some good news!!!

[annie1962]

Hi Everyone,

I hope everyone is doing well and getting good results!!

I had a repeat pet scan on Monday and the doctor said it was fine!!!!  Last week l went to see a oral specialist regarding my dry mouth (sjogrens) and  she found  suspicious tissue area on the roof of my mouth and l am booked in for a biopsy in ten days.   My oncologist wants to see me after l've had the biopsy to discuss my treatment.  So at this stage l have low grade MALT  (very indolent) in my left eye and now l have to  wait to  see what's going on in my mouth.

I would think that if l had oral cancer on the roof palette of my mouth that the pet scan would of picked it up???  I did some research on lumps and bumps in the mouth and all l got is the big C word, with my history with auto immune disease and  Malt who knows  what is going on.   I was told by my Professor of Lymphoma that l have  a very complicated case, so l suppose they will have to work a bit harder to figure things out for me.


Anna


dx 2003 low grade Malt in right lacrimal gland which transformed to high grade  6 rounds of CHOP

dx  06/2012 low grade Malt in left lacrimal gland (very indolent) pet scans showed high intake in lung area

Nov/2012  Lump and suspicious tissue on roof palette of mouth, had pet scan this week and it was fine.  Booked in for biopsy of roof palette

[lynnmarie219]

Great news on the PET scan being A-ok!

One step at a time...that's all we can do some days...keep us posted on how you are doing!

[Meld256]

Annie,

I'll also congratulate on your good news about the PET scan; that's great!  I don't think I've welcomed you to the forum, so allow me to do that, too.    I hope you're enjoying learning and sharing here with us.

Please keep us posted on more results later with the biopsy and we will hope for good news there, too.

Take care,
Melinda

[annie1962]

Thank you Lynnemarie and Melinda for your support.  I got very emotional when they told me my pet scans were fine, they were mainly looking at the lung area but they still want me to have a biopsy for the lump in my mouth.  Obviously the pet scan didn't  show any activity in my mouth area so l guess they want to make sure its not C .
Melinda this is such a great support group for us, not sure when it was started but l wish l had all this information back 23 years ago when l was first diagnosed back then and l didn't know anything about auto immune diseases.  There is so much information shared here and we can all learn and help each other.
God bless  and lets hope they find a cure for all of us.

[Meld256]

Annie,

I've been here since Sept. 2010 when I was diagnosed, but the site has been around since 1999.  If you care to look in the "History" section you'll get more info.  You've dealt with this for a long time, and I'm sure 23 years ago it was difficult to find any information much at all.

Sjogren's World was begun by two wonderful woman, Spring and Care, who were both searching for more information. Spring is our Executive Director and continues to work to make this site the best it can be. Sadly, our dear Care passed last November, but we feel honored to keep her memory by helping and sharing with others.  This caring place to come and encourage (and be encouraged) has been a true blessing for me.

We're glad you've joined us, and hope to hear more from you soon.
Hugs,
Melinda

[annie1962]

Thank you for that information Melinda, l will look at the history and read it.

[Cheryl]

Annie,
I'm thrilled that your PET results were good!  Maybe your mouth biopsy will show that the lump is just another autoimmune thing.  Were you given Rituxan with the CHOP?  Please continue to come here often, and keep us posted.
Hugs and prayers,
Cheryl

[Pisces24]

Sooo glad that your PET was good. I also had a PET scan last month that was good.
Congradulations!

[susanep]

Welcome Annie, and Congrats on your pet scan. I am praying that the biopsy goes fine.

susanep

[annie1962]

Thank you everyone for your replies, next week l am booked in for a biopsy and  l pray for a good result.

Cheryl - I had CHOP back in 2003, put my cancer and sjogrens into remission.  Now its back and even though l feel fit and healthy on the outside l am drying up on the inside.

Big hugs to you all and lets hope they find a  cure for all these auto immune diseases.

Take care