1. < Neuroendocrine Tumors (NETs)
Mentor

I have recently been diagnosed with my third neuroendocrine tumor

Posted by Teresa, Volunteer Mentor @hopeful33250, Mar 28, 2016

I have recently been diagnosed with my third neuroendocrine tumor. Has anyone else had experience in being treated for this rare type of tumor?

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

Kay | @irvkay312 | Mar 31, 2016
In reply to @hopeful33250 "At U of M, the specialist's office calls the patient for the appointment, so I'm waiting..." + (show)
@hopeful33250

At U of M, the specialist's office calls the patient for the appointment, so I'm waiting to hear back from his office. I'm looking forward to meeting with him as I have some questions. Two weeks ago I had a clear Octreoscan with no metastatic disease and no significant radiotracer uptake in the area where the lesion is, but CgA of 179. That seems somewhat inconsistent but the high CgA could be a result of taking a PPI med over the past month. I've switched back to Zantac. My previous surgeries were much more extensive with a resection of the duodenal bulb, so I'm pleased that this can be done with an endoscope.

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Do you or a family member have any form of Tuberous Sclerosis. Adenoma<br />
Sabacum, Ash Leaf spots, Shaggreen patches, ctc?<br />
<br />
Kay Kramer<br />
<br />
Those are carriers that materialize over time.<br />

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 31, 2016
In reply to @hopeful33250 "At U of M, the specialist's office calls the patient for the appointment, so I'm waiting..." + (show)
@hopeful33250

At U of M, the specialist's office calls the patient for the appointment, so I'm waiting to hear back from his office. I'm looking forward to meeting with him as I have some questions. Two weeks ago I had a clear Octreoscan with no metastatic disease and no significant radiotracer uptake in the area where the lesion is, but CgA of 179. That seems somewhat inconsistent but the high CgA could be a result of taking a PPI med over the past month. I've switched back to Zantac. My previous surgeries were much more extensive with a resection of the duodenal bulb, so I'm pleased that this can be done with an endoscope.

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Please keep us posted @hopeful33250. I hope they call soon. Waiting is so trying. I guess that's why they use the term "patient".

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 31, 2016
In reply to @hopeful33250 "At U of M, the specialist's office calls the patient for the appointment, so I'm waiting..." + (show)
@hopeful33250

At U of M, the specialist's office calls the patient for the appointment, so I'm waiting to hear back from his office. I'm looking forward to meeting with him as I have some questions. Two weeks ago I had a clear Octreoscan with no metastatic disease and no significant radiotracer uptake in the area where the lesion is, but CgA of 179. That seems somewhat inconsistent but the high CgA could be a result of taking a PPI med over the past month. I've switched back to Zantac. My previous surgeries were much more extensive with a resection of the duodenal bulb, so I'm pleased that this can be done with an endoscope.

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No, I've never heard of those terms before.  I'll have to look them up to find out what they are. 

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 31, 2016
In reply to @colleenyoung "Welcome back to Connect, @irvkay312. You sure have been through a lot. What are your doctors..." + (show)
@colleenyoung

Welcome back to Connect, @irvkay312.
You sure have been through a lot. What are your doctors saying about your sudden weight loss?

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What an amazing attitude you have Kay. I just went back and read some of your earlier messages. I appreciate you coming back to Connect to support others when you have so much going on yourself, and less energy. Just know that we're here whenever you want to talk.

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Kay | @irvkay312 | Mar 31, 2016
In reply to @colleenyoung "Welcome back to Connect, @irvkay312. You sure have been through a lot. What are your doctors..." + (show)
@colleenyoung

Welcome back to Connect, @irvkay312.
You sure have been through a lot. What are your doctors saying about your sudden weight loss?

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Thank you.<br />
<br />
Kay<br />

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 31, 2016

 Kay:  I'm always amazed at the tremendous strength in people who deal with chronic illness.  You are one of those heroes!

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gulzar | @gulzar | May 10, 2016
In reply to @kelseydm "Hi @hopeful33250! Welcome to Connect. I'm so sorry to hear about your diagnosis. I'm sure that..." + (show)
@kelseydm

Hi @hopeful33250! Welcome to Connect. I'm so sorry to hear about your diagnosis. I'm sure that is scary. What has your doctor recommended in terms of treatment? I'm tagging @lucci50, @bunnypawm, @irvkay312, @trouble, @upblueeyes, @michellecaforiaymailcom and @jimdc who have all dealt with various types of neuroendocrine tumors and may be able to provide some support and insight.

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Treatment with prrt or octreotide

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Kay | @irvkay312 | May 10, 2016
In reply to @kelseydm "Hi @hopeful33250! Welcome to Connect. I'm so sorry to hear about your diagnosis. I'm sure that..." + (show)
@kelseydm

Hi @hopeful33250! Welcome to Connect. I'm so sorry to hear about your diagnosis. I'm sure that is scary. What has your doctor recommended in terms of treatment? I'm tagging @lucci50, @bunnypawm, @irvkay312, @trouble, @upblueeyes, @michellecaforiaymailcom and @jimdc who have all dealt with various types of neuroendocrine tumors and may be able to provide some support and insight.

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Hi,<br><br>Sorry to hear about your diagnosis. One thing doctors and research have<br>shown is that most neuroendicrine tumors tend to be slower growing than<br>many other types. After my last Octreotide Scan (Nov. 2015) we saw a 2.6<br>cm grwth mestasized from Islet Cell (of pancreas) to liver, with 2 other<br>uptake area's that likely will grow. It also showed uptake to Spleen, GI<br>and GU tracts. In essence, my Oncologist said it best "when it gets to<br>your liver, it gets into your blood and you have to watch for changes from<br>there on.<br><br>CBC and other blood panel changes, tumor marker growth or decline, and your<br>systematic changes can help understand matter more thoroughly.<br><br>Kay<br>

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gaylejean | @gaylejean | May 10, 2016

I am interested in trading experiences and information with anyone who has neuroendocrine carcinoid tumors.

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3 replies
gaylejean | @gaylejean | May 10, 2016

I was diagnosed in April 2002 and have had monthly Sandostatin injections starting in 2008 and have had 2-3-6 month followups but have never had an octreotide scan.

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