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- This topic has 12 replies, 3 voices, and was last updated 10 years, 2 months ago by
jamieth29.
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- September 15, 2015 at 2:37 pm
Just wanted to give a update. I have been on the braf drugs for 6 weeks and they seem to have done there job. All of the spots have shrunk to tiny black dots. I saw Dr Luke on sept 8th and he told me the black spots are dead melanoma cells. He said when they die they leave the black pigment behind. All the spots were shrinking after 3 days of starting the drugs. I have a ct on thursday to see if the one 18mm node that showed on my last pet has shrunk also. I now will meet with the surgeon on the 29th to go over surgical plan. I know braf drugs most likely work for only a median of 10-11 months. My question is if these are dead cells and if one spot gets missed in the surgery is the short time i was on braf enough to keep spots from coming back? Not sure anyone can answer that but one of the questions i had. The long term plan is surgery to get lymph node and resection of in transit spots then recover and hopefully start some type of immunotherapy, Not sure what one yet. They are now offering the expanded excess trial of ipi/nivo at uw madison which is pretty close to me. But not sure how this is going to all play out if I’m rendered ned after surgery I dont think I’m eligable for that. If not I’m hoping to start a pd1. We’ll see…I’ll keep updating this thread.
Jamie
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- September 15, 2015 at 2:47 pm
The in transit spots I’ve been dealing with were along the scar from my wle and clnd that is really the same scar. Sorry a copied this from my mif post. Also i asked about a brain mri and Dr Luke said it is not needed at this time…my last mri was on 6/6. My ct is at home and I’m thinking of just asking my local oncologist to get me one. If nothing else for my own peace of mind. Not sure if i should tell Dr Luke I’m going to pursue one even though he thinks i don’t need one. Just don’t want to screw up any insurance crap if that is possibly why Dr Luke is holding off on it.-
- September 15, 2015 at 4:28 pm
Jamie, you might want to fill in your profile section. It helps people on the forum get a better sense of where you are at and where you have come from as far as treatments. The Mri you had in June on your brain was clear correct? Are you considered stage 4 at the present time Jamie? Where is the 18 mm tumor located that you talked about in your post? I am not sure if every radiation oncologist follows the same schedule but I have been having scans every 3 to 4 months on my brain since undergoing cyberknife treatment 2 years ago. If they didn't find anything last time for you, they might not be willing to do brain scans regularly. I know that to get into the ipi-nivo clinical trial 2 years ago, Bristol myer Squibb required a brain scan before being accepted. Wishing you the best!!! Ed
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- September 15, 2015 at 4:59 pm
Ed,
Your right been meaning to fill the profile section out. The 18mm lymph node is a iliac. As of right now im still stage 3 as it hasn’t spread beyond the local lymph basin. My last mri was clear i just thought they should be done at regular 3 month intervals. I have had 8 lymph nodes involved that all have been surgically removed and all local to groin basic. Iliacs as ive been told the deep groin nodes and will not change my staging. -
- September 15, 2015 at 4:59 pm
Ed,
Your right been meaning to fill the profile section out. The 18mm lymph node is a iliac. As of right now im still stage 3 as it hasn’t spread beyond the local lymph basin. My last mri was clear i just thought they should be done at regular 3 month intervals. I have had 8 lymph nodes involved that all have been surgically removed and all local to groin basic. Iliacs as ive been told the deep groin nodes and will not change my staging. -
- September 15, 2015 at 4:59 pm
Ed,
Your right been meaning to fill the profile section out. The 18mm lymph node is a iliac. As of right now im still stage 3 as it hasn’t spread beyond the local lymph basin. My last mri was clear i just thought they should be done at regular 3 month intervals. I have had 8 lymph nodes involved that all have been surgically removed and all local to groin basic. Iliacs as ive been told the deep groin nodes and will not change my staging. -
- September 15, 2015 at 4:28 pm
Jamie, you might want to fill in your profile section. It helps people on the forum get a better sense of where you are at and where you have come from as far as treatments. The Mri you had in June on your brain was clear correct? Are you considered stage 4 at the present time Jamie? Where is the 18 mm tumor located that you talked about in your post? I am not sure if every radiation oncologist follows the same schedule but I have been having scans every 3 to 4 months on my brain since undergoing cyberknife treatment 2 years ago. If they didn't find anything last time for you, they might not be willing to do brain scans regularly. I know that to get into the ipi-nivo clinical trial 2 years ago, Bristol myer Squibb required a brain scan before being accepted. Wishing you the best!!! Ed
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- September 15, 2015 at 4:28 pm
Jamie, you might want to fill in your profile section. It helps people on the forum get a better sense of where you are at and where you have come from as far as treatments. The Mri you had in June on your brain was clear correct? Are you considered stage 4 at the present time Jamie? Where is the 18 mm tumor located that you talked about in your post? I am not sure if every radiation oncologist follows the same schedule but I have been having scans every 3 to 4 months on my brain since undergoing cyberknife treatment 2 years ago. If they didn't find anything last time for you, they might not be willing to do brain scans regularly. I know that to get into the ipi-nivo clinical trial 2 years ago, Bristol myer Squibb required a brain scan before being accepted. Wishing you the best!!! Ed
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- September 15, 2015 at 2:47 pm
The in transit spots I’ve been dealing with were along the scar from my wle and clnd that is really the same scar. Sorry a copied this from my mif post. Also i asked about a brain mri and Dr Luke said it is not needed at this time…my last mri was on 6/6. My ct is at home and I’m thinking of just asking my local oncologist to get me one. If nothing else for my own peace of mind. Not sure if i should tell Dr Luke I’m going to pursue one even though he thinks i don’t need one. Just don’t want to screw up any insurance crap if that is possibly why Dr Luke is holding off on it. -
- September 15, 2015 at 2:47 pm
The in transit spots I’ve been dealing with were along the scar from my wle and clnd that is really the same scar. Sorry a copied this from my mif post. Also i asked about a brain mri and Dr Luke said it is not needed at this time…my last mri was on 6/6. My ct is at home and I’m thinking of just asking my local oncologist to get me one. If nothing else for my own peace of mind. Not sure if i should tell Dr Luke I’m going to pursue one even though he thinks i don’t need one. Just don’t want to screw up any insurance crap if that is possibly why Dr Luke is holding off on it. -
- September 15, 2015 at 2:49 pm
Thank you for the update and hoping all the best in your treatment. Keep you chin up, easy to say I know I have just been diagnosed with MM and it can be pretty frightening, but I am full of admiration for all you guys going through treatment. I will know tomorrow what treatment I will be going through.
Good luck with yours Jamie xxx
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- September 15, 2015 at 2:49 pm
Thank you for the update and hoping all the best in your treatment. Keep you chin up, easy to say I know I have just been diagnosed with MM and it can be pretty frightening, but I am full of admiration for all you guys going through treatment. I will know tomorrow what treatment I will be going through.
Good luck with yours Jamie xxx
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- September 15, 2015 at 2:49 pm
Thank you for the update and hoping all the best in your treatment. Keep you chin up, easy to say I know I have just been diagnosed with MM and it can be pretty frightening, but I am full of admiration for all you guys going through treatment. I will know tomorrow what treatment I will be going through.
Good luck with yours Jamie xxx
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