Hi people, just recently we have all been discussing the prescribed dose of Zytiga and Prednisone, you may recall that a couple of times I said that I would keep you informed of my experiment over the past three months with reducing the dose of Zytiga from 1000 mg each day down to 500 mg each day, taken with breakfast of a fried egg on toast and a yogurt, oh and coffee
The Prednisone I take every other day, a dose of 10 mg about an hour before breakfast.
I had a P.S.A. on Wenesday, July 3rd the previous test was taken in April. The result is a fall from 0.527 down to 0.215. 50% approx.
My reason for doing this experiment is that I, like you, am a human being, my body is not a profit making machine for a pharma company and I respect my creator.
The secondary effects of these drugs on our bodies is barely acknowledged by the medical or pharmacutical sector, but the secondary effects are too dangerous for us poor " Mice " to ignore.
On wednesday I also had the 6 monthly injection, the one that gives us all those aches and pains and flu like symptoms, as I write this on Friday, I am so far okay.
I guess when I have finished this post I won't be ;-D
In the past, probably like you I have been hanging on and trying to crawl out of the abyss of pain, sickness, upset stomach, where is my brain, stuttering, absolute fatigue, vomit, sweats, Budha belly and bee stings ( boob's ) and the rest.
I just wanted to encourage you guy's out there, who like me are willing to try to take back your life and to steer it again. There is nothing at the base of this post that you have to answer to prove that you are not a robot and I refuse to be treated like one.
One last thing, I am not a " Forum " type of person, but you all changed my mind, I love the humour, the honesty and the knowledge that is shared amongst us all, many of you have more knowledge than my Urologist, enough said :D.
I wish you all a good day and hope and pray that you all keep on fighting.
Best regards from " Phil who didn't take the pill ".
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Lettuce231
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Many of the things you wrote..I was also thinking but could not say loud. I have not taken 1000 Mg of Zytiga and have been taking only 500 mg a day until I see PSA result next time.
Lupron does make me tired and cause some vague joint pains.
Lettuce, the medical Industrial complex is a formidable force in US just like the military Industrial complex.
We need to defend ourselves from all profiteering forces and be our own advocates.
Yes...this is a great forum because people have freedom of expression here and can say fearlessly what they are thinking. Good Luck.
Hello Tall Allen, I have read the post and thank you for the link. It's very difficult for us all when there is so much information for us to digest. Fortunately my blood pressure is bang on and the pottasium levels are within the norm.
I intend to continue with the dosages I am taking now for the next 4 months, then we can all catch up again.
Thanks for the blog link. This is a very interesting test series. On the face of it, Dexamethasone 0.5mg x 4 per day is a better option than Prednisone 5mg x 2, in spite of slightly more adverse side effects. 88% more than halved their PSA, which is impressive. My guess is that Prednisone suppresses the immune system more, and that is what makes most of the difference. Perhaps what this really points to is the need of a more balanced replacement regimen, which would be a more complex blend (rather than blunt choices which are known to fall short and have potentially serious side effects). Dexamethasone does not seem to be readily available in 0.5mg tablet form in some countries. I am puzzled by the final paragraph:
"There was tremendous individual variation. It seems prudent to start with the prescribed dose (P5 bid) and monitor body changes, or to start at the lower dose (P5 qd) and to monitor blood pressure and potassium levels."
Is this is a typo?
Some speculation: Since these cortisones trash the body's natural immune system (and thus impair the ability to kill cancer cells) we have a balancing act here. What would happen if there was an intermittent "cortisone holiday" of (say) 7 days to get some extra killing going on?
Keep up your good work - I appreciate your many quality contributions to this forum.
Thanks - my mistake. After 37 years associated with this business, I have never seen QD used in my part of the world. It is just D for Daily. I think if a doctor used it here, the patient would get a quadruple dose! Lesson - never guess. Right to check.
I like the second option given in the article..i.e. start 5 mg predni a day and closely monitor blood pressure and serum potassium level. I keep a daily blood pressure chart and plan to get serum potassium level checked every 30 days.
You have given me a lot to consider. I may be starting Zytiga as soon as this fall if my PSA continues its current trajectory. Thanks for posting this.
Very interesting thoughts. Thank you for sharing. My observation since the late 60's and early 70's when I was a student and enjoyed the occasional mind altering experience, is that people of different size and weight need different dosage to achieve the same affect. I am 6'5" and the same amount of alcohol or "whatever" never reacted the same with me as it did with a 5' 90 pound woman. My theory is that there are many things that need to be accounted for in calculating an ideal dosage. Some Docs agree but no one has an appetite for calculating how to determine optimal amounts of medication to treat humans who have many variables in constitution. I don't understand why systemic pharmaceuticals are not evaluated more precicesly from patient to patient. Your experiment with "one size doesn't fit all" makes so much sense to me. This is not science but seems intuitively logical. I am a little over 60 days into Firmagon and will finish 30 days of Zytiga next Sunday. I am tolerating treatment pretty well, so far, with PSA and Alkaline phosphatase reducing. I don't trust good news yet and i am watching closely and feel pretty good all things considered. I am not leaving Firmagon to go to Lupron despite the Doctors suggesting it. Why argue with success is my theory. They say it makes no difference so, why fix it if it anin't broke.
Thank you for your contribution, I agree with you too, when you whitness the effects of certain substances, on different people, size wise, weight wise, maybe even the rate at which chemicals leave an individuals body over a period of time and how some people retain those chemicals much longer than others, we are not all the same.
Have a look at the click on link that Shanti1 replied to me with.
in which Zytiga was thought be be just as effective when a quarter of the dose was taken with a food containing fat in the morning? The article backs up up your expiriment. It was a small group, so it is hard to draw a strong conclusion and there may be some risk to lowering the dose, but perhaps that is worth it for quality of life gained from a lower dose? We actually brought this article to our oncologist when it came out because my husband had very bad side-effects with zytiga. That opened the door to a conversation about taking a break from zytiga, which is what he did. He is one year off the medication with PSA <0.006! For us, the risk of that decision has been worth the gain in quality of life. Anyhow, thanks for posting, if he hadn't come off the zytiga, he probably would have tried lowering the dose.
Fantastic news for you and your husband, that's so encouraging for us all, thank you sharing that with us ;-D
Yes you are correct in your guess, I was just about to go onto Zytiga, our youngest daughter and I were sitting in the garden looking at the side effects of the drug, then we came upon the article.
My PSA was on the rise again and things looked gloomy. I ran with the full dose for about 8 months and then decided to try reducing it, it's fascinating to read that it is already acknowledged that medication taken with food can be more effective, yet more often we are not advised of that conclusion.
We all hope that your husband remains at that level, but if he has a problem, he might now have another weapon in his arsenal.
I let my 5'0" 122 lbs wife try all my meds first... If she survives then I just double the dosage cause I'm 6'1" 240 lbs. So far it's working.... (fortunately she's never had a prostate).
BTW "Honeymoon Salad" Lettuce alone without dressing....(I just can't stop my silliness).
Thanks for sharing. I agree, we all are different and thus the meds we take reacts differently among us.
The concept is simple: we don't know why we are the chosen one(movie cliche here...lol), we now have very high regards for our dear lives and those close to us. That's our reality, so we are doing whatever we can to increase our cherished life. Cheerios all brothers and like how dear Lettuce231 starts this thread, Eat, Drink and Be Merry lads!
My best regards to all. Take good care and laugh as much as you can...sorry J-o-h-n to steal a little thunder from you
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