Post from Janet Lee about Don

Hi Janet,

I can tell you that WBR didn't work for me.  I had only one brain met diagnosed in Dec 2012, I received WBR in January 2013.  I started Zelboraf about the same time.  In February 2013 I had my first Pet Scan and Brain MRI.  The tumor in my brain went from 12mm down to 8mm.  My PET scan showed significant shrinkage of lung mets and sub q's.  3 month follow up on Brain MRI end of May 2013 showed brain met now back to 12-13 mm.  Pet scan showed same, growth in lung mets and sub q's.  Evidently Zelboraf quit working.  I had SRS in June 2013 higher definition MRI showed not 1 brain met but 7.  Did SRS on 2 larger mets 12-13mm.  I don't know the results of that.  Going back in for Gamma Knife on July 25th.  I started Ipi infusions yesterday July 4th combined with 1/2 dose Zelboraf (not FDA approved).

It's hard to say if it was the Zelboraf or WBR that shrunk the original brain met, but the effects of WBR didn't work for me.  I don't have any results back on the SRS so sorry I can't help you there.  I do know that some people show progression before regression on Ipi, or so I've read.  My specialist wished I never got WBR he feels gamma knife and SRS works better.  For some people it works and for others it doesn't.  I'm changing radiation onc to Gamma Knife not SRS.  Hope this helps you.  

All my best,

Denise

Hi Janet,

I can tell you that WBR didn't work for me.  I had only one brain met diagnosed in Dec 2012, I received WBR in January 2013.  I started Zelboraf about the same time.  In February 2013 I had my first Pet Scan and Brain MRI.  The tumor in my brain went from 12mm down to 8mm.  My PET scan showed significant shrinkage of lung mets and sub q's.  3 month follow up on Brain MRI end of May 2013 showed brain met now back to 12-13 mm.  Pet scan showed same, growth in lung mets and sub q's.  Evidently Zelboraf quit working.  I had SRS in June 2013 higher definition MRI showed not 1 brain met but 7.  Did SRS on 2 larger mets 12-13mm.  I don't know the results of that.  Going back in for Gamma Knife on July 25th.  I started Ipi infusions yesterday July 4th combined with 1/2 dose Zelboraf (not FDA approved).

It's hard to say if it was the Zelboraf or WBR that shrunk the original brain met, but the effects of WBR didn't work for me.  I don't have any results back on the SRS so sorry I can't help you there.  I do know that some people show progression before regression on Ipi, or so I've read.  My specialist wished I never got WBR he feels gamma knife and SRS works better.  For some people it works and for others it doesn't.  I'm changing radiation onc to Gamma Knife not SRS.  Hope this helps you.  

All my best,

Denise

Hi Janet,

I can tell you that WBR didn't work for me.  I had only one brain met diagnosed in Dec 2012, I received WBR in January 2013.  I started Zelboraf about the same time.  In February 2013 I had my first Pet Scan and Brain MRI.  The tumor in my brain went from 12mm down to 8mm.  My PET scan showed significant shrinkage of lung mets and sub q's.  3 month follow up on Brain MRI end of May 2013 showed brain met now back to 12-13 mm.  Pet scan showed same, growth in lung mets and sub q's.  Evidently Zelboraf quit working.  I had SRS in June 2013 higher definition MRI showed not 1 brain met but 7.  Did SRS on 2 larger mets 12-13mm.  I don't know the results of that.  Going back in for Gamma Knife on July 25th.  I started Ipi infusions yesterday July 4th combined with 1/2 dose Zelboraf (not FDA approved).

It's hard to say if it was the Zelboraf or WBR that shrunk the original brain met, but the effects of WBR didn't work for me.  I don't have any results back on the SRS so sorry I can't help you there.  I do know that some people show progression before regression on Ipi, or so I've read.  My specialist wished I never got WBR he feels gamma knife and SRS works better.  For some people it works and for others it doesn't.  I'm changing radiation onc to Gamma Knife not SRS.  Hope this helps you.  

All my best,

Denise

Hi,

I just completed a course of WBR for 7 brain mets plus "several" concerning areas near/in the meninges. In my own research and discussions with my doctors (2 specialist at 2 different centers, plus my local oncologist and local radiation onc. in conference with radiation oncologist from specialty centers) the consensus is that SRS/Gamma knife are much more effective than WBR as they can deliver much higher doses of radiation to the tumor with fewer risks of damaging the normal brain compared to WBR. WBR is considered a palliative rather than a theraputic treatment- with the goal mainly being to stabilize more than shrink or eliminate brain mets, vs SRS where the goal is more to shrink/eliminate vs stablilize. The difficulty with SRS compared to WBR is that it can take a very long time to do the precise planning necessary to target an individual met, and so most places will not treat more than 3-5 mets. It is also felt that treating more than that is giving so much radiation to the brain you may as well do WBR. It is also not recommended for those of us who may have meningial mets because with SRS you target single tumors, but there is no effect on smaller pockets of cells or individual cells in other areas of the brain/meninges that may develop into tumors. 

That was the reasoning behind the recommendation/choice of WBR for me at this time- I had too many mets and the possibility of other microscopic disease that SRS would not address at this time. The hope is that the WBR will stabilize my mets or possibly get rid of some of the smaller ones (especially in the meninges) and depending on the outcome I may be able to go back for SRS on the larger ones at a later time. I have also been started on Ipi to try and further stabilize (or hopefully get a better response) throughout my whole body. I'd love a complete response from these therapies, but I'll certainly settle for stable long enough to join a trial. I won't have any scans for about a month to check on the progress, so in the mean time my fingers are crossed for both of us. 

It is true that many patients see worsening of disease on Ipi before they see it getting better and many patients don't see a response until the end or even a few months after the last dose, which is one of the things that scared me about Ipi. Ipi has been studied in people with brain mets though and if you get a response in the rest of your body, you should also get a response in the brain. I sincerely hope your husband gets at least enough response from the Ipi and whichever brain radiation you choose to stabilize him long enough for a trial, if not gives him a more complete/robust response. 

Quick note regarding side effects: The main side effects for WBR include hair loss and fatigue. I just finished my course on Monday and the fatigue so far isn't so bad. The radiation did "burn" my ear canals though, and they've been quite irritated for several days. My oncologist gave me a cream that does seem to be helping but I'm hoping that resolves soon as it keeps me awake at night. I've also heard that some people can get excessive wax buildup which can temporarily affect their hearing. Some people also get nausea, short term memory "fogginess", etc. Just make sure you communicate with your doctors regarding any side effects you have with either WBR or SRS. Also, my radiation oncologist started me on an alzheimer's medication called Namenda. I'll be on that for 6 months- it's supposed to help reduce the chances of any long term damage to the healthy portions of my brain. 

Best of luck to you and your husband. I hope this was helpful and not too confusing.

-Eva

Hi,

I just completed a course of WBR for 7 brain mets plus "several" concerning areas near/in the meninges. In my own research and discussions with my doctors (2 specialist at 2 different centers, plus my local oncologist and local radiation onc. in conference with radiation oncologist from specialty centers) the consensus is that SRS/Gamma knife are much more effective than WBR as they can deliver much higher doses of radiation to the tumor with fewer risks of damaging the normal brain compared to WBR. WBR is considered a palliative rather than a theraputic treatment- with the goal mainly being to stabilize more than shrink or eliminate brain mets, vs SRS where the goal is more to shrink/eliminate vs stablilize. The difficulty with SRS compared to WBR is that it can take a very long time to do the precise planning necessary to target an individual met, and so most places will not treat more than 3-5 mets. It is also felt that treating more than that is giving so much radiation to the brain you may as well do WBR. It is also not recommended for those of us who may have meningial mets because with SRS you target single tumors, but there is no effect on smaller pockets of cells or individual cells in other areas of the brain/meninges that may develop into tumors. 

That was the reasoning behind the recommendation/choice of WBR for me at this time- I had too many mets and the possibility of other microscopic disease that SRS would not address at this time. The hope is that the WBR will stabilize my mets or possibly get rid of some of the smaller ones (especially in the meninges) and depending on the outcome I may be able to go back for SRS on the larger ones at a later time. I have also been started on Ipi to try and further stabilize (or hopefully get a better response) throughout my whole body. I'd love a complete response from these therapies, but I'll certainly settle for stable long enough to join a trial. I won't have any scans for about a month to check on the progress, so in the mean time my fingers are crossed for both of us. 

It is true that many patients see worsening of disease on Ipi before they see it getting better and many patients don't see a response until the end or even a few months after the last dose, which is one of the things that scared me about Ipi. Ipi has been studied in people with brain mets though and if you get a response in the rest of your body, you should also get a response in the brain. I sincerely hope your husband gets at least enough response from the Ipi and whichever brain radiation you choose to stabilize him long enough for a trial, if not gives him a more complete/robust response. 

Quick note regarding side effects: The main side effects for WBR include hair loss and fatigue. I just finished my course on Monday and the fatigue so far isn't so bad. The radiation did "burn" my ear canals though, and they've been quite irritated for several days. My oncologist gave me a cream that does seem to be helping but I'm hoping that resolves soon as it keeps me awake at night. I've also heard that some people can get excessive wax buildup which can temporarily affect their hearing. Some people also get nausea, short term memory "fogginess", etc. Just make sure you communicate with your doctors regarding any side effects you have with either WBR or SRS. Also, my radiation oncologist started me on an alzheimer's medication called Namenda. I'll be on that for 6 months- it's supposed to help reduce the chances of any long term damage to the healthy portions of my brain. 

Best of luck to you and your husband. I hope this was helpful and not too confusing.

-Eva

Hi,

I just completed a course of WBR for 7 brain mets plus "several" concerning areas near/in the meninges. In my own research and discussions with my doctors (2 specialist at 2 different centers, plus my local oncologist and local radiation onc. in conference with radiation oncologist from specialty centers) the consensus is that SRS/Gamma knife are much more effective than WBR as they can deliver much higher doses of radiation to the tumor with fewer risks of damaging the normal brain compared to WBR. WBR is considered a palliative rather than a theraputic treatment- with the goal mainly being to stabilize more than shrink or eliminate brain mets, vs SRS where the goal is more to shrink/eliminate vs stablilize. The difficulty with SRS compared to WBR is that it can take a very long time to do the precise planning necessary to target an individual met, and so most places will not treat more than 3-5 mets. It is also felt that treating more than that is giving so much radiation to the brain you may as well do WBR. It is also not recommended for those of us who may have meningial mets because with SRS you target single tumors, but there is no effect on smaller pockets of cells or individual cells in other areas of the brain/meninges that may develop into tumors. 

That was the reasoning behind the recommendation/choice of WBR for me at this time- I had too many mets and the possibility of other microscopic disease that SRS would not address at this time. The hope is that the WBR will stabilize my mets or possibly get rid of some of the smaller ones (especially in the meninges) and depending on the outcome I may be able to go back for SRS on the larger ones at a later time. I have also been started on Ipi to try and further stabilize (or hopefully get a better response) throughout my whole body. I'd love a complete response from these therapies, but I'll certainly settle for stable long enough to join a trial. I won't have any scans for about a month to check on the progress, so in the mean time my fingers are crossed for both of us. 

It is true that many patients see worsening of disease on Ipi before they see it getting better and many patients don't see a response until the end or even a few months after the last dose, which is one of the things that scared me about Ipi. Ipi has been studied in people with brain mets though and if you get a response in the rest of your body, you should also get a response in the brain. I sincerely hope your husband gets at least enough response from the Ipi and whichever brain radiation you choose to stabilize him long enough for a trial, if not gives him a more complete/robust response. 

Quick note regarding side effects: The main side effects for WBR include hair loss and fatigue. I just finished my course on Monday and the fatigue so far isn't so bad. The radiation did "burn" my ear canals though, and they've been quite irritated for several days. My oncologist gave me a cream that does seem to be helping but I'm hoping that resolves soon as it keeps me awake at night. I've also heard that some people can get excessive wax buildup which can temporarily affect their hearing. Some people also get nausea, short term memory "fogginess", etc. Just make sure you communicate with your doctors regarding any side effects you have with either WBR or SRS. Also, my radiation oncologist started me on an alzheimer's medication called Namenda. I'll be on that for 6 months- it's supposed to help reduce the chances of any long term damage to the healthy portions of my brain. 

Best of luck to you and your husband. I hope this was helpful and not too confusing.

-Eva

Hi Janet,

About the posting issues that you are having…  I cannot post with Internet Explorer but can through Firefox.  Might want to give that a try.

Sorry to hear what you are going through.  Sort of the same thing around here.  Details below.

I would absolutely feel comfortable doing what Dana Farber suggests.

My husband, Scott just finished IPI with Temador and WBR at the same time. It has not worked.  He has so many mets that I don't even want to know about each and every one of them.  They are all over his back, neck, chest, lower leg and more.  His stomach is full of them and he struggles with nausea even with zofran. Anti-Pd1 is the only hope.

He has had 3 rounds of brain mets within a year.  First 2 mets November/SRS, then about 3 in January/WBR and now 6/SRS completed in mid to late May.  All REALLY small mets.  He has had his brain zapped a lot and is still with it mentally.

Waiting to see if the last batch is gone since the SRS.  MRI is Monday the 8th.  If it worked then we will start testing at Vanderbilt for the Anti PD-1 Merck, on the 11th, randomized.  It's all a gamble.

Dana Farber is one of the best places of care and I would trust what they say. You have to give it a try, you can't do anymore than that.

It's scary when it gets to this point.  You only have so many things that you can try and no one knows.  I don't think the WBR is a bad idea.  Of course you are in risky territory, but it can end OK. Scott has hung in there and is fully functional with a full deck mentally. 

I'd get a plan for where you want to try to get into the Anti-PD1 if you can't get in at Dana Farber. Try to make tentative appointments based on when he gets the final MRI after the brain is treated.  If the brain MRI turns out bad then you can cancel.  Time is getting to be a big issue so you have to plan ahead as much as possible. 

Hopefully the IPI kick in.  There is always hope since it can take a while. 

Will be thinking of you. 

In thoughts and prayers,

Lisa

Hi Janet,

About the posting issues that you are having…  I cannot post with Internet Explorer but can through Firefox.  Might want to give that a try.

Sorry to hear what you are going through.  Sort of the same thing around here.  Details below.

I would absolutely feel comfortable doing what Dana Farber suggests.

My husband, Scott just finished IPI with Temador and WBR at the same time. It has not worked.  He has so many mets that I don't even want to know about each and every one of them.  They are all over his back, neck, chest, lower leg and more.  His stomach is full of them and he struggles with nausea even with zofran. Anti-Pd1 is the only hope.

He has had 3 rounds of brain mets within a year.  First 2 mets November/SRS, then about 3 in January/WBR and now 6/SRS completed in mid to late May.  All REALLY small mets.  He has had his brain zapped a lot and is still with it mentally.

Waiting to see if the last batch is gone since the SRS.  MRI is Monday the 8th.  If it worked then we will start testing at Vanderbilt for the Anti PD-1 Merck, on the 11th, randomized.  It's all a gamble.

Dana Farber is one of the best places of care and I would trust what they say. You have to give it a try, you can't do anymore than that.

It's scary when it gets to this point.  You only have so many things that you can try and no one knows.  I don't think the WBR is a bad idea.  Of course you are in risky territory, but it can end OK. Scott has hung in there and is fully functional with a full deck mentally. 

I'd get a plan for where you want to try to get into the Anti-PD1 if you can't get in at Dana Farber. Try to make tentative appointments based on when he gets the final MRI after the brain is treated.  If the brain MRI turns out bad then you can cancel.  Time is getting to be a big issue so you have to plan ahead as much as possible. 

Hopefully the IPI kick in.  There is always hope since it can take a while. 

Will be thinking of you. 

In thoughts and prayers,

Lisa

Hi Janet,

About the posting issues that you are having…  I cannot post with Internet Explorer but can through Firefox.  Might want to give that a try.

Sorry to hear what you are going through.  Sort of the same thing around here.  Details below.

I would absolutely feel comfortable doing what Dana Farber suggests.

My husband, Scott just finished IPI with Temador and WBR at the same time. It has not worked.  He has so many mets that I don't even want to know about each and every one of them.  They are all over his back, neck, chest, lower leg and more.  His stomach is full of them and he struggles with nausea even with zofran. Anti-Pd1 is the only hope.

He has had 3 rounds of brain mets within a year.  First 2 mets November/SRS, then about 3 in January/WBR and now 6/SRS completed in mid to late May.  All REALLY small mets.  He has had his brain zapped a lot and is still with it mentally.

Waiting to see if the last batch is gone since the SRS.  MRI is Monday the 8th.  If it worked then we will start testing at Vanderbilt for the Anti PD-1 Merck, on the 11th, randomized.  It's all a gamble.

Dana Farber is one of the best places of care and I would trust what they say. You have to give it a try, you can't do anymore than that.

It's scary when it gets to this point.  You only have so many things that you can try and no one knows.  I don't think the WBR is a bad idea.  Of course you are in risky territory, but it can end OK. Scott has hung in there and is fully functional with a full deck mentally. 

I'd get a plan for where you want to try to get into the Anti-PD1 if you can't get in at Dana Farber. Try to make tentative appointments based on when he gets the final MRI after the brain is treated.  If the brain MRI turns out bad then you can cancel.  Time is getting to be a big issue so you have to plan ahead as much as possible. 

Hopefully the IPI kick in.  There is always hope since it can take a while. 

Will be thinking of you. 

In thoughts and prayers,

Lisa

Alleluia! I am able to post a reply! Only because somehow I managed to log in through Google Chrome (which I don't really like) instead of Internet Explorer. Hope the MRF can get this sorted out.

First of all thank you to all of you who replied to my plea. Each decision we have to make on this journey seems like the most difficult one, and then BAM! we're hit with another one. I honestly don't know what I would do without this forum to learn from, to identify with, to cry with.

I think I have a good feel for the various questions we are going to pose to our oncologists this week. 

Incidentally, Dr. Ibrahim's leaving Dana Farber is a real shock and a real shame. We, as her patients, are not quite sure what is going on, but we certainly had come to rely on her and trust her over these past six months; to now have to deal with "staying or leaving" Dana Farber is certainly what I always called in business an "illegitimate" problem — one I should not have to be dealing with!

Thank you all. Continue the good fight. I know Don and I are!!!!

Janet

Alleluia! I am able to post a reply! Only because somehow I managed to log in through Google Chrome (which I don't really like) instead of Internet Explorer. Hope the MRF can get this sorted out.

First of all thank you to all of you who replied to my plea. Each decision we have to make on this journey seems like the most difficult one, and then BAM! we're hit with another one. I honestly don't know what I would do without this forum to learn from, to identify with, to cry with.

I think I have a good feel for the various questions we are going to pose to our oncologists this week. 

Incidentally, Dr. Ibrahim's leaving Dana Farber is a real shock and a real shame. We, as her patients, are not quite sure what is going on, but we certainly had come to rely on her and trust her over these past six months; to now have to deal with "staying or leaving" Dana Farber is certainly what I always called in business an "illegitimate" problem — one I should not have to be dealing with!

Thank you all. Continue the good fight. I know Don and I are!!!!

Janet

Alleluia! I am able to post a reply! Only because somehow I managed to log in through Google Chrome (which I don't really like) instead of Internet Explorer. Hope the MRF can get this sorted out.

First of all thank you to all of you who replied to my plea. Each decision we have to make on this journey seems like the most difficult one, and then BAM! we're hit with another one. I honestly don't know what I would do without this forum to learn from, to identify with, to cry with.

I think I have a good feel for the various questions we are going to pose to our oncologists this week. 

Incidentally, Dr. Ibrahim's leaving Dana Farber is a real shock and a real shame. We, as her patients, are not quite sure what is going on, but we certainly had come to rely on her and trust her over these past six months; to now have to deal with "staying or leaving" Dana Farber is certainly what I always called in business an "illegitimate" problem — one I should not have to be dealing with!

Thank you all. Continue the good fight. I know Don and I are!!!!

Janet

Thank you for posting this for me, Tim. As suggested by a couple of people, I logged on using a different browser (I used Google Chrome) and I was able to post.

When I am using Internet Explorer (I'm using version 10) I cannot Post at all. The reply box is all greyed out, and it will not take any input from the keyboard. Same things happens when I try to Create a new Topic.

When I used Google Chrome, the reply box is white, and it takes my input. 

Hope this will help your IT team, as I really don't like new things, and prefer Internet Explorer!

Janet

Thank you for posting this for me, Tim. As suggested by a couple of people, I logged on using a different browser (I used Google Chrome) and I was able to post.

When I am using Internet Explorer (I'm using version 10) I cannot Post at all. The reply box is all greyed out, and it will not take any input from the keyboard. Same things happens when I try to Create a new Topic.

When I used Google Chrome, the reply box is white, and it takes my input. 

Hope this will help your IT team, as I really don't like new things, and prefer Internet Explorer!

Janet

Thank you for posting this for me, Tim. As suggested by a couple of people, I logged on using a different browser (I used Google Chrome) and I was able to post.

When I am using Internet Explorer (I'm using version 10) I cannot Post at all. The reply box is all greyed out, and it will not take any input from the keyboard. Same things happens when I try to Create a new Topic.

When I used Google Chrome, the reply box is white, and it takes my input. 

Hope this will help your IT team, as I really don't like new things, and prefer Internet Explorer!

Janet

My Son suffers from a very dangerous disease and I also suffer from a disease because of my age. But after reading your post, I am able to reply you because of your efforts towards the patients. You encouraged me. Keep posting like this. My friend also has a website which provides Hotmail Customer Service so that you solve your problems related to any email accounts.

Excellent post, Eva! Very clear and helpful now and for other patients in the future.

I want to comment on your mention of the meninges. It is my understanding that not all brain tumors are created equal. Some are located in a part of the brain where they are not likely to cause immediate life-threatenng damage. Sometimes a "watch and wait" approach or a slow-acting immune treatment can be adopted for such tumors. Other tumors are located in a part of the brain that can be of real and immediate concern. The brain stem, for example, controls the most basic functions of life like breathing– a tumor near the brain stem is considered very serious because it can grow to the point where it is life threatening.  Tumors near the brain stem are usually treated quickly and aggressively. The meninges is the membrane that surrounds brain and the spinal column. Tumors in the meninges (also called the leptomeninges) can quickly spread all over the surface of the brain and down the spinal column thereby causing a lot of damage. So meningeal tumors are also treated quickly and aggressively. 

My point is that the choice between WBR and SRS (and any other type of melanoma treatment, for that matter) is very complex. There are many different factors to consider. Your case, Eva, is an excellent example of that.  As always, there is no one "right" answer– every case is different. All that we as patients and caregivers can do is make the best decision we can with the information we have available at the time and then never look back. And remember that when all is said and done, not everything is within our control.

Excellent post, Eva! Very clear and helpful now and for other patients in the future.

I want to comment on your mention of the meninges. It is my understanding that not all brain tumors are created equal. Some are located in a part of the brain where they are not likely to cause immediate life-threatenng damage. Sometimes a "watch and wait" approach or a slow-acting immune treatment can be adopted for such tumors. Other tumors are located in a part of the brain that can be of real and immediate concern. The brain stem, for example, controls the most basic functions of life like breathing– a tumor near the brain stem is considered very serious because it can grow to the point where it is life threatening.  Tumors near the brain stem are usually treated quickly and aggressively. The meninges is the membrane that surrounds brain and the spinal column. Tumors in the meninges (also called the leptomeninges) can quickly spread all over the surface of the brain and down the spinal column thereby causing a lot of damage. So meningeal tumors are also treated quickly and aggressively. 

My point is that the choice between WBR and SRS (and any other type of melanoma treatment, for that matter) is very complex. There are many different factors to consider. Your case, Eva, is an excellent example of that.  As always, there is no one "right" answer– every case is different. All that we as patients and caregivers can do is make the best decision we can with the information we have available at the time and then never look back. And remember that when all is said and done, not everything is within our control.

Excellent post, Eva! Very clear and helpful now and for other patients in the future.

I want to comment on your mention of the meninges. It is my understanding that not all brain tumors are created equal. Some are located in a part of the brain where they are not likely to cause immediate life-threatenng damage. Sometimes a "watch and wait" approach or a slow-acting immune treatment can be adopted for such tumors. Other tumors are located in a part of the brain that can be of real and immediate concern. The brain stem, for example, controls the most basic functions of life like breathing– a tumor near the brain stem is considered very serious because it can grow to the point where it is life threatening.  Tumors near the brain stem are usually treated quickly and aggressively. The meninges is the membrane that surrounds brain and the spinal column. Tumors in the meninges (also called the leptomeninges) can quickly spread all over the surface of the brain and down the spinal column thereby causing a lot of damage. So meningeal tumors are also treated quickly and aggressively. 

My point is that the choice between WBR and SRS (and any other type of melanoma treatment, for that matter) is very complex. There are many different factors to consider. Your case, Eva, is an excellent example of that.  As always, there is no one "right" answer– every case is different. All that we as patients and caregivers can do is make the best decision we can with the information we have available at the time and then never look back. And remember that when all is said and done, not everything is within our control.

Eva,

Thank you so much for sharing your story. I'm so sorry to hear of your ups-and-downs with this disease.

I do believe that, no matter what the decision point is with melanoma, there is never an easy answer, nor is there ever a favored response. There are still too many if's and, as our oncologist says, "Melanoma calls the shots."

That is one of the beauties of this forum. We can share our stories and experiences and results, and we can all learn a little bit at a time. We know we are not alone in this battle. I would love to learn more from your history, so please contact me directly if you ever feel you have the energy or time to do so: [email protected]

Janet

Eva,

Thank you so much for sharing your story. I'm so sorry to hear of your ups-and-downs with this disease.

I do believe that, no matter what the decision point is with melanoma, there is never an easy answer, nor is there ever a favored response. There are still too many if's and, as our oncologist says, "Melanoma calls the shots."

That is one of the beauties of this forum. We can share our stories and experiences and results, and we can all learn a little bit at a time. We know we are not alone in this battle. I would love to learn more from your history, so please contact me directly if you ever feel you have the energy or time to do so: [email protected]

Janet

Eva,

Thank you so much for sharing your story. I'm so sorry to hear of your ups-and-downs with this disease.

I do believe that, no matter what the decision point is with melanoma, there is never an easy answer, nor is there ever a favored response. There are still too many if's and, as our oncologist says, "Melanoma calls the shots."

That is one of the beauties of this forum. We can share our stories and experiences and results, and we can all learn a little bit at a time. We know we are not alone in this battle. I would love to learn more from your history, so please contact me directly if you ever feel you have the energy or time to do so: [email protected]

Janet

Just wanted to say you have been on my mind the last couple of days. I am so sorry to hear Don is not doing well and it sounds like you are doing everything you can for him. It is often so hard to know what to do and also have the strength not to look back. Prayers for God’s healing and peace.

Amy

Just wanted to say you have been on my mind the last couple of days. I am so sorry to hear Don is not doing well and it sounds like you are doing everything you can for him. It is often so hard to know what to do and also have the strength not to look back. Prayers for God’s healing and peace.

Amy

Just wanted to say you have been on my mind the last couple of days. I am so sorry to hear Don is not doing well and it sounds like you are doing everything you can for him. It is often so hard to know what to do and also have the strength not to look back. Prayers for God’s healing and peace.

Amy

So sorry to hear Scott is not doing well. I’ve been going to Vanderbilt over 2 yrs now and love it. I am getting Merck’s Anti PD1 and have my fourth infusion this wk. I never thought I’d make it this far, and its not clear if its working or not, however I remain hopeful. Msg me if you have?s. good luck on the 8th. All the timing for these trials is a nightmare but honestly, if I am still here, anything is possible!

Amy

So sorry to hear Scott is not doing well. I’ve been going to Vanderbilt over 2 yrs now and love it. I am getting Merck’s Anti PD1 and have my fourth infusion this wk. I never thought I’d make it this far, and its not clear if its working or not, however I remain hopeful. Msg me if you have?s. good luck on the 8th. All the timing for these trials is a nightmare but honestly, if I am still here, anything is possible!

Amy

So sorry to hear Scott is not doing well. I’ve been going to Vanderbilt over 2 yrs now and love it. I am getting Merck’s Anti PD1 and have my fourth infusion this wk. I never thought I’d make it this far, and its not clear if its working or not, however I remain hopeful. Msg me if you have?s. good luck on the 8th. All the timing for these trials is a nightmare but honestly, if I am still here, anything is possible!

Amy