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Old 06-04-2004, 06:51 AM   #1
Linda in TX
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You might recall about 3 months ago a post from me all excited about being NED after 6 rounds of taxotere/herceptin. I did 3 months of solo herceptin every 3 weeks and just yesterday went for scans, tests. etc. I had been experiencing what I referred to as indigestion and stomach bloating and thought it was an effect of the herceptin....NOT! My original liver lesion was 7.5 cm and is now even larger! My onc at MD Anderson thinks the next best route to take is navalbine/herceptin combo, on a weekly basis. She also knows I can no longer handle the 5 hour (one way) drive to Houston and has suggested I start my treatments closer to home (Waco, TX. being the closest clinic). I am soooo very discouraged with all this and yes, frightened too. Has this happened to any of you? Any success stories with the navalbine/herceptin? What sort of side effects can I expect...I'm just starting to get my hair and eyelashes back from the taxotere Thanks for any help.

Linda
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Old 06-04-2004, 07:23 AM   #2
pattyz
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I didn't (and most don't) lose my hair on the N/H combo. It thinned but only so I noticed. I think you should be ok on that one.

I only took it for a spot on lung, pelvis, and mediastinal nodes. But it brought my tumor marker down from 220 to normal range in just two months and NED state. (except for brain ofcourse)

Fatigue was an issue nearing the end. Constipation. Short-lived sharp pains in trunk area that lasted two days for the first two treatments. A major jaw ache for 20 mins once, and one time for 10 mins. Pills for nausea worked fine for me. None.
I quiet the premed Decadron after I figured out I was getting it...maybe after the first or second time.

Response rate is as with the other combos. Some have great response others not. You can be in the first group )

hugs,
pattyz
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Old 06-04-2004, 09:18 AM   #3
Steph N
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Linda -
So sad to hear that your mean old liver tumor is back - I think it means that it was never completely gone the first time around.
Taxotere was a first line chemo for me after Adriamycin. It was very hard on me and did not do the job. I had mets to my liver and bones within 6 months of last treatment.

Went on a trial with navelbine, Taxol and Herceptin. Came through to a state of COMPLETE RESPONSE. Am still there after two years off chemo.
Have your med onc call my doctor, Robert Livingston at the Seattle Cancer Care Alliance, about this combination for hard-to-treat mets. They are having good success with it and are changing the trial to use Abraxane, the new, gentler form of Taxol.
You have to hit these kinds of persistant, fast growing tumors with everything you can possible tolerate. Kill those cells at every possible stage. Worked for me.
Keep us posted - there is a lot of reason for HOPE!
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Old 06-04-2004, 02:44 PM   #4
Jean
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Is novelbine/herceptin/taxol was your combo to knock down your tough ones in the lung? How long you have this combo to get to NED? Do you know if you used novelbine/herceptin first for 6 months then add taxol to the combo later? What are you on to keep you NED? Any detailed information would be appreciatted! You are very helpful to share you success story on this site. Thank you!
By the way, Taxatere/herceptin failed on me too after 6 months, and I am on Novelbine/herceptin for 4 months now, all small ones gone but the tough ones in the lung(2 spots). Novelbine is not bad on me, no hair loss, with nuepogen it is well tolerated. Worry about this combo will fail on me again. So thinking if add taxol to the combo would help or not! Will ask my onc when see him in early july. Thanks for any information!
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Old 06-04-2004, 11:07 PM   #5
Kitty
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Linda,

Taxol/carboplatin/herceptin worked for my livers mets. I have a friend whose liver mets were zapped with taxol and herceptin. I know my oncologist does not like to use taxotere and finds taxol better especially on the weekly regimens. I wonder if taxol would make a difference for you. I know carboplatin is highly synergistic with herceptin. I'm pretty sure Navelbine is listed as synergistic as well. I will look for my article on those and get back with you. By the way, this treatment is very easy to tolerate.
Kitty
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Old 06-04-2004, 11:53 PM   #6
Kay
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Linda we have talked before not sure if of the site.I have been fighting my cancer for 2 years.Seens I am more chemo resistance and the cancer seens to be refactory.I to just am getting my hair and now its going to be gone.I look at it this way better alive with no hair than not at all.Yes it's so sad the fear just alone can all most kill us.My doctor called M.D.Anderson they turn me down.Said he had done all they could.We also called others and I did not fit in with them.I feel my onc has done so well with me to this point.He is going to put me on Gemzar and Taxol and I will take a pill Thalidomide.I have looked it up and there is some good thing on it.I also have to add I know the long drive gets you.I live in Oklahoma and go to McKinney Texas its 21/2 hours there then same home.I guess I need to add I am all er pr @her2neg.I now this site is not where I should be but I like to come over as we are all in this war and it helps to be with others.Linda I go most of the time to a sister site Breast cancer Support.Hugs Kay
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Old 06-05-2004, 09:32 AM   #7
Steph N
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Jean asked:
"Is novelbine/herceptin/taxol was your combo to knock down your tough ones in the lung? How long you have this combo to get to NED? Do you know if you used novelbine/herceptin first for 6 months then add taxol to the combo later? What are you on to keep you NED? Any detailed information would be appreciatted! You are very helpful to share you success story on this site. Thank you!"

Here are some more specifics. First, my mets were to liver and bones, not lung. I took Taxol, Navelbine and Herceptin on a weekly basis for 27 treatments and this got me to NED. Each treatment involved all three drugs, given one at a time. Usually had the Herceptin last in order.
So, I was hitting those mets very hard with a three-drug combo the entire treatment time.
For the past 2 years I have only been taking Herceptin and Zometa (for my bones) every three weeks. Now we have cut the Zometa to every 6 weeks, as my last bone scan was clear as a bell. The Herceptin seems to be doing the job at keeping any mets from appearing so far.
I am hormone neg so can't take any of the hormone suppressor drugs.
Hope this clears up your questions.

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Old 06-06-2004, 07:19 AM   #8
SueF2
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I have mets to liver, bones, and now brain. Had Herceptin, with Navelbine, but ended up in the hospital after loading dose and one regular dose - heart problems. Severe shortness of breath. Have had WBR for brain and continue on Navelbine - no real side effects. Also getting chemo Methatrexate through reservoir in head.

Have read so much good about Herceptin. Darn!

Sue

Will get scan after two more Navelbines (once a week).
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Old 06-06-2004, 10:29 AM   #9
celina
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Sue,
This is the second time I've read about someone taking Methatrexate. How is this administered? Why aren't all patients with brain mets receiving this treatment?
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Old 06-07-2004, 03:24 AM   #10
SueF2
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I get this through the reservoir in my head. Painless! Don't know why all don't get it. Unfortunately, it hasn't improved my dizziness (not that it's supposed to!) I'm still working on that - going to ask onc and rad onc about CyberKnife, etc.
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Old 06-15-2004, 05:56 AM   #11
Lu Ann
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Have you thought about the "Cancer Treatment Centers of America" for a second opinion? I went there and met many people who were given hope amd treatment and are still alive today because of it.
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Old 06-15-2004, 05:59 AM   #12
luAnn
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I am also on weekly herceptin, taxol and carboplatin and it's side effects are very manageable. I was on cytoxin, methotrexate, and 5fu 13 years ago and this treatment is much more tolerable.
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