9 replies to this topic

[Ly1je2ma3]

I've not been on this site for a couple of years but thought I'd check in and conpare some notes.  I was diagnosed 3/06 with CML and on Gleevec since.

2/11 I got iron deficiency anemia and eventually was diagnosed with GAVE (gastric antral vascular ectasia) which is a chronic GI bleeding problem which caused a hospitalization.

MG GI doctor said it's a rare and mysterious disease that that don't know much about and have no idea why I got it.

I've started having cauterizations which will be done periodically for life to control blood loss.  (1st 10/31...2nd 2/1 which is 3 months.

I read that abdominal bleeding as well as GI perferations are another side effect.  Notice that the list not only gets longer but more serious conditions surfacing?

My questions for you guys are:

1) Has anybody else been diagnosed with GAVE?

2) If so, did you have a discussion about increased risks of perferations while tools and lasers are inserted into the GI system?

   Will it get worse if Gleevec is continued?  (Assuming it could be Gleevec causing it.)

Would appreciate any help or ideas on these subjects.

[Susan61]

Hi:  Personally I have not heard of any perforations of the abdomen or bleeding since I have been involved here in the discussions.  I am on Gleevec since Oct. of 2000, and I have had some GI issues with stomach discomfort, but I am also on a lot of other medications.  What I experience is nothing extreme.  I do take Nexium for Reflux in the Esophagus.

     I always say that everyone handles the different drugs in different ways.  Some get very sick on a TKI and have to switch, and others can take the same drug for years with no problems.  You did say the doctor said it was very rare, therefore, I would not say its from the Gleevec itself.

Susan

[Trey]

GAVE is bleeding just after the pyloric valve of the stomach.  There have been 19 reports of patients taking Gleevec along with other drugs developing GAVE:

http://www.ehealthme...ascular ectasia

Are you taking other drugs (even pain killers)?

[Ly1je2ma3]

Sorry it took so long.  I'm technically challenged and thought I could respond right from my emails, and did.  I just realized you never got it.  Also, applied to other threads. 

  

Yes.  omaprazole, simvistatin being changed to lipitor generic (due to intolerance after years), trazodone (trial), lorazepam (1mg every other night), multi vitamin, fish oil, flax oil, glucose condriton.  This is down to the bare bones for me after elimating all that I could.  I noticed the 2 highest were: 1) Gleevec (19) and 2) omaprazole (10)

Before trazadone, took 1 vicodin every other night alternating with lorazepam for chronic insomnia.  Due to arthritic knees, took Motrin April through Sept and stopped after being told it was causing dizziness/nausea & add'l GI issues.  Due to GAVE, was taking a double dose of iron from March through Oct after realizing the issues above were ongoing after stopping Motrin.

GI doc said no Motrin, asprin or Advil with Gave as they cause bleeding.  (No tylenol with Gleevec leaving me  over the counter options)  Need to figure out what to take for pain/inflammation in my knees.  no pain killers since October.  Never took more than 1 every other day not wanting to become intolerant or develop a dependence.

I was happy to see that you were still helping everyone out.  Your a great resource for the CML bloggers.

I wonder if those 19 (out of so many) would have developed GAVE anyway.  I may never know.

As always, thanks for the info & interest.

[Trey]

I would think it is more likely the Motrin and other drugs since Gleevec by itself does not appear to cause such bleeding, from what I can find.

[Ly1je2ma3]

I hope that's true.  I wouldn't like thinking I'm taking a drug causing blood loss & hospitalizations.  I could switch but better the devil you know.....  Fingers crossed. 

Thank you

[Sneezy12]

Vitamin E ( found in most Multivitamins ) , and Omega-3 in Fish Oils can cause prolongation of bleeding. Frank

[Ly1je2ma3]

Thanks

[GerryL]

I take vitamin E and fish oil and know that if I need to have an operation, I would need to discontinue those two at least a week before the operation. Fish oil also thins your blood so it is not recommended for anyone on a blood thinner such as Warfarin.

[Ly1je2ma3]

Yeah. I think I'm going to stop that and the multivitamin.  Still on omaprazole & they want to double it due to GAVE but I'm not doing it.  (40 to 80mgs day)  That's a big dose.