Marilynn Eiken

Denise,

Thank you for your reply!  I pray your treatments with the brain mets goes very well!  Best of luck!

Marilynn

Denise,

Thank you for your reply!  I pray your treatments with the brain mets goes very well!  Best of luck!

Marilynn

Denise,

Thank you for your reply!  I pray your treatments with the brain mets goes very well!  Best of luck!

Marilynn

Thanks Swanee!

He's a private, quiet kind of man so he may not email you back in length but he has a beautiful heart and will appreciate the connection of someone who can relate to his situation.  Thank you soo much!

Marilynn

Thanks Swanee!

He's a private, quiet kind of man so he may not email you back in length but he has a beautiful heart and will appreciate the connection of someone who can relate to his situation.  Thank you soo much!

Marilynn

Thanks Swanee!

He's a private, quiet kind of man so he may not email you back in length but he has a beautiful heart and will appreciate the connection of someone who can relate to his situation.  Thank you soo much!

Marilynn

LynnLuc-  I feel I am going to need your help.  I actually WORK for Mayo as an RN and feel I have had to advocate very strongly for Tye.  He wouldnt even have got started on Leukine if I hadn't kept pushing and asking questions.  His neurosurgeon is a fantastic doc though and he gives me hope and I like his attitude.  It seems my husbands disease is  most progressive in his brain without much systemic involvement.  Its like the med oncs dont know how to deal with brain mets by itself.  I'm not sure how many trials, if any, Tye will qualify for.  It seems brain mets is a frequent disqualifying factor.  Was mayo good about giving you the records you needed to delve into a trial elsewhere?  Where are you from?   We are in SE MN very close to the border of Iowa.  Did insurance help with any of the trial stuff?  How do you manage being involved in a trial so far away from home?  I'm going back to work tomorrow so that i don't use up all my PTO if we have to travel elsewhere for treatement.  I am very willing to see Tye try the ipi.  I know it doesn't work for everyone but I heard some chatter about exclusion criteria for PD1 being you had to have tried ipi first.  How is the PD1 different than ipi in your opinion?  HOw long can you be on it?  When did you start the trial?  Dr Markovic is supposed to be the "melanoma guru" of Mayo but he is not our doctor (although he is available as consult to our primary).  Who did you end up finding as a conprehensive melanoma specialist?  If you prefer you can email me directly at [email protected].  I would really appreiate your input.

Thank you for your reply.   You may be just what I need as I have always been ready to "fire" anybody not willing to fight  for my husband's life.  I advocate for the rights of patients that I don't know and may never see again.  I will be a force to be reckoned with for Tye.  The needs of the patient come first.  Mayo model…..I live it, serve it, breathe it.  I'll do everything I can for Tye.  Thanks again!

Marilynn

LynnLuc-  I feel I am going to need your help.  I actually WORK for Mayo as an RN and feel I have had to advocate very strongly for Tye.  He wouldnt even have got started on Leukine if I hadn't kept pushing and asking questions.  His neurosurgeon is a fantastic doc though and he gives me hope and I like his attitude.  It seems my husbands disease is  most progressive in his brain without much systemic involvement.  Its like the med oncs dont know how to deal with brain mets by itself.  I'm not sure how many trials, if any, Tye will qualify for.  It seems brain mets is a frequent disqualifying factor.  Was mayo good about giving you the records you needed to delve into a trial elsewhere?  Where are you from?   We are in SE MN very close to the border of Iowa.  Did insurance help with any of the trial stuff?  How do you manage being involved in a trial so far away from home?  I'm going back to work tomorrow so that i don't use up all my PTO if we have to travel elsewhere for treatement.  I am very willing to see Tye try the ipi.  I know it doesn't work for everyone but I heard some chatter about exclusion criteria for PD1 being you had to have tried ipi first.  How is the PD1 different than ipi in your opinion?  HOw long can you be on it?  When did you start the trial?  Dr Markovic is supposed to be the "melanoma guru" of Mayo but he is not our doctor (although he is available as consult to our primary).  Who did you end up finding as a conprehensive melanoma specialist?  If you prefer you can email me directly at [email protected].  I would really appreiate your input.

Thank you for your reply.   You may be just what I need as I have always been ready to "fire" anybody not willing to fight  for my husband's life.  I advocate for the rights of patients that I don't know and may never see again.  I will be a force to be reckoned with for Tye.  The needs of the patient come first.  Mayo model…..I live it, serve it, breathe it.  I'll do everything I can for Tye.  Thanks again!

Marilynn

LynnLuc-  I feel I am going to need your help.  I actually WORK for Mayo as an RN and feel I have had to advocate very strongly for Tye.  He wouldnt even have got started on Leukine if I hadn't kept pushing and asking questions.  His neurosurgeon is a fantastic doc though and he gives me hope and I like his attitude.  It seems my husbands disease is  most progressive in his brain without much systemic involvement.  Its like the med oncs dont know how to deal with brain mets by itself.  I'm not sure how many trials, if any, Tye will qualify for.  It seems brain mets is a frequent disqualifying factor.  Was mayo good about giving you the records you needed to delve into a trial elsewhere?  Where are you from?   We are in SE MN very close to the border of Iowa.  Did insurance help with any of the trial stuff?  How do you manage being involved in a trial so far away from home?  I'm going back to work tomorrow so that i don't use up all my PTO if we have to travel elsewhere for treatement.  I am very willing to see Tye try the ipi.  I know it doesn't work for everyone but I heard some chatter about exclusion criteria for PD1 being you had to have tried ipi first.  How is the PD1 different than ipi in your opinion?  HOw long can you be on it?  When did you start the trial?  Dr Markovic is supposed to be the "melanoma guru" of Mayo but he is not our doctor (although he is available as consult to our primary).  Who did you end up finding as a conprehensive melanoma specialist?  If you prefer you can email me directly at [email protected].  I would really appreiate your input.

Thank you for your reply.   You may be just what I need as I have always been ready to "fire" anybody not willing to fight  for my husband's life.  I advocate for the rights of patients that I don't know and may never see again.  I will be a force to be reckoned with for Tye.  The needs of the patient come first.  Mayo model…..I live it, serve it, breathe it.  I'll do everything I can for Tye.  Thanks again!

Marilynn

Tye does have a BRAF mutation.  The issue had been that he had no systemic involvement and only brain mets.  I kept pushing last summer about how it bothered me that we werent doing anything proactive.  Our med onc is the "newest member" of the melanoma team at Mayo.  He consulted his superiors and thats how we got started on the leukine.  The liver tumor came along and was very small and treated with radio ablation.  It was felt since that tumor got treated it was most appropriate to continue with leukine.  One month later his MRI showed continued growth at the resected tumor bed in his right temporal lobe. They had been watching it and it all coinsided with radiation side effects.  Thought it was necrosis all along but low and behold……melanoma regrowth.  I know I need to do some more clinical trial investigating.  It doesnt look like he will qualify for any of the ones currently at Mayo.  I plan to start looking for anything he can qualify while we determine our next step.  The 16th of this month we repeat the pet scan and discuss ipi.  It's my neuro surgeon that is pushing for the treatment and I'm quite grateful.  We will go from there.  We have a son that will be graduating from BMT in the Air Force on Jan 25th so we are going to go to that and celebrate his accomplishment and then tackle this damnable disease once again.  Thank you for your responses.  Sometimes I feel very stuck in my own head with little outlet.  MPIP is a godsend for me.  I often dont write alot but I read and find great comfort in all the amazing people on here.  Patients and  caregivers.  We are in this together.  Bless you all!

Marilynn

Tye does have a BRAF mutation.  The issue had been that he had no systemic involvement and only brain mets.  I kept pushing last summer about how it bothered me that we werent doing anything proactive.  Our med onc is the "newest member" of the melanoma team at Mayo.  He consulted his superiors and thats how we got started on the leukine.  The liver tumor came along and was very small and treated with radio ablation.  It was felt since that tumor got treated it was most appropriate to continue with leukine.  One month later his MRI showed continued growth at the resected tumor bed in his right temporal lobe. They had been watching it and it all coinsided with radiation side effects.  Thought it was necrosis all along but low and behold……melanoma regrowth.  I know I need to do some more clinical trial investigating.  It doesnt look like he will qualify for any of the ones currently at Mayo.  I plan to start looking for anything he can qualify while we determine our next step.  The 16th of this month we repeat the pet scan and discuss ipi.  It's my neuro surgeon that is pushing for the treatment and I'm quite grateful.  We will go from there.  We have a son that will be graduating from BMT in the Air Force on Jan 25th so we are going to go to that and celebrate his accomplishment and then tackle this damnable disease once again.  Thank you for your responses.  Sometimes I feel very stuck in my own head with little outlet.  MPIP is a godsend for me.  I often dont write alot but I read and find great comfort in all the amazing people on here.  Patients and  caregivers.  We are in this together.  Bless you all!

Marilynn

Tye does have a BRAF mutation.  The issue had been that he had no systemic involvement and only brain mets.  I kept pushing last summer about how it bothered me that we werent doing anything proactive.  Our med onc is the "newest member" of the melanoma team at Mayo.  He consulted his superiors and thats how we got started on the leukine.  The liver tumor came along and was very small and treated with radio ablation.  It was felt since that tumor got treated it was most appropriate to continue with leukine.  One month later his MRI showed continued growth at the resected tumor bed in his right temporal lobe. They had been watching it and it all coinsided with radiation side effects.  Thought it was necrosis all along but low and behold……melanoma regrowth.  I know I need to do some more clinical trial investigating.  It doesnt look like he will qualify for any of the ones currently at Mayo.  I plan to start looking for anything he can qualify while we determine our next step.  The 16th of this month we repeat the pet scan and discuss ipi.  It's my neuro surgeon that is pushing for the treatment and I'm quite grateful.  We will go from there.  We have a son that will be graduating from BMT in the Air Force on Jan 25th so we are going to go to that and celebrate his accomplishment and then tackle this damnable disease once again.  Thank you for your responses.  Sometimes I feel very stuck in my own head with little outlet.  MPIP is a godsend for me.  I often dont write alot but I read and find great comfort in all the amazing people on here.  Patients and  caregivers.  We are in this together.  Bless you all!

Marilynn