My Dad has been 'cured' of cancer; so why is he getting iller & iller

[KatyMac]

I'm not sure iller is a word

But in March he had the all clear from Small cell lung cancer; he had brain radiotherapy as a precaution just after Christmas

Now before he was a fit 'healthy' bloke he is now an old tired man; he can barely stay awake for more than a couple of hours, he can't do anything & he struggles with thinking

What on earth is going on?

[CMOTDibbler]

Do you think he's got more tired in the last month?

Whole brain RT does have side effects, and the overall treatment is going to have really taken it out of him, so needing a lot of sleep is possibly to be expected at this stage after chemo/RT, as are problems thinking. Its been, what, 8 weeks since he finished treatment?


If you are concerned, then contacting his oncology nurse for a chat would be good.

[KatyMac]

No he finished the last week in December - March was when the whole body scan was. His last Chemo was in October/early November I think

We rang the hospital last weekend but they couldn't help as they were emergency care only so I finally got his agreement to phone again today

He was put on steroids but had a major reaction in his ankles swelling and the all the blood vessels burst, so they took him off

He has aged over 20 years in the last few months

[KatyMac]

We had a talk & they are bringing his appointment forward to 1st May from mid june

I guess I am just scared as he is getting visibly worse

[Coldcabbagestew]

Katy - you can get delayed fatigue following whole brain radiotherapy - google 'somnolence syndrome'

Good idea to get him checked out though .

[KatyMac]

That is it exactly

Thank you so much - at least it has a name & other people have it

[KatyMac]

I passed the information on to him & he is so relieved

He was convinced he was dying & they hadn't told him

He will be discussing with them the fact that knowing this could happen & the time scales involved would have help both him & the family. Saying "you can get very tired after radiotherapy" isn't the same as saying "Sometimes after you start to get better you may get hit by an awful tiredness but don't worry it's normal and it has a name"

"It has a name" is somehow very reassuring

[lessthanBeau]

my mum has sclc too and underwent full brain radiation, it took her almost a year to get over it, she's much better now but it certainly has aged her she's no longer confident to walk to the shops alone, she forgets things much more now , she still on 3 monthly scans, and so far its being kept under control, she's was diagnosed just over 2 years ago.
your df will get better, the radiation has longer side effects than the chemo.
xxxx

[KatyMac]

He's not booked to have a scan again at all (afaik)

This is what he was worried about, that his quaility of life would be damaged so much - this time last year he was building boats & cycling all over the place - he can't walk to the end of the garden & his mental accuity has dropped dramatically

I'm glad your mum is OK 2 years on

[BumblingBoris]

My DF had aggressive radiotherapy a year ago on his head and neck hes 70. He didn't start felling ill until AFTER it had finished. He was wiped out And ended up in hospital for a few days. Nobody tells you how physically exhausted rt makes you.
a year on and hes back to his old self,
It was awful to see him suffering and it took a good 6-9 months to see a marked improvement.
for you

[KatyMac]

thanks for telling me BumblingBoris - glad you dad is a bit better

[MrsJuice]

Also, has he had bloods to check thyroid status?
I was overactive, had it removed, and was very inadequately medicated. I have been sleeping all the time and feeling horrendous.
They have finally accepted that my meds are wrong, but it has been horrendous!

[KatyMac]

The consultant has confirmed the Somnolance thing so I think I'll leave it quite for the moment

Thank you for thinking about him tho'