lymphoma

[jstroble]

Hi everyone

I just joined today.  I  would like to know if anyone has had a lymphoma in his or her parotid gland from the Sjogren's.  I had my left parotid removed in 2002 and had some radiation.  Side effects of that were horrible.  Now I just discovered a lump in my right parotid and I am in the middle of a meltdown.  Has anyone else had this happen? If so, I would like suggestions on how to deal with no saliva.     I didn't even know I had Sjogren's until I got lymphoma.  I also have 3 other autoimmune diseases  and am being evaluated for myasthenia gravis now.  The worst one is polymyositis which causes very weak and inflamed muscles.  I am unable to go up stairs or get out of a chair without great effort and using my arms to push myself up.  Don't mean to whine, just trying to explain where I am coming from.  I usually deal withd things pretty well and 2 major problems at one time is a little hard.  Anyone who stayed to the end of this long message - Thanks.  Joyce

[lynnmarie219]

Hi Joyce and Welcome to Sjogrens World!

Don't ever feel like you are whining here...this is a place to come and vent, learn, have fun, and make friends.

I have not personally had to deal with lymphoma and I'm so sorry that you are having to deal with so many issues all at once....I'm sure that others will come along soon with more advice on this than I can offer.

I just want to assure you that you are always welcome to vent and get things off of your chest here....and we are always here to listen and help each other in any way we can!

[Joe S.]

go ahead and vent (whine) all you want. I have to believe that we all have been there.

You may try listening to some tones http://www.chakraforce.com/Tonations.html#178.

[louise]

Joyce , so sorry to hear about your troubles. Please don't feel like you are whining. I can understand needing to vent. Everyone here has done their share I'm sure .This site is here for that. I have had lots of pain and swelling in my patriod gland.No cancer yet thank God. I'm sure my mouth is not as dry as yours but it is a real pain. Gum sugarless candies, salagen and water are the most help for me. Good luck .

[Scottietottie]

Hi Joyce 

Welcome to Sjogren's world.

Too often autoimmune diseases travel in packs. I'm sorry to hear you have 3 already. Sounds painful too.

I know that people with Sjogren's run a higher risk of lymphoma but it's possible to have a swollen parotid and not have lymphoma - so have you had it checked out?? Got to be possible it's inflammation, which can be treated without removal.

Take care - Scottie   

[Pisces24]

The parotid gland can have a blockage too that causes it to swell,  I had a dr mention to me if the 2nd round of antibiotics didn't work they would "flush" the gland. My gp said you can get something there that blocks it and causes it to back up and swell.

Did you try moist heat on that gland?

[Cheryl]

Joyce,
  I can imagine your fear and dismay.   Please know that a lot of Sjogren's patients have swollen parotids without lymphoma.   I hope you get a biopsy soon, so that you will know it is OK.   Please let us know about it.
  I am a lymphoma survivor, too (although mine was abdominal.)  I will pray that this is just a false alarm.
Cheryl

[jstroble]

Hi everyone

Thank you all for your kind and helpful comments.  I feel hugged this morning.  I have an appointment to see the doctor on Monday about the lump.  I have wondered if it could be inflammation but it doesn't hurt or cause pain when I eat.  It is very hard to the touch.  I am hoping you all are right and it is just something benign, but I am preparing for the worst.

I am still getting used to this forum and how it works. I'm not exactly computer literate. My husband, son and daughter-in-law are all computer professionals and then there is me.

Again, thanks for being here for me.

Joyce

[Chickpea]

Hi Joyce

Good to meet you.  I'm so sorry to hear that you're having such a worrying time.  Let us know what the doctor says on Monday.

You're in our thoughts - Chickpea

[Joy Cox]

Hi Joyce,

Late getting to this thread, as it is called here on SWorld. My name is Joy and I'm in East TN. I barely escaped malignancy of my upper R parathyroid gland; large tumor attached and had spread to nearby gland at 65. I was one of the lucky ones... got it just in time. Continue to be monitored by Duke Endocrinologist every 6 months. When we come to Duke, it is 300 miles one way.

At Duke Med. Ctr. in Durham, NC, I see a rheumy and other specialists. Where are you located in NC? 

Eyes seem to be my biggest problem though other Sjoggies gifts are coming my way... as does also seem to be your case.

Did you try warm compress to parotid as suggested? I massage mine often with Vicks and even apply up behind ear. Mine seems to run from front of ear along jaw line like mumps. Where is your lump located this time?

Have had R parotid gland problems for years. Just cannot seem to get my local ENT to address it from the Sjogren's involvement.

Have been on antibiotic since mid Dec. and continue on them for what is diagnosed as bronchitis and now after 15 days more of treatment have been left on antibiotics and put on Symbicort inhaler that is for both bronchitis and asthma.

When your parotid gland swells do you have infected sinuses and have any upper respiratory problems? Another question, do you have any lung involvement?

Looking forward to hearing how your appointment goes on Monday. Give a (((((shout))))) as to what doc says.   

[jstroble]

Hi Joy and all who read this

I do not have lung involvement.  This is the first time I have had anything  in my right parotid.  I haven't used heat cause it doesn't hurt.  Should I do it anyway? I am starting to think you all are right, that it may be inflammation. Today it seems smaller although I can't imagine why.  I will see the doctor tomorrow. 

I live in Greensboro, NC.  I go to Duke also which is  a little over an hour from my house.  Wow, you have much further to go.  Are you in NC also?  I see Dr. St. Clair there who is a rheumatologist but  well-known for treating Sjogren's.  He also treats my other auotimmune diseases.   The neuro-opthamologist at Duke does not think I have myasthenia gravis so it is back to the drawing board to find out about the double vision - no signs of MS either. 

Thank you for the replies.  I am so appreciative of how nice and encouraging everyone here is.

Joyce

[jstroble]

Hey Joy

I just realized when I reread your post that you mentioned you were in Tennessee.  Bad memory.  Hope your bronchitis gets better and hope you don' have asthma.  Sounds like you have enough.  I had a friend who had peripheral neuropathy.  That is a nasty thing to have.  I was told at Duke a long time ago that I have fibro as well but no one has mentioned it for years so I don't really know if I do or not.  I have a lot of muscle pain  but that is part of the polymyositis as well. 

Is anyone out there from NC.  Would love to hear from you. 

Hugs to all

Joyce

[lynnmarie219]

Good luck at your appt tomorrow Joyce...I hope it is just inflammation which can be easily dealt with...I will keep all of my fingers and toes crossed for you...let us know how it goes for you.

Sending lots of positive thoughts and good vibes your way!

[Joy Cox]

Hi again, Joyce, We CERTAINLY have more than one thing in common! Names are almost alike, age, and we both have Dr. St Clair as our rheumies. He 'orchestrates' my health issues at Duke, sort of like a GP. Have been with him since 1995 when John Hopkins transferred me to him. Statement to me was he was well known for treating SS patients just as you said.

How long have you lived in Greensboro area? Wish we lived closer when it comes to health issues. Where you with Dr. St Clair during L. parotid gland issue?  Some Sjoggies have mentioned that they get theirs flushed out. Did not know this could be done; do you? Stones can clog gland...they mention. You can type in top left-hand side SEARCH box parotid and it will bring up previous posts about your desired info.

Having some brain fog today. A tip: you can hit the quote button at top when you want to reply to someone's message and it will be at the top of your message. I use this method to remember 'what the thread is about' and to recall specific details the person said in their message.      

You can put your cursor at the end of their QUOTE you copied when you finish your reply and then backspace and erase their message and it will not show on your post. I'm DENSE though am finding ways to compensate    Just please know, I gave this post my best...

[jstroble]

Hi  all you dear people

I have good news! The doctor said he thought the lump is just an inflamed lymph node.  It is getting smaller already.  I barely could feel it.  I have had some sinus problems.  I wonder if that caused it.  So many many thanks to all of you for being so supportive.  You really helped. 

And to Joy:  I have lived in Greensboro for 25 years.  I wish we were closer too.  It would be so nice to talk to someone who has been through a lot of the same things.  Was your parotid gland removed?  To answer your question, Dr. St. Clair was not my doctor for the left parotidectomy.  I wish he had been.  The doctor who did the surgery cut a nerve and I couldn't blink or close my eye and everything was drooping way down on my face.  I was transferred to the medical school at Winston-Salem, NC and had it repaired.  Also, thanks for the site use tips.  That will help a lot.  I hope your respiratory problems  are better by now. 

Hugs and warm thoughts to all.

Joyce