I have lung nets also. Had sbrt radiation for 2 of them and started sandostatin injections every four weeks to hopefully stabilize the very small ones. Will have a ct with contrast in November to see how it's working. I too have lost 23 pounds (but needed to!)
Hello @gesmone1 and welcome to the NET support group on Mayo Connect. I'm glad that you found this forum and are posting about your journey with lung nets. It is good to hear that you are feeling good. That certainly helps, doesn't it?
As I see that your NETs have spread to the vertebrae in the back, you might be interested in another discussion with others who have NETs in vertebrae. In this group you will meet members such as @irenag, @andy2020 and @rrlbees. I hope that they will share their experiences with you. Here is a link to that discussion: https://connect.mayoclinic.org/discussion/net-in-the-spine/
If you are comfortable sharing more, I'm wondering how long ago you were diagnosed? Also, were you having symptoms that led to the diagnosis or was the lung NET an incidental finding during a routine scan for something else?
I look forward to hearing from you again. Will you continue to post as you are able?
I too am Atypical lung net. It has spread to liver and several vertebrae in my back.
I have started Luthathera treatments at Moffitt Cancer center in Tampa. I still feel good. My second treatment is about 3 weeks away. I am also taking Sandostatin 30 mg every 4 weeks.
May God bless you on your journey.
Hello @gesmone1 and welcome to the NET support group on Mayo Connect. I'm glad that you found this forum and are posting about your journey with lung nets. It is good to hear that you are feeling good. That certainly helps, doesn't it?
As I see that your NETs have spread to the vertebrae in the back, you might be interested in another discussion with others who have NETs in vertebrae. In this group you will meet members such as @irenag, @andy2020 and @rrlbees. I hope that they will share their experiences with you. Here is a link to that discussion: https://connect.mayoclinic.org/discussion/net-in-the-spine/
If you are comfortable sharing more, I'm wondering how long ago you were diagnosed? Also, were you having symptoms that led to the diagnosis or was the lung NET an incidental finding during a routine scan for something else?
I look forward to hearing from you again. Will you continue to post as you are able?
I too am Atypical lung net. It has spread to liver and several vertebrae in my back.
I have started Luthathera treatments at Moffitt Cancer center in Tampa. I still feel good. My second treatment is about 3 weeks away. I am also taking Sandostatin 30 mg every 4 weeks.
May God bless you on your journey.
I have lung nets also. Had sbrt radiation for 2 of them and started sandostatin injections every four weeks to hopefully stabilize the very small ones. Will have a ct with contrast in November to see how it's working. I too have lost 23 pounds (but needed to!)
I too am Atypical lung net. It has spread to liver and several vertebrae in my back.
I have started Luthathera treatments at Moffitt Cancer center in Tampa. I still feel good. My second treatment is about 3 weeks away. I am also taking Sandostatin 30 mg every 4 weeks.
May God bless you on your journey.
Connect
Connect
Like
Helpful
Hug
@gesmone1
Many of us, including myself, had no symptoms and the NETs were found incidentally, when another diagnostic test was being done.
How many PRRT treatments have you had? Are you tolerating them well?
I pray your scan will be positive. My scan in July showed progression. That is why I have started the PRRT, Lutathera.
-
Like -
Helpful -
Hug
3 ReactionsIt was found during a CT last Nov 2022. I had not experienced any symptoms.
-
Like -
Helpful -
Hug
2 ReactionsHello @gesmone1 and welcome to the NET support group on Mayo Connect. I'm glad that you found this forum and are posting about your journey with lung nets. It is good to hear that you are feeling good. That certainly helps, doesn't it?
As I see that your NETs have spread to the vertebrae in the back, you might be interested in another discussion with others who have NETs in vertebrae. In this group you will meet members such as @irenag, @andy2020 and @rrlbees. I hope that they will share their experiences with you. Here is a link to that discussion: https://connect.mayoclinic.org/discussion/net-in-the-spine/
If you are comfortable sharing more, I'm wondering how long ago you were diagnosed? Also, were you having symptoms that led to the diagnosis or was the lung NET an incidental finding during a routine scan for something else?
I look forward to hearing from you again. Will you continue to post as you are able?
-
Like -
Helpful -
Hug
2 ReactionsI have lung nets also. Had sbrt radiation for 2 of them and started sandostatin injections every four weeks to hopefully stabilize the very small ones. Will have a ct with contrast in November to see how it's working. I too have lost 23 pounds (but needed to!)
-
Like -
Helpful -
Hug
2 ReactionsI too am Atypical lung net. It has spread to liver and several vertebrae in my back.
I have started Luthathera treatments at Moffitt Cancer center in Tampa. I still feel good. My second treatment is about 3 weeks away. I am also taking Sandostatin 30 mg every 4 weeks.
May God bless you on your journey.
-
Like -
Helpful -
Hug
6 ReactionsWe all have a rare cancer.
It is an Atypical Lung Neuroendocrine Carcinoma. It is a rare Cancer.
-
Like -
Helpful -
Hug
1 ReactionForgive me, but I never heard of that before. What is it?
Yes, I mean Lung Atypical NET
-
Like -
Helpful -
Hug
1 Reaction