anyone heard from jcortney?

Another friend on our minds...

the other day, too...hoping someone has developed a "keeping in touch" relationship with him. 

p

I've had two CT's since my last post.  The first showed growth on both the tumor on the bottom of my tongue (inoperable and can't be radiated) and on the mets in my lungs.  Oncologist (and I) decided that Carbo and Erbitux had stopped working and he switched (thank goodness, I've had enough of Erbiutux) me to methotraxiate.  After 8 weeks on the new (very old actually) drug my last CT showed no growth at all.  We are hopeful that the next scan will show it shrinking, and I think it will.  I'm kind of lucky (probably not the right word) that the tumor on my tongue produces systems that can be tracked.  It has wound itself around the muscle and had my tongue pretty bound up.  At it's worst, my tongue was pointed all the way toward my right cheek and I would bit it every time I ate.  Now, it points almost straight and I very rarely have a biting issue.  Also, my speech was pretty impaired as I would slur most of my words, that's about 75% better (I only have trouble with G's now ).

On Tuesday of next week I'm traveling to MD Andersen to see the very first Oncologist I saw when I was diagnosed.  He is about to start a PD-1 - PD-1L trial and I want to see if I qualify.  My Onc here in Dallas will probably get the same trial, I'm just hedging my bets.  The problem with these trials is they require a "cure" period.  That means 28 days of no chemo drugs of any kind.  If my next scan shows shrinkage, I'll be hard pressed to take the risk.  From everything I've read, these drugs should hit the commercial market in 2017.  So, shrinkage might mean waiting and no trial.  It's a bit of a conundrum.

The good news is I've finally started to gain weight and eating is not the almost impossible chore it was a few months ago.  I'm still committed to the "quality of life" commitment I made to myself.  If the tumor gets out of control (the tongue is game stopper not the lungs, believe it or not) and I can't eat or communicate easily, I'll need to make some harsh decisions.

Thanks everyone for caring.  You can't imagine how much that means to me.

Joe

jcortney said:

Not better, but not worse either....

I've had two CT's since my last post.  The first showed growth on both the tumor on the bottom of my tongue (inoperable and can't be radiated) and on the mets in my lungs.  Oncologist (and I) decided that Carbo and Erbitux had stopped working and he switched (thank goodness, I've had enough of Erbiutux) me to methotraxiate.  After 8 weeks on the new (very old actually) drug my last CT showed no growth at all.  We are hopeful that the next scan will show it shrinking, and I think it will.  I'm kind of lucky (probably not the right word) that the tumor on my tongue produces systems that can be tracked.  It has wound itself around the muscle and had my tongue pretty bound up.  At it's worst, my tongue was pointed all the way toward my right cheek and I would bit it every time I ate.  Now, it points almost straight and I very rarely have a biting issue.  Also, my speech was pretty impaired as I would slur most of my words, that's about 75% better (I only have trouble with G's now ).

On Tuesday of next week I'm traveling to MD Andersen to see the very first Oncologist I saw when I was diagnosed.  He is about to start a PD-1 - PD-1L trial and I want to see if I qualify.  My Onc here in Dallas will probably get the same trial, I'm just hedging my bets.  The problem with these trials is they require a "cure" period.  That means 28 days of no chemo drugs of any kind.  If my next scan shows shrinkage, I'll be hard pressed to take the risk.  From everything I've read, these drugs should hit the commercial market in 2017.  So, shrinkage might mean waiting and no trial.  It's a bit of a conundrum.

The good news is I've finally started to gain weight and eating is not the almost impossible chore it was a few months ago.  I'm still committed to the "quality of life" commitment I made to myself.  If the tumor gets out of control (the tongue is game stopper not the lungs, believe it or not) and I can't eat or communicate easily, I'll need to make some harsh decisions.

Thanks everyone for caring.  You can't imagine how much that means to me.

Joe

Joe, you have definitely been through a rough patch lately.   I'm really glad your tongue seems to at least be behaving and pointing the right direction.  With all the other crap you have been through I can't imagine biting your tongue with ever bite you take.   That's painful enough without all the side effects of everything else you are going through.  Putting some weight back on should help as well.  

Good luck with the visit to Houston/MD Anderson.   You deserve a break so we'll all be keeping you in our thought and prayers.   sounds like you will have some choices to make in the near future and like I always tell my son, options are good.   With options there are choices. Being able to weigh all options and the make an informed choice that's best for you, your family and your personal situation, is a good thing.  

i live in the Dallas (McKinney actually).   If I could ever do anything for you just give me a shout.   Just PM me   

Good luck with the Dr visit and please keep us posted.

keith

We are all so unique. What works for one, isn't the cure for another. I am amazed at how quickly different treatments have been coming to the market. There is so much hope. You are on my prayer list. 

jcortney said:

Thought I'd add

Something I did just to make me smile:

the tumors.....ya gotta stop them to reverse them....praying that shrinkage is in the near future! 

OMG...now THAT is some kind of car!!  Wow!  That made me smile.

p

jcortney said:

Thought I'd add

Something I did just to make me smile:

Nice!

jcortney said:

Thought I'd add

Something I did just to make me smile:

Now that IS a SWEET RIDE. I'm glad for you, I had a 1975 Stingray and loved it to drive.

Bill

jcortney said:

Not better, but not worse either....

I've had two CT's since my last post.  The first showed growth on both the tumor on the bottom of my tongue (inoperable and can't be radiated) and on the mets in my lungs.  Oncologist (and I) decided that Carbo and Erbitux had stopped working and he switched (thank goodness, I've had enough of Erbiutux) me to methotraxiate.  After 8 weeks on the new (very old actually) drug my last CT showed no growth at all.  We are hopeful that the next scan will show it shrinking, and I think it will.  I'm kind of lucky (probably not the right word) that the tumor on my tongue produces systems that can be tracked.  It has wound itself around the muscle and had my tongue pretty bound up.  At it's worst, my tongue was pointed all the way toward my right cheek and I would bit it every time I ate.  Now, it points almost straight and I very rarely have a biting issue.  Also, my speech was pretty impaired as I would slur most of my words, that's about 75% better (I only have trouble with G's now ).

On Tuesday of next week I'm traveling to MD Andersen to see the very first Oncologist I saw when I was diagnosed.  He is about to start a PD-1 - PD-1L trial and I want to see if I qualify.  My Onc here in Dallas will probably get the same trial, I'm just hedging my bets.  The problem with these trials is they require a "cure" period.  That means 28 days of no chemo drugs of any kind.  If my next scan shows shrinkage, I'll be hard pressed to take the risk.  From everything I've read, these drugs should hit the commercial market in 2017.  So, shrinkage might mean waiting and no trial.  It's a bit of a conundrum.

The good news is I've finally started to gain weight and eating is not the almost impossible chore it was a few months ago.  I'm still committed to the "quality of life" commitment I made to myself.  If the tumor gets out of control (the tongue is game stopper not the lungs, believe it or not) and I can't eat or communicate easily, I'll need to make some harsh decisions.

Thanks everyone for caring.  You can't imagine how much that means to me.

Joe

Yo, Joe! Thanks for checking in. A lot of us were wondering how you were getting along. So glad things are progressing for the better and QOL is improving too. Love the ride, kind of late to the mi-life crisis party but what the heck, you got a better reason. Enjoy! Don