› Forums › General Melanoma Community › brain met
- This topic has 69 replies, 23 voices, and was last updated 11 years, 11 months ago by
Dynasysman.
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- October 12, 2011 at 5:44 am
I am still shocked but news was bad. Here I was thinking I had first a sinus attack and then the dentist thought I had a fractured tooth. Was actually scheduled for a root canal. The receptionist commented during the phone that it's just not normal that she hears from these symptoms from a fractured tooth. The dentist had called in 2 others because she was confused. Life would have been so easier.
I am still shocked but news was bad. Here I was thinking I had first a sinus attack and then the dentist thought I had a fractured tooth. Was actually scheduled for a root canal. The receptionist commented during the phone that it's just not normal that she hears from these symptoms from a fractured tooth. The dentist had called in 2 others because she was confused. Life would have been so easier. The PET was planned the next morning for my regular scan. Called the oncologist and at 6:30 that morning the tumor was discovered. It's fairly large, 2.15cm and is deep in the area of language/written/ and reading. By that afternoon I was already loosing my words. Totally in denial I'm thinking it was anxiety and bloodpressure.
I had to wait for the appointment and the receptionist kept appologizing that there was an emergency. Found out later it was because the team had already met. The nuero surgeon was in DC and already sent pictures. The radiologist was already called, I saw him just didn't know at the time who he was. The team worked quickly that helped us to deal emotionally.
All appointments have been completed. Talked to many different of the oncologists I've talked to in the past. Even my mel specialist that is now retired from Univ of Penn has contacted me and gave me his thoughts. I'm ready and on Monday I'll be having SRS. Plan B will be a crainectomy. They are only doing this 2nd because it is deep. The Surgeon isn't daunted by his ability but also knows damage in this area can definitely happen. He already knows how he will actually enter the area if needed to limit as possible.
I've been told that a single met has %80 success. The hope is that nothing else grows.
I'm offering the Caring Bridge if you choose to follow my story. I hate melanoma.
https://www.caringbridge.org/visit/lindahaley/settings
Linda
- Replies
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- October 12, 2011 at 8:05 am
Linda, I am stunned and saddened to read this news. However, I think that you are a real inspiration to everyone here and if anyone can overcome this obstacle – you can.
Hope that treatment will be very successful, and that you will be feeling better soon.
Take care
Frank from Australia
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- October 12, 2011 at 8:05 am
Linda, I am stunned and saddened to read this news. However, I think that you are a real inspiration to everyone here and if anyone can overcome this obstacle – you can.
Hope that treatment will be very successful, and that you will be feeling better soon.
Take care
Frank from Australia
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- October 12, 2011 at 8:05 am
Linda, I am stunned and saddened to read this news. However, I think that you are a real inspiration to everyone here and if anyone can overcome this obstacle – you can.
Hope that treatment will be very successful, and that you will be feeling better soon.
Take care
Frank from Australia
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- October 12, 2011 at 8:33 am
Dear Linda, i know you will knock this out, you just will, i am a bit lost for words at the moment but want you to know that we are sending you lots of positive energy from Oz. It sounds like you have an incredible team around you. Maybe ask your Onc. to see if you can enter a combined Ippi/Pd1 Trial post Radio.
best wishes
James
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- October 12, 2011 at 8:33 am
Dear Linda, i know you will knock this out, you just will, i am a bit lost for words at the moment but want you to know that we are sending you lots of positive energy from Oz. It sounds like you have an incredible team around you. Maybe ask your Onc. to see if you can enter a combined Ippi/Pd1 Trial post Radio.
best wishes
James
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- October 12, 2011 at 8:33 am
Dear Linda, i know you will knock this out, you just will, i am a bit lost for words at the moment but want you to know that we are sending you lots of positive energy from Oz. It sounds like you have an incredible team around you. Maybe ask your Onc. to see if you can enter a combined Ippi/Pd1 Trial post Radio.
best wishes
James
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- October 12, 2011 at 10:57 am
Linda,
I am devasted that you are going through this…you have been through so much already. You have always been here for all of us with your uplifting and informative responses, and we will be here for you! I really hate this disease! Having said that, you are a true warrior and have what it takes to battle this beast. Please know that you are in my thoughts and prayers. I am looking forward to hearing about your latest victory…God speed!
Tricia
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- October 12, 2011 at 10:57 am
Linda,
I am devasted that you are going through this…you have been through so much already. You have always been here for all of us with your uplifting and informative responses, and we will be here for you! I really hate this disease! Having said that, you are a true warrior and have what it takes to battle this beast. Please know that you are in my thoughts and prayers. I am looking forward to hearing about your latest victory…God speed!
Tricia
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- October 12, 2011 at 10:57 am
Linda,
I am devasted that you are going through this…you have been through so much already. You have always been here for all of us with your uplifting and informative responses, and we will be here for you! I really hate this disease! Having said that, you are a true warrior and have what it takes to battle this beast. Please know that you are in my thoughts and prayers. I am looking forward to hearing about your latest victory…God speed!
Tricia
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- October 12, 2011 at 11:41 am
Linda,
I'm sorry to hear this news for you, but as others have said you are strong and you need to get through it. I'm praying SRS gets rid of it for you and quick!
I hate melanoma too.
Rebecca
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- October 12, 2011 at 11:41 am
Linda,
I'm sorry to hear this news for you, but as others have said you are strong and you need to get through it. I'm praying SRS gets rid of it for you and quick!
I hate melanoma too.
Rebecca
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- October 12, 2011 at 11:41 am
Linda,
I'm sorry to hear this news for you, but as others have said you are strong and you need to get through it. I'm praying SRS gets rid of it for you and quick!
I hate melanoma too.
Rebecca
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- October 12, 2011 at 1:08 pm
Hello Linda,
Prayers are being sent and with your strong will you can make it through this stumbling block also. Thank you for sharing the caring bridge and keep up the fight. I hope and pray that the SRS works well and you will be back to tell us all the good news soon.
Judy (loving wife and caregiver of Gene)
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- October 12, 2011 at 1:08 pm
Hello Linda,
Prayers are being sent and with your strong will you can make it through this stumbling block also. Thank you for sharing the caring bridge and keep up the fight. I hope and pray that the SRS works well and you will be back to tell us all the good news soon.
Judy (loving wife and caregiver of Gene)
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- October 12, 2011 at 1:08 pm
Hello Linda,
Prayers are being sent and with your strong will you can make it through this stumbling block also. Thank you for sharing the caring bridge and keep up the fight. I hope and pray that the SRS works well and you will be back to tell us all the good news soon.
Judy (loving wife and caregiver of Gene)
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- October 12, 2011 at 2:08 pm
Linda,
There is a silver cord that keeps me attached to this group, I come back to read updates but this was not one I expected. You are one of the first supporters for me in this group and that is what it’s all about here. I know melanoma sucks big time…If I have learned anything my only advise is to not lose sight of family and loving everyday. The fight/war takes over all our time because surviving is what it’s all about but really it’s about love.
Write… Write… Write… Keep a journal telling all.
Peace to you Linda.
Deb
lovingwife to Bob, May 27th
redesign08.blogspot.com -
- October 12, 2011 at 2:08 pm
Linda,
There is a silver cord that keeps me attached to this group, I come back to read updates but this was not one I expected. You are one of the first supporters for me in this group and that is what it’s all about here. I know melanoma sucks big time…If I have learned anything my only advise is to not lose sight of family and loving everyday. The fight/war takes over all our time because surviving is what it’s all about but really it’s about love.
Write… Write… Write… Keep a journal telling all.
Peace to you Linda.
Deb
lovingwife to Bob, May 27th
redesign08.blogspot.com -
- October 12, 2011 at 2:08 pm
Linda,
There is a silver cord that keeps me attached to this group, I come back to read updates but this was not one I expected. You are one of the first supporters for me in this group and that is what it’s all about here. I know melanoma sucks big time…If I have learned anything my only advise is to not lose sight of family and loving everyday. The fight/war takes over all our time because surviving is what it’s all about but really it’s about love.
Write… Write… Write… Keep a journal telling all.
Peace to you Linda.
Deb
lovingwife to Bob, May 27th
redesign08.blogspot.com -
- October 12, 2011 at 2:10 pm
Linda,
thanks for writing, you've been on my mind, of course, for the last few days, I"m glad to hear things are moving along so swiftly. I know you've had good luck in the past knocking out single mets, so I hope that you are just as successful this time.
dian
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- October 12, 2011 at 2:10 pm
Linda,
thanks for writing, you've been on my mind, of course, for the last few days, I"m glad to hear things are moving along so swiftly. I know you've had good luck in the past knocking out single mets, so I hope that you are just as successful this time.
dian
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- October 12, 2011 at 2:10 pm
Linda,
thanks for writing, you've been on my mind, of course, for the last few days, I"m glad to hear things are moving along so swiftly. I know you've had good luck in the past knocking out single mets, so I hope that you are just as successful this time.
dian
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- October 12, 2011 at 3:46 pm
I'm so sorry to hear this Linda – I can only imagine what a shock this was for you. But . .it sounds like you are surrounded by a great health care team and they have all the plans in place to get the met gone! Please know you are in my prayers and sending good thoughts that the SRS treatment is a complete success!
While this is a setback, I have no doubt you will come out fighting as you always have ..
Mary
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- October 12, 2011 at 3:46 pm
I'm so sorry to hear this Linda – I can only imagine what a shock this was for you. But . .it sounds like you are surrounded by a great health care team and they have all the plans in place to get the met gone! Please know you are in my prayers and sending good thoughts that the SRS treatment is a complete success!
While this is a setback, I have no doubt you will come out fighting as you always have ..
Mary
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- October 12, 2011 at 3:46 pm
I'm so sorry to hear this Linda – I can only imagine what a shock this was for you. But . .it sounds like you are surrounded by a great health care team and they have all the plans in place to get the met gone! Please know you are in my prayers and sending good thoughts that the SRS treatment is a complete success!
While this is a setback, I have no doubt you will come out fighting as you always have ..
Mary
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- October 12, 2011 at 4:33 pm
I am so sorry to hear that you have to deal with a new met. I am so glad that you discovered it before it grew any larger. I am so glad to hear that your doc is so confident in his abilities to zap that bugger out of there. And 80% are fantastic odds for non-recurrence! I am so hopeful for you and your speedy recovery. Thanks for setting up the Caring Bridge page.
Cristy, Stage IV
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- October 12, 2011 at 4:33 pm
I am so sorry to hear that you have to deal with a new met. I am so glad that you discovered it before it grew any larger. I am so glad to hear that your doc is so confident in his abilities to zap that bugger out of there. And 80% are fantastic odds for non-recurrence! I am so hopeful for you and your speedy recovery. Thanks for setting up the Caring Bridge page.
Cristy, Stage IV
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- October 12, 2011 at 4:33 pm
I am so sorry to hear that you have to deal with a new met. I am so glad that you discovered it before it grew any larger. I am so glad to hear that your doc is so confident in his abilities to zap that bugger out of there. And 80% are fantastic odds for non-recurrence! I am so hopeful for you and your speedy recovery. Thanks for setting up the Caring Bridge page.
Cristy, Stage IV
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- October 13, 2011 at 12:42 am
Linda,
I am so very sorry to read this post. It's great that you have a plan in place so quickly but it sure would have been better if a root canal could have fixed it all.
Please know that you and your family are in my thoughts and prayers. Things can change so quickly with this disease.
I will follow your Caring Bridge site as well. We are here to support you and help you in any possible way.
Another very sad day in the melanoma world.
Stay Strong
King
Stage IV 7/05 Liver mets
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- October 13, 2011 at 12:42 am
Linda,
I am so very sorry to read this post. It's great that you have a plan in place so quickly but it sure would have been better if a root canal could have fixed it all.
Please know that you and your family are in my thoughts and prayers. Things can change so quickly with this disease.
I will follow your Caring Bridge site as well. We are here to support you and help you in any possible way.
Another very sad day in the melanoma world.
Stay Strong
King
Stage IV 7/05 Liver mets
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- October 13, 2011 at 12:42 am
Linda,
I am so very sorry to read this post. It's great that you have a plan in place so quickly but it sure would have been better if a root canal could have fixed it all.
Please know that you and your family are in my thoughts and prayers. Things can change so quickly with this disease.
I will follow your Caring Bridge site as well. We are here to support you and help you in any possible way.
Another very sad day in the melanoma world.
Stay Strong
King
Stage IV 7/05 Liver mets
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- October 13, 2011 at 1:35 am
Dear Linda – I haven't been in contact much via writing, or commenting. I've been the great lurker here lately. (We had the breast melanoma issue in common, mine 3 years ago.) What I have seen by lurking, is that you are the first line of support for many here on the board. Well, let us rally and now support you, in prayer or whatever it takes from this gallery of friends you have acquired. How many times have we all stated that we HATE this #$@!! disease. Saying it again, with great anger. You are an inspiration and will continue to be an inspiration, Linda.
With the sincerest of good wishes and prayers for you and what sounds like an incredibly supportive medical staff, I say goodnight and God bless.
CarolA – Stage III and holding on
Amherst, NY
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- October 13, 2011 at 1:35 am
Dear Linda – I haven't been in contact much via writing, or commenting. I've been the great lurker here lately. (We had the breast melanoma issue in common, mine 3 years ago.) What I have seen by lurking, is that you are the first line of support for many here on the board. Well, let us rally and now support you, in prayer or whatever it takes from this gallery of friends you have acquired. How many times have we all stated that we HATE this #$@!! disease. Saying it again, with great anger. You are an inspiration and will continue to be an inspiration, Linda.
With the sincerest of good wishes and prayers for you and what sounds like an incredibly supportive medical staff, I say goodnight and God bless.
CarolA – Stage III and holding on
Amherst, NY
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- October 13, 2011 at 1:35 am
Dear Linda – I haven't been in contact much via writing, or commenting. I've been the great lurker here lately. (We had the breast melanoma issue in common, mine 3 years ago.) What I have seen by lurking, is that you are the first line of support for many here on the board. Well, let us rally and now support you, in prayer or whatever it takes from this gallery of friends you have acquired. How many times have we all stated that we HATE this #$@!! disease. Saying it again, with great anger. You are an inspiration and will continue to be an inspiration, Linda.
With the sincerest of good wishes and prayers for you and what sounds like an incredibly supportive medical staff, I say goodnight and God bless.
CarolA – Stage III and holding on
Amherst, NY
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- October 13, 2011 at 2:50 am
Linda,
I am deeply saddened by this news, but I know you have enough heart and soul to come through this! You have been here for all of us, and I can only speak for myself, but I'll be out here reading, praying, and sending the most positive thoughts and words your way.
God bless and Godspeed!
Jacki
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- October 13, 2011 at 2:50 am
Linda,
I am deeply saddened by this news, but I know you have enough heart and soul to come through this! You have been here for all of us, and I can only speak for myself, but I'll be out here reading, praying, and sending the most positive thoughts and words your way.
God bless and Godspeed!
Jacki
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- October 13, 2011 at 10:00 am
Dear Linda,
I was so shocked to read your post!!! I am so sorry that this had to be a horrible melanoma brain tumor. I am glad that you have a great plan so quickly and will be dealing with the tumor right away. I'll be thinking of you!
HUGS!!
Vermont_Donna, stage 3a
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- October 13, 2011 at 10:00 am
Dear Linda,
I was so shocked to read your post!!! I am so sorry that this had to be a horrible melanoma brain tumor. I am glad that you have a great plan so quickly and will be dealing with the tumor right away. I'll be thinking of you!
HUGS!!
Vermont_Donna, stage 3a
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- October 13, 2011 at 12:15 pm
Linda,
I too was very saddened and shocked to read about your new occurence, but happy to hear there's a plan in place and ready to go. You've giving us all such tremendous support in times of need, so we're all routing for a successful surgery and healing.
I'm sending good thoughts and the best of wishes your way.
Lisa – Stage 4
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- October 13, 2011 at 12:15 pm
Linda,
I too was very saddened and shocked to read about your new occurence, but happy to hear there's a plan in place and ready to go. You've giving us all such tremendous support in times of need, so we're all routing for a successful surgery and healing.
I'm sending good thoughts and the best of wishes your way.
Lisa – Stage 4
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- October 13, 2011 at 12:15 pm
Linda,
I too was very saddened and shocked to read about your new occurence, but happy to hear there's a plan in place and ready to go. You've giving us all such tremendous support in times of need, so we're all routing for a successful surgery and healing.
I'm sending good thoughts and the best of wishes your way.
Lisa – Stage 4
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- October 13, 2011 at 10:00 am
Dear Linda,
I was so shocked to read your post!!! I am so sorry that this had to be a horrible melanoma brain tumor. I am glad that you have a great plan so quickly and will be dealing with the tumor right away. I'll be thinking of you!
HUGS!!
Vermont_Donna, stage 3a
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- October 13, 2011 at 2:50 am
Linda,
I am deeply saddened by this news, but I know you have enough heart and soul to come through this! You have been here for all of us, and I can only speak for myself, but I'll be out here reading, praying, and sending the most positive thoughts and words your way.
God bless and Godspeed!
Jacki
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- October 13, 2011 at 12:43 pm
I'd like to thank all of your comments and support. It's amazing how at times the board has been more support then intermediate family. Closest friends and immediate family is great, brothers and sisters are scared and I guess to upset to talk. When I recover I will have some words with family, especially the help my husband and son need.
The procedure is early Monday morning. My hubby is not technology (ha ha) and we are spending time getting things that should have been done years ago. Our son is the backup with paperwork but he lives 3.5 hours away. He doesn't even know how to use a cellphone! We've been married 37 years and he's my block. My sil is co-authoring my Caring Bridge if need be.
Am feeling this will work, just have my moments where the fear moves on. Like life changed in 79 and then a new change in 06 I continued. I do want the feeling that I feel good again. I know that the steroids are part of the fuzzy look.
I know that as a long term survivor it has always worried me for the board when I progressed and how it also scares other members. We are each unique and our destination can be different. I hope next year I'll be doing well with just regular MRI's added to my plan. Last night we found out that my husbands best friend also now has stage IV follicular lymphoma. Chaz and I have set a date next year to celebrate.
Love ya,
Linda
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- October 13, 2011 at 12:43 pm
I'd like to thank all of your comments and support. It's amazing how at times the board has been more support then intermediate family. Closest friends and immediate family is great, brothers and sisters are scared and I guess to upset to talk. When I recover I will have some words with family, especially the help my husband and son need.
The procedure is early Monday morning. My hubby is not technology (ha ha) and we are spending time getting things that should have been done years ago. Our son is the backup with paperwork but he lives 3.5 hours away. He doesn't even know how to use a cellphone! We've been married 37 years and he's my block. My sil is co-authoring my Caring Bridge if need be.
Am feeling this will work, just have my moments where the fear moves on. Like life changed in 79 and then a new change in 06 I continued. I do want the feeling that I feel good again. I know that the steroids are part of the fuzzy look.
I know that as a long term survivor it has always worried me for the board when I progressed and how it also scares other members. We are each unique and our destination can be different. I hope next year I'll be doing well with just regular MRI's added to my plan. Last night we found out that my husbands best friend also now has stage IV follicular lymphoma. Chaz and I have set a date next year to celebrate.
Love ya,
Linda
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- October 13, 2011 at 12:43 pm
I'd like to thank all of your comments and support. It's amazing how at times the board has been more support then intermediate family. Closest friends and immediate family is great, brothers and sisters are scared and I guess to upset to talk. When I recover I will have some words with family, especially the help my husband and son need.
The procedure is early Monday morning. My hubby is not technology (ha ha) and we are spending time getting things that should have been done years ago. Our son is the backup with paperwork but he lives 3.5 hours away. He doesn't even know how to use a cellphone! We've been married 37 years and he's my block. My sil is co-authoring my Caring Bridge if need be.
Am feeling this will work, just have my moments where the fear moves on. Like life changed in 79 and then a new change in 06 I continued. I do want the feeling that I feel good again. I know that the steroids are part of the fuzzy look.
I know that as a long term survivor it has always worried me for the board when I progressed and how it also scares other members. We are each unique and our destination can be different. I hope next year I'll be doing well with just regular MRI's added to my plan. Last night we found out that my husbands best friend also now has stage IV follicular lymphoma. Chaz and I have set a date next year to celebrate.
Love ya,
Linda
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- October 13, 2011 at 2:26 pm
Oh my Poor Linda she who always gives me support and lovely words and thoughts.
well, now it is turn about I shall continue to pray for you and all of us here as I usually do. You will beat this thing, I trust in that you will.
I want to join the carring brdige thing but it requires passwords and I just at this moment cannot remember I do write them down, but man that list is too long. )prob half dont even work)
Please keep us all informed.
With Love
Bonnie
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- October 13, 2011 at 2:26 pm
Oh my Poor Linda she who always gives me support and lovely words and thoughts.
well, now it is turn about I shall continue to pray for you and all of us here as I usually do. You will beat this thing, I trust in that you will.
I want to join the carring brdige thing but it requires passwords and I just at this moment cannot remember I do write them down, but man that list is too long. )prob half dont even work)
Please keep us all informed.
With Love
Bonnie
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- October 13, 2011 at 2:26 pm
Oh my Poor Linda she who always gives me support and lovely words and thoughts.
well, now it is turn about I shall continue to pray for you and all of us here as I usually do. You will beat this thing, I trust in that you will.
I want to join the carring brdige thing but it requires passwords and I just at this moment cannot remember I do write them down, but man that list is too long. )prob half dont even work)
Please keep us all informed.
With Love
Bonnie
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- October 14, 2011 at 11:57 am
Hello Linda,
I am so sorry to read this news. I have never met you but you have answered many of my posts, as well as many others, at times when I have really needed somebody who understood and had a cool head. I am praying for you across the ocean as I know many others are. It is wonderful you have such a great medical team around you and I hope that your family are able to understand and find their own way to support you. Thank you again from one of the many people on this board who have benefited from your kind words and knowledge.
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- October 14, 2011 at 11:57 am
Hello Linda,
I am so sorry to read this news. I have never met you but you have answered many of my posts, as well as many others, at times when I have really needed somebody who understood and had a cool head. I am praying for you across the ocean as I know many others are. It is wonderful you have such a great medical team around you and I hope that your family are able to understand and find their own way to support you. Thank you again from one of the many people on this board who have benefited from your kind words and knowledge.
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- October 14, 2011 at 11:57 am
Hello Linda,
I am so sorry to read this news. I have never met you but you have answered many of my posts, as well as many others, at times when I have really needed somebody who understood and had a cool head. I am praying for you across the ocean as I know many others are. It is wonderful you have such a great medical team around you and I hope that your family are able to understand and find their own way to support you. Thank you again from one of the many people on this board who have benefited from your kind words and knowledge.
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- October 14, 2011 at 3:18 pm
Sorry it took so long to get to responding to this, Linda. We got some bad news ourselves this week and I wasn't ready to respond until now. I'm glad to hear that your docs think they can nip this thing in the bud. I am hoping for a long, long NED for you!
Michelle, wife of Don
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- October 14, 2011 at 3:18 pm
Sorry it took so long to get to responding to this, Linda. We got some bad news ourselves this week and I wasn't ready to respond until now. I'm glad to hear that your docs think they can nip this thing in the bud. I am hoping for a long, long NED for you!
Michelle, wife of Don
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- October 14, 2011 at 3:18 pm
Sorry it took so long to get to responding to this, Linda. We got some bad news ourselves this week and I wasn't ready to respond until now. I'm glad to hear that your docs think they can nip this thing in the bud. I am hoping for a long, long NED for you!
Michelle, wife of Don
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- October 17, 2011 at 1:41 am
Linda —Here’s hoping that one of the warmest, toughest, mostbgenuine people any of us know will come through tomorrow sailing smoothly.
We all hate melanoma But if Karma matters, you’re traveling on the Wings of Caring.
My prayers and best wishes are with you.
Roger
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- October 17, 2011 at 1:41 am
Linda —Here’s hoping that one of the warmest, toughest, mostbgenuine people any of us know will come through tomorrow sailing smoothly.
We all hate melanoma But if Karma matters, you’re traveling on the Wings of Caring.
My prayers and best wishes are with you.
Roger
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- October 17, 2011 at 1:41 am
Linda —Here’s hoping that one of the warmest, toughest, mostbgenuine people any of us know will come through tomorrow sailing smoothly.
We all hate melanoma But if Karma matters, you’re traveling on the Wings of Caring.
My prayers and best wishes are with you.
Roger
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