is Radiotherapy/Chemo 'Fog' real

Hi

The answer is yes, but what your husband seems to be experiencing in somewhat extreme. 

I remember saying to my consultant post treatment that I had difficulty remembering things and they really questioned me as to the extent.  In my case they were not concerned.

Most of us suffer some memory side effects from the RT treatment even though they do their best to avoid damage to the brain (it is rather close to most tumours sites in terms of RT beams etc).

I do believe that sometimes the trauma of the treatment gives us a form of PTSD and we "shut down" to protect ourselves.  I can barely remember the bad parts of the treatment and recovery, but the better aspects do stick in my brain.

There is also memory loss caused by underactive thyroid.  Sometimes our thyroids are hit by the RT - mine was and they are still adjusting the thyroxine dose, but as they do my memory (and other symptoms) is improving.

Speak to his clinical team and seek their advice.

Hi. I agree with Peter , it does seem extreme. I would always run things like this past his oncologist. It may not be fog. 

Stressful time for us, initial diagnosis and unpleasant chemoradiation treatment gives us much to process and deal with , PTSD may also kick in, chemo brain can appear at any stage, your CNS should be able to help you get to the root  cause of any issues, whether it is chemo brain or something else.

Hi as others have said mention to his oncologist. Plus I would keep a diary of when how  often and what he can’t remember also how long  taking to come round. 

Hugs Hazel x

Hi DW.

Hazel's spot on about keeping a diary of episodes.

Over the last couple of months my H has had a series of seizures, pretty frightening at the time to see.

I've kept a record of every single one.  Times, dates, duration, whom I've spoken to and actions taken.

I've mentioned this to every professional we've encountered since plus three visits to A and E.

We're seeing his oncologist this coming Tuesday and I'll give her said record.  I also wrote down what I reckon the possible problem(S) might be.  His CNS frowned and nodded to herself when reading it I noticed.

Try not to be fobbed off, and be pushy,  till you get answers.

Good luck and all the best.

Gill xx 

Hi sending positive thoughts for Tuesdays appointment. Let us know what happens when you've a minute Gill. Sadly others will ,follow in our footsteps and knowledge is power for others.

yes we need to remain pro active and pushy if need be. 

hugs 

Hazel 

Hi Hazel.

Yes, I'll let you know if we make any progress after Tuesday.

Like you say, being proactive can pay dividends.  It's so worrying, the not knowing what's wrong, and I'll keep making a nuisance of myself till we do.

Thanks love - have a good night.

Gill xx 

This is so interesting Peter. I thought I was losing it but feel reassured. I don’t have memory loss per se just can’t remember some names. Daft things really which concerned me. Worse when I’m tired 

DesR said:

I thought I was losing it but feel reassured. I don’t have memory loss per se just can’t remember some names. Daft things really which concerned me. Worse when I’m tired 

Losing words? Tell me!

I asked my oncologist about that and he said that RT does hit the base of the brain which might be responsible for some memory problems but it's usually transient. On the other hand he did remind me that I was 73 ! 

I know Hazel has taken part in some post RT cognitive tests and is a sharp as a tack. I'm a bit blunt.

Morning Hazel.

We saw a different oncologist yesterday and he allayed some of our worst fears.  For the first time, in all these months, the words "curative and clear margins" were uttered. 

I know H's treatment plan has been different to many on the boards, but a huge wave of relief washed over us as deep down we'd been expecting the fat lady to start tuning up!  Phew.

Now regarding the seizures, I'd been right inasmuch a med our GP had prescribed had risen H's cortisol even higher and was absorbing magnesium and electrolytes, ergo sending his system out of whack and contributing to the seizures.  The onc said I'd done the right thing to taper him off the tablets.  On my notes I'd also mentioned thyroid and pituitary issues and he told us these will be investigated when we see the endocrine surgeon.

All in all persistence, and doing prior research, has paid off.

I managed to sleep better last night... wonder what helped that?!

Gill xx