› Forums › General Melanoma Community › Any Word from BrianP?
- This topic has 21 replies, 5 voices, and was last updated 8 years, 5 months ago by
Bubbles.
- Post
-
- November 18, 2015 at 1:49 pm
Has anyone heard from BrianP? He and I missed each other by a few hours at Duke last Monday (11/9). I know he was dealing with some liver mets and was considering surgery. Let me know if anyone has heard anything.
Thanks,
Kevin
- Replies
-
-
- November 18, 2015 at 11:55 pm
I'm doing well Kevin. Thanks for asking. Sorry I missed you at Duke. After my appointment with Dr. Stewart he came back to the room later and asked me if I knew Kevin Collins. Said you had mentioned me at your appointment earlier in the day. Thanks for.the Dr. Stewart recommendation by the way.
I'll give a quick update on my status. Not sure others will gain much from it but it does demonstrate that with melanoma treatments there definitely isn't a consensus amongst the experts.
I finished up my two year ipi/nivo trial in August. I had the option to continue treatment but after careful consideration I decided to stop the nivo treatments. I still have two stable tumors remaining. The next big question was whether or not to resect the tumors. Below is the actual sequence of the consults and their recommendations.
1) Dr. Weber from Moffitt recommended no surgery. Thinks my immune system can handle things for a "long time" on its own.
2) Dr. Slingluff from UVA recommends surgery. Feels like eventually the tumors will start growing again and one of the tumors is in a location that will cause problems if it starts growing.
3) Dr. Tyler from University of Texas at Galveston (formerly Duke) does not recommend surgery if the tumors are not lighting up on PET scan (they did not light up on last PET 18 months ago).
4) Dr. Stitzenburg from UNC recommends surgery. Confident she can do the surgery safely and still feels even with today's advancements in treatment that surgical resection is the way to go if you can.
5) Dr. Stewart and Dr. Salama from Duke. Feel surgery is way to risky due to the location of the tumor (tumor is near main artery to liver). Doesn't think the benefits of the surgery outweigh the risk.
So there you have it. 3 to 2 against surgery. I still have the deciding vote and I'm leaning toward the surgery but it's definitely not an easy decision. If the surgery wasn't risky it would be a no brainer but apparently according to a couple of the surgeons it is. I have a PET scheduled for 2 Dec. We'll see if that sheds any light on the subject.
As much as these treatment decisions suck and stress me out I really can't complain. Life is good. Others on here are going through way worse than me.
Hope you are doing well Kevin and still getting those good clean scans.
Brian
-
- November 19, 2015 at 3:35 pm
Thanks.
I live in NC so Duke, UNC, and UVA are all within driving distance. I've flown to Tampa a few times to see Dr. Weber (He's in NY now). Dr. Tyler who is in Galveston was my surgeon when he was at Duke. I reached out to him via email and he asked me to send him my latest scans. He gave me his thoughts via email. Pretty nice of him because there's nothing in it for him and I'm sure he's a very busy man.
So I haven't had to do a whole lot of flying. I would if I had to but I'm pretty fortunate to have a few top notch facilities near by.
I kinda remember you looking for a melanoma expert. Did you ever find someone and a treatment plan you are comfortable with?
Brian
-
- November 19, 2015 at 3:35 pm
Thanks.
I live in NC so Duke, UNC, and UVA are all within driving distance. I've flown to Tampa a few times to see Dr. Weber (He's in NY now). Dr. Tyler who is in Galveston was my surgeon when he was at Duke. I reached out to him via email and he asked me to send him my latest scans. He gave me his thoughts via email. Pretty nice of him because there's nothing in it for him and I'm sure he's a very busy man.
So I haven't had to do a whole lot of flying. I would if I had to but I'm pretty fortunate to have a few top notch facilities near by.
I kinda remember you looking for a melanoma expert. Did you ever find someone and a treatment plan you are comfortable with?
Brian
-
- November 19, 2015 at 3:35 pm
Thanks.
I live in NC so Duke, UNC, and UVA are all within driving distance. I've flown to Tampa a few times to see Dr. Weber (He's in NY now). Dr. Tyler who is in Galveston was my surgeon when he was at Duke. I reached out to him via email and he asked me to send him my latest scans. He gave me his thoughts via email. Pretty nice of him because there's nothing in it for him and I'm sure he's a very busy man.
So I haven't had to do a whole lot of flying. I would if I had to but I'm pretty fortunate to have a few top notch facilities near by.
I kinda remember you looking for a melanoma expert. Did you ever find someone and a treatment plan you are comfortable with?
Brian
-
- November 19, 2015 at 3:44 pm
Greg,
One thing I'd like to add about seeking second opinions. An added benefit is it gets you in that hospitals system. That can be invaluable down the line if things take a turn for the worse and you need to get in to see an expert quickly. It can take some time to get records transferred and sometimes time is not on your side. That expert also may not be taking new patients when you need him most so having your foot in the door is never a bad thing.
Brian
-
- November 19, 2015 at 3:44 pm
Greg,
One thing I'd like to add about seeking second opinions. An added benefit is it gets you in that hospitals system. That can be invaluable down the line if things take a turn for the worse and you need to get in to see an expert quickly. It can take some time to get records transferred and sometimes time is not on your side. That expert also may not be taking new patients when you need him most so having your foot in the door is never a bad thing.
Brian
-
- November 19, 2015 at 3:44 pm
Greg,
One thing I'd like to add about seeking second opinions. An added benefit is it gets you in that hospitals system. That can be invaluable down the line if things take a turn for the worse and you need to get in to see an expert quickly. It can take some time to get records transferred and sometimes time is not on your side. That expert also may not be taking new patients when you need him most so having your foot in the door is never a bad thing.
Brian
-
- November 19, 2015 at 4:47 pm
Glad to hear you are getting feedback – too bad it is a split decision on the best approach. I guess you'll have some more information on 12/2 to make the choice that is right for you.
The brain MRI at Duke was clean and my visit with Dr. Stewart showed no signs of any issues. Believe it or not, the PET/CT scan I had scheduled at Duke got cancelled that day because they ran out of PET contrast. I actually just did the scan locally in Charlotte yesterday. I should get official results in the next day or so, but I have been feeling very good so hopefully I will not get any surprises.
Keep us posted on your decision.
Kevin
-
- November 19, 2015 at 4:47 pm
Glad to hear you are getting feedback – too bad it is a split decision on the best approach. I guess you'll have some more information on 12/2 to make the choice that is right for you.
The brain MRI at Duke was clean and my visit with Dr. Stewart showed no signs of any issues. Believe it or not, the PET/CT scan I had scheduled at Duke got cancelled that day because they ran out of PET contrast. I actually just did the scan locally in Charlotte yesterday. I should get official results in the next day or so, but I have been feeling very good so hopefully I will not get any surprises.
Keep us posted on your decision.
Kevin
-
- November 19, 2015 at 4:47 pm
Glad to hear you are getting feedback – too bad it is a split decision on the best approach. I guess you'll have some more information on 12/2 to make the choice that is right for you.
The brain MRI at Duke was clean and my visit with Dr. Stewart showed no signs of any issues. Believe it or not, the PET/CT scan I had scheduled at Duke got cancelled that day because they ran out of PET contrast. I actually just did the scan locally in Charlotte yesterday. I should get official results in the next day or so, but I have been feeling very good so hopefully I will not get any surprises.
Keep us posted on your decision.
Kevin
-
- November 18, 2015 at 11:55 pm
I'm doing well Kevin. Thanks for asking. Sorry I missed you at Duke. After my appointment with Dr. Stewart he came back to the room later and asked me if I knew Kevin Collins. Said you had mentioned me at your appointment earlier in the day. Thanks for.the Dr. Stewart recommendation by the way.
I'll give a quick update on my status. Not sure others will gain much from it but it does demonstrate that with melanoma treatments there definitely isn't a consensus amongst the experts.
I finished up my two year ipi/nivo trial in August. I had the option to continue treatment but after careful consideration I decided to stop the nivo treatments. I still have two stable tumors remaining. The next big question was whether or not to resect the tumors. Below is the actual sequence of the consults and their recommendations.
1) Dr. Weber from Moffitt recommended no surgery. Thinks my immune system can handle things for a "long time" on its own.
2) Dr. Slingluff from UVA recommends surgery. Feels like eventually the tumors will start growing again and one of the tumors is in a location that will cause problems if it starts growing.
3) Dr. Tyler from University of Texas at Galveston (formerly Duke) does not recommend surgery if the tumors are not lighting up on PET scan (they did not light up on last PET 18 months ago).
4) Dr. Stitzenburg from UNC recommends surgery. Confident she can do the surgery safely and still feels even with today's advancements in treatment that surgical resection is the way to go if you can.
5) Dr. Stewart and Dr. Salama from Duke. Feel surgery is way to risky due to the location of the tumor (tumor is near main artery to liver). Doesn't think the benefits of the surgery outweigh the risk.
So there you have it. 3 to 2 against surgery. I still have the deciding vote and I'm leaning toward the surgery but it's definitely not an easy decision. If the surgery wasn't risky it would be a no brainer but apparently according to a couple of the surgeons it is. I have a PET scheduled for 2 Dec. We'll see if that sheds any light on the subject.
As much as these treatment decisions suck and stress me out I really can't complain. Life is good. Others on here are going through way worse than me.
Hope you are doing well Kevin and still getting those good clean scans.
Brian
-
- November 18, 2015 at 11:55 pm
I'm doing well Kevin. Thanks for asking. Sorry I missed you at Duke. After my appointment with Dr. Stewart he came back to the room later and asked me if I knew Kevin Collins. Said you had mentioned me at your appointment earlier in the day. Thanks for.the Dr. Stewart recommendation by the way.
I'll give a quick update on my status. Not sure others will gain much from it but it does demonstrate that with melanoma treatments there definitely isn't a consensus amongst the experts.
I finished up my two year ipi/nivo trial in August. I had the option to continue treatment but after careful consideration I decided to stop the nivo treatments. I still have two stable tumors remaining. The next big question was whether or not to resect the tumors. Below is the actual sequence of the consults and their recommendations.
1) Dr. Weber from Moffitt recommended no surgery. Thinks my immune system can handle things for a "long time" on its own.
2) Dr. Slingluff from UVA recommends surgery. Feels like eventually the tumors will start growing again and one of the tumors is in a location that will cause problems if it starts growing.
3) Dr. Tyler from University of Texas at Galveston (formerly Duke) does not recommend surgery if the tumors are not lighting up on PET scan (they did not light up on last PET 18 months ago).
4) Dr. Stitzenburg from UNC recommends surgery. Confident she can do the surgery safely and still feels even with today's advancements in treatment that surgical resection is the way to go if you can.
5) Dr. Stewart and Dr. Salama from Duke. Feel surgery is way to risky due to the location of the tumor (tumor is near main artery to liver). Doesn't think the benefits of the surgery outweigh the risk.
So there you have it. 3 to 2 against surgery. I still have the deciding vote and I'm leaning toward the surgery but it's definitely not an easy decision. If the surgery wasn't risky it would be a no brainer but apparently according to a couple of the surgeons it is. I have a PET scheduled for 2 Dec. We'll see if that sheds any light on the subject.
As much as these treatment decisions suck and stress me out I really can't complain. Life is good. Others on here are going through way worse than me.
Hope you are doing well Kevin and still getting those good clean scans.
Brian
- You must be logged in to reply to this topic.