Newbie to site but not to my marginal zone lymphoma

Hi, Everyone

I was diagnosed with MZL in my chest and mediastum in October 2011 and had 6 (monthly) treatments of Bendamustine and Rituxin.  I've been in remission since last treatment in April 2012.  My one-year CT scan (chest) showed a huge improvement and my hubby and I have been celebrating well to start year 2.  After that news, my hemotologist asked if I had any other pain or issue; I told her that I've been going to see docs at the eye care center.  Occasional slightly droopy eyelid with redness in eye.  First eye doc said dryness of eyes and gave drops to use.  When I went back because my eye was not better and actually getting worse (occasionally achy, not relieved by artificial tears drops, and mild headache above my eye) I went back to a different eye doc.  Affirmed dry eyes and changed the treatment.  My right eye has begun hurting more, eye drops do nothing to relieve, I'm becoming light sensiive - and grouchy because I decided I can't wear my contact anymore and have to wear reading glasses.  My sight is a bit blurry.  So ... my hemotologist is having me go in for a CT scan of my head next week with a focus on my right orbit.  She doesn't think that it will turn out to be related to lymphoma, but didn't make a promise.  I go to the Carbone Cancer Center at the University of Wisconsin Hospital and Clinics, and my hemotologist sees alot of patients with MZL.  She said that lymphoma loves eyes and if my eye problem is lymphoma it is very treatable.

Just wondered if anyone else has had an experience with lymphoma in eye ...

Deb

Comments

  • Rocquie
    Rocquie Member Posts: 869 Member
    Your eyes

    Hi Deb, I'm glad you are here. I'm so sorry you are having problems with your eyes and I sure hope it is not lymphoma. What day is your scan? I want to be thinking of you that day. I believe there was someone here, recently, who posted about lymphoma in the eyes, but I don't think it was marginal zone. You could use the search boxes to find out more, I'm sure. Also, someone will come along soon who has some information for you.

    Good luck next week!

    Rocquie

     

  • LadySun
    LadySun Member Posts: 2
    Rocquie said:

    Your eyes

    Hi Deb, I'm glad you are here. I'm so sorry you are having problems with your eyes and I sure hope it is not lymphoma. What day is your scan? I want to be thinking of you that day. I believe there was someone here, recently, who posted about lymphoma in the eyes, but I don't think it was marginal zone. You could use the search boxes to find out more, I'm sure. Also, someone will come along soon who has some information for you.

    Good luck next week!

    Rocquie

     

    Thanks, Rocquie.

    I'll be going to the radiology lab on Wednesday the 24th.  My hematologist will call me when she receives the results and we'll see if we need to do anything else.  If the results aren't as we hope, the next step is an MRI.  

    I appreciated reading the things in life that support your spirit.  I've found that growing to live one day at a time, grateful to take the first waking breath and staying as much in the moment as I'm able and then going to bed at night grateful for the day and its gifts,  has been my second greatest support after my amazing husband.

    Deb