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Old 02-18-2009, 11:40 AM   #21
hutchibk
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I would disagree vehemently with something that has been repeated a few times: Comparative-effectiveness research IS something for patients to consider seriously as we move forward, all should research deeply and learn about it, and be very afraid of as it is uncharted territory in our country.
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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 02-18-2009, 12:26 PM   #22
gdpawel
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Fear and Loathing over the Stimulus Bill

Some people think comparative effectiveness research is a bad omen. There are those that think not.

http://www.thehealthcareblog.com/the...ulus-bill.html
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Old 02-18-2009, 12:33 PM   #23
Yorkiegirl
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Thanks for this statement again:

I guess not very many of us are concerned about Joe reminding us that we should be careful about political issues because we are a 501C non profit organization. I for one do not care to jeopardize this forum by addressing these isuues here instead of directly with our representatives in Washington.>>>>


I know I am concerned as this is 501C group and do not wish any thing to happen. I guess some don't understand.
We also have to realize we never know who may reading here.
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Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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Old 02-18-2009, 01:26 PM   #24
Rich66
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If things go te hroute of comparative effectiveness and studies/data from other countries are available, I hope this info is used and not duplicated here. Take any savings and pour it into accelerating research towards a cure for all cancers.
BTW, there is a huge variability in systems regarding IT. About a year ago, my dad was in the ER of a smaller hospital where his primary care doctor has an office. His records were not available because it was after hours and no one could get into the office. I kid you not.
Further, when I asked them to contact his infectious disease specialist directly, the ER doc said he couldn't. I stewed about that for a while and then, for the hell of it, asked if I could make the call. They got me a phone book, I called the specialist and handed the phone to the ER doc. Ah...the efficiencies of protocol.
One of the biggest healthcare IT entities, aptly named EPIC, is located near Madison, WI where I live.
Not that IT makes things seamless. I've been literally living in the hospital where my Dad is for about a month. I had to ask a CNA, RN and MD before I could find out when the last bowel movement was. Now...wouldn't you think a computer program could alert docs that 5 days had passed? Maybe that capability is available as an upgrade (past poop plug-in?).
Oh..I have lots of ideas for healthcare products. I'm gonna cash in big on the upcoming transformation.
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Old 02-18-2009, 01:29 PM   #25
gdpawel
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What the Stimulus Plan Means for Cancer Survivors

According to David Lofye at the Lance Armstrong Foundation, the economic stimulus package that was signed into law, the American Recovery and Reinvestment Act of 2009 included a number of items of interest to the Lance Armstrong Foundation:

$10 billion to the National Institutes of Health (NIH) for biomedical research (including at least $1.2 billion for cancer research).

$1 billion to the Centers for Disease Control and Prevention (CDC) for prevention and wellness programs including cancer screening and education programs.

65% federal subsidy for COBRA health insurance premiums for up to nine months for workers who lose their jobs from September 1, 2008 through December 31, 2009.

$87 billion to help states restore recent service cuts to Medicaid programs.

$19 billion for a national health information technology system to support electronic medical records in hopes of lowering medical costs and improving quality of care.

The Foundation advocated in support of many of these provisions and believes that these investments have the potential to improve the lives of people affected by cancer.

The Foundation will continue to engage Congress and the new Administration to ensure that these funds are spent in a manner that will have the greatest possible impact.
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Old 02-19-2009, 11:17 AM   #26
Carolyns
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Hi All -

I think that this is an extremely important topic that should not be political in any way. Just the facts. Brenda mentions "comparative effectiveness" and I want to understand more about the pro's and con's of this and other potential changes.

As a 53 year old - 3 time BC warrior fighting for 20 years (so far)- I am presently Stage IV - I don't want to be lost in the fine print (not saying that I am but ...). My life is good even though it is a constant roller coaster ride.

Every action has unintended consequences of which many could be prevented if they are surfaced in advance and better understood. Here are some of my questions: Is there is some kind of cost benefit ratio that is equated to a survival time? If so then does that mean that my (really expensive chemo) may be too expensive to justify usage just to gain a few months (at a time)? Does it mean that I may not be able to benefit from the "off label" treatments and expensive chemo that will not cure me (although I always secretly hope and pray that it will). Each treatment has lasted about 4 months and it is very expensive - but those 4 month periods have added up to 3 years so far. Could it mean that there would be a limited number of treatments offered once you are considered metastatic? What about compassionate use of trial medicines for patients who have exhausted conventional therapy but due to being heavily treated are ineligible for promising trial drugs? Are there any changes being looked at to address this issue? These are some of the issues of concern to me.

I know that we have many brilliant minds on this board and this topic does not need to be political. Please try to look beyond political beliefs or the appearance of political slant in addressing this issue if anyone is doing that.

Love, Hope, Peace - Carolyn
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