Thymoma

Hi, I am 35 years old. I was diagnosed with Thymoma that spread to my lungs. I have had chemo 6 times . I am going to begin a study soon with anti-growth oral pills. Has anyone had success with other chemo's or studies?

Hi. I'm 33yo. I was diagnosed in April of 2005 and had 6 chemo treatments. The tumor shrank to about 75% and my doctor decided to do injections (Sandostatin LAR). My last chemo was in October of 2005. I've been on the injection for 5 months and somehow the tumor has grown a little and he wants to keep me on the injections for a few more months to see if it will keep on growing. If so, he wants to do chemo again. I hope your trial with pills goes well and please keep me inform as I would rather take a pill than the injection. Thanks. God Bless.

Joel

Joel,

I will keep you informed of how the pills are working. They are so much better you just take them daily at home. I too had 6 iv chemos however it was to toxic for me. Keep me informed on how the injections work out for you.
God bless you as well.
Jacquee

hi my name is gillian and i am thirty three.i live in dublin ireland.i was diagnosied in 2002 with thymona and at the moment i am having chemo the thymona has spread to my left kideny.i have been through hell and back the last couple of years between operations and others treatments but the cancer just keepscoming back.i am finding it hard to find info on this type of cancer.it seems to be very hard to treat.

I am getting ready to get on a new experimental treatment which is less toxic than chemo via injection which is supposed to attack only the cancer cell. Hope this works. Will let you all know once I get on the treatment.

A cousin was diagnosed a week ago with thymoma that has spread to the lung. She had her 1st chemo treatment last week. We really don't know what to expect because the doctor gave us pretty upsetting news. Told us 3 to 6 months if her body rejects chemo and 2 years if it works. Does this sound true with anyone? This is the first time i've ever heard of this type of cancer. Any news would be appreciated.

Thymoma is a very rare cancer (slow growing). It also depends on what stage of the cancer your cousin is in. I have been battling thymoma since April of 2005. I was on chemo (Adriamycin, cisplatin, and something else) for a while then stopped that for 8 months and was placed on Sandostatin LAR injections which was supposed to stop the cancer from spreading and growing but that didn't work and have to go to Duke University Hospital and was placed back on chemo, this time a different regimen (gemcitabine). So far the tumor has stopped growing and is showing some regresion. My doctor also started Avastin, which is to stop blood supply to the tumor (hoping this works). I wish your cousin good luck and speedy recovery. Tell your cousin to hang in there and not to give up and to keep a positive outlook.

Joel

Hi everyone,

My husband is 32 years old and has been recently diagnosed with  miasthemia gravis (MG) and his cat scam result had shown that he has a tumor in his thymus. We are really worried and scared. I would like to know more about the relationship between miasthemia gravis and thymus tumors. Which percentage is malign? Has anybody been diagnosed with MG?  Any information would be really helpful.

Thanks,

Caring Wife

Mg and thymoma kind of go hand in hand.  I don't remember the exact numbers, but I think it is somewhere around 75% of thymoma diagnosed patients have, or will get MG.  MG is usually what leads to finding the thymoma tumor.

 

Sounds like you are early in the process of diagnosis yet if the MG lead to the thymoma diagnosis.  That may be a good thing sing patients that have MG which lead to finding a tumor usually are in earlier stages which are very treatable

I do recommend that you seek treatment at a larger clinic.  Most local oncologists are clueless regarding thymoma.  If you are in the midwest I would strongly recommend University of Indiana at Indianapolis however, others like MD Anderson, Mayo Clinic, Stanford, Sloan Kettering, etc. would also be good.

Dr. Loehrer at IU is recognized as the formost expert on thymoma in the US, but most of the rest of the big regionals mentioned will consult with him for Thymoma cases and know of his work.

It's hard to treat because it is statistically rare.  The result of that is that there is little research being done on it.  it usually gets lumped into the "solid tumors" group or lung cancer.