Moving onto plan “C”. Off Zelboraf and onto Tafinlar.

Al – it’s always good to have a plan B! I had grand success with SRS for 2 mets in Nov. don’t be shy about asking for Ativan or something to get you through the mask fitting and the procedure. It’s unnerving (was to me, anyway) That’s what these drugs are made for. You will beat the beast!!

Amy

Al – it’s always good to have a plan B! I had grand success with SRS for 2 mets in Nov. don’t be shy about asking for Ativan or something to get you through the mask fitting and the procedure. It’s unnerving (was to me, anyway) That’s what these drugs are made for. You will beat the beast!!

Amy

Al – it’s always good to have a plan B! I had grand success with SRS for 2 mets in Nov. don’t be shy about asking for Ativan or something to get you through the mask fitting and the procedure. It’s unnerving (was to me, anyway) That’s what these drugs are made for. You will beat the beast!!

Amy

Al, two things:

1.  Consider requesting the Tafinlar-Mekinist combo.  Better stats and also supposed to help with side effects.  I've been on the combo for a month with very few side effects, all of which are manageable.

2.  I had a g-knife procedure for a small brain met.  They gave me a local anesthetic so I was actually asleep when they put on the head frame.  I woke up in the MRI when they were mapping (but I was very mellow at that point).  I agree with the prior post that meds are a good idea.  Otherwise, "no sweat".  Easier than a normal head MRI in my view!  I was groggy the day of the procedure and the following day with only a minor headache the day of.  I had the procedure on a Friday and was back to work on Monday.

Good luck!

Al, two things:

1.  Consider requesting the Tafinlar-Mekinist combo.  Better stats and also supposed to help with side effects.  I've been on the combo for a month with very few side effects, all of which are manageable.

2.  I had a g-knife procedure for a small brain met.  They gave me a local anesthetic so I was actually asleep when they put on the head frame.  I woke up in the MRI when they were mapping (but I was very mellow at that point).  I agree with the prior post that meds are a good idea.  Otherwise, "no sweat".  Easier than a normal head MRI in my view!  I was groggy the day of the procedure and the following day with only a minor headache the day of.  I had the procedure on a Friday and was back to work on Monday.

Good luck!

Al, two things:

1.  Consider requesting the Tafinlar-Mekinist combo.  Better stats and also supposed to help with side effects.  I've been on the combo for a month with very few side effects, all of which are manageable.

2.  I had a g-knife procedure for a small brain met.  They gave me a local anesthetic so I was actually asleep when they put on the head frame.  I woke up in the MRI when they were mapping (but I was very mellow at that point).  I agree with the prior post that meds are a good idea.  Otherwise, "no sweat".  Easier than a normal head MRI in my view!  I was groggy the day of the procedure and the following day with only a minor headache the day of.  I had the procedure on a Friday and was back to work on Monday.

Good luck!

Al – I truly wish you the best.  Be brave, I know you can do it.  I will pray for you, keep us informed!  Keep your PMA high and as you always say" Beat the Beast"!     

 

Rosa 

Al – I truly wish you the best.  Be brave, I know you can do it.  I will pray for you, keep us informed!  Keep your PMA high and as you always say" Beat the Beast"!     

 

Rosa 

Al – I truly wish you the best.  Be brave, I know you can do it.  I will pray for you, keep us informed!  Keep your PMA high and as you always say" Beat the Beast"!     

 

Rosa 

Hi Al,
You will do great, I know you will.
Do you know yet which hospital you will be at? Is it with Dr Kondziolka(sp?). He’s really such a nice man, but more importantly a highly skilled doctor.
As you know, I have been on the Trafilnar, and it has been like night and day. Just a tiny bit of achy knees, no sun sensitivity at all!
Please message me if you want…I’d love to speak with you.
You will absolutely beat the beast.

Prayers for you now.  You got this!

Prayers for you now.  You got this!

Prayers for you now.  You got this!

Praying for you Al!  Been on "Z" for 17 months (still on it) and had gamma knife at the end of June for a couple of mets, had follow up brain MRI early August – no new mets and the 2 they zapped were shrinking slightly.  Nothing has been said yet about stopping Z but have another mri early October along with PET/CT.

Once they get the frame on you for the gamma knife you are good to go, rest of it's a piece of cake!  Yes something to relax you a little bit is a good thing…  my guy offerred it but wanted to try to put it on without it first so my head wouldn't move as much.  He got in on in less than 10 minutes.. not a problem.  The "screws" that hold the frame on hurt for just a minute – it's actually the pressure that hurts – but then it stops and just doesn't hurt… very weird.

One tip is afterward sleep, lay propped up for a couple of days – check with the doc to confirm.  I missed that instruction from my doc and laid flat out to sleep.  Made my face/eyes swell way, way, way up!

You can beat the beast!

Praying for you Al!  Been on "Z" for 17 months (still on it) and had gamma knife at the end of June for a couple of mets, had follow up brain MRI early August – no new mets and the 2 they zapped were shrinking slightly.  Nothing has been said yet about stopping Z but have another mri early October along with PET/CT.

Once they get the frame on you for the gamma knife you are good to go, rest of it's a piece of cake!  Yes something to relax you a little bit is a good thing…  my guy offerred it but wanted to try to put it on without it first so my head wouldn't move as much.  He got in on in less than 10 minutes.. not a problem.  The "screws" that hold the frame on hurt for just a minute – it's actually the pressure that hurts – but then it stops and just doesn't hurt… very weird.

One tip is afterward sleep, lay propped up for a couple of days – check with the doc to confirm.  I missed that instruction from my doc and laid flat out to sleep.  Made my face/eyes swell way, way, way up!

You can beat the beast!

Praying for you Al!  Been on "Z" for 17 months (still on it) and had gamma knife at the end of June for a couple of mets, had follow up brain MRI early August – no new mets and the 2 they zapped were shrinking slightly.  Nothing has been said yet about stopping Z but have another mri early October along with PET/CT.

Once they get the frame on you for the gamma knife you are good to go, rest of it's a piece of cake!  Yes something to relax you a little bit is a good thing…  my guy offerred it but wanted to try to put it on without it first so my head wouldn't move as much.  He got in on in less than 10 minutes.. not a problem.  The "screws" that hold the frame on hurt for just a minute – it's actually the pressure that hurts – but then it stops and just doesn't hurt… very weird.

One tip is afterward sleep, lay propped up for a couple of days – check with the doc to confirm.  I missed that instruction from my doc and laid flat out to sleep.  Made my face/eyes swell way, way, way up!

You can beat the beast!

Hi Al,

First of all I"m sorry to hear about your "run" coming to end with Z.  I've been on T for a couple weeks now and the side effedts are less with it so that will be your up side.  

Secondly I have heard that T does break the brain barrier so that's another postitive.  

Thirdly I am confused, you say Gamma Knife then you say SRS.  I have had both and they are different procedures.  If you are getting SRS they fit you with a mesh mask over your face and the back of your head gets molded to a styrofoam thingy.  It's a little claustrophobic so an ativan ahead of time is nice and recommended.  Gamma knife your fitted to a frame which is bolted to your head through the skin to your skull.  You will get local injections to prevent the bolting procedure from actually hurting but you can feel the pressure.  I also recommend ativan for this procedure.  The worst part of it is when they take it off I had a horrible headache so come prepared with something for pain, I wish I knew this.  Overall I would say SRS is an easier process but gamma knife wasn't that bad.  

All my best to you Al, you can definately beat the beast!!  Keep up the PMA!!

Denise

Hi Al,

First of all I"m sorry to hear about your "run" coming to end with Z.  I've been on T for a couple weeks now and the side effedts are less with it so that will be your up side.  

Secondly I have heard that T does break the brain barrier so that's another postitive.  

Thirdly I am confused, you say Gamma Knife then you say SRS.  I have had both and they are different procedures.  If you are getting SRS they fit you with a mesh mask over your face and the back of your head gets molded to a styrofoam thingy.  It's a little claustrophobic so an ativan ahead of time is nice and recommended.  Gamma knife your fitted to a frame which is bolted to your head through the skin to your skull.  You will get local injections to prevent the bolting procedure from actually hurting but you can feel the pressure.  I also recommend ativan for this procedure.  The worst part of it is when they take it off I had a horrible headache so come prepared with something for pain, I wish I knew this.  Overall I would say SRS is an easier process but gamma knife wasn't that bad.  

All my best to you Al, you can definately beat the beast!!  Keep up the PMA!!

Denise

Hi Al,

First of all I"m sorry to hear about your "run" coming to end with Z.  I've been on T for a couple weeks now and the side effedts are less with it so that will be your up side.  

Secondly I have heard that T does break the brain barrier so that's another postitive.  

Thirdly I am confused, you say Gamma Knife then you say SRS.  I have had both and they are different procedures.  If you are getting SRS they fit you with a mesh mask over your face and the back of your head gets molded to a styrofoam thingy.  It's a little claustrophobic so an ativan ahead of time is nice and recommended.  Gamma knife your fitted to a frame which is bolted to your head through the skin to your skull.  You will get local injections to prevent the bolting procedure from actually hurting but you can feel the pressure.  I also recommend ativan for this procedure.  The worst part of it is when they take it off I had a horrible headache so come prepared with something for pain, I wish I knew this.  Overall I would say SRS is an easier process but gamma knife wasn't that bad.  

All my best to you Al, you can definately beat the beast!!  Keep up the PMA!!

Denise

Al,

I am sorry to hear this news, but so glad there is a good plan. Praying for you as you move on to plan C

Tina

Al,

I am sorry to hear this news, but so glad there is a good plan. Praying for you as you move on to plan C

Tina

Al,

I am sorry to hear this news, but so glad there is a good plan. Praying for you as you move on to plan C

Tina

Al,

So sorry to here about Zelboraf, I was getting used to you nipping at my heels.  That being said, good to read about your current plans and I hope it too gives you a long run.  On a separate subject, there is a Miles for Melanoma run/walk in New Jersey on September 22nd and NYU has a team.  If you are up to it and can attend, give me a shout so we can meet.

Al,

So sorry to here about Zelboraf, I was getting used to you nipping at my heels.  That being said, good to read about your current plans and I hope it too gives you a long run.  On a separate subject, there is a Miles for Melanoma run/walk in New Jersey on September 22nd and NYU has a team.  If you are up to it and can attend, give me a shout so we can meet.

Al,

So sorry to here about Zelboraf, I was getting used to you nipping at my heels.  That being said, good to read about your current plans and I hope it too gives you a long run.  On a separate subject, there is a Miles for Melanoma run/walk in New Jersey on September 22nd and NYU has a team.  If you are up to it and can attend, give me a shout so we can meet.

Hey Al!!! Been thinking of you! I am sure you have more recent post then this and hope it is good news! I will search for it…. in the meantime, not sure if you know Z ran its course with my husband back in Aug/Sept, he also had gamma in Aug on 5 tumors and hey have responded! He then did 2 ipi infusions in Sept/Oct, hut tumors too aggressive, so went to dabradenib/mek inhibitor in Nov. This seems to be working, but one tumor did grow and he just had another gamma last week on 4 tumors. So, now….. hopefully this works and combo still works, then go from there. Went to see melanoma specialist at Mayo back in Nov, he recommended getting mets under control and then adding ipi to combo…. his words “load him with ammo, he is high risk and combo will shrink quicker, but ipi will give him the miles” So, we’ll have to see what next few mos bring. 3/24/14 will be 2 yrs, a miracle!! Hope you are doing GREAT!!! PMA has been a little rough this winter, but managing.

Kelly 🙂

Hey Al!!! Been thinking of you! I am sure you have more recent post then this and hope it is good news! I will search for it…. in the meantime, not sure if you know Z ran its course with my husband back in Aug/Sept, he also had gamma in Aug on 5 tumors and hey have responded! He then did 2 ipi infusions in Sept/Oct, hut tumors too aggressive, so went to dabradenib/mek inhibitor in Nov. This seems to be working, but one tumor did grow and he just had another gamma last week on 4 tumors. So, now….. hopefully this works and combo still works, then go from there. Went to see melanoma specialist at Mayo back in Nov, he recommended getting mets under control and then adding ipi to combo…. his words “load him with ammo, he is high risk and combo will shrink quicker, but ipi will give him the miles” So, we’ll have to see what next few mos bring. 3/24/14 will be 2 yrs, a miracle!! Hope you are doing GREAT!!! PMA has been a little rough this winter, but managing.

Kelly 🙂

Hey Al!!! Been thinking of you! I am sure you have more recent post then this and hope it is good news! I will search for it…. in the meantime, not sure if you know Z ran its course with my husband back in Aug/Sept, he also had gamma in Aug on 5 tumors and hey have responded! He then did 2 ipi infusions in Sept/Oct, hut tumors too aggressive, so went to dabradenib/mek inhibitor in Nov. This seems to be working, but one tumor did grow and he just had another gamma last week on 4 tumors. So, now….. hopefully this works and combo still works, then go from there. Went to see melanoma specialist at Mayo back in Nov, he recommended getting mets under control and then adding ipi to combo…. his words “load him with ammo, he is high risk and combo will shrink quicker, but ipi will give him the miles” So, we’ll have to see what next few mos bring. 3/24/14 will be 2 yrs, a miracle!! Hope you are doing GREAT!!! PMA has been a little rough this winter, but managing.

Kelly 🙂

Hi Al,
You will do great, I know you will.
Do you know yet which hospital you will be at? Is it with Dr Kondziolka(sp?). He’s really such a nice man, but more importantly a highly skilled doctor.
As you know, I have been on the Trafilnar, and it has been like night and day. Just a tiny bit of achy knees, no sun sensitivity at all!
Please message me if you want…I’d love to speak with you.
You will absolutely beat the beast.

Hi Al,
You will do great, I know you will.
Do you know yet which hospital you will be at? Is it with Dr Kondziolka(sp?). He’s really such a nice man, but more importantly a highly skilled doctor.
As you know, I have been on the Trafilnar, and it has been like night and day. Just a tiny bit of achy knees, no sun sensitivity at all!
Please message me if you want…I’d love to speak with you.
You will absolutely beat the beast.

Hi Al,
I didn’t see your reply to this until now, so I’m hoping you will see this.
Knowing that Sandy washed away NYU’s Gamma Knife machines, I was wondering which hospital you would be using for your upcoming procedure.
My email is [email protected].
All the best,
Karen

Hi Al,
I didn’t see your reply to this until now, so I’m hoping you will see this.
Knowing that Sandy washed away NYU’s Gamma Knife machines, I was wondering which hospital you would be using for your upcoming procedure.
My email is [email protected].
All the best,
Karen

Hi Al,
I didn’t see your reply to this until now, so I’m hoping you will see this.
Knowing that Sandy washed away NYU’s Gamma Knife machines, I was wondering which hospital you would be using for your upcoming procedure.
My email is [email protected].
All the best,
Karen