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BBrakhane.
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- January 28, 2017 at 3:44 pm
Hello, I just discovered this site yesterday. Its very humbling reading a lot of these stories. I know that as scary as it has been I have been so very fortunate, and truly consider myself blessed in how this has gone so far. I apologize in advance for how detailed Im going to be, but as I have been reading, I found myself wanting more details from other peoples stories, I guess to find out if there were similarities, in timing, discoveries, treatments, etc, etc,….
I originally noticed a very tiny red dot in the middle of a mole in January of 2014. My father had had several small melanoma spots removed around 20 years ago, so I knew I was at risk. I am a neurosurgical consultant, so I know almost all of the surgeons where I live. I called the one Im closest with and told him I had melanoma. He said, "Hold on, can we at least do a biopsy first?" So we did the biopsy a few days later and it did come back as melanoma, surgery was scheduled for the next week. In the time between the biopsy and the surgery, while in the shower, a felt a knot in my right groin, I knew that was not a good thing! I called him and let him know immediately. He decided we better do a PET before the surgery, so we had a better idea at what exactly we might be dealing with. The PET revealed two spots, the mole on my right calf and a spot in my right groin, while not good news, it was better than finding out there were spots everywhere, and at least we knew what we were facing. He decided to take all the right groin lymph nodes in the surgery as well. The calf resection margins were clear, and only the one lymph node had evidence of disease, all the rest were clear. I was referred to Dr Linette at the Siteman Cancer Clinic in St Louis for follow up. He explained everything, and told me that they had tested my tumor and I was BRAF positive, I had NO idea what BRAF was, so I thought that was bad news, typically positive in a medical test, is bad news, isnt it? That was what I thought anyway. He explained the different drugs at the time and said that he really didnt think I needed to be on them, but if I wanted to, for peace of mind, that was fine and he would support that decision. I decided to hold off and just stick with seeing a dermatologist and surgeon for follow up.
Jump forward 18 months or so, and while in the hospital for an exam, an abdominal CT was done, and the bottom of my lung bases were incidentally observed, a small spot (7 mm) was noticed. This was extraneous to the reason for the exam, but with my history they decided to do another CT the next day on my chest to see if there was anything else of note. There wasnt, so the doctors said, its so small and only one, lets give it three months and see if there are any changes. Three months later, this was October of 2016, we did one more CT and that spot was still there, measuring 7.8 mm, but again, nothing else. Most of the Interventional Radiologists I work with said its too small to biopsy yet, lets give it a little more time, one of them said, no, I can get it, I think we should check it. So we did, it was a tough case, but he was able to get enough cells to get the info that it was indeed, melanoma. Back to Siteman! Dr Linette had moved on to another opportunity, and I met my new doctor, Dr Keller. I really liked him, which was great because I had really liked Dr Linette, and hated to hear he had departed. We agreed that a resection was the way to go, so that case was set up, in the mean time I had another PET done, and no other spots were detected. However, Dr Keller asked if I had ever had a brain MRI, I told him no, only the head part of the PET, he said he would feel better if we did the MRI, just in case. So we did, and of course, another tiny spot (2mm) was found in the cerebellum. Lung surgery was cancelled and an appt with a neurosurgeon was scheduled. He offered radiation, I only knew of fractionated, 30 day or so multiple treatment type of radiation, and I was taken aback at the thought of that, for a 2 mm lesion, when I knew from both of the Oncologists that there were drug options, and pretty good ones at that. Once he explained no, it was Gamma Knife, I said heck, lets do that today! We actually were able to do that the following week, that was done on Dec 15 2016. Everything went very smoothly there, and we were able to reschedule my lung resection for Dec 22. That surgery was kind of painful, but in the grand scheme of things, Ill take it without complaint! Tumor was about 8mm, but the total wedge removed was 11cm X 7.5cm X 3cm. Margins were clear. Dr Keller and I agreed, that even though there was no other known disease, it was probably a good idea to go ahead and start on some medication. He recommended Tafinlar and Mekinist. The surgeon asked that I not start them until after my follow up, just to be on the safe side for healing of the surgical sites. So, I have now been on the meds for one week. So far, so good, no issues, I am knocking on wood as I type this! Dr Keller has been very clear, that there is no other KNOWN disease at this time, and I am taking these, to ideally take care of anything floating out there, that we dont know about yet.
I spend a lot of time thinking about all of this, a lot of people have said that I am unlucky, but I truly believe I am VERY lucky in the manner in which these things have been discovered, and that even though none of this is what anyone would want to go through, how blessed I am at the options that I have, as far as treatment and great doctors!
Thanks for your stories, this was the first page I happened on to, where I was able to see what other people have encountered. It was educational, and I really appreciate the page and those of you here!
- Replies
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- January 28, 2017 at 4:39 pm
You are lucky that you have such a good team of Drs. And yes, you all are very proactive. Good luck with your treatment and keep us updated! So many of us here have poorly educated, uncaring Drs, so many are here to learn.
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- January 28, 2017 at 4:39 pm
You are lucky that you have such a good team of Drs. And yes, you all are very proactive. Good luck with your treatment and keep us updated! So many of us here have poorly educated, uncaring Drs, so many are here to learn.
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- January 28, 2017 at 4:39 pm
You are lucky that you have such a good team of Drs. And yes, you all are very proactive. Good luck with your treatment and keep us updated! So many of us here have poorly educated, uncaring Drs, so many are here to learn.
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- January 28, 2017 at 4:46 pm
Thank you for sharing your story, I wish you many years of NED status! There is a lot of good info on starting BRAF inhibitors earlier when it used to be use immunotherapy earlier and tafinlar and meknist later for a rapid response. New data has shown that patients like you can have a very durable response and be on these meds for years. If you don't mind me asking, what is your ldh?
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- January 28, 2017 at 4:46 pm
Thank you for sharing your story, I wish you many years of NED status! There is a lot of good info on starting BRAF inhibitors earlier when it used to be use immunotherapy earlier and tafinlar and meknist later for a rapid response. New data has shown that patients like you can have a very durable response and be on these meds for years. If you don't mind me asking, what is your ldh?
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- January 28, 2017 at 5:56 pm
HI anon, I am curious of this new data that you refer too? Please provide a link please and thank you.Ed
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- January 28, 2017 at 5:56 pm
HI anon, I am curious of this new data that you refer too? Please provide a link please and thank you.Ed
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- January 28, 2017 at 6:17 pm
http://www.onclive.com/web-exclusives/weber-compares-brafmek-immunotherapy-combos-in-melanoma
im glad we are finally seeing some analysis on different subsets of patients and as we know all these clinical trials are based on 100% BRAF positive patients
hopefully if sequenced correctly all these incredible medications, including immunotherapies, could make melanoma a chronic illness for many patients.
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- January 28, 2017 at 6:17 pm
http://www.onclive.com/web-exclusives/weber-compares-brafmek-immunotherapy-combos-in-melanoma
im glad we are finally seeing some analysis on different subsets of patients and as we know all these clinical trials are based on 100% BRAF positive patients
hopefully if sequenced correctly all these incredible medications, including immunotherapies, could make melanoma a chronic illness for many patients.
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- January 28, 2017 at 6:41 pm
Another good article on the subject from Dr. Luke
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- January 28, 2017 at 6:41 pm
Another good article on the subject from Dr. Luke
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- January 28, 2017 at 8:31 pm
Hi Anon, first off I don't have the Braf V600 mutation so most of the time I just skip over posts on that topic. What caught my eye was when you were talking about ,we used to think Immunotherapy first was better for patients like the poster. I find that the finding from the articles you gave us to be super interesting especially the part on OS being so much better for normal LDH and less than 3 disease sites being around 62%. The Combi-d trial is producing some pretty cool data. In the articles you posted Weber does say we need to wait and see the data from the comparison trials of Immunotherapy first or targeted therapy first to know for sure. Do to the fact that Melanoma patients are having such great result either path, it will take some time to know for sure. I remember being disapointed back in 2012 when I found out that I didn't have the braf v600 mutation and options were going to be chemo followed by ipi if I was to progress to stage 4 at that time in Canada. Nivo and Pembro had #'s not names yet, things have come a long way in a short period of time. Please feel free to lose the Anon button, we don't bite, at least most of the time!!!Best Wishes!!!Ed
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- January 28, 2017 at 8:31 pm
Hi Anon, first off I don't have the Braf V600 mutation so most of the time I just skip over posts on that topic. What caught my eye was when you were talking about ,we used to think Immunotherapy first was better for patients like the poster. I find that the finding from the articles you gave us to be super interesting especially the part on OS being so much better for normal LDH and less than 3 disease sites being around 62%. The Combi-d trial is producing some pretty cool data. In the articles you posted Weber does say we need to wait and see the data from the comparison trials of Immunotherapy first or targeted therapy first to know for sure. Do to the fact that Melanoma patients are having such great result either path, it will take some time to know for sure. I remember being disapointed back in 2012 when I found out that I didn't have the braf v600 mutation and options were going to be chemo followed by ipi if I was to progress to stage 4 at that time in Canada. Nivo and Pembro had #'s not names yet, things have come a long way in a short period of time. Please feel free to lose the Anon button, we don't bite, at least most of the time!!!Best Wishes!!!Ed
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- January 28, 2017 at 8:31 pm
Hi Anon, first off I don't have the Braf V600 mutation so most of the time I just skip over posts on that topic. What caught my eye was when you were talking about ,we used to think Immunotherapy first was better for patients like the poster. I find that the finding from the articles you gave us to be super interesting especially the part on OS being so much better for normal LDH and less than 3 disease sites being around 62%. The Combi-d trial is producing some pretty cool data. In the articles you posted Weber does say we need to wait and see the data from the comparison trials of Immunotherapy first or targeted therapy first to know for sure. Do to the fact that Melanoma patients are having such great result either path, it will take some time to know for sure. I remember being disapointed back in 2012 when I found out that I didn't have the braf v600 mutation and options were going to be chemo followed by ipi if I was to progress to stage 4 at that time in Canada. Nivo and Pembro had #'s not names yet, things have come a long way in a short period of time. Please feel free to lose the Anon button, we don't bite, at least most of the time!!!Best Wishes!!!Ed
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- January 28, 2017 at 6:41 pm
Another good article on the subject from Dr. Luke
-
- January 28, 2017 at 6:17 pm
http://www.onclive.com/web-exclusives/weber-compares-brafmek-immunotherapy-combos-in-melanoma
im glad we are finally seeing some analysis on different subsets of patients and as we know all these clinical trials are based on 100% BRAF positive patients
hopefully if sequenced correctly all these incredible medications, including immunotherapies, could make melanoma a chronic illness for many patients.
-
- January 28, 2017 at 5:56 pm
HI anon, I am curious of this new data that you refer too? Please provide a link please and thank you.Ed
-
- January 28, 2017 at 4:46 pm
Thank you for sharing your story, I wish you many years of NED status! There is a lot of good info on starting BRAF inhibitors earlier when it used to be use immunotherapy earlier and tafinlar and meknist later for a rapid response. New data has shown that patients like you can have a very durable response and be on these meds for years. If you don't mind me asking, what is your ldh?
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- January 28, 2017 at 6:08 pm
Hello,
At the heart of your story is your positive attitude. Others are amazed when I describe myself as lucky (having been through the war and the toll its taken) yet that positive attitude keeps me "normal", and normal does not scare my children, and does not alienate my friends. While your disease falls somewhere in the middle, your outlook keeps you on top. Please stay on the board as many can gain from the example you project.
Gary
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- January 28, 2017 at 6:08 pm
Hello,
At the heart of your story is your positive attitude. Others are amazed when I describe myself as lucky (having been through the war and the toll its taken) yet that positive attitude keeps me "normal", and normal does not scare my children, and does not alienate my friends. While your disease falls somewhere in the middle, your outlook keeps you on top. Please stay on the board as many can gain from the example you project.
Gary
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- January 28, 2017 at 6:08 pm
Hello,
At the heart of your story is your positive attitude. Others are amazed when I describe myself as lucky (having been through the war and the toll its taken) yet that positive attitude keeps me "normal", and normal does not scare my children, and does not alienate my friends. While your disease falls somewhere in the middle, your outlook keeps you on top. Please stay on the board as many can gain from the example you project.
Gary
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- January 28, 2017 at 6:25 pm
Welcome, BB!! Sorry for what you are having to deal with, but you have certainly found a group of great supporters and a wealth of info. Like Edster, I would love to see your data, anon. Here's all I have re BRAF as adjuvant (and as you can see it is more related to those with minimal, but unresectable disease):
The second article in this post –http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/straight-outta-boston-latest-melanoma.html
For what it's worth.
Hang in here, BB! Yours, celeste
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- January 28, 2017 at 6:25 pm
Welcome, BB!! Sorry for what you are having to deal with, but you have certainly found a group of great supporters and a wealth of info. Like Edster, I would love to see your data, anon. Here's all I have re BRAF as adjuvant (and as you can see it is more related to those with minimal, but unresectable disease):
The second article in this post –http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/straight-outta-boston-latest-melanoma.html
For what it's worth.
Hang in here, BB! Yours, celeste
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- January 28, 2017 at 7:05 pm
Yes, I have posted that data on my blog. It is clear that a lower LDH is almost always best from a prognositic view. And research is still trying to fine tune what treatment option is best for which patient and in what order. While some progress in that realm has been made, there is clearly much we don't know!
Here is one such report: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/12/factors-predictive-of-response.html
And another out of ASCO with a link to a discussion of treatment choice by Weber and Agarwala: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-cobimetinib-and-vermurafenib.html
I thought perhaps you had found additional information relative to BRAF as adjuvant for NED patients as the original poster is using it here. But, the more we know in any patient serves us all well! Thanks for sharing. Celeste
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- January 28, 2017 at 7:05 pm
Yes, I have posted that data on my blog. It is clear that a lower LDH is almost always best from a prognositic view. And research is still trying to fine tune what treatment option is best for which patient and in what order. While some progress in that realm has been made, there is clearly much we don't know!
Here is one such report: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/12/factors-predictive-of-response.html
And another out of ASCO with a link to a discussion of treatment choice by Weber and Agarwala: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-cobimetinib-and-vermurafenib.html
I thought perhaps you had found additional information relative to BRAF as adjuvant for NED patients as the original poster is using it here. But, the more we know in any patient serves us all well! Thanks for sharing. Celeste
-
- January 28, 2017 at 7:05 pm
Yes, I have posted that data on my blog. It is clear that a lower LDH is almost always best from a prognositic view. And research is still trying to fine tune what treatment option is best for which patient and in what order. While some progress in that realm has been made, there is clearly much we don't know!
Here is one such report: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/12/factors-predictive-of-response.html
And another out of ASCO with a link to a discussion of treatment choice by Weber and Agarwala: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-cobimetinib-and-vermurafenib.html
I thought perhaps you had found additional information relative to BRAF as adjuvant for NED patients as the original poster is using it here. But, the more we know in any patient serves us all well! Thanks for sharing. Celeste
-
- January 28, 2017 at 6:25 pm
Welcome, BB!! Sorry for what you are having to deal with, but you have certainly found a group of great supporters and a wealth of info. Like Edster, I would love to see your data, anon. Here's all I have re BRAF as adjuvant (and as you can see it is more related to those with minimal, but unresectable disease):
The second article in this post –http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/straight-outta-boston-latest-melanoma.html
For what it's worth.
Hang in here, BB! Yours, celeste
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- January 29, 2017 at 1:40 pm
Hi B Brakhane, I posted yesterday to Anon and I have some more information on the topic of targeted therapies vs Immunotherapies. I am not trying to highjack your post but interesting questions do tend to come so if you don't mind I have a couple of video presentation on the subject of targeted therapy vs Immunotherapy and the general use from early 2016 to late 2016 at ESMO. Best Wishes!!!Ed First video from Onclive https://www.youtube.com/watch?v=K-Ivcf_YnNQ second video from Onclive https://www.youtube.com/watch?v=P_WO3dvGmAs I will post the next two from ESMO in another post.
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- January 29, 2017 at 1:40 pm
Hi B Brakhane, I posted yesterday to Anon and I have some more information on the topic of targeted therapies vs Immunotherapies. I am not trying to highjack your post but interesting questions do tend to come so if you don't mind I have a couple of video presentation on the subject of targeted therapy vs Immunotherapy and the general use from early 2016 to late 2016 at ESMO. Best Wishes!!!Ed First video from Onclive https://www.youtube.com/watch?v=K-Ivcf_YnNQ second video from Onclive https://www.youtube.com/watch?v=P_WO3dvGmAs I will post the next two from ESMO in another post.
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- January 29, 2017 at 1:40 pm
Hi B Brakhane, I posted yesterday to Anon and I have some more information on the topic of targeted therapies vs Immunotherapies. I am not trying to highjack your post but interesting questions do tend to come so if you don't mind I have a couple of video presentation on the subject of targeted therapy vs Immunotherapy and the general use from early 2016 to late 2016 at ESMO. Best Wishes!!!Ed First video from Onclive https://www.youtube.com/watch?v=K-Ivcf_YnNQ second video from Onclive https://www.youtube.com/watch?v=P_WO3dvGmAs I will post the next two from ESMO in another post.
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- January 29, 2017 at 1:46 pm
From ESMO https://www.youtube.com/watch?v=0tL6uLzj6hc and the second one from ESMO about sequencing in Braf-Mutant Melanoma. https://www.youtube.com/watch?v=NE2KL43UtiA Just a small comment, that there is other videos in the series on youtube that go along with these videos. I find it interesting how Germany, France and Switzerland all have slight different views and they all agree that a study is needed to study when to come off targeted therapy and then switch to Immunotherapy, more data is needed!!!Best Wishes!!!Ed
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- January 29, 2017 at 1:46 pm
From ESMO https://www.youtube.com/watch?v=0tL6uLzj6hc and the second one from ESMO about sequencing in Braf-Mutant Melanoma. https://www.youtube.com/watch?v=NE2KL43UtiA Just a small comment, that there is other videos in the series on youtube that go along with these videos. I find it interesting how Germany, France and Switzerland all have slight different views and they all agree that a study is needed to study when to come off targeted therapy and then switch to Immunotherapy, more data is needed!!!Best Wishes!!!Ed
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- January 29, 2017 at 1:46 pm
From ESMO https://www.youtube.com/watch?v=0tL6uLzj6hc and the second one from ESMO about sequencing in Braf-Mutant Melanoma. https://www.youtube.com/watch?v=NE2KL43UtiA Just a small comment, that there is other videos in the series on youtube that go along with these videos. I find it interesting how Germany, France and Switzerland all have slight different views and they all agree that a study is needed to study when to come off targeted therapy and then switch to Immunotherapy, more data is needed!!!Best Wishes!!!Ed
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