Response Jill updated:2006.1.4

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Please, tell us your first name, gender and your age and maybe a short discribtion about yourself, family, profession, where you live......
Answer:Jill, female, 58,Mother of two married daughters and grandmother of six, three girls and three boys from ages 14 to 19 months. Married,
working full time. Live in Metairie, a subdivision of New Orleans, La.

Diagnosis:
1. How was your cancer detected?
Answer: Chest x-ray for pain in chest, thought I had a broken rib or plueresy. It hurt when I laid on my side, but it was felt that this was
not a symptom of the thymoma. I really had no symptoms.

2. Did you feel any kind of pain or did you notice a change of your body?No sympthoms at all. Thought I broke a rib from getting hit by beads
in the chest at Mardi Gras
Answer:

3. Do you know your staging?
Answer: Stage IV

4. Do you have a family history of cancer?
Answer: Breast cancer in aunts and lung cacer in grandfather.

5. Did you have any kind of surgery before?
Answer:
Yes, one ovary removal, tonsils, and appendectomy
Treatment:
6. What kind of treatment did you receive (be as specific as possible)First doctor I saw wanted me to go to the hospital immediately for
surgery. I refused and asked to see an oncologist. Initial visit thought to be lymphoma or slight possibility of thymoma since it is so rare.
I had a biopsy that verified thymoma. I had a large tumor that was on my lung and on pericarium of my heart and on my phrenic nerve on left.
Oncologist, Dr. Jayne Gurtler, absolutely the most fabulous person and oncologist in the world, recommended that she and I work with Dr. Merril
Kies,also fabulous person and oncologistat, at MD Anderson for best results since MD Anderson treats approximately 30 or more thymomas a year.
Dr. Kies and Dr. Gurtler agreed on three to four treatments of chemotherapy because my thymoma was too large to remove in its current size.
They gave me cysplatin, cytoxin and adrenamyacin and predisone. I was very sick. Lost hair, nausea, tired. Dropped white count and had ferver
nd ended up in hospital for treatement during the chemo. Had two treatments and tumor reduced half in size. After third treatment, it was
believed that my thymoma was growing again. Dr. Gurtler called Dr. Kies and they scheduled surgery immediately. That was about a two week
wait. These people are really aggressive and great doctors. I had the surgery by Dr. Swisher at MD Anderson, once again a fabulous person and
fantastic surgeon. Complete resection of thymoma. Actually, it was not growing back. Dr. Swisher said the chemo knocked the tumor for a big
loop and really reduced it. All dead tissue was removed including part of my pericarium and and some small areas of the lung. I lost my left
pherenic nerve. It was not cut but getting the thymoma off of it upset it and it refuses to work. I have a little shortness of breath but not
bad. No complications from surgery. I then had radiation for 5 and a half weeks. I have some scarring on the lungs from radiation but not
anyth
ing really bad.
-surgery (was your cancer invasive? which organs where involved?)My cancer was invasive, lung and pericarium and phrenic nerve.
Answer:

-chemotherapie ( name the chemo and write down how many rounds you received)
Answer:see above

-radiation (what dosis did you receive)see above not sure what doses
-or a different kind of treatment
Answer:

Where there any kind of side effects involved in your treatment?
Answer: normal nausea etc. nothing abnormal or not to be expected.

7. Feelings - Emotions
What was your feeling when you heard your diagnosis?
( The answer to this question might be very helpful for all new patients!)
Answer:Fear that I would die. My oncologist said I should not die but my life would be affected about 75% of what it was during treatment.
She was right.
Once we cried and went a little nuts, we all agreed to stop it and start being positive and to do cancer well.
How did you feel during your treatment
- For example: During chemo you might have felt nausiated
Answer:I felt that I was in exceptionally good hands and my care was phenomenal. I had tremendous support from my family. My daughter took
over my life and made me read books aboout cancer and research about it. She bought me a juicer and made me juice. She bought me vitamins.
Many people gave me books on nutrition. All of my family and friends had everyone all over the world praying for me. Every religion, every
language everybody they could find. It was impossible for me not to survive this with such support. I went to healing masses and prayed. This
has made me and my family stronger people. Even my grandchildren have grown from this experience.

8. What was the most difficult part during your treatment
Answer:Chemotherapy

9. Where were you treated (name the hospital with the full adress )East Jefferson Hospital for biopsy and insertion of my porta cath and Dr.
Jayne Gurtler practices out of East Jefferson, and Dr. Monsuer for my radiation.
MD Anderson for Dr. Kies and Dr. Swisher where my surgery was performed.
Answer:

10. If you can recommend your doctor let us know his/her name.
Answer:MD Anderson, Dr. Kies and Dr. Jayne Gurtler in Metairie Lousisiana.

11. What tip could you give a new patient?
Answer:Get the best and most aggressive physicians that know about thymomas and have enough sense to tell you that they need to consult with
someone who knows more about such a rare type of cancer. The physician that biopsied my tumor wanted to schedule me for surgery immediately. Due
to research my daughter had done, we knew that was not the right thing to do. Dr. Gurtler and my family all agreed no surgery first. Chemo
first, then surgery.

12. What bothered you the most during your treatment?
Answer:I had the most fabulous treatment. Everyone I dealt with was knowledgeable and caring. My family was fabulous and very supportive.

13. What helped you most during this period?
Answer:Prayer and suport from my family. Also, at MD Anderson there is a lot of information about visualization and meditation and using your
mind to help in your healing. This was wonderful for me and has introduced me to a new level of taking care of myself. When my daughter was
researching on the computer one day early in my diagnosis, she asked me to come and read information a lady who had a thymoma had on her the
website. The lady imagined that she had 7 dwarfs in her body hammering away at her cancer. I was very upset about this and told my daughter
that this is crazy. Fool that I am. Later at MD Anderson I realized she was much further along in her taking care of herself through
visualization and much smarter than me. I was the crazy one. I now concentrate on Knights in Shining armour riding on horses throughout my
body fertilizing good cells that will overtake the cancer cells. I think that in all difficult situations, you can learn many new things that
will make yo
ur life better.

14. How're you feeling today?
Answer: Fantastic. During all of this, I missed about 8 weeks of work and some of that time I was working from home.

15. 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?
Answer:
I have check ups every 3 months. I am a year from my radiation treatments. I see Dr. Gurter, then three months later I see Dr. Kies at MD
Anderson and then 3 months later I see Dr. Gurtler and then 3 months later Dr. Kies. I get Cat scans every three months and x-rays every six
months and blood test each time. I am sure that I some point I will go to six month intervals and then yearly intervals.
16. How do you feel before you have to go to a check up
- Are you nervous, relaxed .....
Answer:I am relaxed. My cancer is gone and never coming back.

17. What do you do to make this time as easy as posssible?
- For example: You take a friend or relativ with you
Answer: My daughter that lovingly tries to rule my life comes with me every time. I love it.

18. Do you take any precautions to prevent the recurrence from cancer? I pray, meditate, and try to eat better. I was doing yoga but I have
stopped. Exercise is the hardest thing for me to fit into my life. I keep saying I am going to do better.
Answer:

19. Have you made significant changes to your life after you got cancer?
Answer: Yes, I enjoy it much more. I try not to sweat the small stuff. I have a better work life balance. Actually thet crazy hurricaine
Katrina that has devastated New Orleans, hasn't been as bad as cancer.

20. How 're you feeling about the disease
- are you optimistic about outcome from your cancer
- are you more afraid that it might return
Answer: Yes, very optimistic.

21. Status - how is your progress?
ie. chemo didn't work, don't want to do surgery or radiation since it is too invasive at this point.
Answer:
Progress is great. I am only getting check ups. I did everything aggressively. My physicians and my family and I declared war on this tymoma
and we won.
22. Ideas/recommendation ...
Answer: Be postive, get the best physicians and research, research research. Pray and have faith and use your mind to heal your body.

23. Leave your e-mail adress in case you want to get contacted from other thymoma patients.
casslarsen@cox.net This is my loving daughter who spends a great deal of her time researching this disease.Good luck to all of you.