Tony wrote: << I doubt you'll get much more spam from that newsgroup. >>

Thanks for sharing that---do feel alot better about it, if that is the case.

Helen's back over there.
Maybe she can help make sense out of Kaye's situation.
She seems to have medical training and access to PubMed and the patience and time.
But Kaye would have to post over there. and try to summarize the original diagnosis,
then list the tests and the tests results. And her treatment protocol...and her
concerns.all in one post.

I've made it clickable (above), if that's what Kaye wants to do.
Just avoid reading or interacting with the afore-mentioned "deer"

J

Tim wrote << Kaye, your email address was not crossposted, only your 'handle',
so there
is no possibility of this resulting in additional spam >>

Thanks so much for telling me--feel much, much better about it and do realize
that J meant to help--and realize that I may get additional feedback here which
may be helpful.

Marvin wrote: << you can get a good look at a met with a CT scan - can see the
lump in the
marrow and tell how big it is - that or magnetic resonance is what my onc
uses. >>

Thanks, I have had those, but think what is going on is somewhat of lack of
communication amongst the different dr's--in part--along with lack of follow
through.  One repeated theme I've noted that has occurred both through our
non-profit HMO and at least on a few occasions privately is that there is an
error in the original information--i.e. in the clinical history that goes to
radiologist who then reads results of scans (performed by technicians).  One
example was the latest bone scan.  The clinical history stated that I had pain
in my shoulder and also hip pain.  Well, I did have pain in my shoulder--but
one specific should, not both, and I also have alot of pain in my upper arm on
that side.  Occasionally that pain extends to the armpit, shoulder blade, or
along to me neck. The referral did not mention that the pain was on one
specific side.  Then, the referral did not mention the low back pain (in
addition to the sciatic pain) which corresponds to the L4/L5 area.  The report
came back not making any mention of shoulder findings, despite the fact that
the technician had pointed out on her own initiative that these (what was going
on in both the shoulder and L4/L5 region) were "unusual hot spots"  Findings
are often correlated with reported symptoms.  That couldn't be done in the case
of the L4/L5 since radiologist did not have that information.  That happened on
the first PET scan done 15 mos. ago.  That showed the same L4/L5 area as
increased uptake and said that it should be correlated with an MRI if there
were symptoms.   Huh???  I had reported symptoms for over a year at that time.
However, the oncologist had made the referral for the PET without mentioning
such.  I eventually did get an MRI of that area--8 months later--but for new
symptoms.  The same area, however, was still in question.  The report stated
that it was either a cyst or a mass.
Now, it may be possible that the findings are inconclusive, but if they don't
have all the correct info. at the time the test is done and don't do what they
can to get it, than that further reinforces the possibility of getting an
inconclusive report.
That is the 'game' of managed care, I suppose.

Kaye (me) wrote << At our HMO the patient never sees the radiologist.   >>

I once naively asked to speak to the radiologist and was told that they didn't
speak to patients.  Apparently, for the most part, they don't speak to the dr's
either.
I naively asked after we (my husband and I) spoke to the pathologists.  We did
that because we had both gone in to return pathology slides and there were 2
pathologists there and when we asked receptionist if that was possible, they
both came over.  We were asking about my Her2+ status since it had been
recommended that be retested with FSH.  They told us they were 100% sure that
mine did not needed retesting and that they did that if there were any doubt.
My pathology was so unusual, that they 'all' remembered my case.  (Gosh, how
did I get so lucky--NOT)!   My surgeon, a breast specialist, said that in the 1
year that they had been testing for Her2+ I was only her 2nd case that had
tested positive at a +3 level.  We were quite sure that our HMO was not going
to allow me to have Herceptin, out-of-protocol, if they had any doubts about my
Her2+ status, not at a cost of sixty-six thousand/year.

J wrote: << My question would be how can a person ever expect to get a clear
(imaging of any
type) picture, if they are already treating something they don't know they have
(or
not).

Good question.  I was given osteoporosis-prevention dosage of Zometa for
osteopenia with which I was dx'd and is being recommended although not yet
adopted as standard treatment.

<< They can't see
inflammation if a person is taking an anti-inflammatory. >>

But that's just it--the image is still showing increased uptake or some type of
activity.  It seems to me that since I am already on the Celebrex that that
would rule out the activity being due to an inflammatory process.

J wrote: << BTW didn't you have a "liver" blip on your bloodwork?
Would that coincide with any increase of Celebrex?

J wrote: << BTW didn't you have a "liver" blip on your bloodwork?
Would that coincide with any increase of Celebrex?

I had a single 1.5 lesion on my liver according to the first CT scan.  That
then increased to a 1.8 cm lesion on the next scan--an ultrasound--done one
year later during an attack of acute pancreatitis.  (By the way an ultrasound
done 4 years before my b.c. dx. stated that there was "no visible lesion on the
liver)."   That first ultrasound was ordered because of unexplained swelling in
my lower legs, for which no cause has yet to be found.
Another ultrasound was done 13 days later after 2nd unexplained attack of acute
pancreatitis which showed the lesion to then be 2.0 cm.  A 3rd CT was done 2
mos. later after blood levels went whacky.  That report stated that there was a
2.0 cm lesion on the liver which was stable.  It was only stable between the
2nd and 3rd CT scans, not between the first and third.
I was NOT on Celebrex when this was noted.  They did do a tagged red blood cell
study to rule out an hemangioma.  The report stated that there wasn't enough
resolution to do that in lesions less than 2 cm.  My oncologist wrote in my
records that an MRI was done.  It was NEVER done.  I did have chemo after that
first scan.  I learned that liver lesions malignant) can resemble an hemangioma
after chemotherapy.  Thus, what was going on in my liver from the start was
NEVER identified and nothing definitively ruled out.  A few mos. after I
started the Celebrex a second lesion was reported to be on my liver that was
"stable."  It was first noted 5 weeks after I started the Celebrex and was on a
low dose.  The Celebrex may cause difficulty but it would not show up as a
lesion, I was told.  A subsequent analysis stated that it could have been a
fold in my gall bladder.  
Interestingly, Tony, another poster here whose wife was identified with the
same type of cancer as I (although with less positive nodes) was reported to
have had clear scans initially.  However, she then had an MRI which showed 2
liver lesions.  (They use same non-profit HMO for health care as we but in
different area of state).
Now, right after my dx and before my surgery, I immediately stopped eating
sugar and began a light exercise program.  The weight I had not been able to
lose with other diets came off at an unusual rate--17.5 lbs in 23 days. I  was
overwt. but not obese.  I also started doing some weird rectal bleeding the day
before my surgery (bilateral mastectomy).  My first scan showed enlarged
retroperitoneal nodes--reported not likely associated with breast cancer.  They
aren't for most breast cancer--invasive ductal which 85% have.  However, that
is 3rd most common site for metastases for 'main' type I had which was lobular.
Lobular usually has a better prognosis; however, I had a rare aggressive
variant of that -- pleomorphic invasive lobular -- which supposedly has short
relapse-free survival interval.  By the way, I continued to have bright red
bleeding from rectum --would pour out in small amounts into toilet bowl --
intermittently until after completion of first set of chemo.  It was not
associated with b.m.'s and there was no pain. It was unusual, though.  (BTW, 3
mos. before my b.c. dx (and 6 mos. after I first pointed out mass in chest that
was not further evaluated) I noted a weird change in shape of b.m.'s.  At time
of my dx, my oncologist evaluated tumor markers.  Mine were elevated and that
led me to wonder why that wasn't used for screening of b.c.  I recently learned
that those are not elevated if b.c. is in early stages.  Elevated tumor markers
imply significant possibility of metastatic disease.  My CEA was 12.8 (at time
normal was <3.0 (rating scale has since been revised that normal is <5.0).
Also my CA 27-29 was 58.9, I believe or something like that.  Normal was <37).
Anyway, getting back to liver, that weight loss was unusual and the weight
continued to come off quickly until about my second chemo (AC) when it began to
stabilize.  That is a bit suspicious.  As I said nothing was identfied but the
correlation between all the above does suggest the possibility of something
going on that was NOT ruled out.
All I want is enough and the right kind of treatment for this to be put into
long-term remission so that I can survive, which I believe can be done -- at
least for now-- with the right type of treatment for 'me.'

J wrote << In controlled clinical trials of CELEBREX,
the incidence of borderline elevations of liver tests was 6% for CELEBREX and
5%
for placebo, >>

That does not appear to me to be statistically relevant.

<< A patient with symptoms and/or signs suggesting liver dysfunction, or in
whom an
abnormal liver test has occurred, should be monitored carefully for evidence of
the
development of a more severe hepatic reaction while on therapy with CELEBREX.

I suppose the fact that my alkaline phosphatase did significantly increase
during the first months I was on Celebrex, although at the lowest dosage which
I only took for a month, I should be concerned.  However, that jump also
occurred about 30 days after I stopped a year of Herceptin.  Irregardless, I
added Doxycycline to my regime, doubled the Celebrex, and had my first
infusion, and the alkaline phosphatase level (the only one that had elevated
but was at the upper limits of normal) stabilized and has steadily decline to
what it was at time of dx.  Last reading was 58.  (At time of dx, it was 62.
After mastectomy it was 57, then it steadily increased, albeit slowly until it
reached high pt. of 116.  It had been in 90's for previous 6 mos. before it did
that.  I had not been on Celebrex then.  However, it jumped from  70's to 90's
after first unexplained attack of acute pancreatitis.
All I can say now--with combo of meds I am on is that it first stabilized after
one month and has steadily come down.   Blood levels are taken approximately
every 6 to 8 weeks.