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I have recently been diagnosed with my third neuroendocrine tumor

Posted by @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?

REPLY

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.

@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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I have recently been seen at University of Michigan and they have recommended a doctor who specializes in removing these small carcinoids using an endoscopy procedure.  I have been referred to him and look forward to learning more about this and the type of follow up that will be needed in the future.

By the way, I just realized that I failed to mention that all three of these tumors have been located in the duodenal bulb. The first was .9 cm, in 2003; the second was .3 cm in 2005 and this one is 1 cm.

@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,

I am not one to seek pity, but the understanding of my conditions instead,
so as to set them aside without speculation, anxiety, worry, etc.

This reasoning came from my experience over 77 years now with epilepsy, due
to forceps delivery that caused pressure on the brain.

With my Islet Cell Cancer, diagnosed in 2009; I went through 28 radiation
treatments, two cycles of Adriamyacin and Streptozocin, 12 cycles of Sutent
and 3 of Affinitor.

I also have had Tuberous Sclerosis since 13 and am informed it’s on the
brain.

I feel that I have begun the last year of my life; since in less than 2
months I lost 17 pounds and 2 1/2 inches in my waist, along with muscle
pain equivalent to muscle wasting.

Take one day at a time within my healths means.

Kay Kramer

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

@hopeful33250, when will you see the specialist?

@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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My Oncologist says “they are basically treating cancer cases at my stage or
worse, so as to allow patients to have “a greater quality of life.”

In the last week, I went down to 179 lbs. 30 from January, 7.6 lbs in a
week. I feel it with less energy, more depletion of protein and of course
tiredness. All my doctors know and I’m trying to keep off mind to maintain
neurological stability.

Kay Kramer

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.

@colleenyoung

@hopeful33250, when will you see the specialist?

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Hopeful. I was diagnosed with Islet Cell Cancer, a neuroendricine adenoma
carcinoma back in July of 2009. At that time the Oncologist answered my
question as to how long my life might be; he said 5 years. Well, with
fruits and vegetables, etc. diet wise it came to November 2015 Octreotide
Scan. It showed mestasation to the liver along with uptake in two spots
there. Also, uptake was shown in the gallbladder, GI and GU tracts.

Now, these last two months things have likely taken hold with 30 pounds
weight loss without trying and the depletion of all protein.

That’s how I can see it. Get a lot of rest to preserve energy.

Kay Kramer

@colleenyoung

@hopeful33250, when will you see the specialist?

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Thanks, Kay.  I am working on getting more rest.  While I am retired now, I keep busy with a lot of volunteer activities.  I probably need to cut back.

@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
Sabacum, Ash Leaf spots, Shaggreen patches, ctc?

Kay Kramer

Those are carriers that materialize over time.

@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”.

@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. 

@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.

@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.

Kay

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