lyndaloo

Hello – I have been wondering the same thing, she is a fellow Canadian.  I sure hope she is OK.  Been praying and thinking about her.

Lyndaloo

Hello – I have been wondering the same thing, she is a fellow Canadian.  I sure hope she is OK.  Been praying and thinking about her.

Lyndaloo

Hello – I have been wondering the same thing, she is a fellow Canadian.  I sure hope she is OK.  Been praying and thinking about her.

Lyndaloo

Thank you for sharing, I love hearing stories like yours.  I wish all people fighting this disease NED!!  God Bless you.

Lyndaloo

Thank you for sharing, I love hearing stories like yours.  I wish all people fighting this disease NED!!  God Bless you.

Lyndaloo

Thank you for sharing, I love hearing stories like yours.  I wish all people fighting this disease NED!!  God Bless you.

Lyndaloo

Hi LIsa – my husband had ipi after tomotherapy to the brain which is similar to gama knife. Beginning his ipi treatnent he was showing a bit of edema but not enough to stop him from getting ipi.  After his third round of ipi he was getting numbness, fuzzy vision and headaches.  They did an emerg mri and cat scan to find out the edema had gone crazy, they are calling this a very rare side effect, but I feel that since he had some edema to start with the ipi caused inflammation, thus flared up the edema.  After getting on steroids he was able to get his last round of ipi and is now gradually weaning off the steroids. All the numbness and headaches have gone and eyesight is much better.  Tomorrow we go for his 16 week scan to find out the ipi results  (he had a scan mid way through during this and it showed the ipi was shrinking the tumors dramatically, it also showed the brain tumors to be inactive at that time as well).  We are hoping and praying for good scan results.  He is feeling great now and his body is adjusting to the weaning process, now at 8 mg a day from 16 mg. We are located in London Ontario and are keeping a close eye on the anti pd1 trial starting up in Toronto soon.  I hope this second round of ipi kicks in for you once and for alll.

Sincerely,

Lyndaloo

Hi LIsa – my husband had ipi after tomotherapy to the brain which is similar to gama knife. Beginning his ipi treatnent he was showing a bit of edema but not enough to stop him from getting ipi.  After his third round of ipi he was getting numbness, fuzzy vision and headaches.  They did an emerg mri and cat scan to find out the edema had gone crazy, they are calling this a very rare side effect, but I feel that since he had some edema to start with the ipi caused inflammation, thus flared up the edema.  After getting on steroids he was able to get his last round of ipi and is now gradually weaning off the steroids. All the numbness and headaches have gone and eyesight is much better.  Tomorrow we go for his 16 week scan to find out the ipi results  (he had a scan mid way through during this and it showed the ipi was shrinking the tumors dramatically, it also showed the brain tumors to be inactive at that time as well).  We are hoping and praying for good scan results.  He is feeling great now and his body is adjusting to the weaning process, now at 8 mg a day from 16 mg. We are located in London Ontario and are keeping a close eye on the anti pd1 trial starting up in Toronto soon.  I hope this second round of ipi kicks in for you once and for alll.

Sincerely,

Lyndaloo

Hi LIsa – my husband had ipi after tomotherapy to the brain which is similar to gama knife. Beginning his ipi treatnent he was showing a bit of edema but not enough to stop him from getting ipi.  After his third round of ipi he was getting numbness, fuzzy vision and headaches.  They did an emerg mri and cat scan to find out the edema had gone crazy, they are calling this a very rare side effect, but I feel that since he had some edema to start with the ipi caused inflammation, thus flared up the edema.  After getting on steroids he was able to get his last round of ipi and is now gradually weaning off the steroids. All the numbness and headaches have gone and eyesight is much better.  Tomorrow we go for his 16 week scan to find out the ipi results  (he had a scan mid way through during this and it showed the ipi was shrinking the tumors dramatically, it also showed the brain tumors to be inactive at that time as well).  We are hoping and praying for good scan results.  He is feeling great now and his body is adjusting to the weaning process, now at 8 mg a day from 16 mg. We are located in London Ontario and are keeping a close eye on the anti pd1 trial starting up in Toronto soon.  I hope this second round of ipi kicks in for you once and for alll.

Sincerely,

Lyndaloo

Thank you Lisa, my prayers are for you as well.  I hope you are faring well with the ipi re-induction.  Are you getting ipi the same way as before, once every 3 weeks for four treatments?

Lyndaloo 

Thank you Lisa, my prayers are for you as well.  I hope you are faring well with the ipi re-induction.  Are you getting ipi the same way as before, once every 3 weeks for four treatments?

Lyndaloo 

Thank you Lisa, my prayers are for you as well.  I hope you are faring well with the ipi re-induction.  Are you getting ipi the same way as before, once every 3 weeks for four treatments?

Lyndaloo