lak

Margaret,

I did not reply in Feb as I had no knowledge. Could you share the expereince that you have had with this combination?

Lesley

Margaret,

I did not reply in Feb as I had no knowledge. Could you share the expereince that you have had with this combination?

Lesley

Margaret,

I did not reply in Feb as I had no knowledge. Could you share the expereince that you have had with this combination?

Lesley

Hi,

My small choroidal melanoma was treated in Liverpool and Clatterbridge. I was diagnosed xmas 2006. Liver resections were done in Leeds under Prof Lodge, further liver surgery at Southampton by Mr Pearce, Sirtex by Dr Stedman at southampton , ablation by Dr Breen at southampton. Ipilimumab from Prof Ottensmeier in Southampton . He suggested dtic first but refused and BMS allowed me into the compassianate use program of 2010. Then in 2013 I had it a second time but only managed 3 infusions due to side effects.

Which consultant is your mother under?

Have you been to the OcuMelUK web site charity for eye cancer in UK. The rarer cancer foundation is another charity which is good at helping you fight. As we are rare the same rules do not apply so we are meant to apply for funding using IFR s dr s dont like using them because they are unpredictable. but it is how I got funding for all my treatments. I became stage IV in 2009 and had 20+ liver tumours at one stage- last scans were clear.

There is no proven therapy but those who survive longer with mets tend to have followed immune therapies rather than chemo or just watching.

I find this forum hard to follow I cant see if Chookap;a has replied.

I have not had this drug I had ipilimumab and sirt and liver ablation i first became stage iv in 2009. I refused to have Dacarbazine DTIC as I did not find any evidence that it was effective. i had ipilimumab in 2010 and again this year in march. I feel very well just back from a 7m run!

I would really like a pd1 inhibitor there are trials for that in europe I think its Merks version.

I m so sorry you have had problems, I cannot understand what has happened to all the forums. I too shared my story so others may benefit from my decisions good or bad the future will tell us. I have no idea what went on here but I had my posts copied and used to discredit me , by what was meant to be a source of support for OM patients.

it did not used to be like this in 2007 when we were unified but there were fewer of us yet we knew far more.

I do hope these malicious events stop happening, I am sure that whatever happened to you was unrelated to me as I am in the UK and you I think are in the US. However there seems to be a similar problem across the water.

While we are divided we will not make a good patient group anywhere.

Hope things improve and you are comfortable with your decision for your treatment.

Good luck my fellow warrior.

I m so sorry you have had problems, I cannot understand what has happened to all the forums. I too shared my story so others may benefit from my decisions good or bad the future will tell us. I have no idea what went on here but I had my posts copied and used to discredit me , by what was meant to be a source of support for OM patients.

it did not used to be like this in 2007 when we were unified but there were fewer of us yet we knew far more.

I do hope these malicious events stop happening, I am sure that whatever happened to you was unrelated to me as I am in the UK and you I think are in the US. However there seems to be a similar problem across the water.

While we are divided we will not make a good patient group anywhere.

Hope things improve and you are comfortable with your decision for your treatment.

Good luck my fellow warrior.

I m so sorry you have had problems, I cannot understand what has happened to all the forums. I too shared my story so others may benefit from my decisions good or bad the future will tell us. I have no idea what went on here but I had my posts copied and used to discredit me , by what was meant to be a source of support for OM patients.

it did not used to be like this in 2007 when we were unified but there were fewer of us yet we knew far more.

I do hope these malicious events stop happening, I am sure that whatever happened to you was unrelated to me as I am in the UK and you I think are in the US. However there seems to be a similar problem across the water.

While we are divided we will not make a good patient group anywhere.

Hope things improve and you are comfortable with your decision for your treatment.

Good luck my fellow warrior.

Hi,

My small choroidal melanoma was treated in Liverpool and Clatterbridge. I was diagnosed xmas 2006. Liver resections were done in Leeds under Prof Lodge, further liver surgery at Southampton by Mr Pearce, Sirtex by Dr Stedman at southampton , ablation by Dr Breen at southampton. Ipilimumab from Prof Ottensmeier in Southampton . He suggested dtic first but refused and BMS allowed me into the compassianate use program of 2010. Then in 2013 I had it a second time but only managed 3 infusions due to side effects.

Which consultant is your mother under?

Have you been to the OcuMelUK web site charity for eye cancer in UK. The rarer cancer foundation is another charity which is good at helping you fight. As we are rare the same rules do not apply so we are meant to apply for funding using IFR s dr s dont like using them because they are unpredictable. but it is how I got funding for all my treatments. I became stage IV in 2009 and had 20+ liver tumours at one stage- last scans were clear.

There is no proven therapy but those who survive longer with mets tend to have followed immune therapies rather than chemo or just watching.

Hi,

My small choroidal melanoma was treated in Liverpool and Clatterbridge. I was diagnosed xmas 2006. Liver resections were done in Leeds under Prof Lodge, further liver surgery at Southampton by Mr Pearce, Sirtex by Dr Stedman at southampton , ablation by Dr Breen at southampton. Ipilimumab from Prof Ottensmeier in Southampton . He suggested dtic first but refused and BMS allowed me into the compassianate use program of 2010. Then in 2013 I had it a second time but only managed 3 infusions due to side effects.

Which consultant is your mother under?

Have you been to the OcuMelUK web site charity for eye cancer in UK. The rarer cancer foundation is another charity which is good at helping you fight. As we are rare the same rules do not apply so we are meant to apply for funding using IFR s dr s dont like using them because they are unpredictable. but it is how I got funding for all my treatments. I became stage IV in 2009 and had 20+ liver tumours at one stage- last scans were clear.

There is no proven therapy but those who survive longer with mets tend to have followed immune therapies rather than chemo or just watching.

I find this forum hard to follow I cant see if Chookap;a has replied.

I have not had this drug I had ipilimumab and sirt and liver ablation i first became stage iv in 2009. I refused to have Dacarbazine DTIC as I did not find any evidence that it was effective. i had ipilimumab in 2010 and again this year in march. I feel very well just back from a 7m run!

I would really like a pd1 inhibitor there are trials for that in europe I think its Merks version.

I find this forum hard to follow I cant see if Chookap;a has replied.

I have not had this drug I had ipilimumab and sirt and liver ablation i first became stage iv in 2009. I refused to have Dacarbazine DTIC as I did not find any evidence that it was effective. i had ipilimumab in 2010 and again this year in march. I feel very well just back from a 7m run!

I would really like a pd1 inhibitor there are trials for that in europe I think its Merks version.