1. < Neuroendocrine Tumors (NETs)

Updating about My Lanreotide Injections & CT Scan

Posted by nana120 @nana120, Sep 26, 2023

As I promised I would after 3 months of lanreotide injections I’m reporting the results of my oncologist’s CT scan with contrast to determine whether the NETs tumor in my liver was still growing. The results showed that after a previous growth rate of 20% for the prior 4 months it now shows to be stable with no growth. I received my 4th injection today and will continue for the remainder of my original 10 month plan.

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

stevestenberg31 | @stevestenberg31 | Apr 16 5:30pm
In reply to @nana120 "I’m trying to stay informed, but my NET specialist has told me he thinks there isn’t..." + (show)
@nana120

I’m trying to stay informed, but my NET specialist has told me he thinks there isn’t enough data yet when I asked him about Histrotripsy. I haven’t heard about Lutetium/Lu 177 dotatate, so I’ll check into it. My only dotatate PET scan was only partially paid by my insurance. The contrast medication was not paid only the scan itself. I ended up owing $420 out of pocket even after several conversations with the insurance company. My basic logic tells me the scan without the contrast was useless, but that is still what happened.

Jump to this post

My oncologist said the same thing about Histrotripsy too.

REPLY
nana120 | @nana120 | Apr 16 5:55pm
In reply to @michaelv "The contrast allows them to see the cancer and where it’s spreading to. I get these..." + (show)
@michaelv

The contrast allows them to see the cancer and where it’s spreading to. I get these scans done every 3 months so yeah they are most likely missing what they should be looking for

Jump to this post

@michaelv I may not have made my post clear. I did have the contrast, but I had to pay out of pocket for it.

REPLY
1 reply
michaelv | @michaelv | Apr 16 6:12pm
In reply to @nana120 "@michaelv I may not have made my post clear. I did have the contrast, but I..." + (show)
@nana120

@michaelv I may not have made my post clear. I did have the contrast, but I had to pay out of pocket for it.

Jump to this post

Yeah insurance is terrible everywhere. I met my out of pocket max on my first visit of the year which is 6800. Then there’s the fees you have to fight which are hidden. The healthcare provider negotiates a price insurance provider and they pass the cost on to us the consumer. We then have to fight thru a third party who lowers or gets the amount thrown out. It’s really ridiculous how all of this gets passed on to us.

REPLY
KC | @kc43 | Apr 22 1:32pm
In reply to @rose4jim2417 "Sorry you haven’t had luck with the lanreotide injections. My husband was diagnosed as a high..." + (show)
@rose4jim2417

Sorry you haven’t had luck with the lanreotide injections. My husband was diagnosed as a high grade two net with an 8.8 cm mass on the pancreas and inumerable spots on the liver. His Oncologist at U Of M immediately put him on monthly injections and CAP/TEM Two weeks on and two weeks off. After one year of this oral chemo he had a 40% reduction of his cancer. Since then he has had two Y 90 Treatments, one to each half of his liver after the necessary mapping procedure. We are waiting the three months necessary for results of these treatments but his cancer is stable for now. Good luck to you. Hope this helps.

Jump to this post

What is the Y 90 treatment? I also have had good results with the Lanreotide plus the Capecitabine & Temozolomide treatment but now after 5 years there’s concern about bone marrow loss so I just took my last chemo cycle and will remain on the Lanreotide only. Cat scans will determine next steps & PRRT is possibly the next. Having concerns about radiation. Lots of new treatments are coming out recently. Any thoughts appreciated

REPLY
2 replies
rose4jim2417 | @rose4jim2417 | Apr 22 4:02pm
In reply to @kc43 "What is the Y 90 treatment? I also have had good results with the Lanreotide plus..." + (show)
@kc43

What is the Y 90 treatment? I also have had good results with the Lanreotide plus the Capecitabine & Temozolomide treatment but now after 5 years there’s concern about bone marrow loss so I just took my last chemo cycle and will remain on the Lanreotide only. Cat scans will determine next steps & PRRT is possibly the next. Having concerns about radiation. Lots of new treatments are coming out recently. Any thoughts appreciated

Jump to this post

The Y 90 treatment was to my husband‘s liver, 1/2 at a time, after a mapping procedure using dye only to see if his body tolerated it. It is a procedure done through the groin feeding microscopic beads filled with radiation to kill the tumors in my husband‘s liver. It has been around for many years as one Mayo clinic NETS member said he had it done 13 years ago. Results, take about three months to show up on a scan. It doesn’t always work but we are hopeful. Good luck to you.

REPLY
kevinmonroemi | @kevinmonroemi | Apr 23 10:55am
In reply to @kc43 "What is the Y 90 treatment? I also have had good results with the Lanreotide plus..." + (show)
@kc43

What is the Y 90 treatment? I also have had good results with the Lanreotide plus the Capecitabine & Temozolomide treatment but now after 5 years there’s concern about bone marrow loss so I just took my last chemo cycle and will remain on the Lanreotide only. Cat scans will determine next steps & PRRT is possibly the next. Having concerns about radiation. Lots of new treatments are coming out recently. Any thoughts appreciated

Jump to this post

I had the Y90 In August of 2022 at University of Michigan as a follow up to 7 months of Captem that did not shrink my tumors. Just had my 35th Lanreotide injection also. I have about 30 tumors that desperately needed shrinking as I have functioning tumors (gastrinomas) they were causing a lot of problems treatment itself wasn’t too bad they did right side of liver then 30 days later the left. I did have a good response some tumors were killed and most of the others had reduction been stable for about 20 months. Going on a new treatment as soon as progression begins probably soon as this treatment only lasts so long. It is a high dose radiation with possible side effects

REPLY
vinnie694 | @vinnie694 | Apr 24 8:44am
In reply to @nana120 "After 8 months of lanreotide my latest CT scan shows growth in my tumors, so my..." + (show)
@nana120

After 8 months of lanreotide my latest CT scan shows growth in my tumors, so my NET doctor discontinued it. I am to start an oral chemo,
Temozolomide, next week for 5 days on & 3 weeks off. If you have had experience with it, please share.

Jump to this post

After a year on Octreotide 2 of my 16 Tumors showed some growth, ( No New Tumors)the Dr. moved my next MRI up a month and we will discuss what the next step will be..
Never lose Hope.

REPLY
nana120 | @nana120 | Apr 24 9:12am

My “next step” is that my NET oncologist started me on Temozolomide this week 5 days at a time every 4 weeks. Most people here refer to cap/tem & I’m only on the one medication plus an anti nausea prior to each 240 mg dose. He will do blood work frequently & another scan in 3-4 months. Two days in so far only extremely exhausted & joints ache, but feeling OK otherwise. Zebras are tough folks! Hang on everyone ‼️

REPLY
1 reply
nana120 | @nana120 | Apr 24 9:20am
In reply to @nana120 "Just FYI, my NETs in my liver that is the largest tumor is metastatic from my..." + (show)
@nana120

Just FYI, my NETs in my liver that is the largest tumor is metastatic from my lung and the oncologist & radiologist hardly pay any attention to the lung NET even though it is considered to be the original source. Sometimes I leave the office visit with more questions than before I went in. Thank goodness for a group like this to share experiences!

Jump to this post

Your case sounds almost like mine. My lung tumor is rarely mentioned & the focus seems to be on my liver tumor. Additionally, I have a growth in the thigh muscle that has yet to have a biopsy & may or may not be a NET.

REPLY
pavlina60 | @pavlina60 | Apr 24 10:42am
In reply to @nana120 "My “next step” is that my NET oncologist started me on Temozolomide this week 5 days..." + (show)
@nana120

My “next step” is that my NET oncologist started me on Temozolomide this week 5 days at a time every 4 weeks. Most people here refer to cap/tem & I’m only on the one medication plus an anti nausea prior to each 240 mg dose. He will do blood work frequently & another scan in 3-4 months. Two days in so far only extremely exhausted & joints ache, but feeling OK otherwise. Zebras are tough folks! Hang on everyone ‼️

Jump to this post

Hugs to you, nana120! You are strong! You can beat this! Stay positive!
Stay hydrated and well nourished, so you have strength! 💜🦓

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