Anyone with Sjogren's and CTCL?

[Vasha]

Hello Everyone,

My doctor has confirmed my Sjogren's diagnosis, and he is beginning testing for neuropathy.  I also have been having biopsies for skin lesions on my inner thighs, and the pathologists suspect initially that I have cutaneous T-cell lymphoma, possibly mycosis fungoides.  They are still working on the final tests, so I do not have the final answer, but I wondered if any of you have this diagnosis as well.  I know that SS patients are more likely to have cutaneous B-cell lymphoma if they have a CTCL, so I wanted to see if any of you have experience with this disease.

I am concerned about having both problems to treat and how the treatments may impact each other.  I am struggling so much each day right now.  I just can't imagine my body handing cancer and Sjogren's, but I keep going, and having this group to turn to is such a help.

Thanks for being there . . .

[tomsmom]

I don't have CTCL but wanted to say my thoughts are with you.  Take care!

[inga]

I think this is a time to trust your doctors. 

Obviously the lymphoma needs treatment.  Sjogren's is a secondary issue.  I am sure the doctors will give you some options.  I know this must be frightening, but, truly, lymphoma treatment has come a long way.  Hang in there.

[gphx]

Sarcoidosis is frequently initially misdiagnosed as lymphoma and many sarc patients have Sjogrens too. Wishing you the best in any case.

[Cheryl]

Vasha,
  I have never had CTCL, but I do have experience with B cell NHL.   If I can be of any help to you, feel free to message me.
Cheryl

[Vasha]

Thank you, Cheryl.  I will message you for additional information.  I truly appreciate the offer of support.  The  waiting for test results is so difficult.  I just want to know if this is what I need to deal with or not at this point.  The SS has been overwhelming enough, unless the two have actually been causing my issues.

Thank you to everyone who responded with support.  It does help me to not feel alone in my struggle. . .

Vasha