My father (67) has six month on Leuprolide+Bicalutamide, widespread bone mets. He wasnt fit for chemo and there is no Abiraterone or Enzalutamide in Venezuela, but he had a good response to ADT, and his last PSA came to 0,62 from 36 before treatment in march (but as high as 126 last december). He feels very good now, and gain some weight.
So PSA have come down but his Testosterone level, after two Leuprolide shot (the third was yesterday) is still over 300. His MO is a little surprised with this "unusual" situation with very good response without castration levels. Since so far probably Bicalutamide is doing 99% of the job, but she knows that we need to achieve castration levels soon, we put these options over the table:
A) Keep the course of Leuprolide and increase Bicalutamide to 150 MG until castration levels.
B) Change Leuprolide for any other LHRH agonist like Triptorelin or Goserelin (this wouldnt be economically viable, since it has to be paid from our empty pocket because public system only have Leuprolide).
C) Start Abiraterone half dose (500 MG) with low-fat food, since I have received some donations from Ireland and USA (Thanks to people from this website).
So far, she was reluctant to start Abiraterone until I guarantee enough stock or resources to keep treatment during at least two years (There is no Abiraterone available or affordable in Venezuela); but now, I have these donated bottles for at least one year, so she agree to start in octuber.
I am nervous to start Abiraterone because he had a very good response to Leuprolide/Bicalutamide, with no SE´s (I know T is still normal), and he is feeling great. I am also nervous about liver issues or Hypertension, Hipokalemia.... And finally,of course, I am nervous not to be able to find enough Abiraterone in the future in case he need it (hope so).
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olloreda
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Well, that is a question I have made myself. His T was around 700-800, so in some ways we know it has "something" that work, but it is not strong enough. Another strategy was to change to one-month shot, to see if it was better. Here 3-months is 11.25 and 1-month is 3.75.
Almost 100% of people with mPCA in Venezuela are receiving those injections. So far, any of the doctors have told about other similar case, so I guess it is working for almost everybody except my father. In fact, I have a donated Triptorelin shot, and his MO prefered to keep trying with the Leuprolide.
What do you think about adding Abiraterone after that good response to Bicalutamide?
Maybe the leuprolide was watered down? There is a Lupron shortage in the US now, so perhaps it was adulterated?
If he has to, he can continue with 150 mg/day of bicalutamide alone. Abiraterone is always given together with a GnRH agonist or antagonist. There was a small study showing it can work on its own, but it's not a big enough study to decide upon.
The idea is to achieve castration levels; so we are going to see if this last shot finally take down his Testosterone.
His MO is not thinking in monotherapy with Bicalutamide, but to increase to 150MG until we find a way to get castration levels (even with surgical ways, like our last resort); but in case we need, I would rather find a way to make Triptorelin or Goserelin affordable for us (it could be for his next shot in december).
The idea with Abiraterone is to take advantadge of its mechanism to take down Testosterone, so we can "push" or "help" Leuprolide.
Of course, since he is not castrated, we know it could be a flare on PSA when changing from Bicalutamide to Abiraterone.
I have been on the monthly Luprolide shots for six months. Eligard 7.5mg per month.
My PSA came down from 300 to 0.2 and my T has been below detection for at least 4 months of the six. I have also been taking Zytiga 1000mg and 5mg Prednisone.
Zytiga costs $4000 per month, fortunately my insurance is covering the costs.
Bicalutamine is doing a surprisingly good job for him, but it has very bad side effects that he will be getting. So you need to get his T down urgently.
Protocols in USA are different from Europe and LatinAmerica. Most countries -and more people- in the world usually follow 3-month 11.25 and 1-month 3.75 protocols for Leuprolide treament. So the amount is not the problem.
Zytiga side effects are usually stronger than Bicalutamide. Actually one of the reasons to keep him on Bicalutamide was less SE. BUt yes, we know we need to get his T down urgently, so Abiraterone is a good option.
You also have a very good response to ADT and zytiga.
I did. First problem is that we would have to pay for it, since we dont follow FDA regulations in Venezuela, and here that is the recommended dose (like I said, it is in most countries in the world). So it would be easier to just switch to other similar med. Anyway, these next months we are going to monitor his T, and take a decision about that.
She (and I, and of course my father) prefers to keep the hormonal way -not chemo-, since he had a great response so far. I forgot to write down surgical castration like an option, because it is our last resort. But of course you are right, that is an option we have.
He has bone mets on every vertebra, right femur, pelvis, ribs and right shoulder; so, yes, I would like to intensify hsi treatment; but he is very good so far and some times it is hard to think about more toxic treatments while you feel ok.
I understand, but with so many bone metastases chemo could be a good choice now that he is asymptomatic. By the way, I believe, abiraterone should not cause a testosterone flair since blocks directly all sources of testosterone.
Yes, If I were him, I would probably go with chemo; but I think he is more with quality so far, because he is still working. So if we get some years with Abiraterone, he could think about that later, with less responsabilities in his life.
And, yes, I didnt meant a T-Flare, but a PSA-Flare, because he is not castrated and we are going to cut Bicalutamide. I guess his body needs some days to adjust to the new regime.
Anyway, I dont stop thinking about "winning" some time with Bicalutamide instead of jumping to Abiraterone.
Then consider to start abiraterone ASAP since these new anti androgens offer a survival benefit. If the numerous bone metastases progress, the pain could start. If you run out of abi you can always continue with casodex.
He had pain in his femur at the beggining. He was radiated. So far, no more pain -or not an issue-.
I am aware of Abiraterone survival benefit....but, always worry about SE. BUt you are right, if we run out or is not tolerable for him, we can switch back.
I was told the same thing . Glad I did orch in 2017 ..I’m still on a defunct test adt drug that seems to be halting t from the adrenal for me...Whoo pie!Life without T is charming !😂🌵
His BMI was below normal and some of his blood levels wasnt in the best Moment. Thenorher reason is that my father didnt want to. He is better now, but since he had a great response to hormonal treatment it seems there is no reason to go for chemo but for an intensification of hormonal way (Abiraterone or Enzalutamida, for example).
You may have enough abiraterone now for two years (ignoring expiration dates)
I was on A (abiraterone) for two years, now on vacation for 4 months. Started on 1000 mg in fasted state, but experienced severe leg cramps and some stomach cramping after taking it - tummy troubles relieved to some extent by drinking lots of water w/ A.
After research learned that the amount in the blood is highly fat dependent - one study curiously used a McDonald's big breakfast and found more than 10 X increase in A in blood with a high fat meal but voiced ethical qualms about suggesting a reduced A dose and Big Breakfast for a long time.
For over a year I took 250 mg A daily w/ a healthy (not low fat) lunch. Not only did I enjoy the meal more, the leg cramps went away and there was -0- cramping. Frequent blood tests showed castration levels of T and LT 0.1 PSA.
In my case I had excellent insurance so cost was a minor concern, but the better QOL was important.
Was probably getting significant swings in A (there was nothing scientific about lunch menu or portion control) but was comfortable trying this as the early studies on A had doses ranging from 250 to 2000 mg. The 1/2 life in the body is about a day but it seems to take days to act and days to go away - after months of "vacation" my T is barely creeping up.
This is just my personal experience, am not an md. I will repeat the approach (250 mg at lunch) when I need to resume treatment after "vacation".
Caution on prednisone - you still need the full amount of prednisone, as if you were taking 1000 mg in fasted state - my UO at first cut my prednisone to 1/4th of original dose when I went to 250 mg but after a month or two could walk only 6 or 7 minutes. Increasing prednisone to closer to the original level let me resume normal activities - now walk 3 or 4 k daily.
The A on hand almost certainly will be past its nominal experiation date before 2 years is up, If it was me I'd use it until some new stocks might be obtained.
According to the packaging on my Zytiga, it seems temperature sensitive, perhas store it in the fridge?
Igor, interesting that your T does not come back after ADT. This part of the reason I am going to cut the balls off. After extended ADT testicles will not come back to life.
Olloreda if you are worried about costs, the Injections cost about $400 per month.
3-months injection cost about 250-300 USD here on private; but Leuprolide is free for everybody; so surgical castration is an option only if we have to switch to another injection and we cannot find enoug money to keep it in long time.
I dont know the cost of Surgical castration, but it must be at least equivalent to two or three years of treatment.
Well, actually surgery should be free on public heatlh system, but since we are blocked by US and Covid19 situation, our system is not workin properly, so it is not easy to do it, but there is a chance. We will see if the time comes..
Yes. Actually some of the bottles are expired from june or july 2020; but they will work anyway. Better that tan nothig.
We cannot follow 250 MG protocol since some bottles come with 500 MG tablets and you cannot split them. So we have to follow 500 MG.
His MO recommend to start with 10 MG of Prednisone. I am going to ask her to give him 5 MG since he is hormone-sensitive. But I think some doctors prefer 10 MG to control myneralcorticoid problems.
I used up all of my 500 mg pills by crudely splitting. On my pills there was no anteric coating. The A seems not to be absorb in the stomach and the role of any fat is to dissolve it in intestines. My understanding and approach may be totally in error, but had some inventory of the 500 mg to use up which I did.
Interesting! We just decided not to cut them, but didnt talk about. I dont know if they can be cut, and more important, if both parts are going to be equivalent to 250 MG, since. But I will research about it.
All medications in pill or capsule form are at full potency for at least we me year beyond expiration date, and probably considerably longer. Longer still ( years) if stored in a refrigerator. Research by The Medical Letter some time back.
For patients who develop hepatotoxicity during treatment, hold ZYTIGA until recovery. ... disease. Control hypertension and correct hypokalemia before treatment. ... Store ZYTIGA at room temperature between 68°F to 77°F (20°C to 25°C).
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He will need to be on ADT for life at his stage. Surgical castration is a good solution for him. Chosen by many just to be free of the injections. The leuprolide there is not to be trusted with one’s life.
If dutasteride or finasteride is available there ( often prescribed for urinary symptoms) it is a good consideration to add to bicalutamide while his T level is not castrate. Bicalutamide leaves T higher and the dutasteride stops conversion to the much more potent (and thus detrimental) DHT. Once he is at castrate T levels this is no longer needed.
Yes the Abiraterone at 250 mg plus prednisone will be a therapeutic dose when taken with a moderate fat breakfast. And it will continue to be potent well past expiration dates especially if kept in the fridge.
Remember mine is just one more (educated) opinion on this site for your and his consideration and discussion with your treating physicians. Good luck.
You are the fantastic loving child .. with you on his side he will be ok .. I don’t know the tech answer for him . Others will chime in . I think trials are great . Ive been on one myself for over five years . No side effects is great . Keep him active daily to keep oxygen up . Weight bearing exercise to help stave off osteo and cardio issues from adt . Quality time together and love are the best medicines . Buenas Suerte! To your family🙏
Gracias!! We are trying to spend time together and not overthinking. He lives with my 7 years old sister who love him and take care of him just like I do (I tell her what to do and she help me). He has been very active, at least walking a lot three times a week. So far so good. Hope even better times are coming...
A seven year old girl loving him is marvelous . My dad had this also . It was tough to see him diminished so greatly . Compassion is the good medicine ..take care
Hi Oloreda, I have taken Bicalutamide myself (under its Casodex name) and this part of your message caught my attention where you say "Keep the course of Leuprolide and increase Bicalutamide to 150 MG until castration levels.". Your dad's oncologist made the same mistake mine did by thinking that Bicalutamide should be increased because he thinks the testosterone is not low enough. Bicalutamide does not lower the testosterone at all, in fact it can increase it a little even. What Bicalutamide does is that it blocks the testosterone receptors in the cells so that they can't use it even though it is there. So upping the Bicalutamide serves no purpose in his case since his PSA was low. In fact in my case it sent me to the hospital because I've developed shortness of breath and lost about 20 lbs I could not afford to lose being very thin already. I was ok with Bicalutamide 50mg. Got side-effects at 100mg but could somewhat still function at that does though even at 100mg I was losing weight day after day but at 150mg it was literally killing me.
Hi Mascouche! Thanks for your answer...The purpose of increasing Bicalutamide to 150 MG is not to achieve castration levels, of course; in the past, and still today in some countries in Europe, Bicalutamide 150 MG is accepted as monotherapy for MPCA, so you can decide between castration and Bicalutamide as first line meds, then, after failure, you add the other.
Since we didnt achieve castration levels, Bicalutamide 150 MG was an option.
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