Little video on Mel

Thanks for your concern….I think I am going crazy!!!!! 

Playing the "Good News, Bad News" game.  Every other day to UCLA…tests…

Bad News!  I think my last update said CT showed mel was worse, so non-responder to IPI.

Good News!  Brain MRI showed no new mets and the two they zapped were not growing! Yipee!!  

Bad News!  The Bone Scan showed the cancer has progressed more than we thought,  reported in Sternum, T-spine, L-spine, Left SI Joint,  Left Scapula, Bi-lateral Iliac bones and mid-left femur. (I had to Google these to find out where everything was).  Of course his right humerus lit up with the broken arm, so they couldn't  rule out cancer in the right arm and shoulder.  The last X-ray showed some holes that the Ortho was concerned about!   Onc started him on Xgeva shot once a month to help strengthen the bone.   

Good News!  After all the tests…Onc started him on E-7080 trial last week. We are hoping that this is the ONE!!  (channelling a little Keanu Reeves here)!  Hubby has some back aches and is tired…said he feels like an old man…don't know which drugs are causing that!! (listed side effect for both drugs). 

Still trying to go through the garage and get rid of  25 years worth of "my stuff, his crap"! (a  little Carlin humor)  Having a garage sale every Sat morning…I'm a little tired of them and the same people come by every week to see if there is any new junk!  LOL!  Just ready to donate what's left.  Almost have the garage packed up…about half the house done.  

We had a family meeting and decided that we would be packed and ready to go, then wait until we get a knock on the door telling us we need to leave.  This may allow us a bit more time to save $$.  

Got all of Dirk's medical records sent to MD Anderson, arranged for treatment there when we get moved.  Check one more thing off my list!

Whew!  Can I sit down and rest for a minute?

Back to UCLA next Wed for 2-week lab work and Dr visit.  For those of you on E-7080, a question.  How soon was the response to this drug?  Want to know what to expect.

Thanks everyone.

Jan, wife to Dirk

Thanks for your concern….I think I am going crazy!!!!! 

Playing the "Good News, Bad News" game.  Every other day to UCLA…tests…

Bad News!  I think my last update said CT showed mel was worse, so non-responder to IPI.

Good News!  Brain MRI showed no new mets and the two they zapped were not growing! Yipee!!  

Bad News!  The Bone Scan showed the cancer has progressed more than we thought,  reported in Sternum, T-spine, L-spine, Left SI Joint,  Left Scapula, Bi-lateral Iliac bones and mid-left femur. (I had to Google these to find out where everything was).  Of course his right humerus lit up with the broken arm, so they couldn't  rule out cancer in the right arm and shoulder.  The last X-ray showed some holes that the Ortho was concerned about!   Onc started him on Xgeva shot once a month to help strengthen the bone.   

Good News!  After all the tests…Onc started him on E-7080 trial last week. We are hoping that this is the ONE!!  (channelling a little Keanu Reeves here)!  Hubby has some back aches and is tired…said he feels like an old man…don't know which drugs are causing that!! (listed side effect for both drugs). 

Still trying to go through the garage and get rid of  25 years worth of "my stuff, his crap"! (a  little Carlin humor)  Having a garage sale every Sat morning…I'm a little tired of them and the same people come by every week to see if there is any new junk!  LOL!  Just ready to donate what's left.  Almost have the garage packed up…about half the house done.  

We had a family meeting and decided that we would be packed and ready to go, then wait until we get a knock on the door telling us we need to leave.  This may allow us a bit more time to save $$.  

Got all of Dirk's medical records sent to MD Anderson, arranged for treatment there when we get moved.  Check one more thing off my list!

Whew!  Can I sit down and rest for a minute?

Back to UCLA next Wed for 2-week lab work and Dr visit.  For those of you on E-7080, a question.  How soon was the response to this drug?  Want to know what to expect.

Thanks everyone.

Jan, wife to Dirk

Thanks for posting the link.

Just spread the message any way we can!

Thanks for posting the link.

Just spread the message any way we can!

Hey Dale,  Sorry to hear about your wife's nasty side effects.  Our regular Onc at UCLA is Dr. Chmielowski.  We got to see Dr. Ribas once while our Onc was on a trip.  He seems nice!  Dirk has only been on E-7080 for a week and a half.  So far no nasty problems…lots of back pain, although don't know if it is from trial or the Xgeva shot for his bones. We go up to UCLA on Wed  5//25 for labwork.  

We probably live just a few miles from each other….we are near the corner of Alicia & Trabuco.  In the mornings, while my family sleeps in late, I go hang out at the Waterloo Station Coffee House on Los Alisos, between Jeronimo and Trabuco (in 24-Hr Ftness/Farmers Market center).  Free Wi Fi and the Coffee & Cheese Danish are great.  Just my small way to de-stress and start the day!  

Feel free to email me at [email protected].

Jan

Hey Dale,  Sorry to hear about your wife's nasty side effects.  Our regular Onc at UCLA is Dr. Chmielowski.  We got to see Dr. Ribas once while our Onc was on a trip.  He seems nice!  Dirk has only been on E-7080 for a week and a half.  So far no nasty problems…lots of back pain, although don't know if it is from trial or the Xgeva shot for his bones. We go up to UCLA on Wed  5//25 for labwork.  

We probably live just a few miles from each other….we are near the corner of Alicia & Trabuco.  In the mornings, while my family sleeps in late, I go hang out at the Waterloo Station Coffee House on Los Alisos, between Jeronimo and Trabuco (in 24-Hr Ftness/Farmers Market center).  Free Wi Fi and the Coffee & Cheese Danish are great.  Just my small way to de-stress and start the day!  

Feel free to email me at [email protected].

Jan