Hello,
My dad is 70 and has been suffering with advanced prostate cancer for 8 years.
His treatment journey has been:
- First 3 years Zoladex injection hormone therapy only (this has continued throughout the last 8 years)
- Next 4 years Enzalutamide tablets
- At the beginning of this year, he had a course of 6 rounds of chemotherapy (Docetaxel) but stopped after 6 treatments as the side effect of intense fatigue was too intense
At each stage, his treatment has been changed due to an increase in PSA level.
His main side effect of the cancer and treatment has always been fatigue which has increased over the years.
After the Docetaxel, his consultant gave him time to recover, but that was in January of this year, so by the time he’d had a couple of months recovery, we went into lockdown across the country.
His consultant then advised he would speak to him again in four months. At the time this didn’t seem unusual, but thinking back, I feel that we should’ve questioned it as he would usually speak to him once a month.
Over the four months, dad continued to take a low does of steroids (Docetaxel). His fatigue worsened, so his consultant slightly increased his dose of this, but it seemed to make little difference.
When he had his official consultant with the consultant a few weeks ago, his blood tests showed that his PSA had gone from being 12 to over 250. His consultant advised that he wouldn’t be able to give him anymore treatment as he felt that my dad couldn’t cope with it.
Since then, he has been referred to a hospice and the doctor at the hospice has assessed him. He’s also had a district nurse come out to the house to assess if there was anything that could be done to help him in the house to make his life easier.
His main issue is fatigue. He cannot walk for more than a few steps without needing to lean on a work surface or cupboard for relief. He can slowly change his clothes but needs to take large breaks in between each piece of clothing. Mum now helps him wash.
He finds it difficult to sleep at night so generally goes to bed at 2am and wakes at 7:30am, but he doesn’t have a full nights sleep and often gets up in the night and cannot rest straight away so stands for maybe an hour to calm himself.
He suffers with aching in his chest and an elevated heart rate when doing any activity. He also suffers with feeling of anxiety (due to the concerns about where he is in his cancer journey).
His GP suggested doing a spirometry test to see if there was any other underlying condition, for example COPD, but due to Covid, we are unable to get this test done either on the NHS or privately.
Dad has asked for an inhaler as he was given one at the start of the year when he had a chest infection, and it helped over that period, so he wants to try one now to see if this will help him. But his GP and doctor at the hospice are reluctant to try him with one.
He hasn’t been able to do anything but sit in the house or drive mum two and from the shops for the past 6 months. He doesn’t want to go into any shops due to Covid.
His legs have swelled which may be from sitting for long periods of time, or may be partly due to the steroids. He now has an elevated foot rest that he is using to try to reduce some of the swelling.
My dad just wants to have a little bit more energy, not feel these aches in his chest, and feel a bit more confident as he now doesn’t feel confident to drive. In an ideal world, I’d want to get him tao the point where he can walk a little further - even just a few more steps so I could take him out for a coffee and a change of scenery. I bought him a stick last year and when he was walking outside, he felt that this was helpful.
His doctor at the Hospice decided to increase his dosage of steroid for a week, then reduce slightly, then reduce a bit more. Dad didn’t feel like the steroids were making a difference and told the doctors so she advised that he stopped taking them altogether. He felt awful straight away and felt he could do even less than before.
We’ve spoke to his GP, the hospice doctor and his consultant, but none have been able to provide help to elevate the fatigue.
Has anyone had a similar experience? Is there anything that you did / were prescribed that helped? Is there any general advice you could give?
If you’ve read this all, then I really appreciate it - I didn’t mean to make this post so long, but I felt I needed to explain the whole story!!