Typical QoL after initial treatment

User

Posted 06 Nov 2023 at 11:30

Hi all

I wanted to ask others here that have been treated for aPC during the hormone sensitive phase how they feel in general, what issues are you finding long term?

For myself I've had the six Docataxel chemo sessions in the first half of this year, and although I started on Zoladex implants for the LHRH (ADT) I opted for subcapsular orchidectomy to reduce my testosterone permanently, and finally I had 6x6y radiotherapy. I also have been on blood pressure medication for 3+ years.

Now that I'm coming up to 6 weeks beyond my main treatment I'm finding my level of strength and muscle aching is rather high, and I'm guessing most of that is down to the lack of testosterone. Any time getting up from a chair or getting out of a car, I have to be slow as all the muscles involved are sore and if I try to be too fast I just collapse as the muscle won't take it.

Another thing that has occurred in the last 4 weeks or so is I wake up at night and my hands are very stiff and I get a lot of pain if I try to move my fingers into a clenched fist, I have to close them slowly while they feel all swollen. Both of my arms also struggle to extend out (like taking a t-shirt off) as at some point the muscle gets caught near the shoulder and can cause quite a bit of pain.

I will be seeing my oncologist in a few weeks time after my first post RT PSA blood test and will mention all of this, but wondered if others have anything similar. I'm fairly sure most of this is to do with the lack of testosterone rather than long lasting chemo/RT effects, as that's the only thing my body has to deal with everyday at this point.

Rob

User

Posted 06 Nov 2023 at 16:02

Hi Rob,

I feel for you, it might be worth reading this post if you have not already done so.

https://community.prostatecanceruk.org/posts/t12409-Zoladex-side-effects

I’ve been on Prostap3 for 16 months and suffer from joint stiffness…getting up of a chair sometimes is difficult but low toilet seats are the worst. Strange thing is when I went to my physio he said I have very good strength, so I just don’t know. I’ll keep going with my exercise regime in the hope that it doesn’t get any worse.

all the best,

Derek

User

Posted 06 Nov 2023 at 16:40

Thanks for that Derek, I guess my post would have been better placed in that area.

I notice some mentioning tendon shortening and that is definitely how I would describe some of my symptoms. Across the knuckles of my left hand I can get an alarming feeling of my skin/tendon not being loose enough to allow me to bend my wrist fully, it suddenly "pulls" and feels like next time it might snap. Every day my feet swell up from sitting at my desk (as I still work at home) which is most likely related to my blood pressure tablets, but it is much worse since my PC treatment started.

I saw your reference to side effects of Zoladex compared to just not having testosterone, and I can say after 7 months on Zoladex and then 4 months of having hollow marbles, my issues have gotten worse overall. It is always hard to separate all the treatments since they overlap, and one doctor said it takes up to a year for Zoladex to go from your system fully. My unscientific take on it is I'm just suffering from a year of no testosterone, and since for aPC we don't usually stop that treatment I don't see that getting any better.

I feel like I should report all of this to my GP but I don't want to moan about side effects that are expected, but also I need the NHS to know about my issues. I called the DWP today about PIP as I feel like I'm getting to the point that I could qualify for government help (and I won't feel bad about it since I will loose all my state pension I fully paid up for since I will die well before pension age). I feel I should probably suffer in silence since I can't see what the GP can do to help.

I'm very interested to find out my post-treatment PSA levels on the 20th (new baseline). I read somewhere that if you jump up over 4 in PSA level between checkups that's pretty much the signal the cancer has become castration resistant. Since I started at 990 PSA on diagnosis and had several bones affected, I think I was fairly heavily burdened from the start.

User

Posted 07 Nov 2023 at 07:17

I feel like I should tell my doctor about everything, but I don't want to complain about expected side effects, and I also need the NHS to be aware of my problems.

rainbow obby

User

Posted 07 Nov 2023 at 07:57

Hi,

By all means tell the GP all your symptoms. It's important that "they" know all the sides effects of these drugs and the doctor may pick up something that is NOT related to the drugs. You may have some cronic thing that can at lease be controlled if not cured. I have three or four of these. The rest I attribute to the drug: eg strange aches and pains and bad tinnitus. I keep repeating: the tough side effect for me is fatigue and a few psycho effects such as depression. It's bad enough dealing with the knowledge that you have cancer without the **** drug topping up your sadness, fear and anger. Having some strange pain up your arm, I find irritating, but secondary to the fatigue. When I started on Zoladex I accepted their offer of a few sessions with a councillor. She gave me some advice: be easy on yourself, it is not your fault, all my "patients" feel like you. I would add another: track your mood through the day, and tell your family/partner etc when that is. That way they too can also blame the drug and not you for being grumpy.

Cheers,

Otto

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