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09-12-2008, 12:12 PM
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#1
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Senior Member
Join Date: Nov 2006
Location: Bakersfield, CA
Posts: 66
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Question on Nevalbine
Hi
I don't post very often, but I read a lot. I have just recently been back on the boards - computer down and have been in and out of the hospital 3 times since last November due to mets.
Background
DX with IIIb Invasive Ductal Carcinoma - lumpectomy followed a week later by masectomy - 23 of29 lymph nodes involved. 4 weeks of A/C followed by 4 weeks of Taxol. Started Tamoxifen but stopped - not working. Started Herceptin. In Nov 2006 PET scan showed liver mets. Started back on Taxol. Finished Taxol and stayed on Herceptin. In May/June 2007 started having pain in my left groin area and low back. Finally in July/August my primary doctor sent me for xrays and CT scans - showed bulging discs and that my coccyx was offline. They sent me to a pain management doctor and we discussed putting in a pump, but that kind of scared me because he said if I happened to have a tumor there and he hit it I could bleed out! So I decided that the pain wasn't that bad and I would handle it with pills. In November I started getting worse until one day I couldn't walk. I ended up in the hospital for 4 weeks. Prior to this we were going to start me on Tykerb/Xeloda but put that on hold while in the hospital. They did MRIs and CT scans and discovered a tumor on my lumbar that was effecting my sciatia. I had radiation for 2 weeks and was able to start walking again. I was able to go home the week before Christmas. On New Years eve I was sitting down and couldn't get up again. I went to the emergency room and was admitted to the hospital again. This time I was there for almost 8 weeks. While there this time we started the Tykerb/Xeloda and also found another tumor on the sacrum and directly behind that on my spine. More radiation. I was released on Valentines Day. I wasn't completely done with radiation so I had to finish from home. They sent me home with Hospice/Home health to manage my pain and help me shower and adjust. I started feeling a lot better and was getting out and going places. We took the kids to Las Vegas in July and had a great time. When we got home my right shoulder started hurting and I thought I had just slept wrong. It got worse and worse until I couldn't move my arm. I must have been bad because my husband called an ambulance instead of taking me himself like he had before. Tests showed another tumor in the neck area and I was admitted to the hospital again. They were worried about fractures and made me wear a neck brace for 2 weeks. My onc decided to take me off of the Tykerb/Xeloda until after radiation. While in the hospital I had to have a pic line put in due to the fact that my port isn't working (first one quit working after 2 1/2 years and I had it replaced 2 times in 2 months and both malfunctioned!) I also had problems with my heart rate. While I was sleeping at night it would drop down into the 30s so I had to have a monitor on and they sent in a cardiologist and I had about 5 EKGS. They never did figure out why it was dropping and it got a little better. Now it is anywhere from 65-85. Anyway I went home after 2 weeks and finished radiation from home. My latest PET scan showed that the bones are much better - my rad onc is really impressed at how I respond to radiation. However, my liver is looking worse. I have been having a sharp pain on my right side under my ribs and my med onc said it is most likely the liver.
I am sorry about rambling - here is my question.
I am starting on Nevalbine on Monday. My onc wants me to get a pic line rather than replacing my port again. I was wondering what the side effects of the Nevalbine are. My nurse said we will need to watch the WBC and there would be nausea - but we will give anti-nausea meds. Will I lose my hair again? This would be the third time. I guess I will get a new wig if I do!
Thank you for your help. You are all so much more knowledgeable about all of this than I am.
Stephanie B.
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09-12-2008, 12:28 PM
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#2
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Hey Stephanie!
WOW!!!!!
Unbelieveable story!
As for the Navelbine, I took it with herceptin and found it to be rather easy. I started getting my hair back while on Navelbine/herceptin, so you may not lose your hair!
Best wishes for good results with lots of hair!
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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09-12-2008, 01:37 PM
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#3
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Stephanie
My friend took Navelbine and herceptin for a year...no hair loss and no nausea...but had slight issues with her white counts.
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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09-12-2008, 02:54 PM
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#4
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Sorry your battle is so hard!
Navelbine was a good drug for me. I think most of my side effects were caused by the Taxol I took along with the navelbine and Herceptin.
My question is: Why are you not on Zometa if you have so much trouble with recurrences in your bones??? If not Zometa, some other bone strengthener??
I am really glad you have managed to fight back each time. Shows a very strong spirit.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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09-12-2008, 05:53 PM
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#5
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Senior Member
Join Date: Apr 2008
Location: NY
Posts: 240
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Stephanie I just completed 4 months on Navelbine (I went every two weeks for Navelbine and Herceptin). The worst SE for me was diarrhea that lasted only about 4 hours the day of my infusions. My onc made me get a medi-port, but it was only used twice due to infection (after 2 months it was removed.) My infusion nurses were excellent - they prevented the burning pain in my arm by slowly dripping the Navelbine at the same time as a bag of saline. My hair thinned a little bit but I didn't go bald. My nails cracked somewhat - but I never felt nauseous so I didn't need any pre-meds. I think Navelbine and Herceptin together are really very doable - compared to stories I've read about other chemo's, Navelbine will seem a "walk in the park" for you.
__________________
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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09-12-2008, 06:24 PM
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#6
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Senior Member
Join Date: Sep 2005
Posts: 556
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Stephanie,
I was on Navelbine two times once for 2 months another for 3 months. It is an easy chemo, I didn't take any pre-meds and you won't loose hair. Counts may drop a little bit, but I did'nt need to use the neupogen for it. But I had to put port for taking it.
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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09-12-2008, 09:03 PM
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#7
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Senior Member
Join Date: Nov 2006
Location: Bakersfield, CA
Posts: 66
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Thank you for the responses. I feel a lot better about this now. I was having a "not again moment" the other day when I found out I was going to have to do chemo again. I would never think about giving up though. My kids (son 8, daughter 4) are what keep me going.
Thanks again
Stephanie
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09-13-2008, 08:30 AM
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#8
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Senior Member
Join Date: Oct 2006
Location: I live in Christmas, MI - located on the shores of Lake Superior.
Posts: 606
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I tolerated Navelbine very well and found it to be one of the easiest treatments to tolerate. I hope it works good and you can tolerate it well.
__________________
Barb
10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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09-13-2008, 12:20 PM
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#9
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Senior Member
Join Date: May 2006
Posts: 3,142
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Question on Navelbine
Sorry to hear about your ups and downs. Hang in there.
Regarding Navelbine. I took it with Herceptin for several years. No premeds !!! No hair loss. No nausea. Tiredness for 24-30 hours afterwards, but I was able to do basic things like meal prep. etc. I take prescribed supplements for my blood counts. No shots for that !!
I spent alot of time in the restroom the morning after for my weekly detox.
No major problems.
Take care.
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09-13-2008, 02:30 PM
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#10
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Senior Member
Join Date: Jun 2008
Location: NY
Posts: 81
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Stephanie, as i was reading your post i felt like i could really feel your pain. i started thinking of my moms ordeal last year with her spine met and how she also got to the point where she couldn't walk either. god i can't imagine how hard it was for your family. its great to hear radiation worked well for you though.
Nalvebine/herceptin was the first thing my mom used after being stage IV and she was able to use it for almost 2 years! her wbc counts were low but so were her tumor markers. i hope you have great success with it as well.
take care Stephanie!
__________________
Hi i'm Sue. I've been part of the her2support family since 08'. My amazing mother Hong was her 2 stage IV 9 years and bravely earned her wings, I still love this board and continue to her fight. Plz reach out if you want to connect:)
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09-15-2008, 08:47 AM
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#11
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Senior Member
Join Date: Nov 2006
Location: Bakersfield, CA
Posts: 66
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I start my treatment today. Wish me luck.
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09-15-2008, 04:19 PM
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#12
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Senior Member
Join Date: Apr 2008
Location: NY
Posts: 240
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Good luck Stephanie - I hope you tolerate the Navelbine well and that it kicks your BC's butt!
__________________
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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