Uveal Melanoma metastized

Sorry to hear your news.

Might be worth looking at this 

https://clinicaltrials.gov/ct2/results?term=uveal+melanoma&recr=Open&type=&rslt=&age_v=&gndr=&cond=&intr=&titles=&outc=&spons=&lead=&id=&state1=&cntry1=&state2=&cntry2=&state3=&cntry3=&locn=&rcv_s=&rcv_e=&lup_s=&lup_e=

Trial 5 might be of interest.

You can refine the search by location under the advanced tab. 

Best wishes to you all

Deb

Sorry to hear your news.

Might be worth looking at this 

https://clinicaltrials.gov/ct2/results?term=uveal+melanoma&recr=Open&type=&rslt=&age_v=&gndr=&cond=&intr=&titles=&outc=&spons=&lead=&id=&state1=&cntry1=&state2=&cntry2=&state3=&cntry3=&locn=&rcv_s=&rcv_e=&lup_s=&lup_e=

Trial 5 might be of interest.

You can refine the search by location under the advanced tab. 

Best wishes to you all

Deb

Sorry to hear your news.

Might be worth looking at this 

https://clinicaltrials.gov/ct2/results?term=uveal+melanoma&recr=Open&type=&rslt=&age_v=&gndr=&cond=&intr=&titles=&outc=&spons=&lead=&id=&state1=&cntry1=&state2=&cntry2=&state3=&cntry3=&locn=&rcv_s=&rcv_e=&lup_s=&lup_e=

Trial 5 might be of interest.

You can refine the search by location under the advanced tab. 

Best wishes to you all

Deb

Hi Anon,

I'm sorry your brother is going through this.  It sounds like he is blessed with a loving and caring sister. 

I don't know much about where you're at or where your brother is at (this is the downside of posting Anon), so it's tough to give you much advice. Sorry.

The questions I'd have are:

Is your brother being seen by a melanoma specialist? Someone who sees hundreds (thousands) of melanoma patients and is able to keep up with the (very new) research?  A lot has changed in the melanoma world in 16 years.  A general oncologist possibly hasn't kept up with the very specific melanoma research and drug break throughs.

Has your brother tried the the newer imunitherapy drugs (like Ipi, Pembro, or Opdivo?).  If not, why not?  These drugs don't work quickly, but when they work they're amazing and can be a homerun for some melanoma patients.

Finally, why can't he join a clinical trial?  There are many melanoma clinical trials with various requirements.  Many don't require B-RAF positive status.  Are you in a place where you have access to clinical trials?

I'm not familiar with 10 Madar. 

Sorry I'm not more help.  

Shalom to you and your brother,

Julie

Hi Anon,

I'm sorry your brother is going through this.  It sounds like he is blessed with a loving and caring sister. 

I don't know much about where you're at or where your brother is at (this is the downside of posting Anon), so it's tough to give you much advice. Sorry.

The questions I'd have are:

Is your brother being seen by a melanoma specialist? Someone who sees hundreds (thousands) of melanoma patients and is able to keep up with the (very new) research?  A lot has changed in the melanoma world in 16 years.  A general oncologist possibly hasn't kept up with the very specific melanoma research and drug break throughs.

Has your brother tried the the newer imunitherapy drugs (like Ipi, Pembro, or Opdivo?).  If not, why not?  These drugs don't work quickly, but when they work they're amazing and can be a homerun for some melanoma patients.

Finally, why can't he join a clinical trial?  There are many melanoma clinical trials with various requirements.  Many don't require B-RAF positive status.  Are you in a place where you have access to clinical trials?

I'm not familiar with 10 Madar. 

Sorry I'm not more help.  

Shalom to you and your brother,

Julie

Hi Anon,

I'm sorry your brother is going through this.  It sounds like he is blessed with a loving and caring sister. 

I don't know much about where you're at or where your brother is at (this is the downside of posting Anon), so it's tough to give you much advice. Sorry.

The questions I'd have are:

Is your brother being seen by a melanoma specialist? Someone who sees hundreds (thousands) of melanoma patients and is able to keep up with the (very new) research?  A lot has changed in the melanoma world in 16 years.  A general oncologist possibly hasn't kept up with the very specific melanoma research and drug break throughs.

Has your brother tried the the newer imunitherapy drugs (like Ipi, Pembro, or Opdivo?).  If not, why not?  These drugs don't work quickly, but when they work they're amazing and can be a homerun for some melanoma patients.

Finally, why can't he join a clinical trial?  There are many melanoma clinical trials with various requirements.  Many don't require B-RAF positive status.  Are you in a place where you have access to clinical trials?

I'm not familiar with 10 Madar. 

Sorry I'm not more help.  

Shalom to you and your brother,

Julie

I am sorry to hear that your brother is going through this. Others have posted some good questions, but I might be able to flesh them out a bit.

Uveal melanoma is a cancer of melanocytes in the eye. It is melanoma, in the sense that it involves melanocytes, but genetically it is very different from cutaneous (skin) melanoma. For example, about 50% of cutaneous melanomas have the BRAF mutation, but that mutation never occurs in uveal melanoma.

The first step it to be sure that your brother is being seen by someone who treats uveal melanoma. If you let me know where he lives I may be able to suggest a treatment center. You may email me directly at [email protected].

Second, Temodar (temozolamide) doesn't seem effective against uveal melanoma. It is only marginally effective in cutaneous melanoma, but in uveal seems worse. 

So, what are the choices? Some people are using what is called a MEK inhibitor. Early results were promising, but a larger study didn't do very well so the reviews are mixed.

One or two places are using sumetinib, or Sutent. Again, the results are mixed.

Some of the new immunotherapy drugs seem to help in metastatic uveal melanoma. The response rates are not as good as in cutaneous melanoma, but are still pretty encouraging. I know of at least one person who had great response from a combination called "ipi/nivo". This is a protocol that combines two drugs–Yervoy (ipilumimab) and Opdivo (nivolumab). 

Hope this helps.

Tim–MRF

I am sorry to hear that your brother is going through this. Others have posted some good questions, but I might be able to flesh them out a bit.

Uveal melanoma is a cancer of melanocytes in the eye. It is melanoma, in the sense that it involves melanocytes, but genetically it is very different from cutaneous (skin) melanoma. For example, about 50% of cutaneous melanomas have the BRAF mutation, but that mutation never occurs in uveal melanoma.

The first step it to be sure that your brother is being seen by someone who treats uveal melanoma. If you let me know where he lives I may be able to suggest a treatment center. You may email me directly at [email protected].

Second, Temodar (temozolamide) doesn't seem effective against uveal melanoma. It is only marginally effective in cutaneous melanoma, but in uveal seems worse. 

So, what are the choices? Some people are using what is called a MEK inhibitor. Early results were promising, but a larger study didn't do very well so the reviews are mixed.

One or two places are using sumetinib, or Sutent. Again, the results are mixed.

Some of the new immunotherapy drugs seem to help in metastatic uveal melanoma. The response rates are not as good as in cutaneous melanoma, but are still pretty encouraging. I know of at least one person who had great response from a combination called "ipi/nivo". This is a protocol that combines two drugs–Yervoy (ipilumimab) and Opdivo (nivolumab). 

Hope this helps.

Tim–MRF

I am sorry to hear that your brother is going through this. Others have posted some good questions, but I might be able to flesh them out a bit.

Uveal melanoma is a cancer of melanocytes in the eye. It is melanoma, in the sense that it involves melanocytes, but genetically it is very different from cutaneous (skin) melanoma. For example, about 50% of cutaneous melanomas have the BRAF mutation, but that mutation never occurs in uveal melanoma.

The first step it to be sure that your brother is being seen by someone who treats uveal melanoma. If you let me know where he lives I may be able to suggest a treatment center. You may email me directly at [email protected].

Second, Temodar (temozolamide) doesn't seem effective against uveal melanoma. It is only marginally effective in cutaneous melanoma, but in uveal seems worse. 

So, what are the choices? Some people are using what is called a MEK inhibitor. Early results were promising, but a larger study didn't do very well so the reviews are mixed.

One or two places are using sumetinib, or Sutent. Again, the results are mixed.

Some of the new immunotherapy drugs seem to help in metastatic uveal melanoma. The response rates are not as good as in cutaneous melanoma, but are still pretty encouraging. I know of at least one person who had great response from a combination called "ipi/nivo". This is a protocol that combines two drugs–Yervoy (ipilumimab) and Opdivo (nivolumab). 

Hope this helps.

Tim–MRF

Sorry for what you and your brother are dealing with. Tim is exactly right.  I suspect your brother has been given Temodar (a form of dacarbazine) that is not very effective in melanoma.  Since your brother is not BRAF positive, it is true that BRAF inhibitors would not be effective.  It is also true that while your basic garden variety of melanoma is hard to treat, sadly, uveal melanoma is even more difficult.  However, there are options!!!  The ipi/nivo combo that Tim mentioned is one….as well as drugs that are classified as MEK inhibitors.  They are often combined with BRAF inhibitors for BRAF positive patients, but have had some success when used alone in BRAF wild-type patients.

The first article in this post from a big cancer convention for specialists, points out using trametinib (a MEK inhibitor) alone or with digoxin to treat these folks:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-final-odds-and-endsa-study.html

So, while your brother is certainly in a tough spot… MEK inhibitors or the ipi/nivo combo do offer some hope for him.  Hang in there.  Yours, Celeste

Sorry for what you and your brother are dealing with. Tim is exactly right.  I suspect your brother has been given Temodar (a form of dacarbazine) that is not very effective in melanoma.  Since your brother is not BRAF positive, it is true that BRAF inhibitors would not be effective.  It is also true that while your basic garden variety of melanoma is hard to treat, sadly, uveal melanoma is even more difficult.  However, there are options!!!  The ipi/nivo combo that Tim mentioned is one….as well as drugs that are classified as MEK inhibitors.  They are often combined with BRAF inhibitors for BRAF positive patients, but have had some success when used alone in BRAF wild-type patients.

The first article in this post from a big cancer convention for specialists, points out using trametinib (a MEK inhibitor) alone or with digoxin to treat these folks:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-final-odds-and-endsa-study.html

So, while your brother is certainly in a tough spot… MEK inhibitors or the ipi/nivo combo do offer some hope for him.  Hang in there.  Yours, Celeste

Sorry for what you and your brother are dealing with. Tim is exactly right.  I suspect your brother has been given Temodar (a form of dacarbazine) that is not very effective in melanoma.  Since your brother is not BRAF positive, it is true that BRAF inhibitors would not be effective.  It is also true that while your basic garden variety of melanoma is hard to treat, sadly, uveal melanoma is even more difficult.  However, there are options!!!  The ipi/nivo combo that Tim mentioned is one….as well as drugs that are classified as MEK inhibitors.  They are often combined with BRAF inhibitors for BRAF positive patients, but have had some success when used alone in BRAF wild-type patients.

The first article in this post from a big cancer convention for specialists, points out using trametinib (a MEK inhibitor) alone or with digoxin to treat these folks:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-final-odds-and-endsa-study.html

So, while your brother is certainly in a tough spot… MEK inhibitors or the ipi/nivo combo do offer some hope for him.  Hang in there.  Yours, Celeste