We were able to meet with Trav's
Doctor today and figure a few things out.
The scan came back showing some growth
in his rib area, and also in the mets to his lungs.
It's minimal, but still growth.
The Doctor is concerned that maybe our time with
our current drug is running out.
And we knew that would happen eventually.
For most people 4 years on one drug is unheard of.
But man, we love that drug.
It's left us able to live a very normal life,
and has worked for SO long in terms of RCC,
and more importantly, it's tolerable.
We have options.
There a a few drugs we can choose from,
but the Dr. is leaning towards one that we've read
a bit about.
IL2.
I've done research about it before
and it terrifies me.
From what little I know,
he will have this done at the U
with a Dr. that our Dr. speaks highly of.
He will have to be in the ICU for a solid week
while they inject the medicine
because it is so hard on your heart.
Which is scary.
Very.
He would have to do the treatment
more then once.
But, younger people seem to do well
with this drug and if it works,
the long term effects are well worth it for us.
Sadly, the Dr. used 5 years as long term-
and it's just not long enough.
There are a very few people who have quite
a good response to this drug,
and have no evidence of disease.
It's very rare, but if we end up doing this
medicine, that's what I'm shooting for.
The Dr. did say that we can continue with the
drug he is currently taking for the next 2 months
while we think about his and see what his scan looks like.
In my dream world his current drug would start to
work well again and his next scan would look good
so we could continue on, but I think I need to face the
odds that that option is unlikely.
So we will go 2 months.
And fast and pray really hard
that his next scan will look good.
And if it doesn't then we will face that when we get there.
In the meantime,
he has to get a blood transfusion tomorrow
because his iron is so low.
That will help him feel a little better.
And the Dr. was going to talk to an pain specialist
about giving T and injection on his rib so the pain
will subside.
I'll keep you all posted.
Thanks again.
We sure appreciate you all.
Doctor today and figure a few things out.
The scan came back showing some growth
in his rib area, and also in the mets to his lungs.
It's minimal, but still growth.
The Doctor is concerned that maybe our time with
our current drug is running out.
And we knew that would happen eventually.
For most people 4 years on one drug is unheard of.
But man, we love that drug.
It's left us able to live a very normal life,
and has worked for SO long in terms of RCC,
and more importantly, it's tolerable.
We have options.
There a a few drugs we can choose from,
but the Dr. is leaning towards one that we've read
a bit about.
IL2.
I've done research about it before
and it terrifies me.
From what little I know,
he will have this done at the U
with a Dr. that our Dr. speaks highly of.
He will have to be in the ICU for a solid week
while they inject the medicine
because it is so hard on your heart.
Which is scary.
Very.
He would have to do the treatment
more then once.
But, younger people seem to do well
with this drug and if it works,
the long term effects are well worth it for us.
Sadly, the Dr. used 5 years as long term-
and it's just not long enough.
There are a very few people who have quite
a good response to this drug,
and have no evidence of disease.
It's very rare, but if we end up doing this
medicine, that's what I'm shooting for.
The Dr. did say that we can continue with the
drug he is currently taking for the next 2 months
while we think about his and see what his scan looks like.
In my dream world his current drug would start to
work well again and his next scan would look good
so we could continue on, but I think I need to face the
odds that that option is unlikely.
So we will go 2 months.
And fast and pray really hard
that his next scan will look good.
And if it doesn't then we will face that when we get there.
In the meantime,
he has to get a blood transfusion tomorrow
because his iron is so low.
That will help him feel a little better.
And the Dr. was going to talk to an pain specialist
about giving T and injection on his rib so the pain
will subside.
I'll keep you all posted.
Thanks again.
We sure appreciate you all.
9 comments:
Ouch. My heart hurts for you guys. Again, I am so in awe of your strength - you both are an inspiration to everyone around you. I'm so lucky to be your neighbor. Lots of prayers, and let us know when we can have a whole big ward fast for you guys!
A ward fast! Heather, I love that idea!
I just love you two. And your ladeez.
I've been thinking of you so much Hayley and have sent lots of prayers your way.
Well you can count on us for the Ward prayer/fast, great idea Heather. I wish there was more I could do though. Let me know when you need a break, or a Diet Coke with lime! Why do medicines have to be so scary sometimes. I wish the options were easier, but thank heavens they're there! Love you guys, good luck!
Hay, I dont have many words except for to say I am so sorry! You family will continue to be in my prayers as always and I hope that they can do something for Travs pain! Fasting and lovely thoughts your way!
I'm so sorry! I've been thinking about you guys a lot. Keep hanging in there and focusing on the positive, which you seem to be good at. I know the rest of us will never know truly what you are going through, but please know there are people you've never officially met (me) praying for you to have the strength and peace you need!
I'm pretty sure you can count on tons of people from my "ward" to join yours!
To all Hayley's friends-- thanks for being there for my sister. Your support means a lot to all of us!
Love. I LOVE you. And of course always thinking about you. Always praying for you. You'll just keep finding strength you never knew you had in you. You are amazing, really. And for when you don't feel it, you just know there are so many people who know you are.
I'm sending lots of prayers your way Hayley. You're amazing. :)
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