1. < Neuroendocrine Tumors (NETs)

Spreading NET

Posted by harley4650 @harley4650, Apr 7 12:46pm

Just a up date on my journey of net been on my shots octretide for two yrs. had four treatment of prrt, not going very well tumors have increase in my liver and there are more and larger. Mayo wants me to see if i qualfied for a trial study.Cancer seems to be in the liver only.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 9 6:35am
In reply to @michaelv "I’ve gone through four embolization procedures on my liver and I’m down to my last one..." + (show)
@michaelv

I’ve gone through four embolization procedures on my liver and I’m down to my last one on Friday. The tumors grew very fast once they started giving me the octreotide injections. Surgery wasn’t an option and as they have already said they can really only do histotripsy on smaller ones (it’s more of a maintenance for tumors once you know you have them). My largest tumor was the size of a grapefruit and required 2 embolization procedures to start killing off. This procedure on Friday is to get rid of two smaller ones. Oncologist wants me to start chemo pills afterwards but that won’t be until after my next scan in May. In case you were wondering most of my main symptoms have severely lessened (nausea/diarhea/constipation/etc) after the fourth embolization and my continued octreotide injections. Because of the size of the tumors it really took a lot out of me after each one, and as I’m only 49 I rushed to get them done sooner. This last one I was in no rush to get them done and I let my body heal. I lost a good 40lbs and I’m starting to put it back on. Keep up your fight and make sure you are looking at all of your options.

Jump to this post

Hello @michaelv and welcome to the NETs support group on Mayo Connect. You and your medical team have certainly been proactive in dealing with these tumors. Your experience should be helpful to others facing multiple NET tumors. I am also glad to hear that as a result of your embolizations, your symptoms have lessened. That must be very encouraging for you.

How long ago were your NETs diagnosed?

REPLY
2 replies
kim1965 | @kim1965 | Apr 9 7:34am
In reply to @bnjncrew "My husband has G3 Stage 4 insulinoma, Primary in Pancreas and “Too many to count in..." + (show)
@bnjncrew

My husband has G3 Stage 4 insulinoma, Primary in Pancreas and “Too many to count in liver- we are 2 years in may, octreotide for the two years also. Two embollizations, 5FU chemo, cap/Tem, Now PRRT 3rd treatment next week. He is doing well and we get scans this week to check. Today we go to the cancer cardiologist. We had a week in Florida with our sons families/grandbabies. He had some of the worst edema in his lower legs/ankles/feet I have ever seen. He increased his water pills for about 5 days and it helped. Could this have been from the increased activity or stress? He is still swollen in ankles so will discuss with cardiologist today. Wondering if anyone else gets the edema more with the PRRT? Just wondering what to expect with the next two treatments.

Jump to this post

Definitely discuss with your doctor's, all I can offer in my wife's case, is her weight has slowly gone up over the past year of CAP/TEM, Surgery on Pancreas, and Liver, and 4 PRRT treatments. She is now 30 days past her last PRRT treatment and is starting to lose weight again. Definitely, feeling better after now being treated for almost 2 years. You got this!

REPLY
michaelv | @michaelv | Apr 9 8:49am
In reply to @hopeful33250 "Hello @michaelv and welcome to the NETs support group on Mayo Connect. You and your medical..." + (show)
@hopeful33250

Hello @michaelv and welcome to the NETs support group on Mayo Connect. You and your medical team have certainly been proactive in dealing with these tumors. Your experience should be helpful to others facing multiple NET tumors. I am also glad to hear that as a result of your embolizations, your symptoms have lessened. That must be very encouraging for you.

How long ago were your NETs diagnosed?

Jump to this post

Funny story went to the hospital years ago and they never found anything other than an ulcer they attributed to my nausea. Last year it got to the point I was sick everyday went to a different hospital and on a scan they saw the tumors on my liver and did the biopsy on my pancreas to confirm where they were coming from. So my octreotides started last July and my embolizations started in December. Unless they are looking for pancreatic cancer they won’t find it since the symptoms are similar to other health issues. Be insistent if you aren’t feeling better and get those scans.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 9 9:36am
In reply to @michaelv "Funny story went to the hospital years ago and they never found anything other than an..." + (show)
@michaelv

Funny story went to the hospital years ago and they never found anything other than an ulcer they attributed to my nausea. Last year it got to the point I was sick everyday went to a different hospital and on a scan they saw the tumors on my liver and did the biopsy on my pancreas to confirm where they were coming from. So my octreotides started last July and my embolizations started in December. Unless they are looking for pancreatic cancer they won’t find it since the symptoms are similar to other health issues. Be insistent if you aren’t feeling better and get those scans.

Jump to this post

Hi @michaelv

Your message, about being insistent is important. Being proactive regarding your health care is vital.

REPLY
harley4650 | @harley4650 | Apr 9 6:10pm
In reply to @hopeful33250 "Hello @michaelv and welcome to the NETs support group on Mayo Connect. You and your medical..." + (show)
@hopeful33250

Hello @michaelv and welcome to the NETs support group on Mayo Connect. You and your medical team have certainly been proactive in dealing with these tumors. Your experience should be helpful to others facing multiple NET tumors. I am also glad to hear that as a result of your embolizations, your symptoms have lessened. That must be very encouraging for you.

How long ago were your NETs diagnosed?

Jump to this post

Its been 2 yrs. from net diagnosed,give you heads up never had embolization symptoms are worse and under hospice care

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 9 8:44pm
In reply to @harley4650 "Its been 2 yrs. from net diagnosed,give you heads up never had embolization symptoms are worse..." + (show)
@harley4650

Its been 2 yrs. from net diagnosed,give you heads up never had embolization symptoms are worse and under hospice care

Jump to this post

Hello @harley4650

I'm sorry to hear that your symptoms are worse. You say that you never had embolization. Was embolization not recommended as part of your treatment plan?

Are your symptoms better controlled now that you have hospice care?

REPLY
harley4650 | @harley4650 | Apr 10 8:49am

Never recommmended embolization in the plan, symptoms about the same, lot more relaxed with hospice care.

REPLY
1 reply
michaelv | @michaelv | Apr 10 9:42am
In reply to @harley4650 "Never recommmended embolization in the plan, symptoms about the same, lot more relaxed with hospice care." + (show)
@harley4650

Never recommmended embolization in the plan, symptoms about the same, lot more relaxed with hospice care.

Jump to this post

The first embolization I felt nothing and the doctor told me he was worried I’d be in a lot of pain because of the number of vials he used. For me on the third day my body starts shaking and I was getting bad night sweats. It was the same every time I had the embolization, I still felt bad on the 4th day but it starts to get better from there. My tumors are confined to my liver and my doctors feel positive about the results so far. I can eat whatever I want again I just have to do it in moderation, but I have changed my diet to having ensure plus in the morning with some sort of breakfast, I’ve reduced my overall beef intake and I eat chicken more often, you really have to focus on the protein as I lost over 40 pounds during this period because of my lack of appetite. God bless my wife for trying everything under the sun to get me to eat ( it really helps to have a partner pushing you) wishing you the best Harley.

REPLY
bnjncrew | @bnjncrew | Apr 28 5:56am

Recent scans prior to third PRRT looked good with about 20% shrinkage of largest tumors. He has come off the everolimus and the edema is much better. His sugars are normal and steady. (His NETS are insulinoma) The third PRRT treatment went well. We find the effects of this can take 4 or 5 days to kick in but mostly tired and gastric upset. Overall he is doing well and in my opinion the best I have seen in 2 years. Blood numbers are all good as well. My best to all going through this treatment.

REPLY
lyons1234 | @lyons1234 | May 11 6:42pm
In reply to @bnjncrew "My husband has G3 Stage 4 insulinoma, Primary in Pancreas and “Too many to count in..." + (show)
@bnjncrew

My husband has G3 Stage 4 insulinoma, Primary in Pancreas and “Too many to count in liver- we are 2 years in may, octreotide for the two years also. Two embollizations, 5FU chemo, cap/Tem, Now PRRT 3rd treatment next week. He is doing well and we get scans this week to check. Today we go to the cancer cardiologist. We had a week in Florida with our sons families/grandbabies. He had some of the worst edema in his lower legs/ankles/feet I have ever seen. He increased his water pills for about 5 days and it helped. Could this have been from the increased activity or stress? He is still swollen in ankles so will discuss with cardiologist today. Wondering if anyone else gets the edema more with the PRRT? Just wondering what to expect with the next two treatments.

Jump to this post

Hello bnjncrew,
I'm also having severe edema in my legs and feet. I have also developed acities. My Net specialist doesn't feel its from the
tumors or PRRT treatment I had 3 months ago. The net specialist and my Oncologist are looking at possibly cardiac as the cause. I had Carcinoid Heart Disease and had two valves replaced 1 yr ago (severe regurgation tricuspid and pulmonary valves.) I just had an electrocardiogram. It looks like I could have some issues there. The Oncologist wasn't real
specific in his explanation. I have an appointment with the Cardiologist.
Good Luck with your
treatments !

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.