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Medical Forum / Diseases and Disorders / Breast Cancer / December 2004

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Anyone successful with ER/PR pos & Her-2 pos?

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Rich R. - 04 Dec 2004 01:15 GMT
This is my Mom's condition..along with emphesema
allan grossman - 04 Dec 2004 12:06 GMT
>This is my Mom's condition..along with emphesema

We've had good luck.  My wife Deborah is ER/PR+ and Her2+ and has been
doing just swimmingly for more than five years.

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

Rich R. - 04 Dec 2004 19:25 GMT
What treatment route did you take? You can e-mail me directly if you prefer.
Rich

> >This is my Mom's condition..along with emphesema
>
> We've had good luck.  My wife Deborah is ER/PR+ and Her2+ and has been
> doing just swimmingly for more than five years.
allan grossman - 07 Dec 2004 23:31 GMT
>What treatment route did you take? You can e-mail me directly if you prefer.

Hi, Rich -

Deborah was Stage IV at diagnosis in August 1999 with a 5.5cm primary
tumor and mets to both lungs.  We got into a clinical trial of AC +
Taxotere every three weeks - she had good response to this regimen but
it's pretty tough chemo.  There is a limit to how much Adriamycin you
can get because it's cardiotoxic and they removed that from the mix
after treatment #8.  Four treatments after that she was dropped from
the trial for disease progression.

After that, we did weekly Navelbine + Herceptin and Tamoxifen.  After
six months they removed Navelbine from the mix and we continued on
Herceptin and Tamoxifen for another six months.  At that time her
oncologist pronounced her in remission and we continued on Tamoxifen.

Her tumor markers started rising in November 2003 and in February of
this year she went back on Navelbine + Herceptin and Arimidex instead
of Tamoxifen.  Because she's perimenopausal she gets a monthly
injection of Zoladex to keep her ovaries shut down so the Arimidex
will have some effect.  After six months we removed Navelbine from the
mix again and now she's on straight Herceptin (triple dose every three
weeks) plus Arimidex and the monthly Zoladex I mentioned earlier.

Right now her CA27.29 marker hovers around 30 (under 40 is normal) and
although there are still some small tumors in her lungs they appear to
be stable and life is good.

Deborah's a medical miracle - she's happy and other than a heck of a
case of lymphedema on her surgical side, she's reasonably healthy.

Good luck to you and yours.

allan

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

richreilly@hotmail.com - 08 Dec 2004 02:20 GMT
Allan,
Where did/does Debra get treatment?
allan_grossman@hotmail.com - 08 Dec 2004 14:46 GMT
We live in Michigan - she gets treatment at Battle Creek Health Systems.
lymphedemapeople@aol.com - 18 Dec 2004 16:33 GMT
Hi Allan

Deborah's story is an encouragement to all of us cancer survivors!
Wanted to ask if she is also getting treatment for the lymphedema?  Let
me know if I can help.
Pat O'Connor
Lymphedema People
http://lymphedema.omno.org
Kaye301 - 06 Dec 2004 17:46 GMT
I am both ER+ and Her 2+  I also had 3 types of very aggressive b.c., 9 of 12
positive nodes (although the first CT report said there appeared to be
remaining lymph nodes matted together), extracapsular spread, and extensive
lymphovascular invasion.  I was dx'd in 3/01.  I had a bilateral mastectomy.
Then I had chemo--4 AC and then 5 weeks of radiation.  I then had more chemo--2
Taxol and 2 Taxotere along with a year of weekly Herceptin.  2 months after
last taxane I started Arimidex (while still on Herceptin).  One week after last
Herceptin I had a complete hysterectomy and salpingo--oopherectomy.  I had
become hypothyroid and had had 3 unexplained attacks of acute pancreatitis 2
mos. after starting Arimidex (don't know if it is related but am also on Beta
Seron for multiple sclerosis which, in combo with other meds may have
contributed to that, although have heard that chemo alone might do it).  I also
then started taking prophylactic Doxycycline, Celebrex (800 mg/day--maximum,
safe level which has been shown to have anti-tumor properties), and then also
started Lovastatin (also shown to have possible anti-tumor properties).  
I also changed my diet radically at time of dx and began an exercise program.
I try to eat alot of vegetables and do vegetable juicing but have gotten a bit
lax for the past few mos--still do but not as much.  
I reduced intake of hormone fed proteins and milk products.  I only buy
non-hormone fed meats now although occasionally eat meat in restaurants.  I had
also been pigging out on cheese and stopped  that.  I drink alot of green and
white tea.  I reduced coffee intake considerably.  I used to have an occasional
glass of wine but stopped that.  However, I drink alot of red (purple) grape
juice along and also have aloe vera juice/gel--made for drinking (organic).
I also lost weight--and think it may have been the cancer--after  not being
able to lose weight with standard diets--I lost 17.5 lbs suddenly and then
reduced wt. another 15.  I did stop eating sugar and flour and processed foods
at the time as well as started exercising.  I am still doing that but gained
more than half back--despite low cal diet.  I am eating bread though...
Oh, and I also began long distance walking--did 2 of the 3-day, 60 mile breast
cancer walks (Susan G. Komen foundation) which reduced sudden onset of sciatic
pain (but also had started statin drug and doubled Celebrex at same time).  
I forgot--also take Zometa (IV infusion--at 'osteoporosis prevention dose'
every 3 mos.
Most tumor marker tests are normal.  Scans show liver lesion (hemangioma? but
tumor never ruled out) and several enlarged retropertioneal nodes and enlarged
aortocaval node.  I have  also had enlarged hilar node and other weird stuff
that shows up.
I recently had new Cellsearch circulating tumor cell (CTC) blood test which had
result of "4."  We still have not had clarification of meaning but that does
suggest that there are tumor cells in the blood stream.
The main type of b.c. I had was/is lobular which presents in different
ways--thickening--on scans both in breast and for metastases.  Scan reports
describe thickenings but nobody has said I have or don't have metastases.  I
also had high grade dcis with extensive comedo necrosis and a rare presentation
of inflammatory breast cancer (in nipple only--about 4" away from main lobular
tumor).
I am thinking about taking other supplements--particularly Ip6 (would buy
organic at health food store without additives).  I am debating about taking
COQ10--can't figure out if it is or isn't helpful.   I also add the spice,
turmeric, to my foods--also supposedly has anti-tumor/anti-cancer properties...
richreilly@hotmail.com - 06 Dec 2004 21:52 GMT
Thanks,
What was your Her-2 ratio?
Kaye301 - 07 Dec 2004 06:21 GMT
richreilly wrote<< Thanks,
What was your Her-2 ratio?>>

My Her2 level was +3
richreilly@hotmail.com - 06 Dec 2004 21:53 GMT
Thanks,
What was your Her-2 ratio?
C. Falise - 09 Dec 2004 00:27 GMT
hi rich-
we've emailed before i believe...
i'm er/pr positive her2new neg.  i was diagnosed at late stage 4 over a year
ago.
i just got good news today, as a matter of fact.  scans show that all of the
organ tumors i had are now gone.  10 lung nodules, 2 liver nodules and one
on kidney... all gone.  my many bone mets are healing.   for the first time
since this whole miserable mess started, my oncologist threw out the word
remission.
i'm 38, was pre-menopausal at diagnosis.  i take femara daily, have zometa
infusions every 3 weeks and get zoladex implant every 3 months to keep
ovaries shut down.  i also take anti-oxidants, try to eat an organic diet
and take green tea.  on the other hand, i still enjoy my wine with dinner,
and i'm still trying to quit smoking cigarettes (yeah, i know).  i've cut it
down by 75% in recent weeks and plan to stop entirely in the next couple of
weeks.
i have a good life overall.  i deal with pain from the bone mets and the
treatment side-effects, but this news is the best i ever hoped for.
i consider it a success.
i hope that your mom has similar results.
good luck, rich.
:)
-christina

> This is my Mom's condition..along with emphesema
A. P. Thorsen - 09 Dec 2004 18:09 GMT
> hi rich-
> we've emailed before i believe...
[quoted text clipped - 5 lines]
> since this whole miserable mess started, my oncologist threw out the word
> remission.

Christina --

Excellent news -- under trying circumstances, of course.  Thanks for
sharing.  I hope things continue to go very, very well!

Ann T.
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