Stopped Zytiga and Lupon

[Oregon56]

I have stopped all treatments of Zytiga/Lupon treatments as the side effects grew so bad. It's been 90 days and will keep you updated. Just can't live with side effects which includes not being able to work. Nearly homeless and broke I had to make the difficult decision. Homeless with stage 4 cancer and broke is very depressing however I'll keep you posted if my cancer keeps progressing. But totally off my treatment with cancer only in lymph nodes, had my prostrate removed, 82 radiation treatments. After 16 months learned it had moved into lymp nodes and started the meds, but literally felt suicidal on Zytiga/lupron and 2x.5 prednisone.

[NPfisherman]

Sorry to hear this story...this is the SS APC hell ship, but for you.....it has been the depths of hell...

There are individuals who have taken Zytiga 250 mg--1 tablet only with a low fat meal like a cup of yogurt and done well on the lower dose, and there are trials doing Zytiga without Lupron... and the Lupron is known to cause depression--below..

rxlist.com/lupron-side-effe...

The Prednisone also can cause psychological issues...You could try the zytiga with/without Lupron, but must take prednisone, and might consider adding venlafaxine, also known as Effexor, an antidepressant which is good against hot flashes, but also can be quite energizing in older patients if fatigue is also an issue...

One poster, RonRon uses estrogen gel and is doing well on that...it is generic and venlafaxine could be combined with that also...

You could also consider apalutamide which I took in a trial and tolerated quite well with no fatigue...

I would talk to your MO and see which of these options might work best...This disease takes the best from us, but we should not let it win without a fight in my opinion. Wishing you the very best....prayers for you....

Take care,

Don Pescado

[Oregon56 in reply to NPfisherman]

Thank you, at times my depression and ongoing side effects makes me think I'm the only one suffering and it's all me. We live at the beach so I have a tan and everyone says how great I look but dying inside. Being sick and hard to work with side effects makes me think it's all in my head. Truly living Hell right now and going broke. Good to hear I'm not alone but feel for others and their families.

[NPfisherman in reply to Oregon56]

See your MO to talk about options....timotur doing one of the things I suggested with slight variation and success, and TA suggested the estrogen also--gel vs patch... I advise that you print some of this off and take to your MO visit... the Venlafaxine is energizing and good against the zytiga/ADT side effects...Exercise may help also as timotur suggested... You are not alone... On a difficult part of the path right now, but get some help and you will get through this difficult time...

All the best to you, brother....

Don Pescado

[Hidden in reply to Oregon56]

I felt many times during my first years with APC that I was a burden to this world ,my wife ,and all would be better off without me .. I was wasting the precious resources of this beautiful Earth that we live on . That’s pure BS . Don’t kill yourself my friend ... we are all in this together,fighting the same nemesis ... We all suffer the same .. I’m not qualified to give medical advice . My unprofessional opinion is to not stop treatments and find a way through it.. yet we are all individuals and must follow our own will . Peace. Scott😎

[Oregon56 in reply to Hidden]

Thank you, nice to know as we fight this we're not alone.

[Longterm101 in reply to Oregon56]

What beach do you live at? What is your current psa and T levels?? Let us help you thru this.

[Oregon56 in reply to Longterm101]

I live at the beach in San Clemente. I tried to end my life and was put in the psy unit for for 36 hours. I'll take the train tomorrow to the VA in Oceanside to have my blood work. I'll let you know when I get the results

[Longterm101 in reply to Oregon56]

Lets us know and as Tall Allen suggested try the Estogen patches. No side effects

Hang in there !!

[gyancey in reply to Oregon56]

I am so sorry you have to go thru this. I live in San Juan Capistrano. I can private message you my contact info if you need to reach out to someone for support.

[timotur]

You may try experimenting with dosages. I'm taking 1x/day Zytiga with yogurt, and doing monthly Lupron shots every six weeks. I believe I read European or Japan dose of Lupron is 1/2 the U.S (11.5mg/3 months). I have night sweats and some muscle fatigue, that's about it. Exercise daily to sweat out the byproducts. Lupron should be covered under Part B Medicare, and there are generic Zytiga options.

[Tall_Allen]

Estrogen patches are a cheap alternative to Lupron and doesn't have some of the side effects. Take with 10 mg/day tamoxifen to prevent breast growth and tenderness. Have your pelvic lymph nodes been irradiated?

[AZjame]

A 6 month shot of Eligard (generic Lupron) was given to my husband in late April as part of his adjuvant radiation treatment. I now understand (too late!) that he should have refused ADT because of previous mental health challenges. The shot has caused severe brain fog, depression and anxiety. And like you, he has been struggling at work because of these side effects. It's been so bad we are seriously discussing early retirement. Hopefully the side effects will fade away but we now know they can linger a long time or worse, may be permanent.

He has an appointment in a couple of weeks with a psychiatrist that specializes in this type of comorbidity so we remain hopeful he can overcome this with the right pharmaceuticals. Eventually he may need further PCa treatment and if he does we'll try estradiol patches or gel first. If he becomes castrate resistant we'll try Nubeqa (darolumatide, just approved) as it doesn't cross the blood/brain barrier and may have fewer of these type of side effects. Dealing with ADT side effects has been much worse than dealing with RP and radiation (so far no problems from either treatment). Know that you are not alone and I hope for better days for you!

[Hidden]

I am with you on the side effects being sometimes insurmountable .... I’m sorry that you’re in this hell . I’ve been here almost five years myself . I ‘ve gone through much self loathing and suicidal ideations ..myself .I too couldn’t work and spent every penny of savings staying alive ... I am not so brave as you to stop treatments .. I’ve been clear of all visible signs of pc four years now ,and I still won’t stop the adt I’m on ..Im racked with side effects too... .. Many prayers to you that you find the path that is right for you to heal and find peace .. no simple task .. Good luck Sir..

[Oregon56 in reply to Hidden]

Thank you

[Magnus1964]

You have not mentioned it but have you ever been on casodex? It's an older ADT drug with fewer side effects. And the cost is a great improvement over zytiga.

[Kevinski65 in reply to Magnus1964]

Any chance in getting in a clinical trial? Most times the cost is paid for. That's what I've been doing. I couldn't pay for Xtandi otherwise.

[Magnus1964 in reply to Kevinski65]

Check this website

clinicaltrials.gov

Search for abiraterone or prostate cancer.

[lincolnj8]

So sorry to hear of your living hell. I am on the Zytiga Lupron and prednisone trip. No smoking or drinking, just anger and depression fighting this beast. Exercising helps but drains me. I'd rather be working on things (just retired). Lost strength and seem to be in a slow mode So, what I did was the reward program. I gave myself something to look forward to. After dealing with another day of being half the man that I was, I sit down and have a nice bowl of ice cream. Don't laugh, its like screaming NO. I'll have this vice and nobody can stop me. Like you, I fight depression, weakness, anger and all the hot flashes and sweats. If I worked again, I would never be as good as I was. Most of us can't go like we used too. For me I begrudgingly accept that. Your MO should have something to help you. My Mo and general doctor always pry to see how I'm coping with this. I always put on the smiley face. They see through it. Try to look forward to little things that make you happy. Try to reboot. This is a great place to research for answers. We are all in this together. Bob K

[Bebby1 in reply to lincolnj8]

Enjoy that ice cream

You deserve it

My husband feels half the man he was

Weak

Easily fatigued

But pushed through exercise

And tries to eat less sugar

His diet is great

But he does crave crap

I’m sending you all positive thoughts and prayers

[lincolnj8 in reply to Bebby1]

Sending prayers your way too. I now take a pill for acid reflux. For about a year now. The ice cream sooths my throat. Well, that's my excuse. I was in such bad shape 1 1/2 year ago, I think my MO is amazed I'm still walking. He told me to buy the good ice cream, not the low fat. Go figure. Everyone needs a prayer now and then. I'm sending you one. Have a great day.

[Bebby1 in reply to lincolnj8]

My husband also now takes nexium, anti reflux

I’m the grocery person

And I too buy the “ good “ ice cream

What’s life without good ice cream

You’ve done well against all odds

Hang in there

💞🙏🏽

[lincolnj8 in reply to Bebby1]

One month I was healthy as an ox. One month later I was in the hospital getting blood transfusions to stay alive. I never knew it was coming. We downsized some to make us financially better. Also sold off some small assets. Stopped spending on foolish things. Kept our old vehicles. Shopped differently. Taught myself to enjoy each day and unclutter everything. Also sold my stuff on ebay. Made some money and kept me busy in the winter. Plus feeding the wood stove all winter, Free heat and very warm. Also love getting up 4-5 in the morning before the world wakes up.

[whatsinaname in reply to lincolnj8]

The good ice cream is undoubtedly the high fat ice cream.

I scream, you scream, we all scream for ICE CREAM.

[lincolnj8 in reply to whatsinaname]

The only way to go.

[whatsinaname in reply to lincolnj8]

Absolutely, lincolnj8.

[Bebby1]

I’m so sorry to hear your story

Financial stress is crap... and you are unwell

My husband takes Effexor and it has decreased the hot flushes and as it is an antidepressant it has helped him lift his mood and go more exercise

Maybe try a small dose of Zytiga

I wish you all the best

Please keep us posted 🙏🏽

[larry_dammit]

Sorry to hear this, understand it though. Keep up the fight and don’t let the monster win. 🙏🙏

[Break60]

Try estradiol patches . Start with four .1 mg patches changed twice weekly and monitor results of T, pSA and estradiol (E2). When T is below 20 , drop down to 3 of the same type of patches . You need a script for the patches. Side effects are way fewer except for breast growth which you can mitigate with tamoxifen. Ask your doctor to read the PATCH trial being done in the UK for info. Did you have radiation to your lymph nodes as well as prostate?

Good luck.

[Lettuce231]

I have read your story about three times now and I am truly gutted for you. There are so many of us who, like you, have wondered which is worse, the side effects of this treatment or maybe not having known about what we have in the first place and then that terrible illness would have taken its own natural course.

But having really thought about it, we have life, our most precious asset, although it's hell sometimes, often it seems more times than not, but we are still able to change our minds to look at what remains beautiful in the world and move on.

If you had not been diagnosed and found out too late, would you have felt cheated, that your life could have been longer ? Now you are thinking of cutting it short.

Don't stop your medication, I have cut back the Zytiga to 500 mg a day, taken with food, I have also cut back the prednisone to 5 mg daily, the PSA is still going down and I feel the best I've felt in ages. The injection side effects were minimal this last time, I am sure the result of a better managed medication. My intention is to cut the Zytiga again.

I do exercise, walking and working at home, I eat well, that's important too, but I also have a drink when I want to.

Don't give up brother, this is a bad enough pit for us all to be thrown in together, but the help here on this site is enormous and you can turn your life around.

Stay strong and draw strength from these guys here and keep us all posted of your progress.

God gives strength to the tired one.

Phil

[Rocketman1960 in reply to Lettuce231]

I agree with this post 100%. Don't stop, just retool the dose. Also life was made to be lived! Hold on to your faith! Ken

[Lettuce231 in reply to Rocketman1960]

Hello Ken,

Thank you for your reply, I guess we have one of those illnesses that doesn't receive a huge amount of support and isn't really recognized for the damage it can do to an individual during treatment. That's why our brother Oregon 56 is suffering the way he is.

As you put it "retooling" is a definite option, that's all I've done and I hope it continues to work. It never ceases to amaze me the amount of information and assistance there is on this site giving the option of alternative medicines which don't appear in the urologist almanac.

We must all stay positive, have a good day.

Phil

[Rocketman1960 in reply to Lettuce231]

Hi Phil! Yup, I'm 9 years in. Currently on Lupron +Xtandi. PSA nil. To quote my doctor "Ken, you are going to have to learn to age gracefully a bit earlier than planned".

[Lettuce231 in reply to Rocketman1960]

You look very young from here my friend 😂

[Rocketman1960 in reply to Lettuce231]

I figure the one thing I do have control over is attitude. A good one can only help. Like everyone on this thread I have some very bad days too. Just rest and look forward to the next day being better. Thank you for the kind words. They mean a lot.

[Brbnbrn]

My thoughts and prayers are with you. Struggling with using life savings for Zytiga as well as depression. My husband, Brian, keeps working out, staying in touch with friends and working on his beloved Mustangs. I told him I'd live in a cardboard box with him before I'd let him stop Zytiga.

I'm happy you have the VA to access (thank you for your service) and the beach is a blessing. Keep that outdoor activity that gives you that tan and f*** the beast!

[NPfisherman in reply to Brbnbrn]

You should look into getting abiraterone acetate shipped from India--Glenmark pharmacy makes a brand that many use on this forum for hundreds of dollars a month vs thousands a month--also consider using the 250 mg with a low fat meal as opposed to 1000 mg a day, and lastly, the assistance programs--Mylan has one for generic abiraterone acetate. Having this disease pushes the financials without really good insurance...

Good luck....

Don Pescado

[samahieb]

Hang in there Oregon! I'm doing Zytiga and Lupron too...55 yrs old and tossing boxes at the UPS! Heat's been a real biatch down here in the South...going through some self-loathing, especially since my Mom died 3 yrs ago...exercise, prayer, healthy diet and limited alcohol (though I don't deny myself either) time with family and friends, but also plenty of rest and TV shows with the wife who's been by my side this whole time. Draw inspiration from the guys and gals on this site!

[Oregon56]

Thanks, I'll let you know my results. The depression and my frustration of feeling I'm the only one with issues and my MO saying to my wife and then to me I just needed to be more positive! I actually tried to take my life about 5 weeks ago. Now we're broke with fear of being Homeless and can honestly say I rather have taken my chances with cancer. I may be the only one but keep following me and I'll let you know what's worse. This group is great and thank you

[MateoBeach]

Oregon I am in a similar stage of disease. 1. Pelvic lymph node mets now. 2.Cannot tolerate Lupron. 3. History of major depression recently returned for a visit. I'm off hormonal treatment while arranging whole pelvis radiation at OHSU in Portland. I tried venlafaxine (Effexor generic) last month and felt better quickly, but my BP shot up very high. So I want back to fluoxetine (Prozac) that I used long ago with no problems. And there are other good choices. Feeling resilient and happy to be alive again.

I plan to use the estradiol (gel or patch) when I return to hormone treatment as T_A and others advise. Tamoxifen 10 mg to prevent man-boobs (especially living at the beach!)

Be resilient Oregon56, carry on and do whatever is necessary to honor life. You are not alone in the fight: We are holding you.

[Oregon56 in reply to MateoBeach]

Thank you

[Grumpyswife]

If you can't tolerate the side effects and can find a way to be on the beach until your final days, may you enjoy the rest of your time on earth. Clear your mind of worries and do what you want. My husband is right behind you.

[rsgwynn1]

An over-the-counter med called i-cool helped me when I was having bad hot flashes the first years of Lupron/Prednisone/Zytiga. For some reason, the hot flashes went away on their own after a while. Anyone who is depressed should be taking an anti-depressant as feeling down is standard with the treatment regimen. I've been fighting PC for over 23 years now with various treatments. I have never had much--other than the hot flashes--in the way of side-effects except the loss of libido.

[zenbee13]

Hey There Brother,

I had real problems at the full dosage of Zytiga. I got my Oncologist to cut them from the 4 pills (160 mg I think) to 3 and found that I could then function. I'm not saying I was free from the side effects, as I'm selling my Motorcycle due to be a wee bit dizzy most of the time.

Instead of stopping see if maybe a reduced dose works. I was on Zytiga for about a year and a half after that until it lost it's efficacy.

Good luck, keep up the fight!

Bees

[Oregon56]

Thank you, hearing from others and hearing we are all dealing with similar struggles is encouraging. Hearing the truth is refreshing as many times my Oncologist and Urologist just say have a better attitude and exercise to help me feel better. I'm walking somedays over 10 miles but going broke and on the verge of being homeless with stage 4 cancer makes it hard to just have happy thoughts as it been suggested....its great to have this site to learn the true facts about our disease, side effects and how depression is a huge factor that seems to be ignored. Even as I tried to take my life 5 weeks ago still haven't heard a possible connection between my cancer and wanting to end my life. As I said Thank God for this site!!

N R RADKE

SAN CLEMENTE CA

[annjohannsen in reply to Oregon56]

Please call Johnson and Johnson for possibly free Zytiga 1-800-652-6227.

[gamemaster34]

You are as important to us as we are to you. Keep reaching out when you feel down and we will do our best to help pick you up.

[j-o-h-n]

Now Now Oregon we don't want you to be Oregone....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 08/30/2019 12:10 PM DST - Pinnes

[Helpfulinfo]

Have you tLked to your doctors about your financial situation? Get on line and lookup all the different organizations you can...start with American Cancer Society...PAN.network.....Social Services. Everyone you see on the internet. Thete is help but you have to be out there constantly. That is what I did for us and I was surprised at the help...never know if you don't try.....Please try...go on line now!