Thymoma the people

Data from over 80 thymoma patients
read about the experience from other people
updated: 2008.5.23

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Please share your story

Have you been cured from thymoma ?
Share your survival story with us. So many current thymoma patients would appreciate every single word.
Please keep us and all your friends informed about your progress in your day to day fight with thymoma.
Do you think you're terminal ill? Please share your story. .
Even if it isn't possible, with todays treatment options, to get cured, there is a good chance that you will be one of the longterm survivors. Write me how you deal with your every day life, what you appreciate and what makes life difficult for you. How do you think about death? Have you made a last will or any other specific arrangement in case of your death? Do you talk with your spouse or significant other,kids,parents or friends about your death?

If you did not already answered our questions, please do so by going here:
Tell us about your thymoma

Wenn du noch nicht unseren Fragebogen ausgefuellt hast, bitte erledige es hier:
wir brauchen deine Daten

MyG = Myasthenia Gravis
prca = pure red cell aplasia
cad = castlemans disease

Sometimes you don't get a second chance or what I regret

Almost 5 years ago my girlfriend died due to breast cancer at the age of 34.
I'm quite sure that she knew that her chances of survival were more than slim but she never talked about her fear, her wishes, her expectations etc.
Only once she opened up a little bit and was worried what would happened to her beloved dog after her death.
I have to admit that I'm still ashamed of myself for not behaving and acting in a proper way. I was scared about this topic and afraid to talk about it.
I was not ready for this task by the time and later on there was never a second opportunity for me.
So learn something from me. If you're in touch with a terminal ill person prepare yourself for questions and remarks about death.
Don't deny the possible urge from a patient to talk about this topic just because you feel insecure about it.
There is no fault to admit that you have no knowledge or experience with the topic death. Overcome your own fear and give the patient a chance to talk.
All what you have to do is listen, showing sympathy and beeing there.
Let someone cry on your shoulder, give him or her a hug that's all what it takes for the beginning and everything else.....

If you need assistance or feel overwhelmed by this kind of talks then ask for help from family members or professional organisations such as the local church or hospice centers.

Talking about death with a loved one might be very difficult and of course very emotional but it's a chance also and an act of love. Don't miss this opportunity.
You can't avoid death just by not talking about it.
Sometimes the patient would like to talk but is afraid that nobody could handle the burden of this task.
So be aware. Sue

2008
Steve stage 2 5/2008

2007
Pericles stage 4a 11/2007
Jean stage 3 10/2007
Nicolas stage ? 10/2007
Kimberly stage ? 5/2007
Paul stage 2 5/2007
Theresa stage 3 4/2007
Arla stage 4 3/2007
David stage 2 3/2007
Mack stage 3 3/2007
NoName7 stage 4a 3/2007
Andrew stage1 3/2007 (2005)
Philip 2007/03
Teri 2007/03
Bob stage1-2 2007/03

2005

Patricia 9/2005
Darlene stage2+ 9/2005
Elizabeth stage2+ 9/2005
Steve stage2+ 5/2005
Jill stage 1+ 4/2005
Clive 2005 25 years after thymoma update 2007.03.28
Marilyn 2005

1997-2004

Missdiagnosed

Chumuni

Staging not available or questionable

Michael FL
2003.6.3

Tonya NC
2003.1.10

diagnosed summer 1997 with benign thymoma

Arto Finland 2001.12.26		No recurrence, 2nd year of remission
Edith Canada 2002.05.22	MyG	4 recurrences,battled since 11/87, misdiagnosed in the beginning, poor quality of life, respiratory problems, deceased 5/02 after a long fight finally
Jennifer CA 2002.03.06	MyG	Diagnosed 9/92 at age 23 and given a poor diagnosis and YET feeling good. No recurrence at all!! A longterm survivor, truly. CURED
No name2 2002.02.02		No recurrence,3th year of remission, had a ruptured thymoma
Pamela UK 2001.01.16		diagnosed 6/2000,cancer spread rapidly, chemo didn't work, No news......
Sally CA 2002.01.04		10/96 debulking surgery, proton radiation, in remission
Syd Canada 2001.10.30		At age 72 his thymoma came back after 26 years,currently receiving treatment, has survived 3 of 4 of his doctors :-)) He is a survivor, truly

Dwight CA
2002.02.24

MyG

batteling since 4/84,several surgeries, chemo didn't work,since 8/00 wait + see for 4th recurrence, interested in new treatments, good quality of life

Vince Aus
2002.02.27

MyG

diagnosed '92 with bad prognosis, miraculous recovery, cancer returned 4/99, received Gamma Globulin treatment ,cancer has vanished again! .

Staging 1-2

Leigh UK
2003.6.6

Brant CA 2001.10.16	MyG	surgery 8/2000,conformal radiation,some complications but is fine now
Brigitte GER		5 years free of cancer. CURED
Cecilia NM 2002.01.09	Lupus	diagnosed 12/99, in remission since 2 years, complications from Lupus
Costa Can. 2001.12.03		diagnosed 5/2000, after surgery in remission, feeling fine
Doris GER		diagnosed in '99, surgery, radiation, in remission, feeling fine
Linda MA 2001.12.28		diagnosed ?, in remission
Martha NM 2002.01.30	cad	diagnosed 7/99, in remission since '99,autoimmune disease castlemans
Maryann NJ 2002.01.30	MyG	diagnosed 4/99, no signs of cancer
Motie NJ 2002.01.02		In remission since 5/2000; won't let doctors interfere with his life anymore
No name2 2001.05.17	MyG	Female from New Zealand ; 8 years free of cancer. CURED
Keng 2002.03.08	MyG	diagnosed 9/01 with benign thymoma, after surgery she found out that the tumor was malignant, she is recovering from radiation treatment currently

Leslie NY
2002.07.14

diagnosed 2 years ago with thymic carcinoma, had surgery, radiation and
chemo, doing fine right now but is nervous about a relapse.

Staging 3

Kay TX 2002.11.16		diagnosed summer 2002
Behzad Can. 2002.01.12		diagnosed 5/96,recurrence surgically removed 10/00,in remission again
Gordon MI 2001.12.12	MyG	diagnosed 8/99, no recurrence, is in his 3th year of remission, feeling fine
Jan FL 2002.01.15	MyG	after a misdiagnosis '99 she got help from a skilled surgeon and is doing alright now but she is still very cautious

Fong Can
2002.03.08

MyG

diagnosed 9/01 with a benign thymoma, after surgery he was told it's malignant, he received radiation treatment + is recovering well

Nancy CA
2002.03.30

diagnosed 11/00, received treatment for one year and had it all, chemo prior surgery, thereafter and radiation.She is getting along pretty well now

Mary CA
2002.03.06

diagnosed 2 years ago, had surgery, + chemo caused horrible side effects lung is paralyzed, made great changes, feeling good, she's an inspiration

Peter UK
2002.07.01

diagnosed 1 year ago, chemo+radiation reduced the tumor, operation hasn't been possible, he's not yet back to his "old" self but life goes on

Staging 4a

Lisa AU
2003.07.03

Alisa Calgary 2003.4.24
Andie Idaho 2001.11.20	MyG	26 years, had surgery 10/2000, currently receiving chemo
Jimmie NJ 2002.02.22		diagnosed 12/01, had surgery and is currently receiving radiation treatment
Kim TX 2000.10.08		diagnosed 8/99, had surgery after chemo, haven't received an update since 1,5 years and would like to know how she is doing
Diane CA 2002.01.04		8/99 diagnosed, had surgery after chemo reduced the tumor,more treatment and complications but NOW thankful to be alive and stable
Don IN 2002.01.16	MyG	10/97 diagnosed and in his 5th year of remission, his MG got better too
Gyjs NL 2000.02.20		diagnosed in '99 and after surgery and radiation treatment in remission No update available.
Janet Aus 2002.02.05		diagnosed 11/00,had successful chemo treatment to reduce the tumor but developed anemia, surgery was done, is in need of further treatment
Josie AZ 2002.01.15		Finally, diagnosed 4/2001, surgery+radiation no option yet,currently on a clinical trial called SCH66336, is in partial remission and hoping for more
JR NC 2002.01.04		diagnosed 4/00, after chemo,2 surgeries even more chemo and additional treatments he is stable, feeling fine and appreciating life
Julia NC 2002.02.10		diagnosed 02/00, no surgery possible yet, tried 8 chemos and experimental drug, Octreotide has worked, good experience with alternative treatment
Maddy MA 2003.7.3	prca	diagnosed 2/99,recurrence 3/00 has received several chemos and still needs treatment; complications due to red cell aplasia, positive attitude!
Marcella I 2003.04.24	prca	diagnosed 1/00, in remission since 9/00, complications due to red cell aplasia
Mary Lou FL 2002.01.03		11/'99 diagnosed with thymic carcinoma,10/2001 new signs of cancer, waiting for the results of another CT-scan, tired of all the doctoring
Ralph WVA 2002.02.06		75 years, surgery not possible, metastatic lesions, severe damage to his heart and thyroid due to chemo; he is weak, no appetite and just hanging in
Pam TN 2002.02.10	MyG	diagnosed 8/00 when she was 10 weeks pregnant, recurrence 8 months after surgery; is currently on the Gerson therapy, has good results for MG
Roberta PA 2002.01.27		diagnosed in '93, cancer has progressed, is starting with taxol soon
Russ CO 2001.08.07		diagnosed in '98, he had a rough time during all his treatments; is fine now
Sue GER 2003.9.24		5 years free of cancer. CURED
Tammy PA 2002.01.07	MyG	diagnosed in 2/98, in remission for 6 month, recurrence 6/99, is fine now
Terry CA 2002.01.03	MyG?	diagnosed in '91, recurrence '97, since 5/99 a new tumor BUT feeling fine
Vickie OK 2002.01.28 2007.03.28	MyG	diagnosed 8/01 with thymic carcinoma; finished radiation treatment and is okay

Francesca I
2002.02.20

diagnosed 7/01, debulking surgery for humongous tumor, chemo,followed by surgery II, found skilled surgeon, recovery is extraordinary good.

Megan TX
2002.05.11

diagnosed as a teenager in '96, because of the early stage the dr.stopped the follow-ups soon,recurrence 3/00 and in remission since 1 year.

Paul CA
2002.05.28

diagnosed 6/01, surgery wasn't sucessfull so radiation+chemo followed,still receiving chemo, he has changed his life totally. What a great attitude!

Greg AL
2002.9.13

Debbie WA
2002.10.5

Staging 4b

Catherine IL 2002.01.31		72 years young, has survived 14 years, the cancer progress is very slow and she enjoys her life
Cynthia TX 2003.07.7		diagnosed 1/98, after surgery, radiation+chemo in remission, no recurrence 5 years free of cancer. CURED
Dale MO 2002.10.8 2007.3	died	diagnosed 6/95 at age 28 and given a very bad prognosis,he has survived several recurrences, was even 1 yr. stable prior a recent relapse, he has such a great attitude and has preserved his humor. A true longterm survivor!
Frank PA 2002.11.11		diagnosed in '89, several recurrences, chemo+radiation doesn't help anymore INSTEAD 1/2002 started self treatment with artemether ...... died November 2002
Geoff CAN 2003.4.24	MyG	was misdiagnosed first,diagnosed 6/99 with thymic carcinoma finally, debulking surgery,radiation,chemo... but he keeps on defying death!
Hal GA 2002.8.19	died	diagnosed 9/01 with thymic carcinoma, surgery is not an option ,receiving chemo + radiation right now, developed blood clots, tries to stay positive
Janel KS		diagnosed in 5/2000,lots of treatments so far ,I'm waiting for an update
Mike IL 2001.05.24		Several recurrences since 1994; had chemo + experimental medication, proton radiation, always interested in new treatments, a great fighter
Ralf GER 2002.02.19		diagnosed 2/01, at age 29, with thymic carcinoma had surgery and chemo several metastases left, has contacted Dr. Loehrer for treatment options
Scott MI 2003.7.3		Surgery was interrupted; tried several treatment but the cancer is growing

Steve NY
2002.02.20

So far 6 recurrences within 15 years. He's now a patient of Dr. Loehrer and was told that he need NO treatment at this time, just close watch!!