thymic carcinoma

I am waiting   just waiting   and it is starting to drive me crazy I swear.

 Not much information on this "evil twin" of Thymoma bu tit comes back... it always comes back.

From what I have read usual recurrence is 1-2 yrs can be as long a 5!!

 I am  about 18 months out

 I feel great and do consider myself a walking miracle, especially since my original oncologist had me dead in 2 months and wasn't very sure the surgeon would even agree to see me let alone operate. But he did and was wonderful I feel blessed to have been on the recieving end of his talent!

Is there anyone else out there who has THYMIC CARCINOMA ? 

p.s. this picture is just one of my adorable grandsons!!!

Dorne, I have thymic carcinoma, and was stable for nearly 2 years after conventional chemo and radiation to the primary. My metastases started to regrow. my cancer then progressed.   I am now on a multi-kinase inhibitor, Sutent.  something very new for this and am having positive results.  Most things seems to work for a while , then one needs further treatment. From my research , there are a number of things that seem to work and research has some promise. I can refer you to articles if you wish.  steve

Hi I was diagnosed in January this year and have felt so alone! Thank god I've found someone who has same. I'm 39 and have had tumour in chest debulked in feb and I'm now on cisplatin and etoposide every three weeks. I'm on dose 3 out of 4 then I'm supposed to have radio. I have lymph mets. I'm terrified. I've got no idea how long I have or if treatment works. I feel ok but I'm paranoid about every pain or twinge just in case it spreads. Which chemo did you have and was tumour removed complete?? Del x

Don't lose it....I just got back from oncologists (supposedly wonderfuly -yuk).  Me too....TC - My History:  Had Breast Cancer/removed that, just needed radiation to clear area...go for PETScan and now i'm told i'm toast....Have spot on my liver, bones look affected, nodes between my lung and the Thymic Carcinoma....they sent me home to DIE....great doc's, don't you think?  Only place I don't have cancer is the breast!  I've heard PetScans can be misintepreted, false readins with the FDG injections...did you have PET?   I have no symptoms of anything, all this a big shock to me....my cousin making me an appt at MassGeneral, none of us can believe...this Thymic Cancer is weird, I don't feel anything, do you have symptoms, enlarged nodes or swelling?  I'm mystifieid too, given 1-2 yrs, no hope, but did get to talk to doc at MassGen...he says POO on that diagnosis and I should not go planning any "end events"...cheer up, i'll let you know how I make out. 

HI there!  I want to talk with you about Sutent (Sunitinib) and how you are doing on it, side effects, how long you have been taking it and results.  Could you please email meat

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directly.  I would like to speak with you also if possible.

My husband was diagnosed with Thymic Carcinoma in August 2011 - at diagnosis it had spread to the lining of his lungs.  He had an 18 week course of etoposide/cisplatin which didn't have much of an impact and then had two lots of CAV chemo but latest scan results show that altho main tumour is unchanged there is more spread in lining of the lungs.  We are now waiting to hear if we can get funding for Sutent - interesting to hear about someone else having this - we are now pinning all our hopes on this drug.  My husband is 36 and before this very fit and healthy.  My heart goes out to you all - we have been shattered by this cancer.  We have two little boys aged 9 and 5 - Matt needs to be here as long as possible.  Any thoughts/advice etc gratefully received. 

On Apr 03, 2012 7:24 PMkirstiematt76wrote:

My husband was diagnosed with Thymic Carcinoma in August 2011 - at diagnosis it had spread to the lining of his lungs.  He had an 18 week course of etoposide/cisplatin which didn't have much of an impact and then had two lots of CAV chemo but latest scan results show that altho main tumour is unchanged there is more spread in lining of the lungs.  We are now waiting to hear if we can get funding for Sutent - interesting to hear about someone else having this - we are now pinning all our hopes on this drug.  My husband is 36 and before this very fit and healthy.  My heart goes out to you all - we have been shattered by this cancer.  We have two little boys aged 9 and 5 - Matt needs to be here as long as possible.  Any thoughts/advice etc gratefully received. 

I was diagnosed 3.5 years ago and by then had metastases.  I responded for 18 months to Carbtaxol regimen,, then radiation, then had progression and am now stable 15  months on Sutent. 

I can email you the essential article on this and some othre people have responded to Sutent.

Email me

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, and I will forward the information.

Best, sng

Hi, my brother was diagnosed in January 2013 with thymic carcinoma.  We are still trying to grasp the diagnosis.  He isn't a candidate for surgery at this time. The mass is too large for removal.  He will begin chemo and radiation soon.  We are praying for the best outcome.  Any information you would be willing to share would be apprecaited. 

Tammy~