Anyone else had lymphoma in the eye area?

sheropenshaw said:

Malt Lymphoma
I am a 35 year old female. I started with Malt Lymphoma in my left eye. I have had both radiation and chemo. I did not have a response to the radiation and by the time I went for a second opinion at The Wills Eye Hospital in Philadelphia Pa...it was then in both eyes. I had my last chemo treatment in July 2009. Seven months later they are not sure that it is gone! I still have swelling and some pain. I go next week to the Dr. My Drs are still not sure what even causes this! I have read that it is rare. Does anyone know more info on this type and what may cause it? I am getting frustrated!

MALT
To the best of my understanding, MALT lymphoma of the eye is rare and they have no idea what causes it. We're just the unlucky ones! The good news is that you should be able to get rid of this stuff eventually. Sorry to hear that you are having so much trouble getting rid of it. What kind of pain do you have? I didn't experience any pain with the radiation, only swelling. There are different types of chemo available to treat it. Keep us updated and hang in there!

coolbrees said:

MALT
I finished radiation on 12/08/09 and I still have swelling in my eye. However, it looks much improved. After my last visit with the radiation oncologist, he told me that it may be perhaps as long as four months before the final effects of the radiation are known. I'm kind of like a Seinfeld episode right now. At times, the eye looks much improved and I don't see much of any bruising or swelling. Other times in the right light, I still see a ghastly black circle around my eye! When i wake up in the morning, my eye is still swollen and "weepy." The doctor also said the only way to know for sure that the lymphoma is gone is to biopsy the eye again. He said a scan wouldn't really show whether it is gone or not because you could barely see it on a scan to begin with. Keeping my fingers crossed and saying my prayers. Good luck to you all and keep us updated!

Malt Lymphoma
Thank you so much for your reply! I have felt alone out here! I just had a biopsy this morning. They are not so sure that I am not having a recurrence. I go back in two weeks. I am just now having slight pain and itching. I did not have pain with the radiation. I just looked like I had a bad sunburn from it. My swelling around my eye has never reduced by much. It is worse at times. My eye looks weepy too. My chemo went very well. I was a lttle tired at times and had some hair thinning and lost most of my brow and eye lashes but that was it. I had six treatments of Rituxin, Vincristine,Cytoxan and then a hefty dose of Prednisone. I just dont know why this is being so stubborn!BY the way...how is your eye sight with this? My is still great. Thank you so much! Good luck to you!

VincentC said:

Malt Lymphoma Eye
Just found out about this site. I had a MALT-lymphoma in my right eye in august 2009. I was treated with RT (30 G-ray total, 15 times in three weeks). It looks like the lymphoma is gone. It took about 6 weeks to visually recover from the RT. Since the end December I'm feeling ok again since I also felt a strange kind of tiredness after RT. No loss in eye-sight, only a slightly quicker irritated right eye. My dr warned me to be carefull with exposure to sunlight, especially the first year (to avoid definitive colour-change of the skin around the eye)
According to my dr prospects are good. 90% chance of no re-occurence. 10% chance it comes back but it will probably be treatable again.

Most of my (unanswered) questions have been about the causes of ocular MALT-lymphoma.
After my treatment I found out about the following study: http://clinicaltrials.gov/ct2/show/record/NCT01010295
If I had known about it before I might have gone for it.

Good luck to you all!

Vincent
Amsterdam - Netherlands

MALT
I read your link concerning the clinical trial involving doxycycline. My oncologist actually read something on that study and treated me with doxycycline just for good measure. I didn't notice any improvement from the treatment but he theorized that perhaps it would prevent the bilateral spread of MALT to my other eye. My eyesight is good but not quite as sharp as my "good" eye; just a little blurry.
I returned for a visit with my opthamologist and he said the MALT seems to be over 90% improved. He also said that any further treatments by the oncologist depend on what kind of result the oncologist was aiming for. I replied that I thought the desired end result was for the damned thing to be gone, not 90%+ improved! The saga continues! But, all in all, life is good!

suekdc said:

Anyone still out there with lymphoma in the eye?
I was just diagnosed with malt lymphoma in my eye. I'm also having trouble finding others with this type of lymphoma. I'd like to hear what radiation was like, and what other symptoms people have had.

Thanks! Sue

lymphoma of the left eye orbit
my name is Rhonna and I am writing on behalf of my son who is now 13 years old.He was diagnosed with NHL in 2005 after a mass was found in his left eye orbit.He has been in remission since 2007 but I am start to worry after several nights of unexplained itching and alot of back pains.He has an appointment scheduled to see a oncologist on the 17th but the wait is UNREAL!

cahnorth said:

MALT Lymphoma - Right Eye
Hi there. I also have MALT in my right retro orbit which was found in October 2008. In March 2008 I went to a walk in clinic for what I thought was a sinus infection. After taking various antibiotics for 4 months with no results, a CT was ordered by a ENT specialist in September and a biopsy in October 2008 confirmed NHL. I began a series of 25 radiation treatments in Dec-Jan and a MRI seven months later indicated the tumour was mildly improved. On the morning of my 2nd radiation treatment, I was unable to walk unassisted and it was later confirmed I experienced "radiation rebounding" which damaged nerves on the LEFT side of my head. I now have left vestibular hypofunction which means my balance is off kilter and require a wheeled walker or cane to get around. The damage was identified by ENT specialist 8 months after the radiation treatments. My right eye is sensitive to light, especially fluorscent and I wear wrap around sunglasses over my prescription eyeglasses (even inside stores, etc). Vision in my right eye fluxuates from clear to blurry and I use artificial tears and gel about 8 times a day. I have no itching but I do experience a dull ache if I read too much. I also lost upper/lower lashes and eyebrow. Lashes and brow are slowly growing back but appear much thinner than left ones. Over all feel good but do not have the stamina I did prior to illness. All the best to you.

MALT lymphoma - right eye
cahnorth - you have been through quite an ordeal! My husband was diagnosed with MALT lymphoma in his right eye about six weeks ago. It has been a roller coaster of ups and downs weighing all of the doctor opinions for treatment (RCHOP versus radiation) A PET scan indicates "significant activity in the sternum", but second opinion doctor does not think it significant enough to warrant RCHOP chemo. When I see all the problems you have had from your radiation treatment it makes me wonder if we should believe the doctor who tells us that RCHOP is the best treatment. (His theory is that the first treatment should be the best treatment and you should go with the treatment that has the best 10 year out stats for success) Is there anyone that will comment about experience with chemo versus radiation? I feel very conflicted and my husband is beginning to get depressed from all of the ups and downs with no decision made.

sheropenshaw said:

malt lymphoma
I have been going through treatments for two years now. I had radiation in 2008. I have blurry vision at times. I then had a round of chemo in 2009 and just had another biopsy that came back still showing malt lymphoma! I am so tired of this and just dont know what to do! See earlier posts by me.

MALT - Think Positive Thoughts
Hi sheropenshaw. I know this is a difficult time and I feel for you. I, too, am tired of all the medical appointments, especially repeating the same information over and over to new doctors or physical therapists however our mental attitude toward the disease is very important. Don't lose faith that progression of the disease will be delayed with treatment. From what I have researched, my disease cannot be cured but it can be treated. Each relapse can probably be successfully treated. I do not regret having the radiation and the loss of balance is an unfortunate result. My oncologist indicated radation therapy was the most successful treatment method and I would not undergo chemotherapy. Several months after treatment I joined a Mindfulness For Life support group at our local hospital. A social worker trained in the teachings of Jon Kabat-Zinn, PhD leads the group. Kabat-Zinn is the Director of the Stress Reduction Clinic at the Univ. of Mass. Medical Center. I found this very helpful as I perform the meditations in my home. I have been going for over a year and it has helped me recognize that I still have a life and cancer is just a part of my life that must be managed. Let me know how you are making out.

sheropenshaw said:

Malt Lymphoma
Thank you so much for your reply! I have felt alone out here! I just had a biopsy this morning. They are not so sure that I am not having a recurrence. I go back in two weeks. I am just now having slight pain and itching. I did not have pain with the radiation. I just looked like I had a bad sunburn from it. My swelling around my eye has never reduced by much. It is worse at times. My eye looks weepy too. My chemo went very well. I was a lttle tired at times and had some hair thinning and lost most of my brow and eye lashes but that was it. I had six treatments of Rituxin, Vincristine,Cytoxan and then a hefty dose of Prednisone. I just dont know why this is being so stubborn!BY the way...how is your eye sight with this? My is still great. Thank you so much! Good luck to you!

malt lymphoma
I have been going to an eye specialist for a year with weepy eyes he did put a needle in to clear tear duct but it didn't make any difference so went to another specialist I have had lymphoma before at the base of my tongue and had chemotherapy 3 yrs ago, the second specialist gave my eye duct a little snip and said come back if no better I went back and he said I think it has to do with lymphoma so he took biopsy sure enough it is Low Grade B -Cell lymphoma? Malt Lymphoma. My haematology specialist has talked it over with other doctors and wants me to have radiotherapy I am really scared of this as I have very sensitive skin and am agoraphobic I am worried about my sight also as my eyesight is good it is just this constant weepy eye which gets blurry I can just leave it and put up with it I just don't know what to do any suggestions. I have also lost both breasts to cancer and my sister and brother died of cancer bowel and brain

mapetite said:

MALT lymphoma - right eye
cahnorth - you have been through quite an ordeal! My husband was diagnosed with MALT lymphoma in his right eye about six weeks ago. It has been a roller coaster of ups and downs weighing all of the doctor opinions for treatment (RCHOP versus radiation) A PET scan indicates "significant activity in the sternum", but second opinion doctor does not think it significant enough to warrant RCHOP chemo. When I see all the problems you have had from your radiation treatment it makes me wonder if we should believe the doctor who tells us that RCHOP is the best treatment. (His theory is that the first treatment should be the best treatment and you should go with the treatment that has the best 10 year out stats for success) Is there anyone that will comment about experience with chemo versus radiation? I feel very conflicted and my husband is beginning to get depressed from all of the ups and downs with no decision made.

chop chemo
I feel for you with this concern, I had CHOP for Non Hodgkins Lymphoma for a tumour on the end of my tongue it is an ordeal i had cramps thrush dry mouth lost my hair and tiredness but when treatment was over my hair came back very curly and felt good still tired though for a long while, that was 3 years ago now have been diagnosed with malt lymphoma in my right eye and they have suggested radiotherapy i am really not happy about this as i am not keen on the side effects but I must say after a couple of treatments with chop my tumour had disappeared and i could eat. but whatever you decide if you have chemo keep away from big shopping centres with a/c as you can get pneumonia and as your immune system is so low you can pick up lots of germs I hope you make the right choice

VincentC said:

one year later
Dear partners in misfortune,

Tonigth I visited this site. I see the last post was about one year ago. I'm wondering if any of you have discovered new 'need to knows' about MALT-lymphomas. I had my radiotherapy 1,5 years ago (right eye) and since a month I have the idea I'm back on my former energy-level. Unfortunately cancer costed me my marriage. My wife couldn't stand my tiredness. It took to long in her view. But that on the side.

As said before I had a 'good' experience with RT. Hardly any long term damage. My tear gland has become a bit lazy but that's all there is. I think I'm quite lucky (fingers crossed). I was wondering if there are differences around the world in the way RT is applied. I had 15 sessions in 3 weeks (30 G-ray if I remember well). They made a mask which fitted exactly around my head. The mask was anchored to a table (with my head in it, so I couldn't move my head an inch). For my eye they made a special lens to protect the center (iris) of my eye. In this lens was metal cylinder (brass I think) of about one centimeter long. This cylinder fitted exactly in the inside of the mask and prevented radiation going through the center of my eye and thus protecting my eye-sight. (Still 160% vision for both eyes since the last check). I was warned for possible cataract on the longer term (which is quit easily fixed with a new lens may it be necessary). Any of you experience with other methods?

This for now. I wish everyone of you all the best.

Vincent, Amsterdam, 7 March 2011

We sound alike
Hello Vincent,
I have MALT lymphoma in my left eye. I just had my 6th radiation treatment today, I will have 3+ weeks of it. I so far, only feel alittle bit of fatigue. I do want a nap after treatments, if possible. So, your last radiotherapy was 1.5 years ago? How are you feeling nowadays?

The way you described the treatment, mask, additional pieces on eye and a thing they call the bolus is used. They keep telling me to use this special cream to prevent a discoloring of skin, did you get that? Did you get dry eye? Are there other follow-up treatments that you have had to stay current with? Please tell me what you have experienced since your last treatment.

Thanks, Joan

Asiago said:

We sound alike
Hello Vincent,
I have MALT lymphoma in my left eye. I just had my 6th radiation treatment today, I will have 3+ weeks of it. I so far, only feel alittle bit of fatigue. I do want a nap after treatments, if possible. So, your last radiotherapy was 1.5 years ago? How are you feeling nowadays?

The way you described the treatment, mask, additional pieces on eye and a thing they call the bolus is used. They keep telling me to use this special cream to prevent a discoloring of skin, did you get that? Did you get dry eye? Are there other follow-up treatments that you have had to stay current with? Please tell me what you have experienced since your last treatment.

Thanks, Joan

radiation treatments
Hi Joan. just read your posting.
I had radiation treatments in fall of 2008 on my left eyelid. the doctors at the clinic tried the 'mask' approach first. but once it was on i tried to scream and they took it off quickly and gave me a sedative. does not work if you are claustrophobic. so. plan B: Rad treatments directly on the eyelid with a protective cover over the actual eye. I had lots of cream to put on throughout treatments and later. my eyelid area is still red and blotchy though. the radiation changed the shape of my eyelid and i had surgery to try and fix it. I lost all my eyebrow hair and eyelashes but it doesn't bother me anymore as i wear my hair over that part of my face.

I have severe dry eye now. if you get dry eye please research Wiley-X sunglasses and 7-Eye glasses. i can't live without them. they are a fabulous invention that i found on-line. Any air on the eye hurts a lot! The sun and any bright light really bothers my eye so i wear the sunglasses most of the time. Thanks to the special glasses, i can now enjoy all my activities again: mtn biking, hiking, canoeing, cycling, all the fun outdoor stuff.
Its great!

I hope the radiation treatments will work and no more cancer! it worked for me.
i was extremely tired the first couple months after treatments. just rest when you can. its very important not to over-do things.
oh, and the name "pirate mo" is because i wore an eyepatch for several months while my eye was getting better. it was very useful as a eyee cover when i went out.