Hi there
my dad is currently on his third cycle of chemo. First cycle was cistplatin and vinorelbine and second and third cycle was switched to carboplatin and pemetrexed. It seems to be since he had the steroids for the second cycle it’s triggered an agitation and restlessness that has been persistent and intolerable. So much so that we ended up in A&E 2 days ago having a CT scan of my dad’s head as they were concerned of spread to the brain due to how he is being. Luckily it hasn’t spread. He has been prescribed 1mg lorazepam and the last 2 days has been either sedated or agitated. I think he is utterly exhausted and I’m not sure he can tolerate much more. It really feels like the treatment is not tolerable for him and I am scared as he has 1 cycle left and then the plan was radiotherapy for 4 weeks. I wanted to reach out to see if anyone has been through similar or felt treatment wasn’t doable? I think my dad may be possibly acutely sensitive to steroids as his general health is below bar and his mental resilience is quite low
Hi Deli
So very sorry that your Dad is struggling with the chemo..
Carboplatin is the 'kinder sister' of Cistplatin, so it may well be the introduction of the steroids and/or the Pemetrexed that is causing the problems.
He needs to make his cancer team aware of what is going on. As he only has one more cycle of chemo, they may offer him the chance to skip the final cycle of chemo ahead of the radiotherapy. The chemo is given ahead of the radiotherapy in order to shrink the tumor so that the radiotherapy has a smaller target area. This makes the radiotherapy more effective and also kinder.
Whatever the cause, his cancer team must be told asap.
I wish you and your Dad the best possible outcomes.
Kegsy x
Hi Kegsy
thank you for your reply. My dad has a CT headscan Tuesday as we ended up in a&e due to the agitation and restlessness. I’ve been able to do some research and it seems that my dad maybe suffering from hypersensitivity to the steroids he has been given when he had his chemo. The head scan was clear thank god. Apparently the steroids can cause a mixed manic episode. My dad seemed to have some kind of delirium. He is really struggling he just keeps saying he cannot take much more. He is due a review with his oncologist on 27th March, the day before his next chemo. His care team have been informed via the inpatient Macmillian nurses after our trip to a&e. I just feel so helpless my dad is normally a strong man but he just doesn’t seem to have the mental fortitude to get through this and I don’t know what to do x
Hi Sweets_69 thank you for reaching out. My dad had a large dose of dexamethasone when he had his chemo on the 7th March IV and then he was given steroids form 3 days after 2mg dexamethasone twice a day. My dad is suffering with the same as you. Severely agitated, very low, suicidal ideations and so unsettled it’s awful. How did you get through it during treatment? I need to make sure I am advocating the best I can for my dad xx
Hi Deli
Forgot to add that most steroids given with chemo have no direct action on the cancer. They are given to aid wellbeing e.g appetite etc.
During my first round of chemo where I was given steroids and anti sickness intravenously on day one, then given tablets to take at home on days 4 & 5. I blew up like a balloon with fluid retention and I spent the weekend peeing for England. After that I didn't take the tablets. If I thought it was a battle I could have won, I would have requested the intravenous steroids be stopped.
Now this was my decision that my cancer team were not aware of, so I am NOT advocating that you suggest this to your Dad. However you do need to raise this direct with his cancer team before the next cycle of chemo.
Good luck.
Kegsy x
Hi , I made sure the oncologist knew about the issue so they adjusted the steroids and gave me the minimum possible . I feel myself going if I’ve had too many of them if that makes sense , With regards to the chemo after my first cycle I was wanting to stop but my husband was saying short term loss for long term gain . So I got through it I got toxicity , sepsis . Pancreatitis had to have a blood transfusion . All within the 4 cycles. Ild do it all again if I had to . See if your dad can speak to the cns nurse .
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