no hope

Hello,  others on here will have better medical information about treatment options but i just wanted to reach out and give you a virtual hug.  I can only imagine what you are going through and I "hope" that hope will find you soon.  Many prayers and hugs for you. 

Hello,  others on here will have better medical information about treatment options but i just wanted to reach out and give you a virtual hug.  I can only imagine what you are going through and I "hope" that hope will find you soon.  Many prayers and hugs for you. 

Hello,  others on here will have better medical information about treatment options but i just wanted to reach out and give you a virtual hug.  I can only imagine what you are going through and I "hope" that hope will find you soon.  Many prayers and hugs for you. 

Don't assume all immunotherapies take a long time to work.  Ipi can have a delayed responses but some respond very quickly.  Most people who respond to the Anti-PD1 drugs have a response by the first 8 to 12 week scan.  The 10% chance of working seems a little low for the top two immunotherapy drugs.  Don't quote me but I think Ipi is around 25% response and the Anti-PD1 drugs are about 45% response rate. 

Can you give the forum a little more specifics on your case?  Where are you being treated?  Have you been to a melanoma specialist.  Have you considered clinical trials?  The more you can provide the more people on here can help. 

I obviously can't promise you everything is going to be alright but I can tell you there are members on this forum that have been exactly where you are and their doing great now.  Hope is a powerful thing and you want to hold on to that as long as you can.

Brian

Don't assume all immunotherapies take a long time to work.  Ipi can have a delayed responses but some respond very quickly.  Most people who respond to the Anti-PD1 drugs have a response by the first 8 to 12 week scan.  The 10% chance of working seems a little low for the top two immunotherapy drugs.  Don't quote me but I think Ipi is around 25% response and the Anti-PD1 drugs are about 45% response rate. 

Can you give the forum a little more specifics on your case?  Where are you being treated?  Have you been to a melanoma specialist.  Have you considered clinical trials?  The more you can provide the more people on here can help. 

I obviously can't promise you everything is going to be alright but I can tell you there are members on this forum that have been exactly where you are and their doing great now.  Hope is a powerful thing and you want to hold on to that as long as you can.

Brian

Don't assume all immunotherapies take a long time to work.  Ipi can have a delayed responses but some respond very quickly.  Most people who respond to the Anti-PD1 drugs have a response by the first 8 to 12 week scan.  The 10% chance of working seems a little low for the top two immunotherapy drugs.  Don't quote me but I think Ipi is around 25% response and the Anti-PD1 drugs are about 45% response rate. 

Can you give the forum a little more specifics on your case?  Where are you being treated?  Have you been to a melanoma specialist.  Have you considered clinical trials?  The more you can provide the more people on here can help. 

I obviously can't promise you everything is going to be alright but I can tell you there are members on this forum that have been exactly where you are and their doing great now.  Hope is a powerful thing and you want to hold on to that as long as you can.

Brian

Wow. That must be devastating. I failed vem on the first scan everything was growing.

However when I did the Tafinlar/Mekenist combo the first scan showed most of the tumors had stopped growing. It sounds like you haven't tried that combo yet so it might be worth while to try it so hopefully it slows the stuff down to get you to the next treatment.

What that next treatment would be I'm not sure. I know one person on here said the doctor was having them do the combo kind of while they were doing yervoy. It was something like stop the combo 5 days before getting yervoy dose and start again 2 days after. Certainly something to ask the doctor about.

Hope that helps some. Good luck to you.

Artie

Wow. That must be devastating. I failed vem on the first scan everything was growing.

However when I did the Tafinlar/Mekenist combo the first scan showed most of the tumors had stopped growing. It sounds like you haven't tried that combo yet so it might be worth while to try it so hopefully it slows the stuff down to get you to the next treatment.

What that next treatment would be I'm not sure. I know one person on here said the doctor was having them do the combo kind of while they were doing yervoy. It was something like stop the combo 5 days before getting yervoy dose and start again 2 days after. Certainly something to ask the doctor about.

Hope that helps some. Good luck to you.

Artie

Wow. That must be devastating. I failed vem on the first scan everything was growing.

However when I did the Tafinlar/Mekenist combo the first scan showed most of the tumors had stopped growing. It sounds like you haven't tried that combo yet so it might be worth while to try it so hopefully it slows the stuff down to get you to the next treatment.

What that next treatment would be I'm not sure. I know one person on here said the doctor was having them do the combo kind of while they were doing yervoy. It was something like stop the combo 5 days before getting yervoy dose and start again 2 days after. Certainly something to ask the doctor about.

Hope that helps some. Good luck to you.

Artie

Take the advice given above and share with us what is going on in more detail. Every time I think I know about all the treatment options I read about something new on the forum. Stage 4 can be a real scary place at the beginning. I for one had a response to Cyber Knife brain radiation and a clincial trial of Ipi and Nivolumab. The first few months were crazy with fear of the unknown but it changed for me and many others, with the new treatments that are available.  Ed

Take the advice given above and share with us what is going on in more detail. Every time I think I know about all the treatment options I read about something new on the forum. Stage 4 can be a real scary place at the beginning. I for one had a response to Cyber Knife brain radiation and a clincial trial of Ipi and Nivolumab. The first few months were crazy with fear of the unknown but it changed for me and many others, with the new treatments that are available.  Ed

Take the advice given above and share with us what is going on in more detail. Every time I think I know about all the treatment options I read about something new on the forum. Stage 4 can be a real scary place at the beginning. I for one had a response to Cyber Knife brain radiation and a clincial trial of Ipi and Nivolumab. The first few months were crazy with fear of the unknown but it changed for me and many others, with the new treatments that are available.  Ed

Oh, sweetie…

So many of us here understand how you feel…really! You need a melanoma specialist if you don't have one. Ed and Artie and the others are right. Look into stereotactic radiation for the brain mets. See what your options are for keytruda (pembrolizumab, the newly FDA approved Merck anti-PD1 product) or a variety of trials offering the nivolumumab (BMS anti-PD1 product) combined with ipi. I know it feels overwhelming. I know it feels as though you have no options. But you do. You really do.

Hang in there. Celeste

Oh, sweetie…

So many of us here understand how you feel…really! You need a melanoma specialist if you don't have one. Ed and Artie and the others are right. Look into stereotactic radiation for the brain mets. See what your options are for keytruda (pembrolizumab, the newly FDA approved Merck anti-PD1 product) or a variety of trials offering the nivolumumab (BMS anti-PD1 product) combined with ipi. I know it feels overwhelming. I know it feels as though you have no options. But you do. You really do.

Hang in there. Celeste

Oh, sweetie…

So many of us here understand how you feel…really! You need a melanoma specialist if you don't have one. Ed and Artie and the others are right. Look into stereotactic radiation for the brain mets. See what your options are for keytruda (pembrolizumab, the newly FDA approved Merck anti-PD1 product) or a variety of trials offering the nivolumumab (BMS anti-PD1 product) combined with ipi. I know it feels overwhelming. I know it feels as though you have no options. But you do. You really do.

Hang in there. Celeste

Hi,

What i can tell you about that is that hope is something that you never loose, even when you think that it happened. Im also stage iv and sometimes i fell so sad about my future, all of us feel this, for sure. But the only thing you can do is focus on your treatment options and hope that one of them is going to work for you. Don think that 10% or 15% or 5 % are bad percentage, some of us, including myself, are here from stage 1 with around 90% of not be here never. Just is important to be this time in the right side of the river. Who cares about efficacy of 90% of a treatment if you are in that 10%? You can find here many lucky people with succes in this journey and you can be one of them, dont have any doubt about it.

My best whises to you 

Jualonso

Hi,

What i can tell you about that is that hope is something that you never loose, even when you think that it happened. Im also stage iv and sometimes i fell so sad about my future, all of us feel this, for sure. But the only thing you can do is focus on your treatment options and hope that one of them is going to work for you. Don think that 10% or 15% or 5 % are bad percentage, some of us, including myself, are here from stage 1 with around 90% of not be here never. Just is important to be this time in the right side of the river. Who cares about efficacy of 90% of a treatment if you are in that 10%? You can find here many lucky people with succes in this journey and you can be one of them, dont have any doubt about it.

My best whises to you 

Jualonso

Hi,

What i can tell you about that is that hope is something that you never loose, even when you think that it happened. Im also stage iv and sometimes i fell so sad about my future, all of us feel this, for sure. But the only thing you can do is focus on your treatment options and hope that one of them is going to work for you. Don think that 10% or 15% or 5 % are bad percentage, some of us, including myself, are here from stage 1 with around 90% of not be here never. Just is important to be this time in the right side of the river. Who cares about efficacy of 90% of a treatment if you are in that 10%? You can find here many lucky people with succes in this journey and you can be one of them, dont have any doubt about it.

My best whises to you 

Jualonso

Look into cannabis oil..I've been reading a lot about it and if it was legal in my state i'd be on it right now..

Look into cannabis oil..I've been reading a lot about it and if it was legal in my state i'd be on it right now..

Look into cannabis oil..I've been reading a lot about it and if it was legal in my state i'd be on it right now..

One treatment I don't think has been mentioned is Temodar (temozolomide). It's an oral chemo drug in pill form. It's sometimes prescribed to melanoma patients with brain tumors because it crosses the blood brain barrier. This is from an old article from 2007, before all the new treatments came on the scene. "Temozolomide appeared to have superior activity in the CNS and produced objective responses in the brain. Likewise, Bafaloukos et al reported antitumor activity in the CNS and a regression in brain metastases." 

Don't lose hope. But we do hear your experience of what you are feeling and where things seem to be at. What you're feeling is more than understandable. It's something that all of us who are beyond stage 1 know could be a possibility at some point.

If you haven't already, you may want to do some things like getting your affairs in order. Perhaps look into palliative care and hospice options nearby to be prepared if you will need it. Perhaps look for end-of-life counseling, faith-based or otherwise. One place I visited that was the most helpful to me, focuses on building more positive beliefs, that contemplating the worst scenario still still can also be seen like the next step in a journey. While the culture says we'e supposed to think and feel certain things, if out of options, there is still the option of attempting to change the arc of what we're supposed to feel at this stage. 

It sucks being precluded from almost all clinical trials. It sucks if your doctors are telling you they're out of treatments (is that what NHS is saying?) It sucks if second opinions are hard to come by in the NHS system.

Are you being offered IPI or are the doctors the ones saying it takes too long? Temodar would also be something to ask them about.

Best wishes. Kyle

One treatment I don't think has been mentioned is Temodar (temozolomide). It's an oral chemo drug in pill form. It's sometimes prescribed to melanoma patients with brain tumors because it crosses the blood brain barrier. This is from an old article from 2007, before all the new treatments came on the scene. "Temozolomide appeared to have superior activity in the CNS and produced objective responses in the brain. Likewise, Bafaloukos et al reported antitumor activity in the CNS and a regression in brain metastases." 

Don't lose hope. But we do hear your experience of what you are feeling and where things seem to be at. What you're feeling is more than understandable. It's something that all of us who are beyond stage 1 know could be a possibility at some point.

If you haven't already, you may want to do some things like getting your affairs in order. Perhaps look into palliative care and hospice options nearby to be prepared if you will need it. Perhaps look for end-of-life counseling, faith-based or otherwise. One place I visited that was the most helpful to me, focuses on building more positive beliefs, that contemplating the worst scenario still still can also be seen like the next step in a journey. While the culture says we'e supposed to think and feel certain things, if out of options, there is still the option of attempting to change the arc of what we're supposed to feel at this stage. 

It sucks being precluded from almost all clinical trials. It sucks if your doctors are telling you they're out of treatments (is that what NHS is saying?) It sucks if second opinions are hard to come by in the NHS system.

Are you being offered IPI or are the doctors the ones saying it takes too long? Temodar would also be something to ask them about.

Best wishes. Kyle

One treatment I don't think has been mentioned is Temodar (temozolomide). It's an oral chemo drug in pill form. It's sometimes prescribed to melanoma patients with brain tumors because it crosses the blood brain barrier. This is from an old article from 2007, before all the new treatments came on the scene. "Temozolomide appeared to have superior activity in the CNS and produced objective responses in the brain. Likewise, Bafaloukos et al reported antitumor activity in the CNS and a regression in brain metastases." 

Don't lose hope. But we do hear your experience of what you are feeling and where things seem to be at. What you're feeling is more than understandable. It's something that all of us who are beyond stage 1 know could be a possibility at some point.

If you haven't already, you may want to do some things like getting your affairs in order. Perhaps look into palliative care and hospice options nearby to be prepared if you will need it. Perhaps look for end-of-life counseling, faith-based or otherwise. One place I visited that was the most helpful to me, focuses on building more positive beliefs, that contemplating the worst scenario still still can also be seen like the next step in a journey. While the culture says we'e supposed to think and feel certain things, if out of options, there is still the option of attempting to change the arc of what we're supposed to feel at this stage. 

It sucks being precluded from almost all clinical trials. It sucks if your doctors are telling you they're out of treatments (is that what NHS is saying?) It sucks if second opinions are hard to come by in the NHS system.

Are you being offered IPI or are the doctors the ones saying it takes too long? Temodar would also be something to ask them about.

Best wishes. Kyle