45 years old and I'm taking zytiga Lupron and 10 mg of prednisone a day I've been on the zytiga since February and prednisone since February of this year diagnosed with prostate cancer 2016 my quality of life is 0 I'm to the point I want to stop taking the zytiga Lupron and prednisone and just go all natural I've been doing natural juices and everything but I can't really tell if it's helping because of all the side effects of the medicine and I'm ready to just let the medicine go and go on my own with the juices.
Has anyone stopped the Lupron prednis... - Advanced Prostate...
Has anyone stopped the Lupron prednisone and zytiga are together
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Shabazz
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Whatever you do, don't stop taking the prednisone all at once. That could be dangerous. You have to ramp off of it slowly.
try it and monitor your PSA
I had that combination of Medications Lupron, Zytiga and Predizone. It wiped me out at first but after a few months I adjusted to it. The fatigue is ongoing but exercising every day makes a big difference.
Good Luck
Dennis
What are the top 2-3 things that are contributing to your feelings of having a Quality of Life = 0 ?
What are your greatest current concerns? What is most difficult for you right now?
Besides talking about some of those things with your doctor(s), you may find people here who have had similar experiences, or similar side effects to some of the same treatment drugs you have been taking.
Charles
Total exhaustion all the time, loss of memory, weakness in my legs went from being able to walk well, to not being able to walk fast, to walking slow to not hardly walking at all. Staying in the bed all day, because I have 0 energy, pain in my back, insomnia, severe sweating. I was not feeling this way before I started on these Medications.....I'll taper off of the Prednisone
Yes. Let the side-effects stabile over a period of time. Yes. Fighting cancer is a damn bitch, it hard, frightening.
But the side effects from the cancer reoccurring, continuing to grow will be hell compared to the side effects.
Yes. I am fed-up, and oh so tired of this cancer and the treatment (side-effects).
Keep strong, keep communications, take care of yourself.
—————
You can read my posts on this site (Lupron and side-effects). And the “trip” on Facebook (William Cooper, Savannah, Georgia).
• in reply toWilliam123Cooper123
The” Trip” , Bon voyage , it ain’t always a pleasure cruise but it beats the alternative. Very fine words. Thank you.
Try dropping Zytiga and just do Lupron....My bet is you will have way less side effects.
• in reply toShabazz
Hey Shabazz! I’ve had all of those same side effects..they should get better with time or you’ll adjust and accept them better.. It’s no walk in the park. I know how you feel. Don’t give up on yourself.. sometimes I feel that my life is one giant pee party.. all day all,night,, running to pee. For 11/2 yrs I couldn’t pee at all .. Running at least I’m living.. That fatigue will level you.. dont become R.I.P. van winkle. I did that to where I’d sleep 2 or 3 days . Only getting up to pee. Very bad for us.. I’ve been on Sam-e with alpha lipoic acid for two months. My moods and energy have improved. Now I don’t want to lay in so much anymore. Don’t worry about not knowing. That’s why this site exist. To help give you answers and support. Take care of yourself. Scott
what about loss of memory, how did you act? did you know every one or was It just a small loss?
• in reply toShabazz
I’ve had all of those symptoms. For me they are getting better with time. Or I’m just adjusting to them.. what a life??? Take care...
• in reply toShabazz
Been there done that , it’s a catch 22. The more you sleep the more you want to sleep . I slept way too much at times. I’d sleep into a state of depression . At times I felt like Rip-Van-Winkle.. we don’t want to be that guy....sleep is sometimes a place of solace and an escape from the daily grind of APC. I’ve always done best with 8hrs of sleep. I’ve taken 20mg melatonin and4.5 mg of naltrexone before bed as well as canabis oil . I have pleasant sleep and dreams between the 5 trips to pee and the resulting hot flashes every night. Minor price to pay because I’m not in critical pain. O life quality sucks.. you must change that anyway that you can. Do not sleep more than you wake...
• in reply toctarleton
Very good..
What is your psa? Is this initial treatment? I'm 7 months in stage 4 withs mets. Lupron prednisone and zytiga . I'm dealing with hot flashes , ED of course but not so bad. What is killing your quality of life? I understand as men will make are own decisions. Wishing you the best.
I am currently and have been on all three for the last 8 months. Plus 4 chemo sessions. I'm 62. Before I started my doctor told me that men who do strength training (at least 3 days a week for at least an hour each time) do really well on this stuff and those who don't ...well...don't. I have religiously weight trained with a trainer 3 times a week and missed only two sessions in 8 months. I feel great. Other than ED (i can do ok with Viagra maybe once a month) I wouldn't know I'm on anything. It's hard work but trust me it works. Not aerobic exercise. Weight training. My dr explained that with no testosterone the muscles will weaken and it will drag you down. I've actually lost 8 pounds and am stronger than I've been in years. Please don't stop as studies show the two combined (zytega and Lupton ) really work well together. Force yourself to go to the gym. Work out with light weights to start but every muscle to exhaustion. If you can afford a trainer do it. If not do it on your own. I did not think I could do it but I did. Good luck.
Schwah
• in reply toSchwah
Exersize is the only thing agreed upon by all as a benifit to almost every condition we suffer. Both physical and mental plus emotionally. Chronic fatigue syndrome is a deep pycological pit. Exersize is key ...to everything..
PoP1953• in reply to
I've started exercising more; however, the day after I'm exhausted. My legs feel like lead weights all the next day. will this continue or will this get better as I continue to exercise?
You have to do a progressive job and, little by little, increase the intensity of the training. The accumulation of training will help you.
You need to train to continue training.
Got it. Thanks.
• in reply tojoancarles
That is correct jc! Keep the faith brother!
• in reply toPoP1953
I know that feeling. It should get better the more often you exercise. We are called on to work out and daily exercise.The more the merrier, but where to find the energy without T driving us ? It ‘s a battle to find the motivation to do any boring exercise routine even though I lifted weights and worked out most of my life. Breathing exercises, yoga , meditation , gee gong all alternatives to standard gym
Based exercise routines. Still where to find motivation ? Set a routine. Some days im a lazy fool don’t do much of anything. I started taking alpha lipoid acid and Sam -e 3 months ago , wha la my moods have improved, energy levels up and I now pop up in the morning instead of pulling the covers over and sleeping too much.
whatsinaname• in reply to
Nopes, I do not agree with the exercise regime that most on this board claim they are doing. Cycling hundreds of miles, pumping iron frenetically and walking mindlessly.
If anything it will only make them worse unless they are merely doing what they had already been doing earlier.
Exercise must be eased into and built up gradually. If it is done scientifically, not much time needs to be spent on exercise.
Cheers, Lulu700.
• in reply towhatsinaname
I love to hike in nature. Not just the physical part but the joy and knowing that we are minute in the overall scheme of life. If I dwell
Only in my own thoughts i can get trapped in an empty hole. Connecting with Mother Nature is my thing. We got called down from
The mountains to the desert to care for mom
91 in a car crash. 2 months of rehab and mom
Is home with help. I can’t wait to get back to the alpine terrain. 119 yesterday driving in Tucson and my cars ac broke. We’re heading for the hills. I haven’t really exercised beside manual labor for the past 2 months. Simply staying active , walking and doing fun stuff outdoors is my thing. It is very easy with no Testasterone to become lethargic. And I was big on “T” before and never took a time to smell the flowers. We all travel down this bumpy road just trying to keep the wheels on. Good luck and health to you . Take it easy !
whatsinaname• in reply to
My main idea in life, Lulu700, is to take it easy 
Thanks for the good wishes. I wish you and yours all the very best in life. Cheers !!
• in reply towhatsinaname
Thanks brother. I will take all the good cheers thank I can get. We all have a foot caught in the same trap. People say to me “ you look great”. With clothes off not so much greatness .Nice to hear but looks can be deceiving. So when anyone ask how I feel I just say great. nobody but nobody wants to hear a long laundry list off dismal side effects and BS. APC is monatamous all best on a good day. Frustration of loses of abilities have plagued my past 3 yrs. prior to my dx in my own mind I was the king of my domain and had no fear. My body and chemistry now drug thru the coals now tells me that I am in charge of nada. If one believes that “The meek inherit the earth “ well then I’m there.
Grumpyswife• in reply to
I loved being in nature picking berries and mushrooms in the woods with the owls, foxes coyotes when we had a small acreage in Minnesota so I know of what you speak. But then I remember the ticks, mosquitos buckthorn and diseased trees needing to be downed, invading mice and moles and I don’t miss it as much.
• in reply toGrumpyswife
Oh yah , nature has many pest. I n our desert pack rats are the nemesis. Eating cars wiring and destroying everything they get into. Wild mushrooms might be my favorite taste .At one point I stayed in lakeville mn you betcha! I remember walking in 40 below. Any skin showing will be frost bite. Never been so cold. That walleyed pike sure was good though. Take care , enjoy life.
I’ve been on this regime for 6.5 years, as part of the Stampede trial. Whilst the side effects were pretty bad a first, over a period of time they dissipate, and life returns to a level of normality. DO NOT stop taking the prednisone without also stopping the Zytiga. Zytiga has to have Prednisone to prevent severe problems with your adrenal glands.
As regards going ‘natural’, I don’t believe that is a viable alternative. It is fine as an adjunct to traditional treatment, but won’t cure or contain your cancer on its own in my opinion.
• in reply toTommyTV
That’s correct🌞!
These medications drove my psa down from 850 to less than 1. I have stage 4 prostate cancer that has spread to bones and lymph nodes. I'm hoping the cancer goes into remission. I was in the hospital for 3 days getting 4 pints of blood to stay alive. You don't want to go through that. Listen to your doctor, not people that have the miracle cure by changing your diet. But, its your choice. I wish you well.
So plant based diet is wrong and man-made poison medicines is right. The spirit will lead us all on our journey wherever the spirit lead you that's where you go. God he is in charge of my life not I.
I didn't go into the hospital by choice. I went in because I was near death. Didn't know that I had stage 4 advanced prostate cancer. At that time a plant based diet probably wouldn't have worked. I had hours to live. So don't judge me on what was done at the time to save my life and don't lecture me on God or the spirit leading me where to go. I believe in God and pray for his guidance and I believe because of this, I am alive today. A plant based diet is excellent and will probably help you. I follow an excellent diet which isn't 100 percent plant based but close. Hopefully your cancer isn't as advance as mine. Let me know how you're doing in 4 months.
• in reply tolincolnj8
I too almost died on the onset of APC. Gives a us a little different perspective. Someone said “Pc” is never an emergency. They didn’t end up in IC U with kidney failure due to pc tumors shutting down the bladder and urethra. That s an emergeny!
Shabazz, that's a bit severe. I'm not in the slightest bit religious, but your comments are a bit harsh. So God gave you cancer then? Very unprofessional of him.
• in reply toShabazz
I am with you on your thinking .Mo matter what we do, each to their own .Wr are here only by Gods will. Thank god every day even when in misery. My Mormon friend believe that if we suffer and survive or even pass while suffering that if we handle it well we will be rewarded for being tested. My friend told he’d die before 21is now 42 and has been test with type #1 diabetes , 2 transplants and a total of 10 yrs of his life lived in dialysis waiting for those transplants. This in my opinion is worse that APC. God has blessed Tommy my friend wit a love of life in the face of suffering .May we all have faith and pass this test. Many regulars here only belive in the “Man “ made pistons of which we are all on I’m attempting all natural sources to counteract these poisons. Good luck
I didn’t like the prednisone, they weaned me off that shortly after the chemo. Still on the eligard (lupron ) and Xgeva shots monthly. Life got better after the prednisone was gone . Use your doctor to wean off the prednisone like any drug.
A lot of patience and a lot of effort. in August I started from a very bad position with a PSA of 1300 and a lot of weakness. My medication is the same as yours. my obsession was to walk even if it was difficult. Little by little I have been improving in the presentiality a PSA 0,18 and walking an average of 10 Km a day with a certain rhythm. You have to make an effort and do not let yourself be defeated. For me the greatest miracle is to trust in medicine and in my effort.
• in reply tojoancarles
Keep your head up friend!
Hi Shabazz, I'm on the exact regiment of medication and the only side effects are occasional hot flashes which are tolerable. I found that keeping active and taking my medicine with at least 12 oz. Of water especially the Zytiga works well. I walk my dog four times a day for at least fifteen minutes. Please consult with your doctor for other options and never give up. Best of luck Leo.
• in reply toleo2634
Dog , mad best friend. Take care Leo..
leo2634• in reply to
Amen to that LuLu my wife knows she goes before my dog. Just kidding she knows I couldn't live without her lol..
My dog puts a smile on my face just like when I sit in the BMW.
• in reply toleo2634
My 2yr old 12 pound lulu is a light in both my life and all she comes in contact with I take her o cancer center and she sits with people doing Ivs. An pet can. Heal
Our temperaments right away. I too have a super women putting up with my BS as a newlywed for 3yrs. Poor girl she loves me but it ain’t easy at times. Peace at for you and for us all is most important. Happy wife happy life .Unhappy wife and life is miserable .Lets keep em
Happy..Without Love I’d choose not to exist. But I choose the love. Hope you recovery well and keep truckin. A🌵Scott
I have been on the same combination therapy. I experienced the same awful side effects. In fact, they had to drop the dose of Zytiga to 500 mg. As to Prednisone, I only take 5 mg. Lowering the dosage helped my body, and particularly my liver, to recover. I'm seeing my oncologist next Friday and we'll discuss gradually increasing the dosage of Zytiga. I have to agree with you. Zytiga is a challenging drug to take and beats you to a pulp. By the way, I am 56 years old and was diagnosed with prostate cancer 12 years ago. I was in remission until 5 years ago when they found bone mets. My weight has also dropped on Zytiga. I presently weigh 112 pounds and I am 5'7". Please stay the course and try to see if lowering the dose of Zytiga to later increasing my help. Take good care of yourself.
I was on Prednisone 10mg and had to reduce it to 5 mg. due to side effects. Started on 5mg and felt much better but am now on 2mg. Discuss this with your doctor, and try the reduction.
Wisconsin ginseng is good for fatigue..
Give it time. Things should improve.. hang in there. Don’t drop the plan without drs advice.. and they will. Say no way.. use natural stuff in addition to treatments to help counteract the side effects and damage.. if you so choose..
Shabazz, l was on the combination for 2 years. {understand your concerns. I've since moved on to chemo which has not been effective with a little worse side effects. I've been considering stopping treatment as well. A couple of considerations: 1) the cancer may be the cause of your fatigue and weakness. The meds may actually be helping with those symptoms rather than causing them. 2) The cancer without treatment is going to be tough. I watched my dad refuse treatment. It was hard. Pain meds will help but trust me they impact (no pun intended) my quality of life significantly.
It's our choice to make and I'm there with you , at some point enough is enough. Best to you.
Hi I’m on the same medication you mention above and the first year was hard but you have to push yourself if physically possible. There are many days I have wanted to stay in bed but I don’t allow myself. This journey is a huge mental battle and that part has been the hardest to fight for me. I walk miles each day because that keeps me in the now. We are all different but I have experienced a wide range of symptoms from flushes, tears, mood swings, muscle wastage and fatigue. It gets better with time and our body adjusts to the new norm. I think you need to remain on your treatment plan and dig deep however introducing a healthy regime will probably give you a new focus and help with how your feeling. You have all our support on this site and I hope your symptoms dissipate as time goes on. 👍
Zytiga alone has some pretty nasty side effects. It made my father so sick he was in the hospital. And it didnt do much to slow down the disease. My bet that's making you feel crappy. When he stopped the swelling in his legs went down, was able to eat,energy went up.
NO! Maybe use juices to supplement the medicine.
Hey Shabazz:
I got you by 20 years. Mine's Stage 4: prostate, lymph system, blood, bones.
I hear you about quality of life and back pain on Zytiga. I'm doing 1,000 mg a day with prednisone. I'm dealing with it with a combi of aspirin and Green Tea (copious amounts, it's anti inflammatory qualities help manage my pain.)
Dunno if this matters to you, But, when I began taking Turmeric and Ginger compound the pain and discomfort in my lower gastro/urological tract cleared right up. 36 to 48 hrs. Haven't felt this normal down there in 6 months.
After having chased a handful of 'Natural Do It Yourself Cure At Home' pieces into dead ends I got the Quackwatch and Wiki pgs on already disproven or never proven treatments.
Great time savers. Because, this next idea did not pop up on them. I'm trying it.
jeffreydachmd.com/wp-conten...
quote:
"b. Cancer – Cancer is a result of mutated cells. Iodine is absolutely critical for
something called P53 gene which is known as the “keeper of the genetic code”.
Without iodine and selenium it will not function to eliminate abnormal cells from
the body such as cancer. Cancer patients have taken anywhere from 50 – 300
mgs / day successfully. Here is a good article on how P53 works with the mdm2
in cancer sciencedaily.com/releases/2... For
information on the P53 and Iodine see the Minerals for the Genetic Code book.
I'm trying it why?
1st appt with my Oncologist who put me on Zytiga, he looked me straight in the eyes and said; "This WILL Kill You."
Since I did find pprs at NIH that looked promising, and I've got nothing to lose, .
BTW: An FYI for others searching the net:
Using the engine scholar.google.net will return you more science pprs than simple google will.
My personal disclaimer: I am not an MD or anything else, not selling anything, just another patient, and like so many others here will tell you, clear everything with your Doctor First.
Good Luck.
sorry, that search engine is scholar.google.com
I've been on Lupron or Firmagon for two years after prostate and lymph resection surrgery followed up by chemo and a PROSTVAC trial. Three months ago I stopped all hormone therapy. No rise in testosterone yet but I'll keep everyone informed. The conventional wisdom, supported by studies, is the intermittent ADT is not as effective as continuous therapy but application of treatment is patient specific regardless of quality of life issues. My oncologist is an advocate of IADT for some of her patients. I'm one of them. At diagnosis my PSA was 44, post chemo 1.4 and now I hover between .06 and .09. Stage 3+ with various lymph glands involved but no distant mets. I would not consider going off ADT if I had bone or lung mets.....until it didn't work.
I'm very sorry to hear that. Was diagnosed with Stage 4 in August. PSA was 45. Began Lupron in September. Monthly PSA scores were 45, 18, 9, and now holding at 0.9. Also began aggressive workout regimen and have added an inch or two to arms and chest. Feel in best shape in years. Only Lupron side effects are surprising emotional incidents where some minor things have me crying like a baby. Freaking hormones. Now that I know source, more controllable. Other side effect was swelling in calves and ankles. Torsemide didn't help much. Started Zytiga + Prednisone combination 3 weeks ago. Feel great, and now swelling is gone. Go figure. But if possible, I'd recommend starting very carefully to work out. Positive momentum is a great thing, if you can get it rolling. Happy Groundhog Day.
hi Shabazz
have you stopped Liprone completely? are you still having sides of Liprone after stopping it?
I had a problem with the Zytiga (liver), but have continued the Lupron and prednisone. 0 PSA AND I feel great for almost a year and a half
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