bad news–Gamma Knife experience needed

Karen,

i have not had gamma knife but just had to chime in to let you know that you are in my thoughts and prayers.  I've been following your posts and just had to "speak up".  One day at a time.

Stay Strong

King

Stage IV 7/05  Liver mets

Karen,

i have not had gamma knife but just had to chime in to let you know that you are in my thoughts and prayers.  I've been following your posts and just had to "speak up".  One day at a time.

Stay Strong

King

Stage IV 7/05  Liver mets

Karen,

i have not had gamma knife but just had to chime in to let you know that you are in my thoughts and prayers.  I've been following your posts and just had to "speak up".  One day at a time.

Stay Strong

King

Stage IV 7/05  Liver mets

Dex was suggested a couple of months ago when I had a little inflammation/headache but I declined it since it wasnt deemed medically necessary. I couldn’t drive for 3 months though, that was the hardest thing w 3 kids.

I know how you feel right now, it is purely devastating. There are many many brain met survivors on here. Gamma knife will zap those critters straight back to hell as my radiation oncologist says!! Never give up!!

Amy

Dex was suggested a couple of months ago when I had a little inflammation/headache but I declined it since it wasnt deemed medically necessary. I couldn’t drive for 3 months though, that was the hardest thing w 3 kids.

I know how you feel right now, it is purely devastating. There are many many brain met survivors on here. Gamma knife will zap those critters straight back to hell as my radiation oncologist says!! Never give up!!

Amy

Dex was suggested a couple of months ago when I had a little inflammation/headache but I declined it since it wasnt deemed medically necessary. I couldn’t drive for 3 months though, that was the hardest thing w 3 kids.

I know how you feel right now, it is purely devastating. There are many many brain met survivors on here. Gamma knife will zap those critters straight back to hell as my radiation oncologist says!! Never give up!!

Amy

Oh, Karen, what a bummer! I understand how frightened and disappointed you are. But as Amy says, all is not lost! This is just a bump in the road; you will get through this, you'll see.

Have any of your mets been tested for the BRAF mutation? If not, you might consult a neurosurgeon to see if they can do a stereotactic needle biopsy of a brain met before they do the radiation. Knowing your BRAF status will be very important in the future. You might also find out if any and all of the larger mets can be surgicallly removed. I know that brain surgery is a scarey thought, but I've heard that it is less stressful than you might imagine. And with surgery (crainiotomy) you know you got rid of the met; radiation is always wait-and-see.

I guess I'm saying that, while I am glad that you and your doctors are being quick to address the brain mets, don't go TOO fast. Take a little time to examine your options and make an informed decision before you rush into treatment. 

Oh, Karen, what a bummer! I understand how frightened and disappointed you are. But as Amy says, all is not lost! This is just a bump in the road; you will get through this, you'll see.

Have any of your mets been tested for the BRAF mutation? If not, you might consult a neurosurgeon to see if they can do a stereotactic needle biopsy of a brain met before they do the radiation. Knowing your BRAF status will be very important in the future. You might also find out if any and all of the larger mets can be surgicallly removed. I know that brain surgery is a scarey thought, but I've heard that it is less stressful than you might imagine. And with surgery (crainiotomy) you know you got rid of the met; radiation is always wait-and-see.

I guess I'm saying that, while I am glad that you and your doctors are being quick to address the brain mets, don't go TOO fast. Take a little time to examine your options and make an informed decision before you rush into treatment. 

Oh, Karen, what a bummer! I understand how frightened and disappointed you are. But as Amy says, all is not lost! This is just a bump in the road; you will get through this, you'll see.

Have any of your mets been tested for the BRAF mutation? If not, you might consult a neurosurgeon to see if they can do a stereotactic needle biopsy of a brain met before they do the radiation. Knowing your BRAF status will be very important in the future. You might also find out if any and all of the larger mets can be surgicallly removed. I know that brain surgery is a scarey thought, but I've heard that it is less stressful than you might imagine. And with surgery (crainiotomy) you know you got rid of the met; radiation is always wait-and-see.

I guess I'm saying that, while I am glad that you and your doctors are being quick to address the brain mets, don't go TOO fast. Take a little time to examine your options and make an informed decision before you rush into treatment. 

The gamma worked well at shrinking and controlling the five tumours treat pre Christmas, but zelboraf didn’t do the job for me in my brain or elsewhere unfortunately.

No probs whatsoever with the frame or fitting or the actual treatment which took about 2.5 hrs after plan setting. I lost a patch of hair a month after as the biggest tumour was near to the surface….it did start to grow back within a couple of months but now obvs all gone with the wbr

Good luck and sorry to hear your news.

Jenny

The gamma worked well at shrinking and controlling the five tumours treat pre Christmas, but zelboraf didn’t do the job for me in my brain or elsewhere unfortunately.

No probs whatsoever with the frame or fitting or the actual treatment which took about 2.5 hrs after plan setting. I lost a patch of hair a month after as the biggest tumour was near to the surface….it did start to grow back within a couple of months but now obvs all gone with the wbr

Good luck and sorry to hear your news.

Jenny

The gamma worked well at shrinking and controlling the five tumours treat pre Christmas, but zelboraf didn’t do the job for me in my brain or elsewhere unfortunately.

No probs whatsoever with the frame or fitting or the actual treatment which took about 2.5 hrs after plan setting. I lost a patch of hair a month after as the biggest tumour was near to the surface….it did start to grow back within a couple of months but now obvs all gone with the wbr

Good luck and sorry to hear your news.

Jenny

Sorry to hear you running into this setback, Karen. Sorry to see how many different directions you're being pulled right now, by all the conflicting priorities. 

My experience with GK was, the morning of the procedure, the surgeon attached a titanium frame to my head with 4 posts. They anesthetize the areas around where the posts would go. A little pressure when they tighten it securely and immovably but it felt fine afterwards. 

Then they stuck my whole head, frame and all into an MRI. That's the only MRI that was difficult for me to get comfortable, they had to redo some of it because I moved. That gives them the reference from the frame to the locations they want to shoot beams at. Because the frame is so secure, they can shoot very accurately and not have to shoot any 'extra' from this accuracy. 

Sorry to hear you running into this setback, Karen. Sorry to see how many different directions you're being pulled right now, by all the conflicting priorities. 

My experience with GK was, the morning of the procedure, the surgeon attached a titanium frame to my head with 4 posts. They anesthetize the areas around where the posts would go. A little pressure when they tighten it securely and immovably but it felt fine afterwards. 

Then they stuck my whole head, frame and all into an MRI. That's the only MRI that was difficult for me to get comfortable, they had to redo some of it because I moved. That gives them the reference from the frame to the locations they want to shoot beams at. Because the frame is so secure, they can shoot very accurately and not have to shoot any 'extra' from this accuracy. 

Sorry to hear you running into this setback, Karen. Sorry to see how many different directions you're being pulled right now, by all the conflicting priorities. 

My experience with GK was, the morning of the procedure, the surgeon attached a titanium frame to my head with 4 posts. They anesthetize the areas around where the posts would go. A little pressure when they tighten it securely and immovably but it felt fine afterwards. 

Then they stuck my whole head, frame and all into an MRI. That's the only MRI that was difficult for me to get comfortable, they had to redo some of it because I moved. That gives them the reference from the frame to the locations they want to shoot beams at. Because the frame is so secure, they can shoot very accurately and not have to shoot any 'extra' from this accuracy. 

Karen,

You are where I am at now.  I went in for SRS on one tumor, they found out after the MRI to isolate it that I actually have 7. My hope was to get into an Anti PD 1 trial too but now we will have to wait for stable MRI's of 8 weeks.  Someone told me they are in the Merck trial and they only wanted 4 weeks stable.  The machine they used last week on me could only isolate to 5mm or larger so they only zapped 2.  I"m going to San Francisco for the other to be zapped by a specialist.  By the time I get my MRI after that I'm hoping I'll be stable.  If they use the mask on you and your claustrophobic it's not very fun.  It's like a mesh mask that your fitted with and they snap it to a foam form that your also fitted to for the back of your head.  I had to take an Atavan before the procedures.  They zapped mine for 5 days.  My specialist said that's not SRS, but that;s what I was told was done.  I guess in San Fran they zap them once.  Fatigue has been the worst side effect but not nearly as bad as WBR.  Other than that it's a breeze.

I'm hoping we can stay stable for the amount of time required to get into our trials.  I"ll be thinking about you so keep us posted.

All my best to you Karen,

Denise

Karen,

You are where I am at now.  I went in for SRS on one tumor, they found out after the MRI to isolate it that I actually have 7. My hope was to get into an Anti PD 1 trial too but now we will have to wait for stable MRI's of 8 weeks.  Someone told me they are in the Merck trial and they only wanted 4 weeks stable.  The machine they used last week on me could only isolate to 5mm or larger so they only zapped 2.  I"m going to San Francisco for the other to be zapped by a specialist.  By the time I get my MRI after that I'm hoping I'll be stable.  If they use the mask on you and your claustrophobic it's not very fun.  It's like a mesh mask that your fitted with and they snap it to a foam form that your also fitted to for the back of your head.  I had to take an Atavan before the procedures.  They zapped mine for 5 days.  My specialist said that's not SRS, but that;s what I was told was done.  I guess in San Fran they zap them once.  Fatigue has been the worst side effect but not nearly as bad as WBR.  Other than that it's a breeze.

I'm hoping we can stay stable for the amount of time required to get into our trials.  I"ll be thinking about you so keep us posted.

All my best to you Karen,

Denise

Karen,

You are where I am at now.  I went in for SRS on one tumor, they found out after the MRI to isolate it that I actually have 7. My hope was to get into an Anti PD 1 trial too but now we will have to wait for stable MRI's of 8 weeks.  Someone told me they are in the Merck trial and they only wanted 4 weeks stable.  The machine they used last week on me could only isolate to 5mm or larger so they only zapped 2.  I"m going to San Francisco for the other to be zapped by a specialist.  By the time I get my MRI after that I'm hoping I'll be stable.  If they use the mask on you and your claustrophobic it's not very fun.  It's like a mesh mask that your fitted with and they snap it to a foam form that your also fitted to for the back of your head.  I had to take an Atavan before the procedures.  They zapped mine for 5 days.  My specialist said that's not SRS, but that;s what I was told was done.  I guess in San Fran they zap them once.  Fatigue has been the worst side effect but not nearly as bad as WBR.  Other than that it's a breeze.

I'm hoping we can stay stable for the amount of time required to get into our trials.  I"ll be thinking about you so keep us posted.

All my best to you Karen,

Denise

Hi Karen,

My first brain met was discovered last June.  Gamma Knife didn't work well for me and I had a craniotomy in November to remove the met.   However, from what I read on the board many people do benefit from the procedure.  Good luck to you.  Hang in there; treatments continue to improve.

Brendan

Hi Karen,

My first brain met was discovered last June.  Gamma Knife didn't work well for me and I had a craniotomy in November to remove the met.   However, from what I read on the board many people do benefit from the procedure.  Good luck to you.  Hang in there; treatments continue to improve.

Brendan

Hi Karen,

My first brain met was discovered last June.  Gamma Knife didn't work well for me and I had a craniotomy in November to remove the met.   However, from what I read on the board many people do benefit from the procedure.  Good luck to you.  Hang in there; treatments continue to improve.

Brendan

Dear Karen,

I am so sorry to hear about your brain mets. Until now we do not have any experience with Gamma Knife, just want to let you know that my thaughts are with you. Good to hear, that your husband is with him. Keep on fighting, you will beat this awful beast!

All the best, Jenny

Dear Karen,

I am so sorry to hear about your brain mets. Until now we do not have any experience with Gamma Knife, just want to let you know that my thaughts are with you. Good to hear, that your husband is with him. Keep on fighting, you will beat this awful beast!

All the best, Jenny

Dear Karen,

I am so sorry to hear about your brain mets. Until now we do not have any experience with Gamma Knife, just want to let you know that my thaughts are with you. Good to hear, that your husband is with him. Keep on fighting, you will beat this awful beast!

All the best, Jenny

Karen, I have been following your posts, but my husband's 'Surface' would not let me post responses. I am so sorry for all of the new challenges you are facing in your treatment. It sounds like you are on a good track, though, to see this specialist.. get those mets taken care of and then proceed from there. I am sure this is all scary and discouraging. Keep your head up, though, you have already come through a lot and there is a road through all of this, as well. One day at a time. One moment at a time.

Tina

Karen, I have been following your posts, but my husband's 'Surface' would not let me post responses. I am so sorry for all of the new challenges you are facing in your treatment. It sounds like you are on a good track, though, to see this specialist.. get those mets taken care of and then proceed from there. I am sure this is all scary and discouraging. Keep your head up, though, you have already come through a lot and there is a road through all of this, as well. One day at a time. One moment at a time.

Tina

Karen, I have been following your posts, but my husband's 'Surface' would not let me post responses. I am so sorry for all of the new challenges you are facing in your treatment. It sounds like you are on a good track, though, to see this specialist.. get those mets taken care of and then proceed from there. I am sure this is all scary and discouraging. Keep your head up, though, you have already come through a lot and there is a road through all of this, as well. One day at a time. One moment at a time.

Tina