Hello all-

Hope this finds everyone getting along okay. It's been a while since I have been on here trying to keep up with all this medical myself.

I have two questions.....

Does anyone else get severe upper back pain with eating? When I first starting getting sick, it started in the upper abdomen, about six months ago the pain started radiating to my mid-upper back on the left - and now it's every time I eat its severe moves across the shoulders- like the shoulder blades along with all the other carcinoid syndrome symptoms.

Interestingly it seems like things really took a turn with this upper back pain after I had a angio-gram to look at my celiac artery- but it might just be coincidental. All I can say is it's horrible. I know it's not my gallbaldder as I don't have one.

I'm finally getting ready to travel to Iowa in another month to get a Gallium 68 Scan since we still can't seem to locate the tumors.

My second question is - does anyone also have problems with the their pituitary no longer responding and thus they are IGF 1 deficient along with their cancer. My deficency started prior to us thinking I had cancer. Then after 8 months on it I got deathly sick and they realized I had to have a malignant neoplasm somewhere so we stopped the GH. We've been looking for the cancer ever since for three years now, thought they saw it in my Illium but now not sure. This last year as I have been getting sicker it has continued decline more and as of last week my testing came back that the Pituitary is not stimulating at all. I find it ironic that the severe decline started happening around the the back pain started increasing. I know that some tumors are GH receptive. I'm have not been on Octreotide for some time - too complicated to explain but are going to go back on it. But they are worried about my IGF1 as that can impact it too.

My docs have been great, but I like many of you, have been around the block with this with multiple docs, and facility's, so I do hope Iowa will have the MAGIC answers!! :-)

Thanks for the help and be gentle with yourselves..
Mary

Hello Sprout

I've had one of my adrenal glands removed and I read somewhere that this can lead to a lot of discomfort in the neck and shoulders area. So it might be linked to a neuroendocrine deficiency of some sort.

Can't comment on your second question though - well off my research radar.

Best wishes

Hi Tim- thanks for the reply, I appreciate it. I'm thinking it must be as well. Research radar- I like that, we do become quite the research folks don't we.

Have a wonderful day~
Mary