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Medical Forum / Diseases and Disorders / Breast Cancer / July 2005

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Deborah's test results...

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allan grossman - 06 Jul 2005 23:50 GMT
Well, we're back in the fight.  CEA and CA15-3 are slightly elevated
from last month and Dr. Smiley gave us a choice between Navelbine and
Taxotere in addition to the Herceptin, Arimidex and Zoladex she's
doing now.

We opted for the Navelbine because it's worked before and (for us) is
the easier of the two treatments - if it'll keep the nasties under
control there's no sense in bringing in the big guns yet.

I'm concerned about a couple of things - first, her markers are rising
on straight Herceptin so I don't know how well this is gonna work but
it's worth a shot - both Navelbine and Taxotere have proven to be
synergistic with Herceptin and this just might work - and second, they
can't find any mets.  Liver enzymes are normal, bone scan is clear,
chest x-ray is also clear, CEA and CA 15-3 are still rising and since
she's been doing Herceptin for several years I'm way too scared to ask
for a skull CT.

Anyway, like I said we're back in the fight.  Her markers are still
low but they've always been low.  Here's to hoping this thing works -
she's still healthy as a horse but we could use a few positive
thoughts as we go into Round 3 with the beast.

hugs to all -

Signature

allan

we don't see things as they are, we see them as we are.
-- Anais Nin

alex - 07 Jul 2005 00:09 GMT
Allan,
I have never met Dr Smiley but from what I have read he is always on target.
The good thing is their are second generation HER/2 drugs in clinical
trials, hopefully when herception is not doing the trick Deborah can switch
to these.  How is Deborah feeling?  Hopefully this is just prevenentive
therapy.

Alex
allan grossman - 07 Jul 2005 00:28 GMT
>Allan,
>I have never met Dr Smiley but from what I have read he is always on target.
>The good thing is their are second generation HER/2 drugs in clinical
>trials, hopefully when herception is not doing the trick Deborah can switch
>to these.  How is Deborah feeling?  Hopefully this is just prevenentive
>therapy.

She's feeling good, alex  ;-)

Emotionally we're still adjusting, and you're right - there are a pile
of second-generation Her2 drugs in the pipe.  We'll settle in and do
what's in front of us to do again  ;-)

hugs -

Signature

allan

we don't see things as they are, we see them as we are.
-- Anais Nin

marilyn@utrillo.ac - 07 Jul 2005 01:35 GMT
>Well, we're back in the fight.  CEA and CA15-3 are slightly elevated
>from last month and Dr. Smiley gave us a choice between Navelbine and
>Taxotere in addition to the Herceptin, Arimidex and Zoladex she's
>doing now.

Hugs and prayers for you both.

Marilyn
Mary Fisher - 07 Jul 2005 10:06 GMT
> Well, we're back in the fight.  CEA and CA15-3 are slightly elevated
> from last month and Dr. Smiley gave us a choice between Navelbine and
> Taxotere in addition to the Herceptin, Arimidex and Zoladex she's
> doing now.

<snip stuff way above my head>

> since
> she's been doing Herceptin for several years I'm way too scared to ask
> for a skull CT.

What about Deborah?

> Anyway, like I said we're back in the fight.  Her markers are still
> low but they've always been low.  Here's to hoping this thing works -
> she's still healthy as a horse but we could use a few positive
> thoughts as we go into Round 3 with the beast.

Well, my thoughts for you both are as positive as they could be, I wish I
could do more. You have a wonderful resource in Dr Smiley.

Love, and hugs to both of you,

Mary
allan_grossman@hotmail.com - 07 Jul 2005 13:08 GMT
> What about Deborah?

She doesn't know about this particular concern and I'm not telling her
;-)

I don't have anything to base this particular concern on except that I
read too damn much sometimes, Mary.  Even if she did have nasties
growing in her head there's no real advantage to looking for them
unless she becomes symptomatic.  I'll calm down in a few days, honest
;-)

> Well, my thoughts for you both are as positive as they could be, I wish I
> could do more. You have a wonderful resource in Dr Smiley.
>
> Love, and hugs to both of you,

He is a pretty good guy.  Thanks, Mary - I'm looking for a Lapatinib
trial in our area now just in case.  It appears to be the most
promising new drug out there for Herceptin flunkies  ;-)
Mary Fisher - 07 Jul 2005 14:17 GMT
>> What about Deborah?
>
> She doesn't know about this particular concern and I'm not telling her
> ;-)

Oh - now I'm wondering if Spouse has/had any unexpressed concerns ...

> I don't have anything to base this particular concern on except that I
> read too damn much sometimes, Mary.  Even if she did have nasties
> growing in her head there's no real advantage to looking for them
> unless she becomes symptomatic.

No, I suppose not.

> I'll calm down in a few days, honest
> ;-)

I hope so, worry is destructive.

> I'm looking for a Lapatinib
> trial in our area now just in case.  It appears to be the most
> promising new drug out there for Herceptin flunkies  ;-)

You DO read a lot, don't you!

Smiles and more hugs,

Mary
allan_grossman@hotmail.com - 07 Jul 2005 15:18 GMT
> Oh - now I'm wondering if Spouse has/had any unexpressed concerns ...

Maybe he did, Mary.  I think sometimes spouses tend to try to protect
each other - and sometimes that means keeping some stuff to yourself;
especially if the fear isn't grounded in hard evidence.  As we've
established, I read too much  ;-)

> Smiles and more hugs,

Thanks - and hugs back  ;-)
Mary Fisher - 07 Jul 2005 15:35 GMT
>> Oh - now I'm wondering if Spouse has/had any unexpressed concerns ...
>
> Maybe he did, Mary.  I think sometimes spouses tend to try to protect
> each other - and sometimes that means keeping some stuff to yourself;
> especially if the fear isn't grounded in hard evidence.

After spending some time thinking about this, I honestly believe he didn't
keep any worries to himself about the bc. He did about the meningioma but
that was because my character had changed, as soon as I was back to normal
he didn't worry any longer.

> As we've
> established, I read too much  ;-)

The image of you reading and scratching at the same time is too strong to
resist :-)

Mary
allan_grossman@hotmail.com - 07 Jul 2005 15:44 GMT
> The image of you reading and scratching at the same time is too strong to
> resist :-)

Maybe sometime you could see me walk and chew gum at the same time.
That's really impressive  ;-)
Mary Fisher - 07 Jul 2005 15:49 GMT
>> The image of you reading and scratching at the same time is too strong to
>> resist :-)
>
> Maybe sometime you could see me walk and chew gum at the same time.
> That's really impressive  ;-)

A bit too athletic ... you need to take care, don't want you wearing
yourself out, there'll be less to scratch ...

Mary
Eva - 08 Jul 2005 01:26 GMT
> .... I'm looking for a Lapatinib
> trial in our area now just in case.  It appears to be the most
> promising new drug out there for Herceptin flunkies  ;-)
-----------
How long has Deborah been taking the Herceptin?

Eva
allan_grossman@hotmail.com - 08 Jul 2005 11:56 GMT
> How long has Deborah been taking the Herceptin?

Pretty close to five years with a couple year break in the middle, Eva.
It looks like maybe the Herceptin has killed about everything it can -
her tumor markers have been in the normal range for a heck of a long
time.

She had good response with Navelbine added to Herceptin and maybe we
will again  ;-)
mariestrack@yahoo.com - 07 Jul 2005 12:30 GMT
Allan,

Best wishes in the treatment ahead for both you and your wife.  I'll
keep you both in my prayers.

Marie
lisa - 11 Jul 2005 19:43 GMT
allan,

I just stop in now and then to see how folks are doing.  This is crappy
news.  I'll be sending many positive vibes in your direction (North,
right?) and pray that Dr. Smiley can take as good care of Deborah as he
has in the past.

Take care.
...lisa (glad I missed this Heather business)
allan_grossman@hotmail.com - 12 Jul 2005 14:36 GMT
> allan,
>
[quoted text clipped - 5 lines]
> Take care.
> ...lisa (glad I missed this Heather business)

Thanks, lisa - it's really good to hear from you  ;-)

We'll do fine - the numbers are still low and there are still a few
options available.

hugs - and don't be such a stranger  ;-)
Pat from Apple Valley, CA - 12 Jul 2005 01:08 GMT
> Well, we're back in the fight.  CEA and CA15-3 are slightly elevated
> from last month and Dr. Smiley gave us a choice between Navelbine and
[quoted text clipped - 20 lines]
>
> hugs to all -

Allan,
    I have been on a road trip for the past 2 weeks and didn't get to
monitor the NG.
Sorry to hear about Deborah's test results. What is the difference
between the  CA15-3 and CEA? I get a CA27/29, is that the same as the
CEA? MY marker numbers have been really high for the last year but have
been going down some, from 2400 to the high 700's. I have mets to my
bones and have liver spots, also. I have been taking chemo since Aug. of
last year. Is Deborah Er Positive? I am only slightly positive, so don't
know if Herceptin would be for me as Tamoxifen and Arimedix didn't do
anything for me. I have been following Deborah's progress and sure would
like to be doing as well as as she has. I hope that her Dr. finds
something that will stop the rise in her markers..
    Good Luck!!!...Pat from Apple Valley, CA
allan_grossman@hotmail.com - 12 Jul 2005 14:43 GMT
> Allan,
>     I have been on a road trip for the past 2 weeks and didn't get to
[quoted text clipped - 9 lines]
> like to be doing as well as as she has. I hope that her Dr. finds
> something that will stop the rise in her markers..

Hi, Pat -

Her markers are nowhere near 700 but her markers tend to run low anyway
;-)

CA27.29 and CA15-3 are different tests - although they numbers run on a
roughly equivalent scale they can't be used interchangeably.  CEA is a
completely different marker and runs on a different scale.  There's a
great (though really technical) article on the difference between
CA27.29 and CA15-3 at

http://www.clinchem.org/cgi/content/full/45/5/630

Deborah's been doing Herceptin off and on for the last several years
and it's kept her alive this long - it appears that Herceptin +
Arimidex is no longer effective (or at least no longer *as* effective)
so we added Navelbine to the mix to see if that'd knock things back a
little.

We've been coasting when we can and working when we have to - it just
looks like it's time to go back to work now  ;-)

hugs -

allan
Pat from Apple Valley, CA - 13 Jul 2005 05:30 GMT
>>Allan,
>>    I have been on a road trip for the past 2 weeks and didn't get to
[quoted text clipped - 35 lines]
>
> allan

Thanks Allan, I will check it out.
(http://www.clinchem.org/cgi/content/full/45/5/630)
My last Onc. let my markers get so high by not authorizing the marker
test. He said they ment nothing. I got rid of him as soon as I could
change insurances, by then it was at 2400... I'm taking oral chemo now
and the numbers are getting lower, but not real fast. I do feel pretty
good, hence the road trip, but the mets to my ribs are pretty
painful..Thank G_D for Vicodan 10...God luck to Deborah. too!!!...Pat
allan_grossman@hotmail.com - 13 Jul 2005 12:47 GMT
> Thanks Allan, I will check it out.
> (http://www.clinchem.org/cgi/content/full/45/5/630)
[quoted text clipped - 4 lines]
> good, hence the road trip, but the mets to my ribs are pretty
> painful..Thank G_D for Vicodan 10...God luck to Deborah. too!!!...Pat

Thanks -

I think some oncologists feel the same was the one you fired did - I'd
prefer to have a little more information, I think.

If your markers are going down that's a good thing - the drugs are
working  ;-)

I know rib mets are kinda difficult to treat, Pat - stay on your doc to
keep the pain under control.  There's still lotsa stuff they can do for
you  ;-)
Barb - 17 Jul 2005 00:21 GMT
Hello Allan,
Just back from vacation and still catching up.....I hated seeing that
Deborah is "going another round" and hope that Dr. Smiley comes up with the
right combination of drugs to bring markers down.  Does it take long before
you know how the drugs are working?  Sure would be nice to see something
encouraging in a reasonable amount of time.....Does Deborah continue to feel
well during treatment with these drugs?  Please let her know that I am
thinking of both of you and sending my best wishes.
Barb
allan grossman - 17 Jul 2005 11:47 GMT
>Hello Allan,
>Just back from vacation and still catching up.....I hated seeing that
[quoted text clipped - 4 lines]
>well during treatment with these drugs?  Please let her know that I am
>thinking of both of you and sending my best wishes.

Hi, Barb -

I think Deborah's getting her markers tested weekly now - these days
she's getting weekly Herceptin and Navelbine two out of every three
weeks and we figure we should know something in a couple more cycles.
Sometimes tumor activity tends to spike a little when you first start
chemo so we've gotta wait for that to settle down before we know
anything for sure.

She feels pretty darned good - she's always tolerated Navelbine well
and feels a bit off the day of and the day after treatment, but it
doesn't slow her down even a little bit.

Thanks for the kind words  ;-)

Signature

allan

we don't see things as they are, we see them as we are.
-- Anais Nin

 
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