Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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04-11-2008, 01:45 PM
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#1
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Senior Member
Join Date: Apr 2008
Location: NY
Posts: 240
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Hair loss with Herceptin & Navelbine??
Hi everyone - my oncologist is recommending that I start on a combo of Herceptin and Navelbine to reduce my recurrence rate 50% because of my Her2+ status. I've done tons of reading about Herceptin and it's side effects - my Muga score was 67% which I'm told is good, but I don't know much about Navelbine. I'll be getting both drugs together intravenously every other week. After 4 months, I'll continue with Herceptin for a year.
My onc says I won't lose my hair with Navelbine.......but I've read somewhere that some ladies did experienced thinning of their hair. I'm not sure when I'll be starting this treatment (because my abdomen still has an open incision) - but I'd like to be better prepared for side effects. So far, from what I read, Navelbine seems to cause quite a bit of stomach problems (my onc said to expect some constipation) - but I'm more worried that I'll wake up one day with all my hair on my pillow!
Has anyone had experience with these two drugs together? I appreciate your help!
__________________
xxoo
Kathy
2/5/08 - dx age 53, post-menopausal;
IDC Stage 1, Grade 1
ER+ 90% /PR+ 90% /Her2++++, BRAC1 & 2 neg
3/5/08 - mast with muscle-sparing free tram;
0/7 nodes clear; Stage 1 lymphedema in right arm
3/11/08 - MRSA infection in abdomen causes large hernia
4/11/08 - Oncotype DX score 22 (intermediate)
4/12/08 - Muga score 67%
4/23/08 - Chemo, Navelbine and Herceptin every 2 weeks
8/20/08 - Last Navelbine infusion! Yay!
1/22/09 - First mammo since dx - unaffected breast CLEAR!
1/30/09 - Second Muga score 63%
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04-11-2008, 04:08 PM
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#2
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Senior Member
Join Date: Sep 2005
Posts: 556
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I had Navelbine and Herceptin but I didn't have any hair thinning.
Julie
__________________
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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04-12-2008, 05:58 AM
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#3
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Kathy, I had H and N and found it to be super easy to do. A bit of huffing and puffing when I walked, but my hair started growing back with that combo. Everyone responds so differently, but for me it was a "come down" from all the others! I'll bet you'll do terrific! ma
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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04-12-2008, 01:33 PM
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#4
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Senior Member
Join Date: Apr 2008
Location: NY
Posts: 240
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Thanks Julie and Mary Anne - I really appreciate your sharing - it helps me so much!
__________________
xxoo
Kathy
2/5/08 - dx age 53, post-menopausal;
IDC Stage 1, Grade 1
ER+ 90% /PR+ 90% /Her2++++, BRAC1 & 2 neg
3/5/08 - mast with muscle-sparing free tram;
0/7 nodes clear; Stage 1 lymphedema in right arm
3/11/08 - MRSA infection in abdomen causes large hernia
4/11/08 - Oncotype DX score 22 (intermediate)
4/12/08 - Muga score 67%
4/23/08 - Chemo, Navelbine and Herceptin every 2 weeks
8/20/08 - Last Navelbine infusion! Yay!
1/22/09 - First mammo since dx - unaffected breast CLEAR!
1/30/09 - Second Muga score 63%
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04-12-2008, 01:41 PM
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#5
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Deceased
Join Date: Oct 2005
Location: Chadds Ford, Pa
Posts: 206
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Hi Kathy,
I just finished a 3 month stint with Herceptin and Navilbene and found it one of the easiest combos to tolerate. I did not lose hair but hair did seem to grow slower. The day after my infusion I was tired (it was my couch day) and I did get a little peripheral neuropathy in my feet (but I had some from previous chemos so I was primed for it). I treated the neuropathy with 50 mg of B6 daily and added L-glutamine powder 3 times a day when it flared up.
You should do well on this - good luck to you!
__________________
Donna
Diagnosed 2/04 - Invasive ductal - no clean margins
node negative - er+pr+, her2++
Mastectomy 4/04 - 4 rounds AC
9/05 - mets to liver treated with carbo/ixabipelone/herceptin
3/06 - complete remission
9/06 - new liver mets, starting Taxotere/Herceptin
1/07 -Liver mets stable, staying on Herceptin
5/07 - Liver, lung progression - starting T/X
12/07 - Liver, lung progression - starting weekly Navilbene/Herceptin
4/08 - Liver progression - started Abraxane, Carbo, Tykerb and Herceptin
7/08 - Liver Progression - started Gemzar, Avastin and Tykerb
10/08 - Liver progression - starting Doxil
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04-13-2008, 01:15 PM
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#6
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Senior Member
Join Date: Apr 2008
Location: NY
Posts: 240
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Thanks Donna - I appreciate your advice!
__________________
xxoo
Kathy
2/5/08 - dx age 53, post-menopausal;
IDC Stage 1, Grade 1
ER+ 90% /PR+ 90% /Her2++++, BRAC1 & 2 neg
3/5/08 - mast with muscle-sparing free tram;
0/7 nodes clear; Stage 1 lymphedema in right arm
3/11/08 - MRSA infection in abdomen causes large hernia
4/11/08 - Oncotype DX score 22 (intermediate)
4/12/08 - Muga score 67%
4/23/08 - Chemo, Navelbine and Herceptin every 2 weeks
8/20/08 - Last Navelbine infusion! Yay!
1/22/09 - First mammo since dx - unaffected breast CLEAR!
1/30/09 - Second Muga score 63%
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06-02-2008, 10:48 AM
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#7
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Senior Member
Join Date: May 2006
Posts: 3,142
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Herceptin and Navelbine
Hi,
I didn't loose my hair on Herceptin and Navelbine. I think some people have hair thinning though. I have long hair, but I think it grows slowly and I don't have to worry about shaving my legs. My main side effect from Navelbine and Herceptin is being very tired the next day. My naturopath said the original source of Navelbine was the periwinkle plant and American Indians used periwinkle plants as a sedative. My cousin, a drug research scientist said they couldn't take out the chemical component that makes people sleepy when they developed the drug for cancer treatment.
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06-05-2008, 04:32 AM
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#8
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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I similar experience to the others who posted. I was on H&N for 1 year. No hair loss (if there was thinning it was slight). I too was tired the day after treatment. Occasionally I would have a slight touch of nausea, but took a antinausea med & it was fine. I did have a drop in my white blood count while on it, but only once was it low enough to hold treatment of the navelbine. Overall very tolerable. You should do just fine on it.
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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06-05-2008, 04:13 PM
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#9
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Senior Member
Join Date: Apr 2008
Location: NY
Posts: 240
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Thanks Elaine and Pam - I appreciate your comments. I just had my fourth infusion yesterday and other than a bit of diarhea, felt fine. No hair loss at all! Unfortunately, they still couldn't use my chemo port because the incision is still red and not healed. But the nurse hung a bag of saline to flow while she gave me the Navelbine, so my arm doesn't hurt at all. Hopefully in two weeks they'll be able to use the port again.
__________________
xxoo
Kathy
2/5/08 - dx age 53, post-menopausal;
IDC Stage 1, Grade 1
ER+ 90% /PR+ 90% /Her2++++, BRAC1 & 2 neg
3/5/08 - mast with muscle-sparing free tram;
0/7 nodes clear; Stage 1 lymphedema in right arm
3/11/08 - MRSA infection in abdomen causes large hernia
4/11/08 - Oncotype DX score 22 (intermediate)
4/12/08 - Muga score 67%
4/23/08 - Chemo, Navelbine and Herceptin every 2 weeks
8/20/08 - Last Navelbine infusion! Yay!
1/22/09 - First mammo since dx - unaffected breast CLEAR!
1/30/09 - Second Muga score 63%
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