THANKS
THANK YOU MYOAK FOR YOUR WISE INFO AND YOUR KIND ENCOURAGEMENT. AND THANK YOU TO EVERYONE ELSE WHO RESPONDED TO MY POST.
RIGHT NOW, I HAVE SOME "SAFE" SPACE TO WORK WITH, LIKE MYOAK STATED, I'M BELOW THAT 18-24 MONTH MARK. SO FOR NOW I AM GOING TO STAY ON TY, NEXT WEEK WILL BE MY 14TH INFUSION.
TO ANSWER ONE QUESTION THAT WAS ASKED, NO, MY NUERO HAS NOT TAKEN ME OFF TY AT THIS POINT SINCE I'M STILL BELOW THE 18 MONTH MARK.
OVER THE PHONE LAST THURSDAY, MY NUERO'S SUGGESTION, WAS THAT WE CHANGE TY TO EVERY 8 WEEKS INSTEAD OF 4 WEEKS UNTIL LEMTRADA IS APPROVED.
HOWEVER I HAVE AN APPOINTMENT WITH HIM NEXT MONTH SO HE SAID WE WILL DISCUSS IT IN MORE DETAIL AT THAT TIME.
BEFORE WE KNEW MY NUMBER, BUT KNEW I WAS JCV+, HE SAID HE WOULD HONOR MY DECISION IF I DECIDED TO STAY ON TY. HE ALSO SAID THAT THE 4 YEAR MARK ON TY IS KIND OF THE HIGHEST PEAK FOR DEVELOPING PML, HE SAID THIS BECAUSE I BROUGHT UP A PATIENT WHO DEVELOPED PML WHO HAD BEEN ON TY FOR A LITTLE OVER 4 YEARS.
I TOOK HIS STATEMENT ABOUT THE 4 YEAR MARK TO MEAN THAT YOUR PROBABLY SAVER ON THE DRUG FOR A LITTLE LONGER THAN YOU THINK, ALTHOUGH THAT'S MY INTERPRETATION AND I KNOW HE WOULD NEVER TRY TO INFLUENCE ME ONE WAY OR THE OTHER. BUT I THINK HE DOES OPT ON THE SIDE THAT FOR THE BENEFIT THE ODDS ARE PRETTY LOW EVEN THOUGH HE DOESN'T COME OUT AND SAY THAT.
SO WHAT HIS RESPONSE WILL BE WITH AN ACTUAL NUMBER, I DON'T KNOW, OTHER THAN WHAT WE DISCUSSED ON THE PHONE.
THIS IS A VERY PERSONAL DECISION FOR ALL OF US AS WE RECEIVE OUR INDEX NUMBERS. NO ONES DECISION ABOUT THEIR THERAPY IS A WRONG DECISION. EITHER WAY, STAY ON TY OR TO DISCONTINUE TY, YOU ARE MAKING THE RIGHT DECISION FOR YOU AND YOUR SITUATION.
I THINK IF YOU DO YOUR RESEARCH, DISCUSS IT WITH THE PEOPLE WHO TRULY LOVE YOU, KNOW YOUR ODDS AND I THINK SOMETIMES YOU HAVE TO LISTEN TO YOUR GUT, THAT'S THE MOST YOU CAN DO TO MAKE THE MOST INFORMED DECISION.
THANKS TO ALL OF YOU WHO RESPONDED, YOU ALL HAVE TRULY BECOME LIKE FAMILY. SO MANY OF YOU, ESPECIALLY, MYOAK, I HAVE READ YOUR POST IN OTHER THREADS AND I HAVE HEEDED YOUR OPINIONS AND KNOWLEDGE EVEN THOUGH I MAY NOT HAVE RESPONDED TO THE POST.
I STILL DON'T KNOW WHAT MY ANSWER IS YET, I'M STUDYING MORE ABOUT LEMTRADA. BUT I'M LEANING TOWARD THE SUGGESTION OF MY NUERO.
THANKS YOU MY SWEET MS FAMILY!!!
THANK YOU MYOAK FOR YOUR WISE INFO AND YOUR KIND ENCOURAGEMENT. AND THANK YOU TO EVERYONE ELSE WHO RESPONDED TO MY POST.
RIGHT NOW, I HAVE SOME "SAFE" SPACE TO WORK WITH, LIKE MYOAK STATED, I'M BELOW THAT 18-24 MONTH MARK. SO FOR NOW I AM GOING TO STAY ON TY, NEXT WEEK WILL BE MY 14TH INFUSION.
TO ANSWER ONE QUESTION THAT WAS ASKED, NO, MY NUERO HAS NOT TAKEN ME OFF TY AT THIS POINT SINCE I'M STILL BELOW THE 18 MONTH MARK.
OVER THE PHONE LAST THURSDAY, MY NUERO'S SUGGESTION, WAS THAT WE CHANGE TY TO EVERY 8 WEEKS INSTEAD OF 4 WEEKS UNTIL LEMTRADA IS APPROVED.
HOWEVER I HAVE AN APPOINTMENT WITH HIM NEXT MONTH SO HE SAID WE WILL DISCUSS IT IN MORE DETAIL AT THAT TIME.
BEFORE WE KNEW MY NUMBER, BUT KNEW I WAS JCV+, HE SAID HE WOULD HONOR MY DECISION IF I DECIDED TO STAY ON TY. HE ALSO SAID THAT THE 4 YEAR MARK ON TY IS KIND OF THE HIGHEST PEAK FOR DEVELOPING PML, HE SAID THIS BECAUSE I BROUGHT UP A PATIENT WHO DEVELOPED PML WHO HAD BEEN ON TY FOR A LITTLE OVER 4 YEARS.
I TOOK HIS STATEMENT ABOUT THE 4 YEAR MARK TO MEAN THAT YOUR PROBABLY SAVER ON THE DRUG FOR A LITTLE LONGER THAN YOU THINK, ALTHOUGH THAT'S MY INTERPRETATION AND I KNOW HE WOULD NEVER TRY TO INFLUENCE ME ONE WAY OR THE OTHER. BUT I THINK HE DOES OPT ON THE SIDE THAT FOR THE BENEFIT THE ODDS ARE PRETTY LOW EVEN THOUGH HE DOESN'T COME OUT AND SAY THAT.
SO WHAT HIS RESPONSE WILL BE WITH AN ACTUAL NUMBER, I DON'T KNOW, OTHER THAN WHAT WE DISCUSSED ON THE PHONE.
THIS IS A VERY PERSONAL DECISION FOR ALL OF US AS WE RECEIVE OUR INDEX NUMBERS. NO ONES DECISION ABOUT THEIR THERAPY IS A WRONG DECISION. EITHER WAY, STAY ON TY OR TO DISCONTINUE TY, YOU ARE MAKING THE RIGHT DECISION FOR YOU AND YOUR SITUATION.
I THINK IF YOU DO YOUR RESEARCH, DISCUSS IT WITH THE PEOPLE WHO TRULY LOVE YOU, KNOW YOUR ODDS AND I THINK SOMETIMES YOU HAVE TO LISTEN TO YOUR GUT, THAT'S THE MOST YOU CAN DO TO MAKE THE MOST INFORMED DECISION.
THANKS TO ALL OF YOU WHO RESPONDED, YOU ALL HAVE TRULY BECOME LIKE FAMILY. SO MANY OF YOU, ESPECIALLY, MYOAK, I HAVE READ YOUR POST IN OTHER THREADS AND I HAVE HEEDED YOUR OPINIONS AND KNOWLEDGE EVEN THOUGH I MAY NOT HAVE RESPONDED TO THE POST.
I STILL DON'T KNOW WHAT MY ANSWER IS YET, I'M STUDYING MORE ABOUT LEMTRADA. BUT I'M LEANING TOWARD THE SUGGESTION OF MY NUERO.
THANKS YOU MY SWEET MS FAMILY!!!
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