10 years thymoma.de /.org updates on your host and other patients updated:2007.3.28

START here thymoma.de

The 10th. anniversary of thymoma.de /.org

Ten years ago, about 6 month after my own diagnosis with thymoma, Joe started this web page for me. Without his initial idea and his constant work on the page for many years, I wouldn't have a chance to write to you now.
Even after I had stopped doing anything for the web page at all, we felt that I needed to focus on other things in my life, he kept the page up for others so that they would have a place to get information and find new friends.
I'm sure he could have spend his spare time which much more pleasant tasks than working on a cancer web page but this just shows the kind of guy Joe is.
Thank you Joe!

I had received my treatment in Germany and had not found any other thymoma patient to talk to. Everyone told me how rare this illness is and I got the impression more than once that the doctors would read up on this type of cancer before talking to me.
I felt isolated from all the other patients because of the special treatment I received. It seemed that there was always one more test to be performed...
At times Joe and I felt, that we were the only ones dealing with this type of cancer. As soon as I felt a bit better and had an internet connection Joe set up the web page and started to collect data about everything involved around thymoma.
Very soon thereafter I received my first e-mail from a fellow patient and from this time on, Daniel and I corresponded quite frequently.
Finally, I had found another "soul" who had some similar experiences.
Within weeks, more and more people found their way to the little community of thymoma.de and within one year we were about 20 people who had found each other by searching the web for information and a little bit of guidance.
Joe spent countless hours of making the web page the way it is now. He not only collected a tremendous amount of data and prepared it in a way so that many visitors of the web page could educate themselves about this disease, he also answered many, many mails from desperate people.
The first e-mails we received from many people seemed to start always the same " Thank god, I finally found people to talk to...... I felt so lonly.... My doctor has never treated someone before with this disease.......

For some time it was a fulltime job but I tell you it was also very rewarding. Here I was, all of a sudden capable to help others by giving them next to information, foremost HOPE.
I received e-mails from people as far away as Australia, as well as from many european countries and it payed of that the web page had been created in English and German so that more people could view the web pages content.
Over the years I have "met" many, many people online and there were encounters which have enriched me and Joe in a way, a healthy person can't even begin to imagine.
People impressed us by being courageus and brave. Others were tremendously positiv and upbeat and on top of that most of the people I wrote to and tried to comfort, have been very thankful and showed me their gratitude by following my advice.

Over the years I have been in touch with Dr. Loehrer, who is in my opinion, the most educated and dedicated doctor in the field of thymoma and thymic cancer. Many times he had answered my e-mails and shared his knowledge so that I could help more and more people in their countless requests for help. Thank you Dr. Loehrer!

I also like to say thank you to the users of thymoma.de who helped with the upkeep of the web page by donating money.
A big thank you goes to all the participants from the section " thymoma - the people". Many, many people have answered my query and shared their personal medical history with me so that I could provide this data on the web page.
These people have made it possible, in times when even many oncologists had rather a minimal knowledge of this particular type of cancer, that by comparing their stories and treatments, others could learn from their experiences.

I remember with great fondness Dale, who fought for 10 years for his survival and died last summer a premature death. His upbeat attitude has been a gift to me. Just reading one of his e-mails would make me feel better. Countless treatments had left him sometimes in a bad shape but his spirit was exceptional. Dale, wherever you're, may you be surrounded by eternal happiness.

My special thanks go to Anne, Geoff's wife, who took the time and wrote a report about her life as a caregiver, to her terminal ill husband. She was willing to write about her feelings during this time and described the difficulties she had to overcome. Her words show so much pain and sorrow and yet she mastered to live through it.
She granted us a look behind the scenes without editing it to make her look better and by doing so she gave us an insight which is priceless.
Scientific reports about every aspect of this disease are available meanwhile but a true and unique report from someone who has lived through it is just much, much more. This makes the thymoma webpage unique.

Let's continue the good work by sharing your personal experiences with thymoma.de

It has been a pleasure working for you and with you.
All the best
eVa

2007.3.28
please check thymoma personal for the new files. The above a file on this page indicates it is already at thymoma personal. New entries will be moved directly there without posting it here first
(it gets too crowded here)

Joe

eVa

I tried sending my survey back to info@thymoma.de, but it has bounced back on two different occasions. I'm going to send directly to you, hope this is OK.

David

Introduction:
Please, tell us your first name, gender and your age and maybe a short discribtion about yourself, family, profession, where you live......
Answer:
David Himes. Male. 44 years old. I live in Boulder, Colorado with my family, although I grew up mostly on the eastern coast of the U.S. I have a wife of 17 years, two boys, ages 10 and 13. I'm a software engineer. I've had excellent health coming up to this problem and have been physically active all of my life.

Diagnosis:
1. How was your cancer detected?
Answer:
Chest XRAY saw a anterior mediastinal mass, followed up with a CT scan confirmed tumor size 6.4cm x 4.1cm

2. Did you feel any kind of pain or did you notice a change of your body?
Answer:
I went to the Doctor because I felt a discomfort in my chest while lying on my left side. Sometimes would get a tingling in my left arm, as if the arm was starting to fall asleep. It wasn't the first time I'd reported this to the doctor (had reported it a year earlier), but it was the first time a chest X-RAY was ordered.
3. Do you know your staging?
Answer:
My tumor is a neuroendocrine carcinoma, large cell type, intermediate to high grade. ~ Stage II

4. Do you have a family history of cancer?
Answer:
My grandmother, who is 87 recently was diagnosed with colon cancer

5. Did you have any kind of surgery before?
Answer:
No
Treatment:
6. What kind of treatment did you receive (be as specific as possible)
-surgery (was your cancer invasive? which organs where involved?)
Answer:
I've only had a biopsy. The surgeon tried to go in with a scope below my adams apple, but couldn't see the tumor (too much in the way). So, he opened my chest on the left side of my sternum and was able to get a biopsy. The procedure left me only able to speak above a whisper, the surgeon somehow damaged my laryngeal nerve, which I didn't even know was a risk going into this.
I have surgery scheduled for April 3, 2007, at the University of Colorado Hospital in Denver, CO

-chemotherapie ( name the chemo and write down how many rounds you received)
Answer:
Haven't started any treatment yet

-radiation (what dosis did you receive)
-or a different kind of treatment
Answer:
Haven't started any treatment yet

Where there any kind of side effects involved in your treatment?
Answer:
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:
I'm depressed and frightened. I have a wife and two children (10 and 13) and I don't want them to grow up without a father. I'm also worried about missing work and loss of income because of a prolonged ordeal. I hear that the best prognosis for me is to get the tumor out intact and hope that it hasn't already spread to the surrounding tissue. I'm very afraid that it has spread and will be harder to cure.

How did you feel during your treatment
- For example: During chemo you might have felt nausiated
Answer:

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

9. Where were you treated (name the hospital with the full adress )
Answer:
Biopsy was at Boulder Community Hospital, Boulder, CO

10. If you can recommend your doctor let us know his/her name.
Answer:

11. What tip could you give a new patient?
Answer:

12. What bothered you the most during your treatment?
Answer:
I'm still a new patient and am just in the beginning of my treatment.

13. What helped you most during this period?
Answer:
Having my wife and family around me. Having my sister help with finding treatment options. The PET scan showed that the cancer hasn't spread yet, I hold on to this as my greatest hope.
Your web site gave me a huge jump start. My sister is an oncology nurse and she has been helping figure out what hospitals to look at and what questions to ask.

14. How're you feeling today?
Answer:
I feel really good except for my voice (because of the nerve damage). With a whisper for a voice, it is hard to make all the arrangements for the treatment phase. I'm not sleeping much right now.
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:
Haven't started treatments yet.
16. How do you feel before you have to go to a check up
- Are you nervous, relaxed .....
Answer:
17. What do you do to make this time as easy as posssible?
- For example: You take a friend or relativ with you
Answer:
18. Do you take any precautions to prevent the recurrence from cancer?
Answer:
Not yet. I'm starting to look at anti-cancer diets.
19. Have you made significant changes to your life after you got cancer?
Answer:
Not yet
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:
I'm optimistic because my PET scan has shown that the cancer doesn't appear to have spread yet. I'm scared, because thymic cancer is so rare and deadly. Even though I haven't even been treated, I worried that it will come back after treatment.
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:
No treatment yet.

22. Ideas/recommendation ...
Answer:
I'm learning. Right now, I'm trying to find a great surgeon and get advice on whether I should get preoperative chemotherapy.
23. Leave your e-mail address in case you want to get contacted from other thymoma patients.
http://dhimes.blogspot.com
david.himes@comcast.net

On Mar 19, 2007, at 10:50 AM, eVa & joe wrote:

Hi David,

I'm eVa, the hostess of www.thymoma.de

I'm sorry to hear about your recent diagnosis.

At your current situation it seems important for you to know in which order to proceed.

I suggest you contact Dr. Loehrer from Indianapolis, he's THE expert on this kind of cancer, and see what he has to say.

Honestly, it's better to think twice BEFORE the start of treatment in order not to loose valuable options.

There are other patients who could not have a surgery right away and had to go through radiation or chemo or a combination of both first.

With this rare type of cancer, it's important to get advice from someone who has actually seen and treated many thymomas in various stages.

A regualr oncologist might encounter in his whole coureer very few, if at all, whereas Dr. Loehrers research has enabled him to see several patients each WEEK.

Patrick J. Loehrer Sr., M.D.
Bruce Kenneth Wiseman Professor of Medicine
Director, Division of Hematology-Oncology
Indiana University School of Medicine
Deputy Director, Indiana University Cancer Center

(317) 278-7418 (office)
(317) 278-4190 (fax)

Good luck to you David.

eVa

PS.: Although it's still early in your development, I would appreciate if you start answering my query http://www.thymoma.de/query.htm .

Update Vickie (previous information here http://www.thymoma.de/re4bvickie.htm )

I am Vickie from Oklahoma. It's good to hear from you. I still go on
the website from time to time.

Yes, I have had a recurrence; it was found on the lining of my left lung in
September 2005. Surgery was not an option, as the surgeon said he could not
guarantee a complete removal and I have already had my lifetime supply of
radiation. I started chemo in October 05, after two rounds of ADOC the size
shrank by one half so I had two more rounds. The ct scan showed no more
shrinkage so we stopped the chemo. I have had ct scans every three months
since then and no growth so far. This past three months, I did not have a ct
scan, I will have one at 6 months which will be in June, 07.

I have MG and it has given me much grief the past year or so. I developed
double vision and went 6 - 8 months without any relief. I started taking
Imuran a couple of months ago along with my mestinon and it has helped with
my double vision. The draw back is my blood counts are low being on Imuran
as it is a chemo drug. I get tired, I have really bad leg cramps and my
muscles move or twitch often.

But, I am so fortunate to have a wonderful oncologist and pcp. I rely on God
to continue to protect me. I don't know how anyone could ever go through
cancer without God.

I will go on the website to see how you are doing. I hope you are doing
well. Congrats on the 10 Years!

Vickie from Oklahoma

The Questions 03.16.2007
Introduction:
Please, tell us your first name, gender and your age and maybe a short discribtion about yourself, family, profession, where you live......
Answer: Mack Age 47 Treasurer of an international non-profit located in Atlanta, GA

Diagnosis:
1. How was your cancer detected?
Answer: An x-ray was taken to make sure that a case of broncitis had not turned into phenmonia which showed the classic ôshadowö of my thymoma

2. Did you feel any kind of pain or did you notice a change of your body?
Answer: I had no symptoms at all
3. Do you know your staging?
Answer: I was state III, cell type B1

4. Do you have a family history of cancer?
Answer: Very little history of cancer on either side of the family

5. Did you have any kind of surgery before?
Answer: I had never even been in the hospital before my thymoma was removed
Treatment:
6. What kind of treatment did you receive (be as specific as possible)
-surgery (was your cancer invasive? which organs where involved?)
Answer: I had my thymoma removed. The doctor was able to get about 99.5% It was the size of a small watermelon, the largest he had seen in over 30 years of doing this type of surgery. This is really amazing because I am only 5 foot 6 inches tall and 135 pounds. He left a small section of the tumor that had become attached to a vein that goes to my heart. Because of my relatively young age he didnÆt want to cut the vein since in his words ôyouÆre gonna be around a good while longerö. If he had cut the vein it would have been a weak spot that in 20 years could create problems. Instead I had 7 weeks of radiation to kill off the remaining tumor and anything else that was too small for him to see.

-chemotherapie ( name the chemo and write down how many rounds you received)
Answer: None

-radiation (what dosis did you receive)
-or a different kind of treatment
Answer: IÆm not sure what the dosis was but it was for 7 weeks, 5 days per week. I went to a clinic close to my home that specializes in radiation treatment.

Where there any kind of side effects involved in your treatment?
Answer: Yes, I came down with radiation phneminitis (sp?) I was placed on steriods for 12 weeks while I recovered from this. That was a year ago now and I am now fine.
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: I was devastated. The only way to put it was I was scared to death, or more appropriately, of death. I could not function from the time I was diagnosed until my surgery. I cried almost constantly and could not sleep. My recovery period after the surgery was only about 4 weeks. During that time I was on an emotional rollercoaster. Some days were ok others really bad. My regular doctor did give me zoloft to calm me down that seemed to work well. Then I went for my consultation with the radiologist and when I was told all the side effects of that treatment lost it again. However, as time went on I accepted my fate and placed my trust in God and my doctors. While it hasnÆt been easy IÆm at peace with myself and my condition. IÆve been told that I have an 80% chance that the cancer is gone. I pray every night that IÆm ôcuredö and trust in the Lord that it is so.

How did you feel during your treatment
- For example: During chemo you might have felt nausiated
Answer: During radiation I felt tired especially an hour or so after the treatment. I was able to work through the entire period and didnÆt miss any days from work. My employer was very understanding in letting me leave early each afternoon to go to my treatment.

8. What was the most difficult part during your treatment
Answer: Getting used to the idea that I had joined a club that I didnÆt want to belong to, the cancer club, took me some time to accept. However, in looking back over the experience I have met some of the most caring doctors and nurses around. IÆve also met so many other cancer survivors that are in so much worse shape than me IÆm ofter think I have it pretty easy compared to them. Each day I think about my disease but am no longer consumed by it and go about my life as normal as possible.

9. Where were you treated (name the hospital with the full adress )
Answer: I was treated at Emory Hospital in Atlanta, Ga.

10. If you can recommend your doctor let us know his/her name.
Answer: Dr. Joe Miller. HeÆs not the kind of doctor that is going to act like your friend but heÆs someone you definantly want in your corner. HeÆs doesnÆt sugar coat anything, he tells it like it is. This may seem harse but with cancer you need to know the facts, not fiction.

11. What tip could you give a new patient?
Answer: Thymoma is not the end of the world. The treatments available for most patients make this a very manageable disease. Learn as much as you can about you particular case and get to the best doctor and medical facility you can. While staging is important make sure you learn your particual cell type. This seems to be much more important for long term survival than the stage.

12. What bothered you the most during your treatment?
Answer: The doctors are not going to tell you what you want to hear which is ôeverything is going to be okö, they canÆt. Cancer is serious. Again, fortunately thymoma can be managed with the proper treatments.

13. What helped you most during this period?
Answer: My family, friends, church family and co-workers. Without all of them I would never have made it.

14. How're you feeling today?
Answer: I feel great! Everyday is a new blessing.

15. Tell us a bit about your check-ups?
- Where do you get your check-ups
At Emory Clinic in Atlanta, GA.
- How often do you go for a check up?
IÆm on a six month schedule now. My next check-up is in May
- What do they do at your check up?
Answer: I have a CAT & PET scan.

16. How do you feel before you have to go to a check up
- Are you nervous, relaxed .....
Answer: IÆm nervousà.each time it gets a little easier.

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 partner takes me to the clinic so I donÆt have to go alone.

18. Do you take any precautions to prevent the recurrence from cancer?
Answer: I watch what I eat more now. Also, trying to exercise more.

19. Have you made significant changes to your life after you got cancer?
Answer: Cancer changes everything. Little things donÆt bother me anymore. If I begin to feel upset about something I just remind myself how lucky I am to be able to get upset which reminds me I donÆt need to let anything bother me to that point.

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: I guess you are always unsure. However, my additude is if it comes back IÆll deal with it again. IÆm not going to let this beat me. IÆm a survivor!

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: With the good LordÆs grace IÆm finished with my thymoma

22. Ideas/recommendation ...
Answer: Learn, ask, talk about your cancer with anyone that will share information with you. You can beat this disease. If I can, anyone can.

23. Leave your e-mail adress in case you want to get contacted from other thymoma patients.
LMTSRN@yahoo.com

Update Clive (previous information here http://www.thymoma.de/re0clive.htm )
He's a thymoma survivor for 28 years!

I am happy to contribute to your webpage as I am a long time survivor of a
Thymoma which I had back in 1979.

In those days there was not the same involvement by the patient in the
treatment etc, and I left most of the decision making to the doctors.
I don't know what stage the disease was at, but i had an operation which
removed a tennis ball sized growth, followed by radiotherapy and some months
later chemotherapy after I had a strange mixture of symptoms attributed to
the thymoma, including dangerously high calcium levels , back pains,
sweating, blinding headaches and sensitivity to bright light, and also loss
of control over half my tongue!
How much of this was due to the high calcium levels I don't know, but once
that was remedied and I had a course of 12 chemotherapy sessions, which
affected me terribly, i quickly recovered.
I believe my thymoma was malignant but only as much as it invaded the local
area, and not spread to other parts of my body.
The operation left me with only half my diaphragm working because they had
to severe the frenic nerve on one side, but my body soon learned to cope by
using muscles to partly operate the diaphragm to 40% of its full capacity.
Unfortunately when I get cold viruses i am prone to chest infections due to
my right lung not working 100%.
The chemotherapy they gave me was rather indiscriminate in that it was over
a square area about 12cm x 12cm covering part of my heart and lungs. though
doctors have never officially commented on this, i have an area on my chest
and back where there is little flesh - presumably the effects of the
radiation. in recent years I have suffered from minor heart problems and
chest congestion/asthma. I believe this is caused by the radiotherapy,
however I do not have negative feelings towards the doctors as they without
doubt extended my life by (so far) 28 years!

In spite of the above I have led a full and reasonably active life and look
and feel well and healthy in myself. I am now 56years of age

It has been my pleasure to reassure various people who have contacted me via
your website regarding the condition. I had to have 4 biopsy operations
prior to the main operation until they could positively identify my
condition and I was somewhat relieved to finally get the diagnosis compared
to what it could have been (lymphoma, hodgkins disease etc)!
Therefore I tell everybody that they have every reason to be optimistic
which I believe to be true, as long as they stay positive.

Regards

Clive

Anonymous 03.16.2007

Introduction:
Please, tell us your first name, gender and your age and maybe a short
discribtion about yourself, family, profession, where you live......
Answer:

Diagnosis:
1. How was your cancer detected?
Answer: That is a long story that includes a great deal of medical
incompetence. It first showed up on an X-ray in 2002. It was dismissed
as a tortuous aorta. It showed up again in 2004 on a CT scan when I
went the ER with complaints of chest pains. Nothing was done. It was
finally officially diagnosed in Feb. 2005 after it started to affect my
breathing by invading the right phrenic nerve.

2. Did you feel any kind of pain or did you notice a change of your
body?
Answer: See above

3. Do you know your staging?
Answer: Yes, IVa

4. Do you have a family history of cancer?
Answer: Very little. My aunt died of complications from breast cancer
back in the early 1970's.

5. Did you have any kind of surgery before?
Answer: No.

Treatment:
6. What kind of treatment did you receive (be as specific as possible)
-surgery (was your cancer invasive? which organs where involved?)
Answer: I first received 3 rounds of chemo with etopiside and cisplatin
in hopes it would shrink the tumor(s) before surgery. They estimated a
20% shrinkage after the treatments. I was then scheduled for surgery,
however at surgery they found the cancer to be spread throughout the
chest. It was deemed inoperable with lesions and satellite tumors on
the hilum, hiatus and the outer lining of the lungs.

After surgery I was given more conventional chemo consisting of four
rounds of etopiside and cisplatin. At the end of this course they
estimated the main tumor shrunk 40-50% with little effect on the smaller
tumors and legions.

In Feb. 2006 I was accepted into a Phase I trial. I have completed 18
treatments. The official assessment is that the disease has remained
"stable" with no growth, however that is under the criteria of the
trial. My oncologist's opinion is that there has been noticeable
shrinkage when you compare CT scans across the entire study. It is not
dramatic, but it is very noticeable, especially in the smaller,
peripheral tumors that are unfortunately not included for measurement
under the criteria of the trial. The manufacturer has agreed to
continue supplying the drug at no cost, after the trial expires.

-chemotherapy ( name the chemo and write down how many rounds you
received)
Answer: etopiside and cisplatin and then a phase I trial of an
experimental drug as yet un-named.

-radiation (what dose did you receive)
-or a different kind of treatment
Answer: No radiation or other treatments.

Where there any kind of side effects involved in your treatment?
Answer: Mostly what was to be expected, nausea, hair loss, fatigue, some
neuromyopathy (peripheral nerve damage) caused by the cisplatin. The
phase I drug has generated some nausea, fatigue and a little dizziness
at times, but I want to stress that it is no where near the levels
experienced with the traditional drugs.

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: Bewilderment and confusion at first. My local Doctors reactions
were confusing and you have to keep in mind that I went to the doctor
many times over the preceding years so I was confused by the fact that
they just found it recently. I also didn't get much information from
them about the disease since it was rare and they didn't know much about
it.

How did you feel during your treatment
- For example: During chemo you might have felt nauseated
Answer: See above. What I experienced was supposedly quite common for
any chemotherapy.

8. What was the most difficult part during your treatment
Answer: The surgery. I went to Mayo Clinic in Rochester MN. And they
are quite large so the experience of the surgery was quite impersonal
and quite scary.

9. Where were you treated (name the hospital with the full adress )
Answer: Mayo Clinic, Rochester Minnesota

10. If you can recommend your doctor let us know his/her name.
Answer: Yes, I do recommend him. His name is Thorvedeur Halfdanarsen.

11. What tip could you give a new patient?
Answer: Don't mess around with local Doctors. They mean well, but
Thymoma is so rare, it is out of their league and they don't know what
they are dealing with. Seek out a larger and more specialized hospital
or clinic at the first sign of any mass or tumor.

12. What bothered you the most during your treatment?
Answer: The surgery.

13. What helped you most during this period?
Answer: My children, Anibelle and Jack.

14. How're you feeling today?
Answer: OK, but that is a relative term. I have forgotten what it feels
like to be "normal" and to live life without a care in the world.

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 am evaluated at Mayo Clinic in Rochester MN. I go every three
weeks for treatment. Every treatment includes blood work and a physical
exam. Every other treatment includes a CT scan for evaluation. I am
also subject to occasional echo cardiograms as part of the phase I
study.

16. How do you feel before you have to go to a check up
- Are you nervous, relaxed .....
Answer: It has become routine.

17. What do you do to make this time as easy as posssible?
- For example: You take a friend or relativ with you
Answer: I put it in context and deal with it, like I said, it has become
routine.

18. Do you take any precautions to prevent the recurrence from cancer?
Answer: NA since I still have the cancer.

19. Have you made significant changes to your life after you got cancer?
Answer: Not really other than watching my diet, tracking my medications
and taking vitamins.

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: I take one day at a time.

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: See above. I am not a candidate for radiation since my tumors
are too invasive. I will continue on my current treatment as long as it
is "effective". My oncologist is optimistic that there are more options
available, which is another advantage to being treated at a larger
hospital or clinic since they have more access to cutting edge
technologies.

22. Ideas/recommendations ...
Answer: It wasn't long ago that thymoma in the advanced stages was
almost a death sentence with survivability less than 5 years. That has
changed now with new advances in treatment and technologies. Don't give
up or get depressed. These are promising times.

23. Leave your e-mail adress in case you want to get contacted from
other thymoma patients.

The Questions 06.11.2005
Introduction:

Please, tell us your first name, gender and your age and maybe a short
description about yourself, family, profession, where you live......
Answer: My name is Andrew; I'm an 18 year old male. I'm currently
attending college to become a research oncologist.

Diagnosis:
1. How was your cancer detected?
Answer: I came into the ER with mild chest pain around midnight; I
was diagnosed with acid reflux. The next day, I had severe chest pain
and my left arm was going numb. A CT scan was taken and a mass was
found on my thymus

2. Did you feel any kind of pain or did you notice a change of your body?
Answer: I felt like I was having the symptoms of a heart attack, with
a burning stomach ach

3. Do you know your staging?
Answer: Stage I, Type B1 Thymoma

4. Do you have a family history of cancer?
Answer: Testicular cancer, heart diesease

5. Did you have any kind of surgery before?
Answer: I had my appendix removed 2 years prior.
Treatment: laparoscopic appendectomy

6. What kind of treatment did you receive (be as specific as possible)
-surgery (was your cancer invasive? which organs where involved?)
Answer: The tumor was still encapsilated and removed via surgery.

-chemotherapies ( name the chemo and write down how many rounds you received)
Answer: none

-radiation (what doses did you receive)
-or a different kind of treatment
Answer: none

Where there any kind of side effects involved in your treatment?
Answer: My lung did partially collapse during surgery, but besides
that, just normal pains associated with major surgery.

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: I never really had any fear. Even when initial results
supported Thymic Carcinoma, I never thought about severe long term
consequences. I just had faith that all would work itself out. I
really don't know why, I was just able to accept everything thrown at
me. However by the end of my hospital stay, I was sick of the
hospital and starting to crack under the mental pressure.

How did you feel during your treatment
- For example: During chemo you might have felt nauseated
Answer: Just needed pain killers due to surgery

8. What was the most difficult part during your treatment
Answer: This seems quite insignificant when compared to cancer, but
the IV's gave me the most trouble. My veins would rollover, burst and
do flips. This was quite hard on my arms when a new IV needed to be
placed every few days.

9. Where were you treated (name the hospital with the full address )
Answer: When I went in, I was 17, and still an adolescent, so I was
taken to: Children's Hospital of Milwaukee, 9000 W Wisconsin Ave,
Milwaukee, WI 53226. They have a top notch oncology team, and if you
have a childhood cancer, will continue to see you long into adulthood.

10. If you can recommend your doctor let us know his/her name.
Answer: Dr. Bruce Camitta took good care of me.

11. What tip could you give a new patient?
Answer: Go to a major city hospital, because many doctors have never
seen a thymoma case. Even my oncologist, 30 years practicing, had
never seen a thymoma case.

12. What bothered you the most during your treatment?
Answer: I just wanted to go home. I didn't care about thymomas or
surgery, I just wanted out of that hospital. I still shudder walking
through those halls. The doctors and nurses were excellent, but I
just could not stand to be in that hospital for one more second.

13. What helped you most during this period?
Answer: There was about 2 weeks of uncertainty of what I truly had,
so family and friends really helped out. I never realized I knew so
many people until I received cards from all of my friends.

14. How're you feeling today?
Answer: I'm feeling great. I still have some minor chest spasms of
pain and some hefty scares, but I have recovered and want to learn as
much as possible to combat cancer in the future.

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 still get check-ups every 3-4 months at Children's Hospital
of Milwaukee. I get some blood work done, CT scan, and a small
meeting with my doctors.

16. How do you feel before you have to go to a check up
- Are you nervous, relaxed .....
Answer: I am always nervous to go back. Not because I fear a
recurance, but just the presence in the hospital is hard.

17. What do you do to make this time as easy as possible?
- For example: You take a friend or relative with you
Answer: I have my father come with.

18. Do you take any precautions to prevent the recurrence from cancer?
Answer: I try to eat right, as much as possible in college, and stay
fit. But I believe this was a genetic factor as opposed to smoking
and lung cancer.

19. Have you made significant changes to your life after you got cancer?
Answer: I have dedicated my life in the pursuit of a cure. I doubt
I'll be that person, but I'm gonna give it my darndest

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: I don't expect a recurance of a Thymoma, but I am worried
about other types of cancer when I'm older.

21. Status - how is your progress?
i.e. chemo didn't work, don't want to do surgery or radiation since it
is too invasive at this point.
Answer: So far, no major problems since surgery, just constant
monitoring of the reminants of my thymus.

22. Ideas/recommendation ...
Answer: Have faith.

23. Leave your e-mail address in case you want to get contacted from
other Thymoma patients.
tsallgood@gmail.com

The Questions 08.30.2004
Introduction:
Please, tell us your first name, gender and your age and maybe a short discribtion about yourself, family, profession, where you live......
Answer:
Name: Philip Potts
Gender: Male
Age: 48
Birthdate: September 6, 1955
Married 15 years (October 15, 1988), two children (boy age 7 and girl age 5), Industrial Mechanic, Humboldt, TN, USA

Diagnosis:
1. How was your cancer detected?
Answer: About March 2004 I started to lose weight. At first I thought it was because I was working so many hours. Then I started to feel tired and it became harder to put in the hours I was used to. In June 2004, I had lost 40 pounds and went to see my family doctor. He thought I might be related to my thyroid and ordered a thyroid scan. The scan detected a "spot" and a CT scan was ordered. The scan showed a 3 cm (1.25") mass in my lower neck just behind the collarbone. I went in for surgery on August 9, 2004, to have the mass removed but it was too large for the surgeon to remove. The surgeon removed a section of the mass for biopsy. No pathologist or doctor in the Jackson, TN area could identify the mass and it was sent to the Mayo Clinic for indentification. The report was returned two week later and it stated, "Thymic carcinoma with amyloid production." I have an appoitment at the Anderson Cancer Clinic in Houston, TX, on September 8, 2004.

2. Did you feel any kind of pain or did you notice a change of your body?
Answer:No pain until about three days before surgery and then it was like a sore throat. No pain really just a little discomfort. The main change i noticed was the weight loss and the tiredness/fatigue. Other things I have noticed are: my hair, both head and facial, have become more coarse and my skin is softer (soles of feet and palms of hands.)
3. Do you know your staging?
Answer: No. I have yet to talk to a cancer doctor and I am really unsure of the staging.

4. Do you have a family history of cancer?
Answer: My father died of liver cancer at the age of 78. No other family members I know of have died or had cancer.

5. Did you have any kind of surgery before?
Answer:Yes. Two operations to staple my stomach (for weight loss), gall bladder removed, mass removed from testical (non cancerous),vascetomy and vascetomy reversal (two seperate operations),
Treatment:
6. What kind of treatment did you receive (be as specific as possible)
-surgery (was your cancer invasive? which organs where involved?)
Answer: Surgery on August 9, 2004, to remove mass. (Not sucessful.)

-chemotherapie ( name the chemo and write down how many rounds you received)
Answer: None

-radiation (what dosis did you receive)
-or a different kind of treatment
Answer: None

Where there any kind of side effects involved in your treatment?
Answer: None
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: When I woke up after surgery my wife broke the news to me: "The thing was too big for the doctor to remove and it's cancer." My response was, "Well, s**t!" The first feeling was guilt. I felt guilty for having cancer. (At this point I did not know the cancer was Thymic Carcinoma.) I have smoked for 30 years and have been told many times to quit but I never did. After the report came back from the Mayo Clinic stating the type of cancer I had and I looked it up on the internet to find out what I could about it, I felt scared. Thymic Carcinoma is agressive and deadly. Now I am no longer scared but I am ready to start some type of treatment for this. As best I can tell (as of today I still have not talked with a cancer doctor) the treatment will probably be surgery to remove the thymus and the mass in my neck folllowed by radiation. Chemotherapy may be used. I am really just guessing at all this.

How did you feel during your treatment
- For example: During chemo you might have felt nausiated
Answer: N/A

8. What was the most difficult part during your treatment
Answer: N/A

9. Where were you treated (name the hospital with the full adress )
Answer: N/A

10. If you can recommend your doctor let us know his/her name.
Answer: N/A

11. What tip could you give a new patient?
Answer: Isaiah 41:10

12. What bothered you the most during your treatment?
Answer: N/A

13. What helped you most during this period?
Answer: N/A

14. How're you feeling today?
Answer: Impaitent! I want this thing out of me.
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: N/A
16. How do you feel before you have to go to a check up
- Are you nervous, relaxed .....
Answer: N/A
17. What do you do to make this time as easy as posssible?
- For example: You take a friend or relativ with you
Answer: N/A
18. Do you take any precautions to prevent the recurrence from cancer?
Answer:N/A
19. Have you made significant changes to your life after you got cancer?
Answer: N/A
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: N/A
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:N/A

22. Ideas/recommendation ...
Answer: N/A
23. Leave your e-mail adress in case you want to get contacted from other thymoma patients.
tmpotts@click1.net

Annette wrote for her mother 06.26.2004

Hello, well this all started about 4 years ago, my mother at the age of 79 was diagnosed with Malignant thymoma the tumor the size o f a football.
Well, when she went to surgery she had a positive mind and she is a very Christian woman. Nearing completion of the surgery the doctor thought he had all of the tumor then suddenly she fibbed on the table and they almost lost her, so he closed the surgery with fragments remaining. Her oncologist recommended that she take chemo, however at her age she decided that she wanted what ever quality time of life left on this earth, so she decided not to have chemo. Instead she prayed allot and is an avid fan of Dr. Andrew Weil's followed the holistic approach to recovery. Well, she had a spot an dth ecancer looked as it was growing again, agian she prayed and utilized the holistic approach, by the way she has never smoked or drank a drop of alcohol in her life, ( god bless her for that , better woman than I). At her 6month check up the Oncologist was suprised there was no sign of the cancer. Well it has been 4 years and she just had a check up, she was informed there was a spot, however as it seems at this current itme is not growing. We are very blessed to have a woman as thoughtful and dedicated to other human beings rather than herself. Maybe god has a reason for her to remain with us for a while , for selfish reasons ( being her youngest daughter I would like to think she was given an extension on life.
We were told this was one of the largest Thymoma tumors on record to date. I understand that the actual tumor was going to be sent to John Hopkins for testing and research however, it mysteriously disappeared form the hospital. How strange we are from a little town in Ohio that had a nuclear plant located in the heart of our town. When I grew up in the 70's I thought that it was common for all people to get cancer and die at 60 +-. Interesting that this was Monsanto Manufacturing Plant.
I can remember people from the Monsanto plant" putting these sticks"in our yard to measure something they really did not ssay, actually it was to measur the amount of pletomium that was in the earth, well, guess what years later the goverment said that it was unmeasurable, leading the common person to believe this was so small not to worry, instead it was off the charts too much to measure!!!
Anyway, so many people including my mother have cancer in my small town that I was raised in I cannot even begin, so many rare cancers!!!
I am sure that she would like to hear from another or others who have had or are in remission with Thymoma.
She is not on the Internet however can be reached by mail .

If anyone would like to correspond with her please contact me at:
aesint@adelphia.net.

Thank you for hearing the story.
God bless all

The Questions 01.04.2004
Introduction:
Please, tell us your first name, gender and your age and maybe a short discribtion about yourself, family, profession, where you live......
Answer: Teri/female/57/I live in Port Elgin, Ontario with my husband - I have a daughter 27she lives in Barrie, Ontario - I worked as a administrative assistant - off on longterm disability from Bruce Power Nuclear Plant - for the last 2 years - we just finished 1 year of treatments for Brian's lymphome (6 months of chemo) and radiation - he just went beck to work in August and we found out about me in October -

Diagnosis:
1. How was your cancer detected?
Answer: Routine chest x-ray for a minor surgery on my nose - removing cartlidge

2. Did you feel any kind of pain or did you notice a change of your body?
Answer: yes I had a pain in my chest for the past 3 years - very tired and easily stressed out - had shingles 2x and developed high blood pressure as well as acid reflux and hiadus hernia

3. Do you know your staging?
Answer: not yet - I will be having my thymus removed anytime now - waiting for a call - my understanding is that they need to send the pathology for examination after the surgery and could take up to 5 weeks.

4. Do you have a family history of cancer?
Answer: no

5. Did you have any kind of surgery before?
Answer: yes a complete hip replace on Dec 16, 2002 and a nose surgery in September 2003
Treatment:

6. What kind of treatment did you receive (be as specific as possible)
-surgery (was your cancer invasive? which organs where involved?)
Answer: don't know yet - mass is 3.5 x 4.1 - the sugery is called Median Sternotomy & Thytmectomy

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

-radiation (what dosis did you receive)
-or a different kind of treatment
Answer:

Where there any kind of side effects involved in your treatment?
Answer:
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: Confused - because I can't seem to get much information - regarding taking supplements before surgery ie Thymex nose spray or Lactofarrin - it's just a stab in the dark

How did you feel during your treatment
- For example: During chemo you might have felt nausiated
Answer:

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

9. Where were you treated (name the hospital with the full adress )
Answer: I will be treated at
London Health Sciences Centre
375 South Street,
London, Ontario
N6A 4G5
by Dr. Richard A Malthaner, MD, Msc, FRCSC, FACS, FCCP
Associate Professor of Surgery
Division of Thoracic Surgery
University of Western, Ontario

10. If you can recommend your doctor let us know his/her name.
Answer:

11. What tip could you give a new patient?
Answer: Research if you need to - information makes me feels like I'm doing somenthing for myself

12. What bothered you the most during your treatment?
Answer:

13. What helped you most during this period?
Answer:

14. How're you feeling today?
Answer: Impatient and tired of waiting just to have the surgery - then the wait for the staging

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:

16. How do you feel before you have to go to a check up
- Are you nervous, relaxed .....
Answer:

17. What do you do to make this time as easy as posssible?
- For example: You take a friend or relativ with you
Answer:

18. Do you take any precautions to prevent the recurrence from cancer?
Answer: I would like to know info on this topic prior to surgery and after surgery

19. Have you made significant changes to your life after you got cancer?
Answer:

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:

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:

22. Ideas/recommendation ...
Answer:

23. Leave your e-mail adress in case you want to get contacted from other thymoma patients.
brian.teri@bmts.com

Update Marcella ( previous information read here http://thymoma.de/re4amarcella.htm )

Hi eVa,

sorry if I didn't answer sooner to your mails : I often have
problems with my eyes (I have no tears at all, so frequent infections) that's
why I can stay many days without opening my computer.

Let me wish a happy 10th birthday to www.thymoma.de , the best site in the
whole net for me, the one which helps a lot to improve my life! (I'm sure it's
the same for many other thymoma patients all over the world.) I hope I'll
be here to celebrate the 15th, 20th, 25th birthday and so on.!!!

I think it's a great idea to update the site, I'll be happy to try and
answer your questions as well as I can .

Have you ever had a recurrence?

1. I am facing my first recurrence right now, about 7 years after I was
first diagnosed with a 4A thymoma.

- (In 2000 I couldn't have surgery because the biggest tumour was all around
my aorta and the doctors thought it was too risky, so they only removed two
smaller ones from left lung and pericardium. I had only three rounds of
chemo (not effective at all, so they decided to stop not to try any chemo
this time) and radiotherapy with excellent results. I also had red cell
aplasia then(I wasn't producing red blood cells at all and needed
transfusions, an average of twice a month) but since I started a therapy
with cyclosporine in 2001 (it makes my immune system to work much less), my
haemoglobin is perfect again. So I have been living quite a normal life,
working and so on, for nearly 5 years.)

- This time (may 2006) I started to have fever and cough and it didn't stop
in spite of three different kinds of antibiotics. I also had a pain in my
heart, great weakness, difficulty in breathing.. A scan showed a lot of
liquid (with no cancerous cells luckily) in my left lung and a solid tumour
about 3x7 cm scotched to my left ventricle and three other smaller tumours
in the area where I already received radiations in 2000.

Once again my doctors said surgery was not possible, but I can have a
radiation treatment where I had not been irradiated already. BUT since I
started a therapy with prednisone I have no more liquid in my lung and my
heart is working properly, so we decided to wait and keep radiotherapy for
when I feel worst again.

(What I asked to my oncologists was to see an onco-psychologist (this is a
free service the hospital offer to patients and family members), so I meet
regularly with that psy and it is an essential part of the treatment for me.
I am 100% sure that if I've had this recurrence it's because I was suffering
a lot for beloved family members and dear friends struggling with cancer or
dying from it. I find it much more difficult to face my dear ones' illness
than mine.)

2. I must say that I feel very lucky as I have a good quality of life at
the moment. I could retire from my job because of my illness, it's been
difficult to ask for this (I am "only" 48, it makes me feel so old.) but I
really have not enough energy to live as before. And now that it's done I
realise it was the right thing to do, as I have not the stress of not being
good enough at work and I can dedicate my time and energies to myself and my
beloved ones.

When I found out that I was facing a recurrence my reaction was so different
than when cancer had been diagnosed the first time. In a way I was prepared,
I knew it could happen and the first thing I've done when I came back from
the hospital was to search in your site the experiences of other thymoma
patients describing their recurrences. It's been very encouraging!

I realised that the first time all what I wanted was to kill that cancer, to
destroy it completely, to erase it from my body until the last bad cell, not
let it to destroy my body. But now I accept it as a part of me and what I
want the most is to live well, to enjoy and appreciate my life in spite of
it. Not let it to destroy my life, do you see what I mean?

Well, I hope I've answered your questions . On March the 26th I'll see one
of my oncologists (there are many at the hospital, I never Know before who I
will find) for a check-up, in may I'll have another check-up with a scan.

Bob 03.18.2007

Introduction:
Please, tell us your first name, gender and your age and maybe a short
description about yourself, family, profession, where you live......
Answer:

Hi, my name is Bob J from Spring, Texas. I'm a purchasing manager for a
subsidiary of Shell Oil Co. 63 years old, married, male, with a lovely
and supportive wife, 2 terrific daughters, and 4 fabulous grandchildren.

Date of diagnosis: June 2, 2005

1. How was your cancer detected?
Answer: Cat scan during a routine annual physical. Normally a cat scan
isn't done, since all blood work and visuals look normal. But Dr.
suggested I give myself a "gift" and have a heart calcium score to detect
if any plaque was building in major arteries. That's when they discovered
this bad boy-a large mediastinal mass just below the sternum that was
displacing large aorta, vena cava, esophagus, and larynx.

2. Did you feel any kind of pain or did you notice a change of your body?
Answer: Not really. Had a somewhat persistent cough that really seemed
more allergy-related than not. When I bent forward as when using the
computer, I would at times find myself having to take in a deep breath as
though I was short winded. Otherwise I seemed healthy except for being
about 40 lbs overweight.

3. Do you know your staging?
Answer: My M D Anderson Cancer Center Dr's wouldn't talk staging, even
when I asked. They said they didn't feel it was relevant to my treatment
at this point - that final staging could only be done after surgery. But
from the reading materials and my own research, I would say it was a Stage
I or II - encapsulated with microscopic penetration of the capsule. Post
operative pathology confirmed it was a spindle cell thymoma-encapsulated
with no infiltration of adjacent organs and no tumor cells were detected
in the outermost sections of the cut. About six lymph nodes, portions of
pleura, and pericardium were removed for pathology and a safety margin.

4. Do you have a family history of cancer?
Answer: Yes, brother colon cancer. Grandmother, stomach cancer;
grandfather, stomach cancer

5. Did you have any kind of surgery before?
Answer: None

6. What kind of treatment did you receive (be as specific as possible)
-surgery (was your cancer invasive? which organs where involved?)
Surgery - October 13th 2005
Answer: The tumor was large; about 13.5 cm x 7 cm. It was encapsulated
and was pressing on other vital organs as stated above, but no tentacles
or attachments to other organs. Oncologists said that it probably was not
operable without shrinkage via chemotherapy. Otherwise it might be
adherent to other organs and cause damage to lungs, blood vessels, and
phrenic nerves upon removal causing need for reconstructive surgery and
possible cutting of at least one phrenic nerve (the nerve that controls
the breathing movements of the diaphragm). I didn't want chemo - I wanted
it out! But the Onco & Thoracic surgeon at MDA said "no deal". Try 2
rounds of chem and then take a look via CT Scan and go from there.

-chemotherapy ( name the chemo and write down how many rounds you
received)
Treatment: Chemotherapy July thru Aug 2005.
Answer: 2 Rounds. Meds were what MDA call the CAP protocol: Cisplatin,
Adriamycin, Cytoxin, and Prednisone. After two rounds, had loss of hair,
weakness, low immune system, and horrible bout with mouth sores (mucositis
after first round) another CT Scan was taken and result was: Tumor
stable, but no shrinkage. Onco & Surgeon both agreed surgery was next
step. I said "Now that's what I'm talk'in about!"

-radiation (what dosis did you receive) Radiation was offered as an
"assurance" policy, but I declined after much research and soul searching.
-or a different kind of treatment
Answer: Much prayer and support from loving friends and family as well as
encouragement from a dear friend whom I found on thymoma.de.

Where there any kind of side effects involved in your treatment? ,
Answer: weakness, hair loss, suppressed immunity, mucositis (1st round
only - found eating ice chips during second round muted the mouth-cooking
effects of the adriamycin - it really works!)

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: By the time I got the actual diagnosis (following needle biopsy)
I was already mentally devastated. When the nurse came running in from
the CT Control room and said "Sir we see something very unusual in your
chest and your Dr. has ordered a full CT Scan with iodine colorant", I
already knew I was probably worm bait. By the time the Dr. called me (4
hrs later), and give me the news about the mass and said it could be
cancerous, I broke out in a cold sweat and my whole life seemed to flash
in front of me while the future seemed a black hole.

How did you feel during your treatment
- For example: During chemo you might have felt nauseated
Answer: Nausea was managed extremely well by meds my Onco prescribed and
suggestions made for diet and personal care. I really just felt tired,
weak, and needed lots of rest. Didn't have much energy. Enjoyed
afternoon naps, but also enjoyed getting up in the a.m. and having a big
mug of black coffee with the morning paper while visiting with a
supportive and loving mate who is a marvelous caregiver.

8. What was the most difficult part during your treatment
Answer: Time that it took to diagnose, confirm the diagnosis, taking
xrays, cat scans, pet scans, and then waiting.......waiting.....waiting.
Waiting on others to do their part. But as I've come to find out, it's
part of the process - for everyone, not just me. Others have waited much
longer. I was indeed blessed to have the care and concern of some
fantastic Dr's, P/As and nurses.

9. Where were you treated (name the hospital with the full adress )
Answer: M. D. Anderson Cancer Center, Houston, TX

10. If you can recommend your doctor let us know his/her name.
Answer: Dr. Anne Tsao was my Onco and Dr. David Rice was my Thorasic
Surgeon. They worked on the same floor in the Thorasic Center and
consulted constantly on a real time level. Folks, I know there are good
cancer centers around the country, but this place and the Dr.s, the system
they use to communicate, the phenomenal depth and breadth of their
research and data base is probably unmatched anywhere in the world. I
know everyone can't go there, but if you have the opportunity or just need
a second opinion and have the resources- GO! You'll be glad you did.

11. What tip could you give a new patient?
Answer: Be careful about trying to diagnose yourself and getting yourself
all worked up about what you don't know. Take it a day at a time. Talk
to yourself and tell yourself to shut off the tape machine in your head.
It can drive you batty, deprive you of sleep, and make life more difficult
than it needs to be for you and your caregiver. If you're a believer like
me, spend some time in a quiet place in prayer; relinquish, give it over
to God, and then rest in your faith and your confidence that whatever
happens, it's gonna be OK. You're gonna be alright.

12. What bothered you the most during your treatment?
Answer: There were some tapes that can start playing over and over in
your mind; about your mortality; the end of life; opportunities missed;
challenges unmet; a wife left alone; children without Dad, and Grandbabies
growing up without the Papaw who loves & cherishes them. These are
negative thought processes that are all natural, but if you give in to
them, they can rob you of more than is necessary. Turn the tape off.
Call your family members; talk to the Pastor, the Rabbi, the Priest. Let
it out - don't hold it in and by all means - CRY WHEN YOU FEEL LIKE IT.
Tears are a language that everyone understands.

13. What helped you most during this period?
Answer: Wife, friends, prayer, turning off the negative mental tapes, and
then resting regularly.

14. How're you feeling today?
Answer: Super! Just a little soreness in the chest.

15. Tell us a bit about your check-ups?
Followup CAT SCANS & XRAYs: Feb 06, July 06, Jan 07. Results: all clear.

- 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 get my checkups at MDA with my Thorasic surgeon. Cat Scan, XRay
and blood work every 6 months (first one is next month May 06).

16. How do you feel before you have to go to a check up
- Are you nervous, relaxed .....
Answer: Relaxed and looking forward to it. Just like the original
detection - I feel like you can only fight it if you know about it.

17. What do you do to make this time as easy as posssible? Look forward
to it-wife goes with me; eat out at a special place on the way back home;
shop for something for my grandson; feel grateful for the opportunity to
find out how I'm doing

18. Do you take any precautions to prevent the recurrence from cancer?
Answer: Eat well, eat less, walk for exercise, take vitamins & minerals,
don't smoke, stay away from smoking or polluted air, otherwise, not much
one can do except live life to the fullest!

19. Have you made significant changes to your life after you got cancer?
Answer: Yes, never miss opportunity to let those whom I love know it;
share more, hug more, and accept every invitation I receive!

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: I guess I'll have to say it like the brilliant but understated
Irish Surgeon who resected the Thymoma: "Well, the prognosis should be
good....." I would have liked to have heard "prognosis is great"
"fantastic" or some other superlative. But knowing the reputation and
background of this guy, I think "should be good" is pretty optimistic, and
so am I.

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: I'm feeling super and have regained my confidence for life. I
didn't take the proposed radiation, because of the apparently successful
resection and the path report. Like I told the radiation doc's, "if you
don't mind, I'll wait until you know what you're shooting at, then we'll
talk again." The idea of doing assurance radiation with all of it's side
affects did not appeal. They agreed that my approach was within reason.

22. Ideas/recommendation ...
Answer: There were unexpected emotional & mental after affects from
surgery and chemo treatment and the stress that all of this can cause. I
found myself falling prey to some very negative and emotionally damaging
thought patterns - going into bouts of worry about things that probably
will never happen. My recommendation is that anyone facing this kind of
trauma be aware and ask for help; at least talk to your clinic, Dr., or
hospital staff. Perhaps they can offer counseling, medication or other
therapies to help you get through it. There are no dumb questions and
you're not being a wimp! Ask and receive. If you don't receive the
first, ask again or ask someone else.

23. Leave your e-mail adress in case you want to get contacted from other
thymoma patients.
robert2199@sbcglobal.net

Update Susanne ( Mehr Info hier: http://www.thymoma.de/re3susanne.htm ) 18.03.2007

Hallo Eva,

Herzlichen Glückwunsch zum 10.Geburtstag!!!!
Es ist schön zu lesen, dass es Dir wieder gut geht und den Krebs besiegt
hast!

Nach langer Zeit habe ich gestern mal wieder auf die thymoma.de Seite
geschaut und heute bekomme ich eine mail von Dir!

Zur Zeit geht es mir nicht gut. Habe vor einem Monat erfahren, das ich
Metastasen in der Pleura habe und bald werde ich eine Chemotherapie
machen müssen.
Ausgangspunkt war ein Pleuraerguss, den ich schon damals seit meiner
Bestrahlung hatte. Er hatte mich nie so schwer gestört, das er bis zu
2 Jahren unbehandelt blieb.
Im Oktober 2006 wurde der Pleuraerguß punktiert, der Befund war aber
negativ, es wurden keine Krebszellen gefunden.
Der Pleuraerguss kam aber wieder. Und im Frebruar 07 wurde er durch eine
Operation entfernt und es wurden Metastasen an der Pleura gefunden.

Heute hatte ich eine PET-CT Untersuchung, damit wir wissen, wo sich
eventuell noch Metastasen gebildet haben.

Du siehst Eva, das Thymom hat mich wieder eingeholt. Dabei war ich gerade
dabei mein Leben neu zu gestalten.
Nachdem ich meine Job nicht mehr ausüben kann und ich 2 Jahre zuhause war,
begann ich im Juni 2006 eine Umschulung zur
Arzthelferin. Stecke jetzt mitten in der Ausbildung und ich hoffe, nächstes
Jahr meinen Abschluss trotzdem machen zu können.

Im Juni wollte ich heiraten, einen ganz besonderen Mann, der seit dem immer
an meiner Seite ist. Ich bin am überlegen, ob ich die Hochzeit
verschieben sollte oder nicht.Ich weiß nicht, wie es mir während er
Chemotherapie ergehen wird.
Deswegen habe ich auch gestern bei Thymoma.de nachgesehen, wie es anderen
ergangen ist. Und sicher interessiert es mich auch,
wie es den Menschen heute geht und ob sie den Krebs besiegt haben.
Wäre schön, wenn sich viele wieder melden würden.

Was mich seit dieser Zeit begleited, sind die wöchentlichen Sitzungen bei
einer physiologin. Meine Depressionen sind mal stark mal
weniger ausgeprägt. Es gab aber auch Zeiten, in denen es mir sehr gut
ergangen ist!

Liebe Eva, das ist das Neuste von mir, leider nichts gutes!
Alles Gute für Dich, mach weiter so!

Gruß Susanne

2007.3.12

Update Jill ( read here her initial report http://thymoma.de/re1jill.htm )

Thank you for sending me this update information. I have been two years
cancer free since January. I had my ct scan last week and will be seeing
the oncologist the 26th of this month to receive my report.

I can never thank the two of you enough for the information on your website.
Most doctors do not realize that thymoma is cancer. I was not even sent to
an oncologist.

I did not really understand that until I saw Dr. Loeher. He was very kind
and reassuring. It was worth the trip to see him. I did end up having
radiation treatment as the margins around the tumor were very narrow. I
don't know if that was a good decision or not, but at the time, I was so
scared it would reoccur.

I have not had a reoccurance.

My life is not the same but not worse. I have a different outlook on life.
I try to value each moment. I have recently had some revision done to my
scar and that was helpful emotionally. I work with a nutritionist and I eat
organic most of the time! I want to stay healthy and see my children grow
up! It has taken me all of these two years and my recovery still continues.
I am forever changed and so is my family but we are healing emotionally and
physically.

Thank you for all you have done for theymoma patients.

Jill Joos

It is strange that you are so close. It is such a rare condition, that
usually most people have never heard of thymoma. I have a friend whose
uncle had it and it reoccurred 30 years later and another friend of a friend
who lives in Maine who had one removed about 15 years ago. I hope that Eva
is well. I have had difficulty with depression as well since all of this.
I take a vitamin D supplement ( I have blood work done to monitor the level,
at the beginning of treatment it was 16 (s/b around 50) and am around 24
now). It is really helping as well as a health dose of sunshine.

Update Steve ( previous information here: http://thymoma.de/re2steve.htm )

I have not had a recurrence. I have a CT-scan once a year of my chest.

I am 63 years old. I am active, healthy as far as I know, and happy.
I have not made any adjustments or changes in my life due to thymoma.
Naturally I worry about a recurrence, but mainly around the time of my
CT-scan. It feels like the thymoma is ancient history for me--I hope
it stays that way.

Thanks for maintaining the thymoma.org website. If I can be of any
further help, please let me know.

Update Darlene (previous information here: http://thymoma.de/re2darlene.htm )

Hi,
I love your website. It has been a great source of information and comfort for me.

I am still cancer free. It has been a long three years. I have several side effects from the
radiation treatments I received. I have fibrosis, 20% of my left lung has been damaged. I have to
stay on top of fighting colds, my allergies, etc. I can not afford to get anything in my lungs.
My esophagus also has been damaged. I have acid reflux. I will have to take Prilosec for the rest
of my life.

I have basically returned to doing everything I did before my cancer. I do not have the energy I
once had, so this makes me a little slower at the activities.

I am now allergic to sulpher drugs. I do not know if this has anything to do with my Thymoma, but
I could take the drugs before all of this happened.

I have had to be on steroids a lot due to the problems in my lungs. I am now experiencing joint
pain in my hips.

I am now down to CT scans every 6 months. I will be doing that for 3 more years. Then I will go
to annual CT scans.

Thank you for all you do on your website. I hope you are feeling better.
Darlene

Howdy, This is not Dale. I am his partner, L. I am sorry to report to you that Dale died July 5, 2006. It was death by doctor. He was overdosed on Morphine by an incompetent nursing home doctor where he was living while recuperating from back surgery to repair cracks caused by several years of prednisone. He had just turned 40 years old.

As you may know if you combine deaths from correctly prescribed medications with incorrectly prescribed or distributed medications or therapies they add up to a million and a half dead per year in the US. This is the number one killer according to the world health organization study.

As far a Thymoma goes, we have documentation that all his massive tumors had shrunk substantially in the year and a half he was using glyconutrients. As I have learned in three years on glyconutrients, the body WILL remove its own cancer and it does not matter what type of cancer it is if it gets the right nutrition. I have seen it happen over and over.

I now know what Dale should have done. Of course hindsight is better than foresight. If I had only known then what I know now, Dale would still be here. He was my best friend and my life will never be the same without him.

If anyone has Thymoma, I would beg them to spend as much as they can possibly afford for the glyconutrient complex powder and the normal amounts of antioxidants, phytosterols and food form vitamin/mineral supplements he was on. We were way too timid with Dale. Of course money was also a problem. Also I did not know about a rare and severe Cancer study that is now available being run by a non profit group that gives glyco products at cost. Their regimen runs about $300 per month, which is almost as much as we were spending but they get it for cost while we get it for wholesale. This means $300 worth in the study is way more product than an associate can get for that. I know, you say how can $300 worth of stuff do anything when $3,000 or $30,000 worth of standard medical therapies can't do much? Well it did work for Dale.

He spent 6 years on prednisone for the tumor on his spine and it kept him walking, This deteriorated his spine with the side effect of osteoporosis and one day in Jan 2006 he got out of bed and broke three vertebrae. After two weeks trapped in his room unable to come down my stairs without severe pain, I convinced him to go to the doctor and see what was wrong and they found the fractures.

They put him in a nursing home and gave him a vertrabraplasty to superglue those cracks. He was much better the next day. He spent the months of February to April recuperating and was doing physical therapy. He was just about to be able to climb my stairs again when they started dicking with his pain meds. They were paranoid that he was getting too much morphine so they basically stopped giving him any for about a week. This really wore him down and he begged me to insist that they give him what his real doctor had had him on for years. Instead they just upped the amount to about three times what he was used to one morning. An hour later they found him not breathing and rushed him to ER.

He spent two months trying to get back the use of his lungs. As you know morphine shuts down the lungs. He spent most of that time on a ventilator. The doctors would not allow the glycos in. I had to sneak them in. On days he got them he did pretty well.

On the few days I gave him high levels of glyconutrients he actually got off the ventilator but since I could not be there several times every day to sneak them in to him, he was up and down as he was able to get this nutrition. So the ER docs are also somewhat responsible for his lack of recovery. Because of this situation, we decided with his family to move him down to southern Missouri where his family lives and we found a hospital that agreed to give him the glycos. The last time I saw him alive he was on a cot strapped in for the helicopter ride to West Plains MO. He was unable to recover after those months on decreased levels of glycontrients, and I am sure the cancer had come back to life because of that. He was kidding around with his sisters about 45 minutes before he breathed his last.

Now that I know how the immune system works, I know that no one should ever get cancer. We get it because of toxins and because we don't get the right nutrition to remove those toxins and repair the cellular communication system that allows the immune system to even know there is cancer present. As we know cancer is normal. Everyone has it. It is a part of every cell's life and death. If the white cells see the cancer they destroy it while it is only one cell big. This is the normal function of the body. If the body is lacking the 8 monosaccharides in the diet then its communication system is missing and the cancer can grow to large enough size to kill you.

If you want to know more, please let me know. No one should ever have to deal with cancer and if you have it there is a way to make the body see it and destroy it. If what I learned from Dale can help someone else, it would make me very happy.

L.

Update Debbie ( stage 4A)

1.) Have you ever had a recurrence?
No. It will be six years this summer,without a recurrence.

2.) How is your quality of life NOW?
- Do you live the same way you lived before your illness or did
you have to make adjustments?

The quality of my life is just about the same, but
much more challenging as I hope for continued good health. It seems as
if I am stuck (mentally). If there is just the littlest thing wrong with
me, I wonder if my cancer is back.

3.) Are there any longterm side effects influencing your current
lifestyle?

The long term effect of this disease
is hard on my family too. It seems like any illness is a reminder of
that day that I was diagnosed and the fear it brought us.

I appreciate your hard work on this web page.

Update Julia Middleton

Thanks for keeping the site up to date. I know it has been a huge help for me.
I am now passing 7 years w/ stg 4 thymoma. I have been on a chemo mix the last year and a half that has helped hold it steady. It is: Alimpta, Avastin (+Cisplatin the first 6 months).

As far as my life style, I am able to get around fine. I can't do alot of the sports activities or big hikes I used to, so instead I find other things.

My brother is doing a fundraiser for the Indiana University Thymoma Foundation by doing an Ironman in April! He's doing all the physical feats I could never do.

Update from Kim Landsford:

1.) Have you ever had a recurrence?
NO

2.) How is your quality of life NOW?
- Do you live the same way you lived before your illness or did you have
to make adjustments?

THE PAIN FROM THE SURGERY TOOK SEVERAL YEARS TO
RECOVER FROM. TAKING PILATES CLASSES HAS HELPED QUITE A BIT WITH THE PAIN.

3.) Are there any longterm side effects influencing your current
lifestyle?
I STILL HAVE SOME PAIN FROM MY SURGERY, BUT NO MAJOR LONG TERM
SIDE EFFECTS TODAY.

Please feel free to add any additional information you might think of being
beneficial for others.
TAKING PILATES CLASSES HELPED ME RECOVER FROM THE
PAIN OF MY SURGERY.

Update Linda ( Original stage 2)

I am sorry to report that Linda passed away in my arms on the morning of
Dec 24,2005. If you "google" her name with "linda duff sonora ca" you can read
her obituary I wrote two weeks before her death.
Jim

Update Nancy

1.) Have you ever had a recurrence?
If YES, pls. elaborate when and what treatment you received
Yes, about two later I had a recurrence, at that time I had a thorocotomy to remove tumor attached to the diaphram, no chemo as they felt they had it all. Less than 2 years later I had some nodules in the lung area, after bisopy and knowledge the thymoma was BACK Since that time the tumors have been stable. I have been flying back to Indiana with fellow thymoma patient Diane (to which we became friends thru this site) to see Dr Loehrer and see my cancer Dr here in Calif every three months. I will be going back to Indiana in April
2.) How is your quality of life NOW?
- Do you live the same way you lived before your illness or did you have to make adjustments?
- Are there any longterm side effects influencing your current lifestyle?
I pretty much live the same way, I am not sure if all my aches and pains belong to the thymoma or just getting older. I have had a few trauma's added to my life since finding out I had cancer. The biggest one was four years ago and the death of my youngest son. So I think that has played more of a change in my life then the cancer did. Long term side effects was after the thorocotmy and the pain from the operation at that time they did put me on morphine patches but that has gotten much better. The Drs do tell me excercise would be a benefit to me but still fell I have a allergy towards excercise. Long term side effects are also I have many more Drs on the payroll heart, lungs etc.
Even thou its has been over 6 years that time between the CT scan and the visit to the Dr. are just as scary. That is a very emotional time for me.
I truely believe with this cancer one must get that expertiese from either going to Indiana or the larger hospitals. For many years people told me to get a second opinion but I felt comfortable where I was at (and still do) I had this website to see that what my Dr was telling me was the same as what others were doing also. The only problem was that with this cancer being so rare and not a standard treatment there comes a time I do believe you need that second opinion.. I would not give up my Dr here but I am thankful he is willing to work with me and my going to Indiana.
I am so thankful tha Eva and Joe started this website. There are so many friends I have gotten to know. Some I haven't talked to in a long time, Others are no longer with us, who had been my rock during my difficult times (Frank Koegler and Geoff (Anne) Others I have met in person and know that others share my same difficulties (DIane, Mike andMary) So if you do come from a small medical community I do believe in at least getting a second opinion and not because any thing is wrong with the first one but knowledge is such a great tool.
And to Diane, thanks for flying with me even putting your life in danger in the Chicago airport in trying to get me that wheelchair because I couldnt walk as fast as you! And our trips to Nordstroms have been very productive! I think shopping has proven to be mentally uplifting. Much cheaper than Zoloft (hahahah)

Update Tammy

1) Yes, I had a recurrance in Jan. 2005. My doctors have been watching a
"nodule" on my left lung for a few years prior and decided to take a needle
biopsy. The biopsy tested positive for malignant thymoma. I had surgery to
remove the nodule and followed with 6 weeks of radiation treatments. I've
been following up with CAT Scans every six months and they have been good!

2) My quality of life is the same as it was before my initial diagnosis of
Stage 4A thymoma back in 1998. I do not have any side affects and consider
myself perfectly healthy.

Thank you for contacting me. Hope all is well with you!

Regards,
Tammy