{CABO}

First,

Thank you all for your kind thoughts and words from my last post.

We always are amazed at the support we have.

We feel very loved.

The past few weeks have been hard.

Trying to figure out the best approach for treatment is tough.

We have been back and forth trying to make a decision.

We decided to pursue a drug called CABO.

(Really Cabozantinib).

How mean to call this drug CABO.

I mean,

really.

We'd much rather be basking in the sun IN CABO

then taking this drug called CABO.

Mean I say.

We've never even been to Cabo.

(Sad face.)

Ok. Enough about our lack of fun filled Mexican Vacations.

CABO isn't approved for RCC.

But for those who have used it,

it has given them good results.

Read this.

And more  here.

That makes us hopeful.

Ive been corresponding with Chris' wife Dena

for a few months now,

and they've also talked to their Dr.

about our case, and pursuing this seemed the right option.

We are so lucky to have a Dr. who listened and ran with it,

despite maybe being a little nervous to prescribe something we don't know 

much about. 

Getting it approved by the insurance took some time.

And work by the Dr.'s office, I'm sure.

(Big Thank you to them).

So as of today,

after one HEFTY co-pay,

the CABO is on it's way.

 We are ready to start something,

it's been too long without anything. 

And I'm terrified.

This drug isn't gonna be a walk in the park.

We expect a lot of the same side effects that he has with Sutent.

And that was rough.

But Trav wants to keep fighting,

and is ready to face all that comes along with it.

I married a good man.

I daresay he's better then most.

(I'm biased so I'll just say better then all...)

Despite how hard the past few weeks have been emotionally,

Trav's felt semi-decent.

He's been able to have a few really good days mixed in with the bad.

We cherish those good days!

Today, for some reason, 

he's been extremely miserable with a stomach and headache.

Hoping he will recover quickly!

Please pray for him to do well on this drug.

Pray his body can handle the toxicity.

Pray the Dr.'s can know the correct dose for him.

Pray the girls can still feel we live in a happy home.

Pray I can manage to give them all what they need!

Sure love and appreciate our huge care giving family.

Travstrong! :) 

      

     

          

  

Results

Results from the latest scan came back today,

and they aren't good.

There was growth pretty much everywhere,

making it pretty obvious that the current drug isn't doing 

any good. There isn't any new spots, and that, at 

least is good news.

While in my gut, I knew this drug wouldn't work,

hearing it and facing it is really hard.

We are running low on options,

and the ones left seem

hard to get,

hard to pay for,

hard to live with.

Bless Trav's heart.  He just doesn't feel good.

We are trying to figure out our next step.

A clinical trial would be the best and smartest move 

for us, but Huntsman isn't currently doing any that fit the bill.

So we are looking at out of state options,

and will be figuring out if there is any possible way to make it happen.

I'm doubtful, but hopeful.

We are also thinking about a drug that isn't approved for RCC,

but will be eventually, and it looks promising for 

heavily treated patients (Trav), and bone mets (also Trav).

Friends we have made through the RCC world, 

The Battle Family,

are currently using this drug (CABO) 

and have written about it here.

We would have to find a way  to get it,

and pay for it, and it all seems impossible,

till I realize that they have done it,

so maybe we can too.

 And they have made it clear they will help us

figure out the loopholes.

We also are wondering if re-challenging the drug that 

worked so well, for almost 4 years,

is worth a shot. 

It feels a bit like we are grasping at straws. 

And we dislike it immensely.

In all of the research I've been doing,

and with the help of people about 800x more knowledgeable

then I,

we've also learned  how rare it is for RCC to happen in both

kidneys.

From what we've read, 

the second tumor is a metastases, but a second primary.

 This usually means there is a gene causing it.

This means that he may have a genetic disorder that has 

caused the cancer in the first place,

and we need to know if he does,

and what exactly it is,

in order to know if our kids could also possess it.

I mean, 

when it rains!

We are looking into going to NIH in Maryland,

a hospital that we don't have to pay!

that will be able to tell us all about it,

and diagnose him and possibly have treatment options available

to us.

Right now,

I wish we were East coast living people.

Because the options seem to be primarily over there,

and not here.

It sucks feeling up in the air without a clue

what to do next.

But we will figure it all out as quickly as possible.

And pray and hope and pray some more for the best.

 As always, 

Thanks for checking in.

Feel free to leave a comment telling Travis how amazing he is.

That man of mine, he works full time,

is a fantastic husband and father,

and he is very sick,

and doesn't feel well.

Let him know that I'm not the only one who feels this way.