GIST and Neuroendocrine Carcinoid

ceejay1225

Hello!

I found out yesterday that I have a GIST (gastro intestinal stromal tumor) attached to my stomach and a neuroendocrine carcinoid on my duodenum, Both are very rare types of cancer and my doctor said it is “very unique” to have both of them. It took awhile to get the final diagnosis (my doctors got a second opinion from the Mayo Clinic).

I have to have another scan in Nuclear Medicine--I can’t remember the name of it. And I have to see a surgeon who specializes in cancer surgery. I will be making the appointments today.

The one on my duodenum is infamous for metastasizing to other parts of the body and this scan will show whether or not it has spread. Two lymph nodes close to my aorta are slightly enlarged.

Anyone else here dealing with either of these cancers?

mr steve

Islet cell
CeeJay,

My wife has been in treatment since march of 2008. Islet cell is a type of neuroendricrine cancer. You might be haveing a octreatide (sp)scan looking for hot spots (areas of cancer growth) Her cancer had already mets to several spots when we discovered the cancer to start with. There are several trials under way for this type cancer Just make sure you find an onc that treats this type cancer.

Good Luck with your scan.
Steve

ceejay1225

mr steve said:

Islet cell
CeeJay,

My wife has been in treatment since march of 2008. Islet cell is a type of neuroendricrine cancer. You might be haveing a octreatide (sp)scan looking for hot spots (areas of cancer growth) Her cancer had already mets to several spots when we discovered the cancer to start with. There are several trials under way for this type cancer Just make sure you find an onc that treats this type cancer.

Good Luck with your scan.
Steve

Scan
Steve,
Thanks for your response. The scan (I've since learned) is called an octreoscan and they do it over a 2-3 day period, looking for hot spots. My husband is retired military so I'm getting very good care (the best, actually). They are sending me off-base to some kind of oncology/surgeon/specialist. I go to him on the 15th.
I hope you and your wife are doing well.
CJ

mr steve

ceejay1225 said:

Scan
Steve,
Thanks for your response. The scan (I've since learned) is called an octreoscan and they do it over a 2-3 day period, looking for hot spots. My husband is retired military so I'm getting very good care (the best, actually). They are sending me off-base to some kind of oncology/surgeon/specialist. I go to him on the 15th.
I hope you and your wife are doing well.
CJ

scan
CJ,

You will also have to stay on a bland diet I think, its been awhile since Rhonda had hers. I wish you good news nad hope to hear from you often.

Steve

ceejay1225

mr steve said:

scan
CJ,

You will also have to stay on a bland diet I think, its been awhile since Rhonda had hers. I wish you good news nad hope to hear from you often.

Steve

Diet
Hi, Steve!
There are some foods I can't have before my blood tests Monday, but they didn't say anything about diet for the octreoscan.
How is your wife now?
Thank you,
Carol

mr steve

ceejay1225 said:

Diet
Hi, Steve!
There are some foods I can't have before my blood tests Monday, but they didn't say anything about diet for the octreoscan.
How is your wife now?
Thank you,
Carol

Diet
Carol,

It was a year or so ago when Rhonda had hers. She is doing ok now she's getting avastin every 2 weeks sandostatin LAR every month and taking afinitor daily.

Steve

ceejay1225

mr steve said:

Diet
Carol,

It was a year or so ago when Rhonda had hers. She is doing ok now she's getting avastin every 2 weeks sandostatin LAR every month and taking afinitor daily.

Steve

That's great!
I'm so glad to hear that! =]
Thank you!

ceejay1225

Good News!
The neuroendocrine carcinoid is so small it didn't show up on the octreoscan (has to be half inch) and it has not metastasized anywhere! The scan showed no abnormal activity! Something will have to be done with it, of course. I imagine when I have surgery for the GIST they will just take it out then. I still need to find out if the GIST has metastasized, but right now I'm just going to enjoy this good news! =]

mr steve

ceejay1225 said:

Good News!
The neuroendocrine carcinoid is so small it didn't show up on the octreoscan (has to be half inch) and it has not metastasized anywhere! The scan showed no abnormal activity! Something will have to be done with it, of course. I imagine when I have surgery for the GIST they will just take it out then. I still need to find out if the GIST has metastasized, but right now I'm just going to enjoy this good news! =]

good new indeed
That is great news!!!! I hope all your news is good.

ceejay1225

mr steve said:

good new indeed
That is great news!!!! I hope all your news is good.

Thank you! =]

Thank you! =]

jrahlf

also recently diagnosed with metastatic GIST
I have just recently been diagnosed with advanced metastatic GIST. I am only 37 years old and having a hard time dealing with this. Any suggestions from anyone on how to learn to cope with this? I am driving myself crazy with worry. I am currently taking Gleevec 400mg everyday as they have said the tumors need to shrink before surgery is an option. I am going to be seeking a second opinion. Any suggestions from anyone on how to begin to cope with this and get some sleep and still live my life?

twins60

jrahlf said:

also recently diagnosed with metastatic GIST
I have just recently been diagnosed with advanced metastatic GIST. I am only 37 years old and having a hard time dealing with this. Any suggestions from anyone on how to learn to cope with this? I am driving myself crazy with worry. I am currently taking Gleevec 400mg everyday as they have said the tumors need to shrink before surgery is an option. I am going to be seeking a second opinion. Any suggestions from anyone on how to begin to cope with this and get some sleep and still live my life?

gist

second opinion good. No good suggestion on trying to sleep better, I think it is just our way to cope with this.Have had to work slowly thru accepting IT JUST IS-

rbwhite

twins60 said:

gist

second opinion good. No good suggestion on trying to sleep better, I think it is just our way to cope with this.Have had to work slowly thru accepting IT JUST IS-

Gist

2014-05-27 I have lived with gist cancer for 10 years now.  The last 9 years I have been on Sutent.In addition, I had 25 radiation treatments.  My tumor is inoperable beacuse it is entwined with the vena cava.  Cancer is scary, but I learned early that I had to allow the Lord to be in charge.  We went to camc, ohio state, duke, and pittsburgh.  I am living my life to the fullest at this time.  The medicatiin has shrank the tumor from 7cm. to 2cm.  The medication may become resistant at any time , so I filled"my bucket" with lots of things I wanted to get done.  Thankfully, I have been able to add a few more items to the bucket. 

God Bless each one as you experience this journey! 

tmckenzi

jrahlf said:

also recently diagnosed with metastatic GIST
I have just recently been diagnosed with advanced metastatic GIST. I am only 37 years old and having a hard time dealing with this. Any suggestions from anyone on how to learn to cope with this? I am driving myself crazy with worry. I am currently taking Gleevec 400mg everyday as they have said the tumors need to shrink before surgery is an option. I am going to be seeking a second opinion. Any suggestions from anyone on how to begin to cope with this and get some sleep and still live my life?

GIST

My wife just diagnosed with a 16cm GIST tumor she does not handle any medication well.  

She did start Gleevec today after trying to find an alternative route.

I'm concerned for her they want to try to shrink this before removing this. I like to research however with all the junk out there

it would be nice to talk with someone who is our has gone through this treatment.

If your interested how can we hook up? I live in rural MN

Beadwever

tmckenzi said:

GIST

My wife just diagnosed with a 16cm GIST tumor she does not handle any medication well.  

She did start Gleevec today after trying to find an alternative route.

I'm concerned for her they want to try to shrink this before removing this. I like to research however with all the junk out there

it would be nice to talk with someone who is our has gone through this treatment.

If your interested how can we hook up? I live in rural MN

Living with GIST

I have had GIST for 2.5 years and have been taking Gleevec.  I was 80 when diagnosed and surgery was never offered.  I have been told the tumor has been getting smaller and in Sept. 2014 after 25 radiation treatments I have been in remission and off Gleevec.  I am scheduled to have another scan in March 2015.  Gleevec does cause many side effects.  I found that taking it before bedtime caused the least nausea.  It does disturb my sleep, however I will soon be 83 so obviously no longer working and I can take naps in the day time.  I have been able to live a fairly normal "old lady" lifestyle while taking Gleevec but I thank the Lord every day now that I am off of Gleevec.

 

Olivebranch1128

How were you diagnosed if not octreoscan?

If your octreoscan didn't show, how did you find out about the tumors? 

 

I I had both colonoscopy and endoscopy, CT, and octreoscan all normal with elevated CgA and 5hiaa levels

ANDERSON22

Whipple for a GIST

I had the Whipple procedure in 2006 for a GIST.  I'm wondering did anyone have to wear compression items or a tight band on their abdomen after their surgery? It important for me to know.  Thanks for any help