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01-03-2009, 10:02 AM
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#1
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Senior Member
Join Date: Jun 2006
Location: Rockwall, Texas
Posts: 26
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Navelbine
I am getting ready to start Navelbine next week. This will be my 3rd line chemo. I did Taxol for a year weekly and then off a year. I started Tykerb. Xeloda could not take made me sick and then they started Gemzar which I ended up in the hospital after 2 rounds for 3 months. I developed ARDS and was on a vent for 8 days. At that point I lost all ability to walk.(Through rehab I can walk again. Praise God) I was also diagnosed with TTP during that time which is a blood disorder and there are tiny blood clots through out your body. It has messed with my kidney function however it is much better now. They say it was caused by the Gemzar. I was not expected to live. I am really scared to start a new chemo, but I am also scared not to. Any personal info on Navelbine would be so greatly appreciated.
__________________
Shonda Gaylord
36 M 5 children 16,12,9,7 yr old twins
DX 2-06 at 33 yrs old
4-06 Bi lateral mastectomyw/ recon
5-06 Taxol/Carbo Herceptain weekly
Have Mets in bone dx'd 1 week after surgery
5-07 Implant exchange
Chemo Holiday about 1 year
started Tykerb/Xeloda 6 days (Very sick)
Started Gemzar did 2 rounds (got very sick) In hospital 3 months w/ ARDS and TTP and CMV.
1-09 Started Navelbine/Herceptain weekly
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01-03-2009, 10:36 AM
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#2
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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My goodness Shonda! What an experience. I'm surely glad you are much better. I took Navelbine with H after several others (signature) and found it to be extremely doable! I found that when taking Taxol I had to have it really slow to be able to avoid the reactions (scary). They just kept me on that routine even throughout Herceptin for 2 1/2 years. Maybe that would help you too. I also remember some of the gals saying they had them give H in some different fluid(they'll chime in). Good luck and keep on believin'. 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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01-03-2009, 10:49 AM
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#3
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Senior Member
Join Date: Apr 2008
Location: NY
Posts: 240
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Hi Shonda - I was on Navelbine for four months (an unorthodox drug regime my oncologist recommended so I wouldn't suffer heart problems). I received the infusion every two weeks with Herceptin with no pre-meds (the pre-meds caused me terrible constipation and gas.) Navelbine is known for burning your veins so I had to get a port - but my port became infected so they had to use my veins anyway. They ran it with saline at the same time and that solved the burning problem. My only other problem with Navelbine was it caused painless diarrhea for about 3 hours after my infusion - but the next day I'd be fine. I hope you have no side effects from this drug - sounds like you've been through enough already! Good luck!
__________________
xxoo
Kathy
2/5/08 - dx age 53, post-menopausal;
IDC Stage 1, Grade 1
ER+ 90% /PR+ 90% /Her2++++, BRAC1 & 2 neg
3/5/08 - mast with muscle-sparing free tram;
0/7 nodes clear; Stage 1 lymphedema in right arm
3/11/08 - MRSA infection in abdomen causes large hernia
4/11/08 - Oncotype DX score 22 (intermediate)
4/12/08 - Muga score 67%
4/23/08 - Chemo, Navelbine and Herceptin every 2 weeks
8/20/08 - Last Navelbine infusion! Yay!
1/22/09 - First mammo since dx - unaffected breast CLEAR!
1/30/09 - Second Muga score 63%
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01-03-2009, 02:21 PM
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#4
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Hi Shonda, I was on Navelbine for almost a year and had no problems at all, I even kept my hair. It was the first drug I was on that showed NED on a PET scan. I have been on so many, but I felt Navelbine was the least problematic drug I have done and it worked for a long time. Let us know what you decide. Love, 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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01-03-2009, 02:59 PM
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#5
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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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I had Navelbine and found it to be one of the easiest to tolerate that I have had. Hopefully it will be the same for you.
__________________
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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01-03-2009, 04:48 PM
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#6
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Senior Member
Join Date: Jun 2006
Location: Grand Terrace, Southern California
Posts: 114
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Shonda, I am starting Navelbine with herceptin on Monday the 5th. Lets keep each other posted about are treatment. Good luck with this one and I wish you do well. xoxoxo
Rendi
__________________
04/97- breast bx. diagnosis breast cancer.
05/97- radical mastectomy; 5cm tumor & 11 lymph nodes.
10/97- City of Hope, high dose chemotherapy.
11/97- 36 radiation therapy.
01/98- NED; tamoxifen.
02/02- breast reconstruction.
08/04- recurrence; mets to rt lung; thoracentesis; femara.
09/04- thoracentesis; ER/PR +, Her2+++.
10/04- total abdominal hysterectomy.
02/06- mets to 9th rib; monthly zometa; arimidex.
06/06- medi port insert; weekly herceptin.
10/06- 3 weeks herceptin treatment.
02/07- mets to liver; arimidex
11/07-liver clear
02/08-chemo taxol/herceptin weekly treatment
12/08-taxol not working
01/09-navelbine/herceptin weelky
03/09-navelbine not working
04/09-xeloda/tykerb
09/09-30 radation to neck; xeloda/tykerb not working
11/09-Gemzar/herceptin weekly
04/10-tykerb/herceptin weekly
06/10-cancer spread to left lung;stop treatment; tap
07/10-right lung collasps; TDM1
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01-03-2009, 04:48 PM
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#7
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Senior Member
Join Date: May 2006
Posts: 3,142
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Navelbine
I took Navelbine. I only got tired for 24-36 hours afterwards, but had none of the heavy duty side effects.
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01-03-2009, 05:50 PM
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#8
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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I' m sorry to hear of all the complications you've had. My goodness you are do for an easy treatment routine. I hope navelbine will be the ticket for you. I was on navelbine for a year & it was very tolerable. The biggest issue for me was low white blood count, but I took neupogen shots, and only once did I have to skip a week of treatment. I felt pretty good while on it - just more tired for a day or two.
__________________
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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01-04-2009, 09:08 AM
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#9
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Senior Member
Join Date: Jun 2006
Location: Rockwall, Texas
Posts: 26
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Thank you for all of the positive information and Best wishes to all of you.
__________________
Shonda Gaylord
36 M 5 children 16,12,9,7 yr old twins
DX 2-06 at 33 yrs old
4-06 Bi lateral mastectomyw/ recon
5-06 Taxol/Carbo Herceptain weekly
Have Mets in bone dx'd 1 week after surgery
5-07 Implant exchange
Chemo Holiday about 1 year
started Tykerb/Xeloda 6 days (Very sick)
Started Gemzar did 2 rounds (got very sick) In hospital 3 months w/ ARDS and TTP and CMV.
1-09 Started Navelbine/Herceptain weekly
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01-04-2009, 05:23 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Navelbine is well tolerated for most people. I had to receive procrit shots and had mouth sores after my first infusion. I was never really sick, but a little tired the next day. I did not care for this drug because Herceptin alone was easier, and Navelbine did give me mild neuropathy. The T-DM1 trial is much easier for me. Nevertheless, as chemo drugs go, this is an easy one.
Best regards,
Barbara H.
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01-04-2009, 05:28 PM
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#11
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Guest
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What is the T-Dm1 trial?
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01-04-2009, 08:26 PM
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#12
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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It is Herceptin with a small attached molecule that is brought to the cancer site by Herceptin. There are many posts about it on this forum and in the trial section. It has been a great trial for me and has put me in remission. It has caused a mild inflammation in my lungs as a side effect and I am currently using streoids to deal with that issue.
Best wishes,
Barbara H.
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01-04-2009, 10:18 PM
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#13
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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H -
Welcome to the Navelbine Club. A lot of us here have had to use it at some point, usually for mets.
I took it with Taxol and Herceptin for 7 months weekly. Am pretty sure it was the Taxol that was the hardest on me of that combo. But they WORKED! I have been in remission ever since and that is going on 7 years.
We hit my liver tumors hard with a 3-pronged approach and though I was tired, lost hair, had mouth sores - it was actually no worse as a group than Adriamycin.
I know others who have had good luck with that drug and been able to go back to it after a time and do well again.
__________________
"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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01-05-2009, 10:41 AM
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#14
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Hi ShephN
Love you snowflake sweater, I collect them and your
new picture is great.
patb
__________________
patb
Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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