1. < Neuroendocrine Tumors (NETs)

NIH clinical study looking for the gene causing carcinoid cancer

Posted by Faith M @collielady, Aug 11, 2017

My nephew recently became the third family member to have a NET diagnosis - his a Merkel Cell carcinoma. My father's was carcinoid of the ilium and sister of the lung (she is doing fine 4 years post-surgery). This has lead me to learn as much as I can about carcinoid tumors and NETs. My research turned up a clinical study at the National Institute of Health looking for the gene causing carcinoid cancer in some families. For more information about this study ago to the NIH Clinical Studies website and do a search for 08-DK-0098. They are currently recruiting participants for this study.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 11, 2017

@collielady

Hello Faith:

I appreciate your sharing your family's story. I am so sorry to hear of all the NET diagnoses in your family. I'm sure that you know much more about NETs than many of us. We have several members who have others in their family with a NET diagnosis. I am sure that they will find this NIH study of interest.

I had not heard of Merkel cell carcinoma before but Mayo Clinic has some information about it on their website, http://www.mayoclinic.org/diseases-conditions/merkel-cell-carcinoma/home/ovc-20165247. It is apparently a NET that results in skin cancer.

Are your family members involved with large medical centers who are following their treatment? What type of treatments are available for the Merkel cell carcinoma?

Teresa

REPLY
2 replies
junebug15 | @junebug15 | Aug 12, 2017

Hi Faith: I was at the NIH last year for their familial carcinoid study, as my mother had carcinoid also. The study lasts about four days. They do about four scans, with the Gallium 68 being the last one. They like to compare the scans to see how much more the GA68 shows - and it does, and it did in my case. It is by far the most sensitive scan out there today. Everything is free, including the lodging for my husband while i was there. The people are super nice and after you complete the protocol you and all members of your family can be evaluated by the NIH for free. I did it not only for their research, but also to assure my family's inclusion at the NIH in the future if necessary. Let me know if you need any contact information. Good luck to you and yours.

Joan

REPLY
2 replies
Faith M | @collielady | Aug 12, 2017
In reply to @hopeful33250 "@collielady Hello Faith: I appreciate your sharing your family's story. I am so sorry to hear..." + (show)
@hopeful33250

@collielady

Hello Faith:

I appreciate your sharing your family's story. I am so sorry to hear of all the NET diagnoses in your family. I'm sure that you know much more about NETs than many of us. We have several members who have others in their family with a NET diagnosis. I am sure that they will find this NIH study of interest.

I had not heard of Merkel cell carcinoma before but Mayo Clinic has some information about it on their website, http://www.mayoclinic.org/diseases-conditions/merkel-cell-carcinoma/home/ovc-20165247. It is apparently a NET that results in skin cancer.

Are your family members involved with large medical centers who are following their treatment? What type of treatments are available for the Merkel cell carcinoma?

Teresa

Jump to this post

Hi Teresa

My sister went to a hospital near her in Delaware. Not sure which one but I do think it is a large one. Her tumors were found accidentally when she fell and thought she had broken a rib. Chest x-ray showed the tumors which turned out to be carcinoids. She is being followed with CgA marker tests every six months.

My nephew (not her son BTW) lives in Florida. His insurance would not cover him going to Tampa where the NET specialists are. His has had many basal cell and squamous cell cancers treated with surgery and radiation. His dermatologist sent him to a local surgeon for removal of the Merkel Cell tumor that was on his collar bone. And a breast cancer surgeon removed a few sentinel lymph nodes that were negative. His only followup will be with his dermatologist who checks him every few months.

I have just started reading "But You Look So Good..." and it seems that many patients have recurrences in the future. As far as I know neither my sister or nephew have problems with carcinoid syndrome.

Faith

REPLY
Faith M | @collielady | Aug 12, 2017
In reply to @junebug15 "Hi Faith: I was at the NIH last year for their familial carcinoid study, as my..." + (show)
@junebug15

Hi Faith: I was at the NIH last year for their familial carcinoid study, as my mother had carcinoid also. The study lasts about four days. They do about four scans, with the Gallium 68 being the last one. They like to compare the scans to see how much more the GA68 shows - and it does, and it did in my case. It is by far the most sensitive scan out there today. Everything is free, including the lodging for my husband while i was there. The people are super nice and after you complete the protocol you and all members of your family can be evaluated by the NIH for free. I did it not only for their research, but also to assure my family's inclusion at the NIH in the future if necessary. Let me know if you need any contact information. Good luck to you and yours.

Joan

Jump to this post

Hi Joan

So you are one of the 75-80 families they have in the study. I was surprised that is all they have since starting this back in 2008. I sent in my dad's liver biopsy and preliminary autopsy report saying the carcinoid started in his ilium. They will review this and let me know if they want to include my family in the study. If we are accepted they said we would probably go in next spring.
I just think it is good to help with whatever research is being done. Genetic testing will be the diagnostic method of the future. Plus the testing they also give you is good to get there also.
When did you and your mother go there? Have you returned for repeat tests?

Faith

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 12, 2017
In reply to @hopeful33250 "@collielady Hello Faith: I appreciate your sharing your family's story. I am so sorry to hear..." + (show)
@hopeful33250

@collielady

Hello Faith:

I appreciate your sharing your family's story. I am so sorry to hear of all the NET diagnoses in your family. I'm sure that you know much more about NETs than many of us. We have several members who have others in their family with a NET diagnosis. I am sure that they will find this NIH study of interest.

I had not heard of Merkel cell carcinoma before but Mayo Clinic has some information about it on their website, http://www.mayoclinic.org/diseases-conditions/merkel-cell-carcinoma/home/ovc-20165247. It is apparently a NET that results in skin cancer.

Are your family members involved with large medical centers who are following their treatment? What type of treatments are available for the Merkel cell carcinoma?

Teresa

Jump to this post

@collielady

Thanks for providing more details about their problems. While I have had 3 surgeries for carcinoids, I also do not have carcinoid syndrome, with the flushing, diarrhea, etc. The recurrences are stressful, though.

Teresa

REPLY
junebug15 | @junebug15 | Aug 13, 2017
In reply to @junebug15 "Hi Faith: I was at the NIH last year for their familial carcinoid study, as my..." + (show)
@junebug15

Hi Faith: I was at the NIH last year for their familial carcinoid study, as my mother had carcinoid also. The study lasts about four days. They do about four scans, with the Gallium 68 being the last one. They like to compare the scans to see how much more the GA68 shows - and it does, and it did in my case. It is by far the most sensitive scan out there today. Everything is free, including the lodging for my husband while i was there. The people are super nice and after you complete the protocol you and all members of your family can be evaluated by the NIH for free. I did it not only for their research, but also to assure my family's inclusion at the NIH in the future if necessary. Let me know if you need any contact information. Good luck to you and yours.

Joan

Jump to this post

Hi Faith: I went to the NIH in April, 2016. My mom never went there. She died at age 89 of a small bowel blockage which turned out to be carcinoid. She never knew that she had any kind of tumor. She had no flushing or pain, although she did suffer from palpitations, probably afib. As carcinoid was listed as a "cause of death" on her death certificate, the NIH decided to take me for their clinical trials. I have not returned to the NIH as I live in central Florida, so this year I had my GA68 done at the Moffitt Cancer Center in Tampa. I see Dr. David Metz at the University of Pa. in Philadelphia on a yearly basis, and have not been on any medications so far. Let me know if I can help you in any way. Best to you and yours.

Joan

REPLY
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