Looking for support

Hi Anon, now that you got that off your chest, do you feel better? I know that sometimes if you read one post and look at it in isolation some people can come off as being a little harsh. I try to read what the poster asked about in the past and I like to look at thier history before I jump in. That being said it is really hard to do that with Anon's since some post are Anon's talking to Anon's and it can get pretty confusing. I get the reasons that some people feel more comfortable as being an Anon but if you are truely looking for a community that will help at least call yourself Anon big or Anon small or anything so that people can get to know you. Now, if you go back to the post that got you upset and search the poster's previous posts, then maybe you will see a pattern, it happens a lot with new members that are in freak out mode!!!! Some times members that have been around for awhile can be a little blunt, I find that I used to go off on anyone talking about alternative medicine or anything that wasn't based on my view of proper science. Oh, one last thing, Interferon post tend to bring out the worst in most people that have gone through the treatments. Best Wishes!!!Ed

Hi Anon, now that you got that off your chest, do you feel better? I know that sometimes if you read one post and look at it in isolation some people can come off as being a little harsh. I try to read what the poster asked about in the past and I like to look at thier history before I jump in. That being said it is really hard to do that with Anon's since some post are Anon's talking to Anon's and it can get pretty confusing. I get the reasons that some people feel more comfortable as being an Anon but if you are truely looking for a community that will help at least call yourself Anon big or Anon small or anything so that people can get to know you. Now, if you go back to the post that got you upset and search the poster's previous posts, then maybe you will see a pattern, it happens a lot with new members that are in freak out mode!!!! Some times members that have been around for awhile can be a little blunt, I find that I used to go off on anyone talking about alternative medicine or anything that wasn't based on my view of proper science. Oh, one last thing, Interferon post tend to bring out the worst in most people that have gone through the treatments. Best Wishes!!!Ed

Hi Anon, now that you got that off your chest, do you feel better? I know that sometimes if you read one post and look at it in isolation some people can come off as being a little harsh. I try to read what the poster asked about in the past and I like to look at thier history before I jump in. That being said it is really hard to do that with Anon's since some post are Anon's talking to Anon's and it can get pretty confusing. I get the reasons that some people feel more comfortable as being an Anon but if you are truely looking for a community that will help at least call yourself Anon big or Anon small or anything so that people can get to know you. Now, if you go back to the post that got you upset and search the poster's previous posts, then maybe you will see a pattern, it happens a lot with new members that are in freak out mode!!!! Some times members that have been around for awhile can be a little blunt, I find that I used to go off on anyone talking about alternative medicine or anything that wasn't based on my view of proper science. Oh, one last thing, Interferon post tend to bring out the worst in most people that have gone through the treatments. Best Wishes!!!Ed

Anon- I think I have to disagree with you. Ive been on this board for over 3 years. People actually try really hard to lift others up on this board. I dont think someone judging another happens very often at all. I know from time to time we all may not agree with a choice someone has made but I personally have never seen anyone actually judge someone. Really like Ed said, Interferon is really the only subject that gets feathers ruffled. I would hope you would feel comfortable posting or lurking on this board as it has a tremendous amount of current treatment info. These men and women, a lot of us, have been through a lot and are probably just seeking the same things you are. What more could you want yhan to actually talk first hand with someone going through the same thing you are.

Anon- I think I have to disagree with you. Ive been on this board for over 3 years. People actually try really hard to lift others up on this board. I dont think someone judging another happens very often at all. I know from time to time we all may not agree with a choice someone has made but I personally have never seen anyone actually judge someone. Really like Ed said, Interferon is really the only subject that gets feathers ruffled. I would hope you would feel comfortable posting or lurking on this board as it has a tremendous amount of current treatment info. These men and women, a lot of us, have been through a lot and are probably just seeking the same things you are. What more could you want yhan to actually talk first hand with someone going through the same thing you are.

Anon- I think I have to disagree with you. Ive been on this board for over 3 years. People actually try really hard to lift others up on this board. I dont think someone judging another happens very often at all. I know from time to time we all may not agree with a choice someone has made but I personally have never seen anyone actually judge someone. Really like Ed said, Interferon is really the only subject that gets feathers ruffled. I would hope you would feel comfortable posting or lurking on this board as it has a tremendous amount of current treatment info. These men and women, a lot of us, have been through a lot and are probably just seeking the same things you are. What more could you want yhan to actually talk first hand with someone going through the same thing you are.

Hi,

Really sorry to hear that you are struggling with M today. I've had my own struggles recently – been in your limbo land for three weeks and found it very difficult waiting for the MRI to clarify possible mets on CT. Got the results on Monday and it wasn't good news.

Glad your docs are cooperating. Not easy to distract yourself all the time , but think it means the docs think in your case it is ok to wait a bit… which sounds like good news and they are using their experience..

Can't really add a lot  re how to get through this as have ended up on sleeping pills and off my food with the anxiety. Trying to take it one day at a time and get the treatment lined up .. but scan— wait for results- need new MRI before treatment start/ wait for result as could disqualify from trial treatment etc– it really is not a good place to be.

Am trying to pack the anxiety away – at least for some of the time – and not let it take over but that is easier said than done. Am dreading telling the kids- in their twenties but the news will hurt us all.

Please carry on posting and sharing. I don't think anyone here wishes to cause offence at all. We are all vunerable and even the lucky ones know that a scan can totally change the outlook. Everyone's melanoma is different andt here are no one size fits all answers but understanding the pros and cons and having experienced docs can help you to weigh options and come to a peace re treatment decisions.

Sending a hug  for what its worth.. the wait will not last forever and will cross my fingers things turn out ok.

 

 

Hi,

Really sorry to hear that you are struggling with M today. I've had my own struggles recently – been in your limbo land for three weeks and found it very difficult waiting for the MRI to clarify possible mets on CT. Got the results on Monday and it wasn't good news.

Glad your docs are cooperating. Not easy to distract yourself all the time , but think it means the docs think in your case it is ok to wait a bit… which sounds like good news and they are using their experience..

Can't really add a lot  re how to get through this as have ended up on sleeping pills and off my food with the anxiety. Trying to take it one day at a time and get the treatment lined up .. but scan— wait for results- need new MRI before treatment start/ wait for result as could disqualify from trial treatment etc– it really is not a good place to be.

Am trying to pack the anxiety away – at least for some of the time – and not let it take over but that is easier said than done. Am dreading telling the kids- in their twenties but the news will hurt us all.

Please carry on posting and sharing. I don't think anyone here wishes to cause offence at all. We are all vunerable and even the lucky ones know that a scan can totally change the outlook. Everyone's melanoma is different andt here are no one size fits all answers but understanding the pros and cons and having experienced docs can help you to weigh options and come to a peace re treatment decisions.

Sending a hug  for what its worth.. the wait will not last forever and will cross my fingers things turn out ok.

 

 

Hi,

Really sorry to hear that you are struggling with M today. I've had my own struggles recently – been in your limbo land for three weeks and found it very difficult waiting for the MRI to clarify possible mets on CT. Got the results on Monday and it wasn't good news.

Glad your docs are cooperating. Not easy to distract yourself all the time , but think it means the docs think in your case it is ok to wait a bit… which sounds like good news and they are using their experience..

Can't really add a lot  re how to get through this as have ended up on sleeping pills and off my food with the anxiety. Trying to take it one day at a time and get the treatment lined up .. but scan— wait for results- need new MRI before treatment start/ wait for result as could disqualify from trial treatment etc– it really is not a good place to be.

Am trying to pack the anxiety away – at least for some of the time – and not let it take over but that is easier said than done. Am dreading telling the kids- in their twenties but the news will hurt us all.

Please carry on posting and sharing. I don't think anyone here wishes to cause offence at all. We are all vunerable and even the lucky ones know that a scan can totally change the outlook. Everyone's melanoma is different andt here are no one size fits all answers but understanding the pros and cons and having experienced docs can help you to weigh options and come to a peace re treatment decisions.

Sending a hug  for what its worth.. the wait will not last forever and will cross my fingers things turn out ok.

 

 

Hey Peggy,

Perhaps your head will peek out long enough to see this. I may not get this right…but here are my thoughts:

As Jennifer (Snow White) mentioned, the written word does not always convey exactly what the writer is trying to say to the reader. And, as you noted, the anonymity that even those of us who use our real names still have behind a computer screen, can complicate things. Add the stress of melanoma that EVERY person here is dealing with in one way or another, and you have a perfect recipe for major pitfalls in relationships and communication.

I have been dealing with melanoma for over 13 years. Reading, and later writing, on this board for 6. I see everyone here as individuals. But…there are some consistencies I've seen over this time. When first given a diagnosis of melanoma (no matter the Stage) the freak out is complete….across the board…myself included. Folks focus on the worst. There is no cure. This shit kills people…and I HAVE IT!! I did. Most folks settle down…Stage I and 2 peeps generally move off the board…probably happily busy with lives never again tarnished with melanoma. Stage IV folks start seeking treatments and trials as needed. Folks at all stages are incredibly supportive of their successes and losses…something you have already provided valuable offerings of here!

And then there are the Stage III/Stage IV NED folks. Currently, they seem to be having the most stressful time…in sort of an ironic twist that only melanoma and the crazy world that FDA drug approval and provision of medical treatment options across the globe can create. Melanoma Neverland. 

Today, treatment for melanoma still sucks great big green hairy wizard balls! There are…still…too many side effects and too few responders. On the other hand, BRAFi and immunotherapies (anti-PD1, ipi, various combo's) are bringing valid treatment options and remissions to folks with a disease who, just 6 years ago, had NONE! Yet, if your level of disease does not meet the "guidelines" written just so, by who knows whom….your doc, or your insurance company, or your country dictates your choices. Frustration does not begin to define the human result!

I get that. Almost everyone here does. But…folks still don't like to hear it. Hell, I don't like to say it! I know the frustration my words will bring. I KNOW this because I've lived it!! In 2010, as a Stage IV melanoma patient post brain and lung mets…I had no treatment options! None. Until I found my trial.

So….it is very difficult, I think, for folks in that particular segment of our world. Stage IV folks have had to practice up (most of the time). Stage III folks feel like they have been handed a death sentence and had treatment purposely withheld. A lot of us understand. I rant so often about the lack of adjuvant care on my blog that it is a wonder that folks still read those posts! Many of us here try to let folks know their stats that, despite everything, remain pretty good in regard to progression, the treatment choices that exist (the good, the bad, and the ugly), as well as future treatments they have access to should they ever need them. We will also try to get those who are clearly tremendously upset, to calm down, take a breath, and live each day they currently have. Not because we just want them to hush up. Not because we don't know how they feel. No…it is because we do!!  And often….someone else showed us they way…and helped US learn to breathe again.

You have provided a great deal of support to many here. Should you go, you would be missed. However, you had previously mentioned your desire to enjoy your fall, manage your care as planned, and re-assess when you must.  As before, I still say…"Breathe deep, seek peace." I wish you well. Celeste

Hey Peggy,

Perhaps your head will peek out long enough to see this. I may not get this right…but here are my thoughts:

As Jennifer (Snow White) mentioned, the written word does not always convey exactly what the writer is trying to say to the reader. And, as you noted, the anonymity that even those of us who use our real names still have behind a computer screen, can complicate things. Add the stress of melanoma that EVERY person here is dealing with in one way or another, and you have a perfect recipe for major pitfalls in relationships and communication.

I have been dealing with melanoma for over 13 years. Reading, and later writing, on this board for 6. I see everyone here as individuals. But…there are some consistencies I've seen over this time. When first given a diagnosis of melanoma (no matter the Stage) the freak out is complete….across the board…myself included. Folks focus on the worst. There is no cure. This shit kills people…and I HAVE IT!! I did. Most folks settle down…Stage I and 2 peeps generally move off the board…probably happily busy with lives never again tarnished with melanoma. Stage IV folks start seeking treatments and trials as needed. Folks at all stages are incredibly supportive of their successes and losses…something you have already provided valuable offerings of here!

And then there are the Stage III/Stage IV NED folks. Currently, they seem to be having the most stressful time…in sort of an ironic twist that only melanoma and the crazy world that FDA drug approval and provision of medical treatment options across the globe can create. Melanoma Neverland. 

Today, treatment for melanoma still sucks great big green hairy wizard balls! There are…still…too many side effects and too few responders. On the other hand, BRAFi and immunotherapies (anti-PD1, ipi, various combo's) are bringing valid treatment options and remissions to folks with a disease who, just 6 years ago, had NONE! Yet, if your level of disease does not meet the "guidelines" written just so, by who knows whom….your doc, or your insurance company, or your country dictates your choices. Frustration does not begin to define the human result!

I get that. Almost everyone here does. But…folks still don't like to hear it. Hell, I don't like to say it! I know the frustration my words will bring. I KNOW this because I've lived it!! In 2010, as a Stage IV melanoma patient post brain and lung mets…I had no treatment options! None. Until I found my trial.

So….it is very difficult, I think, for folks in that particular segment of our world. Stage IV folks have had to practice up (most of the time). Stage III folks feel like they have been handed a death sentence and had treatment purposely withheld. A lot of us understand. I rant so often about the lack of adjuvant care on my blog that it is a wonder that folks still read those posts! Many of us here try to let folks know their stats that, despite everything, remain pretty good in regard to progression, the treatment choices that exist (the good, the bad, and the ugly), as well as future treatments they have access to should they ever need them. We will also try to get those who are clearly tremendously upset, to calm down, take a breath, and live each day they currently have. Not because we just want them to hush up. Not because we don't know how they feel. No…it is because we do!!  And often….someone else showed us they way…and helped US learn to breathe again.

You have provided a great deal of support to many here. Should you go, you would be missed. However, you had previously mentioned your desire to enjoy your fall, manage your care as planned, and re-assess when you must.  As before, I still say…"Breathe deep, seek peace." I wish you well. Celeste

Hey Peggy,

Perhaps your head will peek out long enough to see this. I may not get this right…but here are my thoughts:

As Jennifer (Snow White) mentioned, the written word does not always convey exactly what the writer is trying to say to the reader. And, as you noted, the anonymity that even those of us who use our real names still have behind a computer screen, can complicate things. Add the stress of melanoma that EVERY person here is dealing with in one way or another, and you have a perfect recipe for major pitfalls in relationships and communication.

I have been dealing with melanoma for over 13 years. Reading, and later writing, on this board for 6. I see everyone here as individuals. But…there are some consistencies I've seen over this time. When first given a diagnosis of melanoma (no matter the Stage) the freak out is complete….across the board…myself included. Folks focus on the worst. There is no cure. This shit kills people…and I HAVE IT!! I did. Most folks settle down…Stage I and 2 peeps generally move off the board…probably happily busy with lives never again tarnished with melanoma. Stage IV folks start seeking treatments and trials as needed. Folks at all stages are incredibly supportive of their successes and losses…something you have already provided valuable offerings of here!

And then there are the Stage III/Stage IV NED folks. Currently, they seem to be having the most stressful time…in sort of an ironic twist that only melanoma and the crazy world that FDA drug approval and provision of medical treatment options across the globe can create. Melanoma Neverland. 

Today, treatment for melanoma still sucks great big green hairy wizard balls! There are…still…too many side effects and too few responders. On the other hand, BRAFi and immunotherapies (anti-PD1, ipi, various combo's) are bringing valid treatment options and remissions to folks with a disease who, just 6 years ago, had NONE! Yet, if your level of disease does not meet the "guidelines" written just so, by who knows whom….your doc, or your insurance company, or your country dictates your choices. Frustration does not begin to define the human result!

I get that. Almost everyone here does. But…folks still don't like to hear it. Hell, I don't like to say it! I know the frustration my words will bring. I KNOW this because I've lived it!! In 2010, as a Stage IV melanoma patient post brain and lung mets…I had no treatment options! None. Until I found my trial.

So….it is very difficult, I think, for folks in that particular segment of our world. Stage IV folks have had to practice up (most of the time). Stage III folks feel like they have been handed a death sentence and had treatment purposely withheld. A lot of us understand. I rant so often about the lack of adjuvant care on my blog that it is a wonder that folks still read those posts! Many of us here try to let folks know their stats that, despite everything, remain pretty good in regard to progression, the treatment choices that exist (the good, the bad, and the ugly), as well as future treatments they have access to should they ever need them. We will also try to get those who are clearly tremendously upset, to calm down, take a breath, and live each day they currently have. Not because we just want them to hush up. Not because we don't know how they feel. No…it is because we do!!  And often….someone else showed us they way…and helped US learn to breathe again.

You have provided a great deal of support to many here. Should you go, you would be missed. However, you had previously mentioned your desire to enjoy your fall, manage your care as planned, and re-assess when you must.  As before, I still say…"Breathe deep, seek peace." I wish you well. Celeste