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05-27-2008, 09:33 AM
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#1
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Senior Member
Join Date: May 2008
Posts: 62
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Miracles happen! No residual signs of metastatic disease!
Dear all,
Got good news Friday, PET of brain is clean. MRI of body shows nothing else!
Anyone else clear after initial mastec, axiallary pos, two years out and one WBRT treated brain met?
What treatment? Any preventative treatment if you are clean after a met?
Carla
Dx July 2006 right breast Age 52
Found by self, always cystic, did not resolve after two rip roaring heavy peri-menopausal periods, 4-06, 5-06 after no periods for 4 mos
Invasive ductal grade III, high grade 3.2 cm ultrasound bx, pos lymph
PR- ER- Her2Neu+ grade 3, IHC3+, FISH 4.3
Mastectomy Aug 2006,
Axillary node dissection 3 of 9 lymph pos, invasive to fatty tissue
Radiation mastectomy site+ 30tx, 9-06 38 Gy?
4 cycles AC 3 wks apart start 9-11-06
4 cycles Paclitaxel 3 wks apart finish 2-11-07
Herceptin start during tax, 52 weekly doses total 12-4-06 start finish 11-27-07
MUGAs normal, but not one single CAT or MRI at any time during dx or tx
Hemmorohoidectomy, ER 4-07, no relief, anal fissure surgery 5-07
Mammo 7-2007 on left suspicious, 6 films over two weeks
Stereo bx, finally cleared weeks later, micro Ca
One yr follow-up 4-2008, missed due to ER visit, ha!
4-9-08 found wandering halls at work
Lots of weird stuff a month or so, blamed gabapentin for periph neuropathy, and stress started a month or so before brain symptoms
ER 4-9-08, admitted ICU
One week ICU massive steroids
Tumor on surface of right parietal, frontal lobe, 1cm? tumor, 4x5x6 cyst
Her2Neu+, IHC>3, FISH 10 yikes
Neurosurgeon got tumor 4-14-08! Little scraping, slight left ataxia left only!
Started WBRT on 4-28-08, 10tx of 3Gy for total of 30
PET 5-19 clean!, MRI 5-28 clean!, Neurosurg follow-up 5-28
Then wait and see, meet with Oncologist 5-30 to “See if I responded to radiation"
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05-27-2008, 10:19 AM
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#2
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Senior Member
Join Date: Jan 2008
Location: Oregon City
Posts: 856
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Carla:
Congratulations on the all-clear. I'm not sure about medical prevention, there are a lot of real smart women on this site who will help you with that, but I sure will say prayers for you to keep you clear of cancer.
Lee
__________________
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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05-27-2008, 10:35 AM
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#3
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Senior Member
Join Date: Feb 2006
Location: Watkinsville, Georgia
Posts: 356
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YEAH!
Congratulations...I don't have experience with this but it is wonderful news to share!
Hugs ~ Ruth
__________________
[/SIGPIC]~~~~~~~~~~~~~~~~~~~~~~~~~~~
Diagnosed 6/03 nursing daughter
Dose dense A/C 4x
Modified rad mast 8/03
IDC; 3 cm; 10+/16 nodes; ER/PR-; Her2+++
Weekly taxol w/Herceptin (off label) 12x's
40 weeks Herceptin
Radiation 33x
Reconstruction w/ implants 05 & 07
NED
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05-27-2008, 10:53 AM
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#4
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Such terrific news!! Thank you for sharing. I am so happy that you are doing well. Prayers for continued good health!
Hugs and Prayers,
Lexi
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05-27-2008, 01:00 PM
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#5
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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yeah Carla - good going girl. Watch the research on whether Tykerb helps protect the brain from future brain mets... I think Dr. Eric Winer @ Dana Farber in Boston is testing that.
__________________
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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05-27-2008, 01:19 PM
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#6
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Great, simply great I am really happy for you!
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
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05-27-2008, 03:31 PM
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#7
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Senior Member
Join Date: May 2008
Posts: 62
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Hey Bren Hutch,
I've been reading everything. Cannot wait to see when the phase II (49 women) of the Tykerb-Xeloda is finally made official at ASCO this weekend.
Are they Stage IIIing? At Dana Farber? Maybe they will finally FDA approve Tykerb for Her2 brain mets? Do you have a link?
I wish I could find a study to just do Tykerb and Herceptin.
But gotta fail too much for that to happen.
How are you????
Carla
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05-27-2008, 03:36 PM
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#8
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Senior Member
Join Date: May 2006
Posts: 3,142
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Miracles happen !!
Hi,
A very big congratulations to you !! Job well done !!
Maybe your doc can refer you to someone who can help you with preventive treatment. In the meantime take very good care of yourself. You also deserve a little celebration.
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05-27-2008, 04:10 PM
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#9
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Senior Member
Join Date: Jun 2007
Location: moved to Lancaster, Pa in June, 2010
Posts: 576
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Great news Carla. Go out and celebrate. Buy something really outrageous!
__________________
Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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05-27-2008, 06:01 PM
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#10
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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That's is wonderful news. Thanking God for your miracle.
Tonya
__________________
DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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05-27-2008, 06:05 PM
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#11
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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How wonderful for you. You must be giddy with joy!!!
Sending up prayers of thanks.................
MJ
__________________
"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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05-27-2008, 07:33 PM
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#12
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Carla,
Congratultions - loved hearing your wonderful news.
Yes, Miracles do happen and I am glad one has happened for you.
Big Happy Hugs,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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05-27-2008, 07:37 PM
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#13
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Carla,
What wonderful news! I am so happy for you.
karen z
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05-27-2008, 08:24 PM
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#14
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Oh, Glory be to God, Carla! Our prayers have been answered once again.
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05-27-2008, 08:41 PM
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#15
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Carla,
Congratulations on your diagnosis. Whatevery you're doing, keep on doing it!
Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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05-28-2008, 09:50 AM
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#16
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Senior Member
Join Date: May 2008
Posts: 62
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Thank you all for celebrating for me. Saw the Neurosurgeon today. Showed me the MRI. He is thinking some cyberknife to really kill the evidence. Here goes. But after all this, seems like just the thing to REALLY stop worrying.
I'm going to the garden store and buying my plants. (I'm a hard core gardener , but my garden is a mess from the last few years.) Normally I have that all done by now. But now I can dig! I can rake! I can drive! Yahoo! And decrease the stupid steroids!!!!
Carla
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05-30-2008, 12:00 AM
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#17
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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RIGHT ON CARLA!!! Fantastic news!!!
Your gardening sounds like the perfect plan....cultivate, plant, and grow your nice beautiful garden....enjoy...
__________________
*** 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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05-30-2008, 07:36 AM
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#18
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Senior Member
Join Date: Mar 2008
Posts: 141
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Carla-
congratulations...wonderful news...love to hear it..puts a smile on my face just before the weekend too ;+)
Yes, plant that garden, we just started ours last week. Eating from your garden is the healthiest way to go.
Take care,
Liz
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05-30-2008, 01:59 PM
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#19
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Senior Member
Join Date: May 2008
Posts: 62
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Rant, rant, rant
Thank you all.
Going for a consult Monday at University Hospital in Denver to get a second opinion about Cyberknifing the area, too, mentioned by the Neurosugeon who took out the tumor. Hopefully NOT.
Saw my Oncologist today. Reamed me out for not just taking the good news and just enjoying my boys "in this time period while I'll be in the best shape (before I crash)". Dislikes that I research the disease so much. Says it is my way of denying that I have a bad cancer. Says I'm depressed. Yo, get that. No hair, dilantin reaction that can be fatal. All care described as palliative. Depressed? Who, me? Days in and out of ICU. Bald as Bozo again. Sweating in wigs and compression sleeves. I should be happy as a pig in slop, right????
Tried to explain to her my research is what I have done all my life as a biologist. Researched melanoma, researched bean fungus, researched calcium in spit, researched catecholamine receptors, researched pee in gallon jugs (record 12 gal from one patient that had to be combined to test one teaspoon ((5 ml to you science types)), researched my Doctor best friend's genetic link to abnormal clotting, even researched my husband's clone for a gene he studies in frogs. It is WHAT I DO. Figure I'm entitled to research my own disease.
Told her my research made it quite clear even to stupid me that there was no point in doing any chemo, etc. right now. To save the arsenal when (not if, I get it) I crash again.
Basically said I was a pain in the butt and took too much of everyone's time and energy. Yeesh, she makes me crazy. My husband was livid afterwards. We ranted all the way home. He said he could not believe the things she said. Couldn't understand why I did not ream her back. She kept my favorite chemo nurse in the room the whole time as "witness". Made my cry once again as I assured her of all the things I AM doing with DH and kids.
Gee, just need a little PEACE.
Gonna make a Strawberry rhubarb pie for a friend who fed us all through the WBRT.
Then wait for shade to plant some more this evening. Purple Wave petunias, lime green Marguerite vines, and a new experiment, Croton, in Colorado no less. Forget the pink.
Thanks for listening. Please don't respond. I just needed to vent.
(By the way, she talked about all their other Her2 patients and how she knew all about trials, drugs etc., but never heard of this site.)
Carla
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05-30-2008, 02:23 PM
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#20
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Is it not time to find a different oncologist?
__________________
*** 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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