Update 10 June – completed cycle 3 of Novartis BRAF/MEK inhibitor trial

Hi everyone,
I thought I would come back into this thread and keep it updated so I can report on the progress of this trial.

So 1 week in, and I am having no trouble at all with the meds ( apart from having to swallow 8 pills in the morning and 3 at night, I rattle!). I know the main side effects to look out for but none has arisen as yet.

It may be wishful thinking but I do believe the small sub-q bump that popped up on my thigh a couple of weeks back has reduced a little in size. I have no other external tumours that I can monitor.

I have had three of 5 radiation sessions to my eye, and it is improving, I am now able to open it quite well but it is not properly aligned yet and still gives me double vision if I try to look out both eyes at once, so the eye covering stays for now. I imagine the trial meds are helping it too.

I have all my review visits and test dates mapped out for the next 8 weeks so at least I can now plan my life a bit and work out when I can get back home for some time.

Best wishes to everyone fighting this beast!
Ally

Hi everyone,
I thought I would come back into this thread and keep it updated so I can report on the progress of this trial.

So 1 week in, and I am having no trouble at all with the meds ( apart from having to swallow 8 pills in the morning and 3 at night, I rattle!). I know the main side effects to look out for but none has arisen as yet.

It may be wishful thinking but I do believe the small sub-q bump that popped up on my thigh a couple of weeks back has reduced a little in size. I have no other external tumours that I can monitor.

I have had three of 5 radiation sessions to my eye, and it is improving, I am now able to open it quite well but it is not properly aligned yet and still gives me double vision if I try to look out both eyes at once, so the eye covering stays for now. I imagine the trial meds are helping it too.

I have all my review visits and test dates mapped out for the next 8 weeks so at least I can now plan my life a bit and work out when I can get back home for some time.

Best wishes to everyone fighting this beast!
Ally

Hi everyone,
I thought I would come back into this thread and keep it updated so I can report on the progress of this trial.

So 1 week in, and I am having no trouble at all with the meds ( apart from having to swallow 8 pills in the morning and 3 at night, I rattle!). I know the main side effects to look out for but none has arisen as yet.

It may be wishful thinking but I do believe the small sub-q bump that popped up on my thigh a couple of weeks back has reduced a little in size. I have no other external tumours that I can monitor.

I have had three of 5 radiation sessions to my eye, and it is improving, I am now able to open it quite well but it is not properly aligned yet and still gives me double vision if I try to look out both eyes at once, so the eye covering stays for now. I imagine the trial meds are helping it too.

I have all my review visits and test dates mapped out for the next 8 weeks so at least I can now plan my life a bit and work out when I can get back home for some time.

Best wishes to everyone fighting this beast!
Ally

Hi everyone, reporting in again. So today I completed the first 28 day cycle on this combo trial, and things are looking Ok. All my mets are stable with no new ones appearing. They are mainly in the para-aortic and pelvic region, with some sub-q mets in my backside.. My doc says this is a good result for only 28 days in the drugs.

The scan today did not make any mention of the previous met behind the left eye which was the source of so much trouble 4-5 weeks back. My own amateur viewing of the films leads me to think there is a tiny spot still there but maybe it is just scar tissue. Certainly the radiographer didn’t think there was anything of significance worth mentioning, and my doc said my eye is certainly improving, which I know, even though it is not back to normal position or normal binocular vision as yet, that may take a few more weeks.

All in all, the drugs have been easy, I had two bouts of gastro during the month but they lasted under 24 hrs each and were highly likely just food poisoning or a bug, not the drugs.

Best thing is I am now heading home to my family for a couple of weeks before another check up visit, which will be wonderful. At the end of the next cycle I should move onto monthly visits only.
Cheers
Ally

Hi everyone, reporting in again. So today I completed the first 28 day cycle on this combo trial, and things are looking Ok. All my mets are stable with no new ones appearing. They are mainly in the para-aortic and pelvic region, with some sub-q mets in my backside.. My doc says this is a good result for only 28 days in the drugs.

The scan today did not make any mention of the previous met behind the left eye which was the source of so much trouble 4-5 weeks back. My own amateur viewing of the films leads me to think there is a tiny spot still there but maybe it is just scar tissue. Certainly the radiographer didn’t think there was anything of significance worth mentioning, and my doc said my eye is certainly improving, which I know, even though it is not back to normal position or normal binocular vision as yet, that may take a few more weeks.

All in all, the drugs have been easy, I had two bouts of gastro during the month but they lasted under 24 hrs each and were highly likely just food poisoning or a bug, not the drugs.

Best thing is I am now heading home to my family for a couple of weeks before another check up visit, which will be wonderful. At the end of the next cycle I should move onto monthly visits only.
Cheers
Ally

Hi everyone, reporting in again. So today I completed the first 28 day cycle on this combo trial, and things are looking Ok. All my mets are stable with no new ones appearing. They are mainly in the para-aortic and pelvic region, with some sub-q mets in my backside.. My doc says this is a good result for only 28 days in the drugs.

The scan today did not make any mention of the previous met behind the left eye which was the source of so much trouble 4-5 weeks back. My own amateur viewing of the films leads me to think there is a tiny spot still there but maybe it is just scar tissue. Certainly the radiographer didn’t think there was anything of significance worth mentioning, and my doc said my eye is certainly improving, which I know, even though it is not back to normal position or normal binocular vision as yet, that may take a few more weeks.

All in all, the drugs have been easy, I had two bouts of gastro during the month but they lasted under 24 hrs each and were highly likely just food poisoning or a bug, not the drugs.

Best thing is I am now heading home to my family for a couple of weeks before another check up visit, which will be wonderful. At the end of the next cycle I should move onto monthly visits only.
Cheers
Ally

May 6, 2013 – Today was day 56 of the combination trial, I had a CT scan which again shows stable disease, one target lymph node near the pancreas has shrunk a few millimetres, yay, another node may have increased a little but it is still only lymph nodes, no major organ or brain involvement.

I feel really well, I just need to get onto doing some more exercise to regain some fitness. My left eye is still not quite right but it is nearly there, it is settling back into place and looked much more normal on the CT scan than a month ago.

As I am in a dose-escalation study, if I am still going well in another 56 days, I may get an increased dose of the drugs which may be more beneficial. Fingers crossed!
Ally

May 6, 2013 – Today was day 56 of the combination trial, I had a CT scan which again shows stable disease, one target lymph node near the pancreas has shrunk a few millimetres, yay, another node may have increased a little but it is still only lymph nodes, no major organ or brain involvement.

I feel really well, I just need to get onto doing some more exercise to regain some fitness. My left eye is still not quite right but it is nearly there, it is settling back into place and looked much more normal on the CT scan than a month ago.

As I am in a dose-escalation study, if I am still going well in another 56 days, I may get an increased dose of the drugs which may be more beneficial. Fingers crossed!
Ally

May 6, 2013 – Today was day 56 of the combination trial, I had a CT scan which again shows stable disease, one target lymph node near the pancreas has shrunk a few millimetres, yay, another node may have increased a little but it is still only lymph nodes, no major organ or brain involvement.

I feel really well, I just need to get onto doing some more exercise to regain some fitness. My left eye is still not quite right but it is nearly there, it is settling back into place and looked much more normal on the CT scan than a month ago.

As I am in a dose-escalation study, if I am still going well in another 56 days, I may get an increased dose of the drugs which may be more beneficial. Fingers crossed!
Ally

Hi everyone, a bit of an update from the end of my third cycle. I only had blood tests and a quick chat with one of the registrars in the melanoma team, so I didn’t learn a lot other than that my bloodwork was OK. I have been feeling a little off colour for a couple of weeks, just some vague headachy feelings (which have now gone), and some grumbly tummy feelings (which are persisting somewhat), so I’m not sure whether its just some random bug, I hope so. I do suspect that the lack of a gallbladder is causing some of the tummy troubles. Scan at the start of July will be the next real information. But overall I am well considering where I was at in late February!

Hi everyone, a bit of an update from the end of my third cycle. I only had blood tests and a quick chat with one of the registrars in the melanoma team, so I didn’t learn a lot other than that my bloodwork was OK. I have been feeling a little off colour for a couple of weeks, just some vague headachy feelings (which have now gone), and some grumbly tummy feelings (which are persisting somewhat), so I’m not sure whether its just some random bug, I hope so. I do suspect that the lack of a gallbladder is causing some of the tummy troubles. Scan at the start of July will be the next real information. But overall I am well considering where I was at in late February!

Hi everyone, a bit of an update from the end of my third cycle. I only had blood tests and a quick chat with one of the registrars in the melanoma team, so I didn’t learn a lot other than that my bloodwork was OK. I have been feeling a little off colour for a couple of weeks, just some vague headachy feelings (which have now gone), and some grumbly tummy feelings (which are persisting somewhat), so I’m not sure whether its just some random bug, I hope so. I do suspect that the lack of a gallbladder is causing some of the tummy troubles. Scan at the start of July will be the next real information. But overall I am well considering where I was at in late February!

Meldad, sorry to hear this has happened to your father.

That length of wash-out period sounds long, I was only 48 hours between stopping Dabrafenib (GSK’s version of Zelboraf) and starting on this trial. I would have thought that Novartis would have the same protocol for any previous BRAF inhibitors. Which hospital/doctors is your dad under?

Meldad, sorry to hear this has happened to your father.

That length of wash-out period sounds long, I was only 48 hours between stopping Dabrafenib (GSK’s version of Zelboraf) and starting on this trial. I would have thought that Novartis would have the same protocol for any previous BRAF inhibitors. Which hospital/doctors is your dad under?

Meldad, sorry to hear this has happened to your father.

That length of wash-out period sounds long, I was only 48 hours between stopping Dabrafenib (GSK’s version of Zelboraf) and starting on this trial. I would have thought that Novartis would have the same protocol for any previous BRAF inhibitors. Which hospital/doctors is your dad under?

Thanks for your thoughts, my double vision is persisting but my left eye is very very slowly moving back towards normal position, I think the poor little delicate muscles around the eye were just so stretched they are taking ages to recover. I am learning to live with it though, it could be worse.

At least after the ASCO news I have the hope offered by the Ipi/Novi combination, it is a great development.

I date my recent tummy upsets back to a day when I ate some cold cooked chicken that may not have been completely properly refrigerated, because I don't remember anything like these issues before that, and I had the gallbladder removed in mid-February with no real noticeable effects between then and now apart from the occassional build up of gas after heavier meals that responded well to peppermint tea. So maybe I gave myself a nasty bout of food poisoning that has had some lasting effects! I am starting to feel a bit better.

Will post again after my July scans

Thanks for your thoughts, my double vision is persisting but my left eye is very very slowly moving back towards normal position, I think the poor little delicate muscles around the eye were just so stretched they are taking ages to recover. I am learning to live with it though, it could be worse.

At least after the ASCO news I have the hope offered by the Ipi/Novi combination, it is a great development.

I date my recent tummy upsets back to a day when I ate some cold cooked chicken that may not have been completely properly refrigerated, because I don't remember anything like these issues before that, and I had the gallbladder removed in mid-February with no real noticeable effects between then and now apart from the occassional build up of gas after heavier meals that responded well to peppermint tea. So maybe I gave myself a nasty bout of food poisoning that has had some lasting effects! I am starting to feel a bit better.

Will post again after my July scans

Thanks for your thoughts, my double vision is persisting but my left eye is very very slowly moving back towards normal position, I think the poor little delicate muscles around the eye were just so stretched they are taking ages to recover. I am learning to live with it though, it could be worse.

At least after the ASCO news I have the hope offered by the Ipi/Novi combination, it is a great development.

I date my recent tummy upsets back to a day when I ate some cold cooked chicken that may not have been completely properly refrigerated, because I don't remember anything like these issues before that, and I had the gallbladder removed in mid-February with no real noticeable effects between then and now apart from the occassional build up of gas after heavier meals that responded well to peppermint tea. So maybe I gave myself a nasty bout of food poisoning that has had some lasting effects! I am starting to feel a bit better.

Will post again after my July scans