› Forums › General Melanoma Community › For braf neg patients
- This topic has 45 replies, 5 voices, and was last updated 10 years ago by
Kate_perth.
- Post
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- April 14, 2014 at 10:10 pm
Just wanted to share this:-
When I was first diagnosed in 2012, I tested braf negative. It seems to be generally acknowledged that if you are braf negative, you always will be so you're not usually tested again. However, in 2013 I had a small metastases to my left breast and went to a breast specialist at a different hospital for surgery. As this was my first tumour with her (and very luckily for me), she tested me again for braf and the test came back braf positive. I am now responding very well to the braf/mek combo!
After speaking to a few research nurses, they have said that this seems to have happened to a number of their patients, though no one seems to know whether the tests are a little unreliable or the melanoma can mutate into braf positive with time.
My advice is ask to be tested regularly for braf… I can't even believe how lucky I was… If it wasn't for that small bit of luck, I would very likely not be alive – and now I have my best prognosis since diagnosis!
Take control, look after yourself and never ever give up hope!
- Replies
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- April 14, 2014 at 10:18 pm
This is so helpful, Kate. My dad recently tested negative and it's good to know we might have other treatment options in the future. I'm currently searching for an open PD1/Yervoy combination trial for him.
Best wishes to you for continued success!
Laura
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- April 15, 2014 at 12:31 pm
Hi Laura,
im glad you're looking at the PD-1 / yervoy trial… I went on the phase two trial that has now closed here in august with unfortunate results (I was randomised to the PD-1) but the other 8 people I know who were on PD-1 in my trial have all had fantastic results so it certainly seems to be a very effective drug.. They're all still on it as of last month and many have shown amazing improvement!
good luck and hope you find a trial near you soon!
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- April 15, 2014 at 12:31 pm
Hi Laura,
im glad you're looking at the PD-1 / yervoy trial… I went on the phase two trial that has now closed here in august with unfortunate results (I was randomised to the PD-1) but the other 8 people I know who were on PD-1 in my trial have all had fantastic results so it certainly seems to be a very effective drug.. They're all still on it as of last month and many have shown amazing improvement!
good luck and hope you find a trial near you soon!
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- April 15, 2014 at 12:31 pm
Hi Laura,
im glad you're looking at the PD-1 / yervoy trial… I went on the phase two trial that has now closed here in august with unfortunate results (I was randomised to the PD-1) but the other 8 people I know who were on PD-1 in my trial have all had fantastic results so it certainly seems to be a very effective drug.. They're all still on it as of last month and many have shown amazing improvement!
good luck and hope you find a trial near you soon!
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- April 16, 2014 at 1:03 pm
Hey Laura,
Hope your dad is doing ok… Melanoma research is pretty exciting at the moment… I think the majority of us stage-4-ers are just holding into the hope that our current treatments will keep us going until the next advancement comes along… It's certainly how I feel anyway!
I feel amazingly lucky really because I don't really feel any different physically than I ever have (dabrafenib fevers excluded… Yuck)
thanks for your best wishes… Here's to living… Even with stage four melanoma!
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- April 16, 2014 at 1:03 pm
Hey Laura,
Hope your dad is doing ok… Melanoma research is pretty exciting at the moment… I think the majority of us stage-4-ers are just holding into the hope that our current treatments will keep us going until the next advancement comes along… It's certainly how I feel anyway!
I feel amazingly lucky really because I don't really feel any different physically than I ever have (dabrafenib fevers excluded… Yuck)
thanks for your best wishes… Here's to living… Even with stage four melanoma!
-
- April 16, 2014 at 1:03 pm
Hey Laura,
Hope your dad is doing ok… Melanoma research is pretty exciting at the moment… I think the majority of us stage-4-ers are just holding into the hope that our current treatments will keep us going until the next advancement comes along… It's certainly how I feel anyway!
I feel amazingly lucky really because I don't really feel any different physically than I ever have (dabrafenib fevers excluded… Yuck)
thanks for your best wishes… Here's to living… Even with stage four melanoma!
-
- April 14, 2014 at 10:18 pm
This is so helpful, Kate. My dad recently tested negative and it's good to know we might have other treatment options in the future. I'm currently searching for an open PD1/Yervoy combination trial for him.
Best wishes to you for continued success!
Laura
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- April 14, 2014 at 10:18 pm
This is so helpful, Kate. My dad recently tested negative and it's good to know we might have other treatment options in the future. I'm currently searching for an open PD1/Yervoy combination trial for him.
Best wishes to you for continued success!
Laura
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- April 15, 2014 at 10:58 am
Hey Kate,
We are also in Perth – my hubby the patient. Are you at Charlies?
Lisa
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- April 15, 2014 at 12:23 pm
Hi Lisa,
I've had the majority of my treatment and follow up at Charlie's but have also seen a specialist at royal perth and privately over the years.
Hows your hubby doing?
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- April 15, 2014 at 12:23 pm
Hi Lisa,
I've had the majority of my treatment and follow up at Charlie's but have also seen a specialist at royal perth and privately over the years.
Hows your hubby doing?
-
- April 15, 2014 at 12:34 pm
Also, have you made contact with the melanoma nurses there? They have made everything soooooo much easier for me, from booking appointments, to side effect advice and also some benefits the cancer council can give you… Definitely a resource to utilise! And they're lovely too!
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- April 15, 2014 at 12:34 pm
Also, have you made contact with the melanoma nurses there? They have made everything soooooo much easier for me, from booking appointments, to side effect advice and also some benefits the cancer council can give you… Definitely a resource to utilise! And they're lovely too!
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- April 15, 2014 at 1:20 pm
Hi, Unfortunately it seems like we are part of the furniture down at Charlies – we have been hanging out down there with Prof Millward for around 7 years! The nurses there are all so lovely and supportive – very lucky.
Husband (Craig) was diagnosed back in 07 – stage 3. Neck dissection, interferon and radiation did the job for around 3 years, until he progressed to stage 4 in Dec 2010. Jumped onto the GSK Braf inhibitor trial and went 2.5 years on that (complete response). Then progressed again in Aug 2013, Jumped on the Merck PD-1 trial and again has had pretty much a complete response. He has only ever had 2 small spots, and both drugs have managed to keep them in check.
So to say he has been lucky is an understatement!
I dont like to put it all down to luck tho – he is very strong and healthy and conscious about leading a healthy lifestyle. We were more full on with this complementary stuff in the beginning (gave me something to do), and have now found a nice balance. He is currently studying, working and training for an Ironman!
Who do you see at Charlies? And how are you going?
Have you had anything to do with MelanomaWA at all? Craig has become quite good mates with Clint who runs it – they are doing the Busso Ironman together at the end of the year!
Nice to see another Perth person on the board – I bet some of the guys in the US must wonder where on earth Perth is!
Lisa
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- April 15, 2014 at 1:20 pm
Hi, Unfortunately it seems like we are part of the furniture down at Charlies – we have been hanging out down there with Prof Millward for around 7 years! The nurses there are all so lovely and supportive – very lucky.
Husband (Craig) was diagnosed back in 07 – stage 3. Neck dissection, interferon and radiation did the job for around 3 years, until he progressed to stage 4 in Dec 2010. Jumped onto the GSK Braf inhibitor trial and went 2.5 years on that (complete response). Then progressed again in Aug 2013, Jumped on the Merck PD-1 trial and again has had pretty much a complete response. He has only ever had 2 small spots, and both drugs have managed to keep them in check.
So to say he has been lucky is an understatement!
I dont like to put it all down to luck tho – he is very strong and healthy and conscious about leading a healthy lifestyle. We were more full on with this complementary stuff in the beginning (gave me something to do), and have now found a nice balance. He is currently studying, working and training for an Ironman!
Who do you see at Charlies? And how are you going?
Have you had anything to do with MelanomaWA at all? Craig has become quite good mates with Clint who runs it – they are doing the Busso Ironman together at the end of the year!
Nice to see another Perth person on the board – I bet some of the guys in the US must wonder where on earth Perth is!
Lisa
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- April 15, 2014 at 8:52 pm
Some of us in the U.S.A. know where Perth is, since we have been there! I was in Oz for a month whirlwind visit (not long enough) and basically was just on the edges. Didn't see the middle, or the top or Sydney area. Thrilled to see a cassowary. Also several kinds of kangaroos. Even then I knew about the hazards of sun in that country, presumably because of the ozone hole.
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- April 17, 2014 at 3:53 am
Hello Anonymous!
Wonderful to hear you have been to sunny Perth!
We seem to miss out on lots – alot of the big concerts/acts that come seem to bypass us for the East Coast!
We were very happy to be recently featured in the NY Times as an up and coming city!
Did you go over to Rottnest Island and see a Quokka? They are pretty cool.
Hope you come back one day to visit!
Lisa
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- April 17, 2014 at 3:53 am
Hello Anonymous!
Wonderful to hear you have been to sunny Perth!
We seem to miss out on lots – alot of the big concerts/acts that come seem to bypass us for the East Coast!
We were very happy to be recently featured in the NY Times as an up and coming city!
Did you go over to Rottnest Island and see a Quokka? They are pretty cool.
Hope you come back one day to visit!
Lisa
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- April 17, 2014 at 3:53 am
Hello Anonymous!
Wonderful to hear you have been to sunny Perth!
We seem to miss out on lots – alot of the big concerts/acts that come seem to bypass us for the East Coast!
We were very happy to be recently featured in the NY Times as an up and coming city!
Did you go over to Rottnest Island and see a Quokka? They are pretty cool.
Hope you come back one day to visit!
Lisa
-
- April 15, 2014 at 8:52 pm
Some of us in the U.S.A. know where Perth is, since we have been there! I was in Oz for a month whirlwind visit (not long enough) and basically was just on the edges. Didn't see the middle, or the top or Sydney area. Thrilled to see a cassowary. Also several kinds of kangaroos. Even then I knew about the hazards of sun in that country, presumably because of the ozone hole.
-
- April 15, 2014 at 8:52 pm
Some of us in the U.S.A. know where Perth is, since we have been there! I was in Oz for a month whirlwind visit (not long enough) and basically was just on the edges. Didn't see the middle, or the top or Sydney area. Thrilled to see a cassowary. Also several kinds of kangaroos. Even then I knew about the hazards of sun in that country, presumably because of the ozone hole.
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- April 16, 2014 at 12:49 pm
Hi Lisa,
heres me preaching to the choir!?!
I see prof milward as well.. And occasionally dr feeney. Both have been amazing really.
to be honest, aside from the drug side effects, I have felt completely normal the whole time which can make it feel somewhat unreal (though that only lasts until I go in for a scan… Scanxiety is the worst!) I have metastases to bone, liver, lung and distal lymph nodes. My liver metastases went crazy while on the PD-1 trial and I got taken off but everyone else has apparently had great results, which makes it a pretty promising drug… Currently hoping braf/mek (and possibly yervoy which I haven't tried yet and will be my next step when braf/mek becomes ineffective) can hold everything in check until the med science people come up with the next amazing advance!
in general, I'm a fan of juicing vegetables, staying positive and exercising/eating well (chocolate and occasional alcohol binge excepted… You need to live, right?!?) The steroids to stop the dabrafenib fevers make me hungry a lot though and can make it a bit hard to control weight but I'm getting there.
I haven't been to any of the melanomawa events as yet but keep meaning to go… When I was first diagnosed and in the depths of "I'm going to die" depression, my mum put me onto Clint's story and Ross's book "living simply with cancer" and they both changed my outlook on having melanoma in a really positive way… Both have been an amazing inspiration really!
Ive been a little sneaky and using this board for inspiration and advice for over a year… But never posted before….
Maybe we'll run into each other somewhere someday!
-
- April 16, 2014 at 12:49 pm
Hi Lisa,
heres me preaching to the choir!?!
I see prof milward as well.. And occasionally dr feeney. Both have been amazing really.
to be honest, aside from the drug side effects, I have felt completely normal the whole time which can make it feel somewhat unreal (though that only lasts until I go in for a scan… Scanxiety is the worst!) I have metastases to bone, liver, lung and distal lymph nodes. My liver metastases went crazy while on the PD-1 trial and I got taken off but everyone else has apparently had great results, which makes it a pretty promising drug… Currently hoping braf/mek (and possibly yervoy which I haven't tried yet and will be my next step when braf/mek becomes ineffective) can hold everything in check until the med science people come up with the next amazing advance!
in general, I'm a fan of juicing vegetables, staying positive and exercising/eating well (chocolate and occasional alcohol binge excepted… You need to live, right?!?) The steroids to stop the dabrafenib fevers make me hungry a lot though and can make it a bit hard to control weight but I'm getting there.
I haven't been to any of the melanomawa events as yet but keep meaning to go… When I was first diagnosed and in the depths of "I'm going to die" depression, my mum put me onto Clint's story and Ross's book "living simply with cancer" and they both changed my outlook on having melanoma in a really positive way… Both have been an amazing inspiration really!
Ive been a little sneaky and using this board for inspiration and advice for over a year… But never posted before….
Maybe we'll run into each other somewhere someday!
-
- April 16, 2014 at 12:49 pm
Hi Lisa,
heres me preaching to the choir!?!
I see prof milward as well.. And occasionally dr feeney. Both have been amazing really.
to be honest, aside from the drug side effects, I have felt completely normal the whole time which can make it feel somewhat unreal (though that only lasts until I go in for a scan… Scanxiety is the worst!) I have metastases to bone, liver, lung and distal lymph nodes. My liver metastases went crazy while on the PD-1 trial and I got taken off but everyone else has apparently had great results, which makes it a pretty promising drug… Currently hoping braf/mek (and possibly yervoy which I haven't tried yet and will be my next step when braf/mek becomes ineffective) can hold everything in check until the med science people come up with the next amazing advance!
in general, I'm a fan of juicing vegetables, staying positive and exercising/eating well (chocolate and occasional alcohol binge excepted… You need to live, right?!?) The steroids to stop the dabrafenib fevers make me hungry a lot though and can make it a bit hard to control weight but I'm getting there.
I haven't been to any of the melanomawa events as yet but keep meaning to go… When I was first diagnosed and in the depths of "I'm going to die" depression, my mum put me onto Clint's story and Ross's book "living simply with cancer" and they both changed my outlook on having melanoma in a really positive way… Both have been an amazing inspiration really!
Ive been a little sneaky and using this board for inspiration and advice for over a year… But never posted before….
Maybe we'll run into each other somewhere someday!
-
- April 17, 2014 at 3:50 am
Hi Kate,
Yep, we also see Dr Feeney too occasionally. Due to the trial requirements, we have pretty much been going either 3 weekly or fortnightly since late 2010 (lucky we only live 10 mins away!) – so we often see different Drs. But Prof is the main man. We actually saw him yesterday!
I know what you mean re the side effects – Craig has pretty much no side effects at all – its pretty awesome really.
And scanxiety is the absolute worst! I think our worst was the first one after starting PD1 to see if it was working – it was the pits!
So have you had scans to determine if the braf/mek is working?
Yep, we came across Ross and Clint early on and just found Ross' book so helpful. He was nice enough to meet up with us a few times and his simple approach was so calming. This was right around the time Clint started up MelanomaWA. We went along to the early support groups which alot of people really find helpful, and of course we love going along to the various events to support.
I am not sure how you are sitting for support etc, but Clint is really lovely and approachable if you ever wanted to catch up with him for a chat. He is very inspiring and has a wonderful outlook – a very easy going guy.
Yep, I am sure we will come across each other one day – we probably have seen each other in the waiting room at Charlies.
🙂
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- April 19, 2014 at 8:22 am
I've had my 8 and 16 week scans and both have shown pretty drastic improvements… Particularly with my liver, which was the real worry as it was progressing and multiplying really fast before I started braf/mek. I haven't had any new tumours and all the existing ones are either shrinking or stable… The very scary one in my liver had halved in size by four weeks. And my LDH levels are almost normal now… They had been about 400 at one time which I think is 3-4 x the normal level…
The lovely thing about these drugs is I only have to see the doctor every 4 weeks which is a real blessing when you work full time! Though my bosses have just been the most amazing and understanding people ever the whole time!
ill keep an eye out in the waiting room next time and see if I can pick you out!
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- April 19, 2014 at 8:22 am
I've had my 8 and 16 week scans and both have shown pretty drastic improvements… Particularly with my liver, which was the real worry as it was progressing and multiplying really fast before I started braf/mek. I haven't had any new tumours and all the existing ones are either shrinking or stable… The very scary one in my liver had halved in size by four weeks. And my LDH levels are almost normal now… They had been about 400 at one time which I think is 3-4 x the normal level…
The lovely thing about these drugs is I only have to see the doctor every 4 weeks which is a real blessing when you work full time! Though my bosses have just been the most amazing and understanding people ever the whole time!
ill keep an eye out in the waiting room next time and see if I can pick you out!
-
- April 19, 2014 at 8:22 am
I've had my 8 and 16 week scans and both have shown pretty drastic improvements… Particularly with my liver, which was the real worry as it was progressing and multiplying really fast before I started braf/mek. I haven't had any new tumours and all the existing ones are either shrinking or stable… The very scary one in my liver had halved in size by four weeks. And my LDH levels are almost normal now… They had been about 400 at one time which I think is 3-4 x the normal level…
The lovely thing about these drugs is I only have to see the doctor every 4 weeks which is a real blessing when you work full time! Though my bosses have just been the most amazing and understanding people ever the whole time!
ill keep an eye out in the waiting room next time and see if I can pick you out!
-
- April 17, 2014 at 3:50 am
Hi Kate,
Yep, we also see Dr Feeney too occasionally. Due to the trial requirements, we have pretty much been going either 3 weekly or fortnightly since late 2010 (lucky we only live 10 mins away!) – so we often see different Drs. But Prof is the main man. We actually saw him yesterday!
I know what you mean re the side effects – Craig has pretty much no side effects at all – its pretty awesome really.
And scanxiety is the absolute worst! I think our worst was the first one after starting PD1 to see if it was working – it was the pits!
So have you had scans to determine if the braf/mek is working?
Yep, we came across Ross and Clint early on and just found Ross' book so helpful. He was nice enough to meet up with us a few times and his simple approach was so calming. This was right around the time Clint started up MelanomaWA. We went along to the early support groups which alot of people really find helpful, and of course we love going along to the various events to support.
I am not sure how you are sitting for support etc, but Clint is really lovely and approachable if you ever wanted to catch up with him for a chat. He is very inspiring and has a wonderful outlook – a very easy going guy.
Yep, I am sure we will come across each other one day – we probably have seen each other in the waiting room at Charlies.
🙂
-
- April 17, 2014 at 3:50 am
Hi Kate,
Yep, we also see Dr Feeney too occasionally. Due to the trial requirements, we have pretty much been going either 3 weekly or fortnightly since late 2010 (lucky we only live 10 mins away!) – so we often see different Drs. But Prof is the main man. We actually saw him yesterday!
I know what you mean re the side effects – Craig has pretty much no side effects at all – its pretty awesome really.
And scanxiety is the absolute worst! I think our worst was the first one after starting PD1 to see if it was working – it was the pits!
So have you had scans to determine if the braf/mek is working?
Yep, we came across Ross and Clint early on and just found Ross' book so helpful. He was nice enough to meet up with us a few times and his simple approach was so calming. This was right around the time Clint started up MelanomaWA. We went along to the early support groups which alot of people really find helpful, and of course we love going along to the various events to support.
I am not sure how you are sitting for support etc, but Clint is really lovely and approachable if you ever wanted to catch up with him for a chat. He is very inspiring and has a wonderful outlook – a very easy going guy.
Yep, I am sure we will come across each other one day – we probably have seen each other in the waiting room at Charlies.
🙂
-
- April 15, 2014 at 1:20 pm
Hi, Unfortunately it seems like we are part of the furniture down at Charlies – we have been hanging out down there with Prof Millward for around 7 years! The nurses there are all so lovely and supportive – very lucky.
Husband (Craig) was diagnosed back in 07 – stage 3. Neck dissection, interferon and radiation did the job for around 3 years, until he progressed to stage 4 in Dec 2010. Jumped onto the GSK Braf inhibitor trial and went 2.5 years on that (complete response). Then progressed again in Aug 2013, Jumped on the Merck PD-1 trial and again has had pretty much a complete response. He has only ever had 2 small spots, and both drugs have managed to keep them in check.
So to say he has been lucky is an understatement!
I dont like to put it all down to luck tho – he is very strong and healthy and conscious about leading a healthy lifestyle. We were more full on with this complementary stuff in the beginning (gave me something to do), and have now found a nice balance. He is currently studying, working and training for an Ironman!
Who do you see at Charlies? And how are you going?
Have you had anything to do with MelanomaWA at all? Craig has become quite good mates with Clint who runs it – they are doing the Busso Ironman together at the end of the year!
Nice to see another Perth person on the board – I bet some of the guys in the US must wonder where on earth Perth is!
Lisa
-
- April 15, 2014 at 12:34 pm
Also, have you made contact with the melanoma nurses there? They have made everything soooooo much easier for me, from booking appointments, to side effect advice and also some benefits the cancer council can give you… Definitely a resource to utilise! And they're lovely too!
-
- April 15, 2014 at 12:23 pm
Hi Lisa,
I've had the majority of my treatment and follow up at Charlie's but have also seen a specialist at royal perth and privately over the years.
Hows your hubby doing?
-
- April 15, 2014 at 10:58 am
Hey Kate,
We are also in Perth – my hubby the patient. Are you at Charlies?
Lisa
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- April 15, 2014 at 10:58 am
Hey Kate,
We are also in Perth – my hubby the patient. Are you at Charlies?
Lisa
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- April 15, 2014 at 9:24 pm
Hi Kate,
This is a known factor. It is not that anything has changed in you. It is more likely that a different manufacturers kit was used to test with. This is a rather upsetting fact when you are dealing with stage 4 and you find there can be such a discrepancy. I thing more Oncs are now becoming aware of this.
Mary -
- April 15, 2014 at 9:24 pm
Hi Kate,
This is a known factor. It is not that anything has changed in you. It is more likely that a different manufacturers kit was used to test with. This is a rather upsetting fact when you are dealing with stage 4 and you find there can be such a discrepancy. I thing more Oncs are now becoming aware of this.
Mary -
- April 15, 2014 at 9:24 pm
Hi Kate,
This is a known factor. It is not that anything has changed in you. It is more likely that a different manufacturers kit was used to test with. This is a rather upsetting fact when you are dealing with stage 4 and you find there can be such a discrepancy. I thing more Oncs are now becoming aware of this.
Mary-
- April 16, 2014 at 12:18 pm
Hi Mary,
it was the same test… First thing I checked as I have a medical science degree and so have a great interest in things like that! Though the test obviously has a false negative level which could have meant the first test just gave a false negative result when it should have tested positive… But even this is enough reason to get tested more than once!
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- April 16, 2014 at 12:18 pm
Hi Mary,
it was the same test… First thing I checked as I have a medical science degree and so have a great interest in things like that! Though the test obviously has a false negative level which could have meant the first test just gave a false negative result when it should have tested positive… But even this is enough reason to get tested more than once!
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- April 16, 2014 at 12:52 pm
And I'm really glad more oncs are becoming aware of it but I really think patients need to be aware too!
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- April 16, 2014 at 12:52 pm
And I'm really glad more oncs are becoming aware of it but I really think patients need to be aware too!
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- April 16, 2014 at 12:52 pm
And I'm really glad more oncs are becoming aware of it but I really think patients need to be aware too!
-
- April 16, 2014 at 12:18 pm
Hi Mary,
it was the same test… First thing I checked as I have a medical science degree and so have a great interest in things like that! Though the test obviously has a false negative level which could have meant the first test just gave a false negative result when it should have tested positive… But even this is enough reason to get tested more than once!
-
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