ok just took on Nubeqa after 2 months Orgovyx

Posted by xahnegrey40 @xahnegrey40, Sep 21 2:08pm

so far so good- the Orgovyx had become pretty effortless, save for unpredictable hot flashes, which last a minute or two..now adding Nubeqa..so far so good ?! anything I should expect ?? I can tell I am bit shaky but otherwise, nothing major..starting 4 th day. ( PSA was 78 and dropped to .05 with just Orgovyx in 7 1/2 weeks)

Starting 9/29, 1st day of radiation..about 40 sessions scheduled...feeling almost hopeful I can beat this stuff..and live to ride a few more waves and ski a bit more...!

One last question: had Barrigel spacer installed 9/17..one of favorite things is cycling but even tho instructions say resume normal activities after 3 days, I am reluctant to cycle..anyone with exp on this topic ?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

I’ve been on ADT for nine years. Switched to Orgovyx About two years ago. It did cause me a lot of hot flashes and then I found out that taking Prilosec within six hours of Orgovyx Would make the side effects worse. Switched my Orgovyx To the evening and my Hot flashes have greatly reduced. Proton pump inhibitor drugs don’t work well with Orgovyx.

I’ve been on Nubeqa For about two years. I’ve been undetectable for the last 22 months after 15 years of prostate cancer And four reoccurrences. I have noticed no side effects from adding Nubeqa. I’ve actually been able to reduce the amount of blood pressure medicine I’m taking, Caused by Zytiga.

I know a lot of people that come to the weekly advanced prostate cancer meetings at ancan.org that have switched to Nubeqa and are really pleased with it. Some of them are taking it as their own drug, No more ADT, Since Nubeqa Works well, even with testosterone in your system, Many of the people are in their 80s.

No, riding a bike is generally not recommended immediately after Barrigel placement or prostate radiation therapy due to the potential for increased pressure on the prostate area. Most recommendations suggest avoiding activities that put pressure on the groin, such as cycling, for several days to weeks after treatment until tenderness has resolved. You should wait to resume cycling until your healthcare provider advises it is safe, and consider making adjustments to your bike, like tilting the seat, to reduce pressure on your perineum when you do return to riding.

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thank you Jeff !! I get way more good info here than from the oncologist group..( for the most part)...

Prilosec ! well I had an awful exp with that stuff yrs ago..wont go into the details but suffice to say the prescription strength caused me great distress/ depression.. doc said I should keep on taking it even after my heartburn went away..anyway, after 2 1/2 months I stopped..slowly the depression and weird feeling went away ( that took 2 more months)

so I will try Nubeqa morning and Nubeqa /Orgovyx early eve then...

I decided not to cycle for now..prob wait until late Nov or early Dec to start back...not worth having radiation burns forever just because I couldnt stay off the bike...I dont see how cycling could be good for you even after spacer gel hardens because of the pressure the seat puts on that area...

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You are taking the Prilosec first thing in the morning and not eating anything for half an hour.

I probably been taking it for five or six years and I have never noticed any side effects from it.

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I dont remember exactly what time of day I took Prilosec- it was prescription stength..I had a bout of food poisoning and heartburn- it resovled that in a week or so but doc said keep taking it..so I did..but it did not agree with me..luckily I stopped before I killed myself..but if it works for you, go for it..

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Profile picture for xahnegrey40 @xahnegrey40

I dont remember exactly what time of day I took Prilosec- it was prescription stength..I had a bout of food poisoning and heartburn- it resovled that in a week or so but doc said keep taking it..so I did..but it did not agree with me..luckily I stopped before I killed myself..but if it works for you, go for it..

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Strange, my wife and I both take Prilosec. Never noticed any negative effects from it at all. Is it possible it was conflicting with something else you were taking?

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Profile picture for jeff Marchi @jeffmarc

Strange, my wife and I both take Prilosec. Never noticed any negative effects from it at all. Is it possible it was conflicting with something else you were taking?

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no..what seemed to happen with me was it blocked my magnesium absorption ( coating action) it was making me depressed and crazy..

'AI : Proton pump inhibitors (PPIs) are a class of medications used to treat acid reflux and peptic ulcers. While they can be effective in reducing stomach acid, there are potential dangers associated with their use.
Increased Risk of Infections:
PPIs can suppress the immune system in the gastrointestinal tract, increasing the risk of infections, such as Clostridium difficile and pneumonia.
Nutrient Deficiencies:
PPIs can interfere with the absorption of vitamin B12, magnesium *, and iron.
Bone Fractures:
Long-term PPI use may increase the risk of fractures by reducing calcium absorption and bone density. '

* magnesium keeps you from going off the rails mentally..I apparently was not getting enough..I am all better..that was in 2012...

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Maybe Prilosec isn’t that intense a PPI to cause many of the problems you’ve addressed.

My wife has been on iron supplements for a while, and they have been quite effective According to her blood tests. She also takes Prilosec every morning.

My calcium has been low, but I started taking 500mg of calcium citrate three times a day and my calcium has now hit the mid range of normal.

I guess I must get enough magnesium never had Depression or other mental issues.

My B12 and iron have never been low.

I’ve been taking Prilosec for so long I’ve never had a problem with pneumonia or infections..

Because of being on ADT, I have taken bone straighteners for nine years.

Maybe I’ve been fortunate not had any of those side effects. Sorry to hear you have had such problems.

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jeff :
so been on Nubeqa 5 days and noticing I am having a few more hot flash episodes and feel a bit wobbly at times when walking on uneven surfaces or even just getting out of chairs..nothing really of a deal breaker in nature but certainly noticeable. So with Orgovyx ( still taking it with no problems) I noticed after 1 month it was much easier to tolerate. Did you find a moderation of any side effects after month or so when you started Nubeqa..??

I am prob looking at 18 months or so of this ADT combo- the Orgovyx certainly took my PSA down rapidly and after a rough start, side effects are very tolerable...and I am hoping the ADT remains toxic to the cancer cells! My radiation starts MOnday for 2 months.

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I never noticed any problems from Nubeqa. I have heard a couple of people say they did have lightheaded issues, And with all the hot flashes I get I didn’t ever notice more due to Nubeqa. When I switched from Zytiga to Orgovyx My hot flashes actually stopped for almost 5 months. Then they came back as aggressive as ever.

Over at the weekly ANCAN.org Advanced prostate cancer meetings there are a large number of people that are on Nubeqa. Very seldom does somebody mention a problem from it. A lot of men are in their 80s and are only on Nubeqa and are very pleased with it. You could show up at a meeting and ask about people’s responses to the drugs side effects. Two people did mention that after stopping it and going back on it, they did have some issues, But the vast majority of people had no problem at all, starting it the first time.

Now that doesn’t lessen your problem. If you have a problem with Nubeqa Then you probably would have serious side effects from apalutamide or Enzalutamide. Those are drugs that people have major fatigue and balance issues with. Some people don’t have much problems from them, but a good percentage seem to.

Unfortunately, there is no Drug that would probably please you. Zytiga has serious side effects as well, It reduces your testosterone much more and really has numerous side effects.

Hopefully your problems with Nubeqa are temporary And overtime they will subside.

You aren’t on a drug like Prilosec, a proton pump inhibitor. That can cause more severe side effects with Orgovyx if taken within six hours of Prilosec.

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actually the Nubeqa is not really causing anything that I cannot tolerate..worst side effect are the hot flashes which have increaded a bit...and I can manage that
..I was actually very pleased with how I adapted to the Orgovyx ( after I stopped the Erleada) - it was no big deal..now I take 1 Orgovyx and 2 Nubeqa morning with a light meal and then 2 Nubeqa eve with a snack.. not too hard...I am ok with it..just noticed more frequent hot flashes..but that means it is working, so i will take it..only 17 or so more months to go !

Thank you again for your insights..!

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