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Old 12-15-2010, 11:34 PM   #1
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anyone on navelbine / herceptin?

Anyone on weekly Navelbine and every 3 weeks Herceptin delivered through a port?

What kind of side effects did you experience?
How long have you been on the combo?
Any info would be helpful.

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Old 12-16-2010, 05:43 AM   #2
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Location: Morris, IL
Posts: 3,507
Re: anyone on navelbine / herceptin?

I was on this combo for about 6 or 7 months....I felt it was extremely easy to do....I actually felt really well...some do get constipation from the Navelbine, so watch that.....hoping you feel as great as i did...no hair loss either!
"Be kinder than necessary, for everyone you meet
is fighting some kind of battle."

Hugs & Blessings
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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Old 12-16-2010, 06:20 AM   #3
Lori R
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Location: Evergreen, Colorado
Posts: 454
Re: anyone on navelbine / herceptin?

I just finished 4 months of this combo. Based on last liver scan, it appears to have worked.

While some people have had severe bouts of constipation, I only had minor issues that drinking more water took care of. I did NOT lose my hair (yea!!). Early on, I felt very "fatigued" and due to low white blood cell counts, I was dose reduced which helped.

I would receive treatment on Friday and would feel a little emotional on Sundays. Nothing horrible, just kinda blue.

All in all...not bad. Worked, Traveled (a lot) etc. etc. during the entire time.
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
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
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
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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Old 12-17-2010, 09:02 AM   #4
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Re: anyone on navelbine / herceptin?

I have been on Herceptin and Navelbine for over 3 years. Biggest side effect for me was low white counts so I get Neupogen and Neulasta shots afterwards. I get the Navelbine 3 weeks on/1 week off. Herceptin is also available in 1 week doses, so I get that with the Navelbine so that my "off" weeks are truly off (when I started with the 3 week doses of Herceptin, there were times when I'd have to still go in on my off week from Navelbine to get the Herceptin).

It is inconvenient to go in just about every week for the infusion, but with each scan showing that it has been workig well for me, I continue.

Best of luck to you - this is a very tolerable combo and my hair has completely grown back.
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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Old 12-17-2010, 09:56 AM   #5
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Re: anyone on navelbine / herceptin?

I was on navelbine and herceptin for 5 months, then on herceptin alone for 10 more months, in 2004 and 2005. I had no side effects that were that bad: no nausea, little weakness, hair difficult to manage but no loss, lost eyelashes and eyebrows, though. (Eyebrows have never grown back!) So when the her2 BC showed up again early this past summer, my oncologist put me on the same treatment. This time I had some bad reactions to the navelbine: Terrible roaring and pain in my ears (so bad I could hear my heart pounding and became almost deaf), nausea and vomitting, weakness, dizziness and fatigue and just feeling awful. I understand that these are not very common. In fact only one other person on this website mentioned the same side effects. My doctor did not want to stop the navelbine because the ca-27/29 tumor marker test showed the markers dropping, but decided to use just the herceptin to see if we could get by with that. Now the markers have started to rise again so we are now planning to start herceptin with a chemo, maybe gemzar instead of navelbine, after Christmas. I have heart problems and after the 15 months on the herceptin 5 years ago herceptin was stopped because my ejection fraction dropped to 30. There was some concern using it this time, but my ef is staying around 50 I can continue the herceptin as long as doesn't drop below that. I would say the navelbine should work great for you, as it did for me 5 years ago. Normally the side effects are mild. I only hope gemzar works for me now as well as navelbine did then. Good luck! TriciaK
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Old 12-18-2010, 01:02 AM   #6
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Location: Southern, CA
Posts: 2,511
Re: anyone on navelbine / herceptin?

I did 5 months of Navelbine/Herceptin. It is tolerable although like Tricia I had a few problems with it. The first 3 days after infusion I would wake up almost exactly at 4:00 AM with a rapid heart beat and could hear this loud pounding of my heart in my ears. My counts would tank quickly so I was on neupogen injections the first 3 days after each infusion of Navelbine. (So I didn't know if it was the Neupogen or Navelbine causing the problem?) Then when Tricia mentioned the same SE's I now think it was the Navelbine. I also had bad jaw pain which I see can be one of the rare side affects. (Lucky me.)

But I stuck it out for the five months and it did do a good job on my axilla nodes and bone mets remained stable on it. My hair thinned out quite a bit but I still had hair on my head. Major constipation problem...worse I have every experienced. But there are ways to manage that. Had I not had the rapid heart beat and loud pounding in my ears early in the morning...I'd say it's a really easy chemo regimen to be on. Most don't have the problems Tricia and I had. I felt pretty good all things considered on it. You asked about a port. I think you have to have a port for Navelbine or they won't give it to you. It's one chemo that is really hard on the veins. All and all its a good combo to be on and does a good job for most ppl.

DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 12-18-2010, 11:09 AM   #7
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Posts: 556
Re: anyone on navelbine / herceptin?

I was on Navelbine for three years taking it off and on. Each time I used it only for 4 cycles as I had complete response. But the 4th time I had progression while on the drug and had to go off. The side effects I had were low fever on the 2nd and 3rd day after infusion. And slight decrease in the blood counts but not that much. Otherwise it is a very tolerable and efficient drug.

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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herceptin, navelbine

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