MRI Results (Mass behind left eye)

searchingtom
searchingtom Member Posts: 7
in Lymphoma (Hodgkin and Non-Hodgkin) #1
The MRI results showed a good response and we will follow up with another MRI in 6 months. My oncologist stated that unlike what most people expect, radiation does not completely wipe out all of the tissue associated with the mass. Some fibroid like tissue remained. She was most interested in the clinical presentation which is much better. No more bulge, no blood shot look, etc..

Anybody else have similar treatment and results ?

I am Stage IV Marginal Zone diagnosed 10-1-2010.

tom

Comments

  • JoanieP
    JoanieP Member Posts: 573
    #2
    Tom
    Hi
    No I have no experience with your type of lymphoma. I wish you well and take it easy and make sure you have a Dr. you completely trust. God bless you
  • miss maggie
    miss maggie Member Posts: 929
    #3
    Marginal Zone
    Hi Tom,

    Originally I was DX Sept 09 with stage 1, marginal, low grade indolent B Cell NHL. The DX was made after my small bowel perforated. I had to have an operation to resect my small bowel. The perforation was caused by NHL. Even though mine was DX as stage 1, I understand staging is not important.

    I had treatment of Rituxan in Dec 2009, once weekly for 4 weeks, followed by a colonscopy in June 2010, which came out negative. Rituxan is the only treatment I received. During this time I had a few Pet Scans. The last 2 scans were negative. The last scan Dec 2010. I am now in remission Jan 2011.

    My sub-type is extranodal marginal zone b cell NHL. My oncologist doesn't expect the NHL to return, but if it does, it might be 4 or 5 years. Are you listening GOD. I will have no maintance treatment for my type of NHL. Not sure if this will help. My NHL was located in a different area of the body, and I had no radiation treatment. Is it possible for you to get a sub type from your doctor?

    I know there are others are this board that can help you further. Everyone was so helpful and positive. I can say they carried me through.

    Love Maggie
  • searchingtom
    searchingtom Member Posts: 7
    #4
    miss maggie said:

    Marginal Zone
    Hi Tom,

    Originally I was DX Sept 09 with stage 1, marginal, low grade indolent B Cell NHL. The DX was made after my small bowel perforated. I had to have an operation to resect my small bowel. The perforation was caused by NHL. Even though mine was DX as stage 1, I understand staging is not important.

    I had treatment of Rituxan in Dec 2009, once weekly for 4 weeks, followed by a colonscopy in June 2010, which came out negative. Rituxan is the only treatment I received. During this time I had a few Pet Scans. The last 2 scans were negative. The last scan Dec 2010. I am now in remission Jan 2011.

    My sub-type is extranodal marginal zone b cell NHL. My oncologist doesn't expect the NHL to return, but if it does, it might be 4 or 5 years. Are you listening GOD. I will have no maintance treatment for my type of NHL. Not sure if this will help. My NHL was located in a different area of the body, and I had no radiation treatment. Is it possible for you to get a sub type from your doctor?

    I know there are others are this board that can help you further. Everyone was so helpful and positive. I can say they carried me through.

    Love Maggie

    Thanks for Responding Everyone - question for Miss Maggie
    It really helps to hear from folks that share some of the same challenges. Miss Maggie I too have marginal indolent small b cell, but I have minimal bone marrow involvement and so technically stage IV. My Oncologist does not have me on Rituxan yet as my blood work looks pretty good and minimal lymph node involvement as well. Miss Maggie how did you tolerate the Rituxan ?

    Thanks,

    tom
  • miss maggie
    miss maggie Member Posts: 929
    #5
    searchingtom said:

    Thanks for Responding Everyone - question for Miss Maggie
    It really helps to hear from folks that share some of the same challenges. Miss Maggie I too have marginal indolent small b cell, but I have minimal bone marrow involvement and so technically stage IV. My Oncologist does not have me on Rituxan yet as my blood work looks pretty good and minimal lymph node involvement as well. Miss Maggie how did you tolerate the Rituxan ?

    Thanks,

    tom

    marginal indolent small B Cell
    Hi Tom,

    I had no problem what so ever. I was first given an infusion of prednisone. (To eliminate an allergic reaction to the Rituxan.) Then I received the Rituxan. Once weekly for 4 weeks in Dec 2009. Since Rituxan is classified as a Monoclonal antibody, perhaps that is why I had no reaction.

    I did have the bone marrow biopsy in Oct 2009, negative involvement, stage 1. I did have blood tests each time I saw the oncologist. I really never questioned the results in the beginning of my DX. Now I do, and everything is fine. Hmmm, I am now curious about the results of my blood tests in the very beginning. Since I will be seeing my oncologist in May 2011, it will have to wait. Good question Tom. I was more concerned with my DX. I attended a few conferences sponsored by Sloan Kettering and Columbia Pres. Cornell Medical Center in NYC. Also, listened to tele-conferences VIA telephone. Even though I completely trust my oncologist and the hospital (NCI approved) she is affiliated with, I wanted to see if things changed for me what my options were. I live outside NYC, about 37 miles or so.

    I am so glad you have minimal bone marrow involvement, and your blood work looks good with minimal lymph node involvement. For me it was so difficult to absorb everything in the beginning, but evenually it all came together. Well almost. When I read the other posts of this board, I wonder.

    You sound very positive, good for you. You and everyone are in my prayers nightly.

    Love Maggie
  • miss maggie
    miss maggie Member Posts: 929
    #6
    searchingtom said:

    Thanks for Responding Everyone - question for Miss Maggie
    It really helps to hear from folks that share some of the same challenges. Miss Maggie I too have marginal indolent small b cell, but I have minimal bone marrow involvement and so technically stage IV. My Oncologist does not have me on Rituxan yet as my blood work looks pretty good and minimal lymph node involvement as well. Miss Maggie how did you tolerate the Rituxan ?

    Thanks,

    tom

    Attention TOM
    Hi Tom,

    I am not sure if you saw my latest post, Feb 17. I gave you incorrect information. I did not receive Prednisone first, and then Rituxan. I received Benadryl first, then Rituxan.

    Sorry Maggie
  • bluerose
    bluerose Member Posts: 1,104
    #7
    Hmmmm
    Hi Tom,

    I had non hodgkins lymphoma and had a bone marrow transplant 23 years ago, am considered cured long ago but have a ton of late effects. I had total body radiation so my eyes got it too. Mega chemo of course was part of the bone marrow transplants back then.

    I was wondering if you could tell me how the mass was first noticed by the docs or did you have other symptoms? Reason I ask is because an opthomologist I saw years ago saw what he said was a small nevis behind my left eye and since then I have had on and off bits of pain and an obvious size difference between my left and right eye. Well obvious to me but most people say they didn't even notice it.

    I am wondering if you had this kind of report before, that it was nothing, just a nevis or did it play out entirely different for you?

    Hope you are doing better.

    Blessings,

    Bluerose
  • searchingtom
    searchingtom Member Posts: 7
    #8
    bluerose said:

    Hmmmm
    Hi Tom,

    I had non hodgkins lymphoma and had a bone marrow transplant 23 years ago, am considered cured long ago but have a ton of late effects. I had total body radiation so my eyes got it too. Mega chemo of course was part of the bone marrow transplants back then.

    I was wondering if you could tell me how the mass was first noticed by the docs or did you have other symptoms? Reason I ask is because an opthomologist I saw years ago saw what he said was a small nevis behind my left eye and since then I have had on and off bits of pain and an obvious size difference between my left and right eye. Well obvious to me but most people say they didn't even notice it.

    I am wondering if you had this kind of report before, that it was nothing, just a nevis or did it play out entirely different for you?

    Hope you are doing better.

    Blessings,

    Bluerose

    About a year ago I started having symptoms in both eyes very similar to dry eye syndrome. I am on the computer all day and read a lot so it did not concern me. My left eye was bloodshot a lot. People kept telling me my eye looked bad. Then it started getting worse. My vision started getting blurry and the eye started to bulge. The doctor kept treating me for dry eye.

    Finally after 6 months she decided to do a CT scan and that is when the mass was found behind the left eye. The originally diagnosed it as optic nerve glioma (a very serious cancer) but after a biopsy they confirmed marginal zone lymphoma.

    The size difference could be a symptom especially if it continues to get more different over time. Ask for a CT scan.

    tom
  • bluerose
    bluerose Member Posts: 1,104
    #9
    searchingtom said:

    About a year ago I started having symptoms in both eyes very similar to dry eye syndrome. I am on the computer all day and read a lot so it did not concern me. My left eye was bloodshot a lot. People kept telling me my eye looked bad. Then it started getting worse. My vision started getting blurry and the eye started to bulge. The doctor kept treating me for dry eye.

    Finally after 6 months she decided to do a CT scan and that is when the mass was found behind the left eye. The originally diagnosed it as optic nerve glioma (a very serious cancer) but after a biopsy they confirmed marginal zone lymphoma.

    The size difference could be a symptom especially if it continues to get more different over time. Ask for a CT scan.

    tom

    Hey Tom
    Thanks for the response to my question.

    The size of the left eye did change since I first got a shot of pain in that eye but seems to have stopped growing, thank goodness, and some days it is more obvious than others, maybe because of swelling of my body for whatever reason.

    I still get the occassional pain in that eye but not often. I have had CTs of that eye but not for awhile now. With new findings of more rads from CTs than they thought, and since I have had so many of them over the years, my doc is paranoid about giving me any more CTs but I can push the request and she will do it. I might just do that, thanks.

    I never had any bloodshot look to the eye but I have major dryness in both eyes and they itch on occassion.

    Thank you for your input, I appreciate it.

    All the best,

    Bluerose

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