Sjogren's with MALT lymphoma

[bb2811]

Hi - I've been using this site as a useful tool over last 12 months since I was diagnosed.  It hasn't been easy adapting going from one specialist to the next to sort out my dry eyes and aches and pains but I'm getting there and the positive stories here have helped keep my chin up!
On top of the Sjogren's I recently got diagnosed with MALT lymphoma in my left parotid saliva gland - I'm glad my rheumey took the time to check out a not so big lymph node - I'm starting radiation soon - I was just wondering if any other members have had a similar diagnosis and how they went with it all. The haematologist and rheuma are coming up with a plan for either methotrexate or rituxamab post radiation - I'm on low dose planquinil at the moment - my eyes and aches have improved but my bloods and scans show I still have a lot of inflammation.
Would love to hear about others experience with lymphoma.
Anna

[LadyDi]

Hi Anna,

My mother was diagnosed with lymphoma in her parotid gland several years ago and has been doing quite well (considering) since then. She was never formally diagnosed with Sjogrens, however, when I look back to before she was diagnosed, I remember her complaining of dry eyes and her eyes being so red and bloodshot. She now has extremely dry mouth which she attributes to the radiation treatments for the lymphoma.

I really believe that my mother suffered from Sjogren's before the cancer, but was never formally diagnosed. Several years later, here I am with a formal diagnosis of Sjogren's. I have stage 2 lymph nodes in my neck, which my primary care is following by MRI. He is aware of my mother's lymphoma because he is her primary care doc as well. He is also aware of the connection between MALT lymphomas and Sjogren's.

Sjogren's was basically unheard of 20 years ago. My mother caught her lymphoma (stage I) early, so she has done very well with chemo and radiation treatments and has been in remission for several years. As far as a diagnosis for Sjogren's, she is 79yrs old and just lives day to day greatful to be in remission from lymphoma. She is happy and does not want to investigate further to see if she is positive for Sjogren's.

I hope that I was able to be of some help to you.
Best of luck with your treatment & keep us posted with your progress!

[Cheryl]

Hi Anna!
I'm sorry to hear that you have a new dx of Malt lymphoma.   There are lots of us lymphoma survivors in here, so I'm sure you'll get some good support.   My own lymphoma was not Malt.  Best wishes for good results from your treatment!
Cheryl

[irish]

LadyDi, I just wanted to mention that when I was in nurses training from 1961-1964, one of my textbooks had a small section on Sjogrens and I had remembered that disease for all these years. It was heard of but was supposed to be just the dry eyes, nose, mouth, etc and was considered more common in people with rheumatoid arthritis.

I have a neighbor lady who had been ill with all these strange symptoms for many, many years. Later on she was diagnosed with rheumatoid arthritis and with sjogrens. The interesting thing is that she could never sleep. She had the worst insomnia and tried every drug under the sun for it. She is also a nurse and she usually worked the evening or night shifts since she was awake then anyway.

She also had the reflux and gastritis/stomach intestinal stuff that bothered her for at least these past 40 years. I was having so many symptoms all those years also and we would talk often, but the name of her condition wasn't mentioned for years. I did not get diagnosed until 2003 after having symptoms since around 1963. I know 3 otherh people in my area who have sjogrens also. The disease with the dryness has been around for a long time, but the seriousness of the disease and the amount of the body involvement has been more understood in probably the last 10 years. Since I was diagnosed there has been an enormous amount learned despite no real cure. Irish

[susanep]

Hello Anna,

I also am sorry to hear you have this diagnosis. I will be praying for you to get well, and feel much better. Everyone is here for you.

susanep

[bb2811]

Thanks everyone - it's good to hear of similar stories and that people got through it - I'm still surprised about how easily docs and friends etc can understand about the lymphoma but sjogrens is still such a mystery! I wish I had a dollar for every time I've said "I've got the same autoimmune condition as Venus Williams!"

[LadyDi]

Irish,

I'm glad that the medical profession is at least (starting) to recognize and diagnose Sjogren's, as well as realizing an individuals increased chance of developing lymphoma.

I had an appointment last week with my opthamologist, because of course she is watching my retinas due to my being on Plaquenil. She made a comment about how many people that she believes are out there going undiagnosed with Sjogren's. She also made a remark that doctors just think these people are "crazy."

I know that I have had this for several years as well and it took me forever to get this diagnosis.

Thanks for sharing!

[Skylar]

Anna, I have no experience with MALT lymphoma, but I do want to say you are so lucky your Dr. investigated and you're getting treated.