Wondering if I should be cancelling the WBR – pls brain peeps, chime in

I can't seem to find the piece of info I need, but is it true you can have WBR one time, and then never again in the future? I know this WBR scares me as to if that fact is true, I'd hate to use it now and then never be allowed to in the future again if more spots come back.  I have seen a few people who have used it and did great, like you said, and then others who didn't like it, or had reactions now or later, etc.

 

At my injection today, my doctor did tell me that they have shown this IPI to work on the brain and it can help manage those spots and shrink them if you continue on with the treatment.  I have no clue if it helps make them grow, but with this damn melanoma, like others have said, it loves the damn brain and that's where it goes.

 

I'm not a good advice giver, just giving my opinions on what I think I 'may' do if ever put in the same situation, I had alot of questions today for my doctor about future care, got some great answers, but I know the road will never be easy 🙁

 

Like I asked in the other question you posted, is there a reason they can't wait a few weeks to wait for the blood to clear from the other one? My smaller tumor bled, but I don't think it was over top of itself, but I waited a month after my original craniotomy to even get Gamma Knife, it was the size of a quarter, is it that bad to leave that one in there and let it grow a bit if it does, and see if Gamma Knife can take care of it? 

I know nothing much about the WBR or the SRS people have had too, so I don't know why they'd prefer one over the other, did they not mention the SRS?

I can't seem to find the piece of info I need, but is it true you can have WBR one time, and then never again in the future? I know this WBR scares me as to if that fact is true, I'd hate to use it now and then never be allowed to in the future again if more spots come back.  I have seen a few people who have used it and did great, like you said, and then others who didn't like it, or had reactions now or later, etc.

 

At my injection today, my doctor did tell me that they have shown this IPI to work on the brain and it can help manage those spots and shrink them if you continue on with the treatment.  I have no clue if it helps make them grow, but with this damn melanoma, like others have said, it loves the damn brain and that's where it goes.

 

I'm not a good advice giver, just giving my opinions on what I think I 'may' do if ever put in the same situation, I had alot of questions today for my doctor about future care, got some great answers, but I know the road will never be easy 🙁

 

Like I asked in the other question you posted, is there a reason they can't wait a few weeks to wait for the blood to clear from the other one? My smaller tumor bled, but I don't think it was over top of itself, but I waited a month after my original craniotomy to even get Gamma Knife, it was the size of a quarter, is it that bad to leave that one in there and let it grow a bit if it does, and see if Gamma Knife can take care of it? 

I know nothing much about the WBR or the SRS people have had too, so I don't know why they'd prefer one over the other, did they not mention the SRS?

I can't seem to find the piece of info I need, but is it true you can have WBR one time, and then never again in the future? I know this WBR scares me as to if that fact is true, I'd hate to use it now and then never be allowed to in the future again if more spots come back.  I have seen a few people who have used it and did great, like you said, and then others who didn't like it, or had reactions now or later, etc.

 

At my injection today, my doctor did tell me that they have shown this IPI to work on the brain and it can help manage those spots and shrink them if you continue on with the treatment.  I have no clue if it helps make them grow, but with this damn melanoma, like others have said, it loves the damn brain and that's where it goes.

 

I'm not a good advice giver, just giving my opinions on what I think I 'may' do if ever put in the same situation, I had alot of questions today for my doctor about future care, got some great answers, but I know the road will never be easy 🙁

 

Like I asked in the other question you posted, is there a reason they can't wait a few weeks to wait for the blood to clear from the other one? My smaller tumor bled, but I don't think it was over top of itself, but I waited a month after my original craniotomy to even get Gamma Knife, it was the size of a quarter, is it that bad to leave that one in there and let it grow a bit if it does, and see if Gamma Knife can take care of it? 

I know nothing much about the WBR or the SRS people have had too, so I don't know why they'd prefer one over the other, did they not mention the SRS?

Lisa, I have just been reading your latest news and am really concerned to see that your scan results have mentioned brain mets.

My overall impression of radiation treatment for melanoma in general is that it is palliative, rather than attempting to be curative. Of course, there could be exceptions to this but I think that this is normally the case.

I wonder if you would be eligible for TIL treatment (adoptive cell therapy)? If you are, then I think that this would be worth serious consideration.

Take care

Frank from Australia

Lisa, I have just been reading your latest news and am really concerned to see that your scan results have mentioned brain mets.

My overall impression of radiation treatment for melanoma in general is that it is palliative, rather than attempting to be curative. Of course, there could be exceptions to this but I think that this is normally the case.

I wonder if you would be eligible for TIL treatment (adoptive cell therapy)? If you are, then I think that this would be worth serious consideration.

Take care

Frank from Australia

Lisa, I have just been reading your latest news and am really concerned to see that your scan results have mentioned brain mets.

My overall impression of radiation treatment for melanoma in general is that it is palliative, rather than attempting to be curative. Of course, there could be exceptions to this but I think that this is normally the case.

I wonder if you would be eligible for TIL treatment (adoptive cell therapy)? If you are, then I think that this would be worth serious consideration.

Take care

Frank from Australia

Lisa. You know by now in your melanoma fight, there are no right/wrong answers and there are NO guarantees in the terms of treatment choice. Some feel gamma knife is better if you have a few tumors, others think that you should do WBR to hopefully stabilize the brain and be able to move on to other treatment. My husband decided on WBR after his craniotomy because his surgical cavity was large and he had two other small spots in other areas of his brain, so we knew there were also micro cells floating around. We went to Boston and the radiation oncologist recommended WBR in my husband’s case and two others agreed. We are interested in adoptive cell transfer so wanted to stabilize the brain ASAP, and have an appointment at MD Anderson next week. Also, my husband hated being on steroids before his craniotomy and was so happy when he weaned off them a week after surgery. He has not needed steroids during his WBR treatment, and he just plain feels better, PERSONAL CHOICE! Lots to consider, but you just need to go with your gut, and look ahead with confidence in whatever decision you make, none of us has a crystal ball, we are all doing the best we can! Good luck to you, Valerie (phil’s wife)

Lisa. You know by now in your melanoma fight, there are no right/wrong answers and there are NO guarantees in the terms of treatment choice. Some feel gamma knife is better if you have a few tumors, others think that you should do WBR to hopefully stabilize the brain and be able to move on to other treatment. My husband decided on WBR after his craniotomy because his surgical cavity was large and he had two other small spots in other areas of his brain, so we knew there were also micro cells floating around. We went to Boston and the radiation oncologist recommended WBR in my husband’s case and two others agreed. We are interested in adoptive cell transfer so wanted to stabilize the brain ASAP, and have an appointment at MD Anderson next week. Also, my husband hated being on steroids before his craniotomy and was so happy when he weaned off them a week after surgery. He has not needed steroids during his WBR treatment, and he just plain feels better, PERSONAL CHOICE! Lots to consider, but you just need to go with your gut, and look ahead with confidence in whatever decision you make, none of us has a crystal ball, we are all doing the best we can! Good luck to you, Valerie (phil’s wife)

Lisa. You know by now in your melanoma fight, there are no right/wrong answers and there are NO guarantees in the terms of treatment choice. Some feel gamma knife is better if you have a few tumors, others think that you should do WBR to hopefully stabilize the brain and be able to move on to other treatment. My husband decided on WBR after his craniotomy because his surgical cavity was large and he had two other small spots in other areas of his brain, so we knew there were also micro cells floating around. We went to Boston and the radiation oncologist recommended WBR in my husband’s case and two others agreed. We are interested in adoptive cell transfer so wanted to stabilize the brain ASAP, and have an appointment at MD Anderson next week. Also, my husband hated being on steroids before his craniotomy and was so happy when he weaned off them a week after surgery. He has not needed steroids during his WBR treatment, and he just plain feels better, PERSONAL CHOICE! Lots to consider, but you just need to go with your gut, and look ahead with confidence in whatever decision you make, none of us has a crystal ball, we are all doing the best we can! Good luck to you, Valerie (phil’s wife)

Lisa – so sorry to her of this development. As some have said in reply, you have to make it your own choice – you won't get answers for you from statistics. But as Frank points out, and I concur, having done a ton of research on the brain  – radiation of any kind is typically palliative. What is worse, and I hope I'm wrong, but once you've had brain bleeding, you are ineligible for most, if not all, clinical trials. My wife was turned down at the key melanoma centers because of it. 

She has had lots of SRS treatment – gamma and cyber. She's getting ready for a course of WBR. Ever since her tumor burst and she had the bleeding the tumors pop up regularly. In hindsight, I might have been more aggressive about WBR earlier – rather than getting into a cycle of scan and zap. So my advice is to go for it – be aggressive  – the 20% of people who have WBR side effects (short term memory loss, inability to multi-task) are happy to deal with them if it buys them more time. 

Good luck with the decision and once you make it – press on!

Nick

Lisa – so sorry to her of this development. As some have said in reply, you have to make it your own choice – you won't get answers for you from statistics. But as Frank points out, and I concur, having done a ton of research on the brain  – radiation of any kind is typically palliative. What is worse, and I hope I'm wrong, but once you've had brain bleeding, you are ineligible for most, if not all, clinical trials. My wife was turned down at the key melanoma centers because of it. 

She has had lots of SRS treatment – gamma and cyber. She's getting ready for a course of WBR. Ever since her tumor burst and she had the bleeding the tumors pop up regularly. In hindsight, I might have been more aggressive about WBR earlier – rather than getting into a cycle of scan and zap. So my advice is to go for it – be aggressive  – the 20% of people who have WBR side effects (short term memory loss, inability to multi-task) are happy to deal with them if it buys them more time. 

Good luck with the decision and once you make it – press on!

Nick

Lisa – so sorry to her of this development. As some have said in reply, you have to make it your own choice – you won't get answers for you from statistics. But as Frank points out, and I concur, having done a ton of research on the brain  – radiation of any kind is typically palliative. What is worse, and I hope I'm wrong, but once you've had brain bleeding, you are ineligible for most, if not all, clinical trials. My wife was turned down at the key melanoma centers because of it. 

She has had lots of SRS treatment – gamma and cyber. She's getting ready for a course of WBR. Ever since her tumor burst and she had the bleeding the tumors pop up regularly. In hindsight, I might have been more aggressive about WBR earlier – rather than getting into a cycle of scan and zap. So my advice is to go for it – be aggressive  – the 20% of people who have WBR side effects (short term memory loss, inability to multi-task) are happy to deal with them if it buys them more time. 

Good luck with the decision and once you make it – press on!

Nick

Lisa,

I also went to the melanoma international site and also read the comments to you along with the comments that have been written here. 

One thing you have not commented  but I'm wondering if they put you on steroids because of the tumor bleeding to help it to stop.  

In the end it's your decision, however, you need to talk to another second opinion.   Right now you are totally overwhelmed.  Taking another day or two will give you a chance to stop and breathe as well as gather info from other sources.   I realize that you are from Canada and am thinking you don't have insurance to be done in the states. There are other places in Canada to ask for a second opinion.  

My numbers have been told differently to me. I was told that as long as I had just 1, possible 2 or 3 I was given a chance of 80% that this is successsful. I do realize that this means this particular tumor, not meaning what can still develop.  I was told that a crainectomy was 90% for that particular tumor. 

We talked to the same Doctors more than once.  We might hear ,what we are told ,but did not totally understand, we had to ask the same questions again.  Meet with these same Doctors again, this time have questions written.  Ask them to refer you for a second opinion.  It's melanoma information you need, not other types of cancer.  

My local oncologist advised me to have WBR. She is the only one that suggested this to me.  When doing some research I found that at many trials in the US there is a current trial where as long as there were 4 or less tumors you would be randomized between SRS or WBR.  This is in many major cancer hospitals – one is at MDA. Personally that trial got me sick to my stomach.  This is such a huge decision and to let a computer randomize which treatment you get!!!!!    To me each of us is an individual and each of our situation is different. 

With all melanoma trials/drugs there are no guarantees.  You need to go into the treatment knowing that you have gathered your information and feel this will be the right decision for you.  

Linda

Lisa,

I also went to the melanoma international site and also read the comments to you along with the comments that have been written here. 

One thing you have not commented  but I'm wondering if they put you on steroids because of the tumor bleeding to help it to stop.  

In the end it's your decision, however, you need to talk to another second opinion.   Right now you are totally overwhelmed.  Taking another day or two will give you a chance to stop and breathe as well as gather info from other sources.   I realize that you are from Canada and am thinking you don't have insurance to be done in the states. There are other places in Canada to ask for a second opinion.  

My numbers have been told differently to me. I was told that as long as I had just 1, possible 2 or 3 I was given a chance of 80% that this is successsful. I do realize that this means this particular tumor, not meaning what can still develop.  I was told that a crainectomy was 90% for that particular tumor. 

We talked to the same Doctors more than once.  We might hear ,what we are told ,but did not totally understand, we had to ask the same questions again.  Meet with these same Doctors again, this time have questions written.  Ask them to refer you for a second opinion.  It's melanoma information you need, not other types of cancer.  

My local oncologist advised me to have WBR. She is the only one that suggested this to me.  When doing some research I found that at many trials in the US there is a current trial where as long as there were 4 or less tumors you would be randomized between SRS or WBR.  This is in many major cancer hospitals – one is at MDA. Personally that trial got me sick to my stomach.  This is such a huge decision and to let a computer randomize which treatment you get!!!!!    To me each of us is an individual and each of our situation is different. 

With all melanoma trials/drugs there are no guarantees.  You need to go into the treatment knowing that you have gathered your information and feel this will be the right decision for you.  

Linda

Lisa,

I also went to the melanoma international site and also read the comments to you along with the comments that have been written here. 

One thing you have not commented  but I'm wondering if they put you on steroids because of the tumor bleeding to help it to stop.  

In the end it's your decision, however, you need to talk to another second opinion.   Right now you are totally overwhelmed.  Taking another day or two will give you a chance to stop and breathe as well as gather info from other sources.   I realize that you are from Canada and am thinking you don't have insurance to be done in the states. There are other places in Canada to ask for a second opinion.  

My numbers have been told differently to me. I was told that as long as I had just 1, possible 2 or 3 I was given a chance of 80% that this is successsful. I do realize that this means this particular tumor, not meaning what can still develop.  I was told that a crainectomy was 90% for that particular tumor. 

We talked to the same Doctors more than once.  We might hear ,what we are told ,but did not totally understand, we had to ask the same questions again.  Meet with these same Doctors again, this time have questions written.  Ask them to refer you for a second opinion.  It's melanoma information you need, not other types of cancer.  

My local oncologist advised me to have WBR. She is the only one that suggested this to me.  When doing some research I found that at many trials in the US there is a current trial where as long as there were 4 or less tumors you would be randomized between SRS or WBR.  This is in many major cancer hospitals – one is at MDA. Personally that trial got me sick to my stomach.  This is such a huge decision and to let a computer randomize which treatment you get!!!!!    To me each of us is an individual and each of our situation is different. 

With all melanoma trials/drugs there are no guarantees.  You need to go into the treatment knowing that you have gathered your information and feel this will be the right decision for you.  

Linda

Once more, i would not regret one iota the Gamma Knife (Novalis TS)  followed by  WBR.  Sense you have bleeding issues in one, I understand why they wanna do WBR first.    If you don't , there may not be a  " 2 years down the road."

The other option is obviously a craniotomy.

TAke Care,  Grady.

Once more, i would not regret one iota the Gamma Knife (Novalis TS)  followed by  WBR.  Sense you have bleeding issues in one, I understand why they wanna do WBR first.    If you don't , there may not be a  " 2 years down the road."

The other option is obviously a craniotomy.

TAke Care,  Grady.

Once more, i would not regret one iota the Gamma Knife (Novalis TS)  followed by  WBR.  Sense you have bleeding issues in one, I understand why they wanna do WBR first.    If you don't , there may not be a  " 2 years down the road."

The other option is obviously a craniotomy.

TAke Care,  Grady.

You're right Lisa, there's nobody, NOBODY with any cancer that can say this or that is bad, as every BODY is different! And we all know that MELANOMA is different in everyone.  We've seen some people who have had treatments for Brain Tumors (via all methods) who NEVER had them return, then others who end up getting them over & over even with treatments.

All these treatments we're all on, or may have to be on are a gamble, they either work or they don't, they work for a few months, or years, or for those lucky enough on this board who have lived Stage IV for 10+ years, it's a miracle in the Melanoma world (personally I only pay attention to Stage IV patients, since that's where I'm at and I'm concerned with how far they've gotten, how far Stage I, II or III have gotten doesn't concern me as their fight is much different than ours at Stage IV since we can't progress any further!).

 

 

 

 

You're right Lisa, there's nobody, NOBODY with any cancer that can say this or that is bad, as every BODY is different! And we all know that MELANOMA is different in everyone.  We've seen some people who have had treatments for Brain Tumors (via all methods) who NEVER had them return, then others who end up getting them over & over even with treatments.

All these treatments we're all on, or may have to be on are a gamble, they either work or they don't, they work for a few months, or years, or for those lucky enough on this board who have lived Stage IV for 10+ years, it's a miracle in the Melanoma world (personally I only pay attention to Stage IV patients, since that's where I'm at and I'm concerned with how far they've gotten, how far Stage I, II or III have gotten doesn't concern me as their fight is much different than ours at Stage IV since we can't progress any further!).

 

 

 

 

You're right Lisa, there's nobody, NOBODY with any cancer that can say this or that is bad, as every BODY is different! And we all know that MELANOMA is different in everyone.  We've seen some people who have had treatments for Brain Tumors (via all methods) who NEVER had them return, then others who end up getting them over & over even with treatments.

All these treatments we're all on, or may have to be on are a gamble, they either work or they don't, they work for a few months, or years, or for those lucky enough on this board who have lived Stage IV for 10+ years, it's a miracle in the Melanoma world (personally I only pay attention to Stage IV patients, since that's where I'm at and I'm concerned with how far they've gotten, how far Stage I, II or III have gotten doesn't concern me as their fight is much different than ours at Stage IV since we can't progress any further!).