Sutent: Round 2

Wahoo!

Round 2 is done!

Never has anyone been more ready

for a 2 week break then T.

Take my word for it.

During his last 2 weeks off he started feeling much better

and going in to his first week

he did pretty well.

Week 2 the stomach pains began.

And the heat rash/fever.

And he welcomed the complete exhaustion that is Sutent.

Week 3 they all worsened.

And the joint pain began.

His joints were just really, really stiff and pretty painful.

Week 4,

They somehow got worse.

The stomach pains were pretty unbearable

and the joints were pretty awful.

The fevers seemed to worsen.

And he was ready to be done!

But,

did you notice I didn't add any nausea to our list?

He had it once or twice,

but hasn't thrown up at all in the past 4 weeks!

That is very good news for him.

My dear husband is amazing.

He didn't miss one day of work this entire cycle.

And I can promise you that the stomach aches and fatigue 

would keep most men home.

He's a keeper.

We are going to really try to enjoy the next 2 weeks 

before he starts again.

And we should have a date-ish set for scans soon too.

Full of hope and dread.

Love to all.

(Oh and the hair is a lovely shade of grey.  Quite distinguished really.)

 

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.

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.

Well...

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,

incredibly 

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!

Yay!

Today we went and bought a pretty little car that is

MUCH better on gas mileage for us.

And we love it.

BUT,

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.

Awesome.

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.

Now,

I'm going to snuggle my husband

because we have 4 more days till hell month

begins again.

Jealous?

Love to all.

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.

Balloons!

The day after I wrote this post we woke up to this beautiful sight.

 (The view from my front door at 7:30 am)

 Balloons!

Everywhere!

 Hundreds of them.

Lees in Smithfield ran out of orange

and started using yellow.

And Lees in Logan was bought out too.

(and more were added throughout the day)

They were brought with the message that we can feel lifted up.

And we did.

I mentioned that that night was extremely tough on our kids.

Waking up to this sight meant the world to them.

It made them remember that we have so many special 

people taking care of us.

And that, yes, life can feel hard,

but we aren't doing this alone.

This was done by friends,

sent by texts-to everyone and anyone who wanted to support us.

These dear friends-I know, had no idea how much this would mean to 

the little ladies.

Thank you for your love!

 We let them all go in the afternoon with lots of wishes floating up in the orange dotted sky.

 It was a beautiful sight!

A little update on  T and sutent.

This week was he did ok.

He had 4 shots Tuesday 

and  while the rib pain is 

still very present,

it's not as unbearable as before and 

he is able to log a few hours of sleep at a time,

where before he was waking up every 20 minutes in pain.

 

The stomach issues aren't fun for him.

He always feels pretty off,

and crappy,

but it's manageable.

 Each night he gets a heat rash that spreads

up from his chest to his face and makes him really hot.

Then cold,

Then hot again...

and cold again..

(How many of you just started singing katy perry lyrics?)

There are a few side effects I will spare details on,

for T's comfort and because ignorance is bliss...

but it's been ok.

Some days are really bad.

But for the most part he's managing.

We just cross our fingers for a good day each morning 

and see what happens.

It's like being on a roller coaster in the dark.

Except not fun, like Space mountain.

We feel loved and taken care of and are doing fine.

Thank you again for checking in!

 

Oh boy.

Sutent is gonna be fun!

(Dripping with sarcasm).

Tonight I looked at T and said,

"How long have you been on Sutent now, 2 weeks?"

And he replied...

"1."

It feels more like 4.

Anyhow,

Here's how things are shaping up for us.

After a few days on Sutent the fevers 

started to slow, and for a few days

STOP.

No fevers?

No sweating them out for hours?

Heaven.

And his cough,

which has been really terrible,

has lessened quite a bit.

Not gone,

but gotten better!

And the nausea?

It's getting there.

Score 3 for Sutent.

 Right?

Then,

Wednesday night Trav woke with some serious

rib pain again.

Because his body is mean and can't let him 

feel good for even a second!

Ugh.

Tomorrow he will go meet the pain

specialist again to see if they can help him out.

He gets absolutely no sleep with this awful pain,

so the sooner he gets it fixed,

the better.

We were thinking that as soon as the rib

pain is gone, he might start to feel like himself again.

Until today.

I'm pretty sure the side effects decided to kick in today.

He's felt awful.

All day long.

 His skin is yellowing a bit,

which I believe is normal.

And he got one heck of a fever today.

We know that they are coming,

but I have a pretty yucky feeling that

they are gonna be mean side effects.

And I  feel bad that my poor T hasn't felt

remotely decent in like 4 months.

(Ok, 4 years really, but even worse lately.)

I think him not sleeping isn't helping so I'm really 

crossing my fingers for the injection to help tomorrow.

Tonight I'm missing my husband.

I know he's here,

and we are so blessed that he is still here...

but he's miserable.

And he's not really himself.

 I'm just praying that these

side effects wont be too hard on him 

and once his rib pain is better he will

be able to find some energy,

and feel normal again.

There is a silver lining though.

 I mentioned that his cough was really bad before,

and it get a little better just before the rib pain began again.

And his 'morning sickness' has been a  lot better too.

I can't imagine how incredibly painful

it would be for him to cough that hard,

and be that sick with that pain.

Right now with his cough being as minor

as it is, it's still pretty painful.

We are both grateful for that.

And grateful for  the moments of normalcy we

are having.

 Even though this post sounds like it's all awful,

we have some really wonderful, happy moments

where life feels normal again.

I truly believe we will get there.

I think it will take some time to get used to 

these side effects,

but like his last drug,

his body will adjust.

I think we just have to be patient.

We are both working on it.

Thank, as always for the many people here cheering us on.

We sure love you!

 

 

 

{Another new Chapter}

(This post is long winded. Forgive me?)

Scan days.

I can't tell you how much we hate them.

For a good solid 2 weeks beforehand I 

picture the Dr. coming in giving us either the

best, or the worst possible situation.

 And we lose sleep.

And sanity.

Today was the dreaded day.

 We had scans at  12:30 and had

an appointment to meet with the Dr.

at 3:00.

And we sat in his office till 4:30,

and then he finally showed up.

Here's the gist.

He's not responding to IL-2.

There was a little growth everywhere,

and a few small new tumors in his kidney.

We knew it was a small chance.

We knew.

But man, having hope made us really want it.

 This was our only shot at a cure.

And I had us sitting on a beach 10 years from 

now saying things like,

'Remember when you had cancer?'

But, that's not in the cards.

But we have options.

And our Dr. was unusually optimistic about them.

He has recommended a drug called Sutent,

and we've read a bit about it in the past.

For some, 

this is the miracle drug.

The drug that gives them more time.

And he really feels like because of Trav's

age, and otherwise healthy body,

this could really work for him.

Sutent has been used by many in the RCC world,

and it seems for some the  side effects are murder,

and for others,

they are manageable.

The Dr. seemed to think for Travis they would

be manageable.

We are crossing fingers.

And all crossable body parts.

And Sutent is pricy!

We were told today that it would cost $3600

each month, AFTER INSURANCE.

BUT, the Dr. is already working quickly to 

figure out some financial aides for us,

and we are looking into a few options.

I feel like those who threw the beautiful fundraiser

together for us, were very inspired.

Please know, from the bottom of our hearts,

we are grateful.  Truly.

Today we were very grateful for our Doctors.

I'll be honest,

we had a hard time getting used to our new Doctor

at Huntsman.  We adore our Doctor here in Logan,

and still feel that he really knows, and wants the best for 

Travis.

And we didn't feel that at first with our Doctor in Salt Lake.

But today his optimism was so helpful.

And he was so kind.

He mentioned that he has about 20 people with RCC

and out of the 20, he wanted so badly for the IL2 to work

for Travis,  because of his young age and hot wife..

(ok, he didn't say that, but I'm trying to keep you awake.)

(I think he just really likes Travis, because what's not  to like?)

He said "If only he could handpick how it worked'.

He was so dissapointed that it didn't end that way.

And he was so optimistic that Sutent would be a good fit for T.

He said for some lucky people Sutent has worked for up to 5 years.

And while he can't even suggest a timeline for us,

because Cancer has a mind of it's own,

he's very hopeful that it will buy us some time,

and hopefully there will be a promising clinical

trial when Sutent does fail.

And then the Nurse practitioner who is really

in charge of us during our IL-2 doses and the

weeks we spent in the ICU came to visit for a minute.

This woman is a Saint.

She is the boss during those weeks and says who

gets doses and when.  They call her at all 

hours of the night, and I imagine she lives on no sleep.

She quite literally was our life saver while we were there

and we adore her.

Today she just hugged us both,

and with tears in her eyes told me 

how heartbroken she was that the IL-2 failed.
She also said that even though his
scans showed growth, she knows
that he will still have some beneficial
affects from the IL-2.
She feels like it will kick his immune
into overdrive and jumpstart the new chemo.
And she really feels like people with Il-2
in their system just plain live longer.
It wasn't 2 weeks wasted.

We felt so loved by both of them 

and it makes a big difference.

Instead of leaving heartbroken today,

we felt very optimistic.

We have an option,

and are praying,

really-really

really

hard that it's a good one.

We started taking the Sutent today

and will get a scan in 3 months to see how it goes.

If the financial aide works out we are hoping

that they can find a way to get it done in Logan

so we wont have to drive to Salt Lake so often.

If we have to, 

we will...but we are hoping it wont come to that.

His last drug he was on really kept

a lot of the Cancer side effects at bay.

The night sweats stopped,

and the cough,

and the nausea.

and the exhaustion.

They have really been plaguing Travis since he's 

stopped taking the Torisel.

It's been rough.

We are crossing our fingers that this new

drug will start to keep them at bay again,

and he will start to feel himself again.

That would be heaven!

We still feel really optimistic,

really ready for change.

It's been a tough few weeks.

And we feel really worried about

our lovely ladies.

Every now and then we realize 

how much we've focused on what's it's doing to us.

It's making Trav sick and tired,

and turning me into grumpy super mom.

And we feel sorry for ourselves and

We fail to notice the worry

our lovely daughters are feeling,

and tonight it became very apparent.

They've been praying for the cure.

And praying for a 'normal' life.

They don't understand why

they are the only ones with problems.

We tried to explain that each of their

friends have problems too,

and life isn't easy for anyone.

But they are 6 and 8,

and it just doesn't feel like that to them.

We've tried to explain how lucky we are to have such a 

happy family, but they were feeling pretty bad

tonight.  

Man, it's tough.

So selfishly, 

as usual!

We are asking for prayers that this drug to make

Trav feel like himself again.

Prayers for our girls.

We've told them instead of praying for a cure,

we should pray for patience.

And for happiness.

And for normalcy.

And for us to understand that 

our Father in Heaven has a plan for us.

Even if it's not the one we want.

We continue to feel so loved.

And so grateful.

xoxo