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.

Zebra | @californiazebra | Sep 28, 2023
In reply to @mdmarquardt "Thanks for your update. I’ll have a 3rd injection of Lanreotide next week and have a..." + (show)
@mdmarquardt

Thanks for your update. I’ll have a 3rd injection of Lanreotide next week and have a marked loss of appetite since I started in August. I have 4 small metastatic NET liver tumors which saw a 47% progression from March - July so my drs opted for Lanreotide to try and stabilize them.

I’m hoping it’s the Lanreotide which is taking away my appetite and not the disease.

Any input would be much appreciated.

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@mdmarquardt the octreotide really took my appetite away the first year or so. I'm still not hungry, but at first I really didn't feel like eating at all so I'm betting it's the lanreotide taking away your appetite. Praying for good results on your scan. It's so hard with cancer because every new pain we get, of course our first thought is wondering if the cancer is causing it.

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pavlina60 | @pavlina60 | Sep 28, 2023
In reply to @nana120 "I’m not sure if the 10 months was an insurance approval item or not, but my..." + (show)
@nana120

I’m not sure if the 10 months was an insurance approval item or not, but my oncologist told me before yesterday’s injections that he would recommend me staying on them indefinitely. Now if I could gain some of the weight l have lost and continue to do so I would feel better about staying on them. How have you stayed on them so long with the diet limitations? BTW, I love chose Zebra as your name. I don’t know if you saw that one of the mentors gave me the nickname of unicorn zebra due to my apparently being the only person with both CLL and NETs. Not really something that I’m happy to be know for, but it’s what it is! Thanks for your encouragement!

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@nana120- I too have been losing weight for about 6mo post surgery, and 5 Lan injections. Then I went stable in weight for a month, and now started gaining lbs. As the NET sites suggest you can eat most foods as long as there are no ' consequences'. I still stay away from aged cheeses( although I love them!), tomatoes, watermelon. And I eat an egg a day plus 1/2 avocado. Some days I have a tablespoon of honey ( raw or manuka) on a toast. I eat tinned sardines 2-3 times a week, and fish ( branzino, cod, flounder). I add protein powder to banana- oatmeal pancakes. I think you can slowly get back to your usual diet, just small portions and eat often. Best! And keep on fighting!🦓💜

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1 reply
nana120 | @nana120 | Sep 29, 2023
In reply to @californiazebra "@nana120 I wasn't told of any dietary restrictions when I started my octreotide injections, but maybe..." + (show)
@californiazebra

@nana120 I wasn't told of any dietary restrictions when I started my octreotide injections, but maybe because I have lung NETs not any type of GI NETs. I don't have carcinoid syndrome and feel bad for those of you that do. I do know octreotide really took away my appetite and I already had a lot of food restrictions for many other ailments so I'm very limited in what I can eat anyway. I lost 5 pounds a month for the first six months much to the dismay of my oncologist. Then my weight stayed stable for 6 months. Then the next 6 months I gained 30 pounds. It was so weird because I felt my diet was the same all 18 months. I've since lost nearly 30 pounds again, but intentionally this time.

I do have several side effects from the octreotide. The most frustrating ones to me are bradycardia (slow heart rate -- down to mid to high-40s when resting). It also made me diabetic with a lot of weird glucose spikes. But I coughed constantly for 30 years and other respiratory issues prior to taking octreotide so I love octreotide. It was a game changer for me. Before, it was like having bronchitis for 30 years. It annoyed me and everyone around me. Try to go to work, a movie or out to lunch with that issue. My 50+ lung nodules were an incidental finding 15 years ago -- slow growing. I'm guessing they've been there for 30 years due to my symptoms. Took doctors 12 years to figure out what they were. Stumped everyone. They finally insisted on a biopsy when my breast cancer came back. Aha! Octreotide also increased some side-effects I was already having from my breast cancer meds, but again, worth it.

Well, nana120 the unicorn zebra, I also have a few zebra diseases, but even zebras run in herds so we're all in this together. Hope you can gain some weight back. 🙂

Great news for everyone else that is having good results with the lanreotide too!!!

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The first thing my Dallas NETs specialist told me was that I would not be having pizza or Mexican food for a while & for a Texan that is a tough call. I have come to the realization that after my 4th injection I have reached my “new normal” & as my daughter reminds me as least I have a remainder of my life. Thanks for the encouragement!

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nana120 | @nana120 | Sep 30, 2023
In reply to @pavlina60 "@nana120- I too have been losing weight for about 6mo post surgery, and 5 Lan injections...." + (show)
@pavlina60

@nana120- I too have been losing weight for about 6mo post surgery, and 5 Lan injections. Then I went stable in weight for a month, and now started gaining lbs. As the NET sites suggest you can eat most foods as long as there are no ' consequences'. I still stay away from aged cheeses( although I love them!), tomatoes, watermelon. And I eat an egg a day plus 1/2 avocado. Some days I have a tablespoon of honey ( raw or manuka) on a toast. I eat tinned sardines 2-3 times a week, and fish ( branzino, cod, flounder). I add protein powder to banana- oatmeal pancakes. I think you can slowly get back to your usual diet, just small portions and eat often. Best! And keep on fighting!🦓💜

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Since banana is a “no-no” on my lanreotide list, how are you able to eat them in your pancakes? Also, I cannot have any sweets & I see you have honey. Is that what you eat as syrup on the pancakes? I cannot imagine pancakes without syrup. The rest of your diet I agree with except the sardines (personal preference). Thanks!

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1 reply
nana120 | @nana120 | Sep 30, 2023
In reply to @californiazebra "@nana120 I wasn't told of any dietary restrictions when I started my octreotide injections, but maybe..." + (show)
@californiazebra

@nana120 I wasn't told of any dietary restrictions when I started my octreotide injections, but maybe because I have lung NETs not any type of GI NETs. I don't have carcinoid syndrome and feel bad for those of you that do. I do know octreotide really took away my appetite and I already had a lot of food restrictions for many other ailments so I'm very limited in what I can eat anyway. I lost 5 pounds a month for the first six months much to the dismay of my oncologist. Then my weight stayed stable for 6 months. Then the next 6 months I gained 30 pounds. It was so weird because I felt my diet was the same all 18 months. I've since lost nearly 30 pounds again, but intentionally this time.

I do have several side effects from the octreotide. The most frustrating ones to me are bradycardia (slow heart rate -- down to mid to high-40s when resting). It also made me diabetic with a lot of weird glucose spikes. But I coughed constantly for 30 years and other respiratory issues prior to taking octreotide so I love octreotide. It was a game changer for me. Before, it was like having bronchitis for 30 years. It annoyed me and everyone around me. Try to go to work, a movie or out to lunch with that issue. My 50+ lung nodules were an incidental finding 15 years ago -- slow growing. I'm guessing they've been there for 30 years due to my symptoms. Took doctors 12 years to figure out what they were. Stumped everyone. They finally insisted on a biopsy when my breast cancer came back. Aha! Octreotide also increased some side-effects I was already having from my breast cancer meds, but again, worth it.

Well, nana120 the unicorn zebra, I also have a few zebra diseases, but even zebras run in herds so we're all in this together. Hope you can gain some weight back. 🙂

Great news for everyone else that is having good results with the lanreotide too!!!

Jump to this post

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!

REPLY
2 replies
Zebra | @californiazebra | Sep 30, 2023
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!

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@nana120
So they didn’t remove your lung NET? Or had it already metastasized when first discovered?

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1 reply
nana120 | @nana120 | Sep 30, 2023
In reply to @californiazebra "@nana120 So they didn’t remove your lung NET? Or had it already metastasized when first discovered?" + (show)
@californiazebra

@nana120
So they didn’t remove your lung NET? Or had it already metastasized when first discovered?

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Yes, it had already metastasized & was only determined to have been the point of origin by the pathology report after a biopsy of the tumor in my liver.

REPLY
pavlina60 | @pavlina60 | Sep 30, 2023
In reply to @nana120 "Since banana is a “no-no” on my lanreotide list, how are you able to eat them..." + (show)
@nana120

Since banana is a “no-no” on my lanreotide list, how are you able to eat them in your pancakes? Also, I cannot have any sweets & I see you have honey. Is that what you eat as syrup on the pancakes? I cannot imagine pancakes without syrup. The rest of your diet I agree with except the sardines (personal preference). Thanks!

Jump to this post

I eat banana pancakes once or 2 times a week ( 1egg, 1/4 cup of oats, vanila, 1 mashed banana). I eat them with blueberries and strawberries. Not big on syrup. I also eat avocado. What I have been really strict and not eat is smoked salmon( which I love!) , aged cheeses, and salami; only occasional sweets( tea bisquits, due to low blood sugar in emergency or a table spoon of honey). I also eat liver ( anaemic)...
I also cheat with occasional piece of dark chocolate.

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ricki8 | @ricki8 | Oct 2, 2023

Hi Nana120
I can relate to you. I am having my 3rd Lanreotide this week. I was on a 4-week spread but lost it 1 week prior, so now I am trying a 3-week spread. Just had a CT scan and waiting to hear if my liver tumors are stable (they also grew 20% in 2 months). It's all so tricky and such a balancing act for each of us. Perhaps the best news is that, due to more sophisticated testing, more people are found with NETs which means more attention given and hopefully a cure.

REPLY
1 reply
nana120 | @nana120 | Oct 3, 2023
In reply to @ricki8 "Hi Nana120 I can relate to you. I am having my 3rd Lanreotide this week. I..." + (show)
@ricki8

Hi Nana120
I can relate to you. I am having my 3rd Lanreotide this week. I was on a 4-week spread but lost it 1 week prior, so now I am trying a 3-week spread. Just had a CT scan and waiting to hear if my liver tumors are stable (they also grew 20% in 2 months). It's all so tricky and such a balancing act for each of us. Perhaps the best news is that, due to more sophisticated testing, more people are found with NETs which means more attention given and hopefully a cure.

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A huge “YES” to more education for the general public even those in the medical field. I cannot count on both hands the number of people (some even at my local oncologist’s office) that never heard of NETs. When I was first diagnosed I thought it was even more rare than I have come to find out now. We are blessed to be on the cutting edge of new medications even if we are the test cases!

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