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anyoen had paraneoplastic syndrome?

dragonG7
Posts: 16
Joined: Feb 2012

Hello,

 

when I was first diagnosed, I was told that I had paraneoplastic synrdome,,,

it's supposed to be a situation caused by my own immune system turning against me due to an existance of a neoplasm... I read that it commonly goes away after the origional malignancy is treated/ cured successfully (which is what I was told too),,, but I still have an autoimmune situation not going away,,, has anyone else ever had paraneoplastic syndrome?

 

I heard that it in itself is quite rare... and it is even more rare in children or adolecents,,, (the cancers that are more commonly associated with this is apparently breast cancer, lung cancer and neuroblastoma) and the type that I had was SPS which is supposed to be more common in breast cancer patients,,, not my form of cancer...

 

I'll appreciate any info or stories... of any type of paraneoplastic syndrome and associated to any form of cancer,,, cause I, so far, know nobody else that had this,,, other than the old man I saw once who had CLL and skin-associated paraneoplastic syndrome...but he was sent to the ICU and we haven't met since,,, (and this was quite some time ago,,,)

schrill
Posts: 2
Joined: May 2013

I have the same thing and just was told  ci have breast cancer

schrill
Posts: 2
Joined: May 2013

are you feeling better after treatent

dragonG7
Posts: 16
Joined: Feb 2012

well... yes, I do feel better with treatment...

I'm cancer free now, but am still getting medication to keep my immune system under control... (maybe I'm too greedy to want more :S)

it seems though, that things are gradually getting better... I thought it would be a much quicker recovery, but it's much longer than I thought... and am wondering if I will ever be able to come off the meds I'm currently on... or if I'll fully gain my physical abilities... :/

 

but thank you, I do feel better :) slowly but surely... I think...

SheIsMySister
Posts: 2
Joined: Mar 2014

Hello dragonG7.  I am new to this site and posted my first blog yesterday - March 23, 2014 - entitled "Paraneoplastic Syndrome/Cerebellar Degeneration - an Elusive Diagnosis."  I think you can find it under my SheIsMySister name. This tells of the first months of my sister's journey with this life-changing illness, which began in November 1999.  Until recently, I have not been able to find a site on which to share information.  At the time she was stricken and, then, diagnosed, there were less than a half dozen KNOWN cases and they were scattered all over the world.  I have been my sister's primary caregiver during these years.  From time to time and more frequently in the past couple of years, she has urged me to try to connect with other survivors.  So, I have gone online many times in search of others to no avail.  It was only when I typed in "Paraneoplastic Syndrome survivors" that I found this site.  I am eager to communicate and she is too.  I think this first blog may answer some of your questions. 

What are your limitations?  How long did it take for you to have a diagnosis and how long was that from the presentation of your first symptoms?  I am finding it a little difficult to navigate this site, but you might be able to help me.  I hope to hear from you soon.

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