› Forums › General Melanoma Community › Scans frequency while on Trametinib-Dabrafenib combo
- This topic has 9 replies, 3 voices, and was last updated 9 years, 11 months ago by
fortiz.
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- October 6, 2015 at 12:44 am
Hello everyone,
my father (age 69) is currently been treated in Milan, Italy for metastatic melanoma with brain metastasis. He has been on trial NCT02039947 ("Study to Evaluate Treatment of Dabrafenib Plus Trametinib in Subjects With BRAF Mutation-Positive Melanoma That Has Metastasized to the Brain") since January. Back then he had 3 brain mets, and many (non-countable in scans) and growing in lungs, kidneys and bowel. He had a great response: all metastasis gone from bowel, only one brain met left but now point-like, and only two small ones in the lungs (but stable since March). We are very HAPPY about the results also because he has no side effects, and is able to have a very good quality of life, including going to the gym and lap swimming 3 times a week.
Starting on month 10, the trial wants him to have scans (full body cat scan and brain MRI) monthly instead of every two months, as he has done so far. I guess it's because around this time many people on BRAF-MEK inhibitors see mets growing again since tumor develops resistance. We clearly want to stay in the trial as long as there is response, but I was wondering whether having a full body CAT scan and a brain MRI every single month is an overkill.
Does anybody who has been on BRAF/MEK inhibitors have any experience on that? What was your scan frequency around and after month 10?
Thanks everyone in advance, and let me express my gratitude for your contributions to this forum: it is a constant source of inspiration for all of us who are living through this experience.
Guido
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- October 6, 2015 at 4:24 am
If you are on a trial, you have to follow their protocol or you will be dropped. The protocol has increased frequency for a reason. Otherwise, I'm sure if you were to take the drugs outside a trial (not sure the status of doing that in Italy) – typical scan frequency (at least in the US) is more likely to be every three months.
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- October 6, 2015 at 4:24 am
If you are on a trial, you have to follow their protocol or you will be dropped. The protocol has increased frequency for a reason. Otherwise, I'm sure if you were to take the drugs outside a trial (not sure the status of doing that in Italy) – typical scan frequency (at least in the US) is more likely to be every three months.
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- October 6, 2015 at 4:24 am
If you are on a trial, you have to follow their protocol or you will be dropped. The protocol has increased frequency for a reason. Otherwise, I'm sure if you were to take the drugs outside a trial (not sure the status of doing that in Italy) – typical scan frequency (at least in the US) is more likely to be every three months.
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- October 6, 2015 at 5:25 am
Hi Guido,
It's great your Dad found a clinical trial specifically for patients with brain mets. They are not that common in my experience, and maybe not that easy to get into.
I'd definitely have a greater concern about brain mets than scan frequency. When I was being attacked by brain mets I'd have been more than happy to get monthly MRIs. In one tricky period I actually did get 3 in the space of about 3 months. The earlier they're caught, the earlier something can be done about them before they get bigger. And there's no real health impact from MRIs as far as I know.
I do currently get CT scans every 2 months for a (non-brain-met) clinical trial. I'd like not to have to get them at all because of the radiation. But the tradeoff for me is so much greater in favor of participating in the clinical trial.
I'd never thought about what the scan frequency might be for brain met trials in general. The kind of frequency in your Dad's trial does seem sense, in the way you explain it.
Good thoughts for continued success.
– Kyle -
- October 6, 2015 at 5:25 am
Hi Guido,
It's great your Dad found a clinical trial specifically for patients with brain mets. They are not that common in my experience, and maybe not that easy to get into.
I'd definitely have a greater concern about brain mets than scan frequency. When I was being attacked by brain mets I'd have been more than happy to get monthly MRIs. In one tricky period I actually did get 3 in the space of about 3 months. The earlier they're caught, the earlier something can be done about them before they get bigger. And there's no real health impact from MRIs as far as I know.
I do currently get CT scans every 2 months for a (non-brain-met) clinical trial. I'd like not to have to get them at all because of the radiation. But the tradeoff for me is so much greater in favor of participating in the clinical trial.
I'd never thought about what the scan frequency might be for brain met trials in general. The kind of frequency in your Dad's trial does seem sense, in the way you explain it.
Good thoughts for continued success.
– Kyle -
- October 6, 2015 at 5:25 am
Hi Guido,
It's great your Dad found a clinical trial specifically for patients with brain mets. They are not that common in my experience, and maybe not that easy to get into.
I'd definitely have a greater concern about brain mets than scan frequency. When I was being attacked by brain mets I'd have been more than happy to get monthly MRIs. In one tricky period I actually did get 3 in the space of about 3 months. The earlier they're caught, the earlier something can be done about them before they get bigger. And there's no real health impact from MRIs as far as I know.
I do currently get CT scans every 2 months for a (non-brain-met) clinical trial. I'd like not to have to get them at all because of the radiation. But the tradeoff for me is so much greater in favor of participating in the clinical trial.
I'd never thought about what the scan frequency might be for brain met trials in general. The kind of frequency in your Dad's trial does seem sense, in the way you explain it.
Good thoughts for continued success.
– Kyle -
- October 6, 2015 at 2:33 pm
Hello Guido,My wife is on a BRAF+MEK trial at Spain (Vemurafenib plus cobimetinib). She has done scans every 2 months for 2 years and a half. And the last revision it has changed to every 3 months.She started the trial with 3 metastasis (2 nodes at the groin and 1 met at the elbow bone) and now she is NED. The primary was at the foot.We asked the doctor several times about the scans interval, but we couldn’t do anything. They have decided when to change, not us. Anyway we are very grateful about the drug response and she continues at full dosage. -
- October 6, 2015 at 2:33 pm
Hello Guido,My wife is on a BRAF+MEK trial at Spain (Vemurafenib plus cobimetinib). She has done scans every 2 months for 2 years and a half. And the last revision it has changed to every 3 months.She started the trial with 3 metastasis (2 nodes at the groin and 1 met at the elbow bone) and now she is NED. The primary was at the foot.We asked the doctor several times about the scans interval, but we couldn’t do anything. They have decided when to change, not us. Anyway we are very grateful about the drug response and she continues at full dosage. -
- October 6, 2015 at 2:33 pm
Hello Guido,My wife is on a BRAF+MEK trial at Spain (Vemurafenib plus cobimetinib). She has done scans every 2 months for 2 years and a half. And the last revision it has changed to every 3 months.She started the trial with 3 metastasis (2 nodes at the groin and 1 met at the elbow bone) and now she is NED. The primary was at the foot.We asked the doctor several times about the scans interval, but we couldn’t do anything. They have decided when to change, not us. Anyway we are very grateful about the drug response and she continues at full dosage.
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