Anyone having severe dizziness or lightheadedness with NETS

Posted by jwlevandowski @jwlevandowski, Jan 16 4:25pm

I have had severe dizziness and lightheadedness with my G2 ileum NET. My symptoms have been so severe I am unable to do any activity. I feel it while sitting or standing. Nothing seems to help. I don't have my surgery for a month, so I am trying to hold on until then. Just asking around if you have had a similar experience and if you might have any advice.

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

eei | @eei | Jan 17 11:13am

I hope you have informed your oncologist and surgeon of your symptoms. They are the specialists and they will help you.

jwlevandowski | @jwlevandowski | Jan 17 1:09pm

Yes, I had my appointment with my Mayo Surgeon last week and she ordered some blood tests.

Turkey, Volunteer Mentor | @tomrennie | Jan 22 10:05am

In reply to @jwlevandowski "Yes, I had my appointment with my Mayo Surgeon last week and she ordered some blood..." + (show)

@jwlevandowski Did you get the results of the blood tests?

ricki8 | @ricki8 | Jan 25 10:20am

I found that the treatments and meds I'm on can create all sorts of new reactions (including dizzyness). I call it 'symptom of the week' It often goes away when my body adjusts or when I switch meds. Consult your oncologist team. Good luck!

iverwig | @iverwig | Jan 26 7:41am

I have had the dizziness and have experienced being lightheaded post surgery. I had a reoccurrence of NET for the past couple years and the doctors seem to think it’s a result of my body adjusting from the surgery and it may be a new norm for me. The dizziness had gotten better as I learned not to do certain things like bend over or lift heavy objects but now it seems to be increasing. I have a phone appointment with my oncologist today and plan to let him know my symptoms are starting to increase.

Turkey, Volunteer Mentor | @tomrennie | Jan 26 10:24am

In reply to @iverwig "I have had the dizziness and have experienced being lightheaded post surgery. I had a reoccurrence..." + (show)

@iverwig Please let us know how your appointment goes today? Thanks.

iverwig | @iverwig | Jan 26 6:31pm

In reply to @tomrennie "@iverwig Please let us know how your appointment goes today? Thanks." + (show)

@tomrennie my Oncologist went over my most recent PET scan with me. The nodes are still the same size and have not grown. There are two new nodes in my neck area. I will be scheduled for a CT scan as well as a pulmonary function test. The PFT is to see where I am at as I developed severe restrictive lung disease from my surgery in 2023. I will continue with the Everolimus.

Turkey, Volunteer Mentor | @tomrennie | Jan 27 10:27am

In reply to @iverwig "@tomrennie my Oncologist went over my most recent PET scan with me. The nodes are still..." + (show)

@iverwig What kind of surgery did you have in 2023? At least the existing nodes have not grown, but the new nodes have to be a bit concerning. When was the PET scan, and when approximately will the next CT scan be?

iverwig | @iverwig | Jan 27 3:33pm

In reply to @tomrennie "@iverwig What kind of surgery did you have in 2023? At least the existing nodes have..." + (show)

@tomrennie the PET was two weeks ago. The surgery was a 9 hour procedure for the NET cancer which was located in my thymus. A lot of things were operated on due to the location of the mass to the point my entire anatomy has been changed.

I am waiting for the hospital to call to schedule the CT but I do know the order was placed by my Oncologist.

I’m not concerned about the tumors. I remain positive and am thankful to God I can still function and get around. I could have and probably should have been gone from the surgery but the Lord said not yet so I’m grateful to still be around and to continue to be able to live life as normal as possible.

michellehcapouch | @michellehcapouch | Jan 28 12:24am

In reply to @iverwig "I have had the dizziness and have experienced being lightheaded post surgery. I had a reoccurrence..." + (show)

@iverwig I had quite a bit of dizziness lightheadedness. I’m sure a few factors were cause lanreotide gave me diabeties now on januvia and stopped eating candy cakes pop sugary junk. I had severe fatigue and was not getting excersize movement bloodflow getting better since two Parathroids were removed. Fatigue went away and I have been doing PT also lost 60 pounds. Everything seemed to help dizzy spells.