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03-03-2009, 11:13 AM
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#1
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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In 25 minutes
I go see the onc about my latest CT from a week ago. I have had 4 rounds of Epirubicin/Cytoxan/Herceptin for the stupid liver business. My stomach is doing flip-flops. I just hate these visits and at the moment I am thinking of hopping in my car and driving DIA and getting on a plane to Mexico instead of going to the appointment.
My fears are, obviously, that this isn't working or not working fast enough which would make yet another treatment protocol I've blown through in a fairly short time. And what the heck would we do next. Short of trials, which I am very willing to do, I feel as though I am close to the end of the list for treatments. I have become obsessive with worry and any little symptom-y thing and I have been forgetting how to just live my life. I am paralyzed by it and can't see a future/the future or plan for it. I so want to as I have so much going on that is great.
Soooooo, I guess, I am asking for some extra positive energy in the next hour or so from all of you. I'll try to absorb it and grow it and send it back to everyone.
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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03-03-2009, 11:18 AM
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#2
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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Joy,
Just logged in and saw your post. I am not far away so the "vibe" should be very strong. Sending you LOTS of good thoughts, warm hugs from the Denver Tech Center!!!
I'll be praying that this is the treatment that sends those liver buggers packing!!!
Lori
__________________
2007
Oct - Diagnosed - Stage IV 5 c.m. IDC - Left Side er/pr- Her2+++ Node + 2/14 - Single Liver Met Double Mastectomy Nov - Begin T+H 2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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03-03-2009, 11:21 AM
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#3
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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Thinking of you right now and praying for good news. I have that run away place in the back of my mind also...I tell my husband that if I go missing..it's because I've bought a one way ticket to Tahiti and have said "to hell with it". sherryg683
__________________
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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03-03-2009, 11:25 AM
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#4
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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Praying for you and sending lots of positive vibes. May god bless you with good results for your CT scan and fill with hope and joy!
Praying hard!
love,
shobha
__________________
DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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03-03-2009, 11:49 AM
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#5
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Joy and Sherry,
Hmmm....Maybe that boarding a plane for exotic places isn't such a bad idea...wait for me! I'm packed and ready to go most days of late.
Joy, Hang in there, sweet girl, there are more trials coming sooon. I am waiting for RAD001 and am thinking about going to MD Anderson in the next few weeks. I, Too, have reached the end of the "protocol" train. Though, I will keep wishing for a miracle for us all, and a fear-free existence for the time we are here. My heart and love reach out to you in this hour of need. Let those tears fall freely and open your heart to the universe. There is help on the way...we're not ready to check out any time soon, Joy...and before we do, I say we get on a plane with all the others in our place and fly to the sun and sand and sea. I love you very much (I'm holding your hand as we speak), Vickie
__________________
Love and Hugs, Vickie
Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.
Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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03-03-2009, 01:04 PM
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#6
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Hi Joy,
Sending extra good vibes that this is working. Please keep us posted.
Carolyn
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03-03-2009, 01:17 PM
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#7
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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Thinking of you ,Joy..and am concerned...
please let us hear from you!
Marcia
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03-03-2009, 01:40 PM
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#8
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Sending up prayers and the very best wishes for you Joy. ma
__________________
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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03-03-2009, 01:58 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Joy,
Hugs and prayers and love for you, no matter what information you get at your appointment. You are a shining light and I love you.
Chris
PS - I just read on another post; you were sending Colorado sunshine to Eric and Caryn just before posting this...so you really ARE a shining light!
__________________
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
Last edited by chrisy; 03-03-2009 at 02:15 PM..
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03-03-2009, 02:02 PM
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#10
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Senior Member
Join Date: Feb 2006
Posts: 437
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Joy,
I am an infrequent visitor to these boards, but when I do come on, I am always amazed by your spirit.
I am thinking of you and praying that you get good results.
God Bless.
__________________
Linda
Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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03-03-2009, 02:40 PM
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#11
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Senior Member
Join Date: May 2006
Posts: 3,142
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In 25 minutes
Good thoughts are coming your way from Hawaii.
Hang in there and keep putting one foot in front of the other. Please don't run away to Mexico yet. Stay here with us !!
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03-03-2009, 03:43 PM
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#12
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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well color me surprised
Thank you so much for all the vibes-i think they helped. The E/C/H combo has caused regression of liver activity by 30-40%. I am pleased, as is the doc. So since I had 4 Epirubicins recently and 4 Adrias in 2000 she thought instead of waiting until progression on E/C/H and run the anthracycline option out due to lifetime maximum we would start Tykerb again, but with herceptin. And I believe that is the 4 pills, rather than 5-right gals? And I have to refresh my memory-is that empty or full stomach? And I have to remember if I prefered night or day last time. I know there are threads I can look up. I did not have much of an issue with diarrhea when I was on the tykerb/xeloda mix, but we will see with this. So that is the current plan. As you know there is some good data on the combination. What we are a little unsure of is the fact that I have progressed on both in other combinations, but she said that shouldn't exclude the potential for this combo to work. If any of you have had this experience, I would love to know. As in, had you had H then progression and T and then prgression, but then combined them.
My oncs office has started doing phase I trials in addition to later phase trials and the first one they are offering is for CX-4945. I think it is a targeted therapy for solid tumors. They have 2 people on it so far in the dose escalation phase, both older men, one with prostate and one with lung. So far so good for tolerating. This is a cohort study so other facilities are/will be participating. May be something to look into for someone and we are keeeping it in ouir back pocket for now.
So, again, thank you to everyone for your support and thoughts and more coming your way from me.
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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03-03-2009, 04:00 PM
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#13
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Dang, girl! That is impressive results my dear. I really like your oncologist - got you out of the woods with the aggressive chemo, but really wants to put you back into a more targeted regime. Just when you were getting used to having no hair - go figure!
Good work, Joy - and I deliberately give you credit.
Now to refresh your memory....it's EMPTY stomach on the Tykerb and it doesn't matter if it's am or pm - it sort of depends on how your body reacts to it.
Flori is I think the expert in tykerb+herceptin. I don't think she progressed on Tykerb previously but I'm sure she will chime in.
There was a presentation at San Antonio in the general session where Jenny Chang looked at the different mechanisms of action in Herceptin and Tykerb. It clearly showed they acted on different pathways. So it made sense why one might work while another didn't, and to me it also explained why there might be synergy between the two, moving towards the closing all doors approach. If resistance develops on one path, ambush it on the other path. I know your oncologist will watch you closely on this.
Thanks for the great news!
__________________
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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03-03-2009, 04:09 PM
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#14
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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Great news Joy!! I am looking forward to even better news once you are on the Herceptin/Tykerb combo. You are such an inspiration to so many. Thanks for sharing your heart so freely with all of us.
Much love,
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
********** Enjoy the little things, for one day you may look back and realize they were the big things. - Robert Brault
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03-03-2009, 04:45 PM
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#15
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Senior Member
Join Date: Oct 2006
Location: I live in Christmas, MI - located on the shores of Lake Superior.
Posts: 606
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Joy, I am glad you got some better news and most of all that your doctor is working that hard for you.
I think of you all the time and wonder how you are doing, so I am glad that you posted.
I hope you will continue to come here for positive thoughts and feedback because we love to help you when we can.
__________________
Barb
10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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03-03-2009, 04:51 PM
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#16
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Hola
I guess its no Mexico for you yet! Plus, when you go, you have to drive (with me and other friends). Only provisions are a case of Coke Cola (the real thing), a carton of cigarettes (your choice) and probably some rum since we'll get all the Kahlua and Tequila we want once we get down south (which won't be anytime soon since you're doing well).
Keep smiling Joy. Your smile is great for all of us.
__________________
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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03-03-2009, 08:51 PM
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#17
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Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 889
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Glad to hear about your good results. Hope things continue to work out with the new treatment.
__________________
dx aug 03 invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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03-03-2009, 09:02 PM
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#18
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Wonderful news Joy!!
I am so glad.
karen
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03-03-2009, 09:40 PM
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#19
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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That is wonderful!
Didn't get to read your thread until after your 'crisis' had passed. So glad everything turned out so well. Love your smile.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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03-03-2009, 09:46 PM
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#20
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Great news Joy... so happy for you.
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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