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Old 09-02-2008, 10:57 AM   #1
MCS
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Stand up to cancer program

Joe or anyone else,

will her2 research be discussed? any letters being submitted or request to the stations?

I saw a set of stats for survival of breast cancer up 89% to 5 years but it had an asterisk that it did not apply to us!, her 2 + folks

So of course, I get so angry at this! Why are we so ignored of needed research and treatments.

thanks Joe.
maria
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Old 09-03-2008, 09:14 PM   #2
kcherub
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I haven't heard much on the actual "format" of the program. I am thinking there will be some discussion on therapies, research, etc. My basic understanding of the program is that they will explain their initiative and raise funds for same. We will be watching...Mr. Vedder should be performing "Rise" which has become a (sort of) anthem for me.

We should keep this thread going so that we can all comment on the show this weekend.

Take care,
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Krista
Diagnosed 3/29/2007 @ age 34
Stage 1, Node Neg. (SNB), Grade 2, 1.4 cm. IDC
ER/PR 90%+ HER2 +
6 TCH started 5/25/2007, ended after #5 due to steroid "reactions" and neuropathy in feet and hands
BUT--#6 CH w/o Taxotere
Begin Herceptin alone 9/28/2007
30 rads completed 12/19/2007
Finish Herceptin 5/9/2008
Stopped Tamoxifen early--HATED it.
Married 17 years
13-year old son
3 embies on ice (from 1999)
GA, USA

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Old 09-04-2008, 10:16 AM   #3
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This show is a fundraiser for all cancers, not one specifically to my understanding.
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~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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Old 09-04-2008, 03:14 PM   #4
kcherub
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Yes, that is correct! I am thinking that they will be talking about things to come instead of things that are already out there!
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Krista
Diagnosed 3/29/2007 @ age 34
Stage 1, Node Neg. (SNB), Grade 2, 1.4 cm. IDC
ER/PR 90%+ HER2 +
6 TCH started 5/25/2007, ended after #5 due to steroid "reactions" and neuropathy in feet and hands
BUT--#6 CH w/o Taxotere
Begin Herceptin alone 9/28/2007
30 rads completed 12/19/2007
Finish Herceptin 5/9/2008
Stopped Tamoxifen early--HATED it.
Married 17 years
13-year old son
3 embies on ice (from 1999)
GA, USA

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Old 09-05-2008, 12:15 PM   #5
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I hope to watch this program. I know the intended administration of funds for this goes to ACS research. Personally, I perfer the BREAST CANCER RESEARCH FOUNDATION ( BCRF ) for my donations,as it goes more toward bc research.

Here is the mission statement foe the Stand up to Cancer website..



Here we stand, on the verge of unlocking the answers that will finally conquer the devastation that is cancer.

We now understand the very biology that drives cancer. With knowledge gained from the mapping of the human genome, we can now target the genes and pathways that are involved in turning normal cells into cancerous ones. We are on the brink of possessing a toolbox full of new, advanced technologies just waiting to be adapted to benefit patients. Right before us, so close we can almost touch them, are scientific breakthroughs in the prevention, detection, treatment and even reversal of this disease.

For the first time we can envision the possibility of stopping cancer in its tracks. But just when science is on the verge of giving us the breakthroughs that can end cancer, the will and the funding to do so are disappearing from the national agenda and from our collective consciousness.

Cancer takes one person every minute. One life in a moment. They are our brothers, our sisters, our fathers and mothers, our husbands and wives, our best friends, our children, ourselves. Every day in America 1500 people die and yet the means to save them are literally within our reach. To wait any longer for someone else to save our lives and the lives of those we love is unforgivable.

Inspired to act by our own personal experiences with cancer, we recognize that we can no longer rely on the current system alone to give us the breakthroughs we need. So, we are calling on the public to help take matters into our own hands, investing in a revolution that will change the way scientist and clinicians work to understand and treat these diseases. Stand Up To Cancer is more than a rallying cry. It is a galvanizing force created to urgently move cancer research forward.

This is where the end of cancer begins: when we unite in one unstoppable movement and Stand Up To Cancer.

How?

Working with the top experts in cancer research, Stand Up To Cancer is forging a new way to develop breakthroughs that will end cancer. We’re putting together the best and the brightest minds in cancer research – those on the edge of accomplishment – investing in their projects and taking the bureaucratic obstacles out of their way. We are building interdisciplinary “Dream Teams” of scientists, clinicians, technicians and other experts, who will focus on a specific cancer problem. We’ll track their progress in real time, so that everyone who invests can see how their participation is creating real change.

Funds will be administered by the American Association for Cancer Research, the largest scientific organization in the world focusing on every aspect of high-quality, innovative cancer research. Together with their scientific Blue Ribbon Advisory Committee, comprised of world-class scientists across several disciplines and patient advocates, the most promising projects will be identified.
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Old 09-05-2008, 06:24 PM   #6
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Well, no Ed, but I thought it was pretty good. Sidney Kimmel is a freakin' saint, I tell ya'. Besides, I just saw Ed two weeks ago (tonight, RIGHT now), so it's okay. I actually liked the in-between stuff better than the performances.

What do we think the woman featured got? I was thinking Herceptin, but they said she didn't do any chemo. Did she get Herceptin without chemo, or something else?

Take care,
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Krista
Diagnosed 3/29/2007 @ age 34
Stage 1, Node Neg. (SNB), Grade 2, 1.4 cm. IDC
ER/PR 90%+ HER2 +
6 TCH started 5/25/2007, ended after #5 due to steroid "reactions" and neuropathy in feet and hands
BUT--#6 CH w/o Taxotere
Begin Herceptin alone 9/28/2007
30 rads completed 12/19/2007
Finish Herceptin 5/9/2008
Stopped Tamoxifen early--HATED it.
Married 17 years
13-year old son
3 embies on ice (from 1999)
GA, USA

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Old 09-05-2008, 09:01 PM   #7
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Aacr

The HER2 Support Group holds membership in the American Association of Cancer Research. We attended their annual meeting last April in San Diego.

Maryann, Stephanie, Christine and I were extremely impressed with their presentation and will encourage our members to apply for admission to their advocate program for next years meeting in Denver.

As most members of the AACR do basic research. our ladies were of special interest as many of them rarely see the "final product" of their research...CANCER SURVIVORS

Regards
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Old 09-05-2008, 09:46 PM   #8
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Krista, I was thinking the same thing about what that woman may have received. Her treatment was 2-1/2 years ago around the same time as mine. They said she was given a trial, am I correct? but no chemo. They were defiantely referring to herceptin I would think, was it administered differently, got me to wondering...any thoughts. I do wish they would have went into a little more detail on the treatments and where they were performed. The man who had those" chips" in him that could tell if there was even the slight formation of cancer so that they could do active treatment was pretty interesting, i might be interested in that but it didn't give details and i know my oncologist doesn't do it...sherryg683
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Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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Old 09-05-2008, 10:45 PM   #9
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www.standup2cancer.org

Saw the show tonight and thought it was a very powerful way to deliver an important message. The march of dimes really funded the cure for polio. My mom was a young polio survivor so the march of dimes story was one I heard my whole life. If STAND UP 2 CANCER can fund a cure and if all of our dollar donations (today's dime) can help then I am all for it. If everyone just downloaded the .99 Just Stand Up song from itunes - it could help. I loved that the two candidates announced their cancer plan on this show as well. And I loved that I knew one survivor who was profiled by Halle Berry - a girl from my support group. I hope that they raise a pile of money and that our best and brightest docs can get the funds to find a cure.
xo flori

PS: Sherry - the "strip" in the blood test they mentioned is the CTC - circulating tumor cells test-available now. The stage 4 woman who taught aerobics and "didn't miss a day of work" - the one who is now "no evidence of cancer" (NEC - NED's cousin was treated with weekly herceptin. As far as doing more for yourself...if you are NED then I say dance with him and don't worry. If things change there will be plenty of time to arm yourself with information. If it will give you peace of mind then you could figure out your next steps but if I were in your shoes I'd just dance!
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1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 09-05-2008, 11:45 PM   #10
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Yes, they did mention the HER2. What was interesting (I think I heard it correctly) was this young woman that had advanced bc came on and testified that she had HER2, but it sounded like she had the herceptin and no chemo.
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 09-06-2008, 08:09 AM   #11
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In my opinion - I am a little disappointed in last night's Stand Up to Cancer. To me, it was just another chance for Hollywood to look good and just another fundraiser. Don't get me wrong any money going towards research is a good thing, but I am tired of being made "aware." I am more than aware of cancer as are most people in the world. Maybe some don't know it as intimately as we do, but they know someone that has had it...I wish people would stop wasting money on paraphernalia and big time events and just give the money directly to the researchers so that no money is going towards overhead and all the other incidentals that go along with big time events. JMO
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Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
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Old 09-06-2008, 08:34 AM   #12
Brenda_D
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I kind of liked it. Especially since Her2 was specifically mentioned. I don't see much about Her2 pos. anywhere in the general CA world.
As far as being made aware, we CA survivors are all very aware. I think this was pointed towards the general public that's has little knowledge of the vast amount of people this affects.
I went to the Cafe Press website and ordered a Survivor T shirt. I had been wanting one anyway and if I can get one have some of the proceeds go to research, that's o.k. with me.
Just my thoughts.
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Old 09-06-2008, 09:01 AM   #13
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I felt as though one motivation for the evening was to make the masses see that this is a "war" that we can win. To emphasize the scope of the issue and convince folks that based on statistics they all have a dog in this fight or skin in the game. To show them that if they are not personally fighting the war right now that there is a good chance that the will some time before they die...

I hope that last night's event touched people who will donate even $1 or $5. The more people engaged the better. A little can go a long way if everyone participates. I hope that the March of Dimes example helps people believe that they CAN make a difference. Come on - we get / got to the moon... this can be done if it is the will of the people!!!

I have had plenty of big time bosses in the business world that emphasize the fact that you don't fight battles you can't win. These same people rally the troops (meaning the people who work for them) when "they (the bosses)" decide that there is a battle that "MUST" be won. I once had a really big boss pull me aside and tell me not to ever believe it when a "boss" says something can't be done. She told me that means that the "bosses" haven't made it a priority. Well, I think many people at all levels believe that this is a battle we can't win. Changing that perspective is so important.

Early detection works well for some cancers. Breast cancer, sometimes. As a stage IV gal who was diagnosed "early" two times before mets I say early detection is extremely important but we need more.

Just my thoughts. I was very moved by the show and extremely grateful for the effort.

Thanks, Carolyn
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Old 09-06-2008, 09:58 AM   #14
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I thought the program was good. It was "real" and out their. I like the fact that 100 percent of the donations go directly to research and I like the idea that many people (who aren't directly affected with cancer) were able to hear and read at the bottom of the screen the grim statistics associated with this disease. Until it touches you directly I don't believe you get it, but programs such as this help make it real.

We have an MDA telethon and many others.....cancer has become an epidemic and it is time to start dumping money into this disease and find a cure for cancer.

I cried through many portions of the show - those wounds open easily down deep.....There is hope friends....

Love,

Mary Jo
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Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

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Old 09-06-2008, 10:28 AM   #15
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I happened to tune in to the channel and saw the program. I was heartened that "Her-2" breast cancer was featured in the very beginning. It was also quite interesting that the NFL program started right after. I did not even realize that 'Stand up for Cancer' program had ended when the sports thing started. The producer probably arranaged the time so more people could see it (even if accidentally.)

Any publicity is good publicity. Glad we made 'headlines'.
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Old 09-06-2008, 10:49 AM   #16
Patb
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I also thought the program was good with Robin and
some of the survivors and the mention of Her2 and
how the women is thriving today. It puts a face on
cancer and even though its celebs having the show
we are all better for it though research. Other people
do not know everything about cancer if they have
not been affected by it so this just opens the door a
little and gives them a little knowledge.
patb
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Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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Old 09-06-2008, 12:26 PM   #17
StephN
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Angry Sobering money stats ...

Sorry we missed it, but I did not know the time or the channel and did not look on the TV menu. The Mariners were hosting the Yankees here and hubby was more interested in seeing our sorry team beat those "old guys."

Our paper did have a column on the editorial page, mentioning a bill in Congress right now introduced by Sen. Specter, for an additional $1.2 billion for the NCI this year to add to the $4.8 billion it already is getting.
(Article says the bill is unlikely to pass - so start rattling the cages of your representatives!!!)

One key paragraph in the article that stood out:

"The vast majority of funding for cancer research in this country comes from the federal government, via the National Cancer Institute, which has an annual budget of $4.8 billion. That may sound like a lot, but it's less than two-tenths of 1 percent of the federal budget. It's also less than 10% of what americans spend each year on soft drinks."

I found that last part stunning until I thought about the usual contents of grocery carts in front of me in the checkout lines. Just because WE buy so little of that stuff, doesn't mean much the rest of the populace doesn't down several cans or plastic bottles worth per day. UGH!
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 09-06-2008, 01:06 PM   #18
Brenda_D
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To those who missed it and would like to see it. You can watch it on the web here-
http://www.nbc.com/Movies_Specials_M...ideo/episodes/

I don't know how long it'll be available, so watch it while you can.
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Old 09-07-2008, 09:56 AM   #19
RobinP
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Than1ks Brenda
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2002- dx her2 positive DCIS/bc TX Mast, herceptin chemo
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