Frank
updated:2002.11.11
updated:2002.11.11
|
Frank
updated:2002.11.11 |
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| Please, tell us your gender and your age and maybe a short discribtion about yourself, family, profession.... | 2001.07.3 My name is Frank Koegler. I'm 49 and live in central Pennsylvania (State College area) with my wife (married 27 years) and family. |
| How was your cancer detected? | My cancer was detected by an X-ray in the emergency room. |
| Did you feel any kind of pain or did you notice a change of your body? | I had a lot of pain due to pleural fluid build up |
| Do you know your staging? | My staging was (I think) 4b. Involvement with paricardium, lung tissue, major blood vessles |
| Do you have a family history of cancer? | My mother died of breast cancer at age 46, my sister has had breast cancer 12+ years ago and is doing well. |
| Did you have any kind of surgery before? | I never had any surgery before my cancer...except tonsils out as a child. |
| What kind of treatment did you receive
-surgery |
My surgery consisted of opening my chest from my collarbone to diaphragm. (I forget the term for this) The cancer was invasive, I lost part of the pericardium (was patched with gore-tex fabric!), upper corner of lung, and they could not get what was wrapped around major arterys. |
| -chemotherapie | In 1989 I recieved 6 treatments of adriamycin, cisplatin, and cyclophosphamide. I had 3 ineffective treatments of the same drugs in 1998. Starting July 6, 2001 I will recieve carboplatin and taxol for 8 treatments every 3 weeks.(6 months) |
| -radiation | My dosage was determined by my body mass. it was the maximum allowable dose. I do not remember the units. I have had this 3 separate sets of treatments. The last time I recieved treatments twice a day for 8 weeks, total of 80. It worked well the first two times, but not this last time. My hospital had gotten a linear accelerator (more effective and focused) for the last 2 series of treatments.My doctor says that I really am not able to get any more radiation. |
| Where there any kind of side effects involved in your treatment? | The chemo made me very sick. The first set my wife recorded my throwing up every 2 minutes for the entire time. There is also a mental fog that is very encompasing while the treatments go on but some memory loss continues. Not that I was a mental giant before, but I still have some memory problems. The radiation side effects were mostly lots of fatigue, and soreness both on the skin and deep inside. Most of it goes away, eventually. Both include a loss of appetite. |
|
Feelings - Emotions What was your feeling when you heard your diagnosis? How did you feel during treatment? |
When I first found out I had cancer, I was very sad. In part
this is due to seeing my mother slowly pass as a child. It is a road that
no one should have to go down. Having been on this road for 12 years, I
have come to terms with my limited future and accepted that I and my family
have had years to deal with the idea. Many people are taken away in an instant
and never have a chance to say their good-byes and words of wisdom. Every
day of living has been a gift. Oh yes, I felt nausiated!! Many times I ate because I knew I had to. I had to read or think of something else so I could get the food down. Even thinking of the hospital or the nurses made me ill. Also I would run into co-workers at times and look healthy but feel rotten. They meant well saying that I should come back to work, I looked good, but I felt kind like I was playing hooky. I was able to tell them that they would not want to ride a bus (my job as a driver) with someone like me at the wheel. |
| What was the most difficult part during your treatment | The most difficult part was feeling poorly and draging myself off for treatments to feel even worse. My last radiation set of treatments I felt went on several days too long, it really made me hurt. I couldn't stand to hear our kitchen microwave run because it sounded like the treatment machine. |
| Where were you treated | Centre Community Hospital, Park Avenue, State College, Pa 16801 |
| Can you recommend your doctor? | My oncologist is Dr. Richard Dixon. He does a good with currently available treatments. The NIH in Washington, DC., has some experimental trials available (for those who qualify)and I may seek their help in the future. |
| What tip could you give a new patient? | Your life will be different than before, but you will still have years and one should make the most of them. Do some things that you enjoy. I do low scale sports car racing (autocrossing, racing one car at a time around cones) in my Dodge Neon. I've gotten a lot better and enjoy it, although I won't continue once I start chemo. My guitar playing has improved. Some people collect stamps, this is what I do. |
| What bothered you the most during your treatment? | I think it was one oncology nurse who would nag (it was her job).... "take your mensa, remember to take your mensa now" The chemo rooms are not at all jolly and each day it felt as if I was handing myself over to the torturers. I have to do it again soon and thinking about it kind of makes me ill, so I won't think about |
| What helped you most during this period? | Positive thoughts like how sweet my wife is, maybe I can do something in the future I would really enjoy, things that I want to tell my kids, projects that I want to finish. Maintaining a sense of humor is important and I try to brighten the lives and be a help to those around me. Lastly this is the time find God through his son Jesus, and take his comfort. For those agnostics, you don't have anything to lose by finding faith and putting it in God. And for those athesists....what? You've never been wrong before? |
| How're you feeling today? | In 4 days I start chemo again, so I am apprehensive. I am showing signs however that this is necessary; pain in my back & chest, shortness of breath. Therefore I feel that it is ok for me to go through chemo again. |
|
Tell us a bit about your check-ups - Where do you get your check-ups |
I was getting check ups about every 6 months. Usually this consisted of feeling for tumors, listening with a stethoscope. Any changes or problems would call for a x-ray or CT scan. |
| How do you feel before you have to go to a check up | I generally hope for the best and acknowledge that the worst could also occur. I seem to accept this all pretty well. I knew that this would be my future after my first diagnosis. |
| What do you do to make this time as easy as posssible? | Usually my wife goes with me. After chemo I am not fit to drive. |
| Do you take any precautions to prevent the recurrence from cancer? | Strangely I've always had a fairly healthy lifestyle. Lots of homegrown vegetables, salads, small portions of meat. I used to jog some and have kept very busy. Also I take some balanced vitamins. Perhaps this is why I am a 12 year (so far) survivor. |
| Have you made significant changes to your life after you got cancer? | The only significant change has been to try to do things that I enjoy more often. |
| How 're you feeling about the disease | My cancer has returned 4 times so far but I'm still here and am not going out without a fight. |
| Status - how is your progress?. | If this round of chemo is not effective, I'll apply for clinical trials. |
| Ideas / recommendation | Use the internet to explore new research and treatments. Sometimes you can call the doctor or researcher in person. There is some evidence that shows that self generated depression and worrying about situations that you cannot change can make a person more susceptible to cancer and poor health. I am not suggesting that one live in denial, but rather acceptance and getting on with life. Even under the best circumstances life has a limited time frame. I prefer to be around positive people. |
| Contact | fkoegler@cdt.infi.net |
|
Frank's
Story
updated:2001.07.03 |
Dear Sue,
Hello. I appreciate your web site. It is a welcome resource. I'm a long term
survivor of thymoma.
Unfortunately, I'm going into battle again. I'll write a letter and
then answer the questions.
My name is Frank Koegler. I'm 49 and live in central Pennsylvania (State College
area) with
my wife (married 27 years) and family. We have 4 children, the youngest
is 17, so they are really all young adults now. I wasn't able to finish
college and support a family, so I spent most of my working years
driving a city bus.
In 1989, when I was 37, I was working on the house that I built. After a
day of hanging drywall I awoke in the night with a severe pain in my
chest. It was so bad that I insisted my wife drive me to the hospital
emergency room. Fortunately (or by God's grace) the doctor on call was
an oncologist (and still is my oncologist). I had pleural fluid build up
in my lung caused by a large tumor, my thymoma. I had no clue that it
was there until that night.
After surgery (it was very involved, stage 4b(?)) and chemo I went
along until 1991 when symptoms reappeared and received radiation. It was
my "lifetime maximum dose" and tolerated fairly well. In 1989 symptoms
again reappeared and again I received ineffective chemo plus my "maximum
radiation dose". In the fall of 2000 again I had symptoms, and a high
level of radiation. Probably my last radiation treatment. 2 weeks ago I
had a follow up CT scan which showed my tumors had grown. On July 6th I'll
be getting a new chemo (I think this is a NIH thymoma study) with taxol. I'm
still somewhat active, I'll mow a little grass today (riding mower), although
I've been
off work since 10/2000.
The first time I dealt with the cancer, I knew that it is the result of
us living in a fallen world. Like in Genesis 3 when after Adam and Eve are
thrown out of the Garden after falling victim to Satan's lies, they are
told that thorns will infest the ground, I see cancer as one of those
thorns or weeds. It is not my fault nor was I chosen for any special
hard time in life. It is the nature of the world that some things like
this happen. Or maybe it is like a comic I saw years ago where a man
wakes up in a raging torrent of water and debris and exclaims "Yikes!!
A
flash flood!! I might have known!" Who can expect the unexpected? This
past reoccurrence reminds me of the movie Men in Black where Edgar (yes,
he's a jerk) complains that the only thing worthwhile in his life is his
pick-up truck. A spaceship streaks out of the sky and crashes to land,
right on his truck. Edgar looks out the screen door and says "figures".
Somehow I find that humorous and also reassuring. There is always a
chance that what you don't want is just what will happen.
I have complete faith in God and salvation through Jesus by accepting
him as my savior. Heaven will be better and no, there won't be any
thorns infesting the ground there. Still, I am not in a hurry to leave
my dear family. Besides, I still have some trim work to do on my house.
Hello, I hope all is well with you. My situation is now up in the air.
I had a CT scan which showed that my taxol chemo was not working.
Previously radiation was not working either.
My plan is now to find and get on a clinical trial for new experimental treatments
using viruses
to trigger an immune system response. There are several coming up in spring
of 2002, but that
is no assurance that I would be picked or that it would be effective.
Currently I am taking oxycotin for pain (20mg twice a day), and also dexamethasone,
a mild
steroid that tends to keep the tumor smaller (2mg twice a day).
Now that I am not taking any chemo I actually feel very good.
I meet with my doctor in 2 weeks to map out a plan, but really most of the investigation
has been
done so far by me or a friend. Yes, I have heard of thymoma in the adominal
section. I think that
some thymoma patients eventually die due to lung and diaphram pressure from
the tumors.
One of my tumors is there pushing on the bottom of my lung/diaphram/liver area.
My tumors
are mostly thymus tissue, not just cancer. This makes them a little slower growing
but harder
to kill.
So, I don't know at all what the future holds but I enjoy every day that I have.
I am now officially "retired" from work and spend most of my time working on
my house doing
interior trim and a little work on my cars. It is my strange idea of fun.
I did a lot of research, and so did my doctor, into alternative treatments because
my tumors
were not responding to chemo or to radiation.
There is not anything currently open that I can get into. Most research is aimed
at getting a
body of reliable data that can be used to get research funding and ultimately
FDA approval for
the drug or treatment. Saving every person with cancer is not one of the goals.
My tumors (and I suspect most thymoma) are slow growing and not blood supply
sensitive,
they can exist off the lymph system.
This makes them unable to be treated by (the new experimental) anti angiogenesis
treatments
which cut off the blood to tumors. It does work on faster growing tumors in
mice.
Yahoo and MSNBC have health news that at times deals with cancer.
There was an article on fighting breast cancer with a herbal remedy for malaria.
I am now in my second day of a self directed treatment using artemether (wormwood
extract)
and an iron suppliment.
I am excited by at least doing something, as I have had no treatment since October
2001.
A researcher in Canada who uses viruses to treat tumors is also a distant possibility.
I will let you know the results whenever enough time and treatment have passed.
In general I feel pretty good.
I have to say that I'm doing well also because lots of people (many of whom
I've never met)
are praying for me.
I have not had MG or its symptoms.
2) Other than cancer, I'm in good health
a) 2-1989 Surgery for involved tumor, class 4, followed by chemo
b) 6-1991 "lifetime maximum dose" of radiation due to cancer return
c) remission until 1998, treated with chemo and radiation
d) 10-2000 to 10-2001 treatments with radiation and chemo. no longer effective
f) 1-2002 started self treatment with artemether (wormwood extract) and iron
suppliment
I read somewhere that most thymoma patients die from breathing problems. I think
that
this must be multiple tumors that take up all empty space in the chest.
I am not working now and feel much less stress.
Hopefully less stress will mean slower growing and less tumors.
Dear Sue
I got a email from a friend of Franks who let me know today that Frank had passed
away He had put this friend in touch with him because this riend had also lost
his 16 year old in a car accident e sent me Franks address Franks wife's; name
is Jackie Koegler Rd1 Box 91-A, Centre Hall PA 16828 Frank had been such a help
to me these past two years and I thank you for two and your website that enabled
some of these friendships I have enjoyed Thank you Nancy
