Hi people, some of you may remember my previous post, I don't want to bore you again. But a quick recap to follow :-
I have been on Zytiga and prednisone for about twelve months now, also coupled with Lupron. Having read of the long term side effects on the body and also having experienced many, I decided to cut the dose of Zytiga and prednisone. I also took the Zytiga at breakfast with food, always fried egg on toast and yogurt,
500 mg of Zytiga
10 mg of prednisone every other day.
In July I posted the result, which was three months of reduced dosage, showed approximately a 50% drop from 0.527 to 0.215.
This month I had another PSA test, the result is about a 40% drop on before 0.152. A good result, the lowest ever for me, what interests me, is what are we all looking for with the PSA level.
I have had very little side effects, the usual stuff we all put up with, but after the injection, well it wasn't a breeze, but it never reached storm force.
Last week I eventually found an oncologist who would listen, he even took note of my name 😉. He agreed that we should continue with the reduced dose, but monitor it every 3 months, not 6 as before. He agreed to a bone scan, to find how the density is now, it's been ignored before, even though I have asked for help. I was concerned because I have coeliac condition and the treatment for this cancer and the coeliac aren't compatible, osteoporosis, osteoarthritis etc. Thanks Patrick for your help with this.
One subject, which is pretty important, is how low you can adjust the dose of Zytiga and Prednisone, here they feel that at 250 mg of Zytiga, it becomes ineffective, also we need some prednisone ( a steroid ) to pick up the loose threads created by the Zytiga. Just a point, but I guess some will have opposite ideas.
I know like you, that just around that corner there might be a freight train, but maybe not, perhaps it's been derailed, who knows, the train ticket may have expired, but not necessarily the man. We have to sometimes question and get that taylor made suit and not the one off the peg, but there is no guarantee 😂.
I hope that this may encourage some of you Shanti1, tallguy2 and LearnAll, if we all continue to share our information, the stronger we become.
I am going, you may already have fallen asleep.
I wish you all a good day and pray and hope that you all keep fighting.
Phil
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Lettuce231
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Thanks Lettuce...I am taking 250 mg of Zytiga and 5 mg of Prednisolone a day with full fat yogurt one cup. My PSA has been on continuous decline from 830 in May2019 to 0.5 today
Also ,my Alkaline phosphatage has come down from 191 in May2019 to 77 today.
I plan to continue 250 mg a day of Zytiga..I believe it is doing the job.
I fully agree with "taylor made suit" analogy...Prostate cancer is not one entity...there are simple ,milder ones called acinar adenocarcinomas..then there are more aggressive ones such as small cell types, ductal ones and of course Neuro Endocrine type.
Besides every one's defense capability also varies...comorbid medical conditions vary too and right kind of nutrition, adequate physical activity and some well known supplements
all help.
By the way, As I am writing this, Guess what ? I am chewing a small sized Cauliflower (raw) In 10 minutes, I will be going to Park to brisk walk with my wife to complete my 5 miles a day walk.
Hey Phil, Bravo on the great news! Switching to 3-month blood tests sounds like a good idea. It lets you make any small adjustments you might want to sooner.
You mentioned "... what interests me, is what are we all looking for with the PSA level." I might not be answering the question but I never had a number I was hoping for...just "low" and staying there as long as possible
My new MO made a comment about how no one has done a trial for reducing the dosage so no one knows how low you can go. You and the other guys are on the cutting edge for this!
My MO told be that taking one Zytiga tablet (250 mg) per day with a low fat meal is more effective than taking four/day. I do not have any references to back this up. I started in August. My PSA dropped from 165 in June to 10 the other week. But, I had a tumor radiated on my spine in July, so I'm not sure what to credit. I constantly experiment on myself. My last monthly Lupron shot was early July. My testosterone went from undetectable to 22, last blood test. I'm hoping the hot flashes will stop soon. I have been living with metastatic prostate cancer for 9 years (PSA never undetectable) and constantly go on vacations from drugs. I'm very active and make the most of each day.
HI, thanks for your post. There are trials going on at the moment with reduced dosage, 250 mg has been used with success.
I am certain that it's down to the individual, also as much as I am very happy to have Zytiga, I am mighty suspicious of the pharma companies and the prescribed dose.
You may notice that the prescribed dose is on an empty stomach, with food the absorption rate is much reduced, so I assume the Zytiga actually gets to work and isn't just frittered away so to speak 😉. Better value for money and also more effective.
I am pleased for you that it is working so well and hope that it will continue for a long time to come, also it's great that you have the courage to question and experiment with your treatment.
Thanks for the post. I have been on Zytiga for 22 months now. I take the standard 1000mg per day although occasionally miss a day. My PSA is 0.01 although it did blip to a massive 0.03 lol a few months ago before I got stereotactic radiation to a growing tumour in my neck C3.
No more pain in the neck after radiation.
I switched to 0.5mg dexamethasone a few months ago from prednisone as data indicates could lead to longer time Zytiga effective and with no big side effects I want it to be effective AS LONG AS POSSIBLE.
I read a long time ago about using half the dose at breakfast. Lettuce but I get my drug free so cost not an issue. Do you see the benefits of less drug as far as short or long time side effects??... or is it just can take less and the same amount is absorbed when have it at breakfast. So no difference in short or long term side effects??
I haven't reduced the dosage of the drug due to cost, fortunately like you I live in a country where cancer care is covered by the state.
My worry was the long term effect on the body of either of the two drugs mentioned. They work, but they will damage us all in the long run and we will end up with something else to cope with.
With previous drugs for this complaint, I have been so ill it's been incredible, every side effect available and I got it. When I was prescribed this one, I looked it up and thought to myself, yes there they are all lined up again, those same side effects and I didn't want them.
By experimenting this way, it gave me the leeway to increase the dose again if I got into trouble, it also gives me the leeway to reduce it still further. But as I said to skateguy, I am mighty suspicious of the pharma companies. Absorption rate is better when taken with food, but not all drugs react the same, but neither do the people and we are people not a cell under a microscope.
I hope this answers your questions and I wish you the very best for the future.
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