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11-04-2012, 09:16 PM
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#181
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Senior Member
Join Date: Apr 2009
Location: La Quinta, Ca
Posts: 253
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Re: Prayers needed for Sheila
Lani,
Can any oncologist administer this drug off label or does it have to under a clinical trial? My current experience with the T-DM1 trial shows me clinical trials are not set up to make it easy for the patient. Thank you for the discussion about assisted suicide--very emotional piece.
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11-04-2012, 11:07 PM
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#182
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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Re: Prayers needed for Sheila
As I understand it, any drug approved by the FDA for one purpose can be prescribed by any licensed Dr, At least one whose federal prescribing licensure allows him to prescribe, that drug for any other purpose "off-label"
That does not force insurance companies to pay for the drug, however.
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11-06-2012, 01:58 PM
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#183
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Prayers needed for Sheila
I am still keeping my fingers crossed for Sheila and hoping she will get the help she needs soon.
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11-06-2012, 02:56 PM
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#184
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Senior Member
Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
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Re: Prayers needed for Sheila
Jen, I cancelled my request to be added to the group. I'm guessing that the admin prefers to add only those she knows. Her personal page does not offer any way to contact her, and there's no way to send a personal message from the page she has set up for your mom.
I will continue to hope that your mom's platelets multiply like bunnies and that she is comfortable. I also hope that you will keep us posted about how she is doing.
Rhonda
__________________
2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy
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11-06-2012, 11:58 PM
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#185
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: Prayers needed for Sheila
Lani, Outstanding! I am in awe! What an amazing life you are living. I believe in every word you have written. Your wealth of knowledge here and on Life, such powerful stuff. I have seen these situations played out in life, and I have been blown away.
When a mother in her early sixties son can not watch her with her cancer and gives up on her and she is fighting so hard. She is unable to speak but has the ability to write and she surrenders because she knows her son is uncomfortable with her situation and is (as he says) unable to visit her any longer. She went so quickly. To take our God given right to fight and hope for as long as We see fit. Then have someone make it theirs. I just don't get it.
Gods blessings to you Lani. Thank you so much for your truely heart felt message.
You are so appreciated for all you do and all your are! Priceless.
Peace my friend,
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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11-07-2012, 08:14 AM
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#186
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Senior Member
Join Date: May 2007
Posts: 236
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Re: Prayers needed for Sheila
Rhondalea I sent you a message and added you on my Facebook.
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11-07-2012, 09:01 AM
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#187
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Senior Member
Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
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Re: Prayers needed for Sheila
Added back and replied to your message. (I love your timeline.) Thank you so much.
__________________
2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy
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11-07-2012, 01:39 PM
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#188
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Senior Member
Join Date: May 2007
Posts: 236
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Re: Prayers needed for Sheila
You are very welcome Rhonda please feel free to share my posts and pics on my FB timeline. It's always great to be in the company of like minded individuals.  |
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11-27-2012, 07:11 AM
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#189
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Senior Member
Join Date: May 2007
Posts: 236
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Re: Prayers needed for Sheila
Today Mom wants all of her children to help her plan her funeral mass. I am very sad to have to report I don't think it will be long until Sheila earns her wings and can fly forever NED....
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11-27-2012, 07:26 AM
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#190
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: Prayers needed for Sheila
Jen, I am sending prayers and love from Canada.
Your dear mother Sheila has been a shining inspiration to me since I joined this site...
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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11-27-2012, 08:02 AM
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#191
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Prayers needed for Sheila
Please tell Sheila I love her again
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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11-27-2012, 08:31 AM
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#192
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Senior Member
Join Date: Oct 2005
Posts: 215
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Re: Prayers needed for Sheila
So many passing too soon. Shiela was an inspiration to many of us. Many God hold you in the palm of his hand, Blessings , jeanette
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11-27-2012, 09:55 AM
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#193
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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Re: Prayers needed for Sheila
"Today Mom wants all of her children to help her plan her funeral mass. I am very sad to have to report I don't think it will be long until Sheila earns her wings and can fly forever NED...."
Oh gosh, Jen. I cannot imagine the strength it must take to go through this with your mom.
As Elenor Roosevelt said, We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face...we must do that which we think we cannot.
That sums up everything about the cancer experience for ME, both sides.
Sending you strength and prayers. And love to Sheila.
__________________
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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11-27-2012, 10:20 AM
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#194
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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Re: Prayers needed for Sheila
Sending strength and love for Sheila and her loved ones . May her days be filled with love.
Please tell Sheila I too hold her in my heart.
Marcia
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11-27-2012, 11:28 AM
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#195
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Senior Member
Join Date: Mar 2010
Location: Thornhill Ontario
Canada
Posts: 266
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Re: Prayers needed for Sheila
Jen love and peace to your Mom
__________________
August 2008
Lumpectomy left breast
1 tumour 0.9 cm
Her2 negative
lymph nodes negative
venous/lymphatic invasion absent
ER+PR-
Stage I Grade 2
Radiation and Femara
November 2008
Lumpectomy right breast
2 tumours .03 cm and .05 cm and extensive DCIS
.05 tumour Her2+
lymph node negative
venous/lymphatic invasion "indeterminate"
ER+PR low postive
Stage 1 Grade 2
January 2009
bilateral mastectomy
chemotherapy taxotere
Herceptin one year
Femara
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11-27-2012, 01:23 PM
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#196
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Senior Member
Join Date: May 2007
Posts: 236
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Re: Prayers needed for Sheila
I will bring all your love and prayers from the "HER2 Family" to my Mom when I see her today.
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11-27-2012, 02:14 PM
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#197
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Member
Join Date: Nov 2012
Posts: 19
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Re: Prayers needed for Sheila
Thank you so very much. God bless you.
__________________
[SIGPIC]
12/1/11 found lump in right breast
12/4/11 needle biopsy
12/14/11 core biopsy
came back positive for HER2 +, grade 3
1/4/12 lumpectomy, no metric stats at hand; lump was > 2 inches, + borders. 19 nodes removed, 17 positive
staph infection 2X
second opinion, www.carolinabreast.com.
March 12th - Adriamycin & Cytoxan every three weeks 4 cycles.
July 2 through October 8th - taxol and Herceptin every week with two cycles every other week.
October 22nd - 50 mgs. Benedryl & 600 mgs. Herceptin, was going to be every three weeks, but 600 mgs kicked my butt so now I get 200 mgs every week, through August 2013.
November 16, 2012, succesful simple bilateral mastectomy
December 26, 2012, began radiation. Side effects there, too. Sheesh. :-)
February 1, 2013, radiation ended.
August 1, 2013, last day of Herceptin
September 6, 2013, CT, found 2 cysts in lower abdomen. Nuclear bone scan clear!
September 13, 2013, sonogram checking those cysts -
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11-27-2012, 03:02 PM
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#198
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Re: Prayers needed for Sheila
Love and prayers to each of you.
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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11-27-2012, 03:06 PM
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#199
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Senior Member
Join Date: Jul 2011
Posts: 954
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Re: Prayers needed for Sheila
How we wish this wasn't happening to Sheila.
Thanks for passing on our love to your Mom, Jen.
(((Hugs)))),
Paula
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11-27-2012, 03:12 PM
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#200
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Member
Join Date: Nov 2012
Posts: 19
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Re: Prayers needed for Sheila
Sheila is in all of my prayers. I am still hoping for a turnaround.
__________________
[SIGPIC]
12/1/11 found lump in right breast
12/4/11 needle biopsy
12/14/11 core biopsy
came back positive for HER2 +, grade 3
1/4/12 lumpectomy, no metric stats at hand; lump was > 2 inches, + borders. 19 nodes removed, 17 positive
staph infection 2X
second opinion, www.carolinabreast.com.
March 12th - Adriamycin & Cytoxan every three weeks 4 cycles.
July 2 through October 8th - taxol and Herceptin every week with two cycles every other week.
October 22nd - 50 mgs. Benedryl & 600 mgs. Herceptin, was going to be every three weeks, but 600 mgs kicked my butt so now I get 200 mgs every week, through August 2013.
November 16, 2012, succesful simple bilateral mastectomy
December 26, 2012, began radiation. Side effects there, too. Sheesh. :-)
February 1, 2013, radiation ended.
August 1, 2013, last day of Herceptin
September 6, 2013, CT, found 2 cysts in lower abdomen. Nuclear bone scan clear!
September 13, 2013, sonogram checking those cysts -
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