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12-17-2007, 05:13 PM
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#1
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Deceased
Join Date: Oct 2005
Location: Chadds Ford, Pa
Posts: 206
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Navilbene Side Effects Please
Hi Everyone,
I will be starting on Navilbene weekly with Herceptin on Wednesday and am looking for some guidance on what to expect with side effects. I like to be prepared.
Have you been on Navilbene? Would you please share your side effects with me?
Thanks
__________________
Donna
Diagnosed 2/04 - Invasive ductal - no clean margins
node negative - er+pr+, her2++
Mastectomy 4/04 - 4 rounds AC
9/05 - mets to liver treated with carbo/ixabipelone/herceptin
3/06 - complete remission
9/06 - new liver mets, starting Taxotere/Herceptin
1/07 -Liver mets stable, staying on Herceptin
5/07 - Liver, lung progression - starting T/X
12/07 - Liver, lung progression - starting weekly Navilbene/Herceptin
4/08 - Liver progression - started Abraxane, Carbo, Tykerb and Herceptin
7/08 - Liver Progression - started Gemzar, Avastin and Tykerb
10/08 - Liver progression - starting Doxil
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12-17-2007, 07:32 PM
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#2
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Donna
I have not been on it but my friend has been for 6 months...other than a couple times when her counts were down, she has done amazingly well with very few side effects....and it has worked well on her nodes....may it be easy and kick butt for you too!
__________________
"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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12-17-2007, 07:58 PM
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#3
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Senior Member
Join Date: Aug 2006
Location: Franklin, MA
Posts: 131
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I have been on Navelbine for awhile (Oct. 06 - Mar. 07 and started again July 07 through the present). The biggest problem for me is my low counts. I end up getting Neupogen and Neulasta injections to keep the counts in check (and have sometimes had to get a reduced dose). My tastebuds are off and I need to take a sleeping pill the night of treatment to counteract the steroid they give as a pre-med. I haven't really had problems with nausea (but they give me an anti-nausea called Aloxi before each treatment). The Aloxi then "backs up my system", so I also have to take Miralax after treatment. I also have some problems (slight) with neuropathy in my fingertips...nothing that has interfered with day to day life.
My last scan in October was clear...but I am continuing the Navelbine to keep the cancer away, since when I went off it in March, it only took 3 months before I "lit up" on the PET scan again.
I have learned to live with these side effects...life really is tolerable going through this treatment. I am sure you'll do fine! Best of luck to you.
__________________
Diagnosed 10-03-2005 (34 wks pregnant, 38 yrs old)
Lumpectomy Nov-2005. 10/18 Lymph Nodes impacted
Mets to liver, spine & femurs (thus being stage IV right from the get-go)
ER-, PR-, HER2+
Taxol/Herceptin/Zometa started Dec-2005. 11 cycles of Taxol.
Sept-2006: PET/CT scan of mets to liver, spine and femurs - Stable. Activity in R breast & mediastinum (not seen in prior scans).
Navelbine (3 wks on/1 wk off) as of Oct--2006 & continued Herceptin (every 3 wks) & Zometa (every 6 wks)
Jan-2007: PET/CT Scan - Stable. Continued Nav. through March-2007, then Herc./Zom. only after that.
June-2007: PET/CT Scan - activity in mediastinum. Back on Navelbine as of July-2007.
Scanned Quarterly since Oct-2007 - a few small scares, but otherwise stable due to continuing weekly Navelbine, Herceptin and Quarterly Zometa.
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12-18-2007, 11:41 AM
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#4
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Senior Member
Join Date: Sep 2005
Location: St. George, UT
Posts: 582
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Donna, I was on navelbine and herceptin for 6 months and then just herceptin for another year. I had almost no side effects with navelbine, didn't lose my hair or have nausea. Just very tired, but that may have been the herceptin. After the year of herceptin I did lose my eyebrows, which have never come back. I just draw them on now! I believe navelbine is probably the mildest of chemos and well tolerated. It also seems to do the job. You should do very well. Good luck and hugs, tricia
Last edited by TriciaK; 12-18-2007 at 11:42 AM..
Reason: addition
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12-18-2007, 07:24 PM
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#5
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Senior Member
Join Date: Sep 2005
Posts: 556
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I was on Navelbine for 3 months along with Herceptin. The major side affect I had was ferver for 3 days starting 2nd day after the infusion. Other minor affects are borderline low counts and some body ache. Overall it was manageble, I was able to manage the house work and my two small children. I also took Leukine to support the counts in the last month of Navelbine.
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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12-18-2007, 11:19 PM
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#6
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Donna, I've had Navelbine 3 seperate times in the past and side effects are very manageable. Low counts are the biggie, and for me that meant sometimes getting a half-dose if I was close to borderline, or having to skip the N and just get Herceptin if I was below the cutoff for white counts. My red counts also suffered, and eventually I had to start Aranesp injections every other week to keep them decent.
Stomach issues were a minor problem, I got Zofran IV the day of treatment, then just doubled up on my Prilosec for a few days until things settled down. I never really had naseau, just very acidic stomach.
I didn't lose my hair, it got thinner along with eyelashes and eyebrows but not really noticeable by anyone but me.
Constipation was an issue, you can try Metamucil or a similar product. That usually worked well for me.
Good luck with this combo, I had excellent quality of life while on the combo.
<3 Lolly
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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12-19-2007, 05:31 AM
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#7
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Deceased
Join Date: Oct 2005
Location: Chadds Ford, Pa
Posts: 206
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Thank you all for your responses. I get my treatment today and didn't get much sleep last night worrying about it (you think I'd be used to this by now). But you have calmed my fears some so thank you, thank you!
Gratefully,
__________________
Donna
Diagnosed 2/04 - Invasive ductal - no clean margins
node negative - er+pr+, her2++
Mastectomy 4/04 - 4 rounds AC
9/05 - mets to liver treated with carbo/ixabipelone/herceptin
3/06 - complete remission
9/06 - new liver mets, starting Taxotere/Herceptin
1/07 -Liver mets stable, staying on Herceptin
5/07 - Liver, lung progression - starting T/X
12/07 - Liver, lung progression - starting weekly Navilbene/Herceptin
4/08 - Liver progression - started Abraxane, Carbo, Tykerb and Herceptin
7/08 - Liver Progression - started Gemzar, Avastin and Tykerb
10/08 - Liver progression - starting Doxil
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