← Return to Typical Carcinoid Tumor in Lungs

Discussion

Typical Carcinoid Tumor in Lungs

Neuroendocrine Tumors (NETs) | Last Active: 6 days ago | Replies (34)
Comment receiving replies
@cmc188

Hi, I've been told I have a few lung carcinoma tumours and so many nodules too many to count. The cancer specialist said Chemo would be useless for me and I may be able to take this injection in the thigh once a month which may slow it down. It seems this type I have is slow. I had one tumor in my left lung for 20 years which didn't move but now it's in the right growing. So many side effects with this medication and I already have AF with side effects from the meds which make it harder to breathe so I have declined. As well as asthma. I have come across Blushwood Berry tincture which has been found to help a lot of other types of cancer. I was going to use it in a nebuliser but unsure if it's ok. Has anyone heard or used it before?

Jump to this post

Replies to "Hi, I've been told I have a few lung carcinoma tumours and so many nodules too..."
Teresa, Volunteer Mentor | @hopeful33250 | 6 days ago

Hello @cmc188 and welcome to Connect. I would like to introduce you to @californiazebra and @triveraderubio, who have also dealt with many lung NETs.

I would heartily recommend that you get a second opinion with a NET specialist. A consultation with a NET specialist might provide you with more options for dealing with the current tumors as well as the shortness of breath. Here is a list of NET specialists, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.

I know nothing about the tincture that you mentioned. I would hesitate to use it unless you get the approval of your oncologist.

Besides the shortness of breath, what other symptoms are most bothersome for you?

VIEW AND REPLY
Zebra | @californiazebra | 6 days ago

Hi @cmc188
I have 50+ lung NETs tumors across both lungs. I also have DIPNECH (really rare) which causes so many tumors. Mine are very slow growing but I had a chronic cough, mucous and shortness of breath for 30 years. The tumors were discovered on my first CT 16 years ago but not diagnosed until 2020. I’ve been taking monthly octreotide for 4 years now and it has changed my life with an incredible improvement in respiratory symptoms. It has even helped some of my respiratory allergies and sensitivities. It took a few months to get there though. I have side effects but the trade off is so worth it.

I had my largest tumor (2.6 cm) destroyed with microwave ablation almost 4 years ago. I have regular CT scans to monitor the growth of others.

I agree with Teresa that you need a NETs specialist. Most other oncologists or thoracic specialists know little about NETs and it’s not treated like other lung cancers. You may have DIPNECH too given your innumerable nodules. Mine took too long to diagnose because my medical team was unfamiliar with DIPNECH and NETs. A NETs team will likely want to do a DOTATATE PET scan specifically designed to see any other possible NETs in your body.

I noticed your British/Canadian spelling of tumors and nebulizer. Are you in the US or have access to the NETs specialists that Teresa supplied?

I don’t know anything about Blushwood Berry. Proceed with caution because people can make a lot of claims about natural cures without having to prove anything.

Please let me know if you have any specific questions. Best of luck.

VIEW AND REPLY