J,
Why don't you start and tell us about you! What you get out of this group
and why it is so important to you. I know many of us would like to know. I
don't remember last time you sharing any personal information with us.
Alex

Ever get the feeling they may be avoiding your rants?
                                           Marty from Oz

J,
Maybe we could start a new thread, and start fresh.
Hugs,
Jill

I would be honored to break the ice.

I was diagnosed with Bilateral Renal Cell Carcinoma in the spring of 2000.
I was treated at MD Anderson Cancer Center in Houston, Texas. Because of
early detection the cancer was treatable by surgically removing the tumors
and a margin. My Urologist is a specialist in organ sparing, very fortunate
for me.

I must say that Partial Nephrectomy is a very painful surgery. it did not
help they were done about seven weeks apart. Barely had time to get past
the pain from the initial surgery, it lasted 5-6 weeks. In all truth, the
hardest thing I have done in my life was to return for the second surgery.
It went better than the first surgery, the pain lasted only 2-3 weeks.

I have been having routine follow-up exams, which includes blood work, and
CT scans of the chest and abdomen. The cancer has not reappeared. However,
I am changed forever from the experience.

During and after the ordeal it became obvious that as a cancer patient I
should learn more about the disease. I have been reading all information I
can find on the topic. I also felt a need to hear the stories of other
cancer patients. That brought me to alt.support.cancer.

The people at alt.support.cancer are great! They have proven over time how
generous and caring they are. They have been a great source of comfort.

There is a down side to Usenet. A few (alt med) rotten apples are trying to
spoil the cancer support barrel. At first I was offended, then I became
angry, and now I am outraged at all of alt med. As you read this newsgroup
please be aware of the loonies that would discourage you from using
conventional medicine, fraudulently take your money, and give you false
hope. The loonies also criticise and belittle the good advice.

Because of the alt med loonies it may appear that Usenet newsgroups are the
lowest point in the planet.

I assure you that there are many good people on this newsgroup.

Now, please tell us something about you.

Jerry

Lets see.

Rob applied for Social Security Disability payments back in September,
we still haven't heard if he will receive them.  We're cautiously
hopeful, the other day the woman in charge of the medical portion of his
case called and asked Rob to speak to me.  She had a question about the
date of his diagnoses and didn't want to ask Rob because she "knew" that
Rob is having severe memory problems.

On December 16th Rob was home alone, when he felt really ill.  He called
EMS and was taken to the hospital.  They though he had carbon monoxide
poisoning at first, but after the ER doctor realized that Rob has brain
cancer, more testing was done.  (Not only that but the co levels in his
system were in the normal range) The short version is that some of the
calcium crystals that formed in his brain after the surgery and
treatments shifted and drifted to the part of his brain in charge of
vertigo and balance.  Rob was put on a combination of Valium and an anti
nausea medicine and given exercises to encourage the crystals to shift
into a more comfortable pattern.  This seems to have worked, over all,
so he is more comfortable now.

Rob still spends a lot of time in bed, but then he seems to need that
time and I've learned to let him do pretty much what he feels he needs.
  I really need to get the master bath converted to a handicapped
shower system, but the money just isn't there right now.  I haven't
started researching shower systems, yet, but will be planning on that
this year.  Rob's balance is such that taking a shower is scary for him,
so this has currently become a high priority item.

Pam S.

I was diagnosed with Colorectal cancer in November 2003, after 6 months of
asking doctors why I had been constipated.   I finally had to be very firm
and ask for a colonoscopy.  During the colonoscopy the cancer was discovered.

After the initial discovery and subsequent CT/PET scans it was discovered
that there were mets in my liver and left lung.   I immediately went on
chemo/radiation to shrink the tumor to try to save the rectum and anus.   My
first surgery was Feb. 2004 when a permanent colonostomy was performed and
the parts of my liver that had the biggest lesions that the surgeons could
feel were removed.   There was no lymph node involvement and the margins were
clear.

Six weeks after the initial surgery I started chemo using 5FU, Avastin, and
Oxaliplaten (sorry about any spelling errors).   I was initially slated for 8
week on/week off treatments that extended to 10 then 12, and finally were
pushed back to 10 because of side effects.   I tolerated the chemo well with
mostly minor side effects (memory problems, peripheral neurapathy, balance
issues) that got worse as the treatments progressed, but were still minor.  
During the course of treatment the lesions responded well to the chemo and
the lesion on the lung disappeared, but there were some questions about two
lesions in the liver that were not active on the PET scan, but still visible
on the CT scan.   To make sure We got everything I consulted with a liver
specialist at Sloan-Kettering about further surgery and we decided to go
ahead and continue to be very aggressive and take the two areas of the liver
out.

On Dec. 2 of 2004 I had my second surgery and the two areas that had the
lesions in them were removed.   Coarse and fine pathology showed that the
cancer had been killed by chemo.   My blood tests still show below normal
background activity.

I only smoked for a year while in the service Marine Corps, and only drank
heavily during that time and in college, some 25 years ago.   I was
overweight and went from 260 to 180 in six weeks during initial
radiation/chemo.   I've been holding at about 220 since mid year.

All in all, I've had great doctors and support folks.   My family has been
behind me, but since I was initially classified as Stage 4, and my
step-father is a physician, they have been bracing for the worst.   My wife
still has issues with my colonostomy, and is still waiting for the other shoe
to drop.   I try to be as positive and optimistic as possible, since being
anything else is a waste of time.   One of my favorite quotes is from John
Wayne, "Figure out if you want to live or die, then get on with it."   I
think I've been cured.

I go in for re-staging sometime soon and will be returning to work in the
next couple of weeks.

George

Gordo here for Betty. Tomorrow Betty goes for blood test for her final
chemo session ( the fourth ) for small cell lung cancer.
We had intended to stay home for Christmas to keep away from colds etc
when suddenly friends Charley and Mandy ( Charley is a prostate cancer
survivor ) told us to get over to their place for supper. New Years
was to be the same alone  when Charley and Mandy showed up and brought
supper.A wonderful way to end the year and a great way to begin a new
year.
 Gordo

Karen here - I'm still lurking and marveling at the warriors who share
the good and bad times with each other here.  My husband, Tim, was
diagnosed with a brain tumor 12/2000 which was discovered to be mets of
SCLC.  Surgery, whole brain and chest radiation (standing ovations for
the radiation oncs!!) and chemo all did their work and my husband just
had another appointment with the Dr. who gave the "Well, I guess we will
take a scan and make an  appointment for a year from now."  He's doing
well and this Christmas was the first that we have had with those three
grandchildren that were born after his diagnosis (grand total of 6 now).

Special thanks to J, Jerry, Steph, Mike and all that work so hard to
keep this a place where one can gather truthful information,
compassionate understanding and gentle guidance in dealing with all of
the "what does this mean?" that dealing with cancer can dump in a
person's life.

Karen

hi, anna here.

i don't have cancer, however my father did.  he had stomach cancer and was
admitted to hospital just over a month ago for surgery.

although the scans showed that the cancer hadn't spread, when they did the
surgery they found that it had and what was left after they removed his
stomach, was inoperable.

they gave him 3 - 12 mths, but he developed an infection in his lungs, from
the surgery and died 4 days later.  he died surrounded by family and in no
pain.

today i have to go back to the same hospital my father died in, to take my
stepmother to get the results of a biopsy she had on a lump in her right
breast.  turns out she was having the tests only 1 wk after my dad had
passed.

got to say, it's thrown me for a loop, but, fingers crossed, when we get the
results, it'll be better news than we've had recently.  i do hope so, as my
stepmother (not understanding english properly) blames the doctors for what
happened to my father.  due to the infection in his lungs, he developed
depleted oxygen levels and had severe paranoid delusions that the doctors
were trying to kill him.  my stepmother believes that my father was telling
the truth and i'm worried that if the lump does turn out to be cancer,
getting her to agree to the relevant treatment is going to be a struggle!

well that's me and my story so far.

hugs to everyone going through this horrible disease.

anna

Still hanging in.  Making tenative plans to once again head to Port St
Lucie for Mets spring training in March. We might or might not include a
cruise, depending on figgertoes' job situation.  I saw what was probably my
last Denver Broncos home game last Sunday.  I've also started writing to
start bringing money in, as well as doing things like serving as an expert
witness in computer related litigation, helping secure mail servers from
spammers, and ramping up my Computer Recycling program.

I have Stage IV NSC Lung Cancer first diagnosed in May 2001 with a 6 month
death sentence handed to me.  I'm still going to die in six months, but so
far I've been too busy to work it into my schedule.  I'm like the dying
hero in a Wagner opera - fatally stabbed but I can't kick until I finish
the aria first.

The local (Colorado) chapter of the American Lung Assoc is planning a video
interview with me to support their efforts to get local anti smoking
ordinances strengthened.  I ran the initiative to get one passed in my
community 17 years ago, and wouldn't mind helping again. In fact, we have
something planned along those lines in the next month or so.

Zometa was switched from a monthly cycle to a three month cycle (is there a
medical benefit there like my onc says, or are they just giving up?). There
was talk of putting me on Iressa, but that was dropped.  Pain is up
slightly. Onc wanted to switch me to patches instead of morphine, but the
insurance doesn't cover it.

Hi Everyone , Peter From North Wales UK
NSCLung Cancer Still reading emails on a daily basis and my thoughts are
with you all this New Year .

God Bless you J     Peter .

Joe still here. I'm on my 24th chemo treatment. Avastin has been added
to the mix.. Scan a month ago showed continued shrinkage of my liver
tumors. Treatment though will be indefinite. Meanwhile the sheer
amount of toxins infused in me is catching up I guess. I spend every
other Monday at the onc ward and then take a pump pack home with me
for two more days. The 2 or 3 days following that, I look like an
extra in a George Romero movie. Pills work some.

However, by the time the following week comes around, my body (very)
quickly recovers and I am able to do just about anything. I call them
my good weeks. My last good week I felt well enough to carry a full
backpack on a 3-day climb in the Adirondacks. Woohoo! And I'm
maintaining my weight.

My hair is very thin, my fingernails are shot, my neuropathy is bad in
my feet, but hey! I'm alive and in love with my wife all over again
and the sky is bluer, the flowers more aromatic, and the rain more
refreshing than at any other time in my life.

--Joe

"It was only when I lay there on rotting prison straw that I sensed
within myself the first stirrings of good. Gradually, it was disclosed
to me that the line separating good and evil passes, not through
states, nor between classes, nor between political parties either, but
right through every human heart, and through all human hearts. So,
bless you, prison, for having been in my life."
--Alexander Solzhenitsyn, "The Gulag Archipelago"

_________________________________

"Take a little 5FU, leucovorin and oxaliplatin for thy stomach's sake." -- 1 Timothy 5:23 (adapted)

5th January 2005 The ongoing saga
RE: Lung Cancer

The biopsy on the lump removed from my neck proved to be positively
cancerous.
The oncologist did not have the full results at my December meeting but
thought that further radiotherapy may yet be possible. However that has now
been
abandoned bearing in mind the intense course I had before and the
possibility of spinal nerve damage.

Chemotherapy is now scheduled for the 24 January with a booster 0n the 21st.
I the blood tests are ok after that the next session will be on the 4th
February and the 11th.

The handwriting on the treatment note is atrocious but it looks like
"CISPLATIN/VINORELBINE"  - ?

I'll keep you posted as time goes by

Blessings to everyone

JasB

<snip>

Hi J, Group,

It has been a while.  Things have been going farely well for me - at
least to the extent that I've been up and around most of the time and
able to enjoy the time that I have with my family and friends.

Treatment with Avastin/5FU/leucovorin has been off and on due to other
problems.  Disease has been surprisingly stable based on CTs but I'm
not sure how that's going to hold out.  I've had some pretty severe
pain events recently not to mention a hernia, colostomy revision,
internal abscess, and kidney trouble to deal with.  Oh well, after 5
yrs diagnosis, I suppose I can't complain too much <g>.

I hope you all are doing well - best of luck to you.

Regards,
Holden

Hi Elsie here.

I was diagnosed with colorectal cancer stage III in May of 2003 (has it
been that long???).  Pre-operative chemo and radiation followed.  The
tumor was removed in September.  More chemo followed.

I'm doing great.  Recent CT scans have showed a small lesion on the
liver, but it has remained unchanged over 6 months now and is probably
not cancer.  Recent colonoscopies also came back normal.  My doctor
doesn't want to see me for another year and thinks that we only need to
be doing colonoscopies every 2 years now.  I'm still holding my breath
a bit, but I have hope for the future.

On a personal level, I have made a the decision that this is the year
that I am going to get back in shape.  I have been eating more healthy
for about 6 months since August and I started training for a Triathlon
with the Leumemia and Lymphoma society's team in training last week.
So far it's a blast :-)  

Elsie