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Lupron & Zytiga (Abiraterone) Side Effects

Burgie
Posts: 14
Joined: Sep 2017

Hello All,

Happy New Year and a health 2018 to all of us.  Just wondering about side effects of Lupron & Zytiga and when they "really" kick in.  I am Stage 4, G9, locally advanced (no bones metastasis thank goodness)...Cancer in all 12 cores, outside the prostate and in a few surrounding lymphs nodes....That was the diagnosis in Sept 2017.  After a lot of homework, muliple doctor visits from multiple cancer centers and info from some very helpful advise on this forum I started a clinical trial treatment in Oct.  I am on a 6 month trial of Lupron (once every 3 months) and Zytiga every day.  I am 2 1/2 months in and feel pretty good.  PSA went from 68 to 0.32  I get joint ans muscle aches in my legs & knees, hot flashes and some short term memory issues but nothing thats really getting to me yet.  I am 47 years old & still coach hockey and try to stay somewhat active.  So far no big issues like I said.  Then....came the past 7 days.  I have been extremely emotional bordline depressed on occassion (Tis the seaason !!!). 

Questions: Is this normal for others on these meds?  I have read after my next Lupron injection the side effects will beconme more intense over the next three months until my surgery in April.  Any input of how the next few months may go?

Thanks and take care all.

 

~ Burg

Old Salt
Posts: 720
Joined: Aug 2014

Thanks for participating in this important clinical trial! Using two distinct hormone therapies at the same time is rather revolutionary.

Now, with respect to your question, side effects are largely due to the lowering of the testosterone level. And yes, those side effects are common, but vary a lot among patients. The mental aspects (depression, forgetfulness etc) resulting from hormone therapy are not uncommon. Some people have reported that they got worse over time, but mine didn't. It's hard to predict how you will fare. You are trying to remain active and that's a very good thing. Continue and try to stay positive. Finally, bring your concerns to the doctors (and their staff) conducting the trial. 

My best wishes fighting your battle.

VascodaGama's picture
VascodaGama
Posts: 3031
Joined: Nov 2010

My opinion is equally to Old Salt's.  It's hard to predict how you will fare. In my case of 18 months in hypogonadism, the effects turned less active as time passed by. In fact, I think that I have experienced all the effects but some were so mild that I almost did not notice them occurring. The one affecting me the most was fatigue. I struggle doing trivial things or when walking the dogs (had to sit down at every 1/2 mile). Mood change occurred in few occasions lasting just a couple of minutes and it could go either way; sentimental or aggressive. They surprised me at beginning but I would control the sudden mood as I knew it to be a cause of the treatment. Many guys comment on crying on any situation. Loss of libido was also evident and I needed to force myself to enter into action. Magnesium drinks (or bananas) were good to diminish the leg’s cramps.

In your case with Zytiga, you may have added effects and some more accentuated due to the low level of estrogens. In any case it all will normalize once you end the treatment and recover from hypogonadism.

Congratulations on the effect of ADT on the bandit. The low PSA signifies that your cancer is hormone dependent proving assurances for many years of control. Best wishes in the coming surgery. Thanks for the wonderful post by Old Salt.

Happy New Year to you and our comrades reading and participating in this forum.

VGama 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3309
Joined: May 2012

Burgie,

I have no first-hand familiarity with Lupron, but was with a close friend through his 6 months or so on Zytiga. It will be impossible to totally differentiate which drugs are causing which effects, but some generalities can be made.

The most common issues with Zytiga are fluid retention (swelling in feet, lower legs), joint pain, and liver enzymes getting out of wack.   Your description obviously features bone/joint pain.  If this is from Zytiga, it will usually pass after the drug is stopped.

Zytiga requires taking Prednisone simultaneously, and Prednisone also can cause fluid retention, even though ironically one of the reasons it is used is to reduce fluid retention.  The most common complaint from Prednisone is agitation and the inability to sleep.  I would guess that your emotional situation is Prednisone linked.  I mostly read and write at the Lymphoma Board, where the average patient is on 4 or 5 (or more) chemos at once, and routinely Prednisone is what pateints hate the most.  But DO NOT discontinue it; its funtions are critical.  Your doc might be able to adjust dose, or give you some Ativan or similiar drug.

A less common result of Zytiga is severe diarrhea, which can be bad enough to kill (rapidly).   If you do develope this (as I said, NOT  a routine thing), call your doc immediately.

I hope your current drug combo works well for you,

max

Burgie
Posts: 14
Joined: Sep 2017

Max,

Thanks for the reply.  You are correct.  I am on Prednisone but only 20 mg daily.  I have been on this several time before for Cluster Headaches (60 mg then taper) so the 20 mg doesn't seem to effect me but you could be correct and it is very much part of the problem.  I do know its importance so no stoppage here.  My biggest complain with the "P" is the munchies that come along with that.  Muchies and loss of muscle from no "T" is not a good combo.  Bowel function in order so thank goodness for this.  Again my biggest issues are mental and I was just concerned that they will worsen after my second injection in a couple of weeks but if so then so be it.  Maybe I will send out apology cards now for my upcoming behavior Wink.  

Thanks again.

~Burg

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

Burg - I am now one year into Lupron but never been on Zytiga. The hot flashes and brain fog are typical side effects. Even though I have never been prescribed any sort of phychoactive drug, I had become very depressed about a year into my cancer journey (having had several failed biopsies) and when my wife was eventually diagnosed with lymphoma last Christmas I became extremely depressed.

I did a lot of research and learned that a common antidepressant named Venlafaxine (Effexor) is often also prescribed for hot flashes due to hormonal treatment for prostate cancer. This was after two years of daliy crying fits lasting for hours. I'm wondering why doctors don't prescribe this more often. I had to fight to get it, but it has definitely been very helpful in many ways.

Because you are in a clinical trial, they may not allow you to take on additional medications, but it wouldn't hurt to ask. Tell them that you have been feeling very depressed (and you have good reason to be!) and have been having a lot of crying episodes. I bet if you also say that you're considering dropping out of the trial because of this, they may take you more seriously... though I am certainly NOT recommending that you actually do so.

sabaileytx
Posts: 6
Joined: Oct 2017

I have gleason 9 with + margin, extracapsular extension, bladder neck, pelvic lymph node, vascular invasion. Had radical da vinci surgery at MD Anderson September 2017. I was on venlafaxine for depression for a few years before cancer diagnosis. I start androgen deprivation/radiation in a couple weeks. Many people tell me that I seem to not even be worried about my diagnosis. I admit, for the aggressiveness of this cancer (5+4), I don't seem to be that depressed. Honestly, I am worrying about the side effects of the two treatments and their affect on my quality of life more than anything. I'm 58, type 1 diabetic on an insulin pump and disabled veteran with 25 surgeries to my left leg from a line of duty injury. I am totally disabled, and now, stage 4 prostate cancer, 4 mths post op, and I feel fantastic! My psychiatrist said his patients on the same therapy do well on this drug. I will tell you, it works great for me. I went through just about every other anti depressent before the docs finally tried this. It has been a Godsend. I feel more better mentally than I have in decades. I can't speak for everyone, but it works great for me too!

Burgie
Posts: 14
Joined: Sep 2017

Hi All,

Happy New Year and thank you for the reply's.  I am an engineer so I need to know and understand everything.  What I am learning is that my need for control, wanting to know what will happen and when is very much out of my control.....I do appreciate all of your feedback and the battle continues.  I hope that as I experience and learn more that I can help others soon.

 

Keep up the fight all !!!

 

PS - I have this need to want to be part of a an awareness campain if it makes sense for my situation & current lefe schedule.  I am joined Movember but any recommendations for reputable national organizations for PC ?

 

~ Burg

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3309
Joined: May 2012

No need for you to apologize for anything, Burg.  When you need to scream, scream here at the Board.

You share that being an engineer means that you must understand and control everything.  I was an electronics expert in the submarine service, so I know some engineering also.  But my civilian degress trained me as a philosopher and historian, so I know that we actually understand little, and control less.  We are like insects flying in a night time swamp.  Most are ok. But some are eaten by bats, a few hit the windshield of passing cars. But most do not.   Airplanes falling out of the sky, earthquakes, massive flooding in the most modern cities.  Ships and ferry boats sinking at sea.   We control very little around ourselves, despite appearances.

Sadly, you now know the world of cancer, where little is known, less controlled, and certitude is NEVER claimed by any doctor.    But it is still science, and has great promise to make you well.  Let that be good enough.  But when it isn't, write here.

max

 

Carinosa
Posts: 3
Joined: Jan 2018

Hi Burgie,

My dad is 83 and is on Zytiga and gets Lupron every 3 months. He had radiation years ago and didn't keep up with dr. visits when he moved across country. About 4 years ago he went to urologist and discovered his psa was 53. Some other details I'll skip over now, but the doctor started him on Lupron about 3 months after that blood test result (when it went up to 200). The way I heard the doctor ask about the shot, made it seem like he was puzzled that my dad had not been on Lupron before. I'm gathering that after radiation, it is something you just take. The main thing I noticed in my dad was much more fatigue and a little less cognitively strong. He was then started on Xtandi (He lost a lot of weight with Xtandi because it took away his appetite, he was also tired on it). That worked for 6 months, and now he is on Zytiga - I think it has been almost 2 years of Zytiga working. However, now his psa - which hovered around 8-10, went to 13 and last week up to 46. I think he does well on Zytiga. His ankles get swollen - He has taken a few days of Lasix (spelling?) and that helped.  He seems to tolerate the medicines, it is dealing with nephrostomy tubes and a catheter that get him depressed - as well as what seems to be  subpar urology care.  He just got a new urologist last week. Maybe this was more info than you wanted. I find it very helpful to hear other's people's stories. My dad is from a generation where you just sort of accommodate whatever the doctor says or does, so I have had to step in as an advocate - more stories I won't get into now!

I hope you tolerate LUpron and Zytiga as well as my dad did and more importantly, that they keep the PSA down.

Chuckect's picture
Chuckect
Posts: 45
Joined: Jan 2018

It is my personal opinion that to become a urologist you have to be at the bottom of the class..(there-glad i got that off my chest)..  I'm glad to hear that your dad is a long time zytiga user,,  i would love to be around for 2 more years on zytiga...  dx with metastatic stage 4 prostate cancer January 2017  did docetaxelwith lupron and xgevaand xgeva now on zy for the 3rd month...   I'm feeling pretty good,  but i don't have the urinary problems your dad is having..  leep on posting andgood luck..  have a great month

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3309
Joined: May 2012

Urology is an honorable specialization, that requires a lot of study and Board Certification beyond internal medicine.

max

jimnebraska
Posts: 1
Joined: Dec 2017

I am 68 in fair health.  I was diagnosed in May 2016, with a PSA of 11 and a gleason of 8.  I had surgery on June 1, two weeks later found that my PSA was still the same.  I went through many scans in Omaha before going to Decatur Illinois they did a pet scan with radioactive stuff.  They found that all my cancer was still in the lymph nodes and had not spread to bones or elsewhere.  I waited until October before treatment, an injection of Eligard once every 3 mounts and Extadia 4 pills a day (this maybe a placebo 50/50) chance.  After reading Berdies comments I would have thought that I wrote them.

 

I have found my memory and focus has been affected more than any thing else.  Some hot flashes but I can live with those.  Overall fatigue but a nap in the afternoon helps.

 

I am considering going to a physiologist/psychiatrist that deals with cancer patients.  Have any of you considered doing that to deal with anxiety and general depression?

 

Regards, Jim

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3309
Joined: May 2012

I recommend that you use any mental health assistance available to you, Jim.  I would say the same to any other man here with extreme anxiety or depression issues.  You deserve whatever assistance they can provide.

max

skyjohn
Posts: 1
Joined: Mar 2018

Hey-

I'm 54.  Will begin 4th year of survival in June.  Had prostatectomy.  Healed for 6 months. 7 1/2 weeks of radiation. Monitor PSA.  Continued to rise.  Began Chemotherapy for 5 months.  PSA went down, but began to rise again at end of treatment.  Now taking Lupron every 3 months and Zytiga daily.  Began last October.  So far asymtomatic.  The drugs have reduced PSA.  

For me the side effects of the drugs have been constant hot flashes (at least every hour...sometimes every 20 minutes) and tingling in feet and ice cold hands.  Sweats accompany the hot flashes.  How it works for me is that my feet tingle and then sweat pours out from top and back of head.  It takes about 5 to 10 minutes for episode to pass.  I never sleep more than 1 1/2 hours at a time.  Keep a fan with you at all times.  I fortunately live in a cold climate which I can go outside and cool off quickly.

Anyway, you will survive and work through it.  You have to focus mind on something else.  I miss sex terribly, but decided to work out more than I did before as substitute.  I look good from outside and even have the beginnings of a six pack.  It is something and I feel better.  So, if you cannot have sex, you may as well look like a tease....haha

Good luck!

 

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