WayneG

Thanks for asking!  This is such a great group of fighters and Nancy and I have learned so much here!

This is Wayne and it's been a roller coaster few months.  Started "Z" 18 months ago having been diagnosed as Stage IV and have had fantastic results.  It "evaporated" multiple tumors everywhere – lungs, chest, spine, etc.  Nothing showed up in the brain MRI last Jan either.

Regular trip to MDA early last June – PET still looked fantastic – but the brain MRI showed 2 mets.  2 weeks later gamma knife.  Not too bad.  Follow up brain MRI scan early August showed no new mets and the 2 treated ones stable or slightly smaller.

Last week, another PET scan – still fantastic.  Brain MRI, 2 stable mets, but 2 new "things" plus a slight hemmorage.  The scare was the met was acutally in a position that was putting cancer cells into the spinal fluid.  For those of you who have been there, not a pleasant thought for treatment options – one being 3 weeks in the hospital to let chemo drain into the fluid via a port in your head – but if that can work, then that's what we do.

Last Friday had spine MRI and Monday had lumbar puncture.  Spinal fluid clear praise the Lord and something that may or may not be something on the spine.  

Medical Oncologist switched me to dabrafenib and Temodar to get something into the brain area.  Started those last night.  Will have to see what side effects might have.  "Z" kicked me for about 4 months early on but then adjusted so may or may not be with the new regimine.  Know a lot of you are on that journey too.

Follow up brain MRI end of October and another spine MRI late November.

So that's it… very, very blessed and have had great results with Zelboraf, expect the same with dabrafenib and Temodar – we'll know for sure in 4 weeks!

Don't stop believin' as Steve Perry says!!  

Wayne

Thanks for asking!  This is such a great group of fighters and Nancy and I have learned so much here!

This is Wayne and it's been a roller coaster few months.  Started "Z" 18 months ago having been diagnosed as Stage IV and have had fantastic results.  It "evaporated" multiple tumors everywhere – lungs, chest, spine, etc.  Nothing showed up in the brain MRI last Jan either.

Regular trip to MDA early last June – PET still looked fantastic – but the brain MRI showed 2 mets.  2 weeks later gamma knife.  Not too bad.  Follow up brain MRI scan early August showed no new mets and the 2 treated ones stable or slightly smaller.

Last week, another PET scan – still fantastic.  Brain MRI, 2 stable mets, but 2 new "things" plus a slight hemmorage.  The scare was the met was acutally in a position that was putting cancer cells into the spinal fluid.  For those of you who have been there, not a pleasant thought for treatment options – one being 3 weeks in the hospital to let chemo drain into the fluid via a port in your head – but if that can work, then that's what we do.

Last Friday had spine MRI and Monday had lumbar puncture.  Spinal fluid clear praise the Lord and something that may or may not be something on the spine.  

Medical Oncologist switched me to dabrafenib and Temodar to get something into the brain area.  Started those last night.  Will have to see what side effects might have.  "Z" kicked me for about 4 months early on but then adjusted so may or may not be with the new regimine.  Know a lot of you are on that journey too.

Follow up brain MRI end of October and another spine MRI late November.

So that's it… very, very blessed and have had great results with Zelboraf, expect the same with dabrafenib and Temodar – we'll know for sure in 4 weeks!

Don't stop believin' as Steve Perry says!!  

Wayne

Thanks for asking!  This is such a great group of fighters and Nancy and I have learned so much here!

This is Wayne and it's been a roller coaster few months.  Started "Z" 18 months ago having been diagnosed as Stage IV and have had fantastic results.  It "evaporated" multiple tumors everywhere – lungs, chest, spine, etc.  Nothing showed up in the brain MRI last Jan either.

Regular trip to MDA early last June – PET still looked fantastic – but the brain MRI showed 2 mets.  2 weeks later gamma knife.  Not too bad.  Follow up brain MRI scan early August showed no new mets and the 2 treated ones stable or slightly smaller.

Last week, another PET scan – still fantastic.  Brain MRI, 2 stable mets, but 2 new "things" plus a slight hemmorage.  The scare was the met was acutally in a position that was putting cancer cells into the spinal fluid.  For those of you who have been there, not a pleasant thought for treatment options – one being 3 weeks in the hospital to let chemo drain into the fluid via a port in your head – but if that can work, then that's what we do.

Last Friday had spine MRI and Monday had lumbar puncture.  Spinal fluid clear praise the Lord and something that may or may not be something on the spine.  

Medical Oncologist switched me to dabrafenib and Temodar to get something into the brain area.  Started those last night.  Will have to see what side effects might have.  "Z" kicked me for about 4 months early on but then adjusted so may or may not be with the new regimine.  Know a lot of you are on that journey too.

Follow up brain MRI end of October and another spine MRI late November.

So that's it… very, very blessed and have had great results with Zelboraf, expect the same with dabrafenib and Temodar – we'll know for sure in 4 weeks!

Don't stop believin' as Steve Perry says!!  

Wayne

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!

Hey Kim,

Finishing up month 14 on full dose "Z".  Side affects started getting better around month 5.  Still have some – rash, foot swelling/pain, fatigue, hair thinning – but all are better and certainly manageable.  

Hang in there.

Wayne

Hey Kim,

Finishing up month 14 on full dose "Z".  Side affects started getting better around month 5.  Still have some – rash, foot swelling/pain, fatigue, hair thinning – but all are better and certainly manageable.  

Hang in there.

Wayne

Hey Kim,

Finishing up month 14 on full dose "Z".  Side affects started getting better around month 5.  Still have some – rash, foot swelling/pain, fatigue, hair thinning – but all are better and certainly manageable.  

Hang in there.

Wayne

Troubling I know, but you have the PMA to beat the beast!  Praying that the latest news is only a bump in your journey.

Not retired yet – another 2 years away – but we too are planning based on melanoma center access… 

Wayne

Troubling I know, but you have the PMA to beat the beast!  Praying that the latest news is only a bump in your journey.

Not retired yet – another 2 years away – but we too are planning based on melanoma center access… 

Wayne

Troubling I know, but you have the PMA to beat the beast!  Praying that the latest news is only a bump in your journey.

Not retired yet – another 2 years away – but we too are planning based on melanoma center access… 

Wayne