› Forums › General Melanoma Community › Another Good Scan
- This topic has 21 replies, 6 voices, and was last updated 13 years, 5 months ago by
TSchulz.
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- June 30, 2012 at 3:06 am
Hi All
I dont post much, but visit all the time. My husband Craig, who is on the GSK B-BRAF inhibitor trial, just had his 12 weekly scans and he continues to respond well. In fact, the report this time said 'complete remission' – which I guess we all know probably isnt technically possible, but still nice to have nothing show up. Our clinical trial nurse said he has been one of only two on this trial who have had this complete repsonse. I had a bad feeling about this scan, so it was great to get this news. This now puts him at 72 weeks on the trial.
Hi All
I dont post much, but visit all the time. My husband Craig, who is on the GSK B-BRAF inhibitor trial, just had his 12 weekly scans and he continues to respond well. In fact, the report this time said 'complete remission' – which I guess we all know probably isnt technically possible, but still nice to have nothing show up. Our clinical trial nurse said he has been one of only two on this trial who have had this complete repsonse. I had a bad feeling about this scan, so it was great to get this news. This now puts him at 72 weeks on the trial.
We feel so blessed to have had such great long term results – hopefully others out there can have the same success.+
All the best
Lisa – Aust
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- June 30, 2012 at 3:22 am
Very happy for you Lisa, may you and Craig enjoy the weeks, months, and years to come!
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- June 30, 2012 at 1:08 pm
Wow Lisa and Craig, that is wonderful news and really inspiring. I am on the GSK BRAF inhibitor (compassionate access, not the trial so I am not getting the MEK inhibitor with it), I am due my first 12 weekly scans on 20 July, so hoping we will see some response.Do the doctors have any idea why Craig is such a good long term responder, eg is there something about his particular mutations?
Best wishes for continued “remission”
Ally -
- June 30, 2012 at 1:08 pm
Wow Lisa and Craig, that is wonderful news and really inspiring. I am on the GSK BRAF inhibitor (compassionate access, not the trial so I am not getting the MEK inhibitor with it), I am due my first 12 weekly scans on 20 July, so hoping we will see some response.Do the doctors have any idea why Craig is such a good long term responder, eg is there something about his particular mutations?
Best wishes for continued “remission”
Ally -
- June 30, 2012 at 1:08 pm
Wow Lisa and Craig, that is wonderful news and really inspiring. I am on the GSK BRAF inhibitor (compassionate access, not the trial so I am not getting the MEK inhibitor with it), I am due my first 12 weekly scans on 20 July, so hoping we will see some response.Do the doctors have any idea why Craig is such a good long term responder, eg is there something about his particular mutations?
Best wishes for continued “remission”
Ally-
- June 30, 2012 at 1:43 pm
Thanks guys for the support – Nahmi, sorry to read your earlier post about your dad – this disease sucks.
Ally – Craig isnt getting the MEK either, this is a phase 3 trial of just the BRAF. So it must be the same drug id say. How are you feeling? Are you having many side effects? Craig did have some at the start like joint pain and sensitive feet, but they settled after a month or so. We know people who are on the Roche trial and they had much more severe side effects like really bad rash etc. Craigs side effects were definitely tolerable.
In regard to his good response – we are unsure. He didnt have much disease to start with when he progressed to stage 4. Just a met in his rib, and something questionable in his abdomen. So perhaps this initial low disease burden is a factor? Also, he had that rib met for around a year (dr thought it was an old sporting injury) so I guess that tells us that his type doesnt seem to be aggressive. When he was tested for the BRAF mutation, they did actually find another mutation that the onc had never seen before. It was still on the braf line or whatever, but had a different number – so who knows, maybe that has something to do with it?
Whatever it is – i hope it keeps working 🙂
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- June 30, 2012 at 1:43 pm
Thanks guys for the support – Nahmi, sorry to read your earlier post about your dad – this disease sucks.
Ally – Craig isnt getting the MEK either, this is a phase 3 trial of just the BRAF. So it must be the same drug id say. How are you feeling? Are you having many side effects? Craig did have some at the start like joint pain and sensitive feet, but they settled after a month or so. We know people who are on the Roche trial and they had much more severe side effects like really bad rash etc. Craigs side effects were definitely tolerable.
In regard to his good response – we are unsure. He didnt have much disease to start with when he progressed to stage 4. Just a met in his rib, and something questionable in his abdomen. So perhaps this initial low disease burden is a factor? Also, he had that rib met for around a year (dr thought it was an old sporting injury) so I guess that tells us that his type doesnt seem to be aggressive. When he was tested for the BRAF mutation, they did actually find another mutation that the onc had never seen before. It was still on the braf line or whatever, but had a different number – so who knows, maybe that has something to do with it?
Whatever it is – i hope it keeps working 🙂
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- June 30, 2012 at 1:43 pm
Thanks guys for the support – Nahmi, sorry to read your earlier post about your dad – this disease sucks.
Ally – Craig isnt getting the MEK either, this is a phase 3 trial of just the BRAF. So it must be the same drug id say. How are you feeling? Are you having many side effects? Craig did have some at the start like joint pain and sensitive feet, but they settled after a month or so. We know people who are on the Roche trial and they had much more severe side effects like really bad rash etc. Craigs side effects were definitely tolerable.
In regard to his good response – we are unsure. He didnt have much disease to start with when he progressed to stage 4. Just a met in his rib, and something questionable in his abdomen. So perhaps this initial low disease burden is a factor? Also, he had that rib met for around a year (dr thought it was an old sporting injury) so I guess that tells us that his type doesnt seem to be aggressive. When he was tested for the BRAF mutation, they did actually find another mutation that the onc had never seen before. It was still on the braf line or whatever, but had a different number – so who knows, maybe that has something to do with it?
Whatever it is – i hope it keeps working 🙂
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- June 30, 2012 at 2:19 pm
Very happy for up Lisa. Ally – can I ask, how did you get access to the GSK BRAF? I was denied for the trial as well as two others, and having response with Zelboraf but the side effects are just awful and although some seem to recede, others just keep coming. Also stuck on 5 mg Prednisone for the rash control which I hate, it brings it’s own problems. Why didn’t your onc try Zelboraf?Thanks!
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- June 30, 2012 at 2:19 pm
Very happy for up Lisa. Ally – can I ask, how did you get access to the GSK BRAF? I was denied for the trial as well as two others, and having response with Zelboraf but the side effects are just awful and although some seem to recede, others just keep coming. Also stuck on 5 mg Prednisone for the rash control which I hate, it brings it’s own problems. Why didn’t your onc try Zelboraf?Thanks!
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- June 30, 2012 at 2:19 pm
Very happy for up Lisa. Ally – can I ask, how did you get access to the GSK BRAF? I was denied for the trial as well as two others, and having response with Zelboraf but the side effects are just awful and although some seem to recede, others just keep coming. Also stuck on 5 mg Prednisone for the rash control which I hate, it brings it’s own problems. Why didn’t your onc try Zelboraf?Thanks!
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- July 1, 2012 at 12:47 pm
Hi Lisa, that is interesting that Craig is just on the BRAF too. I am feeling really good, just before I started I had quite bad pneumonitis, which excluded me from the combo trial, the lung specialist thought it wouldn’t be anything to do with mel but it turned out it was – thankfully though the infiltration of the lungs had not resulted in more than 1 very small nodule, and steroids got me feeling better until the Dabrafenib kicked in. My only other evidence of disease is some enlarged lymph nodes and scattered cutaneous mel spots, that seems like a relatively low disease burden compared with many Stage IV people on here. The only side effects I am having are warty skin growths and scaly, slightly sore feet. Fingers crossed I get a response even half as good as Craigs.AWillett, I was being assessed for the GSK BRAF/MEK phase 3 combo trial at Westmead Hospital in Sydney, Aust. As I said, I was excluded from the trial, but my docs applied to GSK for compassionate access which was granted. At the time, Zelboraf had not been approved for general use in Australia outside of trials, it since has been, about 2 weeks ago, but I am glad I am on Dabrafenib, it seems to be much better in terms of side effects.
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- July 1, 2012 at 12:47 pm
Hi Lisa, that is interesting that Craig is just on the BRAF too. I am feeling really good, just before I started I had quite bad pneumonitis, which excluded me from the combo trial, the lung specialist thought it wouldn’t be anything to do with mel but it turned out it was – thankfully though the infiltration of the lungs had not resulted in more than 1 very small nodule, and steroids got me feeling better until the Dabrafenib kicked in. My only other evidence of disease is some enlarged lymph nodes and scattered cutaneous mel spots, that seems like a relatively low disease burden compared with many Stage IV people on here. The only side effects I am having are warty skin growths and scaly, slightly sore feet. Fingers crossed I get a response even half as good as Craigs.AWillett, I was being assessed for the GSK BRAF/MEK phase 3 combo trial at Westmead Hospital in Sydney, Aust. As I said, I was excluded from the trial, but my docs applied to GSK for compassionate access which was granted. At the time, Zelboraf had not been approved for general use in Australia outside of trials, it since has been, about 2 weeks ago, but I am glad I am on Dabrafenib, it seems to be much better in terms of side effects.
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- July 1, 2012 at 12:47 pm
Hi Lisa, that is interesting that Craig is just on the BRAF too. I am feeling really good, just before I started I had quite bad pneumonitis, which excluded me from the combo trial, the lung specialist thought it wouldn’t be anything to do with mel but it turned out it was – thankfully though the infiltration of the lungs had not resulted in more than 1 very small nodule, and steroids got me feeling better until the Dabrafenib kicked in. My only other evidence of disease is some enlarged lymph nodes and scattered cutaneous mel spots, that seems like a relatively low disease burden compared with many Stage IV people on here. The only side effects I am having are warty skin growths and scaly, slightly sore feet. Fingers crossed I get a response even half as good as Craigs.AWillett, I was being assessed for the GSK BRAF/MEK phase 3 combo trial at Westmead Hospital in Sydney, Aust. As I said, I was excluded from the trial, but my docs applied to GSK for compassionate access which was granted. At the time, Zelboraf had not been approved for general use in Australia outside of trials, it since has been, about 2 weeks ago, but I am glad I am on Dabrafenib, it seems to be much better in terms of side effects.
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