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 
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
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.

I'm living for the 2 weeks that follow.

 Thanks for checking in.
It's always appreciated.

Monday, June 11, 2012

Sutent cycle 1 ends.

I keep getting e-mails requesting an update on
how Travis is doing,
and then I realize I should probably blog...

but never know what to say.

In my last post Travis wasn't doing so hot.
It was a very hard few days.
And he should have had one more week on Sutent
during that time.

There was a bit of confusion when we got
our first round of pills.
The dosing is 4 weeks on-2 weeks off.
We were given 3 full weeks of pills,
and they were working on financial aide
and figuring out how to get the meds to us from there.

somehow, that didn't happen.

We've been working with Huntsman and
the Cancer Center in Logan to get the pills,
and still aren't sure if they will be here by Friday-
when he should start again.

So he had 3 weeks on 
and has had the past week and a half off.

It isn't great that he wasn't able to get 4 weeks on,
but with that being said,
I'm not sure if his body could have taken another week on.

It was incredibly,
hard on Travis.
(And all of us-really.)

So I will keep you all posted when we figure out meds,
but if all goes as planned he will start again
on Friday.

From what we know,
with each new cycle,
the side effects vary.

Sometimes it's the nausea,
sometimes it's diarrhea. 
Or both.
Sometimes it's hand and foot,
or mouth sores.
And they worsen as the weeks go on.

We are hoping that with this cycle
the stomach pains and nausea and 
all of the awful side effects don't come
back in such full force.
Because-if they do, 
something will have to change.

With his 2 weeks off he is feeling ok.
Still not great,
but ok.
Still fevering and feels a little off,
but much improved from last weekend.

The hardest part of this for us,
besides the obvious-feeling terrible all of the time,
is not really ever knowing what lies ahead.

We quite literally can't plan anything even a day before.
We just never know what the next day will bring.
We can't plan early mornings.
Or late evenings.

It's tough.
 But enough complaining!
We still look around in awe each night of how blessed we are.
We have a lovely home.
Beautiful, seriously beautiful kids.
Great family.
Fabulous neighbors.
And a lot of love.
Loads of it.
So we can manage.

I do feel like I need to add one thing here.
Travis has been driving a big old truck for the
past 4 years.
Now that he isn't able to do any heavy lifting,
the truck became pretty much a waste of gas money.

We put it up for sale and it sold in 2 days!

Today we went and bought a pretty little car that is
MUCH better on gas mileage for us.
And we love it.

I worry that some people will see us driving it
and think we are awful people because of the lovely
fundraiser held in our behalf.

I know, 
that everyone gave from their heart.
I know,
that I don't have to explain our actions to anyone.
And I probably wont explain our purchases
or what we do financially here again.
But I wanted to make sure that people know
that we are Eternally grateful for all that we have been given.
I still have no words.

Someone knew we were looking for a small
car, and very kindly, and generously donated a little extra
money for that purpose.

With their kindness,
and selling the truck,
we have the cutest little car
and will save a Large amount of money on gas.

We have amazing people in our lives.
  And we have no doubt that we don't deserve 
all the love we have.

 I've said my peace.

I'm going to snuggle my husband
because we have 4 more days till hell month
begins again.


Love to all.

Friday, June 1, 2012

Sutent: Week 3

Tonight I miss IL-2.
And that is saying something!

Sutent is hard.

From what we know over the 4 weeks of
this drug side effects get worse and worse.

And then you get 2 weeks off before beginning another dose.

And when you start another round...
they get worse and worse again.

And so on.

I've had mixed feelings about how to answer the question
"How is Trav doing?'

Because it all depends on the day.
I hold my breath each morning and wait to see how he feels.

Some days he feels pretty terrible.
(Mostly stomach issues, heat rash, and fatigue).

And some days he does pretty well.
I wouldn't say he ever feels great,
but for the past few days he's done great
and we thought we had a good thing going.

Till today.
Today has been extremely rough.

Trav woke up feeling sick,
and it's gotten progressively worse as the days gone one.

He is extremely nauseas and hasn't been able to eat,
or hold anything down.
He has some pretty awful stomach issues.
And he's been really fevered all day long.
I miss IL-2 because at least when he was feeling so sick,
we were in the ICU where they were monitoring everything.
Here I worry that something could be really wrong,
and we are ignorant of what it is.

I'm a worry wort.
It's in my blood.
(I wonder if that's spelled correctly?) 

And we should still have one week to go before he gets a break.

I'm praying today is just a bad day,
and that tomorrow he will feel  a little better...
Feel free to join me.

I really, really hate seeing him so sick.
Love to all.