Dad seems to be deteriorating

Hi Duckling

Sorry to hear about your dad. My husband had a very high psa intially and it had also spread. The HT injections certainly do affect the moods and mine has had counselling and also on some antidepressants too. Other symptoms are similar to your dad's too but he has several other medical problems.

Your dad's psa is very low, so I was just wondering if has he had a urine test? If he has a UTI, this can cause some quite debilitating symptoms. 

Gina

Hi Gina

Thanks for replying an Di am sorry to hear about your husband I hope he is doing well. He hasn't had a urine test, that is a good suggestion I will get a sample and get it sent to GP. 

Sorry to hear your Dad is so poorly. When you say his ‘colour is awful’ can you expand - ie what colour? Bluish? Very pale? Yellowish? Etc. also, have you checked his temperature, pulse, blood pressure and counted how many breaths he takes in a minute? Depending on these, I would consider contacting nhs111 ( you can do this on line as well as by phone). 

I hope he feels better soon.

Hi

I’m no doctor, but I hope things improve, he may have jaundice, but bloods will tell you more. PSA under 1 so the meds are working, they do take a toll on the body, as long as he manages to eat that’s a plus. Over six and a half years and I still get breathless, fatigued plus a few other things, I stay positive. I would love to sleep ( restless leg syndrome ) but sometimes my body says take a nap. Like worried wife has said, if your truly worried 111, that’s what their there for.

Stay safe

Joe

Hi Worriedwife

Is colour would be yellow and at times worse than others. His temperature is okay, I am getting someone to come to th ehousr today to get his blood pressure taken. He is in bed again today and very down because of the fatigue. 

Hi Joe

Thank you for taking the time to reply. His appetite is really poor and the fatigue seems to be over powering. On Tuesday when he sees the Consultant I am going to see if there is an alternative to Enzalutamide as he said today he can't cope with the fatigue at all and it seems to be getting worse. Your story is very positve and it is very reassuring to hear it so thank you for sharing.

I hope the blood result come through ok tomorrow and give you some reassurance. I’m so sorry that your dad is so very tired. Hopefully you will be able to talk to a doctor about how poorly your dad is.  Let us know how it goes!

Just an update following my dad's appointment today. His bloods are all normal and PSA is still below 1 however his symptoms are concerning. The Consultant has taken him off the Enzalutamide with immediate effect as he said that my dad is too unwell to continue with it and they must rule it out as the cause. He said it may be causing the extreme fatigue etc. And the only way to do check is to take him off it. He is also going to refer for an urgent CT scan and bone scan as there is a small possibility that the cancer has grown and the psa isn't showing this, again unlikely but it can happen and needs to be checked out. Chest sounds clear however he was given a chest Xray and a course of antibiotics.Dad seems reassured that he may start feeling better however I am concerned that the cancer has spread. Hopefully the scans are quick and show no further growth or additional cancer. We will hopefully see an improvement in the next few days now he is stopping Enzalutamide. 

Oh, this sounds more positive! I’m pleased your dads condition was taken seriously and really hope that, without enzalutamide, he will quickly begin to feel a lot better. I hope your fears about cancer spread prove to be unfounded. Let us know and I’m sure everyone is hoping for the very best outcomes!

That is good news and I take it, there was no uti? There are other hormone therapies. My husband was initially on Degaralix but the pain from the injection site every month was too much for him, especially as he has a large scar from a bowel resection a couple of years ago. He is now on Prostap which is every three months and he seems to be tolerating that much better. As I said before, his cancer has also spread so it is obviously a suitable one for pc that has metastasised. His mood swings are the worst side effect but I think that is a given with this sort of treatment. For men, who have lived with testosterone all their lives to suddenly find themselves living without it, must have a profound effect on their feelings. As women, we know how difficult it can be with our own hormone changes, especially through the menopause.

The good news is that his PSA is low, so with any luck it is just a reaction to the drug.

Fingers crossed for the next few days.

Gina