› Forums › General Melanoma Community › Zel has stopped working
- This topic has 66 replies, 21 voices, and was last updated 12 years, 5 months ago by
SidneyGracie.
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- December 6, 2012 at 12:27 am
Last brain mri had shown everything was either stable or shrinking. Ct was clear. Yesterday the mri showed that the 2 that had been stabled (radiated in June and then bleeding) is still shrinking however there are now about 20 brain lesions. Options are now limited.
I had always said I won't do WBR but I have to try. They fit me for the mask today and will start on Friday. Once this is finished I will be trying Yervoy.
Linda
Last brain mri had shown everything was either stable or shrinking. Ct was clear. Yesterday the mri showed that the 2 that had been stabled (radiated in June and then bleeding) is still shrinking however there are now about 20 brain lesions. Options are now limited.
I had always said I won't do WBR but I have to try. They fit me for the mask today and will start on Friday. Once this is finished I will be trying Yervoy.
Linda
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- December 6, 2012 at 1:16 am
Linda,
So sorry to read this news, but I remember that your melanoma fighting skills are awesome! I am holding you in the light and sending love and virtual hugs. I pray WBR and Yervoy are the winning combination.
Peace and love,
Lear
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- December 6, 2012 at 2:18 am
Dear Linda,You’ve been through so much; that’s the thing about this sucky disease…we can never say never.
The good thing is that you have a plan. I hope and pray that this combo works for you. You, my friend, are one brave, strong lady!
Love,
Karen -
- December 6, 2012 at 2:18 am
Dear Linda,You’ve been through so much; that’s the thing about this sucky disease…we can never say never.
The good thing is that you have a plan. I hope and pray that this combo works for you. You, my friend, are one brave, strong lady!
Love,
Karen -
- December 6, 2012 at 2:18 am
Dear Linda,You’ve been through so much; that’s the thing about this sucky disease…we can never say never.
The good thing is that you have a plan. I hope and pray that this combo works for you. You, my friend, are one brave, strong lady!
Love,
Karen
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- December 6, 2012 at 1:37 am
Sorry for the new development, Linda. Praying the WBR puts a hold on things and that ipi does the trick. I'll be thinking of and praying for you during this process. Fen
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- December 6, 2012 at 1:54 am
Sooo sorry to hear this Linda ! It is so devastating to get negative results in any way. Please know you are cared
for here and keep us updated on your treatment plans. WE ARE ALL PULLING FOR YOU and PRAYING FOR YOU !
Nancy and Wayne (3 X WARRIOR) <><
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- December 6, 2012 at 1:54 am
Sooo sorry to hear this Linda ! It is so devastating to get negative results in any way. Please know you are cared
for here and keep us updated on your treatment plans. WE ARE ALL PULLING FOR YOU and PRAYING FOR YOU !
Nancy and Wayne (3 X WARRIOR) <><
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- December 6, 2012 at 1:54 am
Sooo sorry to hear this Linda ! It is so devastating to get negative results in any way. Please know you are cared
for here and keep us updated on your treatment plans. WE ARE ALL PULLING FOR YOU and PRAYING FOR YOU !
Nancy and Wayne (3 X WARRIOR) <><
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- December 6, 2012 at 1:52 am
Linda, you've really got the fighting spirit with this news. Good luck with with the few weeks, hope you'll be starting Yervoy soon. At least "they" suspect radiation + Yervoy are a good combination, body and brain both.
When contemplating the possibility of WBR I am where you've been — wanting to say "no way" and being very happy to avoid it so far. But I've also read the messages from folks on this forum who reported getting through it well. I wish you the best from this next round of treatments.
– Kyle
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- December 6, 2012 at 1:52 am
Linda, you've really got the fighting spirit with this news. Good luck with with the few weeks, hope you'll be starting Yervoy soon. At least "they" suspect radiation + Yervoy are a good combination, body and brain both.
When contemplating the possibility of WBR I am where you've been — wanting to say "no way" and being very happy to avoid it so far. But I've also read the messages from folks on this forum who reported getting through it well. I wish you the best from this next round of treatments.
– Kyle
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- December 6, 2012 at 1:52 am
Linda, you've really got the fighting spirit with this news. Good luck with with the few weeks, hope you'll be starting Yervoy soon. At least "they" suspect radiation + Yervoy are a good combination, body and brain both.
When contemplating the possibility of WBR I am where you've been — wanting to say "no way" and being very happy to avoid it so far. But I've also read the messages from folks on this forum who reported getting through it well. I wish you the best from this next round of treatments.
– Kyle
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- December 6, 2012 at 2:27 am
Oh, Linda! Such disappointing news! I'm just glad that they did an MRI and found the mets while they are still so small.
I was very reluctant for my brother to have WBR but, like you, he really didn't have a choice. He had 2 large mets and several small ones. One of the large mets bled and caused a stroke and the doctors didn't want to take a chance of that happening again.
It turns out that the WBR wasn't so bad. My brother got more and more fatigued as the treatments went on (10 treatments over 2 weeks) but within 2 or 3 weeks he bounced back. His long term effects aren't too bad, either. His short term memory is erratic and he has had to learn to carry a little notebook around with him all the time and discipline himself to write things down. He had to write down all his computer passwords. He got a big calendar to write down his appointments because he can't remember them. Things like that. Oh, and he sometimes can't find a word he is looking for and has to search around in his head for a different word. (Of course, being over 60, I find myself doing that, too!) However, he never had any seizures and is back to driving. He enjoys working on his sailboat and going out to dinner and having visitors and overall he feels pretty good.
I hope and pray that the WBR works as well for you and that the Yervoy knocks the remaining mets flat!
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- December 6, 2012 at 2:27 am
Oh, Linda! Such disappointing news! I'm just glad that they did an MRI and found the mets while they are still so small.
I was very reluctant for my brother to have WBR but, like you, he really didn't have a choice. He had 2 large mets and several small ones. One of the large mets bled and caused a stroke and the doctors didn't want to take a chance of that happening again.
It turns out that the WBR wasn't so bad. My brother got more and more fatigued as the treatments went on (10 treatments over 2 weeks) but within 2 or 3 weeks he bounced back. His long term effects aren't too bad, either. His short term memory is erratic and he has had to learn to carry a little notebook around with him all the time and discipline himself to write things down. He had to write down all his computer passwords. He got a big calendar to write down his appointments because he can't remember them. Things like that. Oh, and he sometimes can't find a word he is looking for and has to search around in his head for a different word. (Of course, being over 60, I find myself doing that, too!) However, he never had any seizures and is back to driving. He enjoys working on his sailboat and going out to dinner and having visitors and overall he feels pretty good.
I hope and pray that the WBR works as well for you and that the Yervoy knocks the remaining mets flat!
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- December 6, 2012 at 2:27 am
Oh, Linda! Such disappointing news! I'm just glad that they did an MRI and found the mets while they are still so small.
I was very reluctant for my brother to have WBR but, like you, he really didn't have a choice. He had 2 large mets and several small ones. One of the large mets bled and caused a stroke and the doctors didn't want to take a chance of that happening again.
It turns out that the WBR wasn't so bad. My brother got more and more fatigued as the treatments went on (10 treatments over 2 weeks) but within 2 or 3 weeks he bounced back. His long term effects aren't too bad, either. His short term memory is erratic and he has had to learn to carry a little notebook around with him all the time and discipline himself to write things down. He had to write down all his computer passwords. He got a big calendar to write down his appointments because he can't remember them. Things like that. Oh, and he sometimes can't find a word he is looking for and has to search around in his head for a different word. (Of course, being over 60, I find myself doing that, too!) However, he never had any seizures and is back to driving. He enjoys working on his sailboat and going out to dinner and having visitors and overall he feels pretty good.
I hope and pray that the WBR works as well for you and that the Yervoy knocks the remaining mets flat!
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- December 6, 2012 at 3:10 am
Well, you are a smart girl and you know the deal with all the calculations; , plan A, B, C and D.
You have surrounded yourself with a team that will do your bidding because it is your chances and therefore your choice; yet informed.
You go girl and do not look back; do your level best.
That has held you in good stead so far.
Be confident.
If I may; get away from everybody and everything and find a mirror. Look into your own eyes in that mirror; and i mean LOOK………..stare into your own eyes , pierce your inner eye and if you look long enough, your eyes will open up your inner self.
Truly, just try it. It just might help.
Cheers,
Charlie
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- December 6, 2012 at 3:10 am
Well, you are a smart girl and you know the deal with all the calculations; , plan A, B, C and D.
You have surrounded yourself with a team that will do your bidding because it is your chances and therefore your choice; yet informed.
You go girl and do not look back; do your level best.
That has held you in good stead so far.
Be confident.
If I may; get away from everybody and everything and find a mirror. Look into your own eyes in that mirror; and i mean LOOK………..stare into your own eyes , pierce your inner eye and if you look long enough, your eyes will open up your inner self.
Truly, just try it. It just might help.
Cheers,
Charlie
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- December 6, 2012 at 3:10 am
Well, you are a smart girl and you know the deal with all the calculations; , plan A, B, C and D.
You have surrounded yourself with a team that will do your bidding because it is your chances and therefore your choice; yet informed.
You go girl and do not look back; do your level best.
That has held you in good stead so far.
Be confident.
If I may; get away from everybody and everything and find a mirror. Look into your own eyes in that mirror; and i mean LOOK………..stare into your own eyes , pierce your inner eye and if you look long enough, your eyes will open up your inner self.
Truly, just try it. It just might help.
Cheers,
Charlie
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- December 6, 2012 at 3:11 am
So very sorry to hear this Linda. I will be praying for you. There are several trials studying Ipi and SRS or Ipi and WBR, thinking is that the radiation can kick start the Ipi. Keep fighting!Amy
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- December 6, 2012 at 3:11 am
So very sorry to hear this Linda. I will be praying for you. There are several trials studying Ipi and SRS or Ipi and WBR, thinking is that the radiation can kick start the Ipi. Keep fighting!Amy
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- December 6, 2012 at 4:16 am
Dear Linda,
Im sorry to hear the MRI results……..I hate this disease. Go for the whole brain and don't look back….it might just hold the mel till you get onto IPI. My heart goes out to you during this time, stay positive and keep fighting.
Love Nahmi
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- December 6, 2012 at 4:16 am
Dear Linda,
Im sorry to hear the MRI results……..I hate this disease. Go for the whole brain and don't look back….it might just hold the mel till you get onto IPI. My heart goes out to you during this time, stay positive and keep fighting.
Love Nahmi
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- December 6, 2012 at 4:16 am
Dear Linda,
Im sorry to hear the MRI results……..I hate this disease. Go for the whole brain and don't look back….it might just hold the mel till you get onto IPI. My heart goes out to you during this time, stay positive and keep fighting.
Love Nahmi
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- December 6, 2012 at 3:11 am
So very sorry to hear this Linda. I will be praying for you. There are several trials studying Ipi and SRS or Ipi and WBR, thinking is that the radiation can kick start the Ipi. Keep fighting!Amy
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- December 6, 2012 at 4:40 am
Dear Linda, Adding my prayers, good thoughts, good wishes to the others. I hope tomorrow finds your confidence higher, your determination strong and that along with that, your day better than yesterday. You ARE a warrior in this battle. I wish there was more we could do for you, and I know you know that feeling. We stand behind you in prayer and in spirit.
CarolA
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- December 6, 2012 at 4:40 am
Dear Linda, Adding my prayers, good thoughts, good wishes to the others. I hope tomorrow finds your confidence higher, your determination strong and that along with that, your day better than yesterday. You ARE a warrior in this battle. I wish there was more we could do for you, and I know you know that feeling. We stand behind you in prayer and in spirit.
CarolA
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- December 6, 2012 at 4:40 am
Dear Linda, Adding my prayers, good thoughts, good wishes to the others. I hope tomorrow finds your confidence higher, your determination strong and that along with that, your day better than yesterday. You ARE a warrior in this battle. I wish there was more we could do for you, and I know you know that feeling. We stand behind you in prayer and in spirit.
CarolA
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- December 6, 2012 at 1:39 pm
I am sorry that you have new challenges to face with this but am certainly glad there are options and will be thinking of you when I light my healing candles daily. Every day is a victory and you have a lot of battle experience; keep up the good fight.
Lori cargiver to Will
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- December 6, 2012 at 1:39 pm
I am sorry that you have new challenges to face with this but am certainly glad there are options and will be thinking of you when I light my healing candles daily. Every day is a victory and you have a lot of battle experience; keep up the good fight.
Lori cargiver to Will
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- December 6, 2012 at 1:39 pm
I am sorry that you have new challenges to face with this but am certainly glad there are options and will be thinking of you when I light my healing candles daily. Every day is a victory and you have a lot of battle experience; keep up the good fight.
Lori cargiver to Will
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- December 6, 2012 at 2:53 pm
Linda,
Sorry to read this news. You have been such an inspiration to me and my husband. I will be praying the wbr blasts this stupid disease!
Thinking of you,
Rebecca
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- December 6, 2012 at 2:53 pm
Linda,
Sorry to read this news. You have been such an inspiration to me and my husband. I will be praying the wbr blasts this stupid disease!
Thinking of you,
Rebecca
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- December 6, 2012 at 2:53 pm
Linda,
Sorry to read this news. You have been such an inspiration to me and my husband. I will be praying the wbr blasts this stupid disease!
Thinking of you,
Rebecca
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- December 6, 2012 at 4:11 pm
Linda,
I am SO very sorry you received this news. I will be praying that the WBR does a number on those mets! I am glad they are getting things moving so very quickly for you, though I am sure it leaves you feeling as if you are in a whirlwind. Sounds like you were able to catch your breath for the day.
Hoping for the very best response for you,
Tina
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- December 6, 2012 at 4:11 pm
Linda,
I am SO very sorry you received this news. I will be praying that the WBR does a number on those mets! I am glad they are getting things moving so very quickly for you, though I am sure it leaves you feeling as if you are in a whirlwind. Sounds like you were able to catch your breath for the day.
Hoping for the very best response for you,
Tina
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- December 6, 2012 at 4:11 pm
Linda,
I am SO very sorry you received this news. I will be praying that the WBR does a number on those mets! I am glad they are getting things moving so very quickly for you, though I am sure it leaves you feeling as if you are in a whirlwind. Sounds like you were able to catch your breath for the day.
Hoping for the very best response for you,
Tina
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- December 6, 2012 at 9:46 pm
Hi Linda,
I am so sorry to hear this news. You've been in such a long, difficult battle. Good thoughts to you and your family. We never know what we will or will not do until we are really faced with it. That's great that you continue to hang onto hope…you have so much to live for.
You know how to do it. One day at a time…sometimes, one moment at a time.
Good luck to an awesome warrior!
Stay Strong
King
Stage IV 7/05 Liver mets
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- December 6, 2012 at 9:46 pm
Hi Linda,
I am so sorry to hear this news. You've been in such a long, difficult battle. Good thoughts to you and your family. We never know what we will or will not do until we are really faced with it. That's great that you continue to hang onto hope…you have so much to live for.
You know how to do it. One day at a time…sometimes, one moment at a time.
Good luck to an awesome warrior!
Stay Strong
King
Stage IV 7/05 Liver mets
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- December 6, 2012 at 9:46 pm
Hi Linda,
I am so sorry to hear this news. You've been in such a long, difficult battle. Good thoughts to you and your family. We never know what we will or will not do until we are really faced with it. That's great that you continue to hang onto hope…you have so much to live for.
You know how to do it. One day at a time…sometimes, one moment at a time.
Good luck to an awesome warrior!
Stay Strong
King
Stage IV 7/05 Liver mets
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- December 7, 2012 at 1:37 am
Linda,
I am so sorry to hear this new; however, if anyone can do this…you can! You are such an inspiration to so many here and know that we all will be there with you in your heart. You've made your decision, now go forward and conquer. You CAN do this!
Love ya.
Tricia
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- December 7, 2012 at 1:37 am
Linda,
I am so sorry to hear this new; however, if anyone can do this…you can! You are such an inspiration to so many here and know that we all will be there with you in your heart. You've made your decision, now go forward and conquer. You CAN do this!
Love ya.
Tricia
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- December 7, 2012 at 1:37 am
Linda,
I am so sorry to hear this new; however, if anyone can do this…you can! You are such an inspiration to so many here and know that we all will be there with you in your heart. You've made your decision, now go forward and conquer. You CAN do this!
Love ya.
Tricia
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- December 7, 2012 at 1:56 am
Linda,Like everyone else, I’m so sorry to hear about your new brain mets.
I’m rooting for you! I personally think the combination of IPI and radiation has helped me in the past.
Best of luck to you. I admire your courage and strength.
Julie in Las Vegas
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- December 7, 2012 at 1:56 am
Linda,Like everyone else, I’m so sorry to hear about your new brain mets.
I’m rooting for you! I personally think the combination of IPI and radiation has helped me in the past.
Best of luck to you. I admire your courage and strength.
Julie in Las Vegas
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- December 7, 2012 at 1:56 am
Linda,Like everyone else, I’m so sorry to hear about your new brain mets.
I’m rooting for you! I personally think the combination of IPI and radiation has helped me in the past.
Best of luck to you. I admire your courage and strength.
Julie in Las Vegas
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- December 7, 2012 at 6:36 am
Dear Linda,
I am sorry to hear this. This damn disease is so frustrating with highs and lows. I've said before that the emotional part of this journey has to be the hardest. You've been through so much and I know you will get through the WBR. Like others have said, I too have read that the Ipi seems to work better after radiation so who knows this could be your cure!! Hang in there!! (((BIG HUGS))))
Denise
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- December 7, 2012 at 6:36 am
Dear Linda,
I am sorry to hear this. This damn disease is so frustrating with highs and lows. I've said before that the emotional part of this journey has to be the hardest. You've been through so much and I know you will get through the WBR. Like others have said, I too have read that the Ipi seems to work better after radiation so who knows this could be your cure!! Hang in there!! (((BIG HUGS))))
Denise
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- December 7, 2012 at 6:36 am
Dear Linda,
I am sorry to hear this. This damn disease is so frustrating with highs and lows. I've said before that the emotional part of this journey has to be the hardest. You've been through so much and I know you will get through the WBR. Like others have said, I too have read that the Ipi seems to work better after radiation so who knows this could be your cure!! Hang in there!! (((BIG HUGS))))
Denise
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- December 11, 2012 at 4:58 am
Linda, My New Friend,
So sorry to read this post and wishing you only the best of everything coming your way.
Peace and Love, Michelle
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- December 11, 2012 at 4:58 am
Linda, My New Friend,
So sorry to read this post and wishing you only the best of everything coming your way.
Peace and Love, Michelle
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- December 11, 2012 at 4:58 am
Linda, My New Friend,
So sorry to read this post and wishing you only the best of everything coming your way.
Peace and Love, Michelle
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- December 14, 2012 at 3:25 pm
You should be part way through the Whole Brain Radiation by now. Praying that this is going well for you. My husband had WBR in September. He is very claustrophobic so that was his biggest challenge. He made it through. Praise the Lord! He did not have many side effects after they put him on steroids. Before that he was having vomiting. He has had no long term problems. His memory is fine. Good luck to you.
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- December 14, 2012 at 3:25 pm
You should be part way through the Whole Brain Radiation by now. Praying that this is going well for you. My husband had WBR in September. He is very claustrophobic so that was his biggest challenge. He made it through. Praise the Lord! He did not have many side effects after they put him on steroids. Before that he was having vomiting. He has had no long term problems. His memory is fine. Good luck to you.
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- December 14, 2012 at 3:25 pm
You should be part way through the Whole Brain Radiation by now. Praying that this is going well for you. My husband had WBR in September. He is very claustrophobic so that was his biggest challenge. He made it through. Praise the Lord! He did not have many side effects after they put him on steroids. Before that he was having vomiting. He has had no long term problems. His memory is fine. Good luck to you.
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