advise please

I do not think that there are any 'stupid' or 'wrong' decisions. It is your life and it is up to you how you live it.

Do you have a clear idea what is likely to happen over the next year if you stop treatment? Could you have a consultation with a palliative care specialist? Or a psychologist specialisting in helping people with life-limiting conditions?

Do you have to make the decision about the temodal now? Could you delay for a while? Is there any chance that side effects of the temodal will be less than those of the dacarbazine?

I, personally, believe that quality is more important than quantity. However, judging that quality is a very personal thing.

Thinking of you.

I do not think that there are any 'stupid' or 'wrong' decisions. It is your life and it is up to you how you live it.

Do you have a clear idea what is likely to happen over the next year if you stop treatment? Could you have a consultation with a palliative care specialist? Or a psychologist specialisting in helping people with life-limiting conditions?

Do you have to make the decision about the temodal now? Could you delay for a while? Is there any chance that side effects of the temodal will be less than those of the dacarbazine?

I, personally, believe that quality is more important than quantity. However, judging that quality is a very personal thing.

Thinking of you.

I do not think that there are any 'stupid' or 'wrong' decisions. It is your life and it is up to you how you live it.

Do you have a clear idea what is likely to happen over the next year if you stop treatment? Could you have a consultation with a palliative care specialist? Or a psychologist specialisting in helping people with life-limiting conditions?

Do you have to make the decision about the temodal now? Could you delay for a while? Is there any chance that side effects of the temodal will be less than those of the dacarbazine?

I, personally, believe that quality is more important than quantity. However, judging that quality is a very personal thing.

Thinking of you.

Hey Ninni,

So sorry for all that you have been through.  All our decisions are extremely personal in how we approach melanoma treatment.  You have certainly given all the conventional options a shot.  Whatever you decide to do now is more than okay and far from stupid!!!  One additional thing I can think of (and given all you have done…you've probably had this done) is having your tumor analysed.  Not just for BRAF (for which I am assuming you are negative)…but for things like HER-2 and CKIT.  Sometimes in melanoma, especially when it responds to none of the conventional things, folks are dealing with a different mutation.  Here's an example of someone who finally had that done and is responding to TDM1 after trying a boatload of other things.  https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/tdm1-working

There are also PAN-RAF inhibitors that work for all BRAF types.

If your tumor is NRAS mutated, Sosman has been doing some work in Nashville that combines CDK-4 inhibitors with MEK inhibitors for a 33% repsonse rate.

There are IDO inhibitors….sometimes combined with anti-PD1 (one study used pembro).

There are anti-body drug conjugates…where a potent chemo agent is linked to an antibody to that it goes straight to the tumor like a Trogan horse and only releases there so that the patient doesn't deal with the toxic effects of the chemo…but the tumor does.  I think they are promising…but they are new in melanoma world…and a friend of mine dealt with a lot more chemo "leakage" than had been hoped, but he is also certain it gave him a year of stability.

Some folks with melanoma bone mets have been helped by being treated with bisphonates.

I'll keep thinking….  There is more info and studies related to most of these on my blog if you are interested.  I am not saying you 'should' do any of these things…but they might be worth talking to your doc about.  I wish you my best with whatever you decide.  Celeste

Hey Ninni,

So sorry for all that you have been through.  All our decisions are extremely personal in how we approach melanoma treatment.  You have certainly given all the conventional options a shot.  Whatever you decide to do now is more than okay and far from stupid!!!  One additional thing I can think of (and given all you have done…you've probably had this done) is having your tumor analysed.  Not just for BRAF (for which I am assuming you are negative)…but for things like HER-2 and CKIT.  Sometimes in melanoma, especially when it responds to none of the conventional things, folks are dealing with a different mutation.  Here's an example of someone who finally had that done and is responding to TDM1 after trying a boatload of other things.  https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/tdm1-working

There are also PAN-RAF inhibitors that work for all BRAF types.

If your tumor is NRAS mutated, Sosman has been doing some work in Nashville that combines CDK-4 inhibitors with MEK inhibitors for a 33% repsonse rate.

There are IDO inhibitors….sometimes combined with anti-PD1 (one study used pembro).

There are anti-body drug conjugates…where a potent chemo agent is linked to an antibody to that it goes straight to the tumor like a Trogan horse and only releases there so that the patient doesn't deal with the toxic effects of the chemo…but the tumor does.  I think they are promising…but they are new in melanoma world…and a friend of mine dealt with a lot more chemo "leakage" than had been hoped, but he is also certain it gave him a year of stability.

Some folks with melanoma bone mets have been helped by being treated with bisphonates.

I'll keep thinking….  There is more info and studies related to most of these on my blog if you are interested.  I am not saying you 'should' do any of these things…but they might be worth talking to your doc about.  I wish you my best with whatever you decide.  Celeste

Hey Ninni,

So sorry for all that you have been through.  All our decisions are extremely personal in how we approach melanoma treatment.  You have certainly given all the conventional options a shot.  Whatever you decide to do now is more than okay and far from stupid!!!  One additional thing I can think of (and given all you have done…you've probably had this done) is having your tumor analysed.  Not just for BRAF (for which I am assuming you are negative)…but for things like HER-2 and CKIT.  Sometimes in melanoma, especially when it responds to none of the conventional things, folks are dealing with a different mutation.  Here's an example of someone who finally had that done and is responding to TDM1 after trying a boatload of other things.  https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/tdm1-working

There are also PAN-RAF inhibitors that work for all BRAF types.

If your tumor is NRAS mutated, Sosman has been doing some work in Nashville that combines CDK-4 inhibitors with MEK inhibitors for a 33% repsonse rate.

There are IDO inhibitors….sometimes combined with anti-PD1 (one study used pembro).

There are anti-body drug conjugates…where a potent chemo agent is linked to an antibody to that it goes straight to the tumor like a Trogan horse and only releases there so that the patient doesn't deal with the toxic effects of the chemo…but the tumor does.  I think they are promising…but they are new in melanoma world…and a friend of mine dealt with a lot more chemo "leakage" than had been hoped, but he is also certain it gave him a year of stability.

Some folks with melanoma bone mets have been helped by being treated with bisphonates.

I'll keep thinking….  There is more info and studies related to most of these on my blog if you are interested.  I am not saying you 'should' do any of these things…but they might be worth talking to your doc about.  I wish you my best with whatever you decide.  Celeste