My husband, age 73, is diagnosed with very high risk prostate cancer, Gleason 9, PSA 46.6 and being treated ay Mayo, Phoenix.
He is almost done with 28 Proton Radiation treatments, was on Casodex a few weeks then started Orgovyx.( at least two years recommended) He is considering adding Zytiga. He has met with one MO and is planning to meet with another MO for a second opinion.
His RO is very much in favor of him adding Zytiga ....He meets the criteria established in the Stampede trial to receive it, even with "organ confined cancer".
I believe his cancer is quite aggressive. 22 core MRI fusion biopsy June 2022 showed all cores benign...Transperineal fusion biopsy in August 2023 showed 8 out of 20 cores had cancer ,one 5+4=9, two 4+3=7 ( with one 80% GL4), and five 3+4=7. It took two and half months after MRI and PSMA PET scan to get his biopsy...PSA went up another 7 points in two and a half months.
The MO he met within was very neutral and said it was up to my husband. He showed us some graphs, and shared that the mortality rate was pretty similar with or without the Zytiga, but the risk of progression would be higher without it. Actual percentages weren't shared.
My understanding from reviewing the Stampede trial research is that adding Zytiga would increase the prostate specific survival from 85% to 93% ( not negligible) and the metastasis free survival would increase from 69% to 82% , which seems significant.
My husband is still struggling with making a decision about adding Zytiga, mostly due to concern about side effects.
He seems to have tolerated Orgovyx and radiation fairly well, which has been a relief as he has not been well for the past three years.(Bladder cancer, chronic fatigue), chronic bacterial prostatitis)
For those of you who added Zytiga, what were your additional side effects? ( especially if it was added after ADT ) Of course I understand that everyone is different in their experiences....but would be helpful to hear how you managed with both treatments.
Thanks !
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Tall_Allen is I believe correct on both scores. Side effects and such a situation would be due to ADT. And given your characterization the question is a no-brainer.
My own experience (in other words a "data point of one" otherwise known as "an anecdote" 😃) is I haven't really noticed any side-effects that I attribute to Zytiga AKA Abiraterone.
I do fight tiredness due to the ADT and I take methylphenidate for that.
And the most important thing apparently is to exercise. It's not just "kind of sort of" good for you. There is some emerging evidence that more exercise and within more intensity, combining both aerobic and strength training, may have a very positive impact on PCa outcomes. If you're up for it and able. It's hard.
By the way I make such a big deal out of exercise in this forum, just to say exercise, because during and after my diagnosis of high-volume metastatic PCa and despite receiving excellent leaving-edge triplet therapy, I did not receive any serious encouragement to exercise. Or any explanation as to why it is important.
P.S. (added at a later date) reading some of the replies below I am reminded that I am now battling high-ish blood pressure. This may be connected to Zytiga. And also as pointed out one needs to monitor liver markers.
Thanks for your thoughtful response. Adding Zytiga sounds very doable....and perhaps hopeful that since my husband has tolerated Orgovyx so well that he could tolerate more ADT as well.
I'm sharing all the answers with my husband...we appreciate the collective wisdom on this community.
I hear you on the exercise..he has started weight training and now that Phoenix is not an inferno, we can walk outside more comfortably! I will keep encouraging him to walk with me.
When I first added Zytiga to Orgovyk two years ago, I had one day of extra heavy hot flashes, then they went back to the previous level. Now I don't have them very often at all. The only other side effect was actually from the Prednisone I have to take with Zytiga, an increased appetite.
Interesting experience, for me 2 months on Lupron, 1 on Zyt, still get several flashes and sweats per day, mostly soon after I drink coffee or eat food though I exercise pretty heavily. Trying to find a doc to prescribe Orgo. They talk about "long term results" but with a 3-5 year castration resistance forecast for spread regardless of which ADT, I think, can it really matter that much?
I had zero additional side effects from Zytiga when added to ADT. The ADT is without question the far greater driver of side effects.
John in the Middle feels as I do about exercise. If you look up my posts and replies they are mostly exercise related. Most people do not exercise nearly enough if at all, those older and/or with a cancer diagnosis statistically even less.
Both cardiovascular and weight lifting are important. Lifting in particular is an absolute must in order to thrive on ADT. Best to keep the focus on that and forget the possible Zytiga sides.
Isn't resistance exercise the key...not necessarily lifting? Many of us have concerning joints and worry about aggravating them!! For example, holding a weight at an elevated position for x seconds....not necessarily repeated lifting that stresses joints? Someone else also mentioned "planks" ?
Lifting is good for joints, it strengthens the muscles that support them. Weak muscles are hard on joints, but too many people weaken the muscles further trying to save their joints.
That said there are exceptions of course. Rehabilitating injury, post surgery, or even just starting from an acutely deconditioned state. Caution and patience are required in these cases.
Also, Increasing load too much or too quickly is a common mistake. One should always have a trainer if in doubt and it’s affordable.
Lifting, calisthenics and bands all work . It’s the effort, consistency and progression that matter.
It is true that one needs to know their body and how to train safely, but progressive overload remains the path to strength-and healthy joints.
so, is increasing the number of pushups good??? I doubt there is much good data re exactly waht is needed to counteract ADT SEs...otherwise , I have little interest in strength training....try to do my 2.5-3 miles of walking 6 days a week. I've crossed the US a number of times on these legs ...of course has taken me 10 years at least!
I also have osteopenia, so there is that fear re lifting!!
Increasing strength is always good, for every part of the body.
Strength and cardiovascular fitness are ‘exactly’ what is needed to counteract ADT side effects. There is plenty of data to support that, but if you have little interest in strength training then what does it matter?
I should have been clearer...... I have little interest in strength training if not shown to alleviate ADT SE effects. However, I keep reading about resistance exercises being helpful for countering ADT SEs.....so I am interested on that basis>maybe you are aware of specific studies showing the benefit of lifting? I would like to know about studies showing benefit of other types of exercises.
maley2711, APCa can be a one-way trip to frailty, bone fragility, cardiovascular illness, diabetes and more. Exercise is the _only_ medicine that helps with all of these. Exercise = walking (up stuff if possible), aerobics, and resistance work. People on ADT lose muscle and bone at ferocious rates. No exercise = greater odds of dying from PCa. If you have someone (say a spouse) in your life that you dearly and fiercely love, exercise a lot. The more exercise, the better. The more frequent, the better. Find modes that you like of course -- nobody says it has to be a slog. The good news on ADT is you will have no BO.
My physical therapist is certified for oncology patients and moved me away from bands to pure weight lifting when I started - I dont know what her sources are, but I believe she said the weight bearing is better for the benefit of joints and bones.
The work of Dr Christina Dieli-Conwright at Dana Farber, exercise physiologist Jennifer Chan in Australia or Dr Richard Wassersug (who sometimes posts here) are but a few of the many choices if you really want data that strength training lessens ADT side effects.
However, thinking of ADT simply as an aging accelerator may help. Testosterone levels drop with age. Muscle mass is also lost with age. ADT puts this process into overdrive. To be weak when older is to be fatigued most of the time, and carries a host of dangers which eventually severely impair everyday life and every aspect of our health. Inactivity exacerbates the process.
Building and maintaining strength as much as possible can help us to thrive in our later years more than most people know. Just ask anyone who does it.
To quote Dr Peter Attia, a longevity specialist who details the value of strength training as well as any expert:
‘The two metrics that are most significantly associated with longevity are strength and cardiovascular fitness’.
Again, I personally see strength and cardiovascular training as the prime interventions on my body’s aging process, regardless of the presence or absence of disease and its treatments. I had minimal side effects from ADT, and from the neck down I feel, look and move like someone far younger than I am. It’s not luck or genetics.
Staying fit and strong-and all that it entails-is hard work, much harder when older, harder still on ADT. However, the alternative, to me, is unthinkable.
I already have severe osteoporosis and I don’t want my husband to advance to that… we both have cardiac risks … I think a more vigorous exercise program will benefit us both.
High blood pressure is a common SE of Zytiga. I was taking it with Lupron and after six months dropped Zytiga due to BP going from 115/76 to 148/98. I continued with Lupron with no issues.
Thank you for reminding me as well. I also had to monitor it closely when I first started Zytiga(Two years ago yesterday by coincidence). But after awhile it went to a normal level and has stayed in a good range. Although one day early on I accidently took two doses of Zytiga in a day, and my BP shot up, but it came down fairly quickly.
I started treatment of adt and zytiga together, so I cannot comment on separate side effects. But I am certain that my blood pressure increased for about 3 months due to the zytiga. After that period, blood pressure returned to normal. I believe the zytiga adds to the fatigue that is primarily caused by adt.
Also, we watch the liver enzymes and kidney numbers every 3 months. Mine have been ok, but the zytiga can damage those organs. I used to drink socially, but due to taking zytiga, I chose to quit drinking except for very rare occasions - and no more than 2 drinks on those occasions. That was my choice-not mandated by MO . I did not want to put extra stress on the liver by adding alcohol.
I also work out much more than I ever used to, which is challenging because you just don’t feel like exercising. And you don’t increase the weights you are lifting very often (overall, I have decreased the weights despite lifting 3 days a week for almost 2 years).
I am planning to come off zytiga in about 40 days. MO expects a little boost in energy. He also believes the zytiga contributes to the fatigue caused by adt.
After I am off zytiga, I look forward to a few glasses of Blantons, neat whenever I choose and a beer with the golf buddies instead of iced tea.
But I am glad I made the decision to include zytiga and improve my chances of beating this beast or keeping it at bay longer. The additional side effects aren’t that bad.
You can look in my profile for my husband's treatments specifically. He did chemo plus ADT as his first line treatment with Gleason 9 metastatic diagnosis. Added zytiga after chemo completed. His side effects do seem more from ADT. His blood pressure did go up slightly when zytiga added but not definitely from zytiga. Otherwise it's slight fatigue and othe SE common with ADT that he helps control with exercise and attitude.
Thanks for sharing about your husband's treatment!....It sounds like exercising is the key to managing the side effects of ADT...and I agree with you that attitude must make a huge difference.
Important clarification: In reference to your comment "tolerate more ADT as well" - Zytiga is not ADT.
Zytiga/Abiraterone is a completely different class of prostate cancer therapy - and it's much much newer than most of the flavors of ADT. It's an "ARPI", an Androgen Receptor Pathway Inhibitor. (Other acronyms have also been used to describe it, such as ARAT.)
An ARPI is completely complementary to ADT and together they are a powerful one-two punch. They work in slightly different ways which results in a more complete suppression of testosterone and interference of a prostate cancer cell's ability to "hear" testosterone.
The fact that your MO has recommended this probably indicates that your husband is strong.
My husband has been on Zytiga for about 5 months. The only side effect he has had was increased liver enzymes, but not high enough to remove him from the Zytiga. He also goes to Mayo Phoenix.
Thanks for responding....good to hear that there were no additional side effects adding a ARPI to the Orgovyx. I'll research the Nubeqa...attractive to not have to take the prednisone.
They do labs every 3 months. I believe when he first started Zytiga they did labs every month for the first couple of months. His MO was Dr. Bryce who left Mayo October 1st. They are assigning Dr. Bryce's patients to other MO's, but we haven't been notified who he will be assigned to. Not exactly happy that we haven't been notified yet.
When I added Zytiga to Firmagon after two months my PSA really dropped down from 168 to .31 now, testing again next week. The Zytiga claims to eliminate the remaining testosterone coming from the adrenals and the cancer itself, I was prescribed Prednisone steroid 5 mg to add back Cortisol helping side effects such as BP, I would say the previous side effects increased some, hot flashes, mood swings, for me some restless nights but found exercise to be very helpful, now I am working with my RO for IMRT starting in a few weeks.
I added Abiraterone to Lupron and the hot flashes and minor sweats became more substantial, but yes perhaps more due to the Lupron ADT with it - yes better stats with it. Tell me, did the Doc discuss Lupron vs. Orgo and give him a choice?
No, the radiation oncologist wanted him to start on Casodex and then get a 6 month Lupron injection. He also recomended getting consult for Zytiga with the MO. We were making the request for Orgovyx in lieu of Lupron. MO agreed to prescribing the Orgovyx, but not enthusiastic... both docs expressed concerns re compliance and lack of long term studies on Orgovyx
No, the radiation oncologist wanted him to start on Casodex and then get a 6 month Lupron injection. He also recomended getting consult for Zytiga with the MO. We were making the request for Orgovyx in lieu of Lupron. MO agreed to prescribing the Orgovyx, but not enthusiastic... both docs expressed concerns re compliance and lack of long term studies on Orgovyx
Something you may also want to consider when adding zytiga, is if and when the Pca becomes castrate resistant it becomes a much more virulent type of cancer ♋️ n much harder to treat. It’s not a slam dunk to add it and unless your Asian, most of the time it becomes mcrpc within a cpl years. Read up on it as much as you can n don’t feel pressured to go one way or the other, just go w what you feel is right… Good luck n God bless to you two…
Haha your not dumb at all, virulent is taking care of and metastatic castrate resistant prostate cancer is (mcrpc). One good thing is that once resistance occurs ivermectin has shown to revert it back to hormone sensitive if one decides to go adt route, or one can bypass adt n just do ivm cbd oil zinc n turmeric like I did and a guy named Joe Tippens amongst thousands of others…
My MO didnt describe it that way to me - I guess he’s just looking at the Stampede trial results that indicate ADT w abi turns out better. I wonder if abi accelerates castrate resistance?
Side affects are fatigue for sure from the ADT but keep a close eye on his glucose level. Lowering his testosterone will cause weight gain and drive sugar levels up causing even more fatigue. This is another reason exercise is so important. I didn’t and before I knew it my A1C was 10.5 and I couldn’t get out of my chair. Eat better than you ever have especially if you don’t get enough exercise. Good luck.
I’m on Lupron and Zytiga, 14 months now. Zytiga has caused serious Blood pressure problems for me. 226/111 sent me to the ER. Oncologist reduced dosage by half to 500 ml. My BP is up and down now and I’ve never had to deal with it before. There is a price for everything.
1. BTW, regarding an ARPI and prednisone for cortisol hormone add-back . . . a man on an ARPI therapy also ends up with another suppressed hormone - estrogen. Which drives heart and esp. bone issues. The estradiol add-back possibility has been discussed here.
2. Also the mention above regarding "an evolution to a much more virulent" form of cancer, once resistance develops, this is an important issue. But first things first.
3. Lastly Orgovyx/Degarelix - I wish! It's an oral ADT "antagonist". Versus Lupron etc. as GnRH "agonist". Evidence is developing that hearts do better with ADT antagonists. Or you could wait 10 years for proof.
I just stopped Zytiga (abiraterone) after 18 month (I had a two month break in the middle). At the start, I was still incontinent from RARP, and I had felt I was making gains in that area. Zytiga was like turning on a faucet for me. It took a few more months to get back to where I wanted to be.
At the 8 month mark on Zitiga, my BP skyrocketed. My oncologist took my off of the drug until we came up with a BP combo that helped me - two months later I was back on Zytiga, and doing OK. Now, 8 months after I restarted Zytiga, my BP is again becoming difficult to control. My oncologist and I agree at this point that I will stop the medication, and revisit the subject in the spring.
Aside from those two issues, Zytiga brought no new side effects to my condition
I started orgovyx in Aug 2022 and then added Zytiga in April 2023. After a week I had problems with edema, mainly fluid around my ankles and strangely the bottom of my feet. I upped the prednisone to 10mg and started wearing compression socks as soon as I woke to right before I went to sleep. The compression socks control the edema. Everything I've read about the STAMPEDE trial says to do it for high risk PC.
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