› Forums › General Melanoma Community › I’m lost and now my brain tumour is growing
- This topic has 72 replies, 15 voices, and was last updated 12 years ago by
momof2kids.
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- April 17, 2012 at 10:08 pm
Why is this happening?? Why would my brain tumour be growing since I had it done last November and now they say there's nothing they can do. Why can't people by resected or cyberknife!!
Some body help. I'm completely freaking out.
Why is this happening?? Why would my brain tumour be growing since I had it done last November and now they say there's nothing they can do. Why can't people by resected or cyberknife!!
Some body help. I'm completely freaking out.
- Replies
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- April 17, 2012 at 10:32 pm
Lisa,
I am so sorry for you and your family. You are so young with a lifetime ahead of you and to get a death sentence from your doctors just does not sound right. Are the doctors suggesting that you have more tumors in your brain that have not showed up yet. You should get a second & third opinion.
Are the doctors also saying that IPI is not working for you because your brain tumor is growing and you got another tumor on your last MRI. I would demand to have scans now so you know what you are up against. You need to know how much disease you have in your whole body so you can make decisions about your life.
Louisa
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- April 17, 2012 at 10:32 pm
Lisa,
I am so sorry for you and your family. You are so young with a lifetime ahead of you and to get a death sentence from your doctors just does not sound right. Are the doctors suggesting that you have more tumors in your brain that have not showed up yet. You should get a second & third opinion.
Are the doctors also saying that IPI is not working for you because your brain tumor is growing and you got another tumor on your last MRI. I would demand to have scans now so you know what you are up against. You need to know how much disease you have in your whole body so you can make decisions about your life.
Louisa
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- April 17, 2012 at 10:45 pm
My bloodwork has been great and will find more about it tomorrow. I have to hope that the ipi is working why there is a reason for larger tumour.I have 1 small one I just got and the rest where gone after gamma knife, they want me to do whole branch. I just need to know why I can’t surgery. maybe it’s too deep.
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- April 17, 2012 at 10:45 pm
My bloodwork has been great and will find more about it tomorrow. I have to hope that the ipi is working why there is a reason for larger tumour.I have 1 small one I just got and the rest where gone after gamma knife, they want me to do whole branch. I just need to know why I can’t surgery. maybe it’s too deep.
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- April 17, 2012 at 10:45 pm
My bloodwork has been great and will find more about it tomorrow. I have to hope that the ipi is working why there is a reason for larger tumour.I have 1 small one I just got and the rest where gone after gamma knife, they want me to do whole branch. I just need to know why I can’t surgery. maybe it’s too deep.
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- April 17, 2012 at 10:32 pm
Lisa,
I am so sorry for you and your family. You are so young with a lifetime ahead of you and to get a death sentence from your doctors just does not sound right. Are the doctors suggesting that you have more tumors in your brain that have not showed up yet. You should get a second & third opinion.
Are the doctors also saying that IPI is not working for you because your brain tumor is growing and you got another tumor on your last MRI. I would demand to have scans now so you know what you are up against. You need to know how much disease you have in your whole body so you can make decisions about your life.
Louisa
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- April 17, 2012 at 11:16 pm
Lisa,
I agree, you need answers. Ask them why and if you don't get the answer you like try to get another opinion. It seems other people on the board have had some good luck with agressive surgeons. If it's two deep then I pray there are other options for you. It seems crazy to get this far and not be able to do something.
My husband and I know how it is to be going through this crazy stressful time with little children so try to keep holding on to hope that these doctors will help you turn this around. Hug your little one, it will make you feel better.
Rebecca
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- April 17, 2012 at 11:16 pm
Lisa,
I agree, you need answers. Ask them why and if you don't get the answer you like try to get another opinion. It seems other people on the board have had some good luck with agressive surgeons. If it's two deep then I pray there are other options for you. It seems crazy to get this far and not be able to do something.
My husband and I know how it is to be going through this crazy stressful time with little children so try to keep holding on to hope that these doctors will help you turn this around. Hug your little one, it will make you feel better.
Rebecca
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- April 17, 2012 at 11:16 pm
Lisa,
I agree, you need answers. Ask them why and if you don't get the answer you like try to get another opinion. It seems other people on the board have had some good luck with agressive surgeons. If it's two deep then I pray there are other options for you. It seems crazy to get this far and not be able to do something.
My husband and I know how it is to be going through this crazy stressful time with little children so try to keep holding on to hope that these doctors will help you turn this around. Hug your little one, it will make you feel better.
Rebecca
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- April 18, 2012 at 12:10 am
Lisa, So sorry. I usually don't say things like this but nothing to say but …this just sucks! You never say much about who else you have helping you fight this battle. Do you have another person as strong as you to help push the docs? I know they need a little prodding every now and then.
You probably know as well as most the other options available. Unfortunately many of them would require you to get yourself to the States and would be costly for you. I forget how long you have been on Ippi but it seems like a fairly long time, it should be working by now. If you are still on the trial than they haven't removed the tumor because they need something by which to judge the effectiveness of the drug. If you leave the trial, you MAY be able to have the tumor zapped.
Try to find some way to cope until you can talk with the docs. Bring an advocate. Report back.
We all love you here and are praying or sending good vibes or whatever anyone else does to try to help.
Mary
Stage 3
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- April 18, 2012 at 12:10 am
Lisa, So sorry. I usually don't say things like this but nothing to say but …this just sucks! You never say much about who else you have helping you fight this battle. Do you have another person as strong as you to help push the docs? I know they need a little prodding every now and then.
You probably know as well as most the other options available. Unfortunately many of them would require you to get yourself to the States and would be costly for you. I forget how long you have been on Ippi but it seems like a fairly long time, it should be working by now. If you are still on the trial than they haven't removed the tumor because they need something by which to judge the effectiveness of the drug. If you leave the trial, you MAY be able to have the tumor zapped.
Try to find some way to cope until you can talk with the docs. Bring an advocate. Report back.
We all love you here and are praying or sending good vibes or whatever anyone else does to try to help.
Mary
Stage 3
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- April 18, 2012 at 12:10 am
Lisa, So sorry. I usually don't say things like this but nothing to say but …this just sucks! You never say much about who else you have helping you fight this battle. Do you have another person as strong as you to help push the docs? I know they need a little prodding every now and then.
You probably know as well as most the other options available. Unfortunately many of them would require you to get yourself to the States and would be costly for you. I forget how long you have been on Ippi but it seems like a fairly long time, it should be working by now. If you are still on the trial than they haven't removed the tumor because they need something by which to judge the effectiveness of the drug. If you leave the trial, you MAY be able to have the tumor zapped.
Try to find some way to cope until you can talk with the docs. Bring an advocate. Report back.
We all love you here and are praying or sending good vibes or whatever anyone else does to try to help.
Mary
Stage 3
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- April 18, 2012 at 12:13 am
Lisa,
I also don't understand without explaination why they can't do a crainectomy! They kept telling you that tumor was in a safe place. I know originally I was told no because mine was so deep, I made the decision after the edema. Ask them for the explaination!
Maybe after you speak to your oncologist he will also speak to the rest of the team. Have you spoken to the nuerologist also?
Linda
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- April 18, 2012 at 12:13 am
Lisa,
I also don't understand without explaination why they can't do a crainectomy! They kept telling you that tumor was in a safe place. I know originally I was told no because mine was so deep, I made the decision after the edema. Ask them for the explaination!
Maybe after you speak to your oncologist he will also speak to the rest of the team. Have you spoken to the nuerologist also?
Linda
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- April 18, 2012 at 1:23 am
I think they can do some radiation again, but they just think I’m going to get more and reall want me to do whole brain radiation. How can they assume I’ll get more?Linda – they said they wer’nt sure they could do surgery cause I was in a deep space even though I’m in a good spot. They also said surgery would be tricky.
I see everyone this week, so I’ll let you know.
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- April 18, 2012 at 1:23 am
I think they can do some radiation again, but they just think I’m going to get more and reall want me to do whole brain radiation. How can they assume I’ll get more?Linda – they said they wer’nt sure they could do surgery cause I was in a deep space even though I’m in a good spot. They also said surgery would be tricky.
I see everyone this week, so I’ll let you know.
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- April 18, 2012 at 1:23 am
I think they can do some radiation again, but they just think I’m going to get more and reall want me to do whole brain radiation. How can they assume I’ll get more?Linda – they said they wer’nt sure they could do surgery cause I was in a deep space even though I’m in a good spot. They also said surgery would be tricky.
I see everyone this week, so I’ll let you know.
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- April 18, 2012 at 12:13 am
Lisa,
I also don't understand without explaination why they can't do a crainectomy! They kept telling you that tumor was in a safe place. I know originally I was told no because mine was so deep, I made the decision after the edema. Ask them for the explaination!
Maybe after you speak to your oncologist he will also speak to the rest of the team. Have you spoken to the nuerologist also?
Linda
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- April 18, 2012 at 5:10 am
I'm sorry you're going through this.
I hope your docs can give you confidence that they're truly distinguishing between radiation effect/edema vs. new tumor growth. My docs at UCSF have had to do special follow-up MRI studies beyond the normal MRIs to be able to do this for me. And we've both had IPI which apparently results in more edema/treatment effect, on average, per two different neuro docs at Yale.
My docs have been having a hard time telling whether my brain mets are growing back, or if it's radiation effect, from standard MRIs alone. The last 2 I had, they ended up ordering a follow-up MRI each time with a special "perfusion" study in the small brain area they were unsure about. That study runs dye through the brain for about 15 seconds, and while that's happening they do a special scan in one small part of the brain for that 15 seconds. The study lets them see if there's blood vessel growth in that area. No blood vessel growth means more consistent with radiation effect than new tumor growth.
Without that study, it seems like they really couldn't tell the difference between radiation effect and new tumor growth. I wonder if that's the situation your docs are in. So far for me it's come back both times as more consistent with radiation effect (edema/inflammation). And in at least one case for me, the 'radiation effect' had become larger than the original tumor.
Last year my sister emailed a doc at the Yale Brain Tumor Center who had published a study on IPI and brain mets in 2011. He replied back in part, "Our patients were treated on a variety of trials, some at 10mg/kg and some at 3mg/kg, approximately half and half… We've seen some good outcomes with brain mets at either dose (as well as some bad edema, as you well know)."
So I wonder if your docs are using the same tools (MRI studies with perfusion) that my docs are, to help them tell the difference.
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- April 18, 2012 at 5:10 am
I'm sorry you're going through this.
I hope your docs can give you confidence that they're truly distinguishing between radiation effect/edema vs. new tumor growth. My docs at UCSF have had to do special follow-up MRI studies beyond the normal MRIs to be able to do this for me. And we've both had IPI which apparently results in more edema/treatment effect, on average, per two different neuro docs at Yale.
My docs have been having a hard time telling whether my brain mets are growing back, or if it's radiation effect, from standard MRIs alone. The last 2 I had, they ended up ordering a follow-up MRI each time with a special "perfusion" study in the small brain area they were unsure about. That study runs dye through the brain for about 15 seconds, and while that's happening they do a special scan in one small part of the brain for that 15 seconds. The study lets them see if there's blood vessel growth in that area. No blood vessel growth means more consistent with radiation effect than new tumor growth.
Without that study, it seems like they really couldn't tell the difference between radiation effect and new tumor growth. I wonder if that's the situation your docs are in. So far for me it's come back both times as more consistent with radiation effect (edema/inflammation). And in at least one case for me, the 'radiation effect' had become larger than the original tumor.
Last year my sister emailed a doc at the Yale Brain Tumor Center who had published a study on IPI and brain mets in 2011. He replied back in part, "Our patients were treated on a variety of trials, some at 10mg/kg and some at 3mg/kg, approximately half and half… We've seen some good outcomes with brain mets at either dose (as well as some bad edema, as you well know)."
So I wonder if your docs are using the same tools (MRI studies with perfusion) that my docs are, to help them tell the difference.
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- April 18, 2012 at 5:10 am
I'm sorry you're going through this.
I hope your docs can give you confidence that they're truly distinguishing between radiation effect/edema vs. new tumor growth. My docs at UCSF have had to do special follow-up MRI studies beyond the normal MRIs to be able to do this for me. And we've both had IPI which apparently results in more edema/treatment effect, on average, per two different neuro docs at Yale.
My docs have been having a hard time telling whether my brain mets are growing back, or if it's radiation effect, from standard MRIs alone. The last 2 I had, they ended up ordering a follow-up MRI each time with a special "perfusion" study in the small brain area they were unsure about. That study runs dye through the brain for about 15 seconds, and while that's happening they do a special scan in one small part of the brain for that 15 seconds. The study lets them see if there's blood vessel growth in that area. No blood vessel growth means more consistent with radiation effect than new tumor growth.
Without that study, it seems like they really couldn't tell the difference between radiation effect and new tumor growth. I wonder if that's the situation your docs are in. So far for me it's come back both times as more consistent with radiation effect (edema/inflammation). And in at least one case for me, the 'radiation effect' had become larger than the original tumor.
Last year my sister emailed a doc at the Yale Brain Tumor Center who had published a study on IPI and brain mets in 2011. He replied back in part, "Our patients were treated on a variety of trials, some at 10mg/kg and some at 3mg/kg, approximately half and half… We've seen some good outcomes with brain mets at either dose (as well as some bad edema, as you well know)."
So I wonder if your docs are using the same tools (MRI studies with perfusion) that my docs are, to help them tell the difference.
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- April 18, 2012 at 12:33 pm
Lisa, have you seen a neuro-oncologist? I made sure to see one after an MRI showed a spot on my brain. I got copies of all my records and made an appointment. He's become an integral part of my care. I have the utmost faith in my melanoma onc but dealing with the brain can be a whole different ball of wax. One way or the other it sounds like you need to get some answers. Be firm and have a knowledgeable person with you.
All the best to you
FrankD Brooklyn
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- April 18, 2012 at 12:33 pm
Lisa, have you seen a neuro-oncologist? I made sure to see one after an MRI showed a spot on my brain. I got copies of all my records and made an appointment. He's become an integral part of my care. I have the utmost faith in my melanoma onc but dealing with the brain can be a whole different ball of wax. One way or the other it sounds like you need to get some answers. Be firm and have a knowledgeable person with you.
All the best to you
FrankD Brooklyn
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- April 18, 2012 at 12:33 pm
Lisa, have you seen a neuro-oncologist? I made sure to see one after an MRI showed a spot on my brain. I got copies of all my records and made an appointment. He's become an integral part of my care. I have the utmost faith in my melanoma onc but dealing with the brain can be a whole different ball of wax. One way or the other it sounds like you need to get some answers. Be firm and have a knowledgeable person with you.
All the best to you
FrankD Brooklyn
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- April 18, 2012 at 12:34 pm
Lisa, have you seen a neuro-oncologist? I made sure to see one after an MRI showed a spot on my brain. I got copies of all my records and made an appointment. He's become an integral part of my care. I have the utmost faith in my melanoma onc but dealing with the brain can be a whole different ball of wax. One way or the other it sounds like you need to get some answers. Be firm and have a knowledgeable person with you.
All the best to you
FrankD Brooklyn
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- April 18, 2012 at 12:34 pm
Lisa, have you seen a neuro-oncologist? I made sure to see one after an MRI showed a spot on my brain. I got copies of all my records and made an appointment. He's become an integral part of my care. I have the utmost faith in my melanoma onc but dealing with the brain can be a whole different ball of wax. One way or the other it sounds like you need to get some answers. Be firm and have a knowledgeable person with you.
All the best to you
FrankD Brooklyn
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- April 18, 2012 at 3:39 pm
LIsa,
If WBR is what they want to try I just want to let you know I had it early on since my first MRI showed manty small mets in my brain. I had 3 weeks of WBR.it is completely painless. I had the M to F treatments for 14 days. They are quick, in and out in like 3 minutes. Side effects for me were lost head hair, lost arm pit hair ( a plus as far as I am concerned) I received a fore head burn which altered the pigment of my skin color. I had some fatigue for few weeks following but could also have a result of the IPI or disease progression, not sure. I was able to get up, shower and dress everyday. I must also let you know the WBR not seem to work. I have had Proton treatments to the 2 larger lesions which was 11 weeks ago. JUst had a second MRI to see those 2 coninue to shrink. i am also back on iPI like you number 2 tomorrow. i continue with Zelboraf also. I don't know if this will work but I am willing to try, I mostly want you to know I just turned 51 so I am older than you and made it through WBR fine.If they insist you need to try this, I know how scary it can be, no gurantees offered but who knows what will and will not work for each individual. try not to give in to the panic. I havebeen told a few times we can't do anything else and yet here I am swinging away. diagnosed stage 4 July 23rd, 2011 with lung, liver and brain mets.
hugs and strength to you in your battle.
Kathy D
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- April 18, 2012 at 3:39 pm
LIsa,
If WBR is what they want to try I just want to let you know I had it early on since my first MRI showed manty small mets in my brain. I had 3 weeks of WBR.it is completely painless. I had the M to F treatments for 14 days. They are quick, in and out in like 3 minutes. Side effects for me were lost head hair, lost arm pit hair ( a plus as far as I am concerned) I received a fore head burn which altered the pigment of my skin color. I had some fatigue for few weeks following but could also have a result of the IPI or disease progression, not sure. I was able to get up, shower and dress everyday. I must also let you know the WBR not seem to work. I have had Proton treatments to the 2 larger lesions which was 11 weeks ago. JUst had a second MRI to see those 2 coninue to shrink. i am also back on iPI like you number 2 tomorrow. i continue with Zelboraf also. I don't know if this will work but I am willing to try, I mostly want you to know I just turned 51 so I am older than you and made it through WBR fine.If they insist you need to try this, I know how scary it can be, no gurantees offered but who knows what will and will not work for each individual. try not to give in to the panic. I havebeen told a few times we can't do anything else and yet here I am swinging away. diagnosed stage 4 July 23rd, 2011 with lung, liver and brain mets.
hugs and strength to you in your battle.
Kathy D
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- April 20, 2012 at 2:53 am
Kathy, you broght up an interesting subject that I have wondered about for a couple of years and not seen mentioned anywhere. With the failure of normal radiation to have great effect on most melanoma tumors, and often casing major problems to healhy tissue in the body, I have wondered about the effect of Proton radiation therapy on melanomas. i understand that the surrounding tissues suffer much less problems with proton therapy. Please keep me informed as to the results and side effects of the proton therapy. It would appear to me to possibly be one of the best approaches for one with a small number of tumors that are in a bad location to cut into. This is the first report I have read of use of the proton therapy on melonoma tumors.
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- April 20, 2012 at 2:53 am
Kathy, you broght up an interesting subject that I have wondered about for a couple of years and not seen mentioned anywhere. With the failure of normal radiation to have great effect on most melanoma tumors, and often casing major problems to healhy tissue in the body, I have wondered about the effect of Proton radiation therapy on melanomas. i understand that the surrounding tissues suffer much less problems with proton therapy. Please keep me informed as to the results and side effects of the proton therapy. It would appear to me to possibly be one of the best approaches for one with a small number of tumors that are in a bad location to cut into. This is the first report I have read of use of the proton therapy on melonoma tumors.
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- April 20, 2012 at 2:53 am
Kathy, you broght up an interesting subject that I have wondered about for a couple of years and not seen mentioned anywhere. With the failure of normal radiation to have great effect on most melanoma tumors, and often casing major problems to healhy tissue in the body, I have wondered about the effect of Proton radiation therapy on melanomas. i understand that the surrounding tissues suffer much less problems with proton therapy. Please keep me informed as to the results and side effects of the proton therapy. It would appear to me to possibly be one of the best approaches for one with a small number of tumors that are in a bad location to cut into. This is the first report I have read of use of the proton therapy on melonoma tumors.
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- April 18, 2012 at 3:39 pm
LIsa,
If WBR is what they want to try I just want to let you know I had it early on since my first MRI showed manty small mets in my brain. I had 3 weeks of WBR.it is completely painless. I had the M to F treatments for 14 days. They are quick, in and out in like 3 minutes. Side effects for me were lost head hair, lost arm pit hair ( a plus as far as I am concerned) I received a fore head burn which altered the pigment of my skin color. I had some fatigue for few weeks following but could also have a result of the IPI or disease progression, not sure. I was able to get up, shower and dress everyday. I must also let you know the WBR not seem to work. I have had Proton treatments to the 2 larger lesions which was 11 weeks ago. JUst had a second MRI to see those 2 coninue to shrink. i am also back on iPI like you number 2 tomorrow. i continue with Zelboraf also. I don't know if this will work but I am willing to try, I mostly want you to know I just turned 51 so I am older than you and made it through WBR fine.If they insist you need to try this, I know how scary it can be, no gurantees offered but who knows what will and will not work for each individual. try not to give in to the panic. I havebeen told a few times we can't do anything else and yet here I am swinging away. diagnosed stage 4 July 23rd, 2011 with lung, liver and brain mets.
hugs and strength to you in your battle.
Kathy D
-
- April 18, 2012 at 12:34 pm
Lisa, have you seen a neuro-oncologist? I made sure to see one after an MRI showed a spot on my brain. I got copies of all my records and made an appointment. He's become an integral part of my care. I have the utmost faith in my melanoma onc but dealing with the brain can be a whole different ball of wax. One way or the other it sounds like you need to get some answers. Be firm and have a knowledgeable person with you.
All the best to you
FrankD Brooklyn
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- April 18, 2012 at 5:05 pm
Hi Lisa,
i am sure you are freaking out… big hugs… high hopes for you..
Call Fred Eichorn… http://www.ncfr.org…. 631-584-3100 believe in miracles… they happen… they will talk to you for
an extended amount of time… they are amazing people… just call.. please…
miracles happen there daily…
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- April 18, 2012 at 5:05 pm
Hi Lisa,
i am sure you are freaking out… big hugs… high hopes for you..
Call Fred Eichorn… http://www.ncfr.org…. 631-584-3100 believe in miracles… they happen… they will talk to you for
an extended amount of time… they are amazing people… just call.. please…
miracles happen there daily…
-
- April 18, 2012 at 5:05 pm
Hi Lisa,
i am sure you are freaking out… big hugs… high hopes for you..
Call Fred Eichorn… http://www.ncfr.org…. 631-584-3100 believe in miracles… they happen… they will talk to you for
an extended amount of time… they are amazing people… just call.. please…
miracles happen there daily…
-
- April 18, 2012 at 10:27 pm
Have they discussed Zelboraf with you as an option. It is a new chemo drug just approved for melanoma in Aug 2011. My husband just started on it a few weeks ago. He has has 2 spots on his brain so far. The 1st was resected but this 1 is inoperative. Wishing u the best of luck and remember not to give up. Sometimes you need to find drs willing to try new things. As my husband I discussed, what do u have to lose by trying?
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- April 18, 2012 at 10:27 pm
Have they discussed Zelboraf with you as an option. It is a new chemo drug just approved for melanoma in Aug 2011. My husband just started on it a few weeks ago. He has has 2 spots on his brain so far. The 1st was resected but this 1 is inoperative. Wishing u the best of luck and remember not to give up. Sometimes you need to find drs willing to try new things. As my husband I discussed, what do u have to lose by trying?
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- April 18, 2012 at 10:27 pm
Have they discussed Zelboraf with you as an option. It is a new chemo drug just approved for melanoma in Aug 2011. My husband just started on it a few weeks ago. He has has 2 spots on his brain so far. The 1st was resected but this 1 is inoperative. Wishing u the best of luck and remember not to give up. Sometimes you need to find drs willing to try new things. As my husband I discussed, what do u have to lose by trying?
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- April 18, 2012 at 11:06 pm
I don’t qualify for the Zelboraf, so I’ve been on ipi I’m on my final ipi which I hope does good things for me.I have 2 tumours – 1 from from November which has grown, plus I just got another one. . I just want to figure out this tumor so we can figure out to do. They said it was. too big for gamma knife and is in a difficult area for surgery. After Friday, we’ll figure it out”.
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- April 18, 2012 at 11:06 pm
I don’t qualify for the Zelboraf, so I’ve been on ipi I’m on my final ipi which I hope does good things for me.I have 2 tumours – 1 from from November which has grown, plus I just got another one. . I just want to figure out this tumor so we can figure out to do. They said it was. too big for gamma knife and is in a difficult area for surgery. After Friday, we’ll figure it out”.
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- April 18, 2012 at 11:06 pm
I don’t qualify for the Zelboraf, so I’ve been on ipi I’m on my final ipi which I hope does good things for me.I have 2 tumours – 1 from from November which has grown, plus I just got another one. . I just want to figure out this tumor so we can figure out to do. They said it was. too big for gamma knife and is in a difficult area for surgery. After Friday, we’ll figure it out”.
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- April 20, 2012 at 10:11 am
Lisa, I am sorry to read that Yervoy appears to be losing its effectiveness. Perhaps IL-2 (interleukin-2) should be seriously considered now? I remember reading that IL-2 after Yervoy can make a good combination.
Hope this helps
Frank from Australia
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- April 20, 2012 at 10:11 am
Lisa, I am sorry to read that Yervoy appears to be losing its effectiveness. Perhaps IL-2 (interleukin-2) should be seriously considered now? I remember reading that IL-2 after Yervoy can make a good combination.
Hope this helps
Frank from Australia
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- April 20, 2012 at 10:11 am
Lisa, I am sorry to read that Yervoy appears to be losing its effectiveness. Perhaps IL-2 (interleukin-2) should be seriously considered now? I remember reading that IL-2 after Yervoy can make a good combination.
Hope this helps
Frank from Australia
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- April 20, 2012 at 8:29 pm
So far, in have no deal that ipi is losing it’s effect. My absolute lymphosyed are still 1700′ but of course I’ve always had good lymphocytes”. As my dr. s aid, we need to continue and wait as it’s too early.I found today that there is no options except whole brain. I have 1 being gamma. knifed on tuesady, but the large one I’ve had since novemer has started to grow. It’s had more blood and the blood is bigger which is not allowing to gamma knife or have surgery. It could shrink if I believe in ipi and will glet this done in 2. weeks. Apparently, it’s moving very slow. I just don’t know why this happened. Many people have had brain mets shrinking, so I still keep hoe cause it’s possible, Thank God I feel I have nothing wronging with ne.
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- April 20, 2012 at 8:29 pm
So far, in have no deal that ipi is losing it’s effect. My absolute lymphosyed are still 1700′ but of course I’ve always had good lymphocytes”. As my dr. s aid, we need to continue and wait as it’s too early.I found today that there is no options except whole brain. I have 1 being gamma. knifed on tuesady, but the large one I’ve had since novemer has started to grow. It’s had more blood and the blood is bigger which is not allowing to gamma knife or have surgery. It could shrink if I believe in ipi and will glet this done in 2. weeks. Apparently, it’s moving very slow. I just don’t know why this happened. Many people have had brain mets shrinking, so I still keep hoe cause it’s possible, Thank God I feel I have nothing wronging with ne.
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- April 21, 2012 at 3:20 am
Lisa, to answer your initial question as to why this is happening I think that it has to do with the way that melanoma tries to overcome one's immune response. Yervoy works by acting on the immune system in a very specific way, and it is able to keep many cases of melanoma under control.
However, in some cases melanoma is able to actively bypass the efforts of the immune system to keep tumours from growing. This is why I feel that another systemic treatment (acting on the immune system) such as IL-2 (interleukin-2) or an anti-PD1 trial will be needed soon to help the immune system to deal with the new challenges that melanoma is presenting. Both IL-2 and anti-PD1 have some potential in being curative, rather than just being palliative.
Take care
Frank from Australia
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- April 21, 2012 at 3:20 am
Lisa, to answer your initial question as to why this is happening I think that it has to do with the way that melanoma tries to overcome one's immune response. Yervoy works by acting on the immune system in a very specific way, and it is able to keep many cases of melanoma under control.
However, in some cases melanoma is able to actively bypass the efforts of the immune system to keep tumours from growing. This is why I feel that another systemic treatment (acting on the immune system) such as IL-2 (interleukin-2) or an anti-PD1 trial will be needed soon to help the immune system to deal with the new challenges that melanoma is presenting. Both IL-2 and anti-PD1 have some potential in being curative, rather than just being palliative.
Take care
Frank from Australia
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- April 21, 2012 at 3:20 am
Lisa, to answer your initial question as to why this is happening I think that it has to do with the way that melanoma tries to overcome one's immune response. Yervoy works by acting on the immune system in a very specific way, and it is able to keep many cases of melanoma under control.
However, in some cases melanoma is able to actively bypass the efforts of the immune system to keep tumours from growing. This is why I feel that another systemic treatment (acting on the immune system) such as IL-2 (interleukin-2) or an anti-PD1 trial will be needed soon to help the immune system to deal with the new challenges that melanoma is presenting. Both IL-2 and anti-PD1 have some potential in being curative, rather than just being palliative.
Take care
Frank from Australia
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- April 23, 2012 at 1:45 am
Lisa, I hope IPI is doing it's job for you through all this. I'm pulling for you.
Your ALC still high, sounds good. Your doc says it's too early, to continue and wait. That sounds hopeful too. Growing slow sounds hopeful. Radiation and IPI together too.Good luck on Tuesday with the Gamma Knife and the scan. -
- April 23, 2012 at 1:45 am
Lisa, I hope IPI is doing it's job for you through all this. I'm pulling for you.
Your ALC still high, sounds good. Your doc says it's too early, to continue and wait. That sounds hopeful too. Growing slow sounds hopeful. Radiation and IPI together too.Good luck on Tuesday with the Gamma Knife and the scan. -
- April 23, 2012 at 1:45 am
Lisa, I hope IPI is doing it's job for you through all this. I'm pulling for you.
Your ALC still high, sounds good. Your doc says it's too early, to continue and wait. That sounds hopeful too. Growing slow sounds hopeful. Radiation and IPI together too.Good luck on Tuesday with the Gamma Knife and the scan. -
- April 20, 2012 at 8:29 pm
So far, in have no deal that ipi is losing it’s effect. My absolute lymphosyed are still 1700′ but of course I’ve always had good lymphocytes”. As my dr. s aid, we need to continue and wait as it’s too early.I found today that there is no options except whole brain. I have 1 being gamma. knifed on tuesady, but the large one I’ve had since novemer has started to grow. It’s had more blood and the blood is bigger which is not allowing to gamma knife or have surgery. It could shrink if I believe in ipi and will glet this done in 2. weeks. Apparently, it’s moving very slow. I just don’t know why this happened. Many people have had brain mets shrinking, so I still keep hoe cause it’s possible, Thank God I feel I have nothing wronging with ne.
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- April 23, 2012 at 2:19 am
Lisa, I'm SO sorry to hear of the continued brain tumor problems, if they recommend the WBR, go for it, especially with the one that continues growing. I know they like to get the smaller ones with the Gamma KNife and the brain tumors do have to be in a good spot for them to go into the brain via surgery, otherwise you'd end up with other life altering side effects that we don't want to even talk about.
I agree on the IL-2 or the Anti PD1, as someone else on the board here told me the same thing, that one of those two after successful Yervoy (shrinking your other tumors) can be a double dose of medicine for the tumors, and especially this stupid brain tumors.
I don't know what else to say, I know there's no comfort any of us can give with this hell you are going thru right now with the brain tumors. I missed other posts, but who is handling your brain tumor treatments, a neurosurgeon or a regular Melanoma doctor? Make sure it's a neurosurgeon of course if it isn't already. I think the IL-2 as well shows quick effects, like after so many doses, they can re-scan you to see if there is shrinkage, I don't think it takes months of it to show shrinkage if it works.
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- April 23, 2012 at 2:19 am
Lisa, I'm SO sorry to hear of the continued brain tumor problems, if they recommend the WBR, go for it, especially with the one that continues growing. I know they like to get the smaller ones with the Gamma KNife and the brain tumors do have to be in a good spot for them to go into the brain via surgery, otherwise you'd end up with other life altering side effects that we don't want to even talk about.
I agree on the IL-2 or the Anti PD1, as someone else on the board here told me the same thing, that one of those two after successful Yervoy (shrinking your other tumors) can be a double dose of medicine for the tumors, and especially this stupid brain tumors.
I don't know what else to say, I know there's no comfort any of us can give with this hell you are going thru right now with the brain tumors. I missed other posts, but who is handling your brain tumor treatments, a neurosurgeon or a regular Melanoma doctor? Make sure it's a neurosurgeon of course if it isn't already. I think the IL-2 as well shows quick effects, like after so many doses, they can re-scan you to see if there is shrinkage, I don't think it takes months of it to show shrinkage if it works.
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- April 23, 2012 at 12:28 pm
Hi Jackie,The problem is, there is so much blood, so that they can’t see anything. This makes it difficult with possible WBR when I only have 1.
Today I go and get my MRI and my gamma tomorrow. On Friday, believe or not,we’re going to Florida. Whatever is growing is growing very slow and they suggested some of the blood may disappear. We’ll know everything in 10 days. If it was a smaller tumour, we could gamma.
I have the best neurosurgeon in Canada makes me Feel good. I also learned that whole brain s different in canada and not as strong. Would’t it be great if it was shrinking? I just had my last ipi and strong absolute lymphocyte, so we’ll see.
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- April 23, 2012 at 12:28 pm
Hi Jackie,The problem is, there is so much blood, so that they can’t see anything. This makes it difficult with possible WBR when I only have 1.
Today I go and get my MRI and my gamma tomorrow. On Friday, believe or not,we’re going to Florida. Whatever is growing is growing very slow and they suggested some of the blood may disappear. We’ll know everything in 10 days. If it was a smaller tumour, we could gamma.
I have the best neurosurgeon in Canada makes me Feel good. I also learned that whole brain s different in canada and not as strong. Would’t it be great if it was shrinking? I just had my last ipi and strong absolute lymphocyte, so we’ll see.
-
- April 23, 2012 at 12:28 pm
Hi Jackie,The problem is, there is so much blood, so that they can’t see anything. This makes it difficult with possible WBR when I only have 1.
Today I go and get my MRI and my gamma tomorrow. On Friday, believe or not,we’re going to Florida. Whatever is growing is growing very slow and they suggested some of the blood may disappear. We’ll know everything in 10 days. If it was a smaller tumour, we could gamma.
I have the best neurosurgeon in Canada makes me Feel good. I also learned that whole brain s different in canada and not as strong. Would’t it be great if it was shrinking? I just had my last ipi and strong absolute lymphocyte, so we’ll see.
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- April 23, 2012 at 10:09 pm
Ok, just be very careful if you are flying, when I had my large brain tumor in June 2011 (before I knew I had a brain tumor or Melanoma), I threw up on every flight I had (like 5 of them) and thought "this is weird", and then passed out for an entire day after flying one time. So, just make sure you're prepared, incase the brain isn't too fond of the flying!!
hopefully that blood will disappear so they can Gamma Knife it, I myself want to avoid Whole Brain as long as possible at some point, much rather do Gamma Knife (never had any side effects from that).
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- April 23, 2012 at 10:09 pm
Ok, just be very careful if you are flying, when I had my large brain tumor in June 2011 (before I knew I had a brain tumor or Melanoma), I threw up on every flight I had (like 5 of them) and thought "this is weird", and then passed out for an entire day after flying one time. So, just make sure you're prepared, incase the brain isn't too fond of the flying!!
hopefully that blood will disappear so they can Gamma Knife it, I myself want to avoid Whole Brain as long as possible at some point, much rather do Gamma Knife (never had any side effects from that).
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- April 23, 2012 at 10:09 pm
Ok, just be very careful if you are flying, when I had my large brain tumor in June 2011 (before I knew I had a brain tumor or Melanoma), I threw up on every flight I had (like 5 of them) and thought "this is weird", and then passed out for an entire day after flying one time. So, just make sure you're prepared, incase the brain isn't too fond of the flying!!
hopefully that blood will disappear so they can Gamma Knife it, I myself want to avoid Whole Brain as long as possible at some point, much rather do Gamma Knife (never had any side effects from that).
-
- April 23, 2012 at 2:19 am
Lisa, I'm SO sorry to hear of the continued brain tumor problems, if they recommend the WBR, go for it, especially with the one that continues growing. I know they like to get the smaller ones with the Gamma KNife and the brain tumors do have to be in a good spot for them to go into the brain via surgery, otherwise you'd end up with other life altering side effects that we don't want to even talk about.
I agree on the IL-2 or the Anti PD1, as someone else on the board here told me the same thing, that one of those two after successful Yervoy (shrinking your other tumors) can be a double dose of medicine for the tumors, and especially this stupid brain tumors.
I don't know what else to say, I know there's no comfort any of us can give with this hell you are going thru right now with the brain tumors. I missed other posts, but who is handling your brain tumor treatments, a neurosurgeon or a regular Melanoma doctor? Make sure it's a neurosurgeon of course if it isn't already. I think the IL-2 as well shows quick effects, like after so many doses, they can re-scan you to see if there is shrinkage, I don't think it takes months of it to show shrinkage if it works.
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