carcinoid tumors

jurgens · New User Joined: 19 Sep 2007 Posts: 2

My mother was diagnosed with carcinoid tumors last year. She was told that she would probably die from something else before the cancer because of it's slow growth. It has raged. She has finished the "chemo treatment shots" and is still having major problems. She can't keep any food down, is constantly tired and her legs are swelling. She has pretty much given up. Surely there is something else she can try. We will take her anywhere we have to get the right treatment.
We live in Nebraska and her Doctor has sent her info to Mayo. He hasn't treated this kind of cancer before.
Any help would be appreciated! You can contact me either on this board or e-mail me at
jurgens@gtmc.net

Thank You

brainman · Posted: Wed Sep 19, 2007 10:20 pm Post subject: Re: carcinoid tumors

Jurgens, I am so sorry about your mother's carcinoid tumors and that the doctor was wrong with his first assessment of it being slow growing. I do not know much about carcinoid tumors except that they usually are slow growing. The medical staff at the Mayo Clinic are among the best in the world. I hope they have some good news for you. Keep us informed.

Do you know what chemotherapy she has received? Where was it located? In her gastric system (stomach or intestines)?

You and your mother are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Muttsmom · Posted: Wed Sep 19, 2007 11:35 pm Post subject: Re: carcinoid tumors

I had never heard of those kind of tumors until I did a search. It says most are at least 60 because the tumors are so slow growing and they can be either in the lung or gastro tract. I'm not familiar with a chemo "shot", but of course there are so many kinds out there for different kinds of cancer. The article did say that it was a rare cancer and I'm sure her onco gave the best prognosis based on what is known about the cancer.

You and your mom are in my prayers.
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

jurgens · New User Joined: 19 Sep 2007 Posts: 2

Brainman--her tumors are in the gastric system. The shot she takes is one that she gives herself in the leg muscle. It's not anything that hurts her, very small needle. She was taking them 3 times a week.
She was told before the shot treatments that there was an experimental treatment she could try at 3 sites, Houston, Denver and Lafayette, Arkansas. Not sure what that would consist of. Of course the shots were recomended first since she would be able to stay home and take them.
Do you or anyone else know where she or we could contact people who have had this specific type of cancer. We are pretty new to the game and really don't know where to turn.
Thank You

brainman · Posted: Fri Sep 21, 2007 1:35 am Post subject: Re: carcinoid tumors

To start with your ending question first, no, I do not know how you would contact anyone ease who has this particular tumor. However, if you hang around here, someone might know.

I worked at a medium sized hospital for 15 years. Although we were not large enough to have research projects of our own, we did participate in studies being do by MD Anderson (Houston). Maybe there is a hospital near you that does the same things. Mostly these were trials of treatments that had already been very well documented in terms of their safety and we were just part of the effectiveness studies.

Best wishes.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

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