thymic carcinoma

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thymic carcinoma

by dorne on Thu Mar 17, 2011 08:16 AM

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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 ? 

RE: thymic carcinoma

by dorne on Thu Mar 17, 2011 08:17 AM

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

RE: thymic carcinoma

by sngerson on Sat Mar 19, 2011 12:56 PM

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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

RE: thymic carcinoma

by Del185 on Sat May 07, 2011 10:02 PM

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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

RE: thymic carcinoma

by SpringFlowers on Thu May 26, 2011 06:55 PM

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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. 

RE: thymic carcinoma

by AGoyal on Fri Jun 03, 2011 07:41 PM

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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.

RE: thymic carcinoma

by kirstiematt76 on Tue Apr 03, 2012 07:24 PM

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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. 

RE: thymic carcinoma

by sngerson on Tue Apr 03, 2012 08:42 PM

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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

RE: thymic carcinoma

by Tamren on Wed Mar 13, 2013 07:31 PM

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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~

RE: thymic carcinoma

by nickmakris on Fri May 31, 2013 01:56 AM

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My brother was told the same thing, that surgery was out of the question. You have to remember, always get a second opinion. We were told surgery is out of the question from a surgeon who wasnt even qualified to even assess my brothers case. My brother has a 10cm tumor coming from the thymus, most surgeons dont have the confidents or experience in these situations, so instead of saying the truth, that this is way over their heads, they say its not possible. Surgeons dont want a failed surgery on their record because it can make them look bad. after 3 months of unnecessay chemo the cancer spread to his liver and his tumor grew. We found a surgeon with the experience and the confidence to remove the entire tumor. We are in toronto,, the surgeons name Shaf Kashavjee. Were going in for surgery next week. So once again get a second opinion, when they tell you its impossible, thats when you insist on a second opinion. Diet excercise and suppliments can help ones body stay strong. Faith and prayer is essential. 

God bless & be well

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