Myasthenia Gravis and Thymoma

JulieV1218

I understand this is quite rare and I havent found anyone in this area that can relate - is there anyone out there that can share their story?

slj

Hi Julie, Thisis my first time on CSN so I hope I do it right. I was diagnosed with Thynoma and occular Masthenia. I had surgery last July and my cancer was Neuroblastoma, which is primarily a childrens cancer. I am not a child. This cancer is so rare in adults, the doctors do not know how to treat me. So far I have not had any treatments. What is your experience slj

bren293

Hi, Julie. I am 33 years old and was diagnosed in '92 with MG. I had problems swallowing, weakness in my arms and general weakness. Unknowing that I had this disease, I had given birth to 2 children and I could trace my weakness back to high school. My family doctor diagnosed me after a 15 minute exam and question session.I feel I owe him my life since he saved me. At the time, there was not much information available about the disease, treatment, and remission information. Fortunately, I live in the same city where the only doctor in my state (at that time) performs thymectomies. In just a matter of days I was diagnosed, hospitalized, put on treatment, had MRIs performed, and was scheduled for surgery to remove my thymoma which was as large as my lungs. I have been stable since the operation, but when I am stressed or tired I do get tired and exhausted easily. I consider myself strong and a survivor. You do have to find a purpose to live--mine was my children, and get as much information as possible from every resource. Good luck!

MScharf

slj said:

Hi Julie, Thisis my first time on CSN so I hope I do it right. I was diagnosed with Thynoma and occular Masthenia. I had surgery last July and my cancer was Neuroblastoma, which is primarily a childrens cancer. I am not a child. This cancer is so rare in adults, the doctors do not know how to treat me. So far I have not had any treatments. What is your experience slj

I have just joined this website, so i am not sure if you will receive this or not. My husband was diagnosed with MG and then Thymoma 10 years ago. He has been in treatment for the malignant thymoma for most of that time. He can give any information anyone needs on this type of cancer.

Tonky

MScharf said:

I have just joined this website, so i am not sure if you will receive this or not. My husband was diagnosed with MG and then Thymoma 10 years ago. He has been in treatment for the malignant thymoma for most of that time. He can give any information anyone needs on this type of cancer.

Dear MS,

I would love to correspond with you. My husband was diagnosed with malignant thymoma in April of 1996....9 years ago! He had a recurrence in 2001, then another in the fall of 2004. The last 8 rounds of chemo, using several different drugs, failed; he is now in a clinical trial at IUPUI in Idianapolis, and a week ago had his second infusion of the trial drug, Alimta. He will have scans on the 15th to determine whether or not there has been any response to this treatment. He will remain in the trial if there is no new growth, or there is shrinkage....any disease progression will disqualify him. If this is the case, he will be sent back to our doctors her in GA for more approved chemo. There are several which he hasn't had that have had limited success with other thymoma patients.
Considering all the treatments he has had lately, plus having had both knees replaced last year, he is doing well after he gets over the acute side effects of this drug. (They are minimal compared to things like Cisplatin, but he still has a few days of feeling lousy.) He has also had bladder cancer for 14 years, but it is mercifully in remission right now.

If you read this, and would like to correspond, my e-mail is tonkyii@bellsouth.net . Just be sure to put "thymoma" in the subject line so I won't delete it.

Good luck to you and your husband.

Jane (tonkyii)