CARCINOID CA - NOW CALLED NET'S (Neuroendocrine Tumors)-

Posted by carcinoid @carcinoid, Thu, Jan 17 3:48pm

2016 my husband lost his colon and part of his small intestine following an colonoscopy. He now has an ileostomy which makes treating the cancer more difficult as he can not have any abdominal surgery anymore. He was on life support at least 2 months and spent a month in rehab learning how to walk, and regain some muscle. I never thought he would walk again, but he is. It is a slow cancer but it spread to his liver and he now has 7 tumors on his liver. There is no treatment to fight the cancer, only sandostatin to control the symptoms. Anyone know anything on the horizon to rid of us this terrible terror of pending unknown trouble.

Hi @carcinoid, You'll notice that I moved your message to the Neuroendocrine Tumors group where discussions are dedicated to NETs. Here you will certainly meet many members who will support you and your husband on this very frightening journey. I'd like to start by introducing you to @hopeful33250 @tresjur @marilyn2525 @gaylejean @ajnaudra and @tomewilson to name a few.

You are not alone.

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Hello @carcinoid and let me add my welcome to that of Colleens. I am sorry to hear of the extensive surgery your husband had and for the time he spent on life support. This was certainly a very traumatic experience for you both. It sounds like you are now facing an uncertain future because of the liver tumors.

I have personally had three surgeries for NETs and I know of many people who have NETs in the liver.

I would also like to direct you to the Carcinoid Cancer Foundation. Here is the link to their website, https://www.carcinoid.org/.

On that link you will also see treatments available to liver tumors, https://www.carcinoid.org/for-patients/treatment/treatment-options/. As you can see, liver embolization is also a possibility. Are you aware of PRRT treatment for metastasized NETs? It was approved by the FDA last year and has been used to treat this type of tumor.

I certainly encourage you to seek out a NET Specialist. On the carcinoid organization website you can find doctors in your area who are specifically trained to treat NETs. Please seek them out for an initial consultation. A general oncologist is usually not aware of the complexity of NETs treatment.

I wish you and your husband well, as you seek out the best treatment possible. Will you post again?

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@colleenyoung

Hi @carcinoid, You'll notice that I moved your message to the Neuroendocrine Tumors group where discussions are dedicated to NETs. Here you will certainly meet many members who will support you and your husband on this very frightening journey. I'd like to start by introducing you to @hopeful33250 @tresjur @marilyn2525 @gaylejean @ajnaudra and @tomewilson to name a few.

You are not alone.

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Thank you, I did search the list of Cancers but did not find any listed on this subject.

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@hopeful33250

Hello @carcinoid and let me add my welcome to that of Colleens. I am sorry to hear of the extensive surgery your husband had and for the time he spent on life support. This was certainly a very traumatic experience for you both. It sounds like you are now facing an uncertain future because of the liver tumors.

I have personally had three surgeries for NETs and I know of many people who have NETs in the liver.

I would also like to direct you to the Carcinoid Cancer Foundation. Here is the link to their website, https://www.carcinoid.org/.

On that link you will also see treatments available to liver tumors, https://www.carcinoid.org/for-patients/treatment/treatment-options/. As you can see, liver embolization is also a possibility. Are you aware of PRRT treatment for metastasized NETs? It was approved by the FDA last year and has been used to treat this type of tumor.

I certainly encourage you to seek out a NET Specialist. On the carcinoid organization website you can find doctors in your area who are specifically trained to treat NETs. Please seek them out for an initial consultation. A general oncologist is usually not aware of the complexity of NETs treatment.

I wish you and your husband well, as you seek out the best treatment possible. Will you post again?

Jump to this post

Yes, I have been informed about PRRT, our Cancer Center in Allentown, PA is currently working on getting rooms ready for this treatment. Due to the extensive illness he had with 100 days in hospital ; mostly ICU, then rehab in the same building although separate from the hospital itself, he has renal failure at 28% currently. I don't know if he will be a candidate for the PRRT. I also wonder why it was administered in Europe for many years before the AMA approved it for the US, and they have stopped administering it in Europe now? Our Oncologist is not a specialist in NET but is connected with Salone Kettering in NYC and has a special interest in Carcinoid so we feel we are in good hands. We went to a Dr. Metz for a second opinion in Philadelphia and left there feeling like a lab rat. The doctor barely looked at my husband, had his head in the computer all the time we were there asking him questions, like he was ready to use his information for his next publication.

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@carcinoid

Yes, I have been informed about PRRT, our Cancer Center in Allentown, PA is currently working on getting rooms ready for this treatment. Due to the extensive illness he had with 100 days in hospital ; mostly ICU, then rehab in the same building although separate from the hospital itself, he has renal failure at 28% currently. I don't know if he will be a candidate for the PRRT. I also wonder why it was administered in Europe for many years before the AMA approved it for the US, and they have stopped administering it in Europe now? Our Oncologist is not a specialist in NET but is connected with Salone Kettering in NYC and has a special interest in Carcinoid so we feel we are in good hands. We went to a Dr. Metz for a second opinion in Philadelphia and left there feeling like a lab rat. The doctor barely looked at my husband, had his head in the computer all the time we were there asking him questions, like he was ready to use his information for his next publication.

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I do understand, @carcinoid. Your husband's weakend physical condition certainly might preempt him from some of the other treatments that are available. Have you discussed liver embolization with any physician?

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Dear Carcinoid.

From reading the posts it seems that you have done all the things I would do in search for advice, new information and recommendations. Through testing and evaluations a NET specialist would be able to determine if your husband would be a candidate for PRRT. I was diagnosed in 12/08 with NET tumors that had metastasized to my liver. That was 10 years ago and I know that the tumors were there before my diagnosis. After 9+ years of monthly octreotide injections, I had my first PRRT infusion on 11/28/18 and my second one will take place on 1/30, less than 2 weeks from today. That being said, I also have other health issues: heart disease, diabetes, arthritis, g6pd deficiency and a few others. Actually, I'm managing the "other" health issues more so than the NETs. The moderator of our state's Neuroendocrine Cancer Awareness Network has been living with NETs for over 21 years now and if you met, talked or fellowshipped with him you would have no idea that he has been on such a long NET journey. I'm starting year 11 and hope that I see another 11 years. There is hope for us with more awareness, research and treatments available for us dealing with this rare disease.

Do your due diligence in pursuing a good NET specialist. We all are different in some ways and other health concerns can impact the treatments available for us.

Wishing you the best and hope that you locate a NET specialist that is sensitive, willing and able to treat your husband in accordance with his other health issues.

Tresjur

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@colleenyoung

Hi @carcinoid, You'll notice that I moved your message to the Neuroendocrine Tumors group where discussions are dedicated to NETs. Here you will certainly meet many members who will support you and your husband on this very frightening journey. I'd like to start by introducing you to @hopeful33250 @tresjur @marilyn2525 @gaylejean @ajnaudra and @tomewilson to name a few.

You are not alone.

Jump to this post

I am @gaylejean. I have never signed up for any area on Mayo Connect EXCEPT the NET one and I keep getting other stuff

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@tresjur

Dear Carcinoid.

From reading the posts it seems that you have done all the things I would do in search for advice, new information and recommendations. Through testing and evaluations a NET specialist would be able to determine if your husband would be a candidate for PRRT. I was diagnosed in 12/08 with NET tumors that had metastasized to my liver. That was 10 years ago and I know that the tumors were there before my diagnosis. After 9+ years of monthly octreotide injections, I had my first PRRT infusion on 11/28/18 and my second one will take place on 1/30, less than 2 weeks from today. That being said, I also have other health issues: heart disease, diabetes, arthritis, g6pd deficiency and a few others. Actually, I'm managing the "other" health issues more so than the NETs. The moderator of our state's Neuroendocrine Cancer Awareness Network has been living with NETs for over 21 years now and if you met, talked or fellowshipped with him you would have no idea that he has been on such a long NET journey. I'm starting year 11 and hope that I see another 11 years. There is hope for us with more awareness, research and treatments available for us dealing with this rare disease.

Do your due diligence in pursuing a good NET specialist. We all are different in some ways and other health concerns can impact the treatments available for us.

Wishing you the best and hope that you locate a NET specialist that is sensitive, willing and able to treat your husband in accordance with his other health issues.

Tresjur

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I am due to return to Mayo in April for followup and talk of PRRT. Can you tell me what it is like?

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@gaylejean

I am due to return to Mayo in April for followup and talk of PRRT. Can you tell me what it is like?

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Hello Gaylejean,

Rather than write what my PRRT treatment was like, I am sending you a link to an 11 minute video that describes exactly how my treatment day went. If you have further questions after you view the video, please write.

Tresjur

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Thank you for sharing this. I watched it and so did my husband (the patient) It is always best to see what is around the corner and then it is less frightening.

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@tresjur

Hello Gaylejean,

Rather than write what my PRRT treatment was like, I am sending you a link to an 11 minute video that describes exactly how my treatment day went. If you have further questions after you view the video, please write.

Tresjur

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Thanks for providing that video, @tresjur. It was very informative and helpful to those of us who may be involved in this type of treatment in the future. How many treatments are usually done like this?

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@gaylejean

I am @gaylejean. I have never signed up for any area on Mayo Connect EXCEPT the NET one and I keep getting other stuff

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@gaylejean Yes, I also get all cancer types. I don't think they have a way to separate the different cancers. At least it shows on the incoming mail what the subject is so I delete the ones that come in not dealing with NETS. I don't mind because I get informed about the NETS .

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@tresjur

Hello Gaylejean,

Rather than write what my PRRT treatment was like, I am sending you a link to an 11 minute video that describes exactly how my treatment day went. If you have further questions after you view the video, please write.

Tresjur

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thank you – just watched hours of you tube videos on NET. What was your PERSONAL response – nausea, fatigue, recovery?

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@gaylejean – My husband has not had it yet. Our Allentown LVH Cancer Institute is just preparing rooms to begin giving it. On his visit to his Oncologist last week he told him they expect to have it up and ready for April 2019. I like to be prepared ahead of time to what to look for. Not one for surprises anymore; the past 3 years have been full of shocks and surprises and I've had enough now.

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@hopeful33250

Thanks for providing that video, @tresjur. It was very informative and helpful to those of us who may be involved in this type of treatment in the future. How many treatments are usually done like this?

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Teresa, I'm pretty sure all of the treatments are handled this way. Since I will have my second treatment on January 30, I will post to let you know if the second infusion was exactly the same as the first.

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