yourself. Is it worth it to take that chance for $30/month?

Food with abi can increase the biologically available dose by an amount that is unknowable for any individual. You are never guaranteed to have the same results as the median in the trials (STAMPEDE and LATITUDE), but at least by following that protocol, you know what the median "result" is.

Professorgary profile image
Professorgary in reply toTall_Allen

Well it’s obvious you have never had stage 4 that has spread to other parts of the body or you would know that wishful thinking is an everyday thing for us guys as well as our loved ones.

Tall_Allen profile image
Tall_Allen in reply toProfessorgary

I have had two parents die of stage IV cancers. I'm well acquainted with magical thinking, but it serves no real purpose and can do harm, so it is something for all of us to be wary of.

dhccpa profile image
dhccpa in reply toTall_Allen

Thanks. Yes, I've seen your take on this at least a dozen times. I don't know how widespread using low dose is but based on the posts it seems to be gaining ground. I guess the docs can battle it out like they do on all methods. Some doctors here in Daytona use it. If low dose has made it here, I suspect it's practically everywhere.

I understand your take, but it assumes that everyone absorbs at the same rate on an empty stomach, which is probably unlikely.

Tall_Allen profile image
Tall_Allen in reply todhccpa

It is still the standard of care to take 1000 mg fasting. Your suspicions and a few anecdotes here do not constitute widespread change in practice.

The dose-finding trial of abiraterone found that it was absorbed uniformly on an empty stomach. Your imaginings don't change facts.

dhccpa profile image
dhccpa in reply toTall_Allen

Docs are going to check PSA and T after prescribing abi, so that would tell the tale, it seems.

Tall_Allen profile image
Tall_Allen in reply todhccpa

No, it does not "tell the tale." In the STAMPEDE trial of abi+ADT vs ADT, 37% of those using ADT alone were progression-free at 5 years. Like you, relying on low PSA, they would have thought they were doing just fine. However, over time, they were 1.7 times more likely to progress and die of their prostate cancer.

dhccpa profile image
dhccpa in reply toTall_Allen

You misunderstood. I have regular scans as well.

Tall_Allen profile image
Tall_Allen in reply todhccpa

You have to compare your progression to what would have happened without the trial abi dose. The only way to know if you are optimizing your abi intake is to rely on randomized clinical trial data. How else can you know if you are riding a better or a worse survival curve?

dhccpa profile image
dhccpa in reply toTall_Allen

I understand your point of view.And beyond that, I agree with your point above that those who are progression-free are only that until they actually progress.

Tall_Allen profile image
Tall_Allen in reply todhccpa

I should mention that "progression" as defined in these trials means all indicators of progression, including PSA, castration-resistance, scans, and, of course, death from PCa.

dhccpa profile image
dhccpa in reply toTall_Allen

I agree with that definition, particularly if used in a consistent manner.

JohnInTheMiddle profile image
JohnInTheMiddle

May I ask why on earth not putting whole milk on your cereal in the morning is important? Interference with a test or a med? Something about fat?I'm on Abiraterone and don't eat for a hour after taking it. Never heard anything about whole milk. (But not to worry though because I don't drink milk anyway, although I do eat cheese.)

Professorgary profile image
Professorgary in reply toJohnInTheMiddle

The paper I have that gives examples limits milk to 1% for low dose Abi. I take 250 mg with a 300 to 350 low fat breakfast or within 30 minutes of eating. My cereal is 190 calories, banana is 105 and non dairy creamer is 25. It works for me because this is and has been my regular breakfast. I have not used milk on cereal since a kid. It isn’t for everyone but as luck would have it my regular breakfast fits properly.

jptss profile image
jptss

funny i pay cash 3400 a month in Canada i had a very long talk with the cancer center pharmacy she says the same thing as tall Allen why would i cut my dose to save money, i asked about casteration she said im already there and if i did that i would still have to take shot im 62 no sex in 18 months but im alive thats the goal.I have alot of respect for my elders but man all i hear is sex and money makes my wife and i scratch are heads lol.

dhccpa profile image
dhccpa in reply tojptss

Each doc is monitoring PSA and T from the moment a patient starts AA so you'll know quickly if low dose isn't working.

Professorgary profile image
Professorgary in reply todhccpa

I knew within days my T had fallen. Through ADT alone my heat flashes were very mild and only 20 seconds to a minute with my T at 13. Within a few days on Abi they were longer, more often and I now sweat when I have them. Other than that I feel great. Praise the Lord.

dhccpa profile image
dhccpa in reply tojptss

Why is abi so expen$ive there?

PCaWarrior profile image
PCaWarrior

Interesting discussion about variability in dosing.

Let's say we take 1000 mg of Zytiga on an empty stomach.

Now, do we think that a man with 100 lbs of lean mass needs the same dose as a man with 200 lbs of lean mass? My MO doesn't think so. The FDA doesn't appear to think so because they dose drugs in many other fields to the person's weight and age.

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