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Terry

ADT psychological impacts.

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Terry

I was diagnosed with an aggressive prostate cancer (Gleeson 10) in June 2017.  Following the diagnosis I was immediately put on ADT using Zolodex and have been on it continuously since.  I have also undergone 8 weeks of radiation therapy.  To date treatment has been successful and I have had a PSA level of 0.02 for about the last 18 months.

 

My problem is that I have uncontrollable mood swings in which I become quite angry and short tempered.  I also have thoughts that have no basis in reality during these swings which is putting considerable pressure on my family.  My trouble is that I can feel the mood change coming on but do not seem to be able to control it.  I have considered seeking professional psychological/psychiatric help but before I do was wondering if anyone on this forum has experienced this whilst on ADT and if so how do you overcome or control them.

 

Any advice would be welcome.

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ardee

Over the 14 years I have been mentoring ADT men,  your response has been familiar to me way too many times. I did my time on ADT (28 months) - but personally I was fortunate as I have suffered from chronic depression much of my life ... courtesy of family genes. In my case, I was able to double my meds when the black dog visited. Your anger, short temper and mood swings are all signs of depression, and for men who have never known it before, depression is frightening.

 

The lack of testosterone in your body is largely responsible. The androgen receptors in your brain that keep your endorphins regulated are now starved of testosterone. So one answer is to seek medication that will help restore the proteins no longer made by your body. That's not to dismiss talk therapy to help handle the swings ... but the cause of the issues is much more likely to be chemical rather than social. 

 

Exercise can also be very helpful. When you get your heart rate up and hold it there for at least 20' plus, you can  generate endorphins that will settle you.  Not to mention, you should also be doing some weight resistance work to maintain muscle tone whle on ADT. 

 

Finding the right anti-depressant is trial and error. It's a problem since you have to titrate of each one and then clear your system, before moving to the next. So if you do decide to medicate - and if me, I  would - be sure your doc thoroughly considers your medical history and family background to select the right drug to try first time. 

 

I am not a doc - so consider that in all I have written. Most is drawn from my personal experience and from anecdotal experience working with others.  I can suggest a couple of resopurces for you, especially if you are available in the morning Oz time.  Our small charity, AnCan https://ancan.org , runs several monthly virtual groups that you can attend online or by phone (with a local Oz access number); they are all free, drop-in and co-sponsored by UsTOO. We have a weekly virtual group for high risk men like yourself https://ancan.org/prostate-cancer/ - next meeting will be Monday, April 6 @ 8 pm US Eastern; there is great experience participating. We also run a men-only group called Speaking Freely to discuss issues like yours. https://ancan.org/men-speaking-freely/

 

You can find schedules and joining instructions on our website and also sign up for reminders. Hope to hear your voice ..... 

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Kevin Martin

Hello Terry,

The info that ardee has given is just so good.

I had 4 capsules a day of Enzalutemide caps. + Lucrin injections for 96 weeks + 39 days of radiation.

On a list of side effects with Enza it states anxiety and depression. I have a really good GP and he picked up that I was depressed and suggested that I see a Psychologist for some treatment which I did for 6 months. This was 7 months after my treatment began. The symptoms I had were basically living in a shell just by myself ignoring the world. I suppose just in a mood. I found by having monthly talks with the guy and getting it all out and off my mind worked and the feelings I had disappeared. I was told that I was in remission just after the visits began, so I suppose that helped me to get rid of it. 

Treatment seems to affect us all in different ways, I had never had it before and not since the visits ended.

I can only wish you all the best for the future and say look after yourself. It is amazing just how your mind changes when you see a professional. I am aware that a lot have this problem for years, a daughter of ours is one of them, but all I can say is that I am glad to have got it out of my system when I did.

Cheers,

KM 

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Terry

Thank you Ardee and Kevin I now don't feel so alone with my issue.  Even putting it out here has helped.  Thanks again.

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Feurmann

I think what everyone has contributed is potentially helpful. I haven't experienced the mood swings so much from ADT, but do get fatigued, especially in the afternoons. My sleep seems worse than usual recently too, though that could be partly the effects of social isolation.) Talking about ADT to other guys, though, I have heard stories similar to yours. Like many cancer treatments, ADT seems to have a very individual effect.

 

Exercise is definitely good, as is talking about how you are feeling. It can be tough to say to your partner "I'm not coping", when you know this puts extra stress on them. I am fortunate to be able to combine both to an extent, through going to an exercise class at an exercise physiologist. Most week the guys used to go out for lunch afterwards. Of course the conversation probably won't get as deep as you would have with a psychologist. But the great thing is -- everyone has been through what you're going through, or something close. If you're not coping, you don't have to pretend to be. Our group now meets via Zoom -- minus the lunch obviously -- and even this interaction gives me a lift. It is probably half due to the endorphins as well but who cares? It works. (A PC survivor's group can provide the interaction with other patients as well, but these meetings are all suspended now, I am guessing.) 

 

To go slightly off-topic here -- if you haven't worked with an exercise physiologist, they are a physiotherapist with an additional graduate qualification; some specialise in oncology patients. They will design you an exercise program tailored for for whatever metastases or anything else unique to your condition. (Not knocking physios -- they are great! But an exercise physio does have that extra specialised knowledge.) Just check first with your health fund whether EP classes are claimable. 

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John_H_T

Hi Terry,

I started ADT with Zoladex on June 5th 2018 and on the same day commenced round 1 of Chemo treatment.

I have been doing pretty well, having last week received an all clear following PSMA PET/CT and MRI scans. So, tumor free and PSA undetectable.

While I have not had the mood swings I do get fatigued a lot and I noticed that my hot flushes seemed to have increased in intensity and frequency.  These side effects seem to be very common so I saw these as things to put up with.  A colleague, also with PCa on ADT was having debilitating  night sweats and hot flushes. He recently started Chemo and discussed his ADT side effects with his oncologist who  prescribed Sandrena 0.1% ( Estradiol) This is a low dose estrogen gel rubbed into the skin usually prescribed to women suffering from menopause but he started using it and he claims it significantly reduced his night sweats and hot flushes. I don't know if he was having mood swing issues. 

Now, I have been asking my oncologist if there was anything I could do about my biggest issue, hot flushes. His usual response was diet, exercise etc, so at my recent review that was filled with good news I asked about Sandrena Gel. Annoyingly, he knew about it but thought it would be good for me to try. I have just started so it is too early for me to know if the gel is going to help but might be worth you asking your oncologist about it.

I hope it helps.

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ardee

@John_H_T .... look into acupuncture. There is good academic research to support ... and the acupuncture points are known. The only bad news is that you have to repeat about every 3 weeks. Personally, I'd rather do that than estrogen supplements that can have clotting side effects. 

Chuck Maack has written a good paper on handling hot sweats .... but the file is too big to load. Here's an extract, and maybe Chuck will respond:

 

“I’ll provide the best recommendation first, then you can read other suggestions, but this recommendation by top Medical Oncologist Stephen Strum, a specialist specifically in the treatment of recurring as well as advanced, high grade prostate cancer, should be the one to follow: ““I am not a user of Megace in this setting since it is metabolized to DHEA and then to androstenedione and then to testosterone. When the PSA is in good control and the testosterone is low, I use Depo Provera intramuscular injection 400mg ONCE and that usually eliminates hot flashes forever.” Therefore, a 400mg Depo Provera intramuscular injection just once would be what I would have done were I experiencing hot flashes. HOWEVER, IMPORTANT TO NOTE: Depo Provera has also been known to cause gastrointestinal bleeding – and a low hct percentage can also be attributed to loss of blood. If you are experiencing fatigue and shortness of breath subsequent to Depo Provera, you may be experiencing a blood loss with this GI bleeding and don’t know it. Be sure your physician keeps an eye on red blood counts (RBC) as well as hgb and hct levels."

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Brian G

Great advice from ardee, Kevin and Feurmann. From my limited experience so far I think exercise physiologists maybe essential in helping to control the side effects of ADT. A Health Care Program through your GP will get you five free EP consultations a year.

 

I started an exercise program under an EP at Edith Cowan Uni in Perth when I had my first ADT injection in November, still on it now. After listening to a talk by the professor heading the program I was encouraged to exercise vigorously which I do at the gym and swimming, and I also walk regularly. I maintained this during seven weeks of radiation last year to treat a positive margin (with rising PSA) after having my prostate removed in 2018.

 

Apart from physical things like loosing body hair and complete loss of libido I have only had minor psychological issues so far. Sleeping reasonably well with just an occasional sleeping tablet and the odd 30 seconds or so of feeling anxious that while disconcerting, passes quickly. Controlling weight and limiting drinking go hand in hand with a strict exercise regime. I have also regularly attended prostate support group meetings where  I think the mental support from fellow sufferers and advice from guest speakers are invaluable. 

 

Exercise may not help everyone, but if you don't do it now, well worth a try and it is a very enjoyable thing to do.

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Patrick Turner

Hi Terry,

When I began ADT in 2010 after a failed RP because too much Pca was outside the capsule, I was quite ready to wave my sexuality capabilities goodbye. This happened, and was no big deal because I have not had much luck keeping any lady "on the porch"; they all wanted their freedom to travel and be full of ideas I could not understand. I have had a nice happy life without a wife since 1978, and never ever felt I needed psychiatric help, and nobody said I needed to see someone. I'm now 72, and ADT continues, and if Lu177 had not worked a bit last year I'd be in palliative care, preparing to un-live one day, by myself, which is fine afaiac. I have no idea why I am so resilient when confronting my Puff The Magic Prostate Grenade which is slowly exploding. But I am managing 200km on a bicycle each week, I am 77Kg, 1.85M tall, have BMI 22.5, waist < 95cm, resting heart rate 48bpm, and I cannot recall the last time I had uncontrollable mood swings, or got real angry with someone, even if they deserved it.

The complete loss of testosterone has done nothing much to change me. Since 2006, I began cycling again after a 12 year break. I was 20Kg overweight, and I soon found how satisfying it was to cycle 100km rather than do a whole pile of other things. I lost the weight I needed to lose, kept it off, and slowly got lighter, and changed diet to mainly vegetarian, and while I cycle around my town of Canberra, nobody over 65 ever overtakes me even though they have a "full bottle" of testosterone, so I prove that a man does not need it. Its nice to have it, and I'd be 4kph average faster on bike if I did, but testosterone is my enemy, it helps Pca which wants to kill me. It probably will. But meanwhile life goes on, no mood swings, I am fairly happy, and I can't change what DNA was given to me by Nature. 

I just don't understand why men focus so much on having no testosterone, and the extermination of part of their make up as a man. Women get it worse with their menopause, or pause from men, where many become quite allergic to anything male. 

But so far, nobody thinks I am a grumpy old man. Afaik, most drugs for mood swings cause mental dullness, and many older ppl have a varying amount of being a "difficult person". I grew up with a father who negated much of the good he did with his fits of bad temper. My mother was fair, firm, but not bad tempered, and I seem to have her genes. If anyone has got mental problems they need to see how it affects others, but of course part of the problem is that they can't see the problem. Many alcoholics deny they have a problem with alcohol. I hope you can work to control whatever seems to be maybe causing mood bothers. My mother went to a psychiatrist to work on herself because her youth was much affected by a father who was an alcoholic, and dangerous, and to deal with my father who also was dangerous when he lost his temper. Nobody should fear you, or be made angry by you, and others should love you. I found it was very easy to score only a few crumbs of love which fell off Life's Table Of Plenty, but I managed to get by very well being unloved and having no family of my own, and not get upset about it. I could never force anyone to have a relationship with me. They had to choose. Somehow, maybe whatever I needed to resolve in my personal life, I managed to resolve it well, so others didn't suffer as a result.

Many of us end up with PTSD from having lived to get old. But I sleep OK despite having to wake up 4 times a night to pee.

I can't help being 72, and there seems to be much goodwill in the World, and I never am very upset by anything. Its maybe good luck that I am like that. I hope you work through what is bothering you.

Patrick Turner. 

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Brian G

Terry, Patrick is another (inspiring) example of the possible benefits of strenuous exercise. 

 

Cheers

Brian G

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Terry

Thank you all for your help.  It is really appreciated and has allowed me to see the options available to me.  I have recommenced undertaking mindfulness and this has helped.  Plan to increase my exercise levels now and see if that helps.  Patrick's story has helped in this aspect.

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DaveK1200

Hi Terry,

 

Perhaps you could ask your doctors if they think “Intermittent ADT” might be suitable for you, and if it might help to reduce the side effects.

 

Dave

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timbaker

Hi Terry,

A bit late to this but I too had an awful time on Zoladex, endured it for three years, with two six month breaks on cosudex alone because it affected me so badly-mood swings, short temper, ultimately deep depression and suicidal thoughts - nearly cost me my marriage, my career, my mental health. Eventually, oncologist agreed to move me on to Xtandi, (enzalutamide) and I am much happier on that, pretty well back to my old self. Exercise, diet, and seeing a psychologist have all helped too. Xtandi has not been quite as effective as keeping my PSA in check with a slow but steady rise, though PSMA PET scans remain good. I decided a while ago to opt for quality of life over quantity though ideally I'd like both!  Ultimately I will have to make a decision on other treatments if PSA keeps rising but for now I'm well and happy and in a good place. Wishing you well.  

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Terry

Thanks timbaker.  Just knowing that others are having, have had problems helps as you realise that you are not alone.  Must admit that I am looking at quantity as I have two young grandsons (among 7 granddaughters) that I would like to see grow up a bit.  Also since posting this I am feeling much better and controlling my moods a lot better - mindfulness has really helped.  Am off to see a clinical psychologist in a couple of weeks who has experience in treating men like us.  All the best and again thanks heaps.

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