Response to the thymoma query

Response
Megan
updated:2005.10.17

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Please, tell us your gender and your age and maybe a short discribtion about yourself, family, profession....	2002.05.11 My name is Megan. I am a 23 year old single mother. Before I got sick I was a college student pursuing a degree in journalism living in Atlanta, GA. (I am moving to Texas this month.) The first time I was diagnosed with thymoma was in Nov. 1996. It was noninvasive. In March 2000 I had a recurrence. This time it had spread in my chest like a wild fire.
How was your cancer detected?	The first time it was detected through a chest x-ray ordered by my general physician. The second time it was detected after I passed out at work and was taken to the hospital and a CAT scan was done. The second tumor was 16x10 and was entangled around my heart and left lung.
Did you feel any kind of pain or did you notice a change of your body?	With the second tumor I had extreme chest pain, difficultly in swallowing, and began coughing up blood occasionally.
Do you know your staging?	4A
Do you have a family history of cancer?	My grandfather died of multiple myleoma. My grandmother had breast cancer.
Did you have any kind of surgery before?	C-section
What kind of treatment did you receive -surgery	The first tumor was removed and considered to be encapsulated. The second tumor was much more difficult to remove. First I had to go through chemo to shrink the tumor before they could operate. The cancer had invaded my left lung and pericardium. They took out my left lung, pericardium, nerve to the left vocal cord, and nerve to the left diaphragm.
-chemotherapie	Adriamycin,Cisplatin,and Cytoxan. I received 7 rounds. 3 pre-surgery and 4 post-surgery .
-radiation	I do not remember the dose. I know it lasted 6 weeks.
Where there any kind of side effects involved in your treatment?	Radiation: I have some pretty nasty burns on my left breast. The worst side effect was the nausea and vomiting. I lost over 20 lb. I can also remember terrible fatigue. It took major effort just to get out of bed and get dressed.
Feelings - Emotions What was your feeling when you heard your diagnosis? How did you feel during treatment?	My first thought was "God, what have I done to deserve this illness?" I was angry and an emotional wreck. I locked myself in my room for about a week. Then my Mom said something to me that changed my attitude. "You better get busy living or get busy dying. You are not dead yet. You can fight this." I was very nauseated during chemo and also very bald. I tried to stay positive when I found out the chemo was shrinking the tumor. That gave me hope of being cured.
What was the most difficult part during your treatment	The most difficult part of my treatment was radiation. I had just gone through chemo and a major operation. My body was so weak and my spirits were down. I ended up getting an infection in my esophagus from the radiation. I was in the hospital for almost two months due to it.
Where were you treated	MD Anderson Cancer Center, Houston Texas
Name your doctor if you can recommend him or her	A wonderful surgeon....Dr. J.B. Putnam. I believe he is one of the great reasons I am alive today.
What tip could you give a new patient?	Become informed about your disease. Work closely with your oncologist. After you are in remission make sure to have a good doctor who will give you the proper test and follow ups. I wish I had known more about my disease the first time I was diagnosed. The doctor I had then told me that all I needed was surgery and I would be completely cured. He did 1 chest x-ray 6 months later and told me never to worry about this disease again. He said I needed no further follow up and should get on with my life. Even when I started having symptoms of a recurrence, he told me I just worried too much and it was all in my head. This doctor is in Atlanta and I would not send my worst enemy to him! I think he was less educated on the disease than I was.
What bothered you the most during your treatment?	Isolation. Being young, all my "friends"got scared when they heard I had cancer. They all disappeared. I felt like I was the only human on this planet to have thymoma.
What helped you most during this period?	My young son's loving smile.
How're you feeling today?	I have been in remission for one year. I still am tired a good bit. I also have cardiomyopathy due to the chemo. I take a lot of heart meds and limit my activities.
Tell us a bit about your check-ups - Where do you get your check-ups - How often do you go for a check up? - What do they do at your check up?	I go to MD Anderson. I am on 3 month check ups. When I go for a check they do a chest x-ray, blood work, CAT scan of the chest, and a physical examination.
How do you feel before you have to go to a check up	Terrified
What do you do to make this time as easy as posssible?	I pray. I also think of things I want to do in the future. I make mental lists of places I want to see, books I want to read, mountains I want to climb one day. I also think about how I want to live to see my tiny son graduate. I like to believe that I will live to do these things. Thinking these thoughts help me get through all the tests with a positive attitude and outlook.
Do you take any precautions to prevent the recurrence from cancer?	I eat better.
Have you made significant changes to your life after you got cancer?	My priorities have shifted. I concentrate on the people I love and are important to me. I try to thank God for each day.
How 're you feeling about the disease	I believe I am optimistic. Although I will have a bad week and cry a lot just knowing my cancer has returned. The fear sometimes can be my worst enemy,
Status - how is your progress?.	1 year remission....Praying that I stay in remission.
Ideas / recommendation	I cried when I found this web site. Before finding this web site I felt like no one else in the whole world had this terrible thymoma.
Leave your e-mail address:	Megan7996@aol.com I would love to talk with more people dealing with thymoma.

2005.10.17

Hi Thymoma Survivors, Patients, and Caregivers,

M name is Megan and I posted my story 05/11/2002 on the thymoma website. At that time, I was one year in remission from stage IVa malignant thymoma. I have battled thymoma for almost a decade now. The first time I became sick I was 17, almost 18. It was stage I. The second time I had just turned 21 and it was stage IV. At that time, it had spread like a wild fire and my doctors in Atlanta, GA gave me little hope. I went through three or four rounds of chemotherapy, a surgery which removed my lung, pericardium, left vocal chord nerve, and left diaphram nerve, six weeks of radiation, and finally three or four more rounds of chemotherapy (they called it "cleaning house"). I later discovered I developed cardiomyopathy and CHF (congestive heart failure) due to all the chemotherapy I received. During the past four and a half years my heart has had it's up and downs, but is now stable. I take many cardiac medicines and have an excellent cardiologist. I am treated at The Texas Heart Institute (The Debakey clinic is there; he is a pioneer who performed the first successful heart transplant.) In the future, I will have to undergo either valve replacements, heart transplant, or implantation of a pacemaker. Right now since I am stable I am not in need of those invasive treatments. Amen!

I almost made it to my five year mark free of thymoma. Last week I went to MD Anderson Cancer Center in Houston for my check up. I have been feeling well except for some mild left side, abdominal pain. Thymoma has recurred. The tumor is a little less than two inches around the spleen area. Like a soldier, I am getting prepared for my third battle. I am now almost 27, married for over two years to a wonderful man, and have a nine year old son. I will fight this again and am so lucky to have the support of my friends and family. I am staying very positive about all of this and trust God has a plan. I have been through MANY depressions the last decade, but I am not going to let myself go there again. I was once at the point where I was just a step away from commiting suicide. I now want to enjoy EVERY day that I have been blessed with.

I return to Houston this week for further tests and we are all praying that it is localized (not spread anywhere else in my body.) I have a wonderful relationship with my oncologist and he has become a friend, not just my physichian. I recommend getting a second opinion at MD Anderson Cancer Center to anyone that has the means. The whole staff has been wonderful and they are still number 1 at fighting cancer. They treat the patient as a whole. In addition to medical treatment, they have support groups, art therapy, meditation, yoga, nutrition education, ect... I never found that in Atlanta, GA, not even at Emory University Hospital (our "best" hospital).

I will update my prognosis as I find out more information. I am staying calm and positive. I have to keep my chin up. God bless everyone that is a survivor of thymoma (and also the caregivers!) There is such an amazing inner strength in all of us!

Megan Stevens Harrell
Atlanta, GA
Houston, TX

Please feel free to e-mail me...I love to talk to other thymoma patients/caregivers!