Carcinoid Cancer and working

Posted by audra @ajnaudra, Feb 13, 2018

Hi my name is Audra and I was diagnosed with Carcinoid Cancer in 2016. I drove myself to the ER with severe pain and had an immediate CT scan which showed a large mass in my small intestine. Two weeks later over a foot of bowel, part of the colon, and left ovary removed along with lymph nodes and tissue. Three months later I needed a colonoscopy then three months after that a full hysterectomy. CT scans and MRI’s prove I still have tumors in tissue and tiny “spots” in my liver too small to grade as tumors at this time. I am on Sandostatin every 28 days and seem to tolerate it well. My booty hurts for about 2 weeks but is tolerable. I am usually tired for a couple of days and do suffer from extreme diarrhea on and off. I live on the tip of the thumb in Michigan and don’t know anyone to speak with regarding this cancer. I applied for SS benefits and was turned down, not eligible, not old enough, not enough work credit, blah blah blah. The only other thing I can think of is to go back to work to help with our finacial situation before we have to file bankruptcy (which I do not want to do). I also suffer from Fibromyalgia and have not worked outside the home for about 7 years. Any insite would be appreciated!

@mollie59

Hello, I too was diagnosed with Carcinoid Center in May of 2017. Mine is located in the liver. I am able to get my sandostatin injections at my hometown hospital. I was given a tube of lidocaine lotion to apply to my injection sites 30-60 min before, I live close so can apply it at home, however, I’m sure they could apply it for you. This made a 100% difference for me! I no longer had the pain or the sore hips for the day following. It is worth a try. Good luck to you.

Jump to this post

I am so happy to hear it worked out for you. My local nurse told me there was no sense in having the pain. Continued prayers to you…..

REPLY
@carcinoid

Seek help from a Carcinoid Specialist. It is now referred to as NETS (Neuroendocrine Cancer) Call the Carcinoid Foundation for help finding one closest to you. There are not many Specialists-but you will benefit by traveling to see one. A new drug has recently (end of January 2018)been approved. Don't delay-appointments are not fast.

Jump to this post

Teresa and @carcinoid, Dr Anthony told me the 24-hr urine test was not helpful for rectal carcinoid. However, I did have one 3 years ago because my internist said if it had somehow metastacized to lungs or liver, for instance, it would come back positive. I have been told by a local support group widow that a NETS specialist has moved to Dallas from another state. I think to UTSW, which is now a top-ranked cancer hospital, same as MD Anderson. I need to seek him out, I guess. Thank you.

REPLY
@carcinoid

Seek help from a Carcinoid Specialist. It is now referred to as NETS (Neuroendocrine Cancer) Call the Carcinoid Foundation for help finding one closest to you. There are not many Specialists-but you will benefit by traveling to see one. A new drug has recently (end of January 2018)been approved. Don't delay-appointments are not fast.

Jump to this post

That sounds great. Don't delay. There s a new scan called Gallium 68 and just the end of January a new drug called PRRT was just approved for use in the U.S. I wish you the very best and get to see that Specialist ASAP.

REPLY
@carcinoid

Seek help from a Carcinoid Specialist. It is now referred to as NETS (Neuroendocrine Cancer) Call the Carcinoid Foundation for help finding one closest to you. There are not many Specialists-but you will benefit by traveling to see one. A new drug has recently (end of January 2018)been approved. Don't delay-appointments are not fast.

Jump to this post

@mgreene

That is good that the 24 hour urine was negative. Do you have the blood serotonin levels checked periodically or is that something that is not used for the rectal carcinoids?

Teresa

REPLY

Hello @ajnaudra

It has been a while since you first posted about your NET surgery and treatment and I've been thinking about you. I hope that you are adjusting to this diagnosis and learning more about it. Did you contact Dave Vickery for some more information about the support group?

I hope you are feeling better. I would love to hear from you when you have an opportunity to post.

Teresa

REPLY
@hopeful33250

Hello @ajnaudra

It has been a while since you first posted about your NET surgery and treatment and I've been thinking about you. I hope that you are adjusting to this diagnosis and learning more about it. Did you contact Dave Vickery for some more information about the support group?

I hope you are feeling better. I would love to hear from you when you have an opportunity to post.

Teresa

Jump to this post

Hello,
I have been suffering from terrible vertigo. No understanding why but we think it is from lack of sleep at times which is mostly caused from pain due to fibromyalgia.
I did speak with Dave and received information about the support group, unfortunately it is quite a distance from me. He did give me great info though and was great to talk with someone who has loafs of info and many years of experience.
I would also like to share some wonderful news…. a recent CT scan showed some miraculous results! There were 5 tumors in my live and by divine mercy, there are 2 left!!!! My Oncologist is very happy as well. She said she would like to credit the Sandostatin but cannot say that’s what it was. So for now, I feel it is all the wonderful prayers said on my behalf!
Warm regards to all,
Audra

REPLY

@ajnaudra Hello Audra,

I'm so glad to hear your good news from the recent CT! I am also glad to hear that you made contact with Dave. He is a great guy to talk with. He has walked down the NET road for many years with all of it's bumps and ruts and yet he does well.

I appreciate the update and I look forward to hearing from you again.

Teresa

REPLY

Hello @ajnaudra

I hope that you are continuing to do well. You have probably received an email from Dave Vickery of the Michigan NET support group regarding the September meeting on this part of the state. I hope to see you there.

I would enjoy hearing from you again. Is your fibromyalgia pain under better control now?

Teresa

REPLY
Please sign in or register to post a reply.