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Old 11-10-2008, 10:33 AM   #1
koolmom
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Location: Asheville, North Carolina
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Question Herceptin/Navelbine

Wanted to pick your guys brains. I have been on this combination about 2 1/2 years ago and did fine. I was then on Tykerb/Xeloda, but have recently been taken off and put back on Herceptin/Navelbine again. AFter 2 treatments, my blood counts dropped and couldn't receive my 3rd round of Navelbine. I seem to be having some hair loss and I have terrible neuropathy. I don't remember having any of this during my first treatment with these drugs.

Has anyone heard of these side effects? My oncologist is cutting my dose of Navelbine back a little to see if that helps.
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Old 11-11-2008, 06:33 AM   #2
D.W.
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navelbine/herceptin

Hi Koolmom,

I was taken off of tykerb/xeloda and now am on navelbine and herceptin. Yes, I've had the white blood cell counts too low and had to miss a dose of navelbine. My hemoglobin levels are low too and I may have to have an iron treatment to restore it. I haven't had problems with neuropathy yet--but was warned of that side effect. When I was on the heavy chemo drugs in 2006 I had neuropathy and the onc. gave me Lyrica for it. It helped, but my insurance won't pay very much for it because it is too new. So Lyrica may help you.

As to hair loss, I can't help you on that one because my hair fell out in April after whole brain radiation and is slowly coming back.

I hope that is somewhat helpful for you. Hang in there!

D.W.
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Old 11-11-2008, 07:29 AM   #3
koolmom
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D.W.
I'm glad to have someone to talk to about this. I was so bummed about having to go off Tykerb/Xeloda. It was so easy! I also seem to get nauseated after my Herceptin/Navelbine. By Sunday the nausea is gone. I'm glad your hair is coming back (even if it is slow)! I will pray for you! What is your story. I see somepeople's cancer story at the end of their post, but I don't know how to post mine either.
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Old 11-11-2008, 09:29 AM   #4
D.W.
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hi koolmom

When my onc. nurse pushes the navelbine I get an anti-nausea drug in the i.v. Do they give you some? I have not had any nausea.

The onc. took me off of tykerb/xeloda because I got the hand/foot syndrome real bad. My toes still bleed and hurt after being off the meds for about two months.

I know how to post my history; I'm just lazy! I need to do that.
----------------------------------------------------------
diagnosed 4/06 her 2nu breast cancer
4/06-7/06 taxol, carboplatin, herceptin.
8/06 mastectomy
28 radiation treatments
08/06-12/06 taxotere
4/06-4/08 herceptin
4/08 mets in brain and spine and hip
4/08 whole brain radiation 10 treatments
5/08-6/08 spinal radiation 12 treatments
4/08-8/08 tykerb/xeloda
9/08 to present navelbine/herceptin
10/08 MRI shows brain mets almost gone!
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Old 11-11-2008, 09:33 AM   #5
D.W.
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signature

Hi Koolmom,

Click on User CP at the yellow bar on top, then click on edit signature and it will give you a screen to type your history.

D.W.
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Old 11-11-2008, 09:39 AM   #6
koolmom
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Red face Thanks

D.W. Thanks for the info. I was dx in March 2004 w/7 nodes positive. Did the AC/Taxol/Cytoxin. (Before Herceptin was released). 32 rad treatments. Next year had cervical nodes positive/took out took Navelbine Herceptin. Went off Navelbine, just herceptin, the next year had 1 more cervical node positive. Took that out also, had radiation to the neck area and start Tykerb/Xeloda (full strength dose). My doctor was amazed that I never got the hand/food syndrome. She said about 80% of people get it. I was on that for 18 months. Now small amount of activity showing up in lymph nodes in chest area. Not very large on CT. So they switched me thinking the ugly beast may be trying to rear its head again.

They do give me a nausea med. Kytril. I will make sure they are still giving it to me. My 1st Herceptin treatment this time I had a horrible reaction. Nausea, couldn't breath, muscles went into rigor (I was bouncing around like a dying fish) - very scary. That was with premedicating with Benadryl/Tylenol, etc. So now, I get IV Benadryl (and still Kytril, I think). I'll have to ask.

Are you doing once a week or every three weeks?

They have cut my dose of Navelbine due to the neuropathy. After just 2 treatments, my fingers feel like "pins and needles". They said if they kept the dose up, I could have a permant disability. They said Lyrica would help the symptoms, but mask the problem.
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Old 11-11-2008, 09:42 AM   #7
koolmom
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Posting profile

D.W. I clicked on User CP, but I don't see box to post my history. I must have a dumb streak going on today!
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Old 11-11-2008, 01:21 PM   #8
D.W.
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Koolmom,

Wow--that must have been scary reacting to the herceptin.

I believe that I get navelbine two weeks and than I am off one week. Herceptin every week.

So you are Koolmom, how many kids do you have? We have two boys fifteen and eight years old.

Take care!

D.W.
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Old 11-11-2008, 02:26 PM   #9
koolmom
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I only have one daughter - she is turning 18 tomorrow. My prayer was to get her through highschool (which I have almost done). My next prayer is to get her through college.

What area do you live in? I live near Asheville in North Carolina.
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Old 11-11-2008, 04:32 PM   #10
D.W.
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I live in Indianapolis; about 15 minutes from the famous race track.

So glad to hear that you've almost gotten your daughter through high school. We will agree in prayer for you to get her through college and beyond!

D.W.
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