CSN Login
Members Online: 3

Anyone else had lymphoma in the eye area?

Teacher03
Posts: 10
Joined: Jan 2003

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
Posts: 4
Joined: Mar 2003

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
Posts: 10
Joined: Jan 2003

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
Posts: 4
Joined: Mar 2003

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
Posts: 10
Joined: Jan 2003

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
Posts: 4
Joined: Mar 2003

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
Posts: 10
Joined: Jan 2003

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
Posts: 4
Joined: Mar 2003

Good for you! Glad you got that worked out.

babastar
Posts: 1
Joined: Apr 2002

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
Posts: 1
Joined: Mar 2003

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
Posts: 5
Joined: Sep 2003

What part of the orbit did the lymphoma appear?

tobiano
Posts: 5
Joined: Sep 2003

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
Posts: 1
Joined: Oct 2003

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.

tobiano
Posts: 5
Joined: Sep 2003

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
Posts: 5
Joined: Sep 2003

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!!

rola
Posts: 3
Joined: May 2005

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
Posts: 2
Joined: Oct 2009

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

rhonna oglesby
Posts: 1
Joined: Mar 2010

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!

your joking
Posts: 4
Joined: Mar 2010

So sorry Rhonna I know how you are feeling we seem to be waiting all the time hope your son will be ok I will say a prayer for him

coolbrees
Posts: 5
Joined: Jan 2010

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
Posts: 1
Joined: Feb 2010

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
Posts: 3
Joined: Feb 2010

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
Posts: 5
Joined: Jan 2010

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
Posts: 5
Joined: Jan 2010

To the best of my understanding this type of lymphoma is rare and no one knows for sure what causes it. It's just one of those unlucky things! This type of lymphoma often occurs bilaterally which explains why you got it in your other eye. What kind of pain are you experiencing? I didn't have any pain with the radiation, only swelling. What was the chemotherapy like? I was told that there are different kinds of chemo and protein (?) therapy available to treat this lymphoma.
This type of lymphoma can also occur in other mucosal sites such as the stomach, throat, etc. What I don't understand is the oncologist told me that some people don't necessarily require treatment if the lymphoma doesn't bother them. It is a very slow growing cancer.
Hang in there and keep us updated on your progress.

coolbrees
Posts: 5
Joined: Jan 2010

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!

sheropenshaw
Posts: 3
Joined: Feb 2010

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
Posts: 5
Joined: Mar 2010

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

coolbrees
Posts: 5
Joined: Jan 2010

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!

VincentC
Posts: 5
Joined: Mar 2010

My oncologist didn't support the idea of additional treatment with doxy but my opthamologist prescribed doxy because I had a mild form of blepharitis. So a got the doxy anyway. The goal of my oncologist was clear by the way: it should be gone 100%, and I believe it is!

I sometimes have the blurry vision too. I found out it's not my lens but my lachrymal gland that is functioning differently. I tried several eye-drops and most of them irritated. Since a couple of weeks I use artificial tears without presarvatives (pipettes for one-time-use only) and so far they are doing the job better than the ones I tried before.

Anyway, I think it's worth to keep searching the internet for new developments, just don't get obsessive about it (I luckily passed that phase). Sometimes you can find very interesting scientific papers about the subject, in whatever language, and the more you read the more you understand.

cahnorth
Posts: 4
Joined: Mar 2010

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.

mapetite
Posts: 1
Joined: Mar 2010

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
Posts: 3
Joined: Feb 2010

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.

cahnorth
Posts: 4
Joined: Mar 2010

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.

cahnorth
Posts: 4
Joined: Mar 2010

Hi mapetite. Best wishes to you, your husband and family during this challenging time. I do not regret having radiation over chemo as chemo is so much harder on our system. The damage to my nerves I view as a unfortunate side effect that could not be predicted or anticipated. Chemo goes through your entire system while radiation is site-specific. Please let us know how your husband makes out and I am sending positive energy your way for successful treatment, which ever he chooses.

your joking
Posts: 4
Joined: Mar 2010

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

your joking
Posts: 4
Joined: Mar 2010

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

VincentC
Posts: 5
Joined: Mar 2010

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

Asiago
Posts: 4
Joined: Aug 2011

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

jammison1998
Posts: 5
Joined: Sep 2011

Can anyone explain what their tumor looked like? when i pull my right eye lid up and back i have a fatty/fleshy mass that pops out. there is no pain but i can feel it at times and it does seem to get bigger.

PirateMo
Posts: 2
Joined: Sep 2011

the doctors thought at first my tumor was a sty. it just wouldn't go away and got bigger and bigger.

PirateMo
Posts: 2
Joined: Sep 2011

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.

VincentC
Posts: 5
Joined: Mar 2010

Hello Joan,

I only now see your message. I'm not frequently visiting the discussion board anymore. Too busy with other stuff. But nonetheless here is my delayed reaction.

First of all, I hope your treatment went well and your recovery also.

I had my RT in september 2009. 2,5 years ago. I'm feeling quite good nowadays. Looking back on it (still fingers crossed) I must say that I recovered quite well. It took about a month or 3, maybe 4, before the discoulouring of my skin disappeared and my eyelashes and eyebrow grew fully back. Nowadays nobody who doesn't know I had RT would see the difference between my two eyes. That's a good thing. The minor negative thing is that my teargland went lazy so occasionaly I have a dry eye, but not even to the point I need eyedrops (I tried them but they usually gave more irritation than comfort). So I consider myself extremely lucky.

I also had special cream for the skin around my eye. This was mainly meant to prevent dry skin and to help to heal the skin. The advice was (to prevent permanent skin discoulouring) not to expose the skin to the sun for a long period of time. So I bought big sunglasses with a good filter. Maybe that helped, maybe I'm just lucky, maybe the weather in the Netherlands is just bad...

I had no follow-up treatments. Every 3 or 4 months I have a check-up. This doesn't go any further than physically examining my lymph glands. Last summer there was a bit of a panic because my neck was swollen. So I had a scan and blood examination. False alarm. It was a result of a car crash I had 2 months before (of which I also recovered by the way).

The hardest thing (and I am not complaining, don't get me wrong) was the fatigue that lasted for more than a year after the RT. As I said, the external recovery was good and fast, but this could not be said about my overall physical condition. I really underestimated this. I started going back to work within 2 months after my last RT session. Looking back, this was way to fast.

Well, if you read this, I wish you all the good luck you need. I'll try to check the discussion board more frequently.

best wishes,
Vincent

chuanlw
Posts: 4
Joined: Nov 2011

I'm newly diagnosed with extranodal non-Hodgkins lymphoma on my right eye. I have done the operation to remove the mass 2.5 years ago (Jun 2009). 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. Hematologist advising me to proceed with the radio therapy and chemo. However, due to that time, I am planning for my children, thus I decided to wait and monitor and do not proceed with any further treatment on it.

But recently the mass come back again. My eye doctor doesn't plan to do any more surgery than he already has - a biopsy - and advise me to go for the treatment (radio + Chemo). I am so "reluctant" and "worried" on that. I am not sure whether the treatment will further cost the lymphoma to spread to other portion of the body.

What should I do??? :((

chuanlw
Posts: 4
Joined: Nov 2011

Is Radio Therapy enough to treat non-Hodgkins lymphoma on my right eye or we need both Chemo + RT?
I am really worried on the Chemo, it basically killed off all my cell and breakdown my immune system.

Could some one please help to advise?

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

If you haven't seen your oncologist in 2.5 years, then I would suggest that you start there. You never know what protocols may have changed during that time period. Please call for an oncology consult.

Best of luck,
Kellie

chuanlw
Posts: 4
Joined: Nov 2011

Yeah ... I have make the appointment.
But my understanding is we for this type of lymphoma, we should visit hematologist instead of the oncologist? Because is more on the blood related type. Hope can hear from you soon.

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

Hello chuanlw,

Lymphoma is a blood type cancer. Many doctors are certified in both hematology and oncology. Regarding hematologist vs oncologist, I found this on the web:

(American Society of Hematology
Q&A with Dr. Kenneth Kaushansky, 2008 ASH President
A Career in Hematology)

Q: What is the difference between hematology and oncology?

Dr. Kaushansky: These two fields are closely related, with oncology growing out of the field of hematology. Oncology is the study of all cancers, including what are termed “solid tumors,” such as lung cancer, breast cancer, or colon cancer. Hematology is the study of blood diseases. This includes non-cancerous disorders, such as anemia and blood clotting problems, but hematologists also treat a number of cancers of the blood and bone marrow, such as leukemia, lymphoma, and myeloma. So there is some overlap between the two. In fact, many doctors go through a combined hematology/oncology training program and are board certified to practice both.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1217
Joined: May 2012

Ergo, oncology generally is a bit broader in scope than hematology. The Group where I am treated (27 doctors) describes most of the non-radiation oncologists as "Medical Oncologists," perhaps to further muddy the waters.

Virtually all (or perhaps every one) is board certified also in Internal Medicine, as well as their oncology specialization. My doc is also Board certifed in geriatrics (three certifications), but decided to leave that specialization shortly after passing the Boards.

Small world: He was a Naval officer teaching Nuclear Power sailors when I was in Orlando at Naval Training Center there (since closed down).

max

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

Sorry this took so long. My oncologist is also a hematologist, an endocrinologist and a rhumatologist. She's got all of the blood cancers and most of the autoimmune diseases covered in her Fellowships.

I relapsed a month a go and am now being followed by a transplant team for an autologous stem cell transplant. I am currently in the hospital, just completed day one of my first round, out of three of RICE. In October 2010, when my tests showed NED, my body continued to feel "off" with extreme sudden fatigue, horrible pain which required more non and narcotic analgesia than when I showed active uptake of my LBCNHL. But, I tried to adjust to my so called new normal. My oncologist informed me that it just takes longer for some of us to get our energy back. I now say that your new normal, may be that the disease is actually still somewhere in your body; you just really don't know 100%. Do not take any days for granted. Continue with all follow up testing. Most importantly, if you still do not feel like you are beginning to have more good days out balance the poor days, do continue to let your doctors know. Someone will find something it indeed it is still there

Feel better all,
Kellie
LBCNHL IV-B 6/2010 6 rounds R-CHOP= ned as of 10/2010
Relapse: LBCNHL IV-B ; plan 3 rounds RICE followed by harvesting and transplanting of my stem cells ( autologuos stem cell transplant).

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

Welcome chuanlw,

I'm sorry you have to be here but you
have found a good place - you'll find many wonderful and supportive people here.

The thought of chemo is very scary but most of us here have
gone through it successfully. It does breakdown your immune system and there are side
effects. The side effects are very individual - some people have many
whereas others have almost none from the chemo. I was fortunate that
I had very few side effects and the ones I experienced were tolerable.

Today, they have so many options to control and prevent side effects so it's
not like it was several years ago. Regarding the immune system, the
weakened immune system is temporary after treatment. Shortly after a cycle
is complete, they give you a medication to build back your immune blood counts
(bone marrow). There is usually a period of time (a few days in my case) where
you are very vulnerable because your blood counts are low. During this time
you have to avoid crowds, sick people and basically raw/uncooked foods.

The first couple of cycles of chemo are difficult as you don't know what to expect
and how your body is going to react. By cycle 3 or 4, it's more routine and less
frightening. I won't lie - it's no fun - but the results are worth it for most
people.

Unfortunately, I don't have experience with radiation therapy so I am not
speaking on that. Hopefully others will respond on that topic.

There are many success stories here on this site where people have been cured
and/or have been in remission for years. There is hope!

You are not alone in your fear and you are very welcome here at this site.

Hugs and warm and positive thoughts,

Jim

chuanlw
Posts: 4
Joined: Nov 2011

Thanks Jim,

I feel a little bit comfortable after seeing your reply.
But I told myself I want to be getting better. So, if the treatment is needed, I definitely will go for it.
I will keep posted and update you all my status. Hope everything get well ...

Cheers!

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network