Hello again, I saw my oncologist this past Monday. I finally have the
results of my lumpectomy and the path report. My tumor was 2.6
centimeters, Lymph node negative, estrogen receptor negative,
her-2-neu positive. Apparently there is a new experimental drug out
there that is specific to the protein her-2-neu called herceptin. My
doc has offered the possibilty of my participating in clinical studies
since my breast cancer falls in the 20% occurance rate and has the
appropriate factors. Any ideas? Suggestions? Opinions? It looks as
though this therapy would be weekly for 52 weeks - YAWN! I will be
starting A/C therapy next week and will follow that regimen with Taxol
for an additional 24 weeks. I believe that after A/C+T are completed I
can do radiation in conjunction with the clinical study of herceptin.
This seems like quite a drawn out procedure. I'm feeling much less
optimistic today. I guess ignorance is bliss - until I saw the onc I
was really not feeling this overwhelmed. I really hope I can get
through this. I'm fortunate to have wonderful support from my family
and friends, but the thought of being quite ill for the better part of
a year - that's pretty intimidating to me. I don't mind the hair loss
as a matter of fact I've already bought wigs that are so much like my
own hair that no one will notice. But I have just been having
pre-chemo blood work and heart scans and I have horrible veins, I'm
not looking forward to being stuck 3-5 times each time chemo is
administered - right now the onc is saying every 3 weeks for A/C for
24 weeks and then every 3 weeks for 24 weeks with taxol. Then if I
decide to do the clinical studies it would be every week! YIKES My
faith in God is helping alot but any help you guys have would be
appreciated. Thanks so much Darla
Tim Jackson - 10 Dec 2003 22:44 GMT
> Apparently there is a new experimental drug out
> there that is specific to the protein her-2-neu called herceptin. My
> doc has offered the possibilty of my participating in clinical studies
> since my breast cancer falls in the 20% occurance rate and has the
> appropriate factors. Any ideas? Suggestions? Opinions?
Herceptin has proved very effective for some people. It has been used for
stage IV cancer for the last few years with some significant successes. It
is probably well worth participating in this trial if you can.
> But I have just been having
> pre-chemo blood work and heart scans and I have horrible veins, I'm
> not looking forward to being stuck 3-5 times each time chemo is
> administered - right now the onc is saying every 3 weeks for A/C for
> 24 weeks and then every 3 weeks for 24 weeks with taxol. Then if I
> decide to do the clinical studies it would be every week!
That sounds right for this protocol. How about having a port installed?
Tim
darla - 11 Dec 2003 03:42 GMT
Hi Tim, With regard to the port. How does that work? Would it stay in
for the entire chemo therapy? Where is it located. Does it interfer
with regular living. I guess anything would be preferable to having to
be stuck so many times. We also run the risk of blowing all the veins
- then what? I'll look into the port, I see the onc again tomorrow
12-11. Thanks Darla
> > Apparently there is a new experimental drug out
> > there that is specific to the protein her-2-neu called herceptin. My
[quoted text clipped - 16 lines]
>
> Tim
Kaye301 - 11 Dec 2003 05:12 GMT
Darla wrote: << With regard to the port. How does that work? Would it stay in
for the entire chemo therapy? Where is it located. Does it interfer
with regular living. >>
There are different types. Most seem to have one surgically implanted below
their collar bone on one side. They are kept in throughout chemo and sometimes
afterwards as well. Care requires having them flused routinely, generally by a
nurse. Many are glad that they have them. Some report difficulties, although
I don't think that is the norm. Some have reported healing-related
difficulties after they were implanted and/or removed--again I don't think that
is the norm. I have also seen one that was external on someone's leg.
External ones can also be placed on one's arm.
I did chemo without a port. It wasn't offered, although I learned I could have
had one if I asked. I would have if I had had any difficulty. I didn't have
a problem with the chemo, although my veins on that side are not that great
anymore. I had 8 treatments of hard chemo along with a year of Herceptin. I
now get Zometa every 3 mos. without any difficulty. Nurses seem to have no
problem finding veins for injections. However, the lab techs seem to have
difficulty when taking blood, although usually can find a good vein.
One is still stuck with the port. I have heard that that can be uncomfortable,
although they generally use a numbing cream first. I didn't find the IV
insertions to be painful, for the most part. They usually got it in the first
time, although once in a while it didn't work the first time.
Ports are definately recommended for certain types of chemo and some centers
prefer the patient to have them, particulary if the chemo is not going to be
administered by an R.N. I believe they are the only ones allowed to start IV's
(at least in the states) but am not certain of that.
I am guessing that some surgeons prefer some types over others. I don't know
if there is any difference re type in terms of insurance coverage
Anyway, best of luck and hope all goes smoothly with minimal discomfort.
Tony Lima - 11 Dec 2003 20:58 GMT
>Hi Tim, With regard to the port. How does that work? Would it stay in
>for the entire chemo therapy? Where is it located. Does it interfer
>with regular living. I guess anything would be preferable to having to
>be stuck so many times. We also run the risk of blowing all the veins
>- then what? I'll look into the port, I see the onc again tomorrow
>12-11. Thanks Darla
The port is a semi-permanent implant below your right
collarbone. It's especially useful if you have "bad veins"
for blood draws and chemo infusions. If nurses and techs
have trouble getting a needle in your veins you should
consider a port.
My wife is on her second port. (More about that in a
second.) She absolutely loves them and hopes this one lasts
longer than the first.
The drawback is they can become infected if not treated
properly. Generally don't let anyone inexperienced use your
port for the first six months. Pay close attention to the
procedure so you'll know if someone is about to miss a step.
Be sure the area is brushed with betadine after they take
the needle out. Force someone to explain the procedure to
you and take notes while they're doing it. Be sure you
understand the name of the special needle that must be used
with it. - Tony

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bartalo@webtv.net - 11 Dec 2003 00:19 GMT
I am confused by your post. If you are in the 20% rate how does that
make you a Grade IV? I thought Herceptin was only allowed for Grade IV
bc. I am Herp2+ and also ER+ but I was told I probably could never get
Herceptin and that I was a Grade 2 because I have an 80% cure rate.
(Isn't that the same as your 20% reoccurance rate?) I sure am confused
by how they figure out what "grades" we are.
You also did not seem to have any nodes affected so I am wondering why
you are having so much Chemo etc. I guess your Onc believes in more
aggressive treatment than mine does. Sounds to me like he is going all
out to protect your life but if you are concerned about your treatment,
you can always get a second opinion. Best of luck on whatever you
decide to do.
Bea
Tim Jackson - 11 Dec 2003 09:29 GMT
> I am confused by your post. If you are in the 20% rate how does that
> make you a Grade IV? I thought Herceptin was only allowed for Grade IV
> bc. I am Herp2+ and also ER+ but I was told I probably could never get
> Herceptin and that I was a Grade 2 because I have an 80% cure rate.
> (Isn't that the same as your 20% reoccurance rate?) I sure am confused
> by how they figure out what "grades" we are.
Herceptin is available on clinical trial only in some areas for earlier
stage cancers, as in Darla's case. It only has full approval for general
use for stage IV. It is I think a condition of participating in the trial
that you take the current 'gold standard' chemo.
"Grade" usually refers to the microscopic appearance of the cancer cells.
Low grade means they look pretty much like normal breast cells, which
implies that the amount of DNA mutation is relatively small, and that they
are probably relatively unaggressive. High grade cells are more regressed
or distorted and are less identifiable as to what tissue they originated
from. This means a high level of DNA damage, and more likelihood of
aggressive behaviour.
Tim
darla - 11 Dec 2003 13:03 GMT
Bea, I am Her2+ and ER-. I believe he is using those factors as the
reason for the Herceptin. I don't think you necessarilyl need to be
grade IV. I see him again today I'll ask and let you know. Darla
> I am confused by your post. If you are in the 20% rate how does that
> make you a Grade IV? I thought Herceptin was only allowed for Grade IV
[quoted text clipped - 11 lines]
>
> Bea
Kathleen Langwell - 13 Dec 2003 17:45 GMT
>Bea, I am Her2+ and ER-. I believe he is
> using those factors as the reason for the
> Herceptin. I don't think you necessarilyl
> need to be grade IV. I see him again
> today I'll ask and let you know. Darla
Darla,
I think you are using the term "grade IV" when you mean Stage IV. There
is a big difference. There are Stages I thru IV which is based on your
pathology report, and other tests/scans to see if the cancer has
traveled beyond the breast or lymph nodes.. The Grades are 1 thru 3 and
are also based on pathological findings relating to DNA, how fast the
cells are dividing, and other findings by the pathology lab.
Stage IV is when the cancer has metastasized to other parts of the body
and a cure is no longer possible.
Kathie
darla - 14 Dec 2003 01:41 GMT
Kathie,
You are right I was referring to Stage IV cancer. I'm lymph node
negative, Her2 positive and ER- and the study I'm participating in is
trying see how Herceptin works for folks who are in early stages of
bc. I'm Stage II only because my tumor measured 2.6 cm.
Darla
> >Bea, I am Her2+ and ER-. I believe he is
> > using those factors as the reason for the
[quoted text clipped - 15 lines]
>
> Kathie
Kaye301 - 11 Dec 2003 00:21 GMT
Hi Darla, I highly recommend Herceptin. I did it weekly for a year--it was no
big deal--used the time to catch up on reading, paperwork, etc. I wish I could
have had it longer--but I had alot more things going on. My best thoughts (and
prayers) are with you. Take care and {{{Hugs}}}
Richard Faulkner - 11 Dec 2003 11:24 GMT
Darlah,
My partner, Janet, is on a Herceptin trial for a year but in her case
the herceptin became 3 weekly after 6 months.
Nobody knows whether it will work, but it seems that it has got to be
better than not having it. We actually considered paying for herceptin
if she hadn't got on the trial.
I know it doesnt sound nice, but a port may be the solution to your bad
veins.
Richard
>Hello again, I saw my oncologist this past Monday. I finally have the
>results of my lumpectomy and the path report. My tumor was 2.6
[quoted text clipped - 23 lines]
>faith in God is helping alot but any help you guys have would be
>appreciated. Thanks so much Darla

Signature
Richard Faulkner
darla - 11 Dec 2003 20:38 GMT
I have scheduled the surgery to put in a port for next week. I would
have never thought about this so thanks for the suggestion Tim. My onc
was very happy to oblige. I am going to participate in the Herceptin
clinical study. I may or may not end up being treated with Herceptin
since this is a 3 armed study and the recipients of Herceptin are
chosen at random. Two out of three arms have Herceptin treatment
though so those are pretty good odds. I start A/C chemo on Monday.
Darla
> Darlah,
>
[quoted text clipped - 37 lines]
> >faith in God is helping alot but any help you guys have would be
> >appreciated. Thanks so much Darla
Tony Lima - 11 Dec 2003 22:28 GMT
>I have scheduled the surgery to put in a port for next week. I would
>have never thought about this so thanks for the suggestion Tim. My onc
[quoted text clipped - 4 lines]
>though so those are pretty good odds. I start A/C chemo on Monday.
>Darla
Darla, be sure to let us know how things are going. Best
wishes on the surgery. Incidentally, the docs may have told
you it's an outpatient procedure. My wife would not have
wanted to drive herself home. She also didn't want to move
much for about 24 hours. If you're living alone try to
persuade a friend to move in with you for a day or so. -
Tony

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Richard Faulkner - 12 Dec 2003 01:42 GMT
>I have scheduled the surgery to put in a port for next week. I would
>have never thought about this so thanks for the suggestion Tim. My onc
[quoted text clipped - 4 lines]
>though so those are pretty good odds. I start A/C chemo on Monday.
>Darla
Which trial is it?
Janet is on BCIRG006

Signature
Richard Faulkner
darla - 12 Dec 2003 17:24 GMT
> Which trial is it?
>
> Janet is on BCIRG006
It is NCCTG N9831. I just want to take this time to wish all of you
the Merriest of Christmas' and the Happiest of New Years!
Darla
*shaz^ - 12 Dec 2003 12:14 GMT
Darla,
Wishing you good vibes for your chemo on Monday.
Good Luck,
Take care,
Shaz x
> I have scheduled the surgery to put in a port for next week. I would
> have never thought about this so thanks for the suggestion Tim. My onc
[quoted text clipped - 46 lines]
> > >faith in God is helping alot but any help you guys have would be
> > >appreciated. Thanks so much Darla