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10-27-2006, 09:54 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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some good news
Hi all, just wanted to let folks know that Navelbine appears to be working. I freaked out about the circulating tumor cell test result of 6 (5 or below is considered much better) when I began this tx and received a lot of support from people here about that. After 5 weeks on Navelbine (w/ herceptin) we repeated the circulating tumor cell test. The result was... 0...ta dah!!!! My liver enzymes (ALT/AST) had also begun to drop. Yesterday, I found out that my CA 27.29 went from 240 to 153 in a month and my ALT/AST are so close to normal. I also have to admit that I feel better than I did in many ways. I realize now that the liver tumors were causing me some discomfort-had a lot of denial there.
I've been reading more on here about herceptin side-effecty things and I'm wondering if just being on the stuff long term the way many of us have been makes things start to happen. I have ALWAYS been able to control my weight (grateful for that), but lately I've gained some in the middle and I KNOW I am not eating more than usual. I'm a vege-aholic, i don't like junk food, eat little meat, some cheese, blah, blah, blah. But my clothes are too tight in the waist now, I refuse to buy new ones. i have chronic sinus stuff and some of the digestive junk that people have mentioned.
I'm thinking that I am now resistant to herceptin anyway (maybe navelbine will spark the synergy). Going off of it and on to, say, Tykerb I guess will depend on how long I continue to improve. We are also not sure if I've lost hormonal pathways to treat-I hope not, but I know all of the cross-talk trickiness can happen. I'm excited to see all the good posts about rectifying resistances, though.
Anyway, I'm excited to have good news as this last year has been too much of a rollercoaster. I'm also excited to have hair-i look like an FBI agent, but I have hair! Eyebrows, too, and even better eyelashes than before-it's about time something came back improved! I also realize now how much taxol/carbo depressed me mentally, emotionally and physically. Navelbine has its stuff, but I am energetic enough (comparative value is a wonderful thing) to do more around the house. I'm back to teaching a parent/child class in my kids' school's early childhood program. Volunteering at school a bit more. Goofing off with my kids more. Helping friends out again feels so good after all they have done for me. I take my supplements more consistently. I started an awesome hypno/psychotherapy program. Getting better at meditating too. Saw Deepak Chopra in Denver this week and loved the lecture. His new book is Life After Death; the burden of proof. It so complemented the meditative/hypnotherapy work I've been doing and it all feels good. I just hope I can continue to think these things even when cancer stuff gets rough.
So more update than I planned on giving, but there it is. I am taking time everyday to hold ALL of us in a healing space. I root for everyone and have been saddened by recent losses and setbacks for people. My prayers are with everyone past and present.
__________________
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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10-27-2006, 10:26 AM
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#2
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Joy Joy Joy Joy Joy!
I've been thinking about you a lot and was hoping you'd update with some good news! You've been in my thoughts and prayers. So I'm feelin' your name about your great news.
I'm so glad you not only have gotten great response to this new combo, but especially that you are feeling so much better. I hear you about the taxol/carbo depression - when I was getting that I'd get treated on Friday and by Monday at noon I'd be crying hysterically. Of course there are lots of legitimate emotions and fears we experience, but strong chemo definitely impacted my ability to cope.
So happy you are able to enjoy another slapdown. You didn't mention chocolate...maybe you should meditate on that, too!
love
Chris
__________________
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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10-27-2006, 11:03 AM
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#3
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Senior Member
Join Date: Sep 2005
Location: Central Florida
Posts: 503
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Jump for Joy!
I am really happy for you ... congrats!
MTS (Maria)
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10-27-2006, 01:08 PM
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#4
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Thank you for sharing your good news. I'm pleased to hear that you are also feeling better.
Barbara H.
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10-27-2006, 02:07 PM
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#5
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Yesss!!! That is great news!! I am so happy that you are feeling well and the navelbine is doing its job!
Hugs and Prayers,
Lexi
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10-27-2006, 03:28 PM
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#6
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Senior Member
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
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I join the others in congratulating you on your good news. Thanks for keeping up in your thoughts and keep up the good work. I hope your new drug combination works really well for you.
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10-27-2006, 03:29 PM
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#7
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Senior Member
Join Date: Aug 2006
Location: PA
Posts: 188
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Joy,
Just wanted to say that I am so very happy for you, that things are looking up ! We all deserve a reprieve from all the gloom & doom that we can feel during our journeys with this dreadfull disease. I feel happy just reading about your happiness ! Thanks for sharing
__________________
Susan V - Pittsburgh PA
DX Age 37 on August 3, 2006
Stage 1 Grade 3
ER/PR + (Highly Positive)
Her 2 +++
1.3 & 1.2 tumors right breast
node negative
lumpectomy 8-15-06
A/C Began 9-5-06 Finished A/C 11/6/06
Port Placement 9-15-06
Negative Test for BRAC1 & BRAC2 10-25-06
Began Tamoxofin November 21, 2006
First Herceptin November 27, 2006 Continues every 3 Weeks
First Radiation Treatment December 11, 2006
35 Rads Completed
Final Herceptin Treatment November 12, 2007
Port Removal November 19, 2007
Living Life to the Fullest !!
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10-27-2006, 04:01 PM
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#8
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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You GO girl!!! Great news!!!
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10-27-2006, 06:27 PM
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#9
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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So happy to hear that the Naveline seems to be working. Treat yourself -- you certainly deserve it!
__________________
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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10-27-2006, 07:33 PM
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#10
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Senior Member
Join Date: Oct 2005
Posts: 823
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Joy this is such WONDERFUL news. I am so glad that you are feeling so much better.
You will remain in my prayers.
Sending ((((((HUG'S))))
__________________
Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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10-27-2006, 07:40 PM
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#11
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Senior Member
Join Date: Sep 2005
Posts: 290
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Congrats...
What else can I say Joy? Fabulous news. I couldn't be happier for you. And thank you for worrying about the rest of us too.
Sincerely,
Tom
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10-27-2006, 07:47 PM
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#12
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Senior Member
Join Date: Dec 2005
Posts: 274
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Hi Joy,
God Bless on the good news. This is an inspiration for us all.
Sincerely,
Liz J.
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10-27-2006, 07:48 PM
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#13
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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I'm glad things are working out. Take it as the gift it is,I hope all your new news is great. BB
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10-28-2006, 12:27 AM
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#14
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Senior Member
Join Date: Sep 2005
Location: .
Posts: 211
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Great news Joy. Its so nice when a chemo works - all the best.
love
lindaw
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10-28-2006, 04:10 AM
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#15
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Senior Member
Join Date: Sep 2005
Posts: 556
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great news Joy, I am so happy for you
Julie
__________________
Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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10-28-2006, 05:17 AM
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#16
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Senior Member
Join Date: Sep 2005
Posts: 589
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0, doesn't get any better than that. You go girl! Eric
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10-29-2006, 01:45 PM
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#17
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Senior Member
Join Date: Nov 2005
Location: Colorado
Posts: 76
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Dear Joy,
Thanks for sharing the great news!!!
Karen Hunt
__________________
Karen Raines Hunt
Dx April 2005 at age 46
stage 3A, very large (12cm) tumor
2 positive axillary lymph nodes
ER+/PR+, Her 2 +++
Bilateral mastectomy, radiation, reconstruction, A/C, Taxol, Herceptin, Tamoxifen, Aromasin
5 yrs since diagnosis and NED
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10-29-2006, 03:09 PM
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#18
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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thanks!
Thanks everyone, I can hear your cheers and it feels great!
__________________
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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10-29-2006, 07:32 PM
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#19
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Dear Joy
Navelbine has been a good drug for a number of us on this board. It did in my extensive liver mets, in combination with Taxol and Herceptin. As has often been said here, for many of us the Herceptin needs another drug to boost its efficacy, and this is the key to pushing back the cancer.
As the others have said, I repeat how happy I am for your recent success.
Stay with the program until you are NED. OK?
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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10-29-2006, 10:25 PM
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#20
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Senior Member
Join Date: Jun 2006
Posts: 44
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ta dah is right!
Joy,
What great news that your test results are going in the best direction possible. Keep up the good work you're doing in all areas, from the medical to the family and social connections you've got going again. The meditation is an excellent way to calm things in our lives. I saw Deepak Chopra on television talking about his book; I'm sure it's a good one, but I haven't read it yet. Thanks for filling us in on everything. Keep living well.
Vicki Z
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