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Old 06-24-2005, 02:34 AM   #1
*_Frank&Evelyn_*
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As Evelyn had her last, weekly Herceptin on April 14, it was decided (after second opinion) to have a break untill signs of progression would occur.
We were seeing the oncologist every 4 weeks kept a sharp eye on her skin rash. This was the only way to monitor progression (digital images every 3-4 weeks)
All other things like bloodworks and CA15.3 are just perfect.
Her skin looked stable all this time, but her arm was getting bigger for lymphoedema lately. So I made appointment with onc.
A CT-scan has been ordered for this coming Tuesday, June 28, which will have to point out if there is progression.
If so, she will have the option to take a combination therapy with Herceptin.
I know onc. would prefer Herceptin-Taxotere, as she responded well to that in earlier (pre-operative) treatment.
But I don't think Evelyn wants to go on this combo. Already having an arm like "Popeye", she doesn't want to lose her hair and nails also.

There would also be an option to take Herceptin-Navelbine. The adverse effects on this would be milder and not cause hairloss.
I would very much appriciate you experience and advise if you have taken this combo or anything else that is worth knowing, as you input helped us so much last time.

Everyday I'm visiting HER2support, reading you postings, sometimes replying.
But always thinking about you all and hoping that you'll find answers and doing better.

Frank
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Old 06-24-2005, 06:20 AM   #2
Celina
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Frank,
My sister took it for awhile...and did quite well on it. She had to stop when the neuropathy got quite bad...it's been a great combo for many.
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Old 06-24-2005, 03:36 PM   #3
Sandy H.
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I tried the Herceptin and Navelbine but it did not work for me. My hair got very thin the short time I was on it. I would rather not have any then have it so thin you can see the scalp. I did not like this combo the Navelbine gave me a terrible craving for sugar and I try to stay away from sugar. I used it for skin mets. There are many who have been on this combo and it works great for them. We are all so different sounds like it would be worth a try. Of course, being IBC me in a different catagory. hugs, Sandy
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Old 06-24-2005, 04:52 PM   #4
Lisa
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The Herceptin-Navelbine combo was effective in reducing my liver and bone mets. It, of course, did nothing for brain mets.

But while many women do well on it, the Navelbine hit me hard. I was nauseaous a lot AND I DID lose my hair. Taxol has been a breeze by comparison.

Love and light,

Lisa
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Old 06-24-2005, 07:52 PM   #5
Karen from RI
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I did Navelbine-Hercepin for 6 months and just Herceptin for 1 year for a recurrence to the lymph node in my collar bone. It worked wonders for me. It shrunk the tumor over 60% after the first treatment. I had a headache after the initial loading dose which gradually went away. No nausea or hair loss. Very tolerable for me. Good luck with your decision.
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Old 06-25-2005, 05:04 AM   #6
Isabelle
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I took Herceptin/Navelbine weekly for one year and did great on it. No hair loss and a normal life. All my bone met pain was gone within weeks. Tumor markers dropped like a stone to near normal. I now have no sign of the mets I had in my liver and lung. Just remnants of bone mets. My nails are definitely weaker but all looking normal. I feel strong and healthy.

Now I am on just herceptin alone. As Lisa mentioned in her post, the hercetpin does not work on preventing or treating brain mets. But I understand it works better to prevent them when given in combination with something like navelbine. So, ask for brain MRIs to monitor for that.


Isabelle, Redding, CT
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Old 06-25-2005, 09:23 AM   #7
Patty H
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My quality of life was great on herceptin &navelbine. It caused very little side effects. But it didn't work for me. When I did taxotere and carboplatin with herceptin it worked for awhile. But what I wanted to tell you about it, was my Dr. gave it to me weekly instead of every 3 weeks and I didn't loose my hair. So if taxotere works for her, it might be worth checking into how she gets it. Patty H
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Old 06-25-2005, 02:46 PM   #8
Ann F
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Hi,

I was on Herceptin and Navelbine in exactly a year ago in 2004 after A/T treatment, and did very well with basically no side effects. My hair continued to grow in and I had no nausea or flu like symptoms.

My onc is starting me on Herceptin alone again starting this Monday, June 27 every 3 weeks. Will let you all know how I do with this.

Love to all,

Ann
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Old 06-25-2005, 10:17 PM   #9
Lolly
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I was on Navelbine/Herceptin for both recurrences to lymph nodes, and it worked very well for me with minimal side effects. My treatments were weekly, the main concern was low blood counts resulting in anemia and risk of infection. I was given Kytril for anti-nausea, and Arenesp to help build red blood cells. The Arenesp made a huge difference for me in terms of energy level.
All in all, would take it again in a heartbeat. Best of luck in your decision,

<3,
Lolly
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Old 06-25-2005, 10:19 PM   #10
Lolly
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P.S., I did not lose my hair either time on the weekly regimen. It thinned somewhat, along with eyelashes and eyebrows, but not really noticeably.
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Old 06-28-2005, 11:42 AM   #11
al from canada
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Linda was on Herceptin + Navelbine for exactly 1 year, from Jan. 04 to Jan 05. She had to eventually stop because of neuropathy. She started this shortly after finishing her initial AC & T. She was bald at the time and her hair slowly grew back. She needed Neupogen support through-out and Arenesp twice. There was minimal side effects and the only pre-meds was Kytril.
Good Luck,
Al
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