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Gastrointestinal AVMs

I am looking for others with bleeding stomach and intestinal AVMs. Mine has been particularly bad this last year. Had 20 cauterized only to have them rebleed. I get three weeks of iron infusions every three months or sooner right now. Are there others out there like me?

Members: 13
Latest Activity: on Sunday

Discussion Forum

Thalidomide and GI AVMs

Started by dancermom Jan 26. 0 Replies

Here are some links to resources about thalidomide and GI avms:http://clinicaltrials.gov/show/NCT00389935…Continue

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Comment by Bacu on Sunday
Allie, it works as a vasoconstrictor to stop or shrink the source of bleeding. Here is a link from a nurses site that explains it in my language (non-medical). I just don't understand the medical lingo on some of the sites. http://allnurses.com/general-nursing-discussion/octreotide-407878.html
Obviously, they use it a lot for gi bleeds from this site. My nurses at the Infusion Center tell me that the use it a lot for diarrhea in cancer patients.
Comment by Alice (Allie) Elaine Mastello on Sunday

How did they come up with this medicine for treatment, did they test your growth hormone? (I was reading about the link with the growth hormone.) I know, wonder down the road what problems will happen from the meds/ Isn't weird how the AVMs come about in our otherwise healthy bodies!

Comment by Bacu on Sunday
Allie, I don't have tumors either. The drug generic name is Octreotide. I take one 20mg shot once a month. The drug was not developed for treating avms, but controls the bleeding in some patients. Other than the avms I am perfectly healthy (yes, I knocked on wood). Will be interesting to see if the drug creates other problems down the road. Hope your feeling better.
Comment by Alice (Allie) Elaine Mastello on Sunday

I looked on line for the meds that you are taking Bacu. Not sure how that would work with me since I have no tumors. Thanks for your input.

Comment by Bacu on Friday
Allie, sorry to see that you are having a bad time of it again. Please know that we all are wishing you a swift recovery. Reading over the entries since I was last online I see that you are taking on a lot right now. Prayers are with you and your family. I have been doing well. The Sandostatin Lars Depot the doctor prescribed seems to be keeping the avm's at bay. Some hair loss from the medication but I can handle that over the bleeding. We'll see how well it worked when I stop taking it in December. This drug may be one that could help you.

Moderator
Comment by dancermom on Thursday

Warn welcome to Johntheelder. Please see John's comments on the Angiodysplasia discussion up above.


Moderator
Comment by dancermom on Thursday

Oh my, Allie. That sounds really painful. I hope your recovery is swift.

Comment by Alice (Allie) Elaine Mastello on Thursday

Just got back from an EGD, they burned 43 avms out of my stomach. My stomach is grousom

Comment by Alice (Allie) Elaine Mastello on July 5, 2014 at 11:32am

My husband and I are hanging in there. Both of us have a lot of blood work coming up. It will be a week or more before either of us get results. Hope everyone is having a great holiday!

Comment by Alice (Allie) Elaine Mastello on July 5, 2014 at 11:30am

Good info. Thanks

 

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looks like avm free

Posted by Martin Brooks on July 13, 2014 at 6:46am 7 Comments

So 10 hours surgery on Monday to cut out my avm and I woke with no movement or eye sight problem which is great !!!!!!!!, I did need a "drain" fitted which I think was due to bleeding. Surgery was estimated at 3 to 4 hours and turned out was 10 !…

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