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08-03-2011, 08:15 PM
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#21
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Re: ca.2729 big jump
Nothing to offer about chemo options but does a HUGE, yet GENTLE hug count for something? Hugs and prayers for you Pam. :-)
__________________
"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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08-03-2011, 09:40 PM
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#22
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: ca.2729 big jump
Pam, I am praying for you everyday!
Isn't there a cancer group in MN that raises money for cancer patients to go to other states to try new treatments?
I know a fellow sister who traveled the country for 8 years with triple negative dx and drug companies paid to have her put up and air fare to try new treatments and or to come to there seminars to here about new cancer drugs. Unfortunetly her fight ended in May or I would ask her for some names of companies and groups .
On the other hand maybe there is another sister on this site from MN that may know some or could help locate them. Just trying to help. I will try to find something out also.
Gods blessings to you!
__________________
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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08-04-2011, 06:20 AM
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#23
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: ca.2729 big jump
Are the financial resources available to travel for trial or any distant treatment sites? I never heard of any. How would I find out? Today with all the budget cuts it might be one thing that has been discontinued?
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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08-04-2011, 07:42 AM
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#24
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Re: ca.2729 big jump
Pam, I think Brenda would know...seems Chrissy posted about this...
__________________
"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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08-04-2011, 05:50 PM
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#25
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: ca.2729 big jump
Hi Pam, I'm still working on finding info. for you!
__________________
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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08-04-2011, 06:03 PM
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#26
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: ca.2729 big jump
Hi Pam, I haven't tried these yet. If you want to look into these, I know how important it is to feel like your doing something. There are so many! I have others checking for drug companies. If You want I can start emailing you through private messages. Gods blessings!
www.greatguys.org
ww5.komen.org
Free Air Travel for Breast Cancer Patients/Facebook
__________________
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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08-05-2011, 02:16 AM
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#27
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Senior Member
Join Date: May 2010
Posts: 432
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Re: ca.2729 big jump
Sorry to hear about it.Hope & Pray everything will work out fine
__________________
PBK
huband of Hema
Metstatic Breast Cancer Stage 4
Left breast cauliflower 25x20cm
ossousmetstatis in vertbrae secondaries L4=L5secondary
nodules in both liver lobes secondary
Diagnosed 10th March 2010
ER/PR-ve
Her 2 neu +++
Taxotrne Zylotec started 16th March
Herceptin added 5th April.9th Herceptin over on 20th Sep '10.Started on Tykerb and Xeloda on 22nd Oct2010TYKERB 4 TAB A DAY XELODA 4 TAB A DAY ONE WEEK ON ONE WEEK OFFZoletrust infusion every 4 months.Lesion in Brain 3D CRT Radiation started on 1st Feb'12 for 20 days ,5 days a week for 4 weeks.Devloped a small lump in breast.Xeloda stopped from 11th April '12.On Taxol.After 3 cycles of Taxol Taxol stopped.Back to Xeloda regime from 3rd July
Herceptin started again on 27th Dec 2012.Xeloda stopped Navelbin added on 7th February 2013.Now on Tykerb Herceptin and Navelbin
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08-05-2011, 04:12 AM
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#28
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: ca.2729 big jump
Ishey Lacey - Thank you so much for helping to identify travel expense help. I won't know until I see the doc on 8/18 what direction of chemo he wants me to go, but if it means travel then maybe I can do it now. Pam
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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08-05-2011, 10:29 AM
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#29
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Senior Member
Join Date: Jun 2011
Location: Iowa
Posts: 231
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Re: ca.2729 big jump
Pam, I see you are in MN. I am in Iowa and my oncologist says there is a doctor in Cedar Rapids, IA who can get TDM-1. Also do you know that you can stay for free at alot of hospitals that have hotels associated with them. For me in Iowa City (20 min from Cedar Rapids) we have the Hope Lodge (a Ronald McDonald house for adults) and then inside the hospital there is a hotel and the rooms are $15/night!!!! Please look into those types of options, I'd hate for you to miss an opportunity to get that wonder drug.
__________________
[B]Kristin
Aug 2010: diagnosed stage 3b, 4 mo. after birth of son. 29 yrs old and breastfeeding, ER/PR-, Her-2+ started Neoadjuvant therapy: 4x FEC, 10x abraxane & Herceptin
Feb 2011: L mx with recon. Path. showed only DCIS but 4/10+ nodes.
March 2011: 6 wks rads.
Mother passed, lower back pain.
Late May 2011: Bone mets but organs clear; Tykerb, Xeloda, Xgeva. Stopped Herceptin. Implant infected: removed implant.
October 2011: Bone progression; Gemzar and Carboplatin & restarted Herceptin.
Jan 2012: Progression, re-classified as ER+; Tykerb, Herceptin, Zoladex & Femara. Anti-E is working!
May 2012: ovaries out, markers stable but elevated. Cont. Herceptin, Tykerb, Xgeva & Femara.
Dec 2012: aromasin
Jan 2013: faslodex, herceptin, tykerb
Jun: Kadcyla
Aug: Rads to hip, then Perjeta, Herceptin & Taxotere
Nov 2013: Perjeta, Herceptin, Halaven
Early 2014: Affinitor, Aromasin, Perjeta, Herceptin.
June 2014: Estradiol, Perjeta, Herceptin
Aug 14: Tamoxofin, H & P
http://kristin-notdying-blog.blogspot.com/
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08-05-2011, 10:33 AM
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#30
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Senior Member
Join Date: Jun 2011
Location: Iowa
Posts: 231
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Re: ca.2729 big jump
__________________
[B]Kristin
Aug 2010: diagnosed stage 3b, 4 mo. after birth of son. 29 yrs old and breastfeeding, ER/PR-, Her-2+ started Neoadjuvant therapy: 4x FEC, 10x abraxane & Herceptin
Feb 2011: L mx with recon. Path. showed only DCIS but 4/10+ nodes.
March 2011: 6 wks rads.
Mother passed, lower back pain.
Late May 2011: Bone mets but organs clear; Tykerb, Xeloda, Xgeva. Stopped Herceptin. Implant infected: removed implant.
October 2011: Bone progression; Gemzar and Carboplatin & restarted Herceptin.
Jan 2012: Progression, re-classified as ER+; Tykerb, Herceptin, Zoladex & Femara. Anti-E is working!
May 2012: ovaries out, markers stable but elevated. Cont. Herceptin, Tykerb, Xgeva & Femara.
Dec 2012: aromasin
Jan 2013: faslodex, herceptin, tykerb
Jun: Kadcyla
Aug: Rads to hip, then Perjeta, Herceptin & Taxotere
Nov 2013: Perjeta, Herceptin, Halaven
Early 2014: Affinitor, Aromasin, Perjeta, Herceptin.
June 2014: Estradiol, Perjeta, Herceptin
Aug 14: Tamoxofin, H & P
http://kristin-notdying-blog.blogspot.com/
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08-05-2011, 10:58 AM
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#31
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: ca.2729 big jump
Thank you Kristin. If I can qualify for tdm1 I will check this out.
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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08-05-2011, 12:38 PM
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#32
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Senior Member
Join Date: Jun 2011
Location: Iowa
Posts: 231
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Re: ca.2729 big jump
Sorry to be redundant, but here is a portal to Hope Lodge's all over the country! http://www.cancer.org/Treatment/Supp...opeLodge/index
There are two in Minnesota even!
I met quite a few people staying at them when I was receiving radiation, they were staying there during the week for treatments then going home over the weekends- they said it was really nice.
__________________
[B]Kristin
Aug 2010: diagnosed stage 3b, 4 mo. after birth of son. 29 yrs old and breastfeeding, ER/PR-, Her-2+ started Neoadjuvant therapy: 4x FEC, 10x abraxane & Herceptin
Feb 2011: L mx with recon. Path. showed only DCIS but 4/10+ nodes.
March 2011: 6 wks rads.
Mother passed, lower back pain.
Late May 2011: Bone mets but organs clear; Tykerb, Xeloda, Xgeva. Stopped Herceptin. Implant infected: removed implant.
October 2011: Bone progression; Gemzar and Carboplatin & restarted Herceptin.
Jan 2012: Progression, re-classified as ER+; Tykerb, Herceptin, Zoladex & Femara. Anti-E is working!
May 2012: ovaries out, markers stable but elevated. Cont. Herceptin, Tykerb, Xgeva & Femara.
Dec 2012: aromasin
Jan 2013: faslodex, herceptin, tykerb
Jun: Kadcyla
Aug: Rads to hip, then Perjeta, Herceptin & Taxotere
Nov 2013: Perjeta, Herceptin, Halaven
Early 2014: Affinitor, Aromasin, Perjeta, Herceptin.
June 2014: Estradiol, Perjeta, Herceptin
Aug 14: Tamoxofin, H & P
http://kristin-notdying-blog.blogspot.com/
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08-05-2011, 02:18 PM
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#33
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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Re: ca.2729 big jump
Pam there is also free air transportation thru..
http://angelflight.com/
Hope Lodges are all free...
I used them 5 years ago...wonderful experience and people!
Marcia |
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08-05-2011, 06:36 PM
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#34
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: ca.2729 big jump
Hi Pam,
I'm so happy with all the help your getting! let me know if there is anything else I can help you with. I'm still looking. I'm interested in seeing what your dr says next.
Gods blessings!
Nancy
__________________
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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08-05-2011, 11:47 PM
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#35
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: ca.2729 big jump
Hello again Pam, We hit the jackpot! go to the group forum "clinical trials" read the post (by Chrissy) "TDM-1 eap Good news for those in tdm1 eap who need to travel.
at the bottom you will notice a great list of resources! Is this Support Group great or what?!!!!!!
__________________
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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08-12-2011, 04:53 PM
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#36
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Senior Member
Join Date: Jun 2009
Posts: 343
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Re: ca.2729 big jump
Hey Pam,
Just wanted you to know I'm thinking of you and sending positive thoughts your way.
__________________
Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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08-15-2011, 10:33 AM
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#37
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Senior Member
Join Date: Jul 2009
Location: New York
Posts: 106
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Re: ca.2729 big jump
Pam, I hate that you have to go through more of this. I am hoping for some good news along the way & sending good thoughts your way.
__________________
Mammo 6/2/09
left breast biopsy 6/12/09
Bad news 6/18/09!
7/17/09 lumpectomy
Stage 1- 0.5 cm IDC , DCIS 25%
HER2 +++, ER+95%, PR+10%
8/09 Muga Scan 65
8/19/09 beg. TCH 1Xwk. 12 wks.
last chemo 11/26/09
IMRT - 33 txs. 1/12/10 to 3/11/10
Herceptin 1X week for 1 yr. Ends 8/10
Femara 3X wk. started 1/13/10-too much pain in middle finger; switched to Arimidex 4/28/10 -permanently swollen, but no pain. Will continue for 5 yrs.
10/2/11 CT/PET scan due to elevated CA27.29 of 40.5.
Hot spot in irradiated area. Score goes down again to normal range. Subsequent blood tests go up and down until 2 tests in row at elevated levels of 42.5 & 45.7.
7/9/11 Intermittent vertigo. As a precaution contrast MRI to head. NED.
8/15/11 Erratic CA27.29 may be result of new auto immune disease, bullous pemphigoid (skin problem)
Off Arimidex for 6 wks. to see if trigger finger improves
Switched to Aromasin, 3X wk., but affected my liver.
On 2/23/12 taken off AI's.
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08-15-2011, 10:35 AM
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#38
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Senior Member
Join Date: Jul 2009
Location: New York
Posts: 106
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Re: ca.2729 big jump
Just saw all the TDM-1 information. What a great group!
__________________
Mammo 6/2/09
left breast biopsy 6/12/09
Bad news 6/18/09!
7/17/09 lumpectomy
Stage 1- 0.5 cm IDC , DCIS 25%
HER2 +++, ER+95%, PR+10%
8/09 Muga Scan 65
8/19/09 beg. TCH 1Xwk. 12 wks.
last chemo 11/26/09
IMRT - 33 txs. 1/12/10 to 3/11/10
Herceptin 1X week for 1 yr. Ends 8/10
Femara 3X wk. started 1/13/10-too much pain in middle finger; switched to Arimidex 4/28/10 -permanently swollen, but no pain. Will continue for 5 yrs.
10/2/11 CT/PET scan due to elevated CA27.29 of 40.5.
Hot spot in irradiated area. Score goes down again to normal range. Subsequent blood tests go up and down until 2 tests in row at elevated levels of 42.5 & 45.7.
7/9/11 Intermittent vertigo. As a precaution contrast MRI to head. NED.
8/15/11 Erratic CA27.29 may be result of new auto immune disease, bullous pemphigoid (skin problem)
Off Arimidex for 6 wks. to see if trigger finger improves
Switched to Aromasin, 3X wk., but affected my liver.
On 2/23/12 taken off AI's.
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