› Forums › General Melanoma Community › Feeling much beter emotionally
- This topic has 24 replies, 7 voices, and was last updated 12 years, 6 months ago by
robyn44.
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- November 6, 2011 at 2:04 pm
Had 2 days of deep depression, but I'm putting that behind me and remaining strong and hopeful.
Even though I finished Yervoy 3 weeks ago and have 2 small brain mets, my lymphocyes as of this week were still high, so I'm really hoping they're going to help keep the micromets away in my brain and everywhere else. I'm a great responder to it, so that has to say something.
Had 2 days of deep depression, but I'm putting that behind me and remaining strong and hopeful.
Even though I finished Yervoy 3 weeks ago and have 2 small brain mets, my lymphocyes as of this week were still high, so I'm really hoping they're going to help keep the micromets away in my brain and everywhere else. I'm a great responder to it, so that has to say something.
I sent an email to my team of Dr's and asked to put WBR on hold and just gamma knife the one that's easy right away. They either have to figure out how to get the blood away from the other tumour or just get it out somehow. I'm saving WBR until I've got much more than 2. You can either be lucky that it doesn't come back for a while, or unlucky that it keeps coming back. I spoke to someone whose been dealing with 14 brain mets for 2 years!!! SRS on all of them – there is hope people!!
2 Things – does gamma knife get rid of small tumours right away or does it take time?? For those who had blood in 1 of their tumours, what did you have done to eventually have it removed?
Lisa
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- November 6, 2011 at 3:06 pm
On my wife's 3rd and 4th small brain tumors, which were gammaknifed, the smallest one disappeared and the other one shrunk by 40% thirty days after treatment. According to our radiation oncologist every person is different in their tumors' radiation sensitivity.
Good luck!
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- November 6, 2011 at 3:06 pm
On my wife's 3rd and 4th small brain tumors, which were gammaknifed, the smallest one disappeared and the other one shrunk by 40% thirty days after treatment. According to our radiation oncologist every person is different in their tumors' radiation sensitivity.
Good luck!
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- November 6, 2011 at 3:06 pm
On my wife's 3rd and 4th small brain tumors, which were gammaknifed, the smallest one disappeared and the other one shrunk by 40% thirty days after treatment. According to our radiation oncologist every person is different in their tumors' radiation sensitivity.
Good luck!
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- November 6, 2011 at 4:20 pm
ILisa- I hope this offers some comfort and hope! I have had 5 craniotomies and 3 Gamma knife procedures> I have also had a thoracotomy. The Gamma Knife proceures were no big deal. The crani were easy as well. All of the cranis were in potentialy dangerous places and due to an amazing surgeion I have had no deficits. I am treated at MDAnderson. My team has strongly discouraged WBR at this time. The rational being that so far my ttumores are found early and one or two at a time. That way if things progress there is an option. The team there said they can do WBR x2 as long as there is 4 months beween completion of 1st time andbeginning of second.
I work over 50 hours a week, have small children (3, 6) and remain actively involved in their lives and care. I realize how fortunate I am to recover from the surgies easily. Everyone is difernt but the outcomes are hopeful. Melanoma brain lesions are known for bleeding. ll 5 of mine have bleed. The gamma knife procedures were done even with the bleeding. All of my lesions responded except 1. Due to ongoing problems iwth bleeding the cranis were done.
Gld you are responding to ipi and have been around people at MDA that have had response in their brains from ipi. Good thoughts and glad you are feeling better. For me attitude makes allthe diference!
Take Car
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- November 6, 2011 at 5:41 pm
Hi Lisa, Glad you are feeling better emotionally. My husband had cyberknife on two tumors early this year. No problems at all. Got off the table and felt great immediately after. He has also had crani surgery, Bio-chemo and WBR between August thru Oct.. He has managed all of this without steroids. He has lost a bit of memory, some hearing, and reduced vision in his left eye. His cognititive abilities have also slowed down a bit.
To Robyn, who is your surgeon at MD? We see Papa, Dr Azeem did our Craniotomy, and Dr G was WBR.
Jan
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- November 6, 2011 at 5:41 pm
Hi Lisa, Glad you are feeling better emotionally. My husband had cyberknife on two tumors early this year. No problems at all. Got off the table and felt great immediately after. He has also had crani surgery, Bio-chemo and WBR between August thru Oct.. He has managed all of this without steroids. He has lost a bit of memory, some hearing, and reduced vision in his left eye. His cognititive abilities have also slowed down a bit.
To Robyn, who is your surgeon at MD? We see Papa, Dr Azeem did our Craniotomy, and Dr G was WBR.
Jan
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- November 6, 2011 at 5:41 pm
Hi Lisa, Glad you are feeling better emotionally. My husband had cyberknife on two tumors early this year. No problems at all. Got off the table and felt great immediately after. He has also had crani surgery, Bio-chemo and WBR between August thru Oct.. He has managed all of this without steroids. He has lost a bit of memory, some hearing, and reduced vision in his left eye. His cognititive abilities have also slowed down a bit.
To Robyn, who is your surgeon at MD? We see Papa, Dr Azeem did our Craniotomy, and Dr G was WBR.
Jan
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- November 6, 2011 at 6:17 pm
Robyn
Thank you so much for posting – it really means the world to me.
I just got 2 emails this morning booking me for a discussion meeting tomorrow. I told them I want to delay WBR and attempt gamma on both of them. I know 1 is in a difficult place and has blood around it, so they said they couldn't gamma knife it. They want to show me my MRI slides again tomorrow, probably telling me I need to do WBR. I don't want to, so there has to be something they can do. Right now I'm very thankful that there are in areas described as "great and good". I'm also hoping that ipi works some magic in there.
Like you, I have children – just 1, but she just turned 2. I don't ever let anybody let me think I'm doomed because I believe that good things and miracles have happened for people.
I wish you continued success with all of this, plus the possibility that more might not come around. Have you done ipi?
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- November 6, 2011 at 6:17 pm
Robyn
Thank you so much for posting – it really means the world to me.
I just got 2 emails this morning booking me for a discussion meeting tomorrow. I told them I want to delay WBR and attempt gamma on both of them. I know 1 is in a difficult place and has blood around it, so they said they couldn't gamma knife it. They want to show me my MRI slides again tomorrow, probably telling me I need to do WBR. I don't want to, so there has to be something they can do. Right now I'm very thankful that there are in areas described as "great and good". I'm also hoping that ipi works some magic in there.
Like you, I have children – just 1, but she just turned 2. I don't ever let anybody let me think I'm doomed because I believe that good things and miracles have happened for people.
I wish you continued success with all of this, plus the possibility that more might not come around. Have you done ipi?
-
- November 6, 2011 at 6:17 pm
Robyn
Thank you so much for posting – it really means the world to me.
I just got 2 emails this morning booking me for a discussion meeting tomorrow. I told them I want to delay WBR and attempt gamma on both of them. I know 1 is in a difficult place and has blood around it, so they said they couldn't gamma knife it. They want to show me my MRI slides again tomorrow, probably telling me I need to do WBR. I don't want to, so there has to be something they can do. Right now I'm very thankful that there are in areas described as "great and good". I'm also hoping that ipi works some magic in there.
Like you, I have children – just 1, but she just turned 2. I don't ever let anybody let me think I'm doomed because I believe that good things and miracles have happened for people.
I wish you continued success with all of this, plus the possibility that more might not come around. Have you done ipi?
-
- November 7, 2011 at 5:11 am
Lisa- I have not tried IpI yet. I am supposed to start Zelboraf this week if my MRI tomorrow night is stable. Have recent bleed in the tumor bed of most recent crain- (june 29). Not sure if it is "just a bleed" or if a new tumor is growing. I generally have seizures when I have a new tumor and have not had any symptoms since early Sept. and found the bleed. If not improved from last scan will have 6th crani next week. WBR has been pushed firmly in the past. But current team (have had for 2 years now) do not believ that now is the time to use this "tool" as they call it! It sounds like you are educating yourself and making the best decision you can with the info. you have. It is hard to "guess" what will ultimatly be the best decision. I have complete trust in my neurosurgeon and although I am hesitant to start the inhibitor he agrees with the melanoma specialist tthat now is a good time. My systemic scans are clear so they believe this may prevent future issues or at least keep it at bay or slow! Hope your meeting goes well. Take Care Robyn
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- November 7, 2011 at 5:11 am
Lisa- I have not tried IpI yet. I am supposed to start Zelboraf this week if my MRI tomorrow night is stable. Have recent bleed in the tumor bed of most recent crain- (june 29). Not sure if it is "just a bleed" or if a new tumor is growing. I generally have seizures when I have a new tumor and have not had any symptoms since early Sept. and found the bleed. If not improved from last scan will have 6th crani next week. WBR has been pushed firmly in the past. But current team (have had for 2 years now) do not believ that now is the time to use this "tool" as they call it! It sounds like you are educating yourself and making the best decision you can with the info. you have. It is hard to "guess" what will ultimatly be the best decision. I have complete trust in my neurosurgeon and although I am hesitant to start the inhibitor he agrees with the melanoma specialist tthat now is a good time. My systemic scans are clear so they believe this may prevent future issues or at least keep it at bay or slow! Hope your meeting goes well. Take Care Robyn
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- November 7, 2011 at 5:11 am
Lisa- I have not tried IpI yet. I am supposed to start Zelboraf this week if my MRI tomorrow night is stable. Have recent bleed in the tumor bed of most recent crain- (june 29). Not sure if it is "just a bleed" or if a new tumor is growing. I generally have seizures when I have a new tumor and have not had any symptoms since early Sept. and found the bleed. If not improved from last scan will have 6th crani next week. WBR has been pushed firmly in the past. But current team (have had for 2 years now) do not believ that now is the time to use this "tool" as they call it! It sounds like you are educating yourself and making the best decision you can with the info. you have. It is hard to "guess" what will ultimatly be the best decision. I have complete trust in my neurosurgeon and although I am hesitant to start the inhibitor he agrees with the melanoma specialist tthat now is a good time. My systemic scans are clear so they believe this may prevent future issues or at least keep it at bay or slow! Hope your meeting goes well. Take Care Robyn
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- November 6, 2011 at 4:20 pm
ILisa- I hope this offers some comfort and hope! I have had 5 craniotomies and 3 Gamma knife procedures> I have also had a thoracotomy. The Gamma Knife proceures were no big deal. The crani were easy as well. All of the cranis were in potentialy dangerous places and due to an amazing surgeion I have had no deficits. I am treated at MDAnderson. My team has strongly discouraged WBR at this time. The rational being that so far my ttumores are found early and one or two at a time. That way if things progress there is an option. The team there said they can do WBR x2 as long as there is 4 months beween completion of 1st time andbeginning of second.
I work over 50 hours a week, have small children (3, 6) and remain actively involved in their lives and care. I realize how fortunate I am to recover from the surgies easily. Everyone is difernt but the outcomes are hopeful. Melanoma brain lesions are known for bleeding. ll 5 of mine have bleed. The gamma knife procedures were done even with the bleeding. All of my lesions responded except 1. Due to ongoing problems iwth bleeding the cranis were done.
Gld you are responding to ipi and have been around people at MDA that have had response in their brains from ipi. Good thoughts and glad you are feeling better. For me attitude makes allthe diference!
Take Car
-
- November 6, 2011 at 4:20 pm
ILisa- I hope this offers some comfort and hope! I have had 5 craniotomies and 3 Gamma knife procedures> I have also had a thoracotomy. The Gamma Knife proceures were no big deal. The crani were easy as well. All of the cranis were in potentialy dangerous places and due to an amazing surgeion I have had no deficits. I am treated at MDAnderson. My team has strongly discouraged WBR at this time. The rational being that so far my ttumores are found early and one or two at a time. That way if things progress there is an option. The team there said they can do WBR x2 as long as there is 4 months beween completion of 1st time andbeginning of second.
I work over 50 hours a week, have small children (3, 6) and remain actively involved in their lives and care. I realize how fortunate I am to recover from the surgies easily. Everyone is difernt but the outcomes are hopeful. Melanoma brain lesions are known for bleeding. ll 5 of mine have bleed. The gamma knife procedures were done even with the bleeding. All of my lesions responded except 1. Due to ongoing problems iwth bleeding the cranis were done.
Gld you are responding to ipi and have been around people at MDA that have had response in their brains from ipi. Good thoughts and glad you are feeling better. For me attitude makes allthe diference!
Take Car
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- November 7, 2011 at 1:51 am
Lisa, I feel that the emotional battle is truly a great challenge to one's coping mechanisms. Of course, it also affects family and friends as well as the patient.
However, I think that prayer helps us to find inner peace and hope for the future.
You remain in my prayers.
Frank from Australia
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- November 7, 2011 at 1:51 am
Lisa, I feel that the emotional battle is truly a great challenge to one's coping mechanisms. Of course, it also affects family and friends as well as the patient.
However, I think that prayer helps us to find inner peace and hope for the future.
You remain in my prayers.
Frank from Australia
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- November 7, 2011 at 1:51 am
Lisa, I feel that the emotional battle is truly a great challenge to one's coping mechanisms. Of course, it also affects family and friends as well as the patient.
However, I think that prayer helps us to find inner peace and hope for the future.
You remain in my prayers.
Frank from Australia
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- November 7, 2011 at 4:02 am
I hope all goes the way you want at your meeting.
For me, the one quarter size tumor I got Gamma Knife'd was still shrinking last time I went to the doctor in September for a 2 month checkup. That was 2 months after the July 18th 2011 Gamma Knife date I had.
It can take months sometimes, sometimes they can go away.
Like someone else said, these damn brain tumors we get do like to bleed.
I remember the day after my Craniotomy, my dad said the brain surgeon said that my huge orange size one bled like crazy when he took it out and took over 2 hours extra work to get it out and fix me back up, that it was just a nasty thing especially since it was SOOOO BIG!
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- November 7, 2011 at 4:02 am
I hope all goes the way you want at your meeting.
For me, the one quarter size tumor I got Gamma Knife'd was still shrinking last time I went to the doctor in September for a 2 month checkup. That was 2 months after the July 18th 2011 Gamma Knife date I had.
It can take months sometimes, sometimes they can go away.
Like someone else said, these damn brain tumors we get do like to bleed.
I remember the day after my Craniotomy, my dad said the brain surgeon said that my huge orange size one bled like crazy when he took it out and took over 2 hours extra work to get it out and fix me back up, that it was just a nasty thing especially since it was SOOOO BIG!
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- November 7, 2011 at 4:02 am
I hope all goes the way you want at your meeting.
For me, the one quarter size tumor I got Gamma Knife'd was still shrinking last time I went to the doctor in September for a 2 month checkup. That was 2 months after the July 18th 2011 Gamma Knife date I had.
It can take months sometimes, sometimes they can go away.
Like someone else said, these damn brain tumors we get do like to bleed.
I remember the day after my Craniotomy, my dad said the brain surgeon said that my huge orange size one bled like crazy when he took it out and took over 2 hours extra work to get it out and fix me back up, that it was just a nasty thing especially since it was SOOOO BIG!
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