Orbital MALT Lymphoma

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AngelOnShoulder
AngelOnShoulder Member Posts: 4
in Lymphoma (Hodgkin and Non-Hodgkin) #1
Come join my blog, My Journey - Orbital MALT Lymphoma. I've dedicated this blog to share my experiences with others. Photos of my radiation mask being made and information concerning my radiation treatments. Comments and encouragement are always welcome. Thanks!

http://orbitalmaltlymphoma.blogspot.com

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  • searchingtom
    searchingtom Member Posts: 7
    #2
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    Same Story
    My story is just like yours and I completed the radiation treatment 1 year ago. I was treated for dry eye syndrome for 8 months before they realized something else must be going on. I had a golf ball sized tumor behind my right eyeball.

    I tried to post to your blog site but it wouldn't let me. I also tried to join but it would not show the security verification code.

    Anyway I will try to follow your story as we may learn and support each other through it all.

    tom
  • onlytoday
    onlytoday Member Posts: 609 Member
    #3
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    searchingtom said:

    Same Story
    My story is just like yours and I completed the radiation treatment 1 year ago. I was treated for dry eye syndrome for 8 months before they realized something else must be going on. I had a golf ball sized tumor behind my right eyeball.

    I tried to post to your blog site but it wouldn't let me. I also tried to join but it would not show the security verification code.

    Anyway I will try to follow your story as we may learn and support each other through it all.

    tom

    a question
    Hi Tom,

    Can you share what your symptoms were? How bad was the dry eye and were there other symptoms with it? Thanks.

    The best to you.

    Donna
  • searchingtom
    searchingtom Member Posts: 7
    #4
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    onlytoday said:

    a question
    Hi Tom,

    Can you share what your symptoms were? How bad was the dry eye and were there other symptoms with it? Thanks.

    The best to you.

    Donna

    Orbital MALT Eye Symptoms
    My eyes had been bothering me progressively for about a year (both eyes). My vision had deteriorated to the point that I needed glasses. The progression seemed quite fast to me, to the point that I was scared I was going blind. I have moderate to severe dry eye symptoms in both eyes (confirmed under microscope). They treated me for 3 months with drops of different types and then progressed to Restsis. The dry eye symptoms got better but my left eye (I incorrectly stated my right eye above) continued to be very bloodshot to the point that people were asking me what was wrong with my eye. My opthamologist finally recognized that my eye was starting to bulge out a bit. This is when they ordered the MRI and found the tumor. My first diagnosis was an optic nerve glioma (it looked just like one) that would have only given me 6 weeks to live. I was devestated. The second diagnosis came back as optic nerve sheathe meningioma and I could live up to 2-3 years. But they went behind the eye to get a sample and it came back as Small B cell, marginal zone. I am stage IV as it is in my bone marrow, but my bloodwork is decent (my spleen is somewhat enlarged and seems to be working overtime). I was treated with radiation and now a year later the tumor is significantly smaller and my vision is better. There is no more bloodshot look. I still have significant dry eye symptoms however in both eyes, but my oncologist said I should not take the Restatis.


    Let me know if you have any other specific questions.

    tom
  • onlytoday
    onlytoday Member Posts: 609 Member
    #5
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    searchingtom said:

    Orbital MALT Eye Symptoms
    My eyes had been bothering me progressively for about a year (both eyes). My vision had deteriorated to the point that I needed glasses. The progression seemed quite fast to me, to the point that I was scared I was going blind. I have moderate to severe dry eye symptoms in both eyes (confirmed under microscope). They treated me for 3 months with drops of different types and then progressed to Restsis. The dry eye symptoms got better but my left eye (I incorrectly stated my right eye above) continued to be very bloodshot to the point that people were asking me what was wrong with my eye. My opthamologist finally recognized that my eye was starting to bulge out a bit. This is when they ordered the MRI and found the tumor. My first diagnosis was an optic nerve glioma (it looked just like one) that would have only given me 6 weeks to live. I was devestated. The second diagnosis came back as optic nerve sheathe meningioma and I could live up to 2-3 years. But they went behind the eye to get a sample and it came back as Small B cell, marginal zone. I am stage IV as it is in my bone marrow, but my bloodwork is decent (my spleen is somewhat enlarged and seems to be working overtime). I was treated with radiation and now a year later the tumor is significantly smaller and my vision is better. There is no more bloodshot look. I still have significant dry eye symptoms however in both eyes, but my oncologist said I should not take the Restatis.


    Let me know if you have any other specific questions.

    tom

    Orbital MALT eye symptoms
    Hi Tom,

    Thanks. I too have severe dry eye for at least 2 years now. I use Restasis with limited success. (If any) Had my eyes examined last year around August (2010)after my lymphoma dx and they did not find any swelling but I did need new glasses (just like you I felt that my vision had worsened rather quickly but they told me not to worry and the eye doc said it was age) In May 2010 I was dx with Marginal Zone Lymphoma b cell Stage iv in my lymph nodes and bone marrow. After reading your post and the similarities between us I'm going back to my opthomologist for another check up and ask my oncologist about Restasis. Thank you.

    Donna
  • MALTer07
    MALTer07 Member Posts: 4
    #6
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    Your blog and Facebook MALT Lymphoma page
    Hi Angel,

    I came across your ACS entry via a MALT Google alert about your blog today and was happy to see it! I shared your most recent blog post on the Facebook MALT Lymphoma page that I'm one of the administrators of. Here's the link: https://www.facebook.com/groups/110788498140/ It's a closed group so in order to join a request needs to be sent.(Some of us are concerned about privacy issues).

    I don't know if you're currently a member there or if you've ever checked the page out, but I would really love to see you share your posts there. My diagnosis was gastric but I know there are other members with orbital MALT. The page doesn't have a lot of activity, and I would love to see more interaction there. If you're at all interested, please let me know.

    I tried to comment on your post directly, but I was unable to do so. Anyway, I wish you the best on your treatment and hope you feel better soon. Happy Holidays! (Karen B.)

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