9 replies to this topic

[MJL]

I have been suffering from low hemoglobin and Iron for what seems like an eternity although it has only, ONLY??? been about a month or so. Of course I am extremely weak and tired all of the time, taking a shower wears me out for the day. Add to that brushing my teeth and I have to take a nap. Napping is part of my daily routine now. I had a Colonoscopy and an Endoscopy and fortunately they showed no bleeding and the biopsies were negative. Now I am scheduled for a Capsulated Endoscopy. I just recieved my paperwork and instructions and it says to discontinue iron products including multivitamins containing iron a week ahead of the procedure. Does Gleevec not have an Iron coating? Has anyone had this procedure done and did you have to stop your Gleevec for a week?  I will be seeing my Oncologist next week and I guess I can call him before that. I am curious what others might have had to do in this case. Thanks in advance for any info or input.

MJL.

[Susan61]

Hi:  I am not familiar with a capsulated Endoscopy, but I have had a Endoscopy and 2 colonoscopies which never required me to stop my Gleevec.

Just the day before if I remember correctly.  Can you explain what this endoscopy is like?  Sorry your having to go through this, and having this terrible fatigue.

I hope they can find out what the cause is.

[Trey]

The coating of the Gleevec tablets is indeed iron.  Personally, I would not worry about that, but ask your doc if you wish.  I have learned from experience that asking questions brings on unecessary over-reactions in many cases, but do as you think necessary.

The low HGB and resultant extreme fatigue is not likely an internal bleeding problem, although the probability is not zero.  If it were me, I would switch drugs (probably Sprycel) if that extreme fatigue does not improve in the next several weeks.

[Tedsey]

While on Gleevec for 5 months, I was hit out of the blue (so it seemed) with severe anemia.  I required transfusions and RBC stim shots.  Although I was lucky where I did not feel extreme fatigue, I did have heart palpitations that drove me crazy.  I couldn't walk across the room without my heart feeling like it was going to pound out of my chest.  I also had trouble breathing, but mostly when I was stationary.  Things were just getting worse, and it turned out I was not responding well to Gleevec.  So, I was switched to Sprycel, and although the HGB took some time to improve, it was a marked difference for me.  The low HGB was disabling (I was down to 5.0 and not budging, for the most part, despite the interventions).  I now am around 6-7, which is very good for me (this 1-2 point increase made a huge difference in my life).  Like Trey said, a drug change may help.  I have heard others on the board recovered almost completely from their severe anemia on Sprycel (I am an anomaly, but I am happy with my increased HGB).  

I wish you the best.  I have been there.

Tedsey

[MJL]

Hi Susan,

Capsule Endoscopy looks at the entire small intestine An area that a Colonoscopy and a regular Endoscopy does not reach/see. It is a smalI pill sized video camera with it's own light source that sends images to a data recorder that you wear on a waist belt. They tell me it takes about 8 hours. They hook you up with some wires and the belt, have you swallow the pill and then return 8 hours later so they can retrieve the data. The reason they are looking for a bleed is because my fecal occult tests ( I did 3) showed I have blood in my stool. Yes there is fasting and prep, but only half the prep compared to a colonoscopy. Still, no fun. They tell me you can go about your day normally which in my case means I can resume my napping, and eat 4 hours after you swallow the pill. The big question. What happens to the pill? You pass it in a bowel movement. It is disposable. Sounds like fun huh?

MJL.

[Trey]

Please post the video when you shart that sucka out your.....

[MJL]

LOL Trey. I have visions of these little cameras floating around our public sewer systems transmitting "goodness knows what" to "who knows where"? And if they have a decent battery life flashing thier little lights and confusing anything flying overhead at night.

MJL

[bsbk13]

Hi, my other half had that done last summer.  Was losing blood through his intestines somewhere, but neither the upper nor lower GI studies showed just where.  They had him swallow the camera (he says it's easy--very slick) and yes, it came out the other end.  He calls that his "vacation pictures that no one wants to see".   :-)  It located a bleed....hmm, what was it called....some sort of vascular anomaly.  Anyway, they were able to pass a rigid endoscope just a bit farther than the flexible one and they cauterized it.  All in an outpatient surgery with propofol.  Came out and said OK, we got it, bye.

That was the end of it and he takes one omeprazole (Prilosec) every day now to discourage other bleeds secondary to his low platelet count.

Good luck!  Hope they find something just as simple to fix!

[MJL]

Thanks for your info Beth. I know you two are going through a very tough time right now. I too hope my results will lead to something as easily resolved. Meanwhile sending prayers your way. Take care.

MJL.

[bsbk13]

Thanks, MJL.  Off to Moffitt/Tampa today for the next step in this journey.

Beth & Bill