1. < Neuroendocrine Tumors (NETs)
Mentor

Welcome to the NETs Group! Come say hi.

Posted by Teresa, Volunteer Mentor @hopeful33250, Jan 20, 2017

Hello and welcome
Let's pull up our chairs in a circle and check in with each other and talk about how we are doing with our NET diagnosis. Any new tests, meds or treatments going on for you? What about your symptom control? Any concerns you have?

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

Zebra | @californiazebra | Nov 24 4:41pm
In reply to @splendrous "Thanks for sharing. You certainly have had quite a journey. I hope the treatment can help..." + (show)
@splendrous

Thanks for sharing. You certainly have had quite a journey. I hope the treatment can help your symptoms. Where is the doctor directing your care?

Jump to this post

UCLA NETs team is coordinating with my local breast oncologist. Works great so I can get the octreotide injections locally.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 24 4:44pm
In reply to @californiazebra "Hi @splendrous 2008-2010: they didn't know what the 50+ nodules were, benign or cancer, so many..." + (show)
@californiazebra

Hi @splendrous
2008-2010: they didn't know what the 50+ nodules were, benign or cancer, so many guesses, all wrong. I declined an open chest/lung biopsy. We monitored with CTs for 2 years, slow growing.
2012: My second pulmonologist who was 73, said he'd never seen so many. I declined more CTs due to radiation. My logic was either it's benign or I'd be gone already if lung mets as some suspected. My new doc agreed.
2013: I now had unrelated breast cancer and the CT/PET showed they had grown. I still declined a lung biopsy.
2020: My unrelated breast cancer returned in my chest wall and the lung tumors had at least doubled in size so large enough to do a needle biopsy. I agreed and was diagnosed with stage 1 lung NETs (typical carcinoids) and advanced DIPNECH. My lungs are peppered with tumors so we can't remove them all.

I have been taking the monthly octreotide injections for 3.5 years now. It appears to be slowing growth in addition to relieving symptoms, but slow growing anyway. The interventional radiologist is watching for one to take off from the pack or behave differently in some way. So far, he destroyed the largest one 2.6 cm with microwave ablation and expects we'll do more in the future. He told me my airways are lined with hundreds or thousands of tiny tumorlets that don't show up on the CT and those cause the symptoms. Those are the ones I especially don't want to grow at all as I'm rather fond of breathing. I'm happy with my treatment.

P.S. Something new is happening in the bottom of my right lung. Looks like new tumors, but could be "debris" because a couple old tumors are blocking air flow there. Unclear so we'll do another CT in 3 months instead of 6. I'll know more at the end of January. This is the problem with 50+ tumors getting larger - even slowly. I also worry that breast cancer may spread to my lungs. That wouldn't be good. Only a biopsy could tell. Busy lungs with a lot to sort out. I'm doing amazingly well despite all of this. I hope to report the same in February. 🙂

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Hello @californiazebra,

I really appreciate the chronology that you provided as you have been dealing with lung NETs/DIPNECH for such a long time. It really provides a perspective for @splendrous and others to see the path that this type of cancer can take. You've been quite diligent in your care and follow up and being a great advocate for your own care.

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rachismarie | @rachismarie | Nov 28 9:17pm

I was recently diagnosed with (1) early stage lung cancer, (2) emphysema (3) DIPNECH with tumorlets and chemdectomas. I had partial lung resection biopsy and a 7" cancerous tumor was removed, with clear margins and no node involvement. I'm being treated at Moffitt Cancer in Tampa, FL.

I'm now in the stage of getting medical opinions on treatment going forward. So far, the recommended treatment is observation, worth scans every 3-6 months for the next 5 years. I'm skeptical, frustrated and frightened.

I'm 55 and this is my 2nd cancer. I had invasive breast cancer at 43. I've had bilateral mastectomy and radical hysterectomy, followed by hormonal treatment with oral chemo drugs. I took Tamoxifen for 5 years. Come to find out now that Tamoxifen is a known carcinogen.

I'm frustrated with the lack of treatment options that DIPNECH has, after having one cancerous nodule removed and it being a second primary cancer for me. Does anyone have any thoughts or experiences around any of this? I feel so overwhelmed, isolated and worried.

REPLY
2 replies
sophiarose | @sophiarose | Nov 29 7:05am

Reaching to to anyone taking Ocreotide
In October I finished my 4th and last PRRT treatment with Ocreotide directly afterwards
November I started my every 28 day treatment of Ocreotide
I am having major issues with my blood pressure and pulse elevating
When it happens I can’t walk straight I feel like I will fall to the side and I have fallen
My cardiologist has put me on Nebivolol which takes a few hours to work but it dose
However now my blood pressure is barely 100/50 and I am afraid of taking Nebivolol
My cardiologist believes it is from the Ocreotide my oncologist says it is from my carcinoid syndrome and I need to take the Ocreotide
Has anyone had this issue
Please let me know
I hope everyone has had a Happy Thanksgiving

REPLY
3 replies
vinnie694 | @vinnie694 | Nov 29 8:16am
In reply to @sophiarose "Reaching to to anyone taking Ocreotide In October I finished my 4th and last PRRT treatment..." + (show)
@sophiarose

Reaching to to anyone taking Ocreotide
In October I finished my 4th and last PRRT treatment with Ocreotide directly afterwards
November I started my every 28 day treatment of Ocreotide
I am having major issues with my blood pressure and pulse elevating
When it happens I can’t walk straight I feel like I will fall to the side and I have fallen
My cardiologist has put me on Nebivolol which takes a few hours to work but it dose
However now my blood pressure is barely 100/50 and I am afraid of taking Nebivolol
My cardiologist believes it is from the Ocreotide my oncologist says it is from my carcinoid syndrome and I need to take the Ocreotide
Has anyone had this issue
Please let me know
I hope everyone has had a Happy Thanksgiving

Jump to this post

Sophiarose Hope your thanksgiving was good. I’ve been on Ocreotide for 18 months, it does control my carcinoid syndrome. I haven’t experienced what you described. I have a respiratory reaction when I receive the shots. Were you on Ocreotide prior to the PRRT Treatments, or has this started since the treatments.. I have my first PRRT treatment Thursday, with my ocreotide shots to follow, I’ll let you know if I experience the same.. It is a crazy journey…

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 29 9:15am
In reply to @sophiarose "Reaching to to anyone taking Ocreotide In October I finished my 4th and last PRRT treatment..." + (show)
@sophiarose

Reaching to to anyone taking Ocreotide
In October I finished my 4th and last PRRT treatment with Ocreotide directly afterwards
November I started my every 28 day treatment of Ocreotide
I am having major issues with my blood pressure and pulse elevating
When it happens I can’t walk straight I feel like I will fall to the side and I have fallen
My cardiologist has put me on Nebivolol which takes a few hours to work but it dose
However now my blood pressure is barely 100/50 and I am afraid of taking Nebivolol
My cardiologist believes it is from the Ocreotide my oncologist says it is from my carcinoid syndrome and I need to take the Ocreotide
Has anyone had this issue
Please let me know
I hope everyone has had a Happy Thanksgiving

Jump to this post

Hi @sophiarose

I'm sorry to hear about your blood pressure/heart rate problems after the injection. It makes it more difficult when the specialists don't agree on the cause.

Have you considered changing the time of day when you take the Nebivolol? I see that this is classified as a beta blocker. You might talk with your cardiologist and ask if you can take it at night and see if that reduces the symptoms during the day when you are up and about.

Will you post again and let me know how you are doing?

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 29 9:24am
In reply to @rachismarie "I was recently diagnosed with (1) early stage lung cancer, (2) emphysema (3) DIPNECH with tumorlets..." + (show)
@rachismarie

I was recently diagnosed with (1) early stage lung cancer, (2) emphysema (3) DIPNECH with tumorlets and chemdectomas. I had partial lung resection biopsy and a 7" cancerous tumor was removed, with clear margins and no node involvement. I'm being treated at Moffitt Cancer in Tampa, FL.

I'm now in the stage of getting medical opinions on treatment going forward. So far, the recommended treatment is observation, worth scans every 3-6 months for the next 5 years. I'm skeptical, frustrated and frightened.

I'm 55 and this is my 2nd cancer. I had invasive breast cancer at 43. I've had bilateral mastectomy and radical hysterectomy, followed by hormonal treatment with oral chemo drugs. I took Tamoxifen for 5 years. Come to find out now that Tamoxifen is a known carcinogen.

I'm frustrated with the lack of treatment options that DIPNECH has, after having one cancerous nodule removed and it being a second primary cancer for me. Does anyone have any thoughts or experiences around any of this? I feel so overwhelmed, isolated and worried.

Jump to this post

Hello @rachismarie,

I'm glad that you found Mayo Connect. We have a number of members who have dealt with DIPNECH and tumorlets. When you have a rare disorder, it is good to connect with others who have had a similar experience.
Here are links to those discussions:

--Dipnech on lungs - does anyone have
https://connect.mayoclinic.org/discussion/carcinoid-dyptik-on-lungs-neuroendocrine-does-anyone-have/
--Carcinoid tumorlets neuroendocrine tumor cell hyperplasia dipnech
https://connect.mayoclinic.org/discussion/carcinoid-tumorlets-neuroendocrine-tumorcell-hyperplasia-dipnech/
In these discussions you will meet members like @californiazebra @hollywood817 and others who will be able to share their experiences with you.

As this is your first post, please share what symptoms led to this diagnosis. Were you having a chronic cough or shortness of breath?

REPLY
sophiarose | @sophiarose | Nov 29 12:48pm
In reply to @hopeful33250 "Hi @sophiarose I'm sorry to hear about your blood pressure/heart rate problems after the injection. It..." + (show)
@hopeful33250

Hi @sophiarose

I'm sorry to hear about your blood pressure/heart rate problems after the injection. It makes it more difficult when the specialists don't agree on the cause.

Have you considered changing the time of day when you take the Nebivolol? I see that this is classified as a beta blocker. You might talk with your cardiologist and ask if you can take it at night and see if that reduces the symptoms during the day when you are up and about.

Will you post again and let me know how you are doing?

Jump to this post

Thank you for responding
I have tried switching times
Right now till I can get an answer I am only taking the Nebivolol when my pressure goes up lay down till it goes down because if I take it daily my pressures goes down to 90/50 and I won’t take it
Yes I will post when I get an answer
Again
Thank you

REPLY
Zebra | @californiazebra | Nov 29 1:11pm
In reply to @sophiarose "Reaching to to anyone taking Ocreotide In October I finished my 4th and last PRRT treatment..." + (show)
@sophiarose

Reaching to to anyone taking Ocreotide
In October I finished my 4th and last PRRT treatment with Ocreotide directly afterwards
November I started my every 28 day treatment of Ocreotide
I am having major issues with my blood pressure and pulse elevating
When it happens I can’t walk straight I feel like I will fall to the side and I have fallen
My cardiologist has put me on Nebivolol which takes a few hours to work but it dose
However now my blood pressure is barely 100/50 and I am afraid of taking Nebivolol
My cardiologist believes it is from the Ocreotide my oncologist says it is from my carcinoid syndrome and I need to take the Ocreotide
Has anyone had this issue
Please let me know
I hope everyone has had a Happy Thanksgiving

Jump to this post

@sophiarose
I’ve been taking octreotide injections for lung NETs and DIPNECH for 3.5 years and it lowered my BP and heart rate. I had to reduce my atenolol (per my cardiologist) to almost nothing because my heart rate was in the 40s — scary since it had always been high. BP was too low so I felt faint when standing up. I’d go off atenolol altogether but it helps the muscle cramps and fasciculations from my rare neuropathy. My cardiologist told me he wants my BP at a minimum of 100/60 or my brain and organs are not getting sufficient oxygen. I’m not suggesting you change anything without doctor approval. Just sharing my experience. Octreotide has really controlled my respiratory symptoms so I stay on it. I hope things improve for you.

REPLY
Zebra | @californiazebra | Nov 29 1:22pm
In reply to @rachismarie "I was recently diagnosed with (1) early stage lung cancer, (2) emphysema (3) DIPNECH with tumorlets..." + (show)
@rachismarie

I was recently diagnosed with (1) early stage lung cancer, (2) emphysema (3) DIPNECH with tumorlets and chemdectomas. I had partial lung resection biopsy and a 7" cancerous tumor was removed, with clear margins and no node involvement. I'm being treated at Moffitt Cancer in Tampa, FL.

I'm now in the stage of getting medical opinions on treatment going forward. So far, the recommended treatment is observation, worth scans every 3-6 months for the next 5 years. I'm skeptical, frustrated and frightened.

I'm 55 and this is my 2nd cancer. I had invasive breast cancer at 43. I've had bilateral mastectomy and radical hysterectomy, followed by hormonal treatment with oral chemo drugs. I took Tamoxifen for 5 years. Come to find out now that Tamoxifen is a known carcinogen.

I'm frustrated with the lack of treatment options that DIPNECH has, after having one cancerous nodule removed and it being a second primary cancer for me. Does anyone have any thoughts or experiences around any of this? I feel so overwhelmed, isolated and worried.

Jump to this post

@rachismarie
Sorry to hear about all you’re going thru. I understand how scary it can all be. What type of lung cancer do you have? DIPNECH can lead to lung NETs (neuroendocrine cancer) so is that what you have? I have lung NETs (typical carcinoids), breast cancer and DIPNECH. My DIPNECH is treated with monthly octreotide injections for 3.5 years now. Octreotide eliminated my 30 year long chronic cough, constant mucous and helped shortness of breath when walking. Felt like a miracle! It also can slow tumor growth. Mine were already growing do slowly it’s hard to tell about that. My story is all over the DIPNECH threads. Once you read through them, let me know if you have any specific questions for me. Prayers for you.

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