Columbus

Thank you all for your kind words.  I know so many people that have beat Stage 4 mel without such aggressive therapy.  How one knows which treatment path to take is just so unknown.  Choel did everything humanly possible.  Her diet and exercise regimen was flawless.  She was a very spiritual person and read voraciously.   She gave it her all.

Just to let you all know because information is key, Boots had received good news in late Feb, after a battery of scans, that the mets in liver and lungs were responding favorably with the zelboraf.  She was scheduled to go to Moffit to see Dr. Weber for a follow up th 1st week of Apr and to workout the next stage of treatment after zel would presumably stop working.  So, this was a great suprise to Boots too.  The airline tickets were in the top of the desk drawer.  I did FedEx them back to PALS so that another patient could use them.

Her brain met symptoms started with uncommon lethargy one day.  So tired Boots could barely move a muscle.  A day or two later she collapsed and was rushed to ER.  Xray confirmed 5 new brain mets.  They were inoperable and palliative radiation did not work.  She never made it back to Moffit.  Instead she endured a week in ICU and then we moved to Hospice.  She was paralysized and non ambulatory all within 3 days.  The tumors were growing at an unbelievable rate.  

From my reading, zelboraf crosses the blood-brain barrier.  I'm not sure why the liver mets responded but not the brain mets.  She was on a very low dose of zelboraf (less than half)  due to the many side effects she suffered so perhaps it wasn't enough for a positive clinical response.  All speculation on my part.  Last month Choel had a large squamous cell lesion removed from her nose…I guess another common side effect of zel.

We are numb.  It happened so quickly.  She was so young, talented and a very caring person.  Looking a her medical journal, Boots greatest fear is that it would move to her brain….and sadly it did.  

I know a few patients with brain mets and successfully treated by a new treatment….I'm drawing a blank on the acronym but TNS???  I think it was a stem cell based treatment….highly specialized.  If I recover the email a friend sent with on the clinical trial, I will post it here but I am guessing that you all know about that I refer.

Thank you again everyone for your continued love and outreach.

Amy

Thank you all for your kind words.  I know so many people that have beat Stage 4 mel without such aggressive therapy.  How one knows which treatment path to take is just so unknown.  Choel did everything humanly possible.  Her diet and exercise regimen was flawless.  She was a very spiritual person and read voraciously.   She gave it her all.

Just to let you all know because information is key, Boots had received good news in late Feb, after a battery of scans, that the mets in liver and lungs were responding favorably with the zelboraf.  She was scheduled to go to Moffit to see Dr. Weber for a follow up th 1st week of Apr and to workout the next stage of treatment after zel would presumably stop working.  So, this was a great suprise to Boots too.  The airline tickets were in the top of the desk drawer.  I did FedEx them back to PALS so that another patient could use them.

Her brain met symptoms started with uncommon lethargy one day.  So tired Boots could barely move a muscle.  A day or two later she collapsed and was rushed to ER.  Xray confirmed 5 new brain mets.  They were inoperable and palliative radiation did not work.  She never made it back to Moffit.  Instead she endured a week in ICU and then we moved to Hospice.  She was paralysized and non ambulatory all within 3 days.  The tumors were growing at an unbelievable rate.  

From my reading, zelboraf crosses the blood-brain barrier.  I'm not sure why the liver mets responded but not the brain mets.  She was on a very low dose of zelboraf (less than half)  due to the many side effects she suffered so perhaps it wasn't enough for a positive clinical response.  All speculation on my part.  Last month Choel had a large squamous cell lesion removed from her nose…I guess another common side effect of zel.

We are numb.  It happened so quickly.  She was so young, talented and a very caring person.  Looking a her medical journal, Boots greatest fear is that it would move to her brain….and sadly it did.  

I know a few patients with brain mets and successfully treated by a new treatment….I'm drawing a blank on the acronym but TNS???  I think it was a stem cell based treatment….highly specialized.  If I recover the email a friend sent with on the clinical trial, I will post it here but I am guessing that you all know about that I refer.

Thank you again everyone for your continued love and outreach.

Amy

Thank you all for your kind words.  I know so many people that have beat Stage 4 mel without such aggressive therapy.  How one knows which treatment path to take is just so unknown.  Choel did everything humanly possible.  Her diet and exercise regimen was flawless.  She was a very spiritual person and read voraciously.   She gave it her all.

Just to let you all know because information is key, Boots had received good news in late Feb, after a battery of scans, that the mets in liver and lungs were responding favorably with the zelboraf.  She was scheduled to go to Moffit to see Dr. Weber for a follow up th 1st week of Apr and to workout the next stage of treatment after zel would presumably stop working.  So, this was a great suprise to Boots too.  The airline tickets were in the top of the desk drawer.  I did FedEx them back to PALS so that another patient could use them.

Her brain met symptoms started with uncommon lethargy one day.  So tired Boots could barely move a muscle.  A day or two later she collapsed and was rushed to ER.  Xray confirmed 5 new brain mets.  They were inoperable and palliative radiation did not work.  She never made it back to Moffit.  Instead she endured a week in ICU and then we moved to Hospice.  She was paralysized and non ambulatory all within 3 days.  The tumors were growing at an unbelievable rate.  

From my reading, zelboraf crosses the blood-brain barrier.  I'm not sure why the liver mets responded but not the brain mets.  She was on a very low dose of zelboraf (less than half)  due to the many side effects she suffered so perhaps it wasn't enough for a positive clinical response.  All speculation on my part.  Last month Choel had a large squamous cell lesion removed from her nose…I guess another common side effect of zel.

We are numb.  It happened so quickly.  She was so young, talented and a very caring person.  Looking a her medical journal, Boots greatest fear is that it would move to her brain….and sadly it did.  

I know a few patients with brain mets and successfully treated by a new treatment….I'm drawing a blank on the acronym but TNS???  I think it was a stem cell based treatment….highly specialized.  If I recover the email a friend sent with on the clinical trial, I will post it here but I am guessing that you all know about that I refer.

Thank you again everyone for your continued love and outreach.

Amy