The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Chookapa

Forum Replies Created

Viewing 8 reply threads
  • Replies
      Chookapa
      Participant

      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
      Participant

      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
      Participant

      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
      Participant

      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
      Participant

      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
      Participant

      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
      Participant

      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
      Participant

      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
      Participant

      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.

Viewing 8 reply threads
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

Popular Topics