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.

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 14 2:59pm
In reply to @ediee "My husband is 81, and had to give up a trial of both meds as he..." + (show)
@ediee

My husband is 81, and had to give up a trial of both meds as he was losing so much weight after just 3 months it was scary, he’s always been tall and slim so he couldn’t afford to keep losing the weight, he was eating well too, but the shots just seemed to exacerbate his diarrhea instead of helping it.
And his vitamin levels dropped precipitously.

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Hi @ediee, I wanted to check in. How is your husband doing now? How are you?

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 12 1:06pm
In reply to @orseijas "I am also taking Temozolomide as part of the CapTem treatment. It is really important not..." + (show)
@orseijas

I am also taking Temozolomide as part of the CapTem treatment. It is really important not to eat 3to 4 hours prior to taking the pill and take Zofran 60 to 30 minutes before the pill to avoid nausea. It worked for me. Good luck!

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Helpful, @orseijas, thank you. Do you experience any other side effects besides nausea? How are you doing?

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1 reply
canuk | @canuk | May 11 9:56pm

Greeting from Canada. So pleased to see that you folks are sharing your life on NETs. I have nicknamed it NUTS! I am a 78 yr old male that was diagnosed with NETs at age 65. Since then, I have been on a form of Lanreotide called Somatuline Autogel. Every 4 weeks I self inject 120mg subcutaneously with a very long needle . The somatuline is packed in a disposable syringe, is pre mixed, and is very easy to use. It is delivered to my neighborhood pharmacy for pick up. This has been a real help to me since I do not have to see a doctor or a nurse for the injection. As well, with proper refrigeration (ice packs), I can take my medication with me if I happen to be going on a trip. Have hope all. I have survived 13 years with NETs. Still going strong.

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1 reply
nana120 | @nana120 | May 3 4:54pm
In reply to @ediee "My husband is 81, and had to give up a trial of both meds as he..." + (show)
@ediee

My husband is 81, and had to give up a trial of both meds as he was losing so much weight after just 3 months it was scary, he’s always been tall and slim so he couldn’t afford to keep losing the weight, he was eating well too, but the shots just seemed to exacerbate his diarrhea instead of helping it.
And his vitamin levels dropped precipitously.

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I’m so sorry this happened to him. I guess it is proof that each person may react differently. Although, I did lose weight initially it leveled out & I was able to maintain once I got the diet restrictions figured out. Also, I tended to experience constipation rather than diarrhea. I hope he can find something that works for him.

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ediee | @ediee | May 3 3:22pm
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.

Jump to this post

My husband is 81, and had to give up a trial of both meds as he was losing so much weight after just 3 months it was scary, he’s always been tall and slim so he couldn’t afford to keep losing the weight, he was eating well too, but the shots just seemed to exacerbate his diarrhea instead of helping it.
And his vitamin levels dropped precipitously.

REPLY
2 replies
pavlina60 | @pavlina60 | May 3 8:21am
In reply to @nana120 "Good morning, NET group. My saga continues with the introduction of a new med protocol, Temozolomide...." + (show)
@nana120

Good morning, NET group. My saga continues with the introduction of a new med protocol, Temozolomide. My last scan showed significant growth in my liver tumor, so the lanreotide was NOT working. Last week was the toughest week I have had since my diagnosis & I have to repeat it every 3 weeks then a CT scan will be done in about 3-4 mos to determine its effectiveness. Has anyone heard that fasting before chemo makes it more effective? Since I’m struggling to avoid weight loss, that would seem counterproductive.
Side note: I purchased a wig because I’m told my hair loss will be significant by the next round & my granddaughter’s wedding is June 1st. Her dress code is black & white, so my zebra look will be right on point! 🦓🤣

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My dear! Hugs and strength to you is my wish! I cannot say about fasting before chemo, but I definitely felt better without food before my Lanreotide injection! And a tablet of Zofran about 10 min before. Then I had crackers and swiss cheese after.
I like your attitude - true zebra!🦓💜💜 Hugs and love!
P.s. my son' s wedding is next June, I hope I could be there for them 🤞

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ricki8 | @ricki8 | May 2 6:49pm
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.

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My experience:
After discovery in Mar./2023 of a Grade 2, Small intestine NETs that metastasized to the liver (5 large tumors) by Aug. /2023 I was put on Lanreotide Then, in Nov. I had Bland Embolization on the largest (which worked to stabilize and shrink a little bit). Then, by Jan/2024 put onto PRRT (Lutathera) in Jan/2024. for 2 sessions and found that my tumors had aggressively grown. My Oncologist now wants to try the Captem (chemo) route, but, the talk is that it works better for Pancreatic cancers, so I am scheduled to have the new Histotripsy. I will report back if that works. Re: my jacket (below). I did get to wear it 2 times.

REPLY
orseijas | @orseijas | May 2 9:15am
In reply to @nana120 "Good morning, NET group. My saga continues with the introduction of a new med protocol, Temozolomide...." + (show)
@nana120

Good morning, NET group. My saga continues with the introduction of a new med protocol, Temozolomide. My last scan showed significant growth in my liver tumor, so the lanreotide was NOT working. Last week was the toughest week I have had since my diagnosis & I have to repeat it every 3 weeks then a CT scan will be done in about 3-4 mos to determine its effectiveness. Has anyone heard that fasting before chemo makes it more effective? Since I’m struggling to avoid weight loss, that would seem counterproductive.
Side note: I purchased a wig because I’m told my hair loss will be significant by the next round & my granddaughter’s wedding is June 1st. Her dress code is black & white, so my zebra look will be right on point! 🦓🤣

Jump to this post

I am also taking Temozolomide as part of the CapTem treatment. It is really important not to eat 3to 4 hours prior to taking the pill and take Zofran 60 to 30 minutes before the pill to avoid nausea. It worked for me. Good luck!

REPLY
1 reply
nana120 | @nana120 | May 2 8:32am

Good morning, NET group. My saga continues with the introduction of a new med protocol, Temozolomide. My last scan showed significant growth in my liver tumor, so the lanreotide was NOT working. Last week was the toughest week I have had since my diagnosis & I have to repeat it every 3 weeks then a CT scan will be done in about 3-4 mos to determine its effectiveness. Has anyone heard that fasting before chemo makes it more effective? Since I’m struggling to avoid weight loss, that would seem counterproductive.
Side note: I purchased a wig because I’m told my hair loss will be significant by the next round & my granddaughter’s wedding is June 1st. Her dress code is black & white, so my zebra look will be right on point! 🦓🤣

REPLY
2 replies
katinka58 | @katinka58 | May 1 4:56pm
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.

Jump to this post

My husband was switched from Octreotide to Lanreoride 4 mos. ago & he said he has a decreased appetite since bring on this shot

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