Anyone else had lymphoma in the eye area?

Teacher03

I'm newly diagnosed with extranodal non-Hodgkins lymphoma. Mine is on the conjunctiva of my right eye. My doctor doesn't plan to do any more surgery than he already has - a biopsy - and I will have radiation treatments to zap the cancer.

I've had a CT-scan, which showed no other signs of lymphoma anywhere else, and a bone marrow biopsy, which showed no lymphoma in the marrow. My next step is to meet with a radiation oncologist this Wednesday to discuss treatment. I'm hoping the doctor will also get my treatment scheduled at that time. I'm ready to have this "freeloader" zapped out of me!

I'd like to hear from anyone who has been treated for this type of lymphoma - particularly someone who's had it in the eye area.

Thanks,
Teacher03

lagusta

I was diagnosed with low-graed B cell MALT lymphoma of the conjunctiva in both eyes June 2002. Like you, thankfully, had a negative work-up--MRI brain, bone marrow biopsy, CT neck, chest, abd, pelvis, and an endoscopy and colonoscopy.
The ocular oncologist is treating me with cryosurgery (liquid nitrogen) rather than using radiation. It's a long process and I still have 'spots', but he says all is going well, that I'm 97% of the way home. I had many, many, follicles as in greater than 100 in both eyes and upper and lower.

I see that your posting was in January, so you must have had your radiation treatments by now. Hope all went well. Am interested in hearing your experiences.

Teacher03

lagusta said:

I was diagnosed with low-graed B cell MALT lymphoma of the conjunctiva in both eyes June 2002. Like you, thankfully, had a negative work-up--MRI brain, bone marrow biopsy, CT neck, chest, abd, pelvis, and an endoscopy and colonoscopy.
The ocular oncologist is treating me with cryosurgery (liquid nitrogen) rather than using radiation. It's a long process and I still have 'spots', but he says all is going well, that I'm 97% of the way home. I had many, many, follicles as in greater than 100 in both eyes and upper and lower.

I see that your posting was in January, so you must have had your radiation treatments by now. Hope all went well. Am interested in hearing your experiences.

I just happened to go back and check this old posting of mine and found the reply that you wrote just yesterday!

It sounds like you have the same thing I have. I finished my radiation treatments on Feb. 11 and have been going back for follow-up visits with the radiation oncologist and the ophthalmologist. My last visit to both was this past Wednesday. The ophthalmologist has treated many cases like mine and has never had one patient to have a recurrence. I'm encouraged by that. However, the radiation oncologist started talking about what we might have to do if my tumor doesn't completely disappear (it's shrunk considerably but it's basically still there and there's still some swelling). He mentioned that another biopsy might be needed, that it might turn out to be something beside lymphoma, that I might wind up needing chemotherapy after all. At the time, he seemed to be just talking about what happens in that small percentage of cases where this recurs. But after I left his office, and the more I got to thinking about it, the more it's worried me. However, he wants me back in four weeks (I'd been going every two weeks), and the ophthalmologist wants me back in six weeks. The ophthalmologist also told me that my tear ducts look sunburned and that I'm still experiencing effects of the radiation. He didn't seem at all concerned about the fact that the tumor wasn't gone. It's like I'm getting two different responses from two different doctors!

Oh, yeah. One of the side-effects of the radiation was to lose hair in the back of my head where I received the "exit dose." It's an area about 3 inches square, right behind my right eye - like the beams went straight through and took my hair with them! I wasn't expecting it to happen, so I'm a little upset about that. I bought a wig the other day, but I'm not yet used to putting it on by myself.

I guess my confidence is kind of shaken . . . .

Thanks for responding to me. I'm really glad to finally find someone else who knows what this is like!

Hope to hear back from you soon!

Thanks,
Estelle

lagusta

Teacher03 said:

I just happened to go back and check this old posting of mine and found the reply that you wrote just yesterday!

It sounds like you have the same thing I have. I finished my radiation treatments on Feb. 11 and have been going back for follow-up visits with the radiation oncologist and the ophthalmologist. My last visit to both was this past Wednesday. The ophthalmologist has treated many cases like mine and has never had one patient to have a recurrence. I'm encouraged by that. However, the radiation oncologist started talking about what we might have to do if my tumor doesn't completely disappear (it's shrunk considerably but it's basically still there and there's still some swelling). He mentioned that another biopsy might be needed, that it might turn out to be something beside lymphoma, that I might wind up needing chemotherapy after all. At the time, he seemed to be just talking about what happens in that small percentage of cases where this recurs. But after I left his office, and the more I got to thinking about it, the more it's worried me. However, he wants me back in four weeks (I'd been going every two weeks), and the ophthalmologist wants me back in six weeks. The ophthalmologist also told me that my tear ducts look sunburned and that I'm still experiencing effects of the radiation. He didn't seem at all concerned about the fact that the tumor wasn't gone. It's like I'm getting two different responses from two different doctors!

Oh, yeah. One of the side-effects of the radiation was to lose hair in the back of my head where I received the "exit dose." It's an area about 3 inches square, right behind my right eye - like the beams went straight through and took my hair with them! I wasn't expecting it to happen, so I'm a little upset about that. I bought a wig the other day, but I'm not yet used to putting it on by myself.

I guess my confidence is kind of shaken . . . .

Thanks for responding to me. I'm really glad to finally find someone else who knows what this is like!

Hope to hear back from you soon!

Thanks,
Estelle

Thanks for checking back. I share your frustration at wanting it GONE. My specialist says that it's not uncommon for the follicles to recur and need treatment again. He (and my 'regular' oncologist) recommend that chemo be used when and if my case is one of the 20-30% cases that spread elsewhere. One of my spots was biopsied a second time, too. The specialist has me on a 3 month re-check. He says that the spots are currently too small to treat.

I don't know what specific type of extranodal NHL yours is so I don't know if the statistics are the same for you as for me.

So sorry to hear about the hair loss and hope that you have a 'cute' wig and that your own hair will grow back soon.

Being a cancer survivor is kind of like living with a chronic disease, I think. It will never go away, we just have to incorporate it into our lives and plan for the best.

Teacher03

lagusta said:

Thanks for checking back. I share your frustration at wanting it GONE. My specialist says that it's not uncommon for the follicles to recur and need treatment again. He (and my 'regular' oncologist) recommend that chemo be used when and if my case is one of the 20-30% cases that spread elsewhere. One of my spots was biopsied a second time, too. The specialist has me on a 3 month re-check. He says that the spots are currently too small to treat.

I don't know what specific type of extranodal NHL yours is so I don't know if the statistics are the same for you as for me.

So sorry to hear about the hair loss and hope that you have a 'cute' wig and that your own hair will grow back soon.

Being a cancer survivor is kind of like living with a chronic disease, I think. It will never go away, we just have to incorporate it into our lives and plan for the best.

I've been told there is only at most about a 15% chance of the cancer recurring in the same site. And about 5-10% chance it will recur somewhere else.

I did get a wig last week. I'm still trying to get used to wearing it. It keeps feeling like it's slipping on my head! Like a hairy beanie!

I also had a check-up with my hematology oncologist Monday, and she wants to see me again in three months. She assured me that I'm doing fine at this stage of the game and that the other doctor was telling me worst-case scenario stuff. I felt better after talking to her.

lagusta

Teacher03 said:

I've been told there is only at most about a 15% chance of the cancer recurring in the same site. And about 5-10% chance it will recur somewhere else.

I did get a wig last week. I'm still trying to get used to wearing it. It keeps feeling like it's slipping on my head! Like a hairy beanie!

I also had a check-up with my hematology oncologist Monday, and she wants to see me again in three months. She assured me that I'm doing fine at this stage of the game and that the other doctor was telling me worst-case scenario stuff. I felt better after talking to her.

I'm so glad for your good news and reassurance! You probably feel like you can take a deep breath again. Your odds sound very good.

I am on a 3 month oncology check, too. Good to have close watch.

Hope your wig days go by easily and that you'll soon grow your own hair again. Cute comment about the "hairy beanie". I'm not familiar with hair loss due to radiation so I'm assuming it's temporary loss, not permanent??? I appreciate keeping in touch.

Teacher03

lagusta said:

I'm so glad for your good news and reassurance! You probably feel like you can take a deep breath again. Your odds sound very good.

I am on a 3 month oncology check, too. Good to have close watch.

Hope your wig days go by easily and that you'll soon grow your own hair again. Cute comment about the "hairy beanie". I'm not familiar with hair loss due to radiation so I'm assuming it's temporary loss, not permanent??? I appreciate keeping in touch.

Someone had told me about a gel band you can get to hold your wig in place, so I called around yesterday to see if I could get one. I happened to call a salon that specializes in helping cancer patients cope with hair loss, and the lady I talked to convinced me to bring my wig in and she'd help me get it fitted properly. Turns out that the wig cap was most of the problem. It kept slipping, so the wig slipped too! I still have enough hair that I can make pincurls in my hair and give the wig something to anchor to. She also showed me how to place pins strategically to keep the wig in place, and how to blend my own hair around my face with the wig so that it looks more natural. In addition, she thinned the wig a little around my face so that it looks and feels more natural. I even got a compliment from a clerk at Whole Foods Market last night on what a cute hairstyle I have! That really helped boost my spirits! I'll probably go back to that salon next week to have her cut what's left of my hair to blend in the layers and better hide the bald spot.

lagusta

Teacher03 said:

Someone had told me about a gel band you can get to hold your wig in place, so I called around yesterday to see if I could get one. I happened to call a salon that specializes in helping cancer patients cope with hair loss, and the lady I talked to convinced me to bring my wig in and she'd help me get it fitted properly. Turns out that the wig cap was most of the problem. It kept slipping, so the wig slipped too! I still have enough hair that I can make pincurls in my hair and give the wig something to anchor to. She also showed me how to place pins strategically to keep the wig in place, and how to blend my own hair around my face with the wig so that it looks more natural. In addition, she thinned the wig a little around my face so that it looks and feels more natural. I even got a compliment from a clerk at Whole Foods Market last night on what a cute hairstyle I have! That really helped boost my spirits! I'll probably go back to that salon next week to have her cut what's left of my hair to blend in the layers and better hide the bald spot.

Good for you! Glad you got that worked out.

babastar

lagusta said:

Good for you! Glad you got that worked out.

Hi...I had orbital lymphoma last year in my left eye and also in my left breast. I completed 15 rounds of radiation in each area. I also lost hair at the exit area which was around my right ear. It does grow back and it grew back very dark (like my original hair color). I am now salt & pepper except for that area. It is not real noticeable except to me and I am just glad it grew back! The tumor is gone according to the MRI and I will follow up this year in August. I have had problems with dry eye so I had my bottom tear duct cauterized and now have a plug in my upper tear duct. So far, so good. This dry eye thing has been very painful and I at one point my cornea had abrasions on it so they had to scrape it and let it re-heal. My treatments were in May 2002 and then I reocurred right after radiation on my scalp so I completed 8 treatments of Rituxin the end of October and have been in remission since Dec 2002. I was originally diagnosed in 1995 and completed 6 rounds of CHOP. Was in remission for 4 years and then reocurred in my right breast in 2000 and completed 25 blasts of radiation. So I am just hoping my right eye will stay healthy at this point. The doctors say I sure get it in the weirdest places and it is acting like MALT but the biopsy's always show it is mixed cell follicular. So I have become quite an expert at dealing with this disease! Don't let it get you down...hang in and I am glad you have found a wig that is working out for you. Hope this helps!

jerilynng

babastar said:

Hi...I had orbital lymphoma last year in my left eye and also in my left breast. I completed 15 rounds of radiation in each area. I also lost hair at the exit area which was around my right ear. It does grow back and it grew back very dark (like my original hair color). I am now salt & pepper except for that area. It is not real noticeable except to me and I am just glad it grew back! The tumor is gone according to the MRI and I will follow up this year in August. I have had problems with dry eye so I had my bottom tear duct cauterized and now have a plug in my upper tear duct. So far, so good. This dry eye thing has been very painful and I at one point my cornea had abrasions on it so they had to scrape it and let it re-heal. My treatments were in May 2002 and then I reocurred right after radiation on my scalp so I completed 8 treatments of Rituxin the end of October and have been in remission since Dec 2002. I was originally diagnosed in 1995 and completed 6 rounds of CHOP. Was in remission for 4 years and then reocurred in my right breast in 2000 and completed 25 blasts of radiation. So I am just hoping my right eye will stay healthy at this point. The doctors say I sure get it in the weirdest places and it is acting like MALT but the biopsy's always show it is mixed cell follicular. So I have become quite an expert at dealing with this disease! Don't let it get you down...hang in and I am glad you have found a wig that is working out for you. Hope this helps!

Hi, I just read your reply to Teacher03. Did your lymphoma begin in your orbit? I was diagnosed with orbital lymphoma three years ago after a biopsy on a tumor in my right orbit. I went through a series of radiation and it was greatly reduced. Then this past year, I discovered a tumor in my left eye orbit. I again went through radiation, but this time, the tumor was not affected. I have had three more MRIs and it has not grown but also has not been reduced. I have not found anyone else who had it begin in their orbit and would love to talk if this is the case. Like you, the doctor said that this is most strange as a beginning place for lymphoma. Jeri

tobiano

Oh my TeacherO3, I was diagnosed with MALT Lymphoma in the conjunctiva of my right eye, which almost completely encircled the eye. I had a brain scan, which came back negative. The dr did a biopsy anyway since he saw this type of cancer once 20 yrs ago in medical training. Good thing he went with his gut. It is my understanding that when the eye is the primary site for MALT that it makes up <1% of all lymphoma cases in the world. There is also 7% chance that it will go bilateral, which mine did. I received 20 treatments of radiation. I wore contacts and my head was held in a customized mask during treatment. To date there is no presentation of disease.

Most cases of MALT are found in the agricultural areas, thus, it is surmised that chemicals, pesticides etc. maybe associated to the disease. Consequently, I have revised my diet to mostly organic, high antioxidants, filtered water, no saturated fats and no sugar. According to my dietician, sugar is to cancer as gas is to a car. Stevia is a plant grown in Paraguay and is 10-20 times sweeter than sugar in leaf form, and 200-300 times sweeter in powder form. It has medicinal and antioxidant values. It can be bought at health food stores.

Since MALT of the eye is extemely rare, not many eye drs have seen it, and to compound the situation, there are few ocular onocologists. Wills Eye Hospital in Philadelphia (Dr Jerry and Carol Shields) are the leading experts, worldwide, in the disease. You might consider visiting them. I visited them; they confirmed my condition and gave their opinion. It was worth the trip, but my husband and I waited 6 hrs!!, in the examining room (without water or food) before either stepped in to see me, and then I only saw each for about 10 mins. I was examined thoroughly by a dr in fellowship, though. I had many questions which didn't get answered, but they have the best equipment to take very detailed pictures of the eyes, which I requested a copy of for my doctors. The Shields have done a study that followed about 117 patients over about 10 yrs. Results indicate that there can be about a 40-50% that the cancer will present itself elsewhere in the body within the first 5 yrs, so frequent evaluations by an oncologist is necessary. Those with bilateral presentation tend to have higher risks of systemic presentation in 5 yrs.

The conjunctiva is the best part of the eye for MALT to present itself. MALT is very responsive to radiation. My radiologist is Dr. Michael Hunter, and my oncologist is Dr. Carol Van Haelst, both at Evergreen Hospital in Kirkland, WA.

After treatment, I visited Oliver Press at the Seattle Cancer Care Alliance, whom has experience with about 40 patients with MALT of the eye. About 4 were with secondary presentation, the rest were primary presentation. All are alive and free of cancer 12 yrs later, if I remember correctly.

Dr. Press is a lymphoma expert and researcher, as well someone who runs his own practice. He is working on a vaccine for the aggressive form of NHL, but forget which cell, T or B. There are many great therapies out there for indolent (slow growing) B-cell NHL, including antibody therapy.

MALT is very slow growing but can transform into aggressive which tends to be resistent to treatment. All drs. have told me that out of all the NHLs to present with that MALT is the one to get. Maybe so, but I am still living life as if the other shoe is going to drop. I daily check my eyes (10% chance for disease to represent in the eyes). I feel guilty if I don't eat right. I am trying to live as a cancer survivor, but it is hard to grasp mentally.

I just had my 3 month follow-up with my oncologist. Blood work and physical are fine. In Dec I will have another visit with her, blood work, and this time a full body scan, but not sure which technology: PET, CT or combo of both, which I had each back in the spring, along with bone marrow biopsy.

Lymphoma Research Foundation is having its annual forum in WA DC Oct 25-26. Top experts will speak about scan technologies, diet, insurance and there will be break-out sessions for different diseases, too.

It would be great if we could stay in touch. I hope all turns out well for you....odds are in your favor!!

tobiano

Teacher03 said:

I just happened to go back and check this old posting of mine and found the reply that you wrote just yesterday!

It sounds like you have the same thing I have. I finished my radiation treatments on Feb. 11 and have been going back for follow-up visits with the radiation oncologist and the ophthalmologist. My last visit to both was this past Wednesday. The ophthalmologist has treated many cases like mine and has never had one patient to have a recurrence. I'm encouraged by that. However, the radiation oncologist started talking about what we might have to do if my tumor doesn't completely disappear (it's shrunk considerably but it's basically still there and there's still some swelling). He mentioned that another biopsy might be needed, that it might turn out to be something beside lymphoma, that I might wind up needing chemotherapy after all. At the time, he seemed to be just talking about what happens in that small percentage of cases where this recurs. But after I left his office, and the more I got to thinking about it, the more it's worried me. However, he wants me back in four weeks (I'd been going every two weeks), and the ophthalmologist wants me back in six weeks. The ophthalmologist also told me that my tear ducts look sunburned and that I'm still experiencing effects of the radiation. He didn't seem at all concerned about the fact that the tumor wasn't gone. It's like I'm getting two different responses from two different doctors!

Oh, yeah. One of the side-effects of the radiation was to lose hair in the back of my head where I received the "exit dose." It's an area about 3 inches square, right behind my right eye - like the beams went straight through and took my hair with them! I wasn't expecting it to happen, so I'm a little upset about that. I bought a wig the other day, but I'm not yet used to putting it on by myself.

I guess my confidence is kind of shaken . . . .

Thanks for responding to me. I'm really glad to finally find someone else who knows what this is like!

Hope to hear back from you soon!

Thanks,
Estelle

Teacher03, I posted for the first time yesterday. The radiation I received only radiated the conjunctiva. It was at Evergreen Medical Center, Kirkland, WA. The radiation dept is a new $10 mil addition, and has the latest and greatest equipment. Not to mention that the dept team has superb people, whom are very proactive. My radiologist, Michael Hunter (425-899-1860), is the best, and certainly is aggressive at going after my MALT. (He has a book coming out this fall on cancer and nutrition). You might want to advise with him. My oncologist, Carol Van Haelst (425-899-3181), also at Evergreen is super, as well. She is up to date on the latest and greastest, has ties to the Mayo Clinic and has connected with Oliver Press at Seattle Cancer Care Alliance about my case. She is particularly pro-patient, easy to talk to, and explains everything.

I am surprised that your opthalmologist has seen 'many' cases of MALT of the eye, especially since it is extremely rare for the eyes to be the primary site of MALT. From how I understand things, radiation is the best way to go after MALT in the eye, especially since it is particularly sensitve to radiation.

FYI, my ophthalmologist is Mike Gilbert, Bellevue, WA (425-450-2020). For my first biopsy, he sent it to two different labs. One lab did tests on a dead specimen, and the other lab did tests on a live specimen. He first consulted the pathologist, before cutting the the suspected tissue, whom directed him to specifics procedures to retrieve the specimens.

I don't know where you live but if you are out of state maybe you can send them all your records and talk over the phone, at the very least. Seattle is quite known for its cancer treatment, which is no empty boast, from my experience.

Please feel free to email me at my personal email address: tobiano@verizon.net. I would also love to hear from anyone else who has been diagnosed with MALT of the conjunctiva of the eyes.

A compromised immune system, Epstein Bar Virus, and Helicobactor pylori bacteria are sometimes connected to MALT.

tobiano

jerilynng said:

Hi, I just read your reply to Teacher03. Did your lymphoma begin in your orbit? I was diagnosed with orbital lymphoma three years ago after a biopsy on a tumor in my right orbit. I went through a series of radiation and it was greatly reduced. Then this past year, I discovered a tumor in my left eye orbit. I again went through radiation, but this time, the tumor was not affected. I have had three more MRIs and it has not grown but also has not been reduced. I have not found anyone else who had it begin in their orbit and would love to talk if this is the case. Like you, the doctor said that this is most strange as a beginning place for lymphoma. Jeri

What part of the orbit did the lymphoma appear?

tobiano

lagusta said:

Thanks for checking back. I share your frustration at wanting it GONE. My specialist says that it's not uncommon for the follicles to recur and need treatment again. He (and my 'regular' oncologist) recommend that chemo be used when and if my case is one of the 20-30% cases that spread elsewhere. One of my spots was biopsied a second time, too. The specialist has me on a 3 month re-check. He says that the spots are currently too small to treat.

I don't know what specific type of extranodal NHL yours is so I don't know if the statistics are the same for you as for me.

So sorry to hear about the hair loss and hope that you have a 'cute' wig and that your own hair will grow back soon.

Being a cancer survivor is kind of like living with a chronic disease, I think. It will never go away, we just have to incorporate it into our lives and plan for the best.

For those who have unilateral MALT, then systemic presentation within the first 5 yrs is about 30%. For those of us who have bilateral MALT, our odds are slightly higher, ~40-50%. If 5yrs pass without disease presentation, then the odds get slightly better that the disease will not present itself, but the odds never reduce to 0%.

MALT is associated with the mucus membranes of the body, and typically first presents itself in the stomach (2/3 of the cases). Typically, when MALT presents itself in the eye, it is because it is a secondary site. MALT makes up <1% of all lymphoma cases when the eyes are the primary sites.

Even though MALT is lymphoma, it typically isn't lymphoma of the nodes, although there is always a chance it could migrate there.

I just had my 3 month check-up with my oncologist, and blood work was done. I see her in Dec and blood work will be done again. I presume blood work will be involved each vist. A body (full?) body scan will happen in Dec (it has been 9mos since my last one). As long as my blood work and physicals turn out fine then the scans will possibly happen only once a year.

Rectal bleeding can be a sign of MALT in the intestine, which I recently experience so my lower colon will be examined, although I had a full screening during a routine physical Dec 02 and it was healthy. So, I don't expect to hear that anything is amiss. But I will take the opportunity to ask the specialist how often I should have my colon screen since the stomach and gut are typical spots for MALT. My family physician tells me that the small intestine is the likely place for MALT. I understand that current tech to screen the small intestine is done by swallowing a pill size camera.

I am on a year recall to see my radiologist, and possibly that,too, for my ophthalmologist. Lots of drs but it is great to have the team to evaluate me.

janetp

tobiano said:

For those who have unilateral MALT, then systemic presentation within the first 5 yrs is about 30%. For those of us who have bilateral MALT, our odds are slightly higher, ~40-50%. If 5yrs pass without disease presentation, then the odds get slightly better that the disease will not present itself, but the odds never reduce to 0%.

MALT is associated with the mucus membranes of the body, and typically first presents itself in the stomach (2/3 of the cases). Typically, when MALT presents itself in the eye, it is because it is a secondary site. MALT makes up <1% of all lymphoma cases when the eyes are the primary sites.

Even though MALT is lymphoma, it typically isn't lymphoma of the nodes, although there is always a chance it could migrate there.

I just had my 3 month check-up with my oncologist, and blood work was done. I see her in Dec and blood work will be done again. I presume blood work will be involved each vist. A body (full?) body scan will happen in Dec (it has been 9mos since my last one). As long as my blood work and physicals turn out fine then the scans will possibly happen only once a year.

Rectal bleeding can be a sign of MALT in the intestine, which I recently experience so my lower colon will be examined, although I had a full screening during a routine physical Dec 02 and it was healthy. So, I don't expect to hear that anything is amiss. But I will take the opportunity to ask the specialist how often I should have my colon screen since the stomach and gut are typical spots for MALT. My family physician tells me that the small intestine is the likely place for MALT. I understand that current tech to screen the small intestine is done by swallowing a pill size camera.

I am on a year recall to see my radiologist, and possibly that,too, for my ophthalmologist. Lots of drs but it is great to have the team to evaluate me.</p>

I had lymphoma in the small bowel (2/01). It was removed and I received no treatment. I need help to know if this was the right course for me. My oncologist and surgeons disagreed. The oncology stated that I was cancer free but the surgeon felt the antibodies would help. I have not found alot of info on the MALT lymphoma. This was the first thing I read. Thank you.

rola

tobiano said:

Oh my TeacherO3, I was diagnosed with MALT Lymphoma in the conjunctiva of my right eye, which almost completely encircled the eye. I had a brain scan, which came back negative. The dr did a biopsy anyway since he saw this type of cancer once 20 yrs ago in medical training. Good thing he went with his gut. It is my understanding that when the eye is the primary site for MALT that it makes up <1% of all lymphoma cases in the world. There is also 7% chance that it will go bilateral, which mine did. I received 20 treatments of radiation. I wore contacts and my head was held in a customized mask during treatment. To date there is no presentation of disease.

Most cases of MALT are found in the agricultural areas, thus, it is surmised that chemicals, pesticides etc. maybe associated to the disease. Consequently, I have revised my diet to mostly organic, high antioxidants, filtered water, no saturated fats and no sugar. According to my dietician, sugar is to cancer as gas is to a car. Stevia is a plant grown in Paraguay and is 10-20 times sweeter than sugar in leaf form, and 200-300 times sweeter in powder form. It has medicinal and antioxidant values. It can be bought at health food stores.

Since MALT of the eye is extemely rare, not many eye drs have seen it, and to compound the situation, there are few ocular onocologists. Wills Eye Hospital in Philadelphia (Dr Jerry and Carol Shields) are the leading experts, worldwide, in the disease. You might consider visiting them. I visited them; they confirmed my condition and gave their opinion. It was worth the trip, but my husband and I waited 6 hrs!!, in the examining room (without water or food) before either stepped in to see me, and then I only saw each for about 10 mins. I was examined thoroughly by a dr in fellowship, though. I had many questions which didn't get answered, but they have the best equipment to take very detailed pictures of the eyes, which I requested a copy of for my doctors. The Shields have done a study that followed about 117 patients over about 10 yrs. Results indicate that there can be about a 40-50% that the cancer will present itself elsewhere in the body within the first 5 yrs, so frequent evaluations by an oncologist is necessary. Those with bilateral presentation tend to have higher risks of systemic presentation in 5 yrs.

The conjunctiva is the best part of the eye for MALT to present itself. MALT is very responsive to radiation. My radiologist is Dr. Michael Hunter, and my oncologist is Dr. Carol Van Haelst, both at Evergreen Hospital in Kirkland, WA.

After treatment, I visited Oliver Press at the Seattle Cancer Care Alliance, whom has experience with about 40 patients with MALT of the eye. About 4 were with secondary presentation, the rest were primary presentation. All are alive and free of cancer 12 yrs later, if I remember correctly.

Dr. Press is a lymphoma expert and researcher, as well someone who runs his own practice. He is working on a vaccine for the aggressive form of NHL, but forget which cell, T or B. There are many great therapies out there for indolent (slow growing) B-cell NHL, including antibody therapy.

MALT is very slow growing but can transform into aggressive which tends to be resistent to treatment. All drs. have told me that out of all the NHLs to present with that MALT is the one to get. Maybe so, but I am still living life as if the other shoe is going to drop. I daily check my eyes (10% chance for disease to represent in the eyes). I feel guilty if I don't eat right. I am trying to live as a cancer survivor, but it is hard to grasp mentally.

I just had my 3 month follow-up with my oncologist. Blood work and physical are fine. In Dec I will have another visit with her, blood work, and this time a full body scan, but not sure which technology: PET, CT or combo of both, which I had each back in the spring, along with bone marrow biopsy.

Lymphoma Research Foundation is having its annual forum in WA DC Oct 25-26. Top experts will speak about scan technologies, diet, insurance and there will be break-out sessions for different diseases, too.

It would be great if we could stay in touch. I hope all turns out well for you....odds are in your favor!!</p>

was 24 years old when i was diagnosed with malt lymphoma of the orbit. I had radiation done on both eyes. 3 years after my treatment I got pregnant. Throughout the full nine months of pregnancy my right eye was looking worse & worse. Once I gave birth I had a biopsy done on the right eye. The diagnose was not cancer but granuloma inflamtion. About 2 years after that I started to experience stomach pain so I had done a body ct scan. The outcome was stomach looks good but their was a mass on my right breast. I had to biopsy the breast. The biopsy result is malt lymphoma. My oncologist doesn't want to treat me. He recommends "wait & see". It's been more than a year now that I been diagnose and had no treatment. I have been seeing so many doctors because it is so rare to have this disease at this age. These doctors all have nothing to say. I know how you feel because I fit in your shoe's. I hope to hear back from you soon.

suekdc

rola said:

was 24 years old when i was diagnosed with malt lymphoma of the orbit. I had radiation done on both eyes. 3 years after my treatment I got pregnant. Throughout the full nine months of pregnancy my right eye was looking worse & worse. Once I gave birth I had a biopsy done on the right eye. The diagnose was not cancer but granuloma inflamtion. About 2 years after that I started to experience stomach pain so I had done a body ct scan. The outcome was stomach looks good but their was a mass on my right breast. I had to biopsy the breast. The biopsy result is malt lymphoma. My oncologist doesn't want to treat me. He recommends "wait & see". It's been more than a year now that I been diagnose and had no treatment. I have been seeing so many doctors because it is so rare to have this disease at this age. These doctors all have nothing to say. I know how you feel because I fit in your shoe's. I hope to hear back from you soon.

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

coolbrees

conjunctival MALT
Was misdiagnosed and then finally diagnosed correctly in October 2009 with MALT of the conjunctive. Just finished(3 1/2 weeks ago)radiation therapy. The treatment wasn't bad at all. Just looked like I had taken a beating! )black eye with a lot of swelling) My radiation oncologist told me that the radiation continues to work for about four weeks after treatment is stopped. I'm almost at four weeks and the MALT is much better but still not gone. I'm starting to worry a little bit as he told me (in response to one of my questions) that chemotherpy is the next course of action if this doesn't work. He showed me statistics that show the cure rate is 97% and the chance of recurrence in another place in the body is 30%. ANyone have any experience with radiation involving the eye and how long it took to radicate the MALT?

mccormpa

coolbrees said:

conjunctival MALT
Was misdiagnosed and then finally diagnosed correctly in October 2009 with MALT of the conjunctive. Just finished(3 1/2 weeks ago)radiation therapy. The treatment wasn't bad at all. Just looked like I had taken a beating! )black eye with a lot of swelling) My radiation oncologist told me that the radiation continues to work for about four weeks after treatment is stopped. I'm almost at four weeks and the MALT is much better but still not gone. I'm starting to worry a little bit as he told me (in response to one of my questions) that chemotherpy is the next course of action if this doesn't work. He showed me statistics that show the cure rate is 97% and the chance of recurrence in another place in the body is 30%. ANyone have any experience with radiation involving the eye and how long it took to radicate the MALT?

Radiation for MALT Lymphoma
I had 20 sessions of radiation, last one was January 13, 2010. It did look like someone hit me, with a red circle around my eye for 2 weeks. My eye is still swollen and has conjunctivitis. I go back to see the radiation oncologist a week Monday. I'm not sure what to expect next. Should my eye still be swollen and red inside? When I go back do they do a scan to see if the lymphoma is gone? My doctor is certain that radiation will be all that is needed. I was very confident, until now. I thought my eye would be looking normal by now.

sheropenshaw

mccormpa said:

Radiation for MALT Lymphoma
I had 20 sessions of radiation, last one was January 13, 2010. It did look like someone hit me, with a red circle around my eye for 2 weeks. My eye is still swollen and has conjunctivitis. I go back to see the radiation oncologist a week Monday. I'm not sure what to expect next. Should my eye still be swollen and red inside? When I go back do they do a scan to see if the lymphoma is gone? My doctor is certain that radiation will be all that is needed. I was very confident, until now. I thought my eye would be looking normal by now.

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!

coolbrees

mccormpa said:

Radiation for MALT Lymphoma
I had 20 sessions of radiation, last one was January 13, 2010. It did look like someone hit me, with a red circle around my eye for 2 weeks. My eye is still swollen and has conjunctivitis. I go back to see the radiation oncologist a week Monday. I'm not sure what to expect next. Should my eye still be swollen and red inside? When I go back do they do a scan to see if the lymphoma is gone? My doctor is certain that radiation will be all that is needed. I was very confident, until now. I thought my eye would be looking normal by now.

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!