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Old 07-16-2009, 05:26 PM   #1
Midwest Alice
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Exclamation The Capital needs to hear from us

The capital needs to hear from us

Hi Everybody, Just wanted to give a heads up on the Health care bills that are going through both houses. We are very informed citizens who have extensive experience with the health care system. We also have the privilege of information of our friends who live in Canada and across the pond who are on a different type of health care system.

Please call your Senators and Congressmen and let them know you are a breast cancer survivor. They need to know your experience and thoughts on health care. The capital switchboard number is 1-202-224-3121…ask for your representative.

The Health care bills are being debated every day and night live on C-Span. The house is on one channel and the senate on another. This debate will be going on for the next three weeks. I have been learning a lot because I have been watching it off and on all week.

Changes will be made because everyone believes we can make health care better. And there is an agreement on stopping exclusions from coverage for pre-existing illness.

OUR knowledge is very valuable in the decision-making going on in our country today.

Joe, This is not political… it is informational and educationally driven.

Thanks for being there for me
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Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."

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Old 07-16-2009, 07:16 PM   #2
Mary Jo
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Thanks Alice for bringing us up to snuff. Important information.

Mary Jo
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"Be still and know that I am God." Psalm 46:10

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

<>< Romans 8:28
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Old 07-16-2009, 10:07 PM   #3
vickie h
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Thanks, Alice. Our very lives may depend on what happens next with healthcare. Very important that we become involved and educated and act on these things.
Love,
Vickie
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Love and Hugs, Vickie

Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.


Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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Old 07-16-2009, 11:28 PM   #4
Chelee
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Yes, this is a VERY important issue right now and people should be staying well informed on this health care reform bill. I've been busy writing emails & making phone calls...along with passing information to everyone on my email list.

Vickie said it all...our lives may depend on what happens next. Thanks for bringing this to the board Alice.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 07-16-2009, 11:54 PM   #5
StephN
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Question

I don't have corrobative info, but I heard that there will be a 4.5% IRS tax above and beyond what we already pay to fund this health care.
I, for one, want to keep what I have, as it is the best I have ever had in the 9 plus years I have had to deal with this disease.
I am not keen on paying my current dues plus another 4.5%.

So much confusion over this issue. But I don't want to lose what I have and be taken to the cleaners for something that is not as good.

Either I give up what I have and take "pot luck" or pay more for what???
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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 07-17-2009, 06:33 AM   #6
Brenda_D
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I have been watching it closely. My husband and I may soon be out of insurance, so it's very important to me.
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12/12/06- IDC Stage III, 4x A/C, 35 rads, Herceptin 1 year
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Old 07-17-2009, 09:07 AM   #7
juanita
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thanks alice for bringing this up. will have to call!
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dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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Old 07-19-2009, 06:06 AM   #8
sarah
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Good idea, my husband and I have already contacted ours. Unfortunately Congressmen/women (I have a little more faith in senators) will nitpick to get their areas more so it won't be a good program. they should look at the French system which is constantly rated the best in the world and costs 1/2 the price of the US costs. They could also look at the French example for the stimulus program which is going great guns here. Of course I realize the word France makes people see red but hey if they do something well, why not use it.
unfortunately the health insurance companies want to protect their extremely profitable business and will produce scary tv commercials again and americans will get scared and voila no new ideas or half baked ones that fail.
so glad I'm in France for my healthcare. and I chose my own doctors!!! and I've sometimes changed doctors.
I'm sorry a universal healthcare system won't work in the US because I have friends who are not getting the healthcare they need and they've worked all their lives and now retired. So I do care about the reform even though I will never need it thank goodness. and I know the Canadians feel the same way.
I think all americans (they do it in France) should pay a TV fee per family for having a tv. here it's about 120 euro a year (there are exceptions or small incomes) because everyone's addicted to tv so would be willing to pay for it. Just as smokers will pay for cigarettes. Anway most people anyway pay more for cable.
Good luck all of you in the US. Too bad Ted Kennedy is so ill; he's been fighting for one as long as he's been a senator.
Interesting that no one complained about the billions spent in Iraq that could have financed all of this easily.
universal healthcare is wonderful, hassle free, cost efficient and fair.
Americans should think of it as putting in solar to heat their water, it may take 10 years to pay itself off but then it's cheap.
Now if only congress will prove to be patriots and not selfish nitpickers.
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Old 07-19-2009, 09:59 AM   #9
Rich66
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Sarah,
Does this article match up with your understanding?
http://www.businessweek.com/magazine...8/b4042070.htm

A key point there is that doctors make less money but are ok with that due to having free schooling and less need for malpractice insurance.
In the US there is a huge difference between what doctors and facilities charge privately vs Medicare/Medicaid.
In essence, non-government payment keeps government programs afloat. And I wonder whether studies of new tx might decrease if big pharma doesn't see potential windfalls to offfset the failures. They seem to depend on the relative lack of price controls in the US to offset agreements with price control countries.
Ah...anyways..I think the issue inherently involves a lot of economic and cultural entanglements and deserves serious discussion before moving ahead.
Here's a pretty detailed article on the French system:
http://www.medicalnewstoday.com/articles/9994.php
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Old 07-20-2009, 05:43 AM   #10
sarah
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Hi Rich,
good email. It's a difficult subject for the USA. Maybe think Dutch!
Well, in France it's not 20,% it's 8% after many deductions for healthcare.
Expats that spend more than 3 months a year in France, are supposed to pay into the system. We did immediately but many don't and aren't in jail.
the NY times voted France the best healthcare for the money. The Dutch also have an excellent healthcare system and maybe Americans would be more comfortable investigating that system.
Here in France, I had cancer and saw a top oncologist within the week - if it's an emergency - you get moved to the top of the list. same with surgery. I love not dealing with health insurers - I dealt with cancer in the US and was in tears often about the limitations of a supposedly great insurance so I'm thrilled to be here. If the healthcare system here goes broke, France will not longer exist!!! the French will fight for their excellent health insurance.
We've been in "public" hospitals and "private" hospitals and the bills have been ridiculously small in both.
Americans seem obsessed by taxes and are unwilling to pay for anything: better teachers, schools, more police and firemen, fixing roads, bridges, etc.
I don't think healthcare will pass in the USA. It saddens me but it doesn't effect me luckily anymore but I'm not selfish enough not to care a damn. I just hope everyone in the USA makes oodles of money so they can afford the healthcare they deserve.
here's an article from an american newspaper:
Healthy examples

Plenty of countries get healthcare right.

By Jonathan Cohn | July 5, 2009
“I DON’T WANT America to begin rationing care to their citizens in the way these other countries do.”
That was Arizona Senator Jon Kyl, speaking last month about healthcare reform. But it could have been virtually any other Republican, not to mention any number of sympathetic interest groups, because that’s the party line for many who oppose healthcare reform. If President Obama and his supporters get their way, this argument goes, healthcare in America will start to look like healthcare overseas. Yes, maybe everybody will have insurance. But people will have to wait in long lines. And when they are done waiting in line, the care won’t be very good.
Typically the people making these arguments are basing their analysis on one of two countries, Canada and England, where such descriptions hold at least some truth. Although the people in both countries receive pretty good healthcare - their citizens do better than Americans in many important respects - they are also subjected to longer waits for specialty care and tighter limits on some advanced treatments.
But no serious politician is talking about recreating either the British or the Canadian system here. The British have truly “socialized medicine,” in which the government directly employs most doctors. The Canadians have one of the world’s most centralized “single-payer” systems, in which the government insures everybody directly and private insurance has virtually no role. A better understanding for how universal healthcare might work in America would come from other countries - countries whose insurance architecture and medical cultures more closely resemble the framework we’d likely create here.
Last year, I had the opportunity to spend time researching two of these countries: France and the Netherlands. Neither country gets the attention that Canada and England do. That might be because English isn’t their language. Or it might be because they don’t fit the negative stereotypes of life in countries where government is more directly involved in medical care.
Over the course of a month, I spoke to just about everybody I could find who might know something about these healthcare systems: Elected officials, industry leaders, scholars - plus, of course, doctors and patients. And sure enough, I heard some complaints. Dutch doctors, for example, thought they had too much paperwork. French public health experts thought patients with chronic disease weren’t getting the kind of sustained, coordinated medical care that they needed.
But in the course of a few dozen lengthy interviews, not once did I encounter an interview subject who wanted to trade places with an American. And it was easy enough to see why. People in these countries were getting precisely what most Americans say they want: Timely, quality care. Physicians felt free to practice medicine the way they wanted; companies got to concentrate on their lines of business, rather than develop expertise in managing health benefits. But, in contrast with the US, everybody had insurance. The papers weren’t filled with stories of people going bankrupt or skipping medical care because they couldn’t afford to pay their bills. And they did all this while paying substantially less, overall, than we do.
The Dutch and the French organize their healthcare differently. In the Netherlands, people buy health insurance from competing private carriers; in France, people get basic insurance from nonprofit sickness funds that effectively operate as extensions of the state, then have the option to purchase supplemental insurance on their own. (It’s as if everybody is enrolled in Medicare.) But in both countries virtually all people have insurance that covers virtually all legitimate medical services. In both countries, the government is heavily involved in regulating prices and setting national budgets. And, in both countries, people pay for health insurance through a combination of private payments and what are, by American standards, substantial taxes.
You could be forgiven for assuming, as Kyl and his allies suggest, that so much government control leads to Soviet-style rationing, with people waiting in long lines and clawing their way through mind-numbing bureaucracies every time they have a sore throat. But, in general, both the Dutch and French appear to have easy access to basic medical care - easier access, in fact, than is the American norm.
In both the Netherlands and France, most people have long-standing relationships with their primary care doctors. And when they need to see these doctors, they do so without delay or hassle. In a 2008 survey of adults with chronic disease conducted by the Commonwealth Fund - a foundation which financed my own research abroad - 60 percent of Dutch patients and 42 percent of French patients could get same-day appointments. The figure in the US was just 26 percent.
The contrast with after-hours care is even more striking. If you live in either Amsterdam or Paris, and get sick after your family physician has gone home, a phone call will typically get you an immediate medical consultation - or even, if necessary, a house call. And if you need the sort of attention available only at a formal medical facility, you can get that, too - without the long waits typical in US emergency rooms.
This is particularly true in the Netherlands, thanks to a nationwide network of urgent care centers the government and medical societies have put in place. Not only do these centers provide easily accessible care for people who use them; they leave hospital emergency rooms free to concentrate on the truly serious cases. Tellingly, a Dutch physician I met complained to me that waiting times in her emergency room had been getting “too long” lately. “Too long,” she went on to tell me, meant two or three hours. When I told her about documented cases of people waiting a day, or even days, for treatment in some American emergency rooms, she thought I was joking. (In a 2007 Commonwealth Fund survey, just 9 percent of Dutch patients reported waiting more than two hours for care in an ER, compared to 31 percent of Americans.)
Dutch and French patients do wait longer than Americans for specialty care; around a quarter of respondents to the Commonwealth Fund survey reported waiting more than two months to see a specialist, compared to virtually no Americans. But Dutch and French patients were far less likely to avoid seeing a specialist altogether - or forgoing other sorts of medical care - because they couldn’t afford it. And there’s precious little evidence that the waits for specialty care led to less effective care.
On the contrary, the data suggests that while American healthcare is particularly good at treating some diseases, it’s not as good at treating others. (In some studies, the US did pretty well on cardiovascular care, not so well on diabetes, for example.) Overall, the US actually fares poorly on measures like “potential years of lives lost” - statistics compiled by specialists in an effort to measure how well healthcare systems perform. In a 2003 ranking of 20 advanced countries, the US finished 16th when it came to “mortality amenable to healthcare,” another statistic that strives to capture the impact of a health system. The Dutch were 11th and the French were fifth. These statistics are necessarily crude; diet, culture, and many other factors inevitably affect the results. But, taken together, they make it awfully hard to argue that care in these countries is somehow inferior. If anything, the opposite would seem to be true.
Critics of health reform frequently point to cancer as proof that American healthcare really is superior. And, it’s true, the US has, overall, the world’s highest five-year survival rate for cancer. But that’s partly a product of the unparalleled amount of government-funded research in the US - something healthcare reform would not diminish. Besides, it’s not as if the gap is as large or meaningful as reform critics frequently suggest. France (like a few other European countries) has survival rates that are generally close and, for some cancers, higher. Much of the remaining difference reflects differences in treatment patterns that have nothing to do with insurance arrangements and everything to do with idiosyncratic medical cultures. This is particularly true of prostate cancer, where a staggeringly high survival rate in the US seems to be largely a product of aggressive US treatment - treatment that physicians in other countries, and increasingly many specialists here, consider unnecessary and sometimes harmful.
None of this is to say that either the Dutch or French systems are perfect. Far from it. In both countries, healthcare costs are rising faster than either the public - or the country’s business interests - would like. And each country has undertaken reforms in an effort to address these problems. The French have started to introduce some of the managed care techniques familiar to Americans, like charging patients extra if they see specialists without a referral, while developing more evidence-based treatment guidelines in the hope that it will reduce the use of unnecessary but expensive treatments. The Dutch overhauled their insurance arrangements a few years ago, to introduce more market competition and reward healthcare providers - that is, doctors and hospitals - who get good results.
But cost is the one area in which France and the Netherlands are a lot like Canada and England: They all devote significantly less of their economy to healthcare than we do. The French spend around 11 percent of their gross domestic product on healthcare, the Dutch around 10. In the US, we spend around 16 percent. And, unlike in the US, the burden for paying this is distributed across society - to both individuals and businesses - in an even, predictable way.
Of course, reforming health insurance in the US isn’t going to turn this country into France or the Netherlands overnight, any more than it would turn the US into Britain and Canada. The truth is that the changes now under consideration in Washington are relatively modest, by international standards. But insofar as countries abroad give us an idea of what could happen, eventually, if we change our health insurance arrangements, the experience of people in Amsterdam and Paris surely matters as much as - if not more than - those in Montreal and London. In those countries, government intervention has created a health system in which people seem to have the best of all worlds: convenience, quality, and affordability. There’s no reason to think the same thing couldn’t happen here.
Jonathan Cohn is a senior editor of The New Republic, where he writes a blog called “The Treatment.” He is also the author of “Sick: The Untold Story of America’s Health Care Crisis - and the People Who Pay the Price (HarperCollins, 2007).
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Old 07-24-2009, 08:20 PM   #11
hutchibk
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We simply need American solutions.
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 07-25-2009, 05:30 AM   #12
Midwest Alice
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Looks like they are not going to try to push some kind of health care bill before August recess. This is good.

Brenda, I like the way you put it.

The next few months will be important.
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Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."

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Old 07-25-2009, 08:03 AM   #13
sarah
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It will be a miracle if anything gets passed. They owe too much to their "supporters" but we can dream on.
Glad I'm in France but feel badly for friends struggling to stay healthy in the US. If only more people realized how expensive the current "system" is to the US govt. meaning the taxpayer! also for life expectancy the US is #20 in the world!!! of course well after France and Holland.
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Old 07-25-2009, 01:59 PM   #14
Midwest Alice
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Hey Sarah just a little detail on our life expectancy here in the United States.

Our cancer life expectancy here in the United States is one of the top two in the world.

They say our over all life expectancy is lower than France and Canada for example, because of cause of death.

I remember one reason our life expectancy is low is because we have the highest rate of diabetes. We eat too much and the wrong stuff. The other I remember was our high homicide rate. Go figure on that one… I can see the diabetes relationship. There are others I can’t remember. Rich may have documentation, he is so good about finding those type of things. Sorry I don’t have it but I will look around and see what I can find.

Any way… from my research I agree with the folks, who say; if we want to compare two countries life expectancy, and draw a conclusion about their health care systems, cause of death has to be factored in.

Treating Cancer is something we do very well here in the States.

I met the Executive Director of our area Susan B Komen on Friday. She was so nice I think we talked for an hour. I went to see her about applying for a travel scholarship to attend the San Antonio Breast Cancer Symposium in December. Looks like I may be able to help by speaking to groups about the symposium and IBC.

Any way…. she was telling me stories of women who have been dx with cancer and uninsured or unable to meet co-pays. She and many others are making progress in funding treatment for our needy citizens.

Sarah I would like to help your friends who are following through the cracks in our country. If you would put them in touch with me I will contact our local Komen director and we will get them in contact with the right people in their area.

Peace, Alice
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Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."

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Old 07-25-2009, 02:21 PM   #15
hutchibk
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Please overseas girls (and all posters), this was started by Alice as a non-political thread. We need to all try and abide by that, but some are teetering on the edge. Please don't go there.

Philosophies to consider in the debate:

Humane health system (typical American system of health care)

VS.

Eugenic health system
Limiting health consumption
Duty to Die
QALY (quality-adjusted life year/measurement of disease burden in a health system)

The last 3 here are counter-intuitive to American health philosophy, but are written into the Stimulus Bill and into the House Bill that is about to be voted on.
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."

Last edited by hutchibk; 07-25-2009 at 02:27 PM..
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Old 07-25-2009, 02:23 PM   #16
Nancy L
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As a retired benefits manager for a fortune 25 company in the US, I have a lot of experience designing and delivering health care programs for thousands of employees. The program being proposed by congress is not insurance, it is not reform and it will not work. When you offer the same thing to everyone at the same cost, it is called an entitlement program. Our major entitlement programs in the U.S. (Social Security, Medicare, Medicaid/Medical) are all broke. Why would we possibly want to implement another failure. And don't get fooled by the Obama statement that you will be able to keep what you have. Even good companies are going to bail on offering health insurance. And trust me, all major employers have smart lawyers who have made sure they have included language in the documentation you have received that allows them to terminate coverage. Providing excellent health/dental insurance used to be a competitve advantage in hiring the best and the brightest. But most companies are struggling with costs and any benefit that is no longer a hiring advantage will be dropped. So even if you like what you have, when it is no longer available and especially is you have had any illness, your only option will be the public plan. The public plan will be rationing and forget about getting any new innovative breast cancer treatments covered.

One final very important point---any government plan that is designed for the US taxpaying citizens must be the one that every federal employee is on including the president, the congress and all federal workers. If it is good enough for me, than it certainly is good enough for them----remember, I am paying for their coverage. It is outrageous that they have included language in the bills to exclude themselves and keep the rich plan they currently have.

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Old 07-25-2009, 07:01 PM   #17
Midwest Alice
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Hey Nancy,

There is currently a bill by Rep John Fleming House Resolution 615, not sure what state he is from. This bill states: congress members and their families will take what ever health care plan may be passed by the congress... or something like that. I support this bill and have emailed my congressman and ask that he sign it.
Lets see if I dropped in the address and the copy. .. not to experienced at this

House Resolution 615
Over the past few weeks, members of Congress and the American people have come to know the details of the Administration's proposed health care plan. Call it whatever you like, I believe this proposal is nothing more than government-run health care. As a physician, I am amazed at the number of bureaucrats in this House who are quick to claim a government-run health care plan is the reform this country needs. In response to this, I have offered a resolution that will offer members of Congress an opportunity to put their money where their mouth is, and urge their colleagues who vote for legislation creating a government-run health care plan to lead by example and enroll themselves in the same public plan.

Under the current draft of the Democrat healthcare legislation, members of Congress are curiously exempt from the government-run health care option, keeping their existing health plans and services on Capitol Hill. If Members of Congress believe so strongly that government-run health care is the best solution for hard working American families, I think it only fitting that Americans see them lead the way. Public servants should always be accountable and responsible for what they are advocating.

Together we will work to ensure that any plan that is good enough is for American families is good enough for every member of Congress.
Rep. John Fleming’s bill

http://fleming.house.gov/uploads/HR%20615.pdf

A list of Rep. In the house who have co-sponsored bill 615

http://fleming.house.gov/uploads/615%20Cosponsors%207%2023%2009.pdf
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Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."

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Old 07-26-2009, 10:02 AM   #18
Joe
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From Joe - A few Random Thoughts

Please be careful and respectful on what you post here.
I for one cannot see how such important legislation could be considered without public hearings.

It seems that this administration is using the economy as an excuse to rush legislation. I for one do not see how congress can pass important legislation with most members having never read the bill. I believe this is malfeasance on their part.

Personally I do not see a healthcare crisis in this country that would warrant the sweeping legislation that is currently proposed. Most drug companies will provide drugs free or at low cost to the uninsured. The Komen Foundation funds many clinics across America that provide treatment pro bono or at greatly reduced fees.

Any healthcare legislation should include tort reform. Not only is this a serious drain on the healthcare industry but also affects bringing new drugs to market.

Regards
Joe
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Old 07-26-2009, 10:06 AM   #19
Midwest Alice
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Hi All,

I wanted to make two addresses avaible to you;

First: http://www.visi.com/juan/congress/

If you what to find out who your 1 congressman and 2 senators are, just go here and put in your address.

And: http://www.savequalityhealthcare.org/ Here you will find information for doctors and patients about our current and proposed health care.
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Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."

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Old 07-27-2009, 08:05 AM   #20
Colleens_Husband
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There is one very simple and relatively painless health care reform measure that has been taken off the table for discussion and it may be the one single item which absolutely would show a huge cost savings.

Of course, the best way to contain health care costs is to reform medical tort law. Before any doctor can open any type of practice, the first cost they must incur is errors and omissions insurance. The average cost per year of errors and omissions insurance is one hundred thousand dollars for a GP, two hundred thousand for a neurosurgeon, and three hundred thousand for a OB/GYN. This single cost alone makes up roughly half of the budget for most doctor's practices.

Perhaps a larger cost for failing to contain the cost of litigation is that doctors eventually end up practicing defensive medicine. They order unnecessary tests as a way of covering their rear ends from litigation which once again drives up health care costs.

Furthermore, the cost of potential litigation can double or triple the costs of certain drugs.

I'm not suggesting that those injured by a doctor wouldn't have a right to seek redress. Perhaps a medical board could review any case and decides if it has merit before litigation proceeds. Perhaps punitive damages could only be double actual damages, and maybe pain and suffering damages could be reduced, mitigated, or eliminated, by statute. Of course all of these solutions would cost next to nothing.

Most health care proposals that I have heard coming out of Congress refer to limiting the doctor's salaries. If that seems like a fair thing to do, then why not consider limiting the lawyer's salary as well. Every poor medical outcome does not mean that someone should hit the jackpot with lawyers taking a third.

Since no one in Congress is considering tort reform as a way of reducing health care costs, perhaps they haven't thought of this yet. This is where you come in. Let your legislator know that litigation which doubles the cost of medical care is unacceptable. Please remember that lawyers make up the bulk of our federal legislators so using terms like 'blood sucking parasites' won't help get your point across.

Sorry if I offended anyone with this post.
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This happened to Colleen:

Diagnosed in September 2007
ER-/PR-/HER2 Neu+++ 2.1 cm x .9 cm spicluted tumor with three fingers, Stage 2B
Sentinal node biopsy and lymph node removal with 3/18 positive in October 2007
4 TAC infusions
lumpectomy March 2008, bad margins
Re-excision on June 3rd, 2008 with clean margins
Fitted for compression sleeve July 16, 2008
Started the first of two TCH infusions August 14, 2008
Done with chemo and now a member of the blue dot club 9/17/08
Starting radiation October 1, 2008
life is still on hold
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