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got a call from the doc...it's not s.l.e.....seems i have a tumor on my right lung....and all the inflammation and crazy bloodwork comes from something called paraneoplastic syndrome...it is the bodies response to cancer and apparently it is quite rare...anyone heard of this before. The doc said don't take anymore methotrexate and dropped the prednisone from 50 mg to 30 mg in one day and then says drop 5 mg every 2 days...well holy cow....have I got the shakes and can't sleep and losing weight and feel like crap....today I have 20 mg prednisone.....I see the oncologist on wednesday and I'm trying to be positive....oddly enough though...as the prednisone drops I seem to be able to walk better....this has been one crazy ride.
If anyone knows about paraneoplastic syndrome can you let me know ?
 

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Dear Pilot, I do not know about this syndrome, but I can fully understand that you feel pretty startled right now,putting it mildly. Please do not feel that we won't support you because it is not SLE.
If you want to talk you are welcome to Pm me. Sometimes we just can't share our fears with our family.
Lots of Love,
Lola x
 

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Dear Pilot

Gosh your head must be reeling with all of this :hugbetter: I hadnt heard of this syndrome but I googled it and it is quite rare alright. I would imagine not many people here know about it. Thank goodness they picked up on the bloodwork though.

Alternatively there are cancer message boards and support sites if you can google them and others there might have more experience.

I want to wish you the very best of luck on Wednesday. Im sure you will be facing a lot of tests ahead of you. You probably dont even know what questions you should be asking at the moment but make sure that you check with your oncologist how you should contact him/her in between appointments if you have worries or concerns.

Take good care of yourself
Love
Joan:rose:
 

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Hey (((((((((Pilot))))))))))) :hugbetter:

I'm sorry to hear about this recent turn of events... It must be a shock for you.....

I don't know anything about paraneoplastic syndrome, but my dad was diagnosed with lung cancer when I was about 4 years old. I don't know what the symptoms were that sent him to the doc in the first place, but I do know that the tumour in his lung was removed and a couple of months after his surgery he was back to work and back to playing with me and his dog in the yard and going camping in the mountains! He was as healthy as he'd ever been and that was the last anyone heard of the tumour too; it never came back!

I hope your meeting with the oncologist on Wednesday goes well. Do let us know how you get on.

Sending loads and loads of strengthening hugs your way Pilot :grouphug2::grhug: and tons and tons of wishes for a speedy recovery :goodvibes::pixiedust: :goodvibes:

:flowery:

Zoi
 

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Dearest Pilot,

Talk about a change in events.....gosh, I am so sorry your dealing with this. I have never heard of this so I will be off to Google it here shortly.

Please let us know how you make out on Wednesday with the Oncologist.

I do wish you all the luck I can muster up to send your way.

Keep your chin up!:wink2:
 

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Pilot, Hi, and welcome. I have been very sick and off of this board lately, but thought I would check in tonight, and wow !!. I have never heard of your syndrome, but I will keep you in my thoughts, especially on wednesday, for your meeting. Please let us know how it goes. We will support you in absoutly
any way that we can. ((((hugs))))
 
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