Josh from Kansas - Dx Sep 2012
Re: Josh from Kansas - Dx Sep 2012
What a great news! I'm sharing your happy now 
So is the biggest met 1.3cm now? Looks like Josh may receive CR soon
So is the biggest met 1.3cm now? Looks like Josh may receive CR soon
Re: Josh from Kansas - Dx Sep 2012
Thank you Lynette 
At what point have you and George made the determination to stop immune therapy if any?
My love
Debbie
At what point have you and George made the determination to stop immune therapy if any?
My love
Debbie
Debbie
Re: Josh from Kansas - Dx Sep 2012
Good morning all
Josh had his 15th infusion on Thursday and weighted in at a wapping 127.2 lbs!
His sleep patterns are still skewed but he is working on creating normal schedules with his day . Getting back to NORMAL is so challenging as you all can attest to today
Last year at this time we had been off sutent for 6 weeks after we had a " toxic" experience and discontinued after taking from end of September 2016 to November 24, 2016.
Josh was down to 95 pounds and was coughing pretty much night and day . He was suffering from
A) lack of Energy, drive
B) pain from broken rib after coughing fit while on sutinib
His over clinical physic had the doctors believing that he was possible succumbing to cachexia.
We explored having a stomach tube surgically installed so Josh could gain weight and consulted and incorporated a natural doctor and dietician into our care team .
Tumors were appearing in his lower cavity after the November discontinuation of sutent at an alarming rate .
( we all know that 1 can feel like an alarming rate .
)
-June 19 Opdivo --weight 105 ish
-Aug 2016-- brain tumors started to disappear
-October-- lung,lower pelvic / cavity tumors reduced , inflammation i.e. Larger image of liver shown
-Jan 2017--weight 124.2
Liver reduction as well as other lower cavity tumors being followed
All brain tumors gone except LITT 1cm tumor that got all practical purposes is dead
Feb 9 weight 127.2
I know and understand there have been others before us on trial monoclonal and immune therapies who've had these excellent results . Who've given there lives with dose escalating trials .
Our hearts and thanks needs to be said to these families .
That being said I also am being realistic in always being ahead of the game if at all possible in the event we need to change .
We as a family are so grateful for this extra year that has been given to us with Josh and look forward to many more!
Any suggestions are welcome
Love
Debbie
Josh had his 15th infusion on Thursday and weighted in at a wapping 127.2 lbs!
His sleep patterns are still skewed but he is working on creating normal schedules with his day . Getting back to NORMAL is so challenging as you all can attest to today
Last year at this time we had been off sutent for 6 weeks after we had a " toxic" experience and discontinued after taking from end of September 2016 to November 24, 2016.
Josh was down to 95 pounds and was coughing pretty much night and day . He was suffering from
A) lack of Energy, drive
B) pain from broken rib after coughing fit while on sutinib
His over clinical physic had the doctors believing that he was possible succumbing to cachexia.
We explored having a stomach tube surgically installed so Josh could gain weight and consulted and incorporated a natural doctor and dietician into our care team .
Tumors were appearing in his lower cavity after the November discontinuation of sutent at an alarming rate .
( we all know that 1 can feel like an alarming rate .
)-June 19 Opdivo --weight 105 ish
-Aug 2016-- brain tumors started to disappear
-October-- lung,lower pelvic / cavity tumors reduced , inflammation i.e. Larger image of liver shown
-Jan 2017--weight 124.2
Liver reduction as well as other lower cavity tumors being followed
All brain tumors gone except LITT 1cm tumor that got all practical purposes is dead
Feb 9 weight 127.2
I know and understand there have been others before us on trial monoclonal and immune therapies who've had these excellent results . Who've given there lives with dose escalating trials .
Our hearts and thanks needs to be said to these families .That being said I also am being realistic in always being ahead of the game if at all possible in the event we need to change .
We as a family are so grateful for this extra year that has been given to us with Josh and look forward to many more!
Any suggestions are welcome
Love
Debbie
Debbie