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Anyone With Malt Bilateral Orbital Nhl?

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Subject: anyone with MALT bilateral orbital NHL?
Date: 10/27/2007

I had 4 orbital tumors removed surgically last March ...pathology revealed MALT NHL.  I also had a large tumor over my left ear.  I was treated with Rituxan X4.  The tumor resolved but filled with scar tissue which was surgically removed and biopsied after about 6 months.  Now the turmor is recurring and my eyelids are very swollen, droopy and I have a thick sticky secretion from both eyes and blurry vision (I have new glasses of about 3 months).  I also have a continual headache...24/7 (especially around my left eye).  There is a funny numb felling in the left front quarter of my head. I also have photo sensitivity again.  Sometimes I have a prolonged funny feeling in my left eye like I'm seeing through a sheer veil.

I have seen an opthamologist, eye surgeon, ENT, neurologist but none so far have referred me back to my oncologist.  Everything has gotten much more pronounced in the last few weeks.  My dentist felt an enlarged lymph gland and referred me to an ENT for a biopsy.  He couldn't feel anything.  I saw my dentist yesterday and he said the lymph node is still there.  I have an appt. with the ENT on Monday for follow up.

I am convinced the MALT is back and don't know why none of the Docs have considered going back to the oncologist.

Thanks,

Kitty5

 

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