Stage 4, High-Grade Neuroendocrine carcinoma

could you please share the facebook group??
thanx
Sheri

Oh yes I have questions??

If there are some that you know to ask I would like to know??

Add me on fb. Jennifer stubbs. I’ll get you in touch or if your comfortable the women’s name to allow you into the group is Susan meckler Plummer. She is an advocate for the high grade. There’s also several groups if you type neuroendocrine into the bar. (Dr. Eric liu is a favorite specialist. There’s a link to her account.
https://www.facebook.com/kittkat914?mibextid=LQQJ4d

Could you please name this face book group so we may join it?
Thank you

Should be a screen shot

Hi @kim2022

I see this post is from November of last year. Hope all is going well for you and your family. From reading below I can tell you the PET scan will identify all the hotspots for your NETs. And there are a couple of different PET scans available.
Just know the gold standard for treatment is to have the cancer surgically removed. The chemotherapy will help shrink any tumors (once found) but they will continue to grow back and eventually metastasize to different parts of your body.

I was diagnosed with stage 3 inoperable lung NETs that had metastasized to my lymph nodes. I and now waiting my post PET scan from the radiation / chemotherapy treatments. My body has been going through some changes and it has its challenges.

I think I’m in a good place and getting the best treatment available. I have been assigned a palliative care team to help ease the burden of my journey. My best advice would be to treat your food like medicine, make lots of notes to ask your doctors, and try to live the best life you can.

Everything they will give you will have side affects. And they will treat the side affects accordingly. Get comfortable, trust the doctors, and do your best to enjoy your “new normal”.

NETs is typically a slow growth cancer however it can also accelerate and become a fast growing disease. My mind set is learn all I can to be my best advocate for the treatments. And don’t forget to that a cancer brake from all of this and enjoy the sites and sounds around you.

You will be in my prayers
CEB

Hi @ce1b

This journey has been tougher than I initially thought it would be. The team of doctors at RMCC are fantastic. The cancer cannot be removed with surgery as it is in my entire lymph system. They thought chemo would be my best chance to knock the cancer back. I have done five rounds of chemo and after the first round got severe nephropathy. I thank God for the palliative care team I have as they have been able to help me manage the pain in spite of all my allergies to pain medications.

After round 4 of chemo the doctor was given permission by insurance to do a PET scan. They found the cancer has spread to my thorax, thyroid, and abdomen. It remains very active in my super-clavicle, pelvis, and the entire left side of my lymph system. I was referred to ENT for thyroid. They did ultrasound and found 4 nodes, 3 of which have extremely high likelihood of being cancer. They are not sure they want to do a biopsy or just remove them. I will find that out on Monday the 13th. My last chemo round is next week also. Since this is high grade, small cell NET they are grasping at straws as to where we go from here.

The team at RMCC is suggesting something they have said is a crazy idea as my type of NET is not typically eligible for radiation. They want to do radiation on all the hot spots remaining after final chemo. I have an appt with radiation oncologist on the 22nd but they have not agreed to anything yet. Nor do we know if the insurance will cover any of it. They haven't been real cooperative with approving basic tests or treatments the doctors want to do.

I have the greatest family support team. I have two grown sons and a husband who do everything they can to make my life easier when I need it, while understanding I don't need everything done for me. We have enjoyed the time we have when I am recovering from chemo. We do small things but they mean everything to me. My brothers and parents are also extremely supportive from a distance. My diet has become extremely important as it helps me to maintain the healthiest lifestyle I can while going through this all. I have also learned way more than I ever wanted to know about the function of the human body. 🙂

I thank God everyday that I have been blessed with such a great support system. Thank you for reaching out.

Kimberly