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Medical Forum / Diseases and Disorders / Breast Cancer / June 2006

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Cut loose & scared

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Eva - 15 Jun 2006 23:45 GMT
I just completed one year of Herceptin treatment and that's it--no more
treatment for me except to continue Arimidex for 4 more years.  I was first
diagnosed with a Stage 3 tumor (8 cm) two years ago.  I went through chemo,
mastectomy, radiation, and then the year of Herceptin.  I am very upset.  I
feel like now I have no more protection and my cancer will metastasize.  I
feel like now I'm helpless, nothing more can be done to save me.  I am 58
years old but I am NOT FINISHED YET!  My father who was the meanest son of a
bitch to walk the earth lived to be 91.  It's not fair.  I don't want to
die.

I think I need to go to a support group or something.  I feel like I'm going
mad.

Eva
pami - 16 Jun 2006 02:37 GMT
I am in stage 2 with 3 positive nodes.  I am on my second chemo and I can
feel your frustration.  It's so hard to be dragging and yet you need to
fight...it's very hard.  I noticed I am more beat with this second chemo.  I
just miss my energy.  I have to go for blood work next week and next chemo
in 3 weeks.  The nausea is the pits.  Some would be in bed but I am up
trying to get this done and that done.  I am off to my recliner chair now.
Hopefully tomorrow I will feel good.. Are you going to get a reconstruction?
I want to as soon as I can.  I am 51.
Pami
Eva - 16 Jun 2006 04:00 GMT
> I am in stage 2 with 3 positive nodes.  I am on my second chemo and I can
> feel your frustration.  It's so hard to be dragging and yet you need to
[quoted text clipped - 4 lines]
> Hopefully tomorrow I will feel good.. Are you going to get a reconstruction?
> I want to as soon as I can.  I am 51.
---------------
I had to delay reconstruction because I needed radiation, but now I am in
the middle of having reconstruction.  It is done in stages.  I've had a
tissue expander for 4 months now.  It kind of looks like a muffin stuck onto
my chest.  On July 31 I am schedules to have the "permanent" implant
inserted.

(I'm supposed to make up my mind now whether I want a saline-filled or
silicone gel-filled implant.  I'm leaning towards the silicone.  What the
hell.  The risk of the cancer coming back and killing me is much higher than
the risk of the implant causing me serious harm.)

Eva
John Richards - 16 Jun 2006 21:11 GMT
> (I'm supposed to make up my mind now whether I want a saline-filled or
> silicone gel-filled implant.  I'm leaning towards the silicone.  What the
> hell.  The risk of the cancer coming back and killing me is much higher than
> the risk of the implant causing me serious harm.)

To give you one data point, my deceased wife had saline implants
for her reconstruction. Although they looked okay, they did not
feel very natural to the touch. I understand the silicone ones
have a more natural feel.

Signature

John Richards

pami - 16 Jun 2006 21:29 GMT
I might go the trans flap....but doctor told me that one is very painful.
Panu
alex - 16 Jun 2006 23:48 GMT
Back issues may disqualify you from a tram flap.
>I might go the trans flap....but doctor told me that one is very painful.
> Panu
alex - 16 Jun 2006 03:19 GMT
You will have some protection, the arimidex. What does your oncologist feel?
The doc must feel you are doing ok, since they are taking you off the
Herceptin..... Alex

>I just completed one year of Herceptin treatment and that's it--no more
> treatment for me except to continue Arimidex for 4 more years.  I was
[quoted text clipped - 15 lines]
>
> Eva
Eva - 16 Jun 2006 04:12 GMT
> You will have some protection, the arimidex. What does your oncologist feel?
> The doc must feel you are doing ok, since they are taking you off the
> Herceptin..... Alex
----------------
The protocol in the U.S. for Herceptin treatment (of Stage 3 cases) is one
year.  In Europe, she told me, some studies have continued Herceptin for two
years.  My heart function (ejection fraction) is down from 69 last year to
62 this year, still within normal limits, but the risk of developing CHF
precludes continuing Herceptin indefinitely.

I don't feel protected by Arimidex, because my tumor was "weakly" ER+.  It
was strongly HER2+.  This new stuff they have tested in Europe, Tykerb
(lapatinib) sounds wonderful to me.  It's given in pill form, its risk of
heart damage is lower than Herceptin's, and unlike Herceptin it can pass
through the blood-brain barrier and protect you from brain metastases.  But
it's not yet approved for sale in the U.S., and even in clinical trials, my
oncologist said, it's only being used in patients who are already in Stage
4.

In ten years, she said, it will probably be approved for use in
earlier-stage HER2+ patients.

That doesn't do me any good *now*!!!!!!!!!!!!!!!!!!!!!!

Eva
Mary Fisher - 16 Jun 2006 12:46 GMT
> You will have some protection, the arimidex. What does your oncologist
> feel? The doc must feel you are doing ok, since they are taking you off
> the Herceptin..... Alex

Yes, we should be guided by our oncologists, who understand far more about
the many kinds of cancer than most people on a support group who only have
personal experience to go on. Few other people's experiences will be the
same as yours.

Don't believe what's said in the popular press, that's about headlines and
selling papers.

Mary
who has no idea what drugs she took but is still around after eight years
:-)

>>I just completed one year of Herceptin treatment and that's it--no more
>> treatment for me except to continue Arimidex for 4 more years.  I was
[quoted text clipped - 16 lines]
>>
>> Eva
kilikini - 16 Jun 2006 10:30 GMT
> I just completed one year of Herceptin treatment and that's it--no more
> treatment for me except to continue Arimidex for 4 more years.  I was first
[quoted text clipped - 10 lines]
>
> Eva

Sweetie, we are your support group, 'cause we're all going through this.  It
isn't easy and, no, it isn't fun, but we're all trying.

Keep your spirits up.  I know it's hard and I know you hurt, but you're not
alone, okay?

kili
pami - 16 Jun 2006 21:29 GMT
I agree we are here for you as well.
Pami
A. P. Thorsen - 16 Jun 2006 15:46 GMT
> I just completed one year of Herceptin treatment and that's it--no more
> treatment for me except to continue Arimidex for 4 more years.  I was first
[quoted text clipped - 10 lines]
>
> Eva

Hi, Eva,

There IS hope!  (And you're not helpless.)

I was diagnosed with stage 3 BC almost 6 years ago at age 44, 5 tumors
in left breast (largest 3.1cm), one in right, positive node on my left
side.  "Only" 6 months of chemo (3 mo. AC, 3 mo. Taxol), radiation on
left (after bilateral mastectomy), followed by a couple years of
Tamoxifen & subsequently Arimidex which I'm still taking.  So far (knock
wood), I'm doing fine and feeling just great.

I have a close friend, stage 3 diagnosis over 7 years ago.  Her very
aggressive tumor was over 7 cm, shrunk through neo-adjuvant
(pre-surgery) AC & Taxotere to the point where she was able to have
lumpectomy instead of mastectomy.  She's still here, and also doing
fine.  She's . . . hmm . .  . 53 now, I think.

After treatment (especially while still fatigued and stressed from
treatment), I found I had to really work at feeling better, at feeling
strong again.  You'll get there!

There are also some hints of things *we* can do *ourselves* to improve
our odds -- i.e., things for which there is *some* scientific evidence
but not yet multiple strong & well-controlled studies to definitively
prove benefits.  Happily, these are (sorta) easy things, with mostly
good side effects:

- Moderate amounts of vigorous exercise (several hours a week)  See, for
example:

http://www.news.harvard.edu/gazette/2005/05.26/01-breastcancer.html

- Weight loss (also may reduce lymphedema risk).  For example, see:

http://jco.highwire.org/cgi/content/full/20/4/1128

and

http://tinyurl.com/fb9o6

- Good diet - such as lots of colorful fruits, veggies.  For exmaple, see:

http://www.breastcancer.org/research_diet_080002a.html

and

http://www.cancer.gov/clinicaltrials/results/low-fat-diet0505 (note the
bit about ER- BC, since you're concerned yours is only weakly ER+)

There are no guarantees in *anyone's* life, and sometimes some of us do
all the right things but still have negative outcomes . . . BUT:
many/most of us are gonna make it, you're not alone, you're not
helpless, you do have strength and power, and you *can* beat this
<bleep> disease.

Hang in there!

Ann T.
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Barb - 16 Jun 2006 23:14 GMT
Hi Eva,
I vividly remember having truly ambivalent feelings at the end of my
treatment (22 years ago).  As much as I wanted the chemo to be done, when it
ended I felt like I was no longer doing anything proactive to combat the
disease.  Back then they didn't even offer Tamoxifen routinely.  Just two
years ago, my oncologist told me he didn't need to see me any longer, and I
had a few bad moments at the thought of a simple yearly visit ending!  There
are no magic words and no specific number of months or years that will give
you belief in your wellness....just takes time.  I'm sure you'll do all the
vigilant things that need to be done to keep tabs on your health. As Ann has
said, "There is hope".  Hugs to you, Eva.

Barb
Mary Fisher - 17 Jun 2006 09:47 GMT
> Hi Eva,
> I vividly remember having truly ambivalent feelings at the end of my
[quoted text clipped - 4 lines]
> and I had a few bad moments at the thought of a simple yearly visit
> ending!

Yes, I felt like that when my neurosurgeon said that he didn't neet to see
me any more. I really looked forward to those annual visits - but he was
dishy :-)

When the first five years of my bc research program came ot an end I was
offered the opportunity of remaining on it for observation for another five,
I grabbed it! I was told that most women just want to get away from the
clinics sa.s.a.p. and try to forget the whole matter.

> There are no magic words and no specific number of months or years that
> will give you belief in your wellness....just takes time.

And in this matter as everything else we're all different, in every way
except our humanity.

> I'm sure you'll do all the vigilant things that need to be done to keep
> tabs on your health. As Ann has said, "There is hope".  Hugs to you, Eva.

And from me,

Mary

> Barb
Eva - 17 Jun 2006 16:13 GMT
Thanks to all who responded for your good wishes and good advice.  I'm
feeling less panicky now.  You're good people!

Eva
didlems - 18 Jun 2006 10:06 GMT
>I just completed one year of Herceptin treatment and that's it--no more
> treatment for me except to continue Arimidex for 4 more years.  I was
[quoted text clipped - 15 lines]
>
> Eva

Eva,
this is how oestrogen neg bc women feel. After surgery, chemo and rads,
thats it ! your on your on ! did you know this ?
kathleen
alex - 18 Jun 2006 10:22 GMT
> this is how oestrogen neg bc women feel. After surgery, chemo and rads,
> thats it ! your on your on ! did you know this ?
> kathleen
Yeah, I feel that way too estrogen neg...if cancer returns only treatment is
chemo!  Alex
Jayu - 19 Jun 2006 05:09 GMT
Eva,
I think its a good thing. you can now try and put this behind you and
move on with your life. and may you never have to undergo any of this
again.
Im sure you will do just fine. :)
cheers,

Jayu

> I just completed one year of Herceptin treatment and that's it--no more
> treatment for me except to continue Arimidex for 4 more years.  I was first
[quoted text clipped - 10 lines]
>
> Eva
Eva - 21 Jun 2006 02:00 GMT
> Eva,
> I think its a good thing. you can now try and put this behind you and
> move on with your life. and may you never have to undergo any of this
> again.
> Im sure you will do just fine. :)
---------------
Well, thanks, Jayu, but really the only difference between me and your mom
is that I got Herceptin.

Time will tell.

Eva
 
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