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10-05-2007, 01:05 AM
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#1
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Member
Join Date: Jun 2007
Location: Staffordshire, England
Posts: 22
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can anyone help?
<TABLE class=tborder id=post136078 cellSpacing=0 cellPadding=6 width="100%" align=center border=0><TBODY><TR vAlign=top><TD class=alt1 id=td_post_136078 style="BORDER-RIGHT: #cc0033 1px solid">Hi
I am 33 years old and i live in England. We seem to be so far behind over here with access to new drugs, i wanted to ask your help as i am feeling so desparate and scared..
I have lung secondaries and i have just had the Tykerb/Xeloda trial stopped as it has failed to work for me.
My oncologist referred me to the top cancer hospital here in the Uk - the Royal Marsden to see if they could suggest any new drugs/trials that may help me as every chemo/hormonal seems to have failed for me so far. the Marsden couldnt help so i am desparate to know if there are other drugs there in the states that i could try to get.
I am willing to pay and travel to the states, does anyone know if this is possible? Where would be the best place to contact over there?
I am so desperate to live.. i dont want to die.. i feel i have too much in life to do, please, please can anyone help me by suggesting anything?
much love to all you fighting this dreadful disease.
Any help would be appreciated
Love
jakki
xxxx
<!-- / message --><!-- sig -->__________________
Jakki
-xx-
DX May 2005 grade 3 IDC - partial mastectomy/immediate LD Recon. 0 /20 lymph nodes affected
Er+PR+HER2-
E-CMF chemo July 05 - Feb 06, 33 x rads. Tamoxifen
June 06 - Regional Reccurrence - supraclavicular lymph nodes, HER2+. Taxotere chemo Aug 06 - Dec 06, 25 x rads, Arimidex, zoladex, Herceptin.
Feb 07 - further supraclavicular progression, re-staging tests.
April 07 - Lung mets DX, oncologist trying to get me on Tykerb & xeloda on LEAP trial.
June 07 - Lung mets doubled in size, 3 new tumours and one in my back - commenced Tykerb/Xeloda - Zoladex & Arimidex stopped.
September 07 - Tykerb/Xeloda failed - waiting for the next option.. very very scared..
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__________________
Jakki
-xx-
DX May 2005 grade 3 IDC - partial mastectomy/immediate LD Recon. 0 /20 lymph nodes affected
Er+PR+HER2-
E-CMF chemo July 05 - Feb 06, 33 x rads. Tamoxifen
June 06 - Regional Reccurrence - supraclavicular lymph nodes, HER2+. Taxotere chemo Aug 06 - Dec 06, 25 x rads, Arimidex, zoladex, Herceptin.
Feb 07 - further supraclavicular progression, re-staging tests.
April 07 - Lung mets DX, oncologist trying to get me on Tykerb & xeloda on LEAP trial.
June 07 - Lung mets doubled in size, 3 new tumours and one in my back - commenced Tykerb/Xeloda - Zoladex & Arimidex stopped.
September 07 - Tykerb/Xeloda failed.. lung mets still growing and more new ones
October 2007 - Commenced Vinorelbine and back on Herceptin again..
March 2008 - New Scans reveal lung mets still progressing, now have 3cm Liver Met and Bone Met to Sternum - looking for a new clinical trial...
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10-05-2007, 03:35 AM
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#2
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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You have not tried one of the most powerful drugs against metastatic disease (especially in combination with Herceptin). You have not tried a taxane - different names include Taxol, Taxotere or Abraxane (unless you forgot about them). You also have not tried Navelbine or Gemzar. Ask your oncologist today!!
Otherwise, there is Sloane Kettering in NYC or Dana Farber in Boston or Fox Chase (Dr. Lori Goldberg) in Philadelphia.
Do not give up as there are more chemos out there and they are better drugs than what you have been on. Taxotere, Carboplatin plus Herceptin is a GREAT Combo.
Keep asking questions there and here and if willing, come to the USA.
__________________
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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10-05-2007, 03:59 AM
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#3
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Senior Member
Join Date: Sep 2005
Posts: 414
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Hi Daisy
You might try talking to Cancer Baccup to see if they have any advice on getting cancer drugs on what is called a named patient basis. After hearing that the saintly Jane Tomlinson couldn't get Tykerb I was disgusted enough to do some checking and it seems like Tykerb has not yet received its EMEA licence yet and since new drug introduction is very slow and methodical in Britain, NICE as of July hadn't even set a time to begin the evaluation process. But I once met a cancer patient who had Iressa on a named patient basis and Iressa never received EMEA approval, so this might be a possibility [The patient was a non-smoking lung cancer patient and I think that Iressa had problems because of side effects and because the retrospective results showed that only never smokers and perhaps Asians benefitted and the trial wasn't set up right to deal with this]. The EMEA received the tykerb application nearly a year ago, so it should get its thumb out.
This whole issue is likely to heat up now that the Tomlinson family is raising the issue.
I know that some oncologists are using carboplatin for mets, but HCT isn't used much because the regime wasn't licenced (this is one of the big differences with the US, where drugs are licenced but can be much more freely used in different combinations afterwards).
Best of luck,
Christine
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10-05-2007, 04:19 AM
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#4
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Jakki
I am having great response with Herceptin, Taxol and Avastin for the supraclavicular nodes....I also have a friend who is on Navelbine and Herceptin for the same....like Becky said, I would try a taxane....and maybe add Avastin to the mix which is a new monoclonal antibody that blocks blood supply to the tumor.
Sending you prayers across the big pond.
__________________
"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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10-05-2007, 07:00 AM
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#5
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Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
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taxotere
Jakki did have taxotere. Did you guys mean she should try it again???
__________________
PinkGirl
Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++
Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09
" I yam what I yam." - Popeye
My Photo Album
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10-05-2007, 07:28 AM
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#6
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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I did see that later. She could try Taxol with or without Navelbine and in combo with Herceptin. It didn't seem like she took the Taxotere with Herceptin but rather had them sequentially versus concurrently (concurrent is better)
__________________
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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10-05-2007, 10:32 AM
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#7
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Man this stuff is all happening so fast, I can't keep up with all of the new "-nib's" and "-mab's"!! I wish I could give all of the researchers a big hug!
__________________
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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10-05-2007, 11:35 AM
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#8
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Senior Member
Join Date: Sep 2005
Posts: 414
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I sincerely apologise. I didn't get enough sleep, which was my own stupide fault, and completely misread message.
First ask about some combos you haven't had. Herceptin + navelbine has definitely been used by other NHS oncologists and it couldn't hurt to ask. There are some phase I trials for which you might qualify in the UK, but I didn't see anything with pertuzumab. See http://www.clinicaltrials.gov and enter united kingdom in the search engine. |
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10-07-2007, 01:46 PM
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#9
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Member
Join Date: Jun 2007
Location: Staffordshire, England
Posts: 22
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wow! Thanks to all you ladies out there who responded.. its pretty late over here in the Uk and i'm really tired but first thing tomorrow i am going to print all this very use ful info out and google it.. i also have an oncology appt late afternoon so i willl be going armed with all your replies wanting some answers..
Much love to all you ladies..
Jakki
xxx
__________________
Jakki
-xx-
DX May 2005 grade 3 IDC - partial mastectomy/immediate LD Recon. 0 /20 lymph nodes affected
Er+PR+HER2-
E-CMF chemo July 05 - Feb 06, 33 x rads. Tamoxifen
June 06 - Regional Reccurrence - supraclavicular lymph nodes, HER2+. Taxotere chemo Aug 06 - Dec 06, 25 x rads, Arimidex, zoladex, Herceptin.
Feb 07 - further supraclavicular progression, re-staging tests.
April 07 - Lung mets DX, oncologist trying to get me on Tykerb & xeloda on LEAP trial.
June 07 - Lung mets doubled in size, 3 new tumours and one in my back - commenced Tykerb/Xeloda - Zoladex & Arimidex stopped.
September 07 - Tykerb/Xeloda failed.. lung mets still growing and more new ones
October 2007 - Commenced Vinorelbine and back on Herceptin again..
March 2008 - New Scans reveal lung mets still progressing, now have 3cm Liver Met and Bone Met to Sternum - looking for a new clinical trial...
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10-07-2007, 05:54 PM
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#10
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Senior Member
Join Date: Mar 2007
Location: Greendale, WI
just outside Milwaukee
Posts: 211
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Lani
Did you notice that Jakki is HER2 Neg?
__________________
04/05 Onset 49, DCIS, solid, Hist 2/3, Nucl 2/3, 7cm R Brst
04/05 E & P + HER2+++
05/05 Mediport
05/05 Cytoxan & Adriamycin every 3wk x4
08/05 Taxol every 2wk x 4, Herceptin every wk x1yr
10/05 Bilat Mast - my Choice
10/05 3/19 lymph nodes Pos, Stage IIIa
11/05 Rad x 37 Rx, R Brst & Axcilla
02/06 Herceptin stopped (L vent HF 40)
03/06 Started & Stoped Arimidex after 2 mos.-QOL side effects
05/06 Started Tamoxafin
06/06 Bilat Free Flap Reconstruction
12/06 Cardiomyopathy reversed-HF normal
01/07 Bilat Saline Implants
07/07 CA 27-29 steadily rising from 28 in 12/06 to 46 in 7/07
07/07 PET Scan NED, but inflamation at prev surg site.
09/07 Started Femara
10/07 CA 27-29 down to 39
06/08 CA 27-29 down to 32
09/08 Lg joint pain & QOL side effects from Femara, will live w/ to keep CA markers within normal range.
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10-07-2007, 06:32 PM
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#11
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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June 06 regional recurrence shows HER2+.
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14 YEARS NED!
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10-07-2007, 07:13 PM
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#12
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Senior Member
Join Date: Mar 2007
Location: Greendale, WI
just outside Milwaukee
Posts: 211
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Ooooops, should not drink and post at the same time anyway. Sorry for doubting you. Karen
__________________
04/05 Onset 49, DCIS, solid, Hist 2/3, Nucl 2/3, 7cm R Brst
04/05 E & P + HER2+++
05/05 Mediport
05/05 Cytoxan & Adriamycin every 3wk x4
08/05 Taxol every 2wk x 4, Herceptin every wk x1yr
10/05 Bilat Mast - my Choice
10/05 3/19 lymph nodes Pos, Stage IIIa
11/05 Rad x 37 Rx, R Brst & Axcilla
02/06 Herceptin stopped (L vent HF 40)
03/06 Started & Stoped Arimidex after 2 mos.-QOL side effects
05/06 Started Tamoxafin
06/06 Bilat Free Flap Reconstruction
12/06 Cardiomyopathy reversed-HF normal
01/07 Bilat Saline Implants
07/07 CA 27-29 steadily rising from 28 in 12/06 to 46 in 7/07
07/07 PET Scan NED, but inflamation at prev surg site.
09/07 Started Femara
10/07 CA 27-29 down to 39
06/08 CA 27-29 down to 32
09/08 Lg joint pain & QOL side effects from Femara, will live w/ to keep CA markers within normal range.
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10-07-2007, 07:20 PM
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#13
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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LOL - friends don't let friends drink and post...
__________________
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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10-09-2007, 01:16 AM
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#14
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Member
Join Date: Jun 2007
Location: Staffordshire, England
Posts: 22
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Hi there
Just an update on me.. I saw my oncologist yesterday..
I start Navelbine and herceptin next week. After that he says he will try a platinum based chemo and then move on to weekly taxol..
I pray that this chemo option stops my lung mets in thier tracks..
Many, many thanks to all you very helpful ladies who are having to deal with with horrid disease.. much love to you all..
Jakki - over here in rainy England...
xxxx
__________________
Jakki
-xx-
DX May 2005 grade 3 IDC - partial mastectomy/immediate LD Recon. 0 /20 lymph nodes affected
Er+PR+HER2-
E-CMF chemo July 05 - Feb 06, 33 x rads. Tamoxifen
June 06 - Regional Reccurrence - supraclavicular lymph nodes, HER2+. Taxotere chemo Aug 06 - Dec 06, 25 x rads, Arimidex, zoladex, Herceptin.
Feb 07 - further supraclavicular progression, re-staging tests.
April 07 - Lung mets DX, oncologist trying to get me on Tykerb & xeloda on LEAP trial.
June 07 - Lung mets doubled in size, 3 new tumours and one in my back - commenced Tykerb/Xeloda - Zoladex & Arimidex stopped.
September 07 - Tykerb/Xeloda failed.. lung mets still growing and more new ones
October 2007 - Commenced Vinorelbine and back on Herceptin again..
March 2008 - New Scans reveal lung mets still progressing, now have 3cm Liver Met and Bone Met to Sternum - looking for a new clinical trial...
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