› Forums › General Melanoma Community › Question for lhaley
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lhaley.
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- November 20, 2011 at 2:27 pm
Hi Linda,
Since we have pretty much the same size brain, I thought I would ask you a couple of questions:
What did your Dr. say about the 2+cm tumour? Is there a high chance of it shrinking and even possibly disappearing.? If so, what are the "odds" of that happening?
What were his options of treatment in terms of blood/brain. I remember you mentioning 3 things.
Hi Linda,
Since we have pretty much the same size brain, I thought I would ask you a couple of questions:
What did your Dr. say about the 2+cm tumour? Is there a high chance of it shrinking and even possibly disappearing.? If so, what are the "odds" of that happening?
What were his options of treatment in terms of blood/brain. I remember you mentioning 3 things.
I really wish you the best of luck Linda, I truly do. Having had gamma knife last week, I'm hoping over the next few weeks, I don't have symptoms, which to me would sound like bad news because I'd be scared of it growing. It's so hard to know if the ipi I've been on has created the tumour to get bigger because of inflammation. I often wonder because I've had no symptoms from a 2.5 cm tumour, that it's because ipi is doing something. Nobody has any answers even though one of them has questioned the same thing. Radiologists sometimes don't know much about these drugs and melanoma in general, so I'm looking forward to seeing my melanoma oncologist at the end of the month.
Lisa
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- November 20, 2011 at 3:11 pm
Lisa,
They felt that it had a good chance to shrink! I was actually told the numbers of 80%. A crainectomy was given 90%. The reason they didn't go that way first is because mine is deep in the speech area and thought that there would be some brain damage. They have mapped out how they will do if they do the surgery.
Emotionally at first you were so busy making plans, actually changing their plans ect. Now that it's done you just are sitting there and waiting, for me that's the difficult part.
I woke up this morning and felt the best I have since this has begun, usually I wake up with a headache and none this morning! I was originally told that in 4 weeks it could be starting shrinking and they would wait 6 weeks to look. Because of the bleed between the scan and the planning they decided to go 4 weeks. When I had the severe headache they had me come to EMR and did a scan after 2 weeks. Since it showed that I was now stable they put the next scan off. The scan was not showing a tumor issue, it's the steroids. Because of the headaches coming and going they keep putting me back up on them. I'm now down to 2 mgs in the am and 2 at the night. The possiblility of bleeding is scary and they told me that is the greatest issue. I was up to 12mgs.
You had also commented on driving. I was told that as long as I felt ok I can drive but suggested not to drive on the interstate. I have days that i do drive and some days that my husband does all of the driving. Again, to me it's a steroid issue! They told me warnings of seizures but didn't go further. The Dr said that I should be as independent as I can just if my husband is available to drive then he should. When I quilt with my friends and it's time to go out for lunch I sure realize that they are all offering to drive and have noticed that they don't get in the car with me!
I am getting anxious also. Originally we would have the plan by THanksgiving. On Dec. 17th is my son's MBA graduation and granddaughter's birthday, then we have Christmas. I do know that health comes first but I'd like to know the plans and dates.
The 3 drugs that were brought up were: Ippi, B-raf (I am positive) and temador. I am worried with all of these steroids that my immune system is now crap. I have thrush and have been through 4 precriptions. The area that I have lymphodemia is sore ect. I'm just putting that part out of my mind. I do know that the day I have my mri they are also planning on me seeing my melanoma specialist. They do communicate with each other but definitley different opinions. I find that I tend to call the wrong one and then have to call a different one.
Right now, just so glad that I have no pressure today! Maybe it's at that point where it's starting to work!! We have to believe.
Linda
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- November 20, 2011 at 4:18 pm
Thanks so much Linda!
I'm so happy to hear you feel great. This could be great news that the tumour is shrinking and causing less problems. I'm happy to hear your Dr. is positive about this shrinking – it gives me hope as well. The fact that you have only 1 is good news (in a strange way). No more have appeared since that one grew, so that could be an indication it wasn't aggressive. How long have you had the met – did they have any idea?
I don't go in for a check until mid January which I feel is a long time.The radiologist said it takes time to shrink and scans earlier on would be confusing to figure out – especially with inflammmation, etc. I'm hoping they can do an MRI for the brain a bit sooner, so we'll see if I can get that done.
Here's hoping that we both hear great news so we can enjoy Christmas fully with our family. You have so many exciting things to look forward to, so it would be nice not to be thinking of the tumour anymore.
Lisa
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- November 20, 2011 at 4:55 pm
The last mri I had was about 14 months ago, so nothing to compare. I had headaches off and on all summer but my husband was having severe allergic issues and I just assumed we were having the same problem. Had even talked to my local oncologist and she also thought that since it was coming as sinus issus she thought that we would wait. Last year I had dropped a shredder motor on my head and that's when I had the last mri. I totally never cleared up the pain area (ends up being the same area) so I just didn't look into this. Then the teeth started hurting. Can you imagine if I had been in the dentist having a root canal and had been bleeding in the brain!!!
So far my melanoma has come back in isololated tumors, that's the hope right now that this continues. Every Dr that I've talked to just feels that my mel is so strange. This all started in 1979! While it is scary that it has hung around, I was only 27 at the time and have had a great life! I did learn because of that to enjoy each day!
Linda
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- November 20, 2011 at 4:55 pm
The last mri I had was about 14 months ago, so nothing to compare. I had headaches off and on all summer but my husband was having severe allergic issues and I just assumed we were having the same problem. Had even talked to my local oncologist and she also thought that since it was coming as sinus issus she thought that we would wait. Last year I had dropped a shredder motor on my head and that's when I had the last mri. I totally never cleared up the pain area (ends up being the same area) so I just didn't look into this. Then the teeth started hurting. Can you imagine if I had been in the dentist having a root canal and had been bleeding in the brain!!!
So far my melanoma has come back in isololated tumors, that's the hope right now that this continues. Every Dr that I've talked to just feels that my mel is so strange. This all started in 1979! While it is scary that it has hung around, I was only 27 at the time and have had a great life! I did learn because of that to enjoy each day!
Linda
-
- November 20, 2011 at 4:55 pm
The last mri I had was about 14 months ago, so nothing to compare. I had headaches off and on all summer but my husband was having severe allergic issues and I just assumed we were having the same problem. Had even talked to my local oncologist and she also thought that since it was coming as sinus issus she thought that we would wait. Last year I had dropped a shredder motor on my head and that's when I had the last mri. I totally never cleared up the pain area (ends up being the same area) so I just didn't look into this. Then the teeth started hurting. Can you imagine if I had been in the dentist having a root canal and had been bleeding in the brain!!!
So far my melanoma has come back in isololated tumors, that's the hope right now that this continues. Every Dr that I've talked to just feels that my mel is so strange. This all started in 1979! While it is scary that it has hung around, I was only 27 at the time and have had a great life! I did learn because of that to enjoy each day!
Linda
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- November 20, 2011 at 4:18 pm
Thanks so much Linda!
I'm so happy to hear you feel great. This could be great news that the tumour is shrinking and causing less problems. I'm happy to hear your Dr. is positive about this shrinking – it gives me hope as well. The fact that you have only 1 is good news (in a strange way). No more have appeared since that one grew, so that could be an indication it wasn't aggressive. How long have you had the met – did they have any idea?
I don't go in for a check until mid January which I feel is a long time.The radiologist said it takes time to shrink and scans earlier on would be confusing to figure out – especially with inflammmation, etc. I'm hoping they can do an MRI for the brain a bit sooner, so we'll see if I can get that done.
Here's hoping that we both hear great news so we can enjoy Christmas fully with our family. You have so many exciting things to look forward to, so it would be nice not to be thinking of the tumour anymore.
Lisa
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- November 20, 2011 at 4:18 pm
Thanks so much Linda!
I'm so happy to hear you feel great. This could be great news that the tumour is shrinking and causing less problems. I'm happy to hear your Dr. is positive about this shrinking – it gives me hope as well. The fact that you have only 1 is good news (in a strange way). No more have appeared since that one grew, so that could be an indication it wasn't aggressive. How long have you had the met – did they have any idea?
I don't go in for a check until mid January which I feel is a long time.The radiologist said it takes time to shrink and scans earlier on would be confusing to figure out – especially with inflammmation, etc. I'm hoping they can do an MRI for the brain a bit sooner, so we'll see if I can get that done.
Here's hoping that we both hear great news so we can enjoy Christmas fully with our family. You have so many exciting things to look forward to, so it would be nice not to be thinking of the tumour anymore.
Lisa
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- November 21, 2011 at 4:54 am
Linda, Temodar will lower your immune system…its regular chemo and not immunotherapy. It also caused my platelets to go down. The red cells were almost ok and not a concern for me. And I had two anti puke meds I had to start taking the day before Temodar or I would barf my guts out…thats' just me though…
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- November 21, 2011 at 4:54 am
Linda, Temodar will lower your immune system…its regular chemo and not immunotherapy. It also caused my platelets to go down. The red cells were almost ok and not a concern for me. And I had two anti puke meds I had to start taking the day before Temodar or I would barf my guts out…thats' just me though…
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- November 21, 2011 at 12:51 pm
Lynn,
My Dr had given me the 3 options IF the SRS or crainectomy doesn't work, and/or if the next scan shows something else. He told me that with melanoma Temodar in the brain area just gives 6%. If I need to then I'll branch into some of the smaller odds, for now, I'm hoping I can start healing!!!! As the steroids are lessoning I am feeling better!
Linda
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- November 21, 2011 at 12:51 pm
Lynn,
My Dr had given me the 3 options IF the SRS or crainectomy doesn't work, and/or if the next scan shows something else. He told me that with melanoma Temodar in the brain area just gives 6%. If I need to then I'll branch into some of the smaller odds, for now, I'm hoping I can start healing!!!! As the steroids are lessoning I am feeling better!
Linda
-
- November 21, 2011 at 12:51 pm
Lynn,
My Dr had given me the 3 options IF the SRS or crainectomy doesn't work, and/or if the next scan shows something else. He told me that with melanoma Temodar in the brain area just gives 6%. If I need to then I'll branch into some of the smaller odds, for now, I'm hoping I can start healing!!!! As the steroids are lessoning I am feeling better!
Linda
-
- November 21, 2011 at 4:54 am
Linda, Temodar will lower your immune system…its regular chemo and not immunotherapy. It also caused my platelets to go down. The red cells were almost ok and not a concern for me. And I had two anti puke meds I had to start taking the day before Temodar or I would barf my guts out…thats' just me though…
-
- November 20, 2011 at 3:11 pm
Lisa,
They felt that it had a good chance to shrink! I was actually told the numbers of 80%. A crainectomy was given 90%. The reason they didn't go that way first is because mine is deep in the speech area and thought that there would be some brain damage. They have mapped out how they will do if they do the surgery.
Emotionally at first you were so busy making plans, actually changing their plans ect. Now that it's done you just are sitting there and waiting, for me that's the difficult part.
I woke up this morning and felt the best I have since this has begun, usually I wake up with a headache and none this morning! I was originally told that in 4 weeks it could be starting shrinking and they would wait 6 weeks to look. Because of the bleed between the scan and the planning they decided to go 4 weeks. When I had the severe headache they had me come to EMR and did a scan after 2 weeks. Since it showed that I was now stable they put the next scan off. The scan was not showing a tumor issue, it's the steroids. Because of the headaches coming and going they keep putting me back up on them. I'm now down to 2 mgs in the am and 2 at the night. The possiblility of bleeding is scary and they told me that is the greatest issue. I was up to 12mgs.
You had also commented on driving. I was told that as long as I felt ok I can drive but suggested not to drive on the interstate. I have days that i do drive and some days that my husband does all of the driving. Again, to me it's a steroid issue! They told me warnings of seizures but didn't go further. The Dr said that I should be as independent as I can just if my husband is available to drive then he should. When I quilt with my friends and it's time to go out for lunch I sure realize that they are all offering to drive and have noticed that they don't get in the car with me!
I am getting anxious also. Originally we would have the plan by THanksgiving. On Dec. 17th is my son's MBA graduation and granddaughter's birthday, then we have Christmas. I do know that health comes first but I'd like to know the plans and dates.
The 3 drugs that were brought up were: Ippi, B-raf (I am positive) and temador. I am worried with all of these steroids that my immune system is now crap. I have thrush and have been through 4 precriptions. The area that I have lymphodemia is sore ect. I'm just putting that part out of my mind. I do know that the day I have my mri they are also planning on me seeing my melanoma specialist. They do communicate with each other but definitley different opinions. I find that I tend to call the wrong one and then have to call a different one.
Right now, just so glad that I have no pressure today! Maybe it's at that point where it's starting to work!! We have to believe.
Linda
-
- November 20, 2011 at 3:11 pm
Lisa,
They felt that it had a good chance to shrink! I was actually told the numbers of 80%. A crainectomy was given 90%. The reason they didn't go that way first is because mine is deep in the speech area and thought that there would be some brain damage. They have mapped out how they will do if they do the surgery.
Emotionally at first you were so busy making plans, actually changing their plans ect. Now that it's done you just are sitting there and waiting, for me that's the difficult part.
I woke up this morning and felt the best I have since this has begun, usually I wake up with a headache and none this morning! I was originally told that in 4 weeks it could be starting shrinking and they would wait 6 weeks to look. Because of the bleed between the scan and the planning they decided to go 4 weeks. When I had the severe headache they had me come to EMR and did a scan after 2 weeks. Since it showed that I was now stable they put the next scan off. The scan was not showing a tumor issue, it's the steroids. Because of the headaches coming and going they keep putting me back up on them. I'm now down to 2 mgs in the am and 2 at the night. The possiblility of bleeding is scary and they told me that is the greatest issue. I was up to 12mgs.
You had also commented on driving. I was told that as long as I felt ok I can drive but suggested not to drive on the interstate. I have days that i do drive and some days that my husband does all of the driving. Again, to me it's a steroid issue! They told me warnings of seizures but didn't go further. The Dr said that I should be as independent as I can just if my husband is available to drive then he should. When I quilt with my friends and it's time to go out for lunch I sure realize that they are all offering to drive and have noticed that they don't get in the car with me!
I am getting anxious also. Originally we would have the plan by THanksgiving. On Dec. 17th is my son's MBA graduation and granddaughter's birthday, then we have Christmas. I do know that health comes first but I'd like to know the plans and dates.
The 3 drugs that were brought up were: Ippi, B-raf (I am positive) and temador. I am worried with all of these steroids that my immune system is now crap. I have thrush and have been through 4 precriptions. The area that I have lymphodemia is sore ect. I'm just putting that part out of my mind. I do know that the day I have my mri they are also planning on me seeing my melanoma specialist. They do communicate with each other but definitley different opinions. I find that I tend to call the wrong one and then have to call a different one.
Right now, just so glad that I have no pressure today! Maybe it's at that point where it's starting to work!! We have to believe.
Linda
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