› Forums › General Melanoma Community › Brain mets – too many to count
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sister of patient.
- Post
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- May 17, 2016 at 6:34 pm
Just a quick update on my sister. She had a brain MRI Friday morning and onc called last night confirming what was suspected (I suspected anyway) – brain tumours, big and small but too many to even count, several of the larger ones are bleeding.
I posted last week about her sudden development of severe tinnitus and so aready knew that brain mets are often a likely cause. She sees a radiologist first thing tomorrow morning and we already know that gamma knife is what they're going to try. Treatment will now be interrupted (ipi-nivo) but, again, we knew that would happen too.
What I'm reiterating here is that it's the excellent information I find on this board and the sharing of outcomes that makes me not so afraid of the future for her. Because this board exists and because people selflessly let others know what's happening, we know what we can expect with disease progression, treatments and outcomes. I have alot of hope for her and I will continue to do so!!
Best to all,
Barb
- Replies
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- May 17, 2016 at 6:55 pm
Barb, I hope Patina will post soon on here and tell you about her Mom's experience with brain mets. You may have seen her posts before, if not, search for them on here. She's done very well with multiple brain mets. I hope your sister does too.
Best of health to you and your sister,
Maggie
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- May 17, 2016 at 7:41 pm
Oh Maggie – so sweet of you with what you are currently dealing with!! Thank you sincerely for all good thoughts! I especially feel your anguish with seeing your mother deal with your brother's loss on top of your own battle.
We went through something similar last year when my sister was first diagnosed – seeing what it did to our Mom, her worry >> it was so hard!! And then, not long after my sister recovered from first round, our mother was diagnosed as well (type of cancer was never confirmed – of course we wonder now if it was mel). My sister and I together took care of our mom and lost her on Sept. 10. Since my sister's recurrence in Dec., we've said about a thousand times, "thank god Mom is not here to see this."
You know – I could never call myself religious but I do believe that we are spiritual beings first and foremost and so I talk out loud to my parents all the time. I ask them to help my sister as much as possible and I tell them I know they are still with us – helping us through this. I may not "see" them but there's no mistaking I feel their presence!! I do bellieve that your brother and your father are together and that they will be there for you too!!
I did read Patina's post just last week – with huge joy!! The sharing of all news – the good and the bad – is so vital!!! We are, for sure, not alone!!
Again, my heartfelt best thoughts go out to you and your family!!
Barb
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- May 18, 2016 at 7:46 pm
Barb, your compassion is so very touching. I also am not particularly religious but I do believe there is something more to this life or the next than meets the eye. The night of my brother's death, my Mom and sisters and I were sitting around the kitchen table when suddenly the lights flickered out and back on. Probably a brown-out, but we couldn't help think that maybe my brother was saying goodbye. I shared my Mom's bed that night and when I opened my eyes in the morning, her reading light flickered on for a brief second (it wasn't turned on). Well, if that was my brother, I'm not sure what sort of message he was trying to get across. Maybe that we have faulty wiring (ha). I just hope he's ok wherever he is.
This is such a brutal battle for all of us. I welcome stories of joy like Patina's Mom and I hope that you can soon share a similar story about your sister with us. There is always hope. You never know when things might turn around.
Best of health to you and yours,
Maggie
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- May 18, 2016 at 7:46 pm
Barb, your compassion is so very touching. I also am not particularly religious but I do believe there is something more to this life or the next than meets the eye. The night of my brother's death, my Mom and sisters and I were sitting around the kitchen table when suddenly the lights flickered out and back on. Probably a brown-out, but we couldn't help think that maybe my brother was saying goodbye. I shared my Mom's bed that night and when I opened my eyes in the morning, her reading light flickered on for a brief second (it wasn't turned on). Well, if that was my brother, I'm not sure what sort of message he was trying to get across. Maybe that we have faulty wiring (ha). I just hope he's ok wherever he is.
This is such a brutal battle for all of us. I welcome stories of joy like Patina's Mom and I hope that you can soon share a similar story about your sister with us. There is always hope. You never know when things might turn around.
Best of health to you and yours,
Maggie
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- May 18, 2016 at 7:46 pm
Barb, your compassion is so very touching. I also am not particularly religious but I do believe there is something more to this life or the next than meets the eye. The night of my brother's death, my Mom and sisters and I were sitting around the kitchen table when suddenly the lights flickered out and back on. Probably a brown-out, but we couldn't help think that maybe my brother was saying goodbye. I shared my Mom's bed that night and when I opened my eyes in the morning, her reading light flickered on for a brief second (it wasn't turned on). Well, if that was my brother, I'm not sure what sort of message he was trying to get across. Maybe that we have faulty wiring (ha). I just hope he's ok wherever he is.
This is such a brutal battle for all of us. I welcome stories of joy like Patina's Mom and I hope that you can soon share a similar story about your sister with us. There is always hope. You never know when things might turn around.
Best of health to you and yours,
Maggie
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- May 17, 2016 at 7:41 pm
Oh Maggie – so sweet of you with what you are currently dealing with!! Thank you sincerely for all good thoughts! I especially feel your anguish with seeing your mother deal with your brother's loss on top of your own battle.
We went through something similar last year when my sister was first diagnosed – seeing what it did to our Mom, her worry >> it was so hard!! And then, not long after my sister recovered from first round, our mother was diagnosed as well (type of cancer was never confirmed – of course we wonder now if it was mel). My sister and I together took care of our mom and lost her on Sept. 10. Since my sister's recurrence in Dec., we've said about a thousand times, "thank god Mom is not here to see this."
You know – I could never call myself religious but I do believe that we are spiritual beings first and foremost and so I talk out loud to my parents all the time. I ask them to help my sister as much as possible and I tell them I know they are still with us – helping us through this. I may not "see" them but there's no mistaking I feel their presence!! I do bellieve that your brother and your father are together and that they will be there for you too!!
I did read Patina's post just last week – with huge joy!! The sharing of all news – the good and the bad – is so vital!!! We are, for sure, not alone!!
Again, my heartfelt best thoughts go out to you and your family!!
Barb
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- May 17, 2016 at 7:41 pm
Oh Maggie – so sweet of you with what you are currently dealing with!! Thank you sincerely for all good thoughts! I especially feel your anguish with seeing your mother deal with your brother's loss on top of your own battle.
We went through something similar last year when my sister was first diagnosed – seeing what it did to our Mom, her worry >> it was so hard!! And then, not long after my sister recovered from first round, our mother was diagnosed as well (type of cancer was never confirmed – of course we wonder now if it was mel). My sister and I together took care of our mom and lost her on Sept. 10. Since my sister's recurrence in Dec., we've said about a thousand times, "thank god Mom is not here to see this."
You know – I could never call myself religious but I do believe that we are spiritual beings first and foremost and so I talk out loud to my parents all the time. I ask them to help my sister as much as possible and I tell them I know they are still with us – helping us through this. I may not "see" them but there's no mistaking I feel their presence!! I do bellieve that your brother and your father are together and that they will be there for you too!!
I did read Patina's post just last week – with huge joy!! The sharing of all news – the good and the bad – is so vital!!! We are, for sure, not alone!!
Again, my heartfelt best thoughts go out to you and your family!!
Barb
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- May 17, 2016 at 6:55 pm
Barb, I hope Patina will post soon on here and tell you about her Mom's experience with brain mets. You may have seen her posts before, if not, search for them on here. She's done very well with multiple brain mets. I hope your sister does too.
Best of health to you and your sister,
Maggie
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- May 17, 2016 at 6:55 pm
Barb, I hope Patina will post soon on here and tell you about her Mom's experience with brain mets. You may have seen her posts before, if not, search for them on here. She's done very well with multiple brain mets. I hope your sister does too.
Best of health to you and your sister,
Maggie
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- May 17, 2016 at 9:42 pm
Hi!Please read my Mom’s story. She has had 28 brain mets and they can only find 1 now… She has been on Keytruda for the last two tumors that were treated. Before that she was on Yervoy. Everything was treated with gamma knife radiation.
Get the best radioncologist you can find, get a second opinion and start imunotheraphy ASAP after treatment.
Good luck.
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- May 18, 2016 at 3:26 am
Hi Patina – Thank you! I have read (and re-read) your mom's amazing story. We want and hope that gamma knife is what'll be done asap … she'll find out tomorrow. If they wanna take any other approach, we'll be heading for the quickest 2nd opinion we can find.
I will always look forward to updates of your mom!!
Barb
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- May 18, 2016 at 3:26 am
Hi Patina – Thank you! I have read (and re-read) your mom's amazing story. We want and hope that gamma knife is what'll be done asap … she'll find out tomorrow. If they wanna take any other approach, we'll be heading for the quickest 2nd opinion we can find.
I will always look forward to updates of your mom!!
Barb
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- May 18, 2016 at 3:26 am
Hi Patina – Thank you! I have read (and re-read) your mom's amazing story. We want and hope that gamma knife is what'll be done asap … she'll find out tomorrow. If they wanna take any other approach, we'll be heading for the quickest 2nd opinion we can find.
I will always look forward to updates of your mom!!
Barb
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- May 17, 2016 at 9:42 pm
Hi!Please read my Mom’s story. She has had 28 brain mets and they can only find 1 now… She has been on Keytruda for the last two tumors that were treated. Before that she was on Yervoy. Everything was treated with gamma knife radiation.
Get the best radioncologist you can find, get a second opinion and start imunotheraphy ASAP after treatment.
Good luck.
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- May 17, 2016 at 9:42 pm
Hi!Please read my Mom’s story. She has had 28 brain mets and they can only find 1 now… She has been on Keytruda for the last two tumors that were treated. Before that she was on Yervoy. Everything was treated with gamma knife radiation.
Get the best radioncologist you can find, get a second opinion and start imunotheraphy ASAP after treatment.
Good luck.
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- May 18, 2016 at 1:44 am
Dang it! I was hoping for a clean MRI for your sister, but, as we know melanoma does what it wants. Now she can get started in taking care of those brain mets and have an awesome outcome like Patina's mom!
Sending good thoughts,
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- May 18, 2016 at 3:32 am
Thank you Jenn, I am grabbing them!
I am optimistic for a good outcome and so is she!! She's had two infusions of ipi-nivo and we already know that she is responding, so now we want the gamma treatment to be done, however long the process takes, so she can get back to infusion # 3.
By response I mean that she had subcutaneous bumps that have gone or diminished substantially, had several large tumours (soft tissue and bone) that grew exponentially in the first few days of ipi/nivo before subsiding and shrinking way down. I'm thinking now that this new development (sudden, severe tinnitus and retina problems) in the brain may be that the ipi/nivo are doing their thing in there too >> that the big tumours got big suddenly because they swelled up with lymphocytes >> and the ones that are bleeding are doing so because they are "under attack" and are self-destructing even as I write this. This is the story I'm telling myself and I'm sticking to it!! 🙂
Barb
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- May 18, 2016 at 3:32 am
Thank you Jenn, I am grabbing them!
I am optimistic for a good outcome and so is she!! She's had two infusions of ipi-nivo and we already know that she is responding, so now we want the gamma treatment to be done, however long the process takes, so she can get back to infusion # 3.
By response I mean that she had subcutaneous bumps that have gone or diminished substantially, had several large tumours (soft tissue and bone) that grew exponentially in the first few days of ipi/nivo before subsiding and shrinking way down. I'm thinking now that this new development (sudden, severe tinnitus and retina problems) in the brain may be that the ipi/nivo are doing their thing in there too >> that the big tumours got big suddenly because they swelled up with lymphocytes >> and the ones that are bleeding are doing so because they are "under attack" and are self-destructing even as I write this. This is the story I'm telling myself and I'm sticking to it!! 🙂
Barb
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- May 18, 2016 at 3:56 pm
You have a great attitude about all of this, Barb, keep it up! A lot of people ask me how I stay so positive, I say, I have no other option!
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- May 18, 2016 at 3:56 pm
You have a great attitude about all of this, Barb, keep it up! A lot of people ask me how I stay so positive, I say, I have no other option!
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- May 18, 2016 at 3:56 pm
You have a great attitude about all of this, Barb, keep it up! A lot of people ask me how I stay so positive, I say, I have no other option!
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- May 18, 2016 at 3:32 am
Thank you Jenn, I am grabbing them!
I am optimistic for a good outcome and so is she!! She's had two infusions of ipi-nivo and we already know that she is responding, so now we want the gamma treatment to be done, however long the process takes, so she can get back to infusion # 3.
By response I mean that she had subcutaneous bumps that have gone or diminished substantially, had several large tumours (soft tissue and bone) that grew exponentially in the first few days of ipi/nivo before subsiding and shrinking way down. I'm thinking now that this new development (sudden, severe tinnitus and retina problems) in the brain may be that the ipi/nivo are doing their thing in there too >> that the big tumours got big suddenly because they swelled up with lymphocytes >> and the ones that are bleeding are doing so because they are "under attack" and are self-destructing even as I write this. This is the story I'm telling myself and I'm sticking to it!! 🙂
Barb
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- May 18, 2016 at 1:44 am
Dang it! I was hoping for a clean MRI for your sister, but, as we know melanoma does what it wants. Now she can get started in taking care of those brain mets and have an awesome outcome like Patina's mom!
Sending good thoughts,
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- May 18, 2016 at 1:44 am
Dang it! I was hoping for a clean MRI for your sister, but, as we know melanoma does what it wants. Now she can get started in taking care of those brain mets and have an awesome outcome like Patina's mom!
Sending good thoughts,
-
- May 19, 2016 at 12:18 am
Update, 24 hrs. later
I'm really ticked off and disappointed to report this: radio-oncologist won't do anything but WBR – 10 treatments – and they'll start Fri. (maybe not 'til Tues., we have a long weekend coming up).
My sister agreed to do it, signed all the forms and doesn't want to take any time for a 2nd opinion. She's scared to death and believes there is no time to wait … and this doc reinforces it (IMO). They say there are too many mets for cyber knife (more than 10) and that it would take too long (they don't even do gamma knife … as I understand it, those are closely related but separate technologies and cyberknife procedures take longer). Nobody has told her how many mets there are, only describing them as "too many" and "innumerable." Most are 2 mm (maybe cms??) or less, largest is 8 and is bleeding.
Driver's licence gone too, from 6 – 9 months. She's pretty down about it all tonight – so am I but I'm still going to see if there's something better … nothing to say we can't switch if there is!!
Best,
Barb
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- May 19, 2016 at 12:18 am
Update, 24 hrs. later
I'm really ticked off and disappointed to report this: radio-oncologist won't do anything but WBR – 10 treatments – and they'll start Fri. (maybe not 'til Tues., we have a long weekend coming up).
My sister agreed to do it, signed all the forms and doesn't want to take any time for a 2nd opinion. She's scared to death and believes there is no time to wait … and this doc reinforces it (IMO). They say there are too many mets for cyber knife (more than 10) and that it would take too long (they don't even do gamma knife … as I understand it, those are closely related but separate technologies and cyberknife procedures take longer). Nobody has told her how many mets there are, only describing them as "too many" and "innumerable." Most are 2 mm (maybe cms??) or less, largest is 8 and is bleeding.
Driver's licence gone too, from 6 – 9 months. She's pretty down about it all tonight – so am I but I'm still going to see if there's something better … nothing to say we can't switch if there is!!
Best,
Barb
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- May 19, 2016 at 12:18 am
Update, 24 hrs. later
I'm really ticked off and disappointed to report this: radio-oncologist won't do anything but WBR – 10 treatments – and they'll start Fri. (maybe not 'til Tues., we have a long weekend coming up).
My sister agreed to do it, signed all the forms and doesn't want to take any time for a 2nd opinion. She's scared to death and believes there is no time to wait … and this doc reinforces it (IMO). They say there are too many mets for cyber knife (more than 10) and that it would take too long (they don't even do gamma knife … as I understand it, those are closely related but separate technologies and cyberknife procedures take longer). Nobody has told her how many mets there are, only describing them as "too many" and "innumerable." Most are 2 mm (maybe cms??) or less, largest is 8 and is bleeding.
Driver's licence gone too, from 6 – 9 months. She's pretty down about it all tonight – so am I but I'm still going to see if there's something better … nothing to say we can't switch if there is!!
Best,
Barb
-
- May 19, 2016 at 12:18 am
Update, 24 hrs. later
I'm really ticked off and disappointed to report this: radio-oncologist won't do anything but WBR – 10 treatments – and they'll start Fri. (maybe not 'til Tues., we have a long weekend coming up).
My sister agreed to do it, signed all the forms and doesn't want to take any time for a 2nd opinion. She's scared to death and believes there is no time to wait … and this doc reinforces it (IMO). They say there are too many mets for cyber knife (more than 10) and that it would take too long (they don't even do gamma knife … as I understand it, those are closely related but separate technologies and cyberknife procedures take longer). Nobody has told her how many mets there are, only describing them as "too many" and "innumerable." Most are 2 mm (maybe cms??) or less, largest is 8 and is bleeding.
Driver's licence gone too, from 6 – 9 months. She's pretty down about it all tonight – so am I but I'm still going to see if there's something better … nothing to say we can't switch if there is!!
Best,
Barb
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- May 19, 2016 at 6:57 pm
I'm sorry to hear this news, Barb. I hope your sister gets the treatment that she needs. Ed always links to good information so hopefully that will be helpful for you. It is so hard when someone we love is ill especially if we don't feel they are getting the level of treatment they should. It is so hard but remember that the treatment decision is hers. If another option is not viable, she will really need you to be supportive of her choice. And as different things work for different people, we can't be sure that this isn't the best choice given her situation.
Have you requested the write-up of her MRI or asked to view it on-screen? Visually seeing what is meant by "innumerable" might be helpful for perspective. My brother had 10 brain mets (4 visible on regular MRI and an additional 6 only seen on a Hi-Res MRI the day of the procedure). They did SRS for all of those but said if he had many more they would have done WBR.
I hope you both achieve some peace of mind, clarity and access to the best way forward.
Best,
Maggie
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- May 19, 2016 at 6:57 pm
I'm sorry to hear this news, Barb. I hope your sister gets the treatment that she needs. Ed always links to good information so hopefully that will be helpful for you. It is so hard when someone we love is ill especially if we don't feel they are getting the level of treatment they should. It is so hard but remember that the treatment decision is hers. If another option is not viable, she will really need you to be supportive of her choice. And as different things work for different people, we can't be sure that this isn't the best choice given her situation.
Have you requested the write-up of her MRI or asked to view it on-screen? Visually seeing what is meant by "innumerable" might be helpful for perspective. My brother had 10 brain mets (4 visible on regular MRI and an additional 6 only seen on a Hi-Res MRI the day of the procedure). They did SRS for all of those but said if he had many more they would have done WBR.
I hope you both achieve some peace of mind, clarity and access to the best way forward.
Best,
Maggie
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- May 19, 2016 at 6:57 pm
I'm sorry to hear this news, Barb. I hope your sister gets the treatment that she needs. Ed always links to good information so hopefully that will be helpful for you. It is so hard when someone we love is ill especially if we don't feel they are getting the level of treatment they should. It is so hard but remember that the treatment decision is hers. If another option is not viable, she will really need you to be supportive of her choice. And as different things work for different people, we can't be sure that this isn't the best choice given her situation.
Have you requested the write-up of her MRI or asked to view it on-screen? Visually seeing what is meant by "innumerable" might be helpful for perspective. My brother had 10 brain mets (4 visible on regular MRI and an additional 6 only seen on a Hi-Res MRI the day of the procedure). They did SRS for all of those but said if he had many more they would have done WBR.
I hope you both achieve some peace of mind, clarity and access to the best way forward.
Best,
Maggie
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- May 19, 2016 at 12:18 am
Update, 24 hrs. later
I'm really ticked off and disappointed to report this: radio-oncologist won't do anything but WBR – 10 treatments – and they'll start Fri. (maybe not 'til Tues., we have a long weekend coming up).
My sister agreed to do it, signed all the forms and doesn't want to take any time for a 2nd opinion. She's scared to death and believes there is no time to wait … and this doc reinforces it (IMO). They say there are too many mets for cyber knife (more than 10) and that it would take too long (they don't even do gamma knife … as I understand it, those are closely related but separate technologies and cyberknife procedures take longer). Nobody has told her how many mets there are, only describing them as "too many" and "innumerable." Most are 2 mm (maybe cms??) or less, largest is 8 and is bleeding.
Driver's licence gone too, from 6 – 9 months. She's pretty down about it all tonight – so am I but I'm still going to see if there's something better … nothing to say we can't switch if there is!!
Best,
Barb
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- May 19, 2016 at 1:26 pm
Hi Barb, as far as something better, I have a couple of link to help in the education process which is tough in a short period of time to make a decision. https://www.youtube.com/watch?v=mnPN8YyfX_Y and a second video that is excellent and current when it comes to benefits of stereotatic approach. https://www.youtube.com/watch?v=TIxCAo8xzj0 . I know that Ottawa isn't really close but the team there is top notch with Dr. Shawn Malone as Immuno-oncologist-radiologist and Dr.John Sinclair Neuro Surgeon https://www.youtube.com/watch?v=tf2wLO-_yQQ . Best Wishes at a tough time!!!!Ed
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- May 19, 2016 at 1:26 pm
Hi Barb, as far as something better, I have a couple of link to help in the education process which is tough in a short period of time to make a decision. https://www.youtube.com/watch?v=mnPN8YyfX_Y and a second video that is excellent and current when it comes to benefits of stereotatic approach. https://www.youtube.com/watch?v=TIxCAo8xzj0 . I know that Ottawa isn't really close but the team there is top notch with Dr. Shawn Malone as Immuno-oncologist-radiologist and Dr.John Sinclair Neuro Surgeon https://www.youtube.com/watch?v=tf2wLO-_yQQ . Best Wishes at a tough time!!!!Ed
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- May 19, 2016 at 1:26 pm
Hi Barb, as far as something better, I have a couple of link to help in the education process which is tough in a short period of time to make a decision. https://www.youtube.com/watch?v=mnPN8YyfX_Y and a second video that is excellent and current when it comes to benefits of stereotatic approach. https://www.youtube.com/watch?v=TIxCAo8xzj0 . I know that Ottawa isn't really close but the team there is top notch with Dr. Shawn Malone as Immuno-oncologist-radiologist and Dr.John Sinclair Neuro Surgeon https://www.youtube.com/watch?v=tf2wLO-_yQQ . Best Wishes at a tough time!!!!Ed
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- May 19, 2016 at 4:22 pm
Thank you Ed for the names over there. I'd dearly love for her to see someone else >> it's a matter of finding someone who will tackle all the mets she has. And time factor too. As I said, they have her terrified into believing there is no time to make other inquiries!!
Thanks for all best wishes!!
Barb
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- May 19, 2016 at 4:22 pm
Thank you Ed for the names over there. I'd dearly love for her to see someone else >> it's a matter of finding someone who will tackle all the mets she has. And time factor too. As I said, they have her terrified into believing there is no time to make other inquiries!!
Thanks for all best wishes!!
Barb
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- May 19, 2016 at 4:22 pm
Thank you Ed for the names over there. I'd dearly love for her to see someone else >> it's a matter of finding someone who will tackle all the mets she has. And time factor too. As I said, they have her terrified into believing there is no time to make other inquiries!!
Thanks for all best wishes!!
Barb
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- May 19, 2016 at 5:42 pm
Barb – I know this is long shot and they may not take your call or review the case in time, but here goes anyway. When my wife and I met with folks at Sloan Kettering about her brain mets, the onc said in passing that they will not do gamma knife when there are more than 4-5 mets, but others do – there's a debate over whether it's a good idea or not. He mentioned Cornell as a place that will zap them even when there are multiples.
I think the logic at Sloan is that the whole point of the cyberknife is to use multiple beams to get the met from different angles so no one part of the brain (except the met) gets too much radiation. Howevere when there are lots of them, then it kind of defeats the purpose (I'm paraphrasing his language here, obviously).
I hope this helps and that your sister and you get through this.
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- May 19, 2016 at 5:42 pm
Barb – I know this is long shot and they may not take your call or review the case in time, but here goes anyway. When my wife and I met with folks at Sloan Kettering about her brain mets, the onc said in passing that they will not do gamma knife when there are more than 4-5 mets, but others do – there's a debate over whether it's a good idea or not. He mentioned Cornell as a place that will zap them even when there are multiples.
I think the logic at Sloan is that the whole point of the cyberknife is to use multiple beams to get the met from different angles so no one part of the brain (except the met) gets too much radiation. Howevere when there are lots of them, then it kind of defeats the purpose (I'm paraphrasing his language here, obviously).
I hope this helps and that your sister and you get through this.
-
- May 19, 2016 at 5:42 pm
Barb – I know this is long shot and they may not take your call or review the case in time, but here goes anyway. When my wife and I met with folks at Sloan Kettering about her brain mets, the onc said in passing that they will not do gamma knife when there are more than 4-5 mets, but others do – there's a debate over whether it's a good idea or not. He mentioned Cornell as a place that will zap them even when there are multiples.
I think the logic at Sloan is that the whole point of the cyberknife is to use multiple beams to get the met from different angles so no one part of the brain (except the met) gets too much radiation. Howevere when there are lots of them, then it kind of defeats the purpose (I'm paraphrasing his language here, obviously).
I hope this helps and that your sister and you get through this.
-
- May 19, 2016 at 12:18 am
Update, 24 hrs. later
I'm really ticked off and disappointed to report this: radio-oncologist won't do anything but WBR – 10 treatments – and they'll start Fri. (maybe not 'til Tues., we have a long weekend coming up).
My sister agreed to do it, signed all the forms and doesn't want to take any time for a 2nd opinion. She's scared to death and believes there is no time to wait … and this doc reinforces it (IMO). They say there are too many mets for cyber knife (more than 10) and that it would take too long (they don't even do gamma knife … as I understand it, those are closely related but separate technologies and cyberknife procedures take longer). Nobody has told her how many mets there are, only describing them as "too many" and "innumerable." Most are 2 mm (maybe cms??) or less, largest is 8 and is bleeding.
Driver's licence gone too, from 6 – 9 months. She's pretty down about it all tonight – so am I but I'm still going to see if there's something better … nothing to say we can't switch if there is!!
Best,
Barb
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- May 19, 2016 at 7:04 pm
Hi Barb,
I know its frustrating, but I have to say my very first thought when you originally posted was that WBR would be the only way to go. If mets are too many, and too small to count, then they are also too small to be seen on an MRI. I will have to agree with what JohnA brought up and think you should have faith that this treatment approach probably is the best you can do at this point in time.
Gary
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- May 19, 2016 at 7:04 pm
Hi Barb,
I know its frustrating, but I have to say my very first thought when you originally posted was that WBR would be the only way to go. If mets are too many, and too small to count, then they are also too small to be seen on an MRI. I will have to agree with what JohnA brought up and think you should have faith that this treatment approach probably is the best you can do at this point in time.
Gary
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- May 19, 2016 at 7:04 pm
Hi Barb,
I know its frustrating, but I have to say my very first thought when you originally posted was that WBR would be the only way to go. If mets are too many, and too small to count, then they are also too small to be seen on an MRI. I will have to agree with what JohnA brought up and think you should have faith that this treatment approach probably is the best you can do at this point in time.
Gary
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- May 19, 2016 at 9:19 pm
Thank you Maggie, John and Gary. I'm taking all advice and suggestions in and listening to everything you each say. I know that it is her decision and I can only encourage her so much before it'll upset her … don't want to do that. But I do want to be ready if she changes her mind and wants a 2nd opinion. I probably already screwed up today >> texted my niece to ask that she also try to encourage her mom … only to find out my neice didn't know about these latest developments yet. I feel so bad and have apologized!! At the outset of all this though, I did promise both my neices I'd never keep anything from them … but still .. already feeling I'm doing more harm than good. I'll let it be now and see what develops.
Thank you sincerely to everyone that has responded – it's ALL helpful!!
Best,
Barb
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- May 19, 2016 at 9:19 pm
Thank you Maggie, John and Gary. I'm taking all advice and suggestions in and listening to everything you each say. I know that it is her decision and I can only encourage her so much before it'll upset her … don't want to do that. But I do want to be ready if she changes her mind and wants a 2nd opinion. I probably already screwed up today >> texted my niece to ask that she also try to encourage her mom … only to find out my neice didn't know about these latest developments yet. I feel so bad and have apologized!! At the outset of all this though, I did promise both my neices I'd never keep anything from them … but still .. already feeling I'm doing more harm than good. I'll let it be now and see what develops.
Thank you sincerely to everyone that has responded – it's ALL helpful!!
Best,
Barb
-
- May 19, 2016 at 9:19 pm
Thank you Maggie, John and Gary. I'm taking all advice and suggestions in and listening to everything you each say. I know that it is her decision and I can only encourage her so much before it'll upset her … don't want to do that. But I do want to be ready if she changes her mind and wants a 2nd opinion. I probably already screwed up today >> texted my niece to ask that she also try to encourage her mom … only to find out my neice didn't know about these latest developments yet. I feel so bad and have apologized!! At the outset of all this though, I did promise both my neices I'd never keep anything from them … but still .. already feeling I'm doing more harm than good. I'll let it be now and see what develops.
Thank you sincerely to everyone that has responded – it's ALL helpful!!
Best,
Barb
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