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08-04-2008, 12:31 PM
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#1
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Senior Member
Join Date: Jul 2008
Location: Murfreesboro, Tennessee
Posts: 48
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stand up 2 cancer videos
I have just been checking out the standup2cancer.org website and watched the video of Dr. John Glasby on treating the whole patient. It is cheering to hear him say this thing will be defeated in his lifetime. To watch go to standup2cancer.org/sutv and click on channel "the lab".
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Dx June 2008, Age 44
Mother Dx age 54, deceased
1.2 cm tumor right breast, grade 3, ER 4+; PR 3+
HER2 +, invasive ductal carcinoma
Quadrantectomy right on 7/30/08
Path report, all 3 nodes taken were clear!!!!!!
Lymphatic/vascular invasion and sent out BRCA testing
Port in on 9/2/08. Chemo began 9/3/08. TCH (MUGA wrong - echocardiogram says 65% cardiac MRI 59% 9/10/98 elevated liver enzymes, PET scan 9/16/08 all clear.
TC ended 12/17/08
Port blood clot and hosp. 1/2/09
radiation begins 1/8/09
BRCA testing done - results NEGATIVE!
cardiologist said go back to coreg as it helps counteract heart effects of herceptin and slowly increase dosage - now 40mg daily.
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08-04-2008, 01:21 PM
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#2
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Senior Member
Join Date: Apr 2008
Posts: 28
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thanks Rebecca... while you heal, and it does get better, you might enjoy checking out a website I found and bought many many scarves that have not only been very soft but get lots of compliments.. and it is nice when you feel like such an alien.. the person is really nice too... I buy the rectangle 30" and fold them in half...pretty paisleys... www.anohkiusa.com is the place...my head was way too sore for a wig...
I have no profit motive or anything with these.. there were just none to be found where I live. good luck.. westswon |
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08-04-2008, 01:31 PM
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#3
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Senior Member
Join Date: Jul 2008
Location: Murfreesboro, Tennessee
Posts: 48
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Thanks - I will check this out - got the ACS catalog of hats in mail prior to surgery and all I could think of was "Aunt Bea lives". I have been on search for scarves but all I have found around the malls were the "pashmina" wraps.
__________________
Dx June 2008, Age 44
Mother Dx age 54, deceased
1.2 cm tumor right breast, grade 3, ER 4+; PR 3+
HER2 +, invasive ductal carcinoma
Quadrantectomy right on 7/30/08
Path report, all 3 nodes taken were clear!!!!!!
Lymphatic/vascular invasion and sent out BRCA testing
Port in on 9/2/08. Chemo began 9/3/08. TCH (MUGA wrong - echocardiogram says 65% cardiac MRI 59% 9/10/98 elevated liver enzymes, PET scan 9/16/08 all clear.
TC ended 12/17/08
Port blood clot and hosp. 1/2/09
radiation begins 1/8/09
BRCA testing done - results NEGATIVE!
cardiologist said go back to coreg as it helps counteract heart effects of herceptin and slowly increase dosage - now 40mg daily.
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08-04-2008, 01:34 PM
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#4
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Senior Member
Join Date: Apr 2008
Posts: 28
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Hi again.. no these are gorgeous handkerchief cotton.. I tie it on the side of my head in a sort of bow. The woman is so nice, I have even exchanged a few for color.. I think I have bought two dozen and it is all that I wear...you are right: there is nothing in the stores and I refuse to look like Aunt Bea...
When you look at them, be sure to open any that you like because you will see that they each have a lovely border around them...good luck... let me know if you like them.. westswon
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08-04-2008, 07:06 PM
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#5
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Senior Member
Join Date: Apr 2006
Location: Boston
Posts: 66
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A slight typo in website address: it's Anokhiusa.com, not Anohki... the scarves are beautiful, and many come in two sizes: square @ 30"x30", and rectangular @ 15"x72". Thank you for posting this, westswon!
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Emmay - My sister's history:
6/03 Her2+,ER-PR-Breast Cancer, IIb, 7/03 lumpec. rt.brst
9/03 Begin chemo-AC+T
2/04 Mastectomy for local recurrence
3/04 Begin Herceptin, 5/04 Rad to mastec.site
9/04 Recurring Headaches=brain mets
10/04 Craniotomy #1 - rem. 3 br. mets, 11/04 WBR
2/05 Begin Lapatinib(Tykerb) Clinical Trial
5/05 Craniotomy #2 - remove largest brain mets
7/05 Stereotactic Radiation to 2-3 brain mets
10/05 - 3/07 CyberKnife Radiation Treatments for sm brain mets as they arose. Cont. Herceptin
5/07 Begin Temodar+Sorafenib for brain mets
2/08 Begin Tykerb(Lapatinib)+Xeloda for br. mets
5/08 MRI&Biopsy shows ext.new disease, some necrosis
5/08 Begin CPT-11(Irinotecan)+Avastin for br.mets
6/08-4/09 MRIs look great! cont. Herceptin
3/09 Stop CPT-11, brain CTclear-some nausea,backpain
4/09 Scans=pleura,liver,bone mets.
New Rx Herceptin+Avastin+Xeloda
6/09 new Rx Carboplatin+Herceptin
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08-05-2008, 08:40 PM
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#6
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Senior Member
Join Date: Jun 2008
Location: NY
Posts: 81
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rebecca i hope your recovery is going well! ur gonna get through it!
westwon: the scarves really caught my eye. my mom was just talking about how wigs are uncomfortably hot and itchy in the summer.
do you recommend the square or the rectangle? also what patterns did you like?
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08-06-2008, 05:29 AM
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#7
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Senior Member
Join Date: Apr 2008
Posts: 28
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scarves/loveher
Hi there. I have so many of them that it is hard to tell you which ones are best. I get compliments on them all the time which, when you are bald, feels pretty good.
I would suggest looking at the wardrobe, seeing what colors predominate and buying a couple scarves in colors that are close. It is funny that I now get dressed by what scarf I will wear and what matches it.
They are sooooooooooo soft, especially after one washing... I love the pink and green one; the purple and green one; the teel and blue... I only buy 30 inch squares, fold them in half, tie in back--once, then turn the knot to the side of my ear--finish it as a bow and pouf out the loops... ahhh, the ultimate gypsy look... westswon
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08-06-2008, 11:36 AM
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#8
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Senior Member
Join Date: Jul 2008
Location: Murfreesboro, Tennessee
Posts: 48
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I found the website despite the typo and ordered 4 to try - great pricing at $14.00 per. They look so bright and cheerful as well as the added comfort and washability of cotton - can't wait until they arrive.
__________________
Dx June 2008, Age 44
Mother Dx age 54, deceased
1.2 cm tumor right breast, grade 3, ER 4+; PR 3+
HER2 +, invasive ductal carcinoma
Quadrantectomy right on 7/30/08
Path report, all 3 nodes taken were clear!!!!!!
Lymphatic/vascular invasion and sent out BRCA testing
Port in on 9/2/08. Chemo began 9/3/08. TCH (MUGA wrong - echocardiogram says 65% cardiac MRI 59% 9/10/98 elevated liver enzymes, PET scan 9/16/08 all clear.
TC ended 12/17/08
Port blood clot and hosp. 1/2/09
radiation begins 1/8/09
BRCA testing done - results NEGATIVE!
cardiologist said go back to coreg as it helps counteract heart effects of herceptin and slowly increase dosage - now 40mg daily.
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08-06-2008, 12:27 PM
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#9
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Senior Member
Join Date: Apr 2008
Posts: 28
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scarves
Hi again Rebecca... I hope you like them as much as I do. When they come, they will smell like madras used..I wore them anyway..then washed them...you have to cut the tag off because of our babuska wrap manuveur--on the side.
Anyway, silk scarves will not stay on my head so bless this woman. She started the website after working with cancer patients at a Boston hospital...
If you find that they do the trick, do you think we should ask the folks on this site if they would want to tell others about them? Having bought just about all the hats on the Amer Cancer site and a wig that was very expensive(hot and itchy)--these have really saved me. I have to dress professionally and they are fine with pantsuits. westswon
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