Zytiga Side Effects Inquiry

[GeorgeGlass]

I'll try to keep this post short and simple:

I'm trying to decide whether to push for/encourage an oncologist to add zytiga and prednisone to my Lupron. My situation is this: I'm 52 years old, athletic, diagnosed with PCx in May 2015, Gleason 4+3 and 4+4. Failed brachy/IMRT combo in late 2015, PSA doubling rate of 3 weeks during recent intermittent Lupron break. Started Lupron in august 2016. PSMA / PET shows small hot spot metastasis outside the prostate area (abdominal aorta lymph node and one other spot) CT scans and bone scans still clean. My psa went as low as 0.1 before I went on the intermittent Lupron holiday.

One MO wants me to start adding zytiga and pred. Another does not (because he's worried about my 30% plaque buildup in 3 small periphery arteries and the effect of the zytiga on leg swelling, high blood pressure, increased triglycerides, potassium impacts etc.) My cardiac stress test went very well two weeks ago. Doc thinks no increased plaque since two years ago.

Here is one list of zytiga side effects from a website: "Common side effects of Zytiga include: decreased serum potassium, increased serum aspartate aminotransferase, increased serum triglycerides, fluid retention, and hypokalemia. Other side effects include: hypertension. See below for a comprehensive list of adverse effects."

I eat really healthy, exercise 5-6 days a week. My coronary artery disease is due to heredity + possibly not keeping my triglycerides down over the years. I only have HDL levels of ~28 trying to clean my arteries.

I don't really like the idea of going on the zytiga/pred combo but based on the recent studies, it seems like I might live a few years longer (nobody knows for sure of course) if I add the zytiga/pred.

I'm leaning towards adding the zytiga/pred if I can get insurance to cover, but I wanted to get one last set of thoughts from those of you who have had similar situations and got advice from top notch MO's around the country. I realize that the side effects of zytiga are unpredictable but just curious what people on Zytiga think. So far, most of you taking it say they tolerate it well but I'm curious if those who didn't respond well are just not chiming in with their thoughts and experiences.

I apologize to those of you who have already read similar posts from me but it's a big decision. I'm also calling today to get an appointment with a 3rd MO.

thanks in advance and sorry the post didn't end up being short.

George

[Dr_WHO]

Hello! I am on Lupron with Zytiga and prednisone. The “nice” thing is the side effects of Zytiga cancel out the side effects of prednisone. If you go on it you will need monthly blood work to make sure everything is OK. Note, mg of prednisone a day. My MO has me on just 5 mg and everything is going fine. Usually if you are going to have problems it will show itself in the first couple of months. I take two 99 mg tablets of potassium a day and wear support Stockings. (If you get the ones designed for exercise they do not look as lame, they cost less and work just as well.)

Someone here posted a while back a web sight where you can get Zytiga at low to no cost if your insurance does not cover it. Hopefully someone here will forward that information to you.

[GeorgeGlass in reply to Dr_WHO]

thanks Dr. Who - I can presume, but what do you and others on zytiga/pred combo use the exercise support stockings for? Does that keep blood flowing better and reduce or stop swelling in the legs? I wonder if leg swelling from a result of zytiga/pred. is a similar warning sign/pre-cursor to heart attack like it is in someone not taking strong meds. When I read the appendices of the Charter and Stampede studies, it looked like the increased chances of heart attack from zytiga,pred,Lupron combo was only about 1-2% higher than for Lupron alone. If that's the case then maybe its an acceptable risk to go on the zytiga/pred if the studies show increase in lifespan.

I'm also hopeful that since my cancer is currently small/low volume then maybe the longevity increase could be 2-3 years, on average, instead of 11-18 months or so for large volume M1 status.

[Dr_WHO in reply to GeorgeGlass]

The main reason I wear support stockings is do to surgery where they removed 14 lymph nodes (some cancerous) and radiation. They help with Lymphedema. At the same time it helps take care of any swelling from the hormonal treatments.

It is always a toss up on which is worce, the treatments or their side effects. Like you indicated there is not that much of an increase in cardiovascular issues. As long as you get monthly blood work and re aware of what to watch out for, it may be worth your while to consider Zytiga.

Walt (a retired chemist not a medical doctor)

[GeorgeGlass in reply to Dr_WHO]

ok thanks a lot Dr. Who

[Tall_Allen]

There are two alternatives:

(1) Chemo - a subset analysis of the STAMPEDE trial showed no difference in survival whether chemo or Zytiga was used first.

(2) Xtandi - your insurance may approve starting with Xtandi if you can make the case that your CV condition precludes Zytiga.

[GeorgeGlass in reply to Tall_Allen]

good thought process Allen. I'll talk to a MO about it. I'm thinking about getting a third MO opinion. Any recommendations on a detailed thorough MO? My doc at MD Anderson seemed worn out and somewhat disinterested at my last visit.

[Tall_Allen in reply to GeorgeGlass]

I only know by reputation of Eleni Efstathiou at MDA. Oliver Sartor is at Tulane. Can you go anywhere?

[GeorgeGlass in reply to Tall_Allen]

ya, I think I can go anywhere

[Tall_Allen in reply to GeorgeGlass]

I think MDA is second to none, and they have more clinical trials going on than anyone else, with the possible exception of MSK. Unfortunately, Howard Scher isn't taking patients, but Michael Morris is. In addition, I think Emmanuel Antonarakis at JH, Celestia Higano at U Washington Seattle, Eric Small at UCSF are all working on breakthrough therapies and are great MOs.

[GeorgeGlass in reply to Tall_Allen]

I've already had an appointment with one of those docs before and I was thinking about going back to him so I think this convo is a good impetus for calling for an appointment Monday. Thanks for your insights as always.

[JamesAtlanta]

I started Zytiga in December after my PSA had crept up over 18-months to 1.8 from undetectable. (I have been on Lupron since May 2015.)

In 6-weeks my PSA was back to undetectable. And I really haven’t had any new side effects ... maybe a touch more fatigue. All my labs are fine. But I still work full time, travel all over the country for work, and exercise regularly.

So, given my experience, if the doctor recommends it, I’d not hesitate to take it.

Hope this helps!

James

[GeorgeGlass in reply to JamesAtlanta]

do you go to a good MO in Atlanta or somewhere else? I'm not far from Atlanta.

[vandy69 in reply to GeorgeGlass]

Saw your question to James in Atlanta.

I have been treated since diagnosis in 8/2012 by Dr. Vasily Assikis of the Piedmont Cancer Institute in Atlanta.

Sometimes he leads my care and sometimes he follows lead, as Dr. Charles "Snuffy" Myers was lead for 4 1/2 years.

Highly recommend Dr. Assikis.

Mark, Atlanta

[GeorgeGlass in reply to vandy69]

ok, thanks Mark for the info, I'll consider him. Nalarats recommended a guy in Charlotte too. I'm starting to lose my desire to fly somewhere far away. It cause some problems to say the least.

[BigRich]

George you have to decide what you are willing to risk for more life. You are doing the right thing speaking with your doctors and doing research. Then whatever decision you make, don't second guess yourself. Let me know what you decide.

Rich

[GeorgeGlass in reply to BigRich]

thanks Rich - good advice

[BigM62]

You are young and healthy - consider chemo while its easier to take.

But in the end if your PCa progresses you will likely need to eventually try zytiga. So thinking through the "when" instead of the "if".

[GeorgeGlass in reply to BigM62]

MOs at NIH wanted me to start chemo two years ago but other MOs said no because I had low volume cancer and studies didn't show conclusive benefit for me. Now that Zytiga is in the forefront they don't seem to think chemo is the best option for me now.

[kjscobel]

I started on Zytiga/Prednisone in January. It dropped my PSA from 5.5 to 1.3 in 5 weeks, with no physical side effects. However, it raised my liver readings 8 times normal! I was taken off the Zytiga immediately but continue with the Prednisone. I am scheduled for monthly blood tests to monitor my liver readings and PSA before proceeding further with medication changes.

[GeorgeGlass in reply to kjscobel]

ya, this is the outcome that happens to a certain % of the people. Interesting how it bothers some livers and not others. Did they say you could get zytiga maybe later in a reduced dosage? Was there any harm in trying the zytiga? I pesume the liver will return to normal in time?

[vandy69]

Good Saturday Morning GeorgeGlass,

I have been in this battle for almost 6 years (please see bio for complete treatment history).

I took Zytiga and prednisone beginning in 1/2013 for about 18 months. My main side effect was from prednisone--began to get "moon face", but it went away after I moved onto other drugs.

Cost can be an issue as Zytiga retails for about $10,000/month! Make sure of your drug coverage through your speciality pharmacy before you go down this road.

Best wishes. Never Give In.

Mark, Atlanta

[GeorgeGlass in reply to vandy69]

wow Vandy, I read your bio, you've had a rough road. God job fighting! What is moon face?

were you on 5 or 10 mg of prednisone?

[vandy69 in reply to GeorgeGlass]

Google it and you will see photos. Over time your face becomes much more round, like the moon! Not permanent thank heavens.

As I recall, I think I took 10mg.

Yes, I have been in this battle for almost 6 years and have had about everything. My goal is to live long enough to be saved by immunotherapy. It is coming and I want to be here when it arrives😃.

Mark, Atlanta

[GeorgeGlass in reply to vandy69]

I have a similar mindset. Some think that gene splicing has possibilities too. If I were a genius Id talk to the robotics companies about inventing tiny robots that are programmed to smell and visualize cancer and then be inserted into the to eat any cancer they can find. I suppose the hardest part to that would be the path which the robots travel to get to each instance of the cancer. Ya, maybe my idea isn't as likely as immunology in the short term.

I know someone who sort of has a moon face but part of it might be because he's so skinny that it makes his head look big. I started doing neck exercises this week.

Good luck always, keep exercising the best you can.

George

[Apollo123]

Hi, I’m 48 now and I have been on Zytiga and Pred for just under a year. I’ve never had any issues with my liver and my blood work is good. My PSA has gone from 37 to 0.01. The fatigue can be sporadic but it gets easier it’s been no different to the initial hormone therapy, there is a little muscle wastage but I do light weights to try and counteract this. I have always been fit and healthy apart from the prostate cancer. I’ve had no raise in chloestoral either. It’s got some good stats associated with it so it’s well worth a try. 👍

[GeorgeGlass in reply to Apollo123]

thanks Apollo, good info. I wish you great success. Looks great so far.

[paulcross4]

I've been on Zytiga/Pred since November. PSA is 0.6 from 40 at diagnosis 18 months ago and still coming down. My many bone mets are stable and there are no new ones. I don't notice any side effects from these drugs apart from slightly elevated blood sugar and blood pressure, both of which have been easily managed via the usual drugs. The side effects I do notice are from Lupron and are very tolerable. I get blood tests once a month and everything has been normal. Actually cut down the pred to 5mg 2 months ago and all still well.

I know it's not the same for everyone by any means, but for me it's a wonder combination as long as it lasts.

[GeorgeGlass in reply to paulcross4]

People on this website seem to respond well without terrible side effects. I sometimes wonder if people on this site are here because they are doing well or if they are doing well because they are on here. We certainly know there ate plenty of people not responding well to this combo but I don't hear from too many of them.

thanks for your response Paul. Sounds like you are doing well to. Keep it up.

George