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- This topic has 12 replies, 4 voices, and was last updated 10 years, 2 months ago by
pigs_sty.
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- March 8, 2014 at 1:33 am
Hi all,
My wife has recently been diagnosed with stage IV (small met in brain, few in liver). We have just started on Vemurafinib but to me this is only the first stage. I am looking for advice on further treatments or anything we could add to the Vem.
We are based in the UK so I'd love to hear from any other UK sufferers on what treatments you have had and are available in this country. I have been doing some research and it seems Christies in Manchester has some very postive treatments, including ACT.
We are seeing a Melanoma specialist in Newcastle on Monday with the hope of trials and other treatments.
Any advice / help / information is much appreciated.
Thanks.
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- March 8, 2014 at 1:10 pm
As you probably know, treatment options and treatment protocols are different in the US than they are in England. In the States, BRAF inhibitors like vemurafenib are not usually the first thing an oncologist will prescribe. With a low tumor burden (one in the brain and a few in the liver) the doctors here will usually recommend surgical or stereotactic radiosurgery (i.e., Gamma Knife or Cyber Knife) treatment of the brain met followed by an immune-based "checkpoint" therapy like Yervoy or anti-PD1. This is done because, while the BRAF inhibitors work quickly, melanoma tends to become resistant to them within 6-9 months. The remissions resulting from fadiation and chickpoint inhibitors tends to last much longer.
When BRAF inhibitors are used, doctors in the US are beginning to prescribe a combination of a BRAF inhibitor (Tafinlar) plus a MEK inhibitor (Mekinist) rather than just a BRAF inhibitor alone. Experience has shown that the combo is more effective in more people and results in fewer side effects than a BRAF inhibitor alone.
When you meet with your melanoma specialist, you might discuss with him/her the possibility of treatment the brain met directly and immediately. Then investigate clinical trials of anti-PD1 or anti-PD-L1 either alone or in combination with Yervoy. Yervoy itself may already have been approved by NICE and that might be an option, too.
I suggest that you post this question on the melanoma forum at the Melanoma International Foundation web site. They have a lot of international members including many from England and Europe. Perhaps they will be able to give you better advice about treatment options and melanoma spescialty centers in your area.
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- March 8, 2014 at 11:35 pm
HiI am receiving treatment in the UK and was immediately put on vem. I think this is the standard practice for the UK if you are tested Braf positive. I was told that we do not do any radiotherapy until it is needed. Have you heard of a group called melanomamates on Facebook. They will be able to provide you with lots of help and advice you need x
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- March 8, 2014 at 11:35 pm
HiI am receiving treatment in the UK and was immediately put on vem. I think this is the standard practice for the UK if you are tested Braf positive. I was told that we do not do any radiotherapy until it is needed. Have you heard of a group called melanomamates on Facebook. They will be able to provide you with lots of help and advice you need x
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- March 8, 2014 at 11:35 pm
HiI am receiving treatment in the UK and was immediately put on vem. I think this is the standard practice for the UK if you are tested Braf positive. I was told that we do not do any radiotherapy until it is needed. Have you heard of a group called melanomamates on Facebook. They will be able to provide you with lots of help and advice you need x
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- March 9, 2014 at 4:25 pm
This is exactly how I also understand they typically do in the USA. Also I would add having a untreated brain met typically disqualifies from the PD1 type trials I've read about so gamma knife is typical for it. I say gamma rather than cyber because gamma has a .3 mm accuracy whereas cyber is 1 mm at least on the specifications I read about.
However the zelboraf(vemurafenib) has proved very affective and very quick for many people according to my dr.
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- March 14, 2014 at 6:55 pm
Thanks for the replies. We spoke to a melanoma specialist in Newcastle at the beggining of this week. She has advised us to stay on the Vem alone for now with close monitoring. Hopefully this will control the disease for now, with the hope of ACT/TIL in the future alsongside PD-1.
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- March 14, 2014 at 6:55 pm
Thanks for the replies. We spoke to a melanoma specialist in Newcastle at the beggining of this week. She has advised us to stay on the Vem alone for now with close monitoring. Hopefully this will control the disease for now, with the hope of ACT/TIL in the future alsongside PD-1.
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- March 14, 2014 at 6:55 pm
Thanks for the replies. We spoke to a melanoma specialist in Newcastle at the beggining of this week. She has advised us to stay on the Vem alone for now with close monitoring. Hopefully this will control the disease for now, with the hope of ACT/TIL in the future alsongside PD-1.
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- March 9, 2014 at 4:25 pm
This is exactly how I also understand they typically do in the USA. Also I would add having a untreated brain met typically disqualifies from the PD1 type trials I've read about so gamma knife is typical for it. I say gamma rather than cyber because gamma has a .3 mm accuracy whereas cyber is 1 mm at least on the specifications I read about.
However the zelboraf(vemurafenib) has proved very affective and very quick for many people according to my dr.
-
- March 9, 2014 at 4:25 pm
This is exactly how I also understand they typically do in the USA. Also I would add having a untreated brain met typically disqualifies from the PD1 type trials I've read about so gamma knife is typical for it. I say gamma rather than cyber because gamma has a .3 mm accuracy whereas cyber is 1 mm at least on the specifications I read about.
However the zelboraf(vemurafenib) has proved very affective and very quick for many people according to my dr.
-
- March 8, 2014 at 1:10 pm
As you probably know, treatment options and treatment protocols are different in the US than they are in England. In the States, BRAF inhibitors like vemurafenib are not usually the first thing an oncologist will prescribe. With a low tumor burden (one in the brain and a few in the liver) the doctors here will usually recommend surgical or stereotactic radiosurgery (i.e., Gamma Knife or Cyber Knife) treatment of the brain met followed by an immune-based "checkpoint" therapy like Yervoy or anti-PD1. This is done because, while the BRAF inhibitors work quickly, melanoma tends to become resistant to them within 6-9 months. The remissions resulting from fadiation and chickpoint inhibitors tends to last much longer.
When BRAF inhibitors are used, doctors in the US are beginning to prescribe a combination of a BRAF inhibitor (Tafinlar) plus a MEK inhibitor (Mekinist) rather than just a BRAF inhibitor alone. Experience has shown that the combo is more effective in more people and results in fewer side effects than a BRAF inhibitor alone.
When you meet with your melanoma specialist, you might discuss with him/her the possibility of treatment the brain met directly and immediately. Then investigate clinical trials of anti-PD1 or anti-PD-L1 either alone or in combination with Yervoy. Yervoy itself may already have been approved by NICE and that might be an option, too.
I suggest that you post this question on the melanoma forum at the Melanoma International Foundation web site. They have a lot of international members including many from England and Europe. Perhaps they will be able to give you better advice about treatment options and melanoma spescialty centers in your area.
-
- March 8, 2014 at 1:10 pm
As you probably know, treatment options and treatment protocols are different in the US than they are in England. In the States, BRAF inhibitors like vemurafenib are not usually the first thing an oncologist will prescribe. With a low tumor burden (one in the brain and a few in the liver) the doctors here will usually recommend surgical or stereotactic radiosurgery (i.e., Gamma Knife or Cyber Knife) treatment of the brain met followed by an immune-based "checkpoint" therapy like Yervoy or anti-PD1. This is done because, while the BRAF inhibitors work quickly, melanoma tends to become resistant to them within 6-9 months. The remissions resulting from fadiation and chickpoint inhibitors tends to last much longer.
When BRAF inhibitors are used, doctors in the US are beginning to prescribe a combination of a BRAF inhibitor (Tafinlar) plus a MEK inhibitor (Mekinist) rather than just a BRAF inhibitor alone. Experience has shown that the combo is more effective in more people and results in fewer side effects than a BRAF inhibitor alone.
When you meet with your melanoma specialist, you might discuss with him/her the possibility of treatment the brain met directly and immediately. Then investigate clinical trials of anti-PD1 or anti-PD-L1 either alone or in combination with Yervoy. Yervoy itself may already have been approved by NICE and that might be an option, too.
I suggest that you post this question on the melanoma forum at the Melanoma International Foundation web site. They have a lot of international members including many from England and Europe. Perhaps they will be able to give you better advice about treatment options and melanoma spescialty centers in your area.
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