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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

jimwins's picture
jimwins
Posts: 2111
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!

VincentC
Posts: 5
Joined: Mar 2010

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

IN_Denial
Posts: 1
Joined: Jun 2013

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.

MadameDi
Posts: 2
Joined: Jun 2017

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

 

po18guy's picture
po18guy
Posts: 567
Joined: Nov 2011

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.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2412
Joined: May 2012

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

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