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08-07-2007, 02:09 PM
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#1
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Consult scheduled re brain mets
I got a call this morning from my radiation onocologist and have an appointment to see him tomorrow at 2:00pm. It's just the consult to discuss the CyberKnife procedure and all the other wonderful things that go along with it.
I feel fortunate to have such a great team of doctors. At least I don't have to wait around for days waiting and worrying. They are moving ahead quickly. I've been doing some reading on the CyberKnife and I think it will work for me. I'm so lucky that there is only one met and that it is only 5mm. I don't know the metric system so I guess I'm going to have to learn it.
If anyone has had CyberKnife, I'd like to know how you tolerated the procedure and also what side effects you experienced.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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08-07-2007, 05:45 PM
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#2
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Senior Member
Join Date: Dec 2006
Location: Massillon, Ohio
Posts: 247
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Kate, I don't have much to say or comment about Cyberknife. One thing I can say is that you seem so strong, your courage is inspiring. I am sure you will take to this procedure very well and will do great. I am thinking about you all the time. Work is keeping me away from blogging a lot, but I do keep up on your posts.
__________________
Laurie
Diagonsed 8/10/06 (found own lump)at 35
Her 2 +++, er-/pr-
4 A/C 8-29-06 to 11-06
Lumpectomy, node dissection- 11/30/06
Pathology report stage IIIC
1 tumor 3 cm
10 of 15 nodes +
12 Taxol 12/18/06-03/06/07
Herceptin 12/18/06- 12/11/2007 done!!! yeah!!!
33 rads started 3/22/07, done!! yeah!! 5/07/07
Lymphedema diagonsed 2/1/07
BRCA1/BRCA2 negative
port out 1/10/08
pregnant after 6 yeas of trying- due mid feb.
Ryder David Kessel Hunter born feb.6th 2009
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08-07-2007, 08:33 PM
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#3
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Hi Kate; just want to say I'll be thinking of you tomorrow.
Also, have you tried entering cyberknife in the search field? I know several here have had the proceduer and you should be able to search for the posts that way.
Hope you have a good consult tomorrow, and try to get a good night's sleep!
<3 Lolly
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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08-07-2007, 08:37 PM
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#4
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Kate,
I'll be thinking of you tomorrow!
________
Vaporizer Bowl
Last edited by sassy; 08-22-2011 at 09:25 AM..
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08-07-2007, 08:40 PM
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#5
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Senior Member
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
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I don't have any wisdom about the cyberknife, but I just wanted to let you know that am thinking about you and keeping you in my prayers. I agree with the others, I admire your strength and courage. I hope everything goes well at your consult.
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08-07-2007, 10:05 PM
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#6
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Deceased
Join Date: Mar 2006
Location: Virginia
Posts: 113
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Ditto to what everyone else has said and sending you lots of love, hugs, prayers and well wishes Sweetie.
Nicola
__________________
March 18, 2004, Age 36
Diagnosed: High Grade DCIS, Microcalcifications, Solid and Comedo type, Nuclear grade 3 with 1mm margins, ER+, PR+, Stage "0"
3-8-04 Left breast lumpectomy.
4-1-04 thru 6-24-04 Adjuvant XRT.
11-29-05 Gallbladder attack.
12-01-05 Surgery to have gallbladder removed, discovered cancer spread throughout liver in both lobes, HER2+ amplified by FISH and interestingly enough negative for ER and PR.
12-9-05 Clinical trial consisting of Tykerb, Taxol and Herceptin along with Zometa once a month. On clinical trial for 15 months before liver mets started progressing. Started on Navelbine 3-9-07. Navelbine failed, switched to Gemzar July 07. MRI of the brain on July 7, 07. Results revealed multiple brain tumors. Taken off of Gemzar immediately and began 15 rounds of WBR which I completed on July 26, 07. CT scan on 7-26-07 significant progression in the liver mets. I am now getting ready to start on Xeloda along with Herceptin and Zometa once a month.
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08-08-2007, 05:00 AM
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#7
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Senior Member
Join Date: Nov 2005
Location: Hilton Head Island, SC
Posts: 279
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There were a few of us as I remember who did this treatment.. Glad to hear you are in such good hands Kate. Call me if you need to talk anytime! we are proud of you and praying for you - kim
__________________
Kim
Diagnosed 7/05
Stage 3a er+(45%) pr+(68%) Her2+ (40%)
3.8 cm + .8cm multi focal - pleomorphic lobular tumors
high grade DCIS
7/20 nodes
BRCA 2 positive as of 5/07
surgeries: double mastectomy, hysterectomy (LAVH)
A/C,Herceptin for 1 year completed 11/06
femara
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08-08-2007, 09:05 AM
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#8
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Senior Member
Join Date: Apr 2007
Location: Shaker Heights, Ohio
Posts: 86
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Dear Kate,
I grew up with the metric system
5mm = * just about this asteric in 36 font I believe.
I'll double checked at home but it is about as small as we can have/theysee these pesky things! pesky thing be gone now!
Best wishes,
Odette
__________________
May 18, 2006 Age 52,
Diagnosed infiltrating ductal carcinoma
er/pr- HER2 + 3.9 by FISH
June-August 2006 AC chemo
August-October 2006 Taxotere + Herceptin
November 18, 2006 Mastectomy 16 involved lymph nodes
Jan 2, 2007 start radiation
Stage IV, Jan 12, 2007 recurrence in cervical lymph nodes while on Herceptin, stopped Herceptin
Rad oncologist extended the radiation field, good response
Started Tykerb Xeloda on beginning of May 2007
Progression to lungs and conglomerate lymphadenopathy July 2007
Undecided about next treatment
'One does not get to choose one's adventures'
I'm experimenting with my diet, using green tea, flax seed curry and olive oil
Last edited by Odette; 08-08-2007 at 12:18 PM..
Reason: accuracy
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08-08-2007, 12:43 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: Philadelphia
Posts: 301
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Kate-
we're thinking of you...
Regards,
__________________
Shell
init diag 3/17/03-stage IIIC
ER-/PR-/HER2+++
CET x4 neo-adjuvant
lump & SNB 8/03
CET x2
radiation and herceptin/navelbine 11-03-1/04
1st reoccur to lymph nodes 8/04
complete axillary dissection 12/04
herceptin/taxotere til progression (lungs) 3/05
xeloda w/out lapatinib trial 6/05
lapatinib/tykerb added 4/06
ended trial 8/06 due to progression
doxil / avastin 11/06-12/06 - wasn't working
navelbine/herceptin/avastin 12/06/3/07 - progression
gemzar/carboplatin/tykerb 4/07
mri shows extensive mets to bone in pelvic area 6/07
switched to abraxane (3 on/1 off) + tykerb 6/07
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08-08-2007, 06:21 PM
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#10
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Senior Member
Join Date: Dec 2006
Posts: 63
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Keep your chin up.
Kate,
I was away for a few days, but I am sorry to hear about the brain met. But it is luckily just one and v. small. Glad it was caught v. early. Hugs to you and well wishes.
Anne
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08-08-2007, 06:30 PM
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#11
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Kate
Sending you lots of prayers and love....you WILL beat this pesky met....glad there is only one and it is tiny...you are a trooper Kate....we all all with you on this journey!
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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08-08-2007, 06:41 PM
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#12
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Kate,
one crummy met the size of a pencil eraser will crumble to dust with with the cyberknife and your strong will!
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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08-08-2007, 09:54 PM
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#13
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Thank you everyone for your support.
I had my consult today and it went really well. I'm too tired now to give the details as I have chemo tomorrow morning and my butt is really dragging. I will post under a new thread and give all the details when my mind is clear.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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08-09-2007, 07:16 AM
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#14
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Senior Member
Join Date: Mar 2006
Posts: 306
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CyberKnife
Kate,
My experience with CyberKnife was for 6 brain mets, in two sessions, two days apart. All mets were in my cerrebellum. This was my last focalized rads to address the remainder of 14 brain lesions. I'd previously had three Linear Accelerator procedures.
The face mask forming: It is HOT when put on, but just as I thought I couldn't stand it, began to cool to acceptable. Seconds really.
I was on the table for an hour each session...... I had a lot of pain on the back of my head from the amount of time head was in that position. They clamp the mask down TIGHT. I found that purposely pursing my lips, tongue over teeth the second day while getting clamped to table gave me just enough room so I wasn't sore in mouth afterwards. Also had some Ativan that round. Much better, tho' head was sore again.
This was the only time I lost all hair to area radiated, and I believe it was from the area treated: low back of head. All hair grew back in a normal time frame.
All my focalized rads were 100% successful. I had a minimal amount of head pressure, some dizziness that low dose decadron for 7-10 days handled.
Hope this is of some help to you.
pattyz
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08-09-2007, 08:46 AM
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#15
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Hi Kate!
Just thinking of you and praying for you and waiting to hear your news! Sometimes I am overwhelmed by the outrageous courage you exhibit!
Luv and hugs,
mary anne
__________________
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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08-09-2007, 11:30 AM
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#16
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Thanks for the update Kate ... and thanks for the description of the experience, Patty!
__________________
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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08-09-2007, 09:47 PM
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#17
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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Kate, I am thinking of you and praying for you. I am so sorry that you have been hit with this double whammy. You are strong and up beat and have the fighting spirit, you will beat this. Glad they caught the brain met early. I have a brain MRI tomorrow and I am so nervous. The pain management clinic I am going to (for my shingles) is giving me head to toe MRI's. I had the back done today, the brain tomorrow and the upper back and neck done probably saturday. I hate the things we have to go through, just wanted to know I am thinking about you..sherry
__________________
Sherry
Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year
Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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08-09-2007, 10:02 PM
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#18
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Pattyz,
Thanks for your experience with the CyberKnife.
Sherry, I had to have MRI of my entire spine - cervical, thorasic and lumbar -- no mets. It's the waiting that get you anxious. I'm praying that everythig will be ok. When you have the MRIs scheduled you can ask your oncologist for a prescription for Ativan and they will give you just enough pills to get you through the MRIs. I think you get one pill for each test. It really helps to relas you while you're in the tube listenting to the thumping or music through headphones that doesn't really keep out the thumping noise. I'm sure everything will be fine.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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