Was diagnosed with stage IV with primary in Duednum and 4 tumors in liver. Been on Octreotide for entire time. October scans show tumor in liver growing to 4cm from scan 6 months prior. Had liver embolization in December with follow up scan in March showing tumor shrinking. June Pet scan showed growth and other tumor growth including primary and now on femur and pancreas. Start 1st round of PRRT treatment in 2 weeks.
Hello @tjstaufr and welcome to the NETs support group on Mayo Connect. In another post, I read that you have been on this NETs journey for about 12 years, which began with the finding of a gastric tumor.
What is 'control again' mean.? Sorry .. so new to all of this. I am taking it means it came back and they are 'watching it' perhaps?
Thanks you for the well wishes. I am to go sometime on Friday. I do not have a time yet........sigh.. just want it done and over with. Prayers they get it all out.. with no reoccurrence EVER or any other freaking kind of the C word......... what a world wind of emotions. I have PTSD with the stuff my mom had ... wouldn't wish that on my worst enemy sigh.
I won't lie. The colonresection was a son of a Buick, and it hurt so freaking bad, but a week out, I'm feeling a lot better and I'm able to move around on my own versus before I couldn't even breathe without the pain. Thank you for asking, how are you
I won't lie. The colonresection was a son of a Buick, and it hurt so freaking bad, but a week out, I'm feeling a lot better and I'm able to move around on my own versus before I couldn't even breathe without the pain. Thank you for asking, how are you
You hopefully have it behind you. Each day is a new opportunity to get better. It may be difficult right now, but be thankful for that. I am doing well. Thank you for asking.
I won't lie. The colonresection was a son of a Buick, and it hurt so freaking bad, but a week out, I'm feeling a lot better and I'm able to move around on my own versus before I couldn't even breathe without the pain. Thank you for asking, how are you
I won't lie. The colonresection was a son of a Buick, and it hurt so freaking bad, but a week out, I'm feeling a lot better and I'm able to move around on my own versus before I couldn't even breathe without the pain. Thank you for asking, how are you
I'm so happy to hear your post-surgery report. Like @tomrennie, said it must feel good to have this part of your treatment behind you. As my surgeries for NETs was in the upper digestive tract, I'm wondering how the colon surgery has affected the way you eat. Were you given any dietary suggestions or restrictions?
A while back, I started a discussion, "How Do I Eat After Digestive Tract Surgery." Here is the link, https://connect.mayoclinic.org/discussion/how-do-i-eat-after-digestive-tract-surgery/
I would encourage you to read some of the posts and to post about your own experiences. I hope you continue to get your strength back and have good pain control. Will you continue to post about your progress?
I'm so happy to hear your post-surgery report. Like @tomrennie, said it must feel good to have this part of your treatment behind you. As my surgeries for NETs was in the upper digestive tract, I'm wondering how the colon surgery has affected the way you eat. Were you given any dietary suggestions or restrictions?
A while back, I started a discussion, "How Do I Eat After Digestive Tract Surgery." Here is the link, https://connect.mayoclinic.org/discussion/how-do-i-eat-after-digestive-tract-surgery/
I would encourage you to read some of the posts and to post about your own experiences. I hope you continue to get your strength back and have good pain control. Will you continue to post about your progress?
At a week out of surgery, I was not given any dietary restrictions, BUT I have placed myself on one for a little while. I eat more softer foods likes soups, peaches, rice and fresh fish when I can find it and the sort. Been wondering about other fruits and veggies. I will add mushrooms and items like that this week. To be honest, a lil scared about what the wrong foods for me will be like. I did learn that the bottom part of my colon, from my appendix area going up to about 12 inches or so was removed and parts of the area where the small intestine came into the larger was resected. So, I am still in the learning phase.
Yes I was given pain meds.. took several days for them to get it under control though. Not sure why, but it is what it is. No binder. From the appendix upward, they removed about 12 inches and part of the small intestine was resected and I assume reattached higher. Perhaps that is why no binder needed? YES>>> THANK THE GOOD LORD ABOVE.. Each day better than the day before!
Connect
Connect
Like
Helpful
Hug
Thank you
Hello @tjstaufr and welcome to the NETs support group on Mayo Connect. In another post, I read that you have been on this NETs journey for about 12 years, which began with the finding of a gastric tumor.
As you mentioned that you are now experiencing tumor growth on the femur and pancreas, you might find the following Connect discussions helpful,
--NET tumor of the pancreas
https://connect.mayoclinic.org/discussion/net-tumor-of-pancreas-1-cm-diagnosed/
--Gastric NET
https://connect.mayoclinic.org/discussion/37-years-old-and-gastric-net/
--NET in the spine
https://connect.mayoclinic.org/discussion/net-in-the-spine/?pg=7#comment-1199897
Have you had any resections of the duodenum for the NETs? My NET journey also started in the duodenum bulb. I have had three resections since 2003. Regarding your pancreatic NET, do you have any problems with your blood sugar?
-
Like -
Helpful -
Hug
1 Reaction@dchance1
Wishing you the best possible outcome and good results today! I look forward to hearing from you when it is convenient and comfortable for you.
-
Like -
Helpful -
Hug
1 ReactionHow are you feeling?
-
Like -
Helpful -
Hug
1 ReactionI won't lie. The colonresection was a son of a Buick, and it hurt so freaking bad, but a week out, I'm feeling a lot better and I'm able to move around on my own versus before I couldn't even breathe without the pain. Thank you for asking, how are you
-
Like -
Helpful -
Hug
5 ReactionsYou hopefully have it behind you. Each day is a new opportunity to get better. It may be difficult right now, but be thankful for that. I am doing well. Thank you for asking.
-
Like -
Helpful -
Hug
3 ReactionsDid they give you pain meds? Did they give you a binder to wear? I hope each day gets a little better for you.
-
Like -
Helpful -
Hug
2 ReactionsHello @dchance1
I'm so happy to hear your post-surgery report. Like @tomrennie, said it must feel good to have this part of your treatment behind you. As my surgeries for NETs was in the upper digestive tract, I'm wondering how the colon surgery has affected the way you eat. Were you given any dietary suggestions or restrictions?
A while back, I started a discussion, "How Do I Eat After Digestive Tract Surgery." Here is the link,
https://connect.mayoclinic.org/discussion/how-do-i-eat-after-digestive-tract-surgery/
I would encourage you to read some of the posts and to post about your own experiences. I hope you continue to get your strength back and have good pain control. Will you continue to post about your progress?
-
Like -
Helpful -
Hug
2 ReactionsAt a week out of surgery, I was not given any dietary restrictions, BUT I have placed myself on one for a little while. I eat more softer foods likes soups, peaches, rice and fresh fish when I can find it and the sort. Been wondering about other fruits and veggies. I will add mushrooms and items like that this week. To be honest, a lil scared about what the wrong foods for me will be like. I did learn that the bottom part of my colon, from my appendix area going up to about 12 inches or so was removed and parts of the area where the small intestine came into the larger was resected. So, I am still in the learning phase.
-
Like -
Helpful -
Hug
3 ReactionsYes I was given pain meds.. took several days for them to get it under control though. Not sure why, but it is what it is. No binder. From the appendix upward, they removed about 12 inches and part of the small intestine was resected and I assume reattached higher. Perhaps that is why no binder needed? YES>>> THANK THE GOOD LORD ABOVE.. Each day better than the day before!
-
Like -
Helpful -
Hug
3 Reactions