Hunger

[Slugger61]

3 weeks on Orgovyx and my appetite is off the charts. Craving everything especially carbohydrates like bread and more bread. Other SE's of Orgovyx includes overlooking cobwebs, dirty dish towels, and cluttered kitchen drawer. These have been observed by my girlfriend. Has anyone else experienced frequent hunger when on ADT meds?

[JohnInTheMiddle]

I'm on Firmagon / Degarelix injected GnRH antagonist ADT. Orgovyx/Relugolix is almost the only oral GnRH antagonist ADT. As you see both are antagonists, which as I have written elsewhere, I much prefer to the much more common Lupron etc, which are GnRH agonists. My point is that we are both on the same sort of ADT.

Anyway I also have the carb cravings. And I'm working hard too be on a so-called low-carb diet. But cravings I get. If you have not already done so you should get your blood glucose tested. And your "A1c", which is blood glucose strangely an average of the last 3 months!

It is a known thing that everyone on ADT is at risk for developing insulin resistance, insulin being of course the hormone that manages how blood sugar moves from the blood into the cells as their source of energy. My doctor prescribed me metformin because I was borderline metabolic syndrome. For someone on hormone therapy and circumstances of metastatic prostate cancer, to be able to manage their blood sugar is usually important and associated with better outcomes.

I find the whole thing is kind of cyclical. If I'm doing a lot of exercise and everything is sort of in balance, then I'm not hit with the cravings. But if there's some sort of upset or maybe some emotional business or whatever which apparently releases cortisol or something, then everything gets out of whack, especially if I don't exercise in enough volume, and then I find great bread was lots of butter to be irresistible. Or if my wife made cookies. Or there are dates hidden away for future baking. One becomes very sensitive to the carb potential of any food 💥

Added later: the whole carb thing of course has so many aspects. I'll just add that eating after supper or later in the evening is not good. One should ideally be not eating, you can call it fasting if you like, from supper until the following morning or even if you skip breakfast, the following midday meal.

[Skoda1 in reply to JohnInTheMiddle]

Thanks John, I thought that it was just me, but you described my cravings perfectly - I too am on Degarelix. BW

[JohnInTheMiddle in reply to Skoda1]

It's great to read your note Skoda!

Just on the topic of Degarelix, and I've written about this elsewhere, I have been on it for 3 years, despite constant encouragement from doctors to switch from the so-called more convenient Lupron or equivalent GnRH agonists.

So every 28 days, the Degarelix injection. There's the whole deal about Degarelix injection competence, which others have also written about. A bad injection can be very uncomfortable, which is to minimize what it's like. But I have the same nurse now that comes every 28 days.

More importantly as more people are aware now the GnRH agonists (also known as LHRH agonists) same to have a much better cardiovascular risk profile side effect.

And as for carb cravings, I have not heard that Degarelix is any worse or better than Lupron. So I'm happy to stay on the Degarelix.

On this topic, mastering our carb cravings is I'm sure you would agree, very very important. Allowing metabolic syndrome to develop, or even progress to full on diabetes, is associated with all kinds of bad outcomes, including cardiovascular disease and prostate cancer progression. It's fascinating to note that insulin is itself a hormone.

And there's so many more things to be said about it, including the whole keto debate. I find that the medical community on average does not regard this with the same importance as I think it should have.

Of course the simple answer concerning the question as to what you and I can do at low cost, against insulin resistance, over and above efforts of will, is exercise!

On a side note, I can't help but ask if an automobile history fan? It's almost like the answer to any question in our world of metastatic prostate cancer is "exercise" 💪👟👟

[Broccoli24 in reply to JohnInTheMiddle]

I’m also sticking with Degarelix after my research showed possibly better outcomes over convenience of 3 monthly.

I also have the same nurse who understands how to administer… even then side effects in days after can be tricky. I’ve found that Claritin (anti-histamine) seems to help with subduing side effects.

My last injection I had ibuprofen, cbd oil and an anti-histamine the hour before and didn’t feel a thing. Hope I’m doing the right thing, but certainly feels better.

[JohnInTheMiddle in reply to Broccoli24]

Fantastic! We should make a Firmagon club. Sponsored by Ferring even 😂. And even with the arrival of Orgovyx/Relugolix the oral GnRH/LHRH antagonist, I'm still wanting to stay with the 28-day Firmagon. As I've written elsewhere the very very short pharmacokinetic dynamics of Orgovyx makes me very nervous.

[petabyte in reply to JohnInTheMiddle]

That's interesting, I chose Orgovyx because I was suspicious of depot formulations and their pharmacokinetics.

Did you see the study of the AUC of Lupron vs Eligard? I can find it if you want.

[Slugger61 in reply to petabyte]

Yes I would be interested in that study. Thank you.

[Slugger61 in reply to JohnInTheMiddle]

Thank you for sharing all your insights. You are very helpful.

[petabyte in reply to Slugger61]

This is the study comparing Lupron (intramuscular leuprolide) vs Eligard (subcutaneous leuprolide). Note how Lupron drops off quickly at 28 days.

pmc.ncbi.nlm.nih.gov/articl...

It is a small study and check the conflict of interest disclosures.

Note this is not at all transferable to Firmagon, nor even to 3 month formulations of leuprolide. Very few people take one month formulations of leuprolide.

Given this I prefer the stability of daily dosing (and making sure I don't miss doses - easy enough).

A monthly appointment for a specialized injection seems very limiting if you want to travel or even if you are immobilized for a while.

AUC 1 month depot formulations

[Skoda1 in reply to JohnInTheMiddle]

Thank you. Like you, I have been advised to change to Lupron and have stuck to Degarelix for the same reasons as yourself.

The injection can be a problem. Here in the UK a nurse usually gives the injection, but they don't know how to do it. Quick in quick out is their only technique. Ouch! After two very bad experiences I started to give myself the medication. I'm a real coward, but it isn't too difficult, the key being 'slowly in; wait a minute; slowly out'.

I have coeliac disease so would see a dietician annually, but when diagnosed with PC metastases it was clear that there was a conflict in the advice for best diet (apart from gluten) and the dietician did not know how to deal with the problem.

Automobile history fascinates me but I wouldn't say I was a real fan, perhaps because I remember owning rust heaps that are now priceless!

Keep happy

[JohnInTheMiddle in reply to Skoda1]

Yeah the whole injection competence thing when it's a little tricky as with Firmagon is kind of weird. Bravo you doing it yourself! I have learned on this forum that there are some men who do this, but they all seem to be from Australia! I guess they're tougher down there.

You might like this, my very first car was a Vauxhall Velox! 😃 Lovely two-tone. And I am sad to share however that I never got it working.

[petabyte in reply to Skoda1]

Since mid 2024 Orgovyx is available in the UK on the NHS. It is an antagonist like Firmagon.

With coeliac disease oral drug malabsorption could be an issue for you?

[gardian_galaxie]

Consider asked your doctor about Ozempic (GLP-1). I was already a heavy carb eater in my previous life, including the liquid bread type. I had to have carbs! My A1C shot up from low pre-diabetic range to Type II range just prior to going on Orgovyx (ADT). My PCP prescribed Ozempic to control the insulin resistance/glucose. I had already been on a low carb diet 3 months prior to the A1C jump in anticipation of ADT and the risk of insulin resistance issues. Lost 10 lbs with that plan, but have lost another 15 lbs since being on Ozempic and there are no carb cravings. Glucose is back to normal levels. I've been on Orgovyx now for 5 weeks and have not noticed any bump up in glucose yet. I exercise everyday with 5 mile walks and gym weight lifting.

[Slugger61 in reply to gardian_galaxie]

Thank you for your response. I exercise. Weight resistance training and walk every day. I did take 2 days off exercising last week and quickly felt sSE's .Main one being depression. So daily exercise is the key to reduce SE"s especially hunger urges.

[London441 in reply to Slugger61]

Keeping virtually all simple carbs and sugar to a minimum is the best plan on ADT, but the cravings for them can be overwhelming of course.

As with many things, establishing a restriction is tough, but easy once maintained for a while.

If you are not gaining fat or having any insulin resistance then that’s good, but I’m sure you know the risk of developing both has been raised.

[Slugger61 in reply to gardian_galaxie]

Hopefully I can keep blood sugars in check. Thank you for your tips . Much appreciated.

[petabyte]

No cravings here and I have consciously lost weight without problems. I don't have many side effects from Orgovyx at all and am very glad I chose it.

My T is < 2.5 (undetectable) but part of that is the Abiraterone.

[Slugger61 in reply to petabyte]

Are you on Orgovyx and Abiraterone?

[petabyte in reply to Slugger61]

Yes, Orgovyx, Abiraterone 1000mg, Prednisolone 5mg.

I posted this a while back, but it won't help with cravings (except perhaps with motivation).

healthunlocked.com/prostate...

[JohnInTheMiddle in reply to petabyte]

Okay this is very important, when losing weight to understand if we are losing muscle or fat or both. Just 8 months after my diagnosis and seeing a physical exercise doctor, a real doctor, and right away he looked at me and measured me and determined that I was already "deconditioning", which is to say to say losing muscle mass! On the way to sarcopenia! And then I had my muscle fat ratio measured several times over the course of a year. This is a huge issue that lurks and waits for us. Losing weight is okay but not if it's muscle.

[petabyte in reply to JohnInTheMiddle]

If you have a calorie deficit you will lose both fat and muscle. To minimize muscle loss go very slowly and do resistance exercise. I make this point in the post. It is not about weight it is body fat.

People make the mistake of going too fast, the diet is unsustainable and abandoned. You end up the same weight with less muscle.

[janebob99]

I gained about 30 pounds while on Orgovyx.

[Slugger61 in reply to janebob99]

Is that good or bad that you gained 39 pounds?

[janebob99]

Bad

[MooseJawg]

Thank you for your great sense of humor with the unexpected SEs. You brightened my day!

[wilcoxsaw]

I'd suggest you watch closely your weight and food intake, or like mentioned above you'll likely gain a lot of weight. Once gained will be tough to lose. Blood sugar, BP, and lipids will rise necessitating more meds. You don't want to go down that path.

Don't have those types of food in the house is best way to avoid them.

I've been on orgovyx 3 times, never gained weight. Disciplined eating and exercise are the key.

Good luck.

[fast_eddie in reply to wilcoxsaw]

"Don't have those types of food in the house is best way to avoid them." Amen to that.

[mababa]

For me it was chocolate cake, then it was any kind of cake. Regarding carbohydrates, something in my brain told me to throw care to the wind. Other SEs were typical except CV. Start keeping tabs on your blood pressure. Most of the SEs have tapered off. I was doing just fine—then I started Abiraterone. Yuck.

[fast_eddie]

I'm not on that med but I realized a short while ago that my eating and weight was out of control. My redline weight is 210. I blew right past that to 212 and now I am seriously dieting. I couldn't resist all the chocolates and cookies that were there just tempting me. I had to have words about that to my wife. She should know better, she has been diabetic for years now. This is only day 2 of me attempting to go sugar free. I am past the pre-diabetic and into the diabetic zone. I am already on metformin. I am 75 and 6'4". I am doing my penance for over-snacking.

[j-o-h-n]

My opinion (not asked for BTW) is to dump that detailed oriented girl friend and get a new one who's vision is terrible.

Good Luck, Good Health and Good Humor.

j-o-h-n