Help with side effects

[palser1]

Hi everyone , I hope you are all well .

Can anyone help ?

John has been on apulutimide the last month and zoladex for the past 3 months an injection per month . And it is working his psa is now 1.8 down from 122 at diagnoses .

But the side effects are kicking in , hot flushes , mood swings , he has cold sores up his nose and on his lips he cannot sleep .

He is a really positive guy and was Asymptomatic so all this has hit him like a ton of bricks and his response is I wish I’d never found out I had it … I was absolutely fine before .

Is there anything we can ask the doctor for to help him with these side effects and are they always going to be there or do they ease off .

Is awful to see him like this .

Thanks for all your help . X

[Lyubov]

So sorry for your husband and you. You'll get good advice here, but you & your husband should talk to his doctor(s). Anti-depressants helped my husband's mood swings a great deal. Exercise is terribly important as well. Wishing you well.

[palser1 in reply to Lyubov]

Thanks so much for your reply , yes that’s what we are going to do I’m sure they must be able to help 🤞 xx

[Tall_Allen]

Venlafaxine my help with both the hot flashes and the mood swings. Valtrex for the cold sores.

[palser1 in reply to Tall_Allen]

Thank you so much for your reply 👍

[Tall_Allen in reply to palser1]

Did you ever get to talk to Dr. Fizazi?

[palser1 in reply to Tall_Allen]

No didn’t get a reply sent everything off . Got a 2nd opinion here they said they would go for the same treatment . Apulutimide and zoladex . But they also said even if Dr fizazzi had come back with docetaxel and Erleada and adt they could not do it under their medical guidelines .

We were thinking about coming back to the uk for the treatment sake but they don’t even do the treatment he is having at the moment .

Not great to be honest .

[London441]

His response of ‘I wish I’d never found out I had it’ is understandable, but hopefully he’ll never have to know how untrue that is.

No matter what combination of drugs he’s given, the side effects are coming with it-this is unavoidable.

Of course there are more drugs to add to the mix that can help. However, the exercise is by far the most effective.

It’s also the most important, because it protects against the dangers of cardiovascular issues, bone density loss, metabolic syndrome and cognitive impairment that these drugs cause as well.

None of us would sensibly advocate not taking medications that help, but adding pharmaceuticals alone is inferior.

Most older men don’t exercise nearly enough, particularly weight lifting, which is non negotiable and really, really works. It is literally Kryptonite to this disease. It greatly reduces the negative effects of the treatment and often eliminates them completely.

Even in the 21st century, doctors are not likely to emphasize how critical exercise is. We patients who do it are your best source for that. We know the dramatic difference it makes, we live it!

[treedown]

I agree with London, exercise,exercise,exercise. I mostly ride my bicycle for exercise and I am doing my 3rd 35 mile ride of the week this morning. It is what I love to do but I also try to get as many other activities in that I can. I also hike, do lots of yardwork, and recently my wife joined us up for kickball for adults. Skiing will start in a couple months. Not sure how old your husband is or how healthy prior to diagnosis but he needs to stay, increase or get active if his health allows him to. I immediately increased my activity at learning of my 156 PSA, also asymptomatic ,at age 56. I can not say with any confidence that I ever had a hot flash, though maybe a few small ones and I am going on 2 years of ADT. I do not have mood swings, need for anti-depressants or have fatique. I do have all of the physical changes and loss of libido, etc and I have a small amt of brain fog which I am aware of working full time at a stressful job. My Dr is convinced my high tolerance of ADT is due to my activity level. Your husband doesn't have to do as much as me but try to get him to do more than he is doing now and see if it helps. It should have a positive effect on his physical and mental health if he does enough.

[palser1 in reply to treedown]

John is 56 and is extremely active , we have our own business building sets and scenery for tv , conferences we are building stuff for expo etc he is a hands on boss builds all the stuff with the guys and also does all the quotes and meetings he literally doesn’t stop . He has never been moody , depressed or even touchy . He normally has one mood which is good . So to see him like this is awful . He is finding it very hard to come to terms with the physical side of things too . Which is totally understandable . I have spoken to the doctor and she said to stop apulutimide for 2 days and then start again on a slightly lower dose so Hoping this works , is anyone else on a lower dose than 240mg and it still work ? Thanks

[treedown in reply to palser1]

There goes my theory on exercise. I guess using my self as an example has its limitations. I am also on different medications. I hope you find something that works to make this all more palatable for your husband. I am sure somebody else here will have more useful insights.

[Atlantic77]

Apply for a free thermal device for alleviating hot flashes during ADT by joining this clinical trial, otherwise it is available to buy online

clinicaltrials.gov/ct2/show...

[tallguy2]

I take the generic anti-depressant venlafaxine each day. It eliminates about 90% of the hot flashes and sweats. It is a blessing to me!