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Medical Forum / Diseases and Disorders / Cancer / December 2003

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Stage IV Non-small-cell lung cancer

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Jim Beaver - 02 Nov 2003 00:47 GMT
My wife, a 45-year-old woman, has just been diagnosed with Stage IV
Non-small-cell lung adenoma.  There are metastases in her sternum, lumbar
spine, and hip.

Has anyone, whatever the treatment, ever outlived this diagnosis, or is it
simply a matter of time?  I know what the statistics are, but I don't quite
know what the possibilities are.

Signature

Jim Beaver

Steph - 02 Nov 2003 02:43 GMT
> My wife, a 45-year-old woman, has just been diagnosed with Stage IV
> Non-small-cell lung adenoma.  There are metastases in her sternum, lumbar
[quoted text clipped - 3 lines]
> simply a matter of time?  I know what the statistics are, but I don't quite
> know what the possibilities are.

Unfortunately, the situation is incurable. Quality of life is the important
issue
Socks the Whitehouse Cat - 02 Nov 2003 04:33 GMT
> My wife, a 45-year-old woman, has just been diagnosed with Stage IV
> Non-small-cell lung adenoma.  There are metastases in her sternum,
[quoted text clipped - 3 lines]
> is it simply a matter of time?  I know what the statistics are, but I
> don't quite know what the possibilities are.

I've got the same thing, with the same spread at the time I was diagnosed.  
Stats say that 6% live 5 yrs from diagnosis with NSC lung cancer.  Those 6%
are coming from somewhere.  

I got told when they diagnosed me in May, 2001 that I had 6 months to live.
Obviously, they blew that call.  The first summer after diagnosis I was
still riding my bike, going on hikes, and enjoying life. A couple of weeks
ago I got back from Hawaii.  Quality of life can be maintained for a long
time, especially with the treatments that they have these days.  Get out
there and enjoy life. Whatever she does, don't let her sit around the house
feeling sorry for herself.  Getting out and doing things was an important
part of extending life.

Signature

The major difference about 'targeted marketing' on the Internet is the
targets can and will shoot back. -- Gym "Often with heavier weapons." Quirk

J - 19 Nov 2003 18:38 GMT
> Giving up the right to remain silent, "Jim Beaver"
> <jumblejim@prodigy.spam> said in
[quoted text clipped - 13 lines]
> I got told when they diagnosed me in May, 2001 that I had 6 months to live.
> Obviously, they blew that call.

Prognosticating has it's problems. I don't envy doctors.
J
J - 02 Nov 2003 17:24 GMT
> My wife, a 45-year-old woman, has just been diagnosed with Stage IV
> Non-small-cell lung adenoma.  There are metastases in her sternum, lumbar
[quoted text clipped - 3 lines]
> simply a matter of time?  I know what the statistics are, but I don't quite
> know what the possibilities are.

Hello Jim
Welcome to a newsgroup nobody wants to belong to.
I'm sorry about your wife's cancer.

I'm glad that you've received a reply from Socks.
There may be others (who've outlived their prognosis) on the ACOR mail list
http://www.acor.org/mailing/index.html?l=l

Mom had carcinoma of the right lung with mets. I'm unsure of which type nor
when it started.
She was functional right up (I think) until 6 weeks before she passed (age 70).
She had no treatment (other than pain medications), we're not sure why.

I note that your wife's mets are in bone.
If she's symptomatic (bone pain), I think a lot can be done by a radiation
oncologist to help with that.
Steph would know, he's a rad onc.

So questions, ask away.
We'll be here for you (and your wife) as best we can.
J
Frank Gingrich - 05 Nov 2003 16:08 GMT
Jim,

The first three replies are all good.  I was dx Stage 4 in July and have
been following the ACOR NSCLC mail list since then.  It has been
illuminating and encouraging to se that there are many who beat the
prognosis.  I imagine that tells us mainly that "prognosing" is pretty
hard.  There's lots of experience with all kinds of chemo there and plenty
of support (as there is here), but there it's all focused on NSCLC.

I've been on carboplatin and paclitaxel since August and, so far, side
effects have not been too bad.  My treatment plan is to extend quality life
as much as I can and stop treatment when the quality is gone.  I imagine
the trick will be to recognize that point and not get "sucked in" by just
one more shot.  We'll see, sooner or later.

Good luck to you and your wife.

Frank
67-YOM; 3/99 left upper lobectomy, Stage 1B adenocarcinoma.
7/03, wedge resection right lower, Stage 4 adeno.
Began chemo 8/03.
Tm n Kat - 06 Nov 2003 03:59 GMT
Frank, How can a person go about joining the mailing list?  I would like to
send this information to my brother in law.  Kathy J
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
>Subject: Re: Stage IV Non-small-cell lung cancer
>From: Frank Gingrich gingrich@speakeasy.net
>Date: 11/5/2003

>I was dx Stage 4 in July and have
>been following the ACOR NSCLC mail list since then.  It has been
>illuminating and encouraging to se that there are many who beat the
>prognosis.  
J - 06 Nov 2003 09:54 GMT
> Frank, How can a person go about joining the mailing list?  I would like to
> send this information to my brother in law.  Kathy J

Are my posts not showing up for you? I posted it to this same thread 2 days
ago..
http://www.acor.org/mailing/index.html?l=l
J
Frank Gingrich - 06 Nov 2003 18:11 GMT
> http://www.acor.org/mailing/index.html?l=l

J,

When I tried this link it went nowhere.  I have no idea why.

Thanks.    Frank
J - 06 Nov 2003 18:21 GMT
> > http://www.acor.org/mailing/index.html?l=l
>
> J,
>
> When I tried this link it went nowhere.  I have no idea why.

Me either Frank, works for me in IE and Netscape/Mozillia.
And I did post about ACOR (long post) on Oct 28th..
wish someone else had told me and/or it works for some and not for others.
I'm trying to point them to the right place..to save them having to look
around
For instance NSCLC a person might first go looking in the N's and it's in the
L's..see my thinking?
It bombed!
Guess I'll just have to use ..well does this work
http://www.acor.org/mailing/index.htm  ?
if not, I'll have to use http://www.acor.org/ from now on.
Thanks,
J
Tm n Kat - 07 Nov 2003 00:41 GMT
>Subject: Re: Stage IV Non-small-cell lung cancer
>From: J MinimaList@example.net
>Date: 11/6/2003

>Are my posts not showing up for you? I posted it to this same thread 2 days
>ago..

Sorry, must have missed it.  Thanks, have passed it on.  Kathy J
Frank Gingrich - 06 Nov 2003 18:10 GMT
Kathy,

The NSCLC list site is
http://listserv.acor.org/archives/lung-nsclc.html

The NSCLC "Join or leave" page is
http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=lung-nsclc&A=1

ACOR Home page is
http://www.acor.org/mailing.html

Frank

> Frank, How can a person go about joining the mailing list?  I would
> like to send this information to my brother in law.  Kathy J
[quoted text clipped - 7 lines]
>>illuminating and encouraging to se that there are many who beat the
>>prognosis.  
Tm n Kat - 07 Nov 2003 00:45 GMT
>Subject: Re: Stage IV Non-small-cell lung cancer
>From: Frank Gingrich gingrich@speakeasy.net
>Date: 11/6/2003

>Kathy,
>
[quoted text clipped - 20 lines]
>>>illuminating and encouraging to se that there are many who beat the
>>>prognosis.  

Thanks Frank, will cc this post to him as well.  Kathy J
J - 08 Nov 2003 11:50 GMT
> Frank, How can a person go about joining the mailing list?  I would like to
> send this information to my brother in law.  Kathy J

Hello Kathy,
How are you doing?  I'm so glad you are able to help your brother in law.
He has lung cancer also?
How is he doing?
We'll be here for you also, if you wish.

I had no idea that the way I was posting the ACOR url, was not working for
others.
Hugs and thanks for your patience with me.
J
J - 19 Nov 2003 18:39 GMT
> The first three replies are all good.  I was dx Stage 4 in July and have
> been following the ACOR NSCLC mail list since then.  It has been
[quoted text clipped - 15 lines]
> 7/03, wedge resection right lower, Stage 4 adeno.
> Began chemo 8/03.

How's it going Frank?
I don't know much about side effects of those particular chemos
J
Frank Gingrich - 21 Nov 2003 02:19 GMT
>> I've been on carboplatin and paclitaxel since August and, so far,
>> side effects have not been too bad.  My treatment plan is to extend
>> quality life as much as I can and stop treatment when the quality is
>> gone.  I imagine the trick will be to recognize that point and not
>> get "sucked in" by just one more shot.  We'll see, sooner or later.

> How's it going Frank?
> I don't know much about side effects of those particular chemos
> J

OK so far, J, thanks for asking.  None of my side effects has risen above
the level of nuisance, although the peripheral neuropathy is approaching
"damn nuisance" status. Some days I'm tired, but most days I do OK,
although overall energy is down a bit. I have been lucky not to have
nausea.  Many foods don't taste right (or taste at all), but others are
still near normal -- that's a little disappointing but, hey, a body can
live with it.  Hair is gone, of course -- no big deal.  My appetite has
stayed up and I haven't lost weight.  On each day of treatment the decadron
or benadryl (or both) prechemo really wires me and I need an Ambien to get
to sleep that night.  (This week two nights.)  The neuropathy so far causes
numbness and tingling in my fingers and feet -- mild in my fingers but
moderate and slightly worsening in my feet.  As I said, it's just a
nuisance so far but I am concerned about keeping it from getting worse.  
I'm in the last of four 4-week cycles which are, according to plan, to be
followed by weekly taxol.  My onc and I will be considering that and may
modify or forego it so as not to aggravate the neuropathy.  I gather the
numbness can get bad enough to interfere with walking, and that isn't
consistent with quality of life, IMO.

I had CT and PET scans after 8 weeks, with no real change noted except loss
of the pleural effusion seen in the baseline scans.  I'll have a 16-week CT
scan on Dec. 5 to see if there's been any result, and decide where to go
from there.

Regards and good luck to all.

Frank
J - 22 Nov 2003 10:41 GMT
> OK so far, J, thanks for asking.  None of my side effects has risen above
> the level of nuisance, although the peripheral neuropathy is approaching
[quoted text clipped - 19 lines]
> scan on Dec. 5 to see if there's been any result, and decide where to go
> from there.

Hello Frank,
Thanks for elaborating.
I see some on other newsgroups taking Benadryl for sleep. It has guafes..(don't
know how to spell it) in it.
Benadryl is an expectorant/decongestant? Is that why you are taking it?
It never helped me sleep, I too got wired from it.
Can you not take it in the a.m. instead? Just wondering...

I think I just saw this week some tips about feet and neuropathy on the breast
cancer newsgroup, but danged if I can remember what was said.  IIRC they were
painful, swollen and red.

Would radiation therapy be an option or has that been ruled out?
I'm a little lost after reading your archived posts.  Castleman's disease, some
surgery, the staging was lower..how did we get to Stage IV?  Just wondering if
what they're seeing is the Castleman's and not cancer?

I'll watch for your updates,
If not before, have a wonderful Thanksgiving.
Regards,
J
Frank Gingrich - 23 Nov 2003 01:48 GMT
> Hello Frank,
> Thanks for elaborating.
> I see some on other newsgroups taking Benadryl for sleep. It has
> guafes..(don't know how to spell it) in it.

Guaifenesin?  Some preps may have both in them, but I don't think the
benadryl I get has it. Could be wrong, incredible though that may seem. :)

> Benadryl is an expectorant/decongestant?  Is that why you are taking
> it? It never helped me sleep, I too got wired from it.
> Can you not take it in the a.m. instead? Just wondering...

Guaifenesin is the expectorant/decongestant.  Benadryl is an antihistimine.
Each week, as prechemo, I get decadron (steroid), benadryl, and cimetidine
by IV and a kytril pill.  The first two are to ward off alergic reaction
(to the carbo and/or taxol), the cimetidine reduces stomach acid production
and the kytril is anti-nausea.

> I think I just saw this week some tips about feet and neuropathy on
> the breast cancer newsgroup, but danged if I can remember what was
> said.  IIRC they were painful, swollen and red.

Well, it can get pretty bad for some.  So far mine is irritating and
uncomfortable, but not worse.  In addition to numbness and tingling I have
had some cramping this week.

> Would radiation therapy be an option or has that been ruled out?

What I have is small nodules strewn around both lungs.  Not a good,
discrete target for radio.  It hasn't been recommended so far.

> I'm a little lost after reading your archived posts.  Castleman's
> disease, some surgery, the staging was lower..how did we get to Stage
> IV?  Just wondering if what they're seeing is the Castleman's and not
> cancer?

In 1998-early 99 I had pneumonia twice, then xray, CT, and bronchoscopy,
all inconclusive except that there was a large "thing" in my left upper
lobe.  Went to surgery in Mar 99, thing was adenocarcinoma, stage 1B.  
Followup consisted of chest xray and exam every 90 days for two years, then
every 180 days until five years.  I also had one or two CT scans within
that first year or so. But I do not have the results at hand.

In late 2000/2001 a gastroenterologist casting about trying to explain
severe diarhhea tried a CT scan when he ran out of other ideas.  It showed
a large thing in my abdomen, on the mesentery.  That was laparoscopically
removed in Apr 2001, initially dx as lymphoma, then changed to Castleman's
Disease (CD).  That was all a mere coincidence unrelated to my original
complaint, which arose from pancreatic insufficiency, for which I still
medicate. CD appears in several variants.  Those like myself, who have
"unifocal" CD usually have it removed and live happily ever after.  Those
less fortunate souls with "multicentric" CD typically have continued growth
and spread, chemo treatments and increasing problems, often eventually
resulting in death. Quite a lot for a "benign" disease. Anyway, I don't
suppose one can "prove" that they aren't Castleman's without biopsy, but
they are not behaving in CD-like fashion, and CD usually does not present
this way.

Anyway, I had no CD treatment, only followup, which was CT scan every 90
days for 1 year, then annually thereafter.  These CTs, starting in mid-
2001, reported several "nodular opacities" in both lungs, sub-centimeter in
size and stable -- not growing.  In Apr 2003, my annual CD CT scan reported
at least two of the nodules in my right lung were growing.  In July, 2003,
a thoracoscopic wedge resection removed the larger one, which was dx
metastatic adenocarcinoma. With the cancer now in my right lung I was
declared Stage 4, leading to the current chemo.

I will view the post-chemo CT scan (Dec. 5) with great interest.  If any of
the nodules change, how many and which ones?  We have, after all, only
proved that one was adeno.  Maybe it's safe to assume that the other
"growing" one is also adeno, but how about those which may not have
changed?  OTOH, if most or all shrink a bit, they probably are adeno.  I
have been curious if any/all of the nodular opacities appeared in the CTs
1999-2001, but I don't presently have access.  Also, I would only have the
written reports and, with a different radiologist every time (and different
reason for scan), the written results are often inconsistent from one to
another.

> I'll watch for your updates,
> If not before, have a wonderful Thanksgiving.

Thanks, J, and you.

Frank
Howian - 02 Dec 2003 14:11 GMT
Look into celebrex also, there is a rapidly evolving body of scientific
evidence about the properties of cox-2 inhibitors and the widespread use of
celebrex attests to the fact that there are few side effects.  Celebrex is made
by a large company so the possibility of scams for cancer cures is eliminated.

>Subject: Re: Stage IV Non-small-cell lung cancer
>From: Frank Gingrich gingrich@speakeasy.net
[quoted text clipped - 38 lines]
>
>Frank
J - 02 Dec 2003 17:52 GMT
> Look into celebrex also, there is a rapidly evolving body of scientific
> evidence about the properties of cox-2 inhibitors and the widespread use of
> celebrex attests to the fact that there are few side effects.  Celebrex is made
> by a large company so the possibility of scams for cancer cures is eliminated.

And what does the company claim that it does for cancer, please?
J
 
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