Tuesday, June 19, 2012

Side Effects Sutent Round 1

This post may be slightly boring for most of you...
but a lot of RCC patients read it,
so I for them,
and for our records,
and for anyone curious about what the past 5 weeks were like...

Here you go.

First-we were only able to get 3 weeks on,
instead of 4.

(That is now rectified and we received his next 4 weeks yesterday.)

Week one his tummy just felt yucky.
Pretty much constantly,
and it was noisy.
We would be laying down and watching
TV and you could hear it just doing it's thing.

Each evening he would get a heat rash that 
would spread from his chest to his face.
It was a bit of a fever,
but not that bothersome,
and just went away on it's own.

And he got/ and still gets,
cold and hot very easily.
His body just can't be a comfortable temperature for long.
It's picky.
He's kind of a diva.

Week 2 the diarrhea began.
And the nausea that he really has had since IL-2 
worsened.
Even with drugs he would have morning where he would
throw up,
but still did ok.
His taste buds didn't lose complete sense of
taste, like some on Sutent experience,
but things just tasted a little different.
And a little off.
 
The fatigue really started to come into play here too.
That's been really hard on him because it's something
that not many people understand.
It's not like he can just take a nap and feel
better.  He's not just tired, His body is just completely
exhausted.
He doesn't sleep well,
and if he does-it still doesn't feel like he's slept at all.
Fatigue is something quite different,
and I think it's pretty bothersome to him.

Mostly the stomach issues happened in the am
and he just felt yucky throughout the day.

Week 3 was much of the same,
maybe a little worse in some areas,
but much of the same.
With a sore throat added in.

And, it's started.
The white hair transformation is coming along nicely.
His beard is completely white now,
and he has some lovely white roots growing in.
I imagine by the end of this cycle he will look like Santa.
It's crazy,
considering he is so dark.

I find him still quite handsome.

Pretty much in those 3 weeks he would feel
okay one day, and then one day wake up 
and feel awful.
It really varied day by day.
Each morning I hold my breath and just
wait to see how he feels.
And silently pray it will be a good day.
The worst part is that even the good days
are pretty rough.

The last few days of week 3 
were the very worst,
and the sickest I've seen him.
He was VERY hot,
Very nauseous,  and every other thing
he was going through was just worse.

He couldn't really stand up without throwing up.
It was tough.

It was almost a blessing that we didn't have to 
have another full week because I am 100% sure 
that his body wouldn't have handled it well.

Now he's had his 2 weeks off
and had done much better.
The nausea is still around a bit,
but his appetite has been much better
and his fevers have been gone.
He still isn't sleeping great and the fatigue,
while not as bad,
still gets him now and again.

He said the other night in the middle of the night
he got a drink of water and thought it tasted funny...
then he realized it's because it was normal.

Just in time to start again.:)

He started his dose last night
and we are praying for a little less stomach issues this go around.

They say each dose is different-
so we are keeping our fingers crossed for the best scenario possible.

This past week has been 
heaven to have my husband back.
He's been so much more himself,
that I dread the next 28 days.

BUT!
I'm living for the 2 weeks that follow.

 Thanks for checking in.
It's always appreciated.

3 comments:

Mortons Love said...

ooh boy! That is an armful of side effects!

Bless him, bless you, bless your darling girls. Bless Santa too.

Watkins said...

You are always in our prayers! Bless all of you!

Chanelle said...

It sounds like the really bad flu that never goes away. I didn't know about the white hair! As always, I'm amazed at his strength and good attitude, he's kind of a superhero. We love you all.