Anyone else had lymphoma in the eye area?

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 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.

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.

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!

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

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.

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>

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.