Newly Daignosed with MALT Lymphoma

[Billydude]

My rhumy contacted me and asked to see me much earlier than the previously scheduled appointment.  She wants to send me to an oncologist as many of my Sjogrens symptoms are standard lymphoma symptoms.   I guess I'm a bit scared.   I haven't even had the liver biopsy yet that she scheduled for me.   I have a whirlwind of appointments coming up as it is.  New week MRI scans from my neurologist plus the liver biopsy appointments.   Now to worry about possible Lymphoma really puts me over the edge.   GRRRRR

[Billydude]

Also,  for those who have had lymphoma what were the signs if any?

[Dolly Dimples]

  Billydude,  sorry your on a roller coaster too, I hope your fears of Lymphoma are groundless!  and that the  liver tests are negative too..

                  Along with KJ, reading the posts already sent , there is a lot of comforting issues along with the bad!

                  I pray you both come out of all this soon, thinking of you both..
                                                                                  Keep the faith,  Hugs Dolly.

[Chickpea]

Oh Steve, you must be feeling pretty overwhelmed by this latest bit of news!  Of course you're scared and feel ready to topple over the edge ....

There are some great posts here from people who have travelled the road you may be setting out on.  Let them guide you.  If your tests are positive try to be reassured by the good news you'll find, as Dolly says.  If they're negative then it won't have been a wasted experience:  the tests will establish how SjS is developing, which of your organs need extra vigilance, and what meds are most appropriate.

Post lots and let us know how you are feeling.  You've always been so strong for the rest of us, maybe now is the time to lean on us a bit and let us take care of you. 

Thinking of you - Chickpea

[ktfabian]

Kj and Billy-

My thoughts and prayers are with you both.  Please let us know how you're doing and know that we're all here to lend a shoulder or listen when you need to vent.

My very best to both of you, Tracy

[irish]

billydude, So sorry to hear that you are having so many issues. I don't blame you for being worried but at the same time the lymphoma that goes with the autoimmune issues is generally one of the slower growing ones plus responds well to treatment.

I do't know all the symptoms, but I do know that weight loss, night sweats and enlargement of lymph nodes are some of the common ones. I think that loss of appetite and nausea also goes with it.  The lymph nodes in any area can be enlarged. The docs usually feel of the ones behind the clavicle. The docs will ask you to sort of bring your shoulders forward and they feel of the area down deep behind the clavicle. This is the bone that is connected to the shoulder joint and the sternum. I would think others will come and tell you more. Good luck. Try not to let your worry stress you so bad you get a flare in the midst of this ordeal. Irish

[loulou]

KJ and biilydude

I would like to add my prayer and thoughts both your ways.

KJ - keeping you in  my thoughts whilst you go through your radiation, wishing you all the best.

Billydude - hope you dont have to wait to long for  your tests and answers, i wish you the best, if your anything like me than worry is something im great at. I finding the waiting terrrible.

TAke care - try to lookafteryourselves - find something you enjoy to ease your minds for a while.

Loulou

[HL in NY]

Steve: Sorry I just saw your post. I was away this weekend:

Lymphoma, at least the type Sjoggies get, tends to be the B-cell, Non-Hodgins type. Which is great, because it's very slow growing and very treatable. So, step one is to take a deep breath.

Symptoms include lumps, (usually on the Lymph nodes, but you can have the extra-nodal varity too, which is what I had. In my case it was in my parotid gland) fevers, nightsweats, weightloss, and itchy skin. Sadly there's a lot of crossover there with SJS, so it's really hard to tell. The bottom line is they will need to do a pile of tests. And then they'll do more tests. And then, a few tests. (seeing a pattern here?)

Let us know how things are going for you, and try and find something to do to keep your brain busy so it doesn't worry you to death. These brains are jst too smart for their own good sometimes. So, learn Russian, read a (long) series of books, watch a couple seasons of a new TV show, take up a new craft- just to keep yourself from going nuts.

Lots of good thoughts going your way,

Heather

[Billydude]

I'm most likely overreating as usual.   I do have the constantly swollen parotid glands and had a spell no long ago with lumps in them but it passed,  I have the night sweats,  some nausea, the fatique.  Yes,  just the usual Sjogrens things but I guess they are similiar to Lymphoma things so we are just being more safe than sorry I think.    The only symptom I wouldn't mind a little is the weight loss!!!

[Epson]

KJ,

I am just getting over bladder cancer, the good news is the cancer you have is treatable with very favorable results, but definitely a major inconvenience.  It might sound strange, but cancer makes you appreciate Sjogren's, now Sjogren's seems like a pesky little nat.

Billydude, I hope this is a false alarm for you, while it sucks to have to wait for test results, having everything checked out gave me some piece of mind that I didn't have any problems any place else in my body.

Good luck to both of you.