Interferon and Avastin-and my Resolution.

Interferon and Avastin.

WARNING:

This post is long,

not well thought out.

And a jumbled mess.

Deal with it.

In my last post I wrote about our hesitation

about our new drug.

I've read about the side effects,

and went in with a lot of questions for the Dr.

Sometimes I must look like such a bossy wife when we

meet with the Dr. and nurses.

Seriously, Trav is so laid back and mellow,

and then I come in all high strung and worried,

and full of questions...because "I read this...and I read that..."

They really must be thinking these two things.

1-How did these 2 end up together.

and

2-We are the medical professionals.

Stop reading so much.

To answer these questions I would say this.

1-We balance each other out nicely.

Usually.

and 

2-I'm trying to stop reading so much.

Sort of.

(And in my defense the people who write the stuff I'm reading

know a whole lot about RCC.  Sometimes... (most of the time),

it all goes right over my head.

They make me wonder if we should be seeing a RCC expert.

But then I'm reminded of how much we dislike our RCC expert,

and how little he listened to us.

And how much we really love our general ONC.

Who still calls T "professor".

And who called me "Marianne" the other day.

 

I feel so much that he is fully invested in us,

while our specialist makes us feel like a number.

 So we are trusting our lovely Dr. and remembering

that our specialist and him do confer.

And this post is not going at all where I intended it too..

So I'll now stop rambling about the Dr.'s and all of my hesitations

and I'll start rambling about our past week.

Monday Trav got his first injection at about 4:30 at the Dr.'s office.

And around 7:00 that night after we'd eaten dinner, I was cleaning up and I 

heard Sienna say "Dad, you are really shivering!"

Sure enough,

Trav was on the couch,

and was rigoring.

And I knew we were in for a treat.

We got out an electric blanket,

and 6! huge blankets and bundled him up,

and about an hour and a half later,

he finally started settling down.

And had a pretty restless night of sleep.

 And quite honestly,

I just sat there and cried.

 

This was not something I wanted my poor kids

to see, and not something I wanted to experience again, 

(IL-2 was enough!),

and more importantly,

not something I wanted Trav to have to deal with.

 

Wednesday he went into get his first Avastin infusion.

And they gave him another shot about the same time.

 

He didn't rigor Wednesday,

but got VERY fevered,

and honestly was really out of it for a few hours.

 And after he finally dozed,

and woke to a bucket of sweat,

and then dozed a little more,

I cried again.

 

You'd think I was the one having all this crap put in me!

 

By Friday,

I was feeling ready to throw in the towel.

I was miserable.

Trav hadn't had a good night sleep in a solid 3 weeks.

(Really, he has been missing his sleep!)

 He gave himself the shot around 8,

(After a little pep talk from Trav, to Trav)

And we watched the clock wondering when the fun would begin.

I was expecting the worst,

and we sat around waiting.

And T watched TV while I watched T.

And then we both fell asleep,

and stayed asleep for most of the night.

 

FINALLY Trav got a decent night of sleep.

Was it wonderful?

No.

But there weren't rigors, 

and he was able to sleep through the fevers and aches and chills.

And I didn't cry.

 A miracle itself this week.

This was the first night Trav hasn't woke up probably 15 times.

Only a few.

 

Now I don't want to belittle his meds 

and make it sound easy,

because his body is constantly aching

and he still has so much fatigue.

He's constantly exhausted.

He sits on the couch to watch TV,

and within seconds he is asleep.

But we are both hoping that he will be able

to start sleeping good all night, every night,

and will be able to gain some strength again.

We are hopeful that the side effects will be manageable

and he will be able to sleep through the toughest of it all.

We are hopeful that his stomach will be able to get back to normal.

And obviously,

we are hopeful that it will work!

We want a semi normal life back!

 

Since my last post,
I have spoken to a few people who this drug has done wonders for.

Their dosing is different,

one of them only has interferon once a week, 

rather then 3 times a week...

And we are definitely going to remember 

this if 3x is too much to handle.

But we will just go with the flow for now.

Trav just gave himself a shot,

the kids are in bed,

and we are waiting for it all to kick in.

And praying it is a sleep filled night and things go ok!

 

Frankly,

things have been beyond hard the past few weeks.

Really, the past year,

but the past few weeks have put a strain on us.

We had no idea how blessed and lucky we were 

when he was just getting weekly infusions,

with very minimal side effects.

 

2012 was just plain HARD.

We've spent weeks in the hospital,

and Trav's body has been through so much.

He's lost weight...(I've gained it!),

and it's been a test to our entire family.

 We've had to answer some tough questions from our sweet 

little ladies,

and have had to rely on each other an awful lot.

 

We've missed 2011.

 

That being said,

we've also learned a lot about how amazing our friends and families are this past year.

They are giving, thoughtful,

relentlessly caring people.

They pretend to not notice that I have bags under my eyes and say

"you look fabulous!" so excitedly that I almost believe them.

They let me cry if I need to,

but almost always ask if they can hug me..

just in case I'm not in a crying mood.

I mentioned once that Trav's new craving was caramel apples,

and the next day we have 10.

Really, people just kept bringing them.

(Next time I'm gonna say he really wants me to have new shoes...

and we will see what happens?)

(Kidding.)

And we still think about the fundraiser held for our family daily.

And we are in awe of that night and how loved we still feel from it.

And just now, as I was writing this post, 

someone rang the doorbell and ran,

and left us all our favorite drinks and a beautiful card giving us encouragement.

The little ladies friends' parents have been so nice to understand

when we send the kids to their house,

and when people stop by and Trav isn't feeling up to snuff,

they understand when I plainly say,

"You can't come in right now."

They just smile and understand.

And I appreciate that!

We are surrounded by goodness.

And truthfully,

we've needed it, and are beyond grateful for it.

 And we both wish we could stop being on the receiving end,

and start being more giving.

But I guess this is where we are in our season of life...

and we hope you all know that we couldn't get through without you.

 

I've made it a goal to find a way for Trav to get back

some of the oomph he's lost this last year.

That's my resolution!

Join me?

You don't need to lose those pesky lbs anyways....

 

Gold star to anyone who made it to the end of this post.

For real.

 

 

{Tomorrow}

For the past million years that Trav's been fighting,

(OK, only 7. Whatever. Feels like MORE.)

I've been scouring the Internet for resources,

information, and actual people who are facing our same battles.

I've found a few message boards where people

discuss how they combat side effects,

clinical trials, and what they might do in your situation.

Some of these people know more then a lot 

of ONCs out there.  They are a smart, knowledgeable group,

 these RCC patients.

At first, I became obsessed with these boards,

and with each new update, or email,

I would read with a thirst. 

It wasn't good for me, or us.

There were too many deaths.

Too many really bad side effects.

Too many abnormal situations.

And I found myself thinking 'what if' way too much.

So I have stayed away.

Maybe that makes others in our situation find me a little naive

and not the best advocate for Travis, 

but to be a good mom, and wife, I have had to learn to trust

in our doctors, and our feelings about the drugs we were gonna use.

Last night,

for the first time in a few years,

I found myself searching these boards and sights again.

I just needed to know more about what we are facing when tomorrow comes.

I've learned not a lot of people are on this group of drugs

together.  And I've learned that interferon is gonna

be even tougher then we thought.

One person has compared her side effects to IL-2.

(rigors!)

And another has said it will feel like the worst flu he's ever had.

He will be in pain.

And just as soon as he gets over it,

he'll get another shot.

It's time to start another treatment.

He's had too much time 'off' while figuring out our game plan,

and the insurance has approved it all.

So tomorrow he will start.

 As one of our cancer friends said yesterday,

"sometimes you just have to make a call and go with it."

We've made our call.

And I keep reminding myself that if it is too hard,

we have other options.

And we have a Dr. who will listen to us and help us make hard choices.

I am feeling very unsure that this is the route that we should have gone,

and very worried about  Travis.

And the girls.

Every person handles side effects differently,

so I am crossing everything I can cross that this is 

tolerable for him.  And praying that we can find a semi normal

lifestyle again.

I'd like 2013 to be better then 2012.

Is that too much to ask??

 Oh,

And while I'm here-
A big giant thank you to our lovely neighbors and friends who take such

good care of us.

We are being fed delicious dinners once a week,

(my kids are getting used to all this home cookin!)

We have yet to have to shovel our driveway.

We've been showered with love the past few years,

and we are still so grateful to everyone for understanding

just what we need, and for always caring.

Thank you.

Wish us luck!

 

 

{New Plan}

Travis and I were able to meet with the Dr. today to discuss our next 

step in our treatment plan.

He has been on his 2 week break from Sutent,

and honestly is still feeling the side effects.

He does feel a little better then when he is on the drug,

but is still swollen, tired, and his poor stomach still has

many aches and pains.

We discussed all of our options today with the Dr.

When Travis was diagnosed the first time,

there wasn't many options in the field for RCC patients.

Today, the Dr. gave us a list, 

and while there aren't dozens,

there are options.

I just couldn't help but be grateful that we do have the options 

we have.  I can't imagine how terrifying it would be to not even

have the chance to choose your treatment plan.

 10 years ago we wouldn't have been so lucky.

After discussing all of our choices,

we opted to go with a mixture of drugs.

The first is called interferon, which is the oldest drug in the book.

And another called Avastin.

Avastin is infused, so that old port will come in handy again.

He will go every other week and the infusion takes about an hour.

Interferon is a shot that he will get 3 times each week.

And it sounds like either he, or I will get to administer it.

In his belly.

Ewwww.

The side effects for Avastin seem tolerable enough.

And really, taking that pill each night has been so hard for 

Trav's stomach that I think he will welcome going in for infusions again.

But the side effects for interferon will be harder.

It sounds like the stomach problems wont be as bad,

which is really fabulous, but there are lots of side effects.

Mostly flu like symptoms.

Which sounds awful and hard...

Poor Travis.

He's honestly felt like  he's had the flu for months now.

I am so grateful for how hard he fights for us.

 I watch him pull himself out of bed each morning and head to 

work when I know he feels incredibly sick,

and it reaffirms that I married a pretty amazing man.

Our lives have changed drastically in the past year.

And it's been very hard.

Harder then I really ever imagined.

 It's incredibly hard to watch the person you love feel so sick

with no relief or end in sight.

It's been hard on our kids.

The cold is affecting him worse then ever...

(in fact, he wears special thermals that are supposed to trap in heat every day,

and is still freeeeezing.)

So he isn't able to go outside and build a snowman,

or go sledding.

 Dad can't wrestle with them anymore.

On NYE we went to dinner and Adyson watched a

Grandpa wrestle with his grand kids.

Adyson looked at me and said it makes her sad that her

dad can't do that.

And it broke my heart.

 But then I see the ladies snuggle up next to him on the couch to warm him up.

And they make him watch videos on their ipod,

and he is always willing to read to them and will

spend every second he has catering to them.

And on every single good day,

he is thinking of something fun and special for them.

I hope they realize that he is stronger then most dads out there,

just in a different way.

This ended up being a pretty long rant for a little update.

Sorry about that!

Anyhow, they will get this all approved by the insurance and we will

begin soon.

Feeling nervous and optimistic.

Even though I stated there are options,

there's still  not enough.

We'd really like it to work,

and we'd really like it to give him,

and all of us,

a better quality of life!

Thanks for checking in.

If you made it all the way to the end of this

huge post,

I applaud you.

A little PS-
I love the Cancer Center her in Logan.
They treat my Trav like the rockstar that he is.
So grateful to them.

Results

Oh ya...

People check this thing.

I forget sometimes and keep getting random

worried texts.

I'm sorry.

Life is BUSY!

It is Christmastime!

Travis ended up getting his fluid 

removed 2 weeks ago Friday.

It was gross and a little painful.

I wont give you details...

but ewwwwwww.

So we spent the weekend waiting.

And a few days into the week,

waiting.

And then Trav said,

I'm pretty sure they are only gonna

call if it's bad news.

So we've had no call...

so the fluid must be just that,

fluid.

Ewwww.

And we weren't too nervous about the 

bone scan, mostly because

he can sure feel the cancer on his rib.

We assumed if he had it on other bones,

he'd probably know.

So we are gonna enjoy Christmas.

Trav takes his last pill the Christmas Eve Eve,

so we are hoping that he is able to feel well enough 

to enjoy Christmas.

We will be taking it easy,

but doesn't that sound lovely?

Taking it easy at home with the kids for a few days!

We are excited.

He will get a Bone infusion just after Christmas and 

he and The Dr. will discuss treatment options.

I am discouraged and sad that it's already time for a change,

but hopeful that the next drug will be the one.

And maybe the side effects wont be so bad.

Thanks to all who have been texting and calling.

I'm sorry I neglected the old blog.

Merry Christmas Everyone!

{Results}

I had planned on waiting till the bone scan results came

back before I posted results,

but I just feel like writing and getting it all on down,

so everyone knows exactly what we are dealing with.

The lungs were stable.

The liver was stable.

The rib was stable.

And there was very minimal growth in his kidney.

 Not an amount that is super worrisome,

but with a very minimal growth there last month as well,

the Dr. is thinking maybe we may have to consider other

treatment options.

Speaking of his treatment,

let me backtrack a bit to last Thursday.

He met with his Dr. and

they came up with a new game plan.

The full dose of Sutent is just too hard on him.

When I wrote last that the quality of life was sucky,

I meant it.

It's beyond writing it down,

and really it's pretty depressing...

so I wont bore you with details,

but he just can't do it anymore.

So after much discussion with other Dr.'s and specialist

they have decided to lessen his dose.

So instead of the full dose now,

he is half dosing it.

Which hopefully will give him some more energy,

less stomach pains,

and up his quality of life a bit.

Okay, so that was as of last Thursday.

Back to the now.

The Dr. is concerned with the fact that on the full dose,

he's had growth in his kidney, and now with a half dose,

that's not gonna improve.

(Remember, he only has the one. It needs to work.)

He wants Trav to continue for this cycle,

and then next month when he goes in for his bone infusion

they will talk about maybe trying another option.

There are very few options left..

so we really want the ones we use to last as long as possible.

Still unsure what the game plan will be,

and wont know for the next month.

And he will continue on this drug for now.

My biggest worry right now is

that they found fluid in his lungs again.

I'm not sure if you remember but he's had this before.

Here in 2008.

And when we did some research back then,

we found this out as well.

Here.

Those days were awful and full of worry.

And sweet relief when we learned it was just plain old fluid.

So, 

with that being said,

Please pray that this fluid isn't cancerous.

I have that feeling in the pit of my stomach because

I'm scared.

And really,
it seems likely to me that it is just fluid again.

So I'm gonna believe that all I can until he gets the fluid

drained next week!

Thanks to everyone for checking in.

I sure appreciate the many texts and e-mails

I've received the past few days.

We will keep you posted.

Love to all.

Blood Infusion, CAT Scan, and Bone Scan time.

Travis had a bone infusion today,

and was able to discuss how he's progressing

with the Dr.

Sidenote: The good Dr. has started calling him 

'Professor' because of the beard.

I like it.

Anyhow,

Travis told him how awful the past few months

have been,

and gave him the long list of side effects and talked

at length about the quality of life with this drug.

Like, the fact that

it

sucks.

We both just can't imagine him doing many

more full 4 week rounds of this.

It's just so hard for him to crawl out of bed,

and really, he hasn't felt even remotely decent for weeks.

It's weighing on him, and all of us.

With that in mind- we are making some decisions

on whether to lower his dose to 35 mg from 50,

or to try 3 weeks on, 1 off,

or even 2 on, 1 off.

That is still undecided,

but hopefully we will make a choice soon.

He is going in tomorrow to get a blood infusion,

which we are both happy about.

I'm praying it will give him an extra boost before

the next round starts.

And maybe we will have a good weekend!

Tuesday he will get his CAT scan.

Yep, we are scared.

Thursday he will get a bone scan.

It's been a long time since he's had one,

so he's due.

And yep, scared for that too.

Those days are days I wouldn't wish on my worst enemies.

And my stomach drops when I think about them.

Say a little prayer for him.

Thanks again to everyone for everything.

All these dinners with desserts are really killing my waistline,

but they sure taste good!

xoxo

{Sutent Round 5]

We made it through another round.

But barely.

Wow, this one was rough!

I used to feel like I could write a blog post

with a pretty upbeat outlook.

And I feel a little bit like a downer now.

Sutent is rough.

And doesn't seem to get better over time.

So forgive me for sounding whiny,

or blue, or reeaaaallly tired.

I'm going for honesty instead.

This round was particularly hard on Travis

and we are now into his first off week and 

he still isn't bouncing back completely.

We were so looking forward to 2 weeks of him feeling

good, and we are moving onto week 2 and he hasn't really

had too many good days yet.

Praying this next week is a good one!

It was also a different round,

and it's hard to explain why it was so bad-

it isn't just one complaint or ailment that

makes it rough.

He wakes up most mornings after a stomach cramp filled,

very stuffed up,

sleepless night and his eyes are practically swollen shut.

And the fatigue.

Oh the fatigue!

It's something different then just being a little tired.

It's like he could sleep for days on end and

still feel exhausted.

He pries himself out of bed,

and fights through his nausea most of the morning.

He's not able to eat and is lucky if he has an appetite by lunch.

And the cold.

Who knew that that side effect would be so troublesome?

It feels a good 20 degrees colder to him,

and takes twice as long for him to warm up.

He walks in the door and has to bundle up for a good hour

before he warms up. 

And then I force him to eat a little,

(remember, he has no appetite)...

and then he is pretty much down for the count.

It hasn't been a fun 4 weeks.

I miss him.

And he misses him.

And we all miss the way things once were around here.

I hate seeing him feel so crummy.

And he hates it even more I'm sure.

But we've learned to take it one day at a time.

And we make the best of 'good days'.

 And we even try to make the best of 

'bad days'.

The hardest part of all of this is we never know what's

'cancer caused' and what's 'side effect caused'.

 Like this little cough he has.

Is it a side effect?

Is it growth in his lungs?

Every time something small like that comes

up, my stomach drops in worry.

We should have answers to some of those

questions with a scan being scheduled soon.

Praying, so hard, that Sutent is still doing it's job.

I know we have so many praying with us.

I'm so grateful to have a husband who can feel

as awful as he does,

and still work every. single. day.

And still be an amazing Dad.

He is never too tired for his kids.

We are so lucky to have him.

I will post again when we know the date of the scan.

Thanks again to all of you who have brought in weekly 

dinners, and who bail me out whenever I'm in over my head.

Which is often.

xoxo