1. < Neuroendocrine Tumors (NETs)
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Has anyone taken Prolia for bone loss after NETs treatment?

Posted by sophiarose @sophiarose, Feb 24 12:10am

I am currently on octreotide every 28 days and I am currently stable after PRRT treatments
My NET has metastasized to my bones I have been diagnosed osteopenia with a high risk of fractures hence bone doctor wants to put me in Prolia
Has anyone taken this drug either with NETs or in conjunction with octreotide
I already have side effects from octreotide I read the potential side effects from Prolia honesty they are scary
I also have had a long journey of surgeries and treatments that didn’t work and I am finally stable after PRRT and scared to rock the boat with taking a drug that may be counter productive
Anyone can give any advice it would be very appreciated
Thank you

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Profile picture for kathyalbert501
kathyalbert501 | @kathyalbert501 | Feb 24 7:56am

I have Carcinoid Tumors and have been on Lanreotide for over three years. I had already started Prolia 18 months before we found the Carcinoid and have not noticed anything different since starting Lanreotide. The Lanreotide has reduced my CGA to below normal for the past year and a half. I get it every three weeks, not four. Sending you love, prayers and hugs. You are a very strong and special lady.

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2 replies
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sophiarose | @sophiarose | Feb 24 8:38am
In reply to @kathyalbert501 "I have Carcinoid Tumors and have been on Lanreotide for over three years. I had already..." + (show)
Profile picture for kathyalbert501 @kathyalbert501

I have Carcinoid Tumors and have been on Lanreotide for over three years. I had already started Prolia 18 months before we found the Carcinoid and have not noticed anything different since starting Lanreotide. The Lanreotide has reduced my CGA to below normal for the past year and a half. I get it every three weeks, not four. Sending you love, prayers and hugs. You are a very strong and special lady.

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@kathyalbert501
Thank you so much for your input

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pavlina60 | @pavlina60 | Feb 24 10:18am

I have been on Prolia for over 5 yrs, and on Lanreotide for almost 3. I have not noticed any counter indications. Also not any major side effects.

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Nancy VanHauen | @vanhauen | Feb 25 9:35am

I have been on Octreotide injections every 28 days for 2 years. Just had my first Prolia injection for Osteopenia 6 weeks ago with no side effects

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sophiarose | @sophiarose | Feb 25 12:10pm

Great
Thank you so much
Best wishes

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sophiarose | @sophiarose | Mar 5 12:32am
In reply to @pavlina60 "I have been on Prolia for over 5 yrs, and on Lanreotide for almost 3. I..." + (show)
Profile picture for pavlina60 @pavlina60

I have been on Prolia for over 5 yrs, and on Lanreotide for almost 3. I have not noticed any counter indications. Also not any major side effects.

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@pavlina60
Thank you everyone so much for all your support
I just did a DEXA the results are in I will be meeting with the Dr

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sophiarose | @sophiarose | Mar 5 12:41am
In reply to @kathyalbert501 "I have Carcinoid Tumors and have been on Lanreotide for over three years. I had already..." + (show)
Profile picture for kathyalbert501 @kathyalbert501

I have Carcinoid Tumors and have been on Lanreotide for over three years. I had already started Prolia 18 months before we found the Carcinoid and have not noticed anything different since starting Lanreotide. The Lanreotide has reduced my CGA to below normal for the past year and a half. I get it every three weeks, not four. Sending you love, prayers and hugs. You are a very strong and special lady.

Jump to this post

@kathyalbert501
Thank you strength is something we all need
My fear is I haven’t gotten much relief from my carcinoid symptoms from my injections
The diarrhea and flashing are really bad sometimes and the fatigue
All the same side effects that Prolia has
It’s not a pill you can just stop it is a 6 month shot
My quality of life gets real bad sometimes I don’t think I could handle it if it got worst
Thank you for sharing
Good luck

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phyllisden | @phyllisden | Mar 5 2:54pm

I was diagnosed with carcinoid of the small intestine in March, 2018 and had 10” of my intestine removed. The following year I had a blockage of my large intestine and they removed 11”. I started on Octreotide injections in April 2018. We started at 20mg. and eventually worked up to 30.
About 5 years ago after several breaks, I started Prolia shots. The first year or so was rough as I was having multiple UTIs. Then it just all calmed down and I have no side effects now. I’ve also had two rounds of PRRT (one at Mayo Phoenix and one four years later at UNM in Albuquerque. My scan in January showed no new tumors and no growth of the multiple ones scattered throughout my body.
My point is - I have considered this disease to be like a chronic condition that you manage as well as you can. Keep moving forward, get the best advice you can, Take care of yourself mentally and physically. Don’t let it dominate your life. And taking the treatment for the carcinoid and the osteopenia is a way of doing that. Good luck to you.

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sophiarose | @sophiarose | Mar 5 7:59pm
In reply to @phyllisden "I was diagnosed with carcinoid of the small intestine in March, 2018 and had 10” of..." + (show)
Profile picture for phyllisden @phyllisden

I was diagnosed with carcinoid of the small intestine in March, 2018 and had 10” of my intestine removed. The following year I had a blockage of my large intestine and they removed 11”. I started on Octreotide injections in April 2018. We started at 20mg. and eventually worked up to 30.
About 5 years ago after several breaks, I started Prolia shots. The first year or so was rough as I was having multiple UTIs. Then it just all calmed down and I have no side effects now. I’ve also had two rounds of PRRT (one at Mayo Phoenix and one four years later at UNM in Albuquerque. My scan in January showed no new tumors and no growth of the multiple ones scattered throughout my body.
My point is - I have considered this disease to be like a chronic condition that you manage as well as you can. Keep moving forward, get the best advice you can, Take care of yourself mentally and physically. Don’t let it dominate your life. And taking the treatment for the carcinoid and the osteopenia is a way of doing that. Good luck to you.

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@phyllisden
Thank you so much for your reply
Good luck to you as well

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