Anyone else had lymphoma in the eye area?

chuanlw

I'm newly diagnosed with
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

chuanlw said:

I'm newly diagnosed with
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??? (

Please help! Chemo or not???
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

chuanlw said:

Please help! Chemo or not???
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?

If you haven't seen your
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

KC13167 said:

If you haven't seen your
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

Yeah ... I have make the
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

chuanlw said:

Yeah ... I have make the
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.

What is the difference between hematology and oncology?
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.

jimwins

chuanlw said:

Please help! Chemo or not???
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?

Chemo or not?
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

jimwins said:

Chemo or not?
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

Chemo or not?
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!

KC13167

chuanlw said:

Yeah ... I have make the
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.

Hematologist...
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).

VincentC

Asiago said:

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

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

Thanks, Joan

Late reaction to Joan
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

VincentC

chuanlw said:

Chemo or not?
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!

New article in Journal of Clinical Oncology
For what's it worth:

http://jco.ascopubs.org/content/early/2012/07/16/JCO.2011.41.4466.abstract

"Chlamydophila Psittaci Eradication With Doxycycline As First-Line Targeted Therapy for Ocular Adnexae Lymphoma: Final Results of an International Phase II Trial"

Best regards,

Vincent

Max Former Hodgkins Stage 3

jimwins said:

What is the difference between hematology and oncology?
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.

A rose by any other name...

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

IN_Denial

Please give us an Update

I have been following the discussion you generated 10 years ago about your lymphoma.  I hope you are doing well.

It has been helpful reading these posts as I have been struggling with my recent diagnosis. I hope to hear from others and get some words of encouragement.

I plan on having radiation and then chemo within the next few weeks and pray that the side effects of the treatments are not worse than my symptoms.

SharonDeLuce1948

jammison1998 said:

large mass in right eye?
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.

mined looked like a pink mass

mined looked like a pink mass growing out from under my right eye......it felt like i had dry eye 

MadameDi

MALT lymphoma - lacrimal gland - looking for support

Hello everyone,

Friday June 2nd, I was told that I have possibly MALT lymphoma on lacrimal gland, right eye. Next week, I will find more about staging and localisation. It is very scary and cannot find rest. I heard about radiotion therapy if the tumor is localised, or chemo if it is spread. Right now I am so scared that I will not manage to see growing my 2.5 years old son, that I will not manage to have a normal relationship with my husband. Waiting period over the past weeks has been very hard, and still. I cannot make any sense of what is going on, how I can rebalance my life, to have a new normal. I do not know what normality is. Not anymore. This is also after having other problems over the past year (loss of advanced pregnancies).

I am a beliver in God, trying to understand what is happening, what is the purpose of going through this. i cannot stop anking 'Why?'. I cannot accept yet.  I pray that I will reach to have peace over the situation, and preserve my energy for the treatment.

Do you have any tips on how to best deal with the waiting period (until clarity), but also during the treatment?

Thank you,

MadameDi

 

MadameDi

VincentC said:

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

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

Good luck to you all!

Vincent
Amsterdam - Netherlands

Hi Vincent,

Hi Vincent,

I am also living in the Netherlands. I would like to hear from you about your treatment, where it it take place, how was, how did feel after.

And most important, how do you feel now.

Thanks.

MD

Max Former Hodgkins Stage 3

MALT

M,

MALT/Eye lymphoma involvement is rare, but there have been a few here with it over the last several years. One was the avitar "almost60," but she quit writing about 2 years ago. Many of her friends still here wish she would check in on occasion.

As to "why me" ?  The answers fall mostly into 2 general ranges.   1. For religious believers, it is usually addressed as a mystery or unknown.  2. For persons who deny any view of the supernatural, the answer (logically) must be that the occurence is essentially random, whether genetic or physiology, or whatever.  It has then no "purpose," unless it be some purpose the patient themselves confers to it.

My thought on the "why me?" question has always been, "Why would it not be me ?"   And: Would it be better for it to be the guy next door? The guy at work ?  How "religious" are those views ?

Whether religious or non-religious, all people are born some day to endure disease, decline, sadnesses, tragedy, and some day, the end.  The poor souls murdered on London Bridge yesterday: probably all were affluent, world-travellers.  The thousands in the World Trade Towers when they went down: Mostly the rich, the movers and shakers, people who ruled the financial world (not all, but most). Wealth, fame, protect no person at all.   Tragedy at some point arrives for all.  But life can still be joyous and full of purpose for most individuals.

The rest is all timing, which we do have difficulty understanding.  Comedians say their art is "all timing in delivery." So too in tragedy. I hope you discover some form of peace, and move forward from this trial,

max

po18guy

MadameDi said:

MALT lymphoma - lacrimal gland - looking for support

Hello everyone,

Friday June 2nd, I was told that I have possibly MALT lymphoma on lacrimal gland, right eye. Next week, I will find more about staging and localisation. It is very scary and cannot find rest. I heard about radiotion therapy if the tumor is localised, or chemo if it is spread. Right now I am so scared that I will not manage to see growing my 2.5 years old son, that I will not manage to have a normal relationship with my husband. Waiting period over the past weeks has been very hard, and still. I cannot make any sense of what is going on, how I can rebalance my life, to have a new normal. I do not know what normality is. Not anymore. This is also after having other problems over the past year (loss of advanced pregnancies).

I am a beliver in God, trying to understand what is happening, what is the purpose of going through this. i cannot stop anking 'Why?'. I cannot accept yet.  I pray that I will reach to have peace over the situation, and preserve my energy for the treatment.

Do you have any tips on how to best deal with the waiting period (until clarity), but also during the treatment?

Thank you,

MadameDi

 

Allow time for the shock to wear off

Even if you do have it, MALT is a slow-growing, chronic disease. It is considered to be a manageable illness, similar to autoimmune conditions or various degenerative diseases. It is not in any way an immediate threat to your life. Treatment is well established, is constantly improving and outcomes are better than ever. Here is a link to an information page regarding MALT. 

As to making sense of it: Do any of the recent headlines make sense? Tragedy and suffering are universal human experiences. They cannot be avoided. How we respond to such is within our control. Many who are younger and healthier than us have had their lives interrupted or cut short by tragedy and suffering. In comparison to them, we have nothing to complain about, even though we remain shocked by this sudden change in our lives. 

Was it our expectations of life which were unresonable? Are we little more than a table tennis ball that is tossed about by external forces? Not at all. In my case, I was prepared for and have been well equiped to deal with cancer. I have not once asked the normal "why me?" that is almmost expected. I have not once wondered if all of this was "fair."

Truly, if life was fair, every living human would have cancer - thus, I do not want life to be fair. This journey has been chosen for me and I, in return, choose to embrace it. I live, not for this life, but for the next, which I believe never ends. This life is transient, and I consider myself to be a pilgrim, an exile if you will, on this earth. Knowing that, the end of all of this misery is perceivable, if not yet in clear view. I find comfort in that.

My struggle has helped others and that, if pondered, can be reward enough.

Jen316

Concerned lymphoma eye

Hello everyone, 

I want to first say that I have not been diagnosed but have all sorts of eye symptoms and am wondering if anyone could give me some input.  It all started nine months ago when my eyelid swelled up.  I didn't think anything of it and took a Benadryl.  Then I noticed it would swell up monthly.  Now it swells up biweekly, both eyes now, and I have swelling all around both eyes.  In the past month, I have noticed significant floaters.  I have been to my general practitioner probably 10 times, an allergist, an ENT and had a sinus CT, an opthalmologist who dilated my eyes and says he sees nothing.  My diagnosis is idiopathic angioedema, which is basically swelling with unknown cause.  I'm not comfortable with that and was wondering what your experiences have been.  I hope I'm not offending anyone as I have not been diagnosed and pray for all of you.  I guess I have concerns and was looking for some input.  I don't know where to turn.  Not to mention I have neck pain.

 Thank you from the bottom of my heart for reading this And God bless you all!

 

Jen❤️

po18guy

Jen316 said:

Concerned lymphoma eye

Hello everyone, 

I want to first say that I have not been diagnosed but have all sorts of eye symptoms and am wondering if anyone could give me some input.  It all started nine months ago when my eyelid swelled up.  I didn't think anything of it and took a Benadryl.  Then I noticed it would swell up monthly.  Now it swells up biweekly, both eyes now, and I have swelling all around both eyes.  In the past month, I have noticed significant floaters.  I have been to my general practitioner probably 10 times, an allergist, an ENT and had a sinus CT, an opthalmologist who dilated my eyes and says he sees nothing.  My diagnosis is idiopathic angioedema, which is basically swelling with unknown cause.  I'm not comfortable with that and was wondering what your experiences have been.  I hope I'm not offending anyone as I have not been diagnosed and pray for all of you.  I guess I have concerns and was looking for some input.  I don't know where to turn.  Not to mention I have neck pain.

 Thank you from the bottom of my heart for reading this And God bless you all!

 

Jen❤️

Does not call lymphoma to mind

Have you had the autoimmune panel run? All inflammation is controlled by your immune system. Do you have psoriasis, eczema, arthritis, lupus, Crohn's or any other autoimmune condition?

Jen316

I do have excema.  Thank you.

I do have excema.  Thank you.  Maybe I will go back to the doctor and have them run that.  I did have a CBC which was normal.  

Jen