Symptoms after radiotherapy and chemotherapy

Hi Springhare,

sorry to hear about your husband's symptoms. I'm afraid I can't help much as dizziness is one of the few symptoms my wife hasn't had yet. I was interested though to hear about the muscle wastage. How long has he been taking the steroids and do you know what sort of dose? My wife tried to come off them but couldn't because the headaches returned immediately. Just recently she has started to struggle to make her daily walk of about half a mile. Muscle wastage would explain that.

I really hope things improve for him soon.

Best wishes

Chris

Hi, he has been on Dexametazone for quite sometime. They saw swelling on MRI before his diagnosis in May and he was taking 15mg that time, then went down to 8mg, during radiotherapy 4mg, then now 2 mg. 
we were advised to reduce to 1 from next week then stop taking. 

He still has morning headaches which I think from swelling so I left a voice message to his consultant and waiting for the advice.

His consultant told us steroid eats muscles and bones up unfortunately. 

Ok, thanks Yes similar story here. We got down to 2mg but just couldn't get any lower. We'd heard about the bone problems so my wife's been taking vitamin D every day in the hope that will help a bit.

Hi Springhare

sorry to hear that your husband is experiencing these symptoms. This really is the disease that just keeps giving, It's too cruel.

My husband didn't experience dizziness (or if he did, he never told any of us which wouldn't surprise me). Our CNS did say to make sure he drank plenty of fluids as folk with brain tumours need more hydration than you or I would. If the symptoms persist, it might be worth getting your gp to check his blood pressure just to be safe.

The altered vision is something my husband commented on in the early days. This has been put down to pressure on the neural pathway through the brain to the optic nerve but was never fully investigated. He said it was like looking at the world through wet clingfilm. Every now and then he says he'll need to go and get his eyes tested and refuses to listen when we try to explain that it's his brain not his eyes that are a fault. 

The fatigue from the radiotherapy stayed with him for about a month after the treatment finished then his energy levels returned pretty much to normal. 

We're now over 2 years down the line and I am noticing that he seems to tire a little more quickly than before and is slower to get up and get going in the mornings.

Hope this has helped a little. I'm sure others in the group will be along to share their experiences shortly. Please remember that the MacMillan helpline is also there for support. The number is below.

For now, I'm sending you a huge virtual hug. Hang in there. 

love n hugs

Wee Me xx

Hi Springhare, sorry to hear what you are going through.

I’ve got a GB4 diagnosed in August. I had a 6 week course of radio therapy. They did warn me about cumulative effects. Initially I experienced nothing but then at about week 4 did suddenly have the headaches (standardish) / then more location specific buzzing ones that were a bit alarming and then the hard core next level ones which felt like someone had just dropped a brick in the middle of my head. These often were days where I was pretty zombie like for long periods. In the end I juggled my dexameth dose up to stop the crazy ones and then steadily reduced back down from there. I’m currently on 3mg a day. Ive not experienced dizziness specifically

Radio therapy finished 15 days ago but I’m still experiencing the ongoing effects. This period had been described as a ‘four week break’ but in reality, having spoken to the radiographer last week, after feeling more spangled that ever before, it transpires that they still technically class this period as treatment; ‘yes the radiation is still working around your system so no you won’t feel any improvement, in fact probably worse’. And in actual fact it will keep buzzing for 6-8 weeks. So I’m still experiencing brain fug, the roller coast ride of steroids and crashing periods of energy that require sleep and generally not going anywhere or doing too much. Hopefully that when the dex is down to 2mg per day things will level out again.

I have exactly the vision issue Wee mee describes and for the same reason (tumour is over the optic nerve) and did from day one (which as a graphic designer was challenging).  I struggle with strange things like spotting jars in cupboards, watching TV, or really looking at emails / messaging friends on computers (stopped really trying on a mobile).

I did ask my Oncologist about a referral to ophthalmology in case there was anything they could do like add blue lens filters, or some such. He said he could but we would need to wait 6-8 weeks until all after effects of the radio therapy had settled down. But for the above reasons you mention, it is more of a visual processing rather than purely an eye sight issue, so not sure what may be achieved.

In terms of muscle wasting I find I get back and neck ache and neck ache at random in localised places for a 4-5 days that then pass.Its the gift that keeps on giving!

It was the community palliative care doctor who prescribed 0.5mg dexameth (my main ones were 2mg tablets), which gave me much more ‘unofficial’ freedom to tweak the dose to the minimum I felt I needed to manage swelling and side effects, but not too much that the effects of the dexameth were the problem. The Oncologist was adamant the most important thing is a good nights sleep. So not having too much dex that it keeps me awake, I was prescribed zopiclone to help with sleep which worked like a dream, but your body does get used to them pretty quickly

Hi, Wee Me,

Thank you for the reply. 
I spoke to a nurse yesterday and she told me the same about drinking plenty of water, but he has a kind of mental block as he started experiencing sensitive bladder  issue since his treatment… Plus he is very stubborn which doesn’t help. I don’t know what to do.

My father in law had the vision issue which your husband has. He described it waterfall on the wallpaper.  

He is tired but I think main issue is at the moment is dizziness which stops him doing things for example going for a walk. He spends most of the time in bed and I wonder it makes things worse and makes him depressed. 
I ask him if he wants to step outside with me anyway but he doesn’t… He was a strong man so I guess it will take awhile for him to accept his current weakness.

I got palliative care team onboard (nurse, social services and social worker) and trying to get help from them as I have been struggling myself to get him back on track. He totally depend on me and doesn’t do anything  at all himself. I am suffering from menopause and anxiety so it is not great combination. I have started thinking to leave him to stop myself going insane… sorry I have started talking rubbish… 

Anyway thank you for your advice.