AEB071 (SOTRQASTAURIN)

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1/9/2013 2:42pm
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Replies: 8

My brother has been offered a clinical trial for AEB071 at Dana Farber.  Has anyone with metatastic ocular melanoma tried this drug on a different clinical trial?  If so what were the side effects and was it successful?

Thanks, Anne

Chookapa - (1/14/2013 - 4:48am)

I am being treated with AEB071 - 400 mg. twice a day. I have stage 4 ocular melanoma which has spread to my lungs. I have been on the trial for 9 months. I had a CT scan on 21st December which showed no progression of my disease, and my oncologist says that he would have expected spread if I were not taking the medicine.

I live near London and am a patient of Dr. James Larkin at the Royal Marsden Hospital.

The side effects are real but not too serious. Constipation, treated with co-danthramer (25mg Dantron and 200mg Pploxame) once daily. Mild nausea, controlled with anti emetics, and bright orange urine! I feel a bit tired, but whether this is due to the medicine or to my age (67) is hard to say. Much prererable to progressing disease, and I enjoy a high quality of life.

Go for it. I don't think that there is any other effective treatment for metastatic ocular melanoma, but the treatment is very specific to the mutation that is causing your cancer to spread, and I am probably very lucky to have the mutation(s) on which AEB071 is effective.

NameMax - (8/16/2013 - 6:29am)

Dear Chookapa

My mum also has been offered the treatment with AEB071 by Dr James Larkin at RMH.

Her eye has been removed 23 years ago and the cancer now came back and has spread to Lung and Liver.

My mum is 61 years old.

I would like to aks you please for an updated info on your treatment?

Since 21st December last year how are you feeling? Are you still being treated by AEB071?

Many thanks

Maxim

Anonymous - (8/16/2013 - 6:45am)

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.

 

NameMax - (8/16/2013 - 7:05am)

Hi

Thanks for your reply. I don't think Chookap has replied yet.

What type of Melanoma do you have? Has it originated from skin or eye?

Also at which hospital are you getting treatment?

I'll ask our consultant about ipilimumab to see what they say.

Thanks

lak - (8/17/2013 - 1:44pm)

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.

Chookapa - (1/14/2013 - 4:50am)

I am being treated with AEB071 - 400 mg. twice a day. I have stage 4 ocular melanoma which has spread to my lungs. I have been on the trial for 9 months. I had a CT scan on 21st December which showed no progression of my disease, and my oncologist says that he would have expected spread if I were not taking the medicine.

I live near London and am a patient of Dr. James Larkin at the Royal Marsden Hospital.

The side effects are real but not too serious. Constipation, treated with co-danthramer (25mg Dantron and 200mg Pploxame) once daily. Mild nausea, controlled with anti emetics, and bright orange urine! I feel a bit tired, but whether this is due to the medicine or to my age (67) is hard to say. Much prererable to progressing disease, and I enjoy a high quality of life.

Go for it. I don't think that there is any other effective treatment for metastatic ocular melanoma, but the treatment is very specific to the mutation that is causing your cancer to spread, and I am probably very lucky to have the mutation(s) on which AEB071 is effective.

Chookapa - (1/14/2013 - 4:50am)

I am being treated with AEB071 - 400 mg. twice a day. I have stage 4 ocular melanoma which has spread to my lungs. I have been on the trial for 9 months. I had a CT scan on 21st December which showed no progression of my disease, and my oncologist says that he would have expected spread if I were not taking the medicine.

I live near London and am a patient of Dr. James Larkin at the Royal Marsden Hospital.

The side effects are real but not too serious. Constipation, treated with co-danthramer (25mg Dantron and 200mg Pploxame) once daily. Mild nausea, controlled with anti emetics, and bright orange urine! I feel a bit tired, but whether this is due to the medicine or to my age (67) is hard to say. Much prererable to progressing disease, and I enjoy a high quality of life.

Go for it. I don't think that there is any other effective treatment for metastatic ocular melanoma, but the treatment is very specific to the mutation that is causing your cancer to spread, and I am probably very lucky to have the mutation(s) on which AEB071 is effective.

lak - (1/14/2013 - 6:43am)

Hi Chookapa,

 

I like Dr Larkin a lot. You are lucky to be under his care.  How were your mets discovered ?  Were you having regular screening?

It s really good to hear from someone about this drug - I have been watching it for a while.

 

Keep us informed.

 

Many thanks

Lesley UK.