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Just diagnosed yesterday with "Marginal Zone" Lymphoma

searchingtom
Posts: 7
Joined: Oct 2010

Just diagnosed yesterday.

A year ago I started having a burning sensation in both of my eyes. I was treated for dry eyes and then 5 months into treatment I started having double vision. They did a CT scan and found a 2.8 cm tumor behind my left eye. A biopsy was performed and it was confirmed as lymphoma.

Yesterday I was told that I had "marginal zone" lymphoma, and indolent straing that has a 5-10% risk of transformation over time. They found 5-10% infiltration of the bad cells in the bone marrow so they are calling it stage IV, although they are saying for marginal zone lymphoma that the staging is not really that applicable.

I also had a full body scan that revealed that my spllen is about 20% enlarged. Blood work is normal and the lymph nodes are normal at this point.

They are telling me I can live a long time with this disease (some have lived 25 years they said).

They also told me that this is like having a chronic disease. That I would be in for treatment off and on the rest of my life.

I was wondering if anyone else has been diagnosed with "marginal zone" or a similar indolent type of lymphoma and can tell me if the information above sounds correct.

Thanks !

searchingtom

miss maggie
Posts: 929
Joined: Mar 2010

Hello,

Welcome. You have come to the right place. My knowledge is limited. But, there are so many wonderful people on this board that can help you more than me.

I was DX in Sept 2009 when my small bowel perforated. I had an operation to have my small bowel resected. My DX is Marginal, stage 1, low grade, B Cell NHL of the small bowel. I have an app't with my oncologist this monday, nov 1. I will ask her my sub type. I had a bone marrow biopsy end of oct 2009, negative. I have had 2 pet scans, the last one in June 2010 negative, and a colonscopy in june 2010 negative also. I did have treatment of Rituxan once weekly for 4 weeks in dec 2009.

I think the information they gave you is correct. Staging is not important, and yes it is chronic, but treatable. Yes, it can transform. Probably will be treated for the rest of our lives.

I see you found out you DX yesterday oct 29. You are ready to find out all the info you can. Good for you. I was such a mess and was depressed for at least 2 weeks. I couldn't function.

I am sure you will receive other posts that will add further info.

Maggie

onlytoday's picture
onlytoday
Posts: 587
Joined: Jun 2010

Hi,

I was diagnosed with Nodal marginal zone indolent b cell lymphoma, grade 1 stage iv on May 27, 2010. I had lymph node and bone marrow involvement. Had 4 weeks of Rituxan in September. Still waiting for testing to be completed to find out how well that worked.

I know that you are overwhelmed right now, but you are in the right place. We all hang out here together and help eachother thru this. You were given accurate info as far as I know; it is a chronic condition that will be with you in varying degrees for the rest of your life. This crazy cancer is not a death sentence. It is actually chronic (which I never heard of before I was diagnosed). It takes awhile to get that in your head. Strange. But the scientific community is making HUGE strides with research so we are all optimistic. Who knows when a cure may come??!!

The best to you you! Please stay in touch with us and keep asking questions. We'll do our best to help in any way we can. If one doesn't know, someone else might have the right answer for you! God Bless!

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

I hate that you have to be here, but glad you found us. I don't have marginal, but I am follicular indolent. I am on my third time with this stuff, hopefully this last treatment with rituxan will keep me in remission for a very long time. I agree, this is chronic but treatable. When I went from stage 1 to stage 3 my onc didn't seem concerned, and I was told staging really doesn't matter with lymphoma, even though it seems to matter to me. I don't have bone marrow involvement, at least not yet.

The worst part of all this to me is the waiting for testing, dianosis, more tests, scans, results etc. Have they scheduled an appointment with an oncologist yet?

Good luck to you my friend,
Take care,
Beth

LPL/MALT/Follicular stage 3 (4/7/2006)

maustin
Posts: 3
Joined: Jan 2011

I was diagnosed in june of '09 with low grade b-cell marginal zone. I have a very rare form of this already rare cancer. Mine is subcutaneous, I had 12 tumors in my fatty tissue in my chest,back,stomach and groin. I am on wait and see, though 2 of my largest tumors were removed before they knew it was lymphoma. Within 3 months they grew back almost to their original size. I didn't believe that what i had was indolent or low grade but I had pathology done at NIH, mayo, sloan-k, my own hospital in bethlehem pa, and UPENN and they all agreed. I started acupuncture to handle the stress but my tumors responded to the acupuncture and 7 months later I am tumor free. Some people said it was the natural waxing and waning of marginal zone lymphoma but I'll hold to the belief that for $60/week I can stay tumor free.

onlytoday's picture
onlytoday
Posts: 587
Joined: Jun 2010

Wow! That is fantastic! The only experience that I had with acupuncture was for sciatica and that was like a miracle it worked so well. Hey if you are getting results like this I think that I may need to check it out! Right now I'm lucky in that I am in remission following treatment with Rituximab.My diagnosis is Marginal Zone Lymphoma. Maybe I should go for acupunture treatment now and ward it off!! I think I will... Thank you so much for sharing and all the best to you!
Donna

Nonna325
Posts: 3
Joined: Feb 2011

I was diagnosed with small B cell MALT conjunctival lymphoma in both eyes. My opthalmologist discovered it during a regular annual eye exam. He sent me for biopsy at Duke Eye Center and they confirmed the diagnosis. I've had staging and it is only Stage IE so I am very lucky. I will be having 12 radiation sessions starting either late Feb or early Mar. I will have to continue working during this but I've been told it shouldn't be a problem. Would love some encouragement from anyone who has undergone radiation to the eyes.

searchingtom
Posts: 7
Joined: Oct 2010

In November (2010) I had 13 sessions of 30 gray in my left eye for a 2.3 cm mass assymetric to the optic nerve. I will have an MRI this Friday to see what is going on with the mass. I can tell it is significantly better because most of my double vision had disappeared as well as the proptosis (bulging).

The radiation treatments were a breeze as I had no symptoms at all. I have marginzal zone small B and it is in my bone marrow. Right now I am on watch and wait.

Please keep me posted on your progress and feel free to ask me any questions.

searchingtom (tom)

Nonna325
Posts: 3
Joined: Feb 2011

Thanks for the support. I have such a mild case that I feel guilty hearing all the difficulties you folks are going through. I just have a "heavy achiness" in my eyes. It was caught so early that the only spread may be infiltration of the right upper eyelid. Otherwise I am fine. Looking forward to getting the radiation done so I can stop thinking about this. I go on the 16th to have the mask made for my treatments. They are doing full orbits of both eyes for 12 treatments. I'll keep you informed how it goes.

Thanks again. Nonna (means Grandmother in Italian, in case anyone wonders).

Mtnman729
Posts: 3
Joined: Jul 2012

Hello friends - my husband Will was just diagnosed with low grade B-cell conjunctival lymphoma in one eye; much of the orbit is now involved and it has now spread to the other eye. PET/CT scan clear, thank God, but waiting for head MRI results and probable surgery date. So how does it spread between eyes? Optic nerve? Slightly freaking out and getting ahead of ourselves - any similar experiences? Thanks - Leslie

ttinker
Posts: 1
Joined: Feb 2011

I was diagnosed in DEC.2010 with b-cell marginal zone with positive T-cells tissue type - on my skin (malt). Not only is this very rare it was also very rare to have it on my face. I just completed radiation therapy (18 treatments). When I asked for more info on this type of cancer he said that only about 100 people have it in the US and there is not much info. Is there anybody out there that has this and knows more information on this. Thanks! I am looking forward to being on this discussion board to connect with other lymphoma cases.

Tonya

onlytoday's picture
onlytoday
Posts: 587
Joined: Jun 2010

Hi,

I have never heard of Malt being on the skin, I thought it was only in the stomach! What symptoms did you have? How are you since the radiation? I am getting re-biopsied for Malt in my stomach next week. I do have Marginal Zone, Stage IV in my lymph nodes of groin and in the bone marrow

Donna

Nonna325
Posts: 3
Joined: Feb 2011

I am just updating. I go for my 5th of 12 radiation treatments this evening and they are going very well. Dryness of the eyes set in big time this weekend but I was expecting it. I can say that this treatment is a breeze. There is no discomfort during the sessions, which only last about 10 minutes, including placement, etc. My husband teases me as we drive 1 hour to the center, have a 10 min. session and drive an hour home after working all day. He says he can drop me off, use the men's room and when he comes out I'm ready to leave.

I just want to let others know that this is very easy to take and that I know I'm lucky. Sure hope you others with antigen and chemo are doing well. So sorry to hear the stories of discomfort and side effects. Hang in there. We are a special bunch and have the strength to make it and show others that it can be done with grace and patience.

Nonna

Me_Too's picture
Me_Too
Posts: 1
Joined: Jan 2013

A couple months ago my supervisor put pressure on me to get more aggressive medical help to reduce my absences for disabelling headaches. Talk about backfiring .....

The long and short of my doctor trip was that after many many more absences, I have been diagnosed with Marginal Zone Lymphoma. Stage 4. First doctor said "We'll start intensive monoclonal antibody treatment immediately !", but I had no transport and the side effects would have made me an unsafe driver. So I carefully found a well thought of closer doc, who said basically "Hummmm....how about you do .... nothing, oh and by the way you are stage 4". When I couldn't wrap my mind around these difering reccomendations Doc 2 sent me to a famous hospital with a specialist in my exact form of lymphoma. After two months of holding my breath and daily prayers Id make it to the appointment, and 2 flare episodes that left me unable to lower my arms or turn my head much (because of the swelling in the lymph nodes under my arm and neck), and absolutely mind boggling fatigue (I have no idea how I ever managed to get up to go to work, it was like a constant flu, my sick days got used up and life started seeming pretty unappealling:wwworry and sleep, worry and work, collapse, barely drag myself to work enough to keep my insurance ... for now) I finally made it to the appointment with the specialist.

Who remarked that it must be frustrating to have no game plan and golly he couldnt say if I should get the could kill me monoclonal antibody or watch and wait, not that he was making a call one way or the other, understand.....Gahhhhh. I've read a whole lot since that first doctor's diagnosis and it was very clear that the specialist had strongly made up his mind from before he ever saw me- could have saved myself a long drive and time away from rest. I guess I'm what some would call very early middle age and he was cheerfully telling me that there was good reason to believe that I had the possibility of dying of something else if I was lucky. My bone marrow biopsy had been clearly positive, my lab work is clearly positive, I told him of the times my arms wouldn't go down, but he said all was sunshine and roses because (basically) even if he DID believe my symptoms (wipe-out fatigue and node swelling) he still would reccomend we wait and watch till there were symptoms. What??? I don't consider the glorious prospect that maybe I'lll be lucky and something else will kill me in the next (his estimate of my anticipated lifespan if my luck holds) 8 years.

Lately I've been having a really odd visual disturbance. Its hard to describe, kind of like a very faint hazy net design was over everything- kind of like the way vision changes just before you pass out (if you've ever had that happen). I'm really sure that if I can't see I can't work, and if I can't work but my doc says "No reason for it" I can't get disability, and that if I can't get disability or work I can't get insurance so Rituxan would be beyoooond me even if they decided they were willing (again) to prescribe it. And I have no idea who to believe, maybe it would be more harm than good.

Frustrating disease, real scary future, and realllllllll fatigued "now". So: Thanks for listening. I don't thikn anyone who doesn't have NHL has the least idea what its like to live this.

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

I do not have Marginal zone, but I do have Follicular type. I do not know a lot about your type.There are so many different types of Lymphoma out there. As far as your Drs. they,in my opinion should get their heads out of their asses. I would really recommend seeing a real Lymphoma specialist. You did say these Drs. were lymphoma specialists. I believe you said they were just recommended. I really wonder about some of these so called specialist sometimes. Put the word specialist in front of someones name and the price doubles. People on this site can surely direct you in the right direction.  I will recommend staying away from the Websites or you will become confused. It sounds as though those Drs. have been reading the stats on those Websites. Thats exactly what they are...STATS ONLY !!!. You are not a stat,but an individual person. You do not need stats and anxiety right now. You need treatment. Don't mean to sound so blunt, but it's coming straight from the heart. John

GKH
Posts: 302
Joined: Jul 2012

Do you mind saying what area of the country you live in?

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