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Old 07-06-2011, 08:17 PM   #1
7andcounting
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Experiences with Navelbine

Hi,

I just had my first treatment of Navelbine/ Herceptin last Thursday. I'm going in for my weekly treatment tomorrow.

I am wondering if anyone can share whether the side effects with Navelbine get progressivly worse over time. I will be having weekly treatment with one week off a month.

The worst side effect, so far, has been the chronic constipation...sorry...tmi!!! Can this be the only problem?? Can it be that I can actually enjoy life...ha, ha!

Just wondering......

Thanks for any insight. Thank you also to all of you who helped me sort through all my decision making last week. I found this website in the midst of a crazy time. I was progressing and did not know which option to take...out of 3 options. Thank you especially to Chris who set me straight that I was actually confusing 2 different drugs. I have peace about the option I chose. Some of these drug decisions are complicated---especially when they involve flying to get them...not easy decisions.

One surprising thing my oncologist told me was that if the Navelbine and Herceptin didn't work that he would then add back in Tykerb and we'd try all 3 drugs at once. He said there is now safety data out on this.

Thanks!

Joyce
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Old 07-06-2011, 09:12 PM   #2
Rich66
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Re: Experiences with Navelbine

if your onc is so inclined, might be wise to nudge him towards including Tykerb from the beginning.
http://her2support.org/vbulletin/showthread.php?t=41397
Seems to offer synergy and might prolong response. Sounds like he is considering it but just needs a little nudge.
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Old 07-06-2011, 11:49 PM   #3
Chelee
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Re: Experiences with Navelbine

Hi Joyce,
The first time I recurred I did Navelbine/Herceptin. The side affects for this combo is generally well tolerated by most. My worse problem was constipation...it was pretty bad. But found a fix for that. It was pretty hard on my counts so I had to do the Neupogen shots. I did feel a bit nauseated the first 3 or 4 days after infusion, but it never was so bad that I actually got sick or couldn't eat. I just made sure I took my nausea meds to be on the safe side. Other then that I still had a pretty good appetite. It didn't ruin the taste of my food like my first go around with "TCH". My hair did thin some, but not too bad. I did have some jaw pain at times which I read can be a rare side affect...but other then that it really was an easy chemo.

This combo has a good synergy together. There are so many women that have had such great responses with Navelbine/Herceptin. Some that are NED and have remained NED with N/H. (And yes...it is possible that you can actually enjoy life...so make some plans and go have a good time.)

Chelee
__________________
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 07-08-2011, 05:30 PM   #4
7andcounting
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Re: Experiences with Navelbine

Hello Rich and Chelee,

Thank you both for your thoughts. Reassuring, Chelee that you can feel good and go on with life. I'm sorta amazed. It's the daisy chain stringing of treatments..trying to stay alive....it's a great life...sun is shining and I'm feeling good. Hard to ask for more...although remission would feel so good rolling off the tongue... Thanks so much for your encouragment.

Rich, thank you for the good articles, I will give them to my onc. I'm so blessed to have found this group. It helps me to see that there are a lot of us that are in this for the long haul.

I ran into a friend today who told me she was celebrating her 4 years being cancer free, after doing her initial round of chemo and surgery. What does that feel like. It has been constant for 7 years. Remission would be so cool. Yet, life goes on and I get out of bed and I parent my 3 kids and I spend time with my great husband. Ohhhh, wishing Navelbine was my silver bullet. God knows. I just hope and pray. I'm having too much fun to let it all stop now!

Thanks everyone!

Joyce
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