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07-23-2012, 07:50 PM
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#1
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Member
Join Date: Jul 2009
Location: Longwood, Fl (burb of Orlando)
Posts: 9
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Eribulin/Halaven - tell me about it!
Stage IV, 14 years now. God's not done with me yet! Recent lung tumors unaffected by 3 mos Ixempra. Starting Eribulin this Wednesday. Can you share your experience, helpful hints? Can I work through it? Any info welcome  |
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07-23-2012, 08:47 PM
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#2
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Senior Member
Join Date: May 2011
Posts: 137
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Re: Eribulin/Halaven - tell me about it!
Hello,
Wow- 14 years is truly inspiring!
I found Halaven very tolerable and it shrunk my lung mets after a couple of treatments. My hair did thin quite a bit, but I didn't lose it all. I had a little fatigue for a couple of days. My counts became too low after I started the 5th round and I am on a chemo break right now- but I really thought it was doable!
__________________
3-16-11 dx IDC 4.4 cm tumor, right breast,HER-2 neu 3+++, Stage III
3-25-11 PET scan shows 3 mets to liver and 1 to spine, Stage IV
4-12-11 start clinical trial of TDM1 infusion 1x every 3 weeks.
6-14-11 CT scan after 3 cycles shows NO liver spots, reduced spinal met from 18mm to 13mm and right breast mass from 4.4 to 4.2 cm.
8-12-11 Mastectomy rt. breast.
10-11 scans reflect stable cancer
12-11 MRI reveals area of concern in brain, CT scan reveals 3mm spot on lung. Watch and wait and rescan in a few weeks. Round 13 TDM1 complete.
2-21-12 Scans reveal progression in lungs with 4 new small mets. Officially off tdm1. Start halaven and radiation for single brain met, 1 spot in spine.
3-13 stereotactic radiosurgery for single brain met.
5-31-12 Halaven stopped due to low blood counts. Start tamoxifen and cont. Herceptin 1x3 weeks.
7-11-12- brain mri shows shrinking brain met and no new lesions. Cont. Herceptin and Tamoxifen
10-2-12 Stable tumor markers. Continue Herceptin and Tamoxifen
4-9-13 progression in lymph node under arm and new lung spots. Stop Tamoxifen. Add Xeloda to Herceptin.
6-10-13 Stereotactic radiosurgery to two new brain mets. Stop Xeloda due to lung mets progression. begin Tykerb 7-2-13.
10-29-13 Begin radiation to my lungs and one lymph node under my arm. Stop Tykerb until completion and then recommence.
1-31-14 Progression in lungs. Oophorectomy performed.
2-18-14 Begin Arimidex and continue Herceptin
7-7-15 progression with spots on colon, in pelvic region, and in lungs. Begin Taxotere, Perjeta and Herceptin.
11-15 Switch to weekly Taxol, and continue with Perjeta and Herceptin.
12-23-16 PET scan shows Complete Response with no new spots. Continue on with TPH indefinitely.
3-16-16 Still no evidence of disease, break from Taxol. Continue on with Perjeta and Herceptin.
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07-23-2012, 08:59 PM
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#3
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Member
Join Date: Jul 2009
Location: Longwood, Fl (burb of Orlando)
Posts: 9
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Re: Eribulin/Halaven - tell me about it!
Thanks for the encouragement! Since the drug is given in 2 doses 1 week apart, then a week off, when did the "few days of fatigue" bother you. Am trying to figure out a work schedule, even though I know that everyone's different and I probably just need to wait and see. . . Hope that things continue in a positive direction for you!
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07-23-2012, 09:12 PM
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#4
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Senior Member
Join Date: May 2011
Posts: 137
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Re: Eribulin/Halaven - tell me about it!
The fatigue set in after the steroids wore off starting about two days after infusion- each of the two weeks. I had infusions on Tuesday and then I could feel the steroids start to wear off on Thursday and was usually starting to feel better by Saturday/Sunday. Yes- we are all different and I also had radiation to my spine and a spot in my head while still doing Halaven- but that could have contributed to some of my fatigue. Let us know how it goes!
__________________
3-16-11 dx IDC 4.4 cm tumor, right breast,HER-2 neu 3+++, Stage III
3-25-11 PET scan shows 3 mets to liver and 1 to spine, Stage IV
4-12-11 start clinical trial of TDM1 infusion 1x every 3 weeks.
6-14-11 CT scan after 3 cycles shows NO liver spots, reduced spinal met from 18mm to 13mm and right breast mass from 4.4 to 4.2 cm.
8-12-11 Mastectomy rt. breast.
10-11 scans reflect stable cancer
12-11 MRI reveals area of concern in brain, CT scan reveals 3mm spot on lung. Watch and wait and rescan in a few weeks. Round 13 TDM1 complete.
2-21-12 Scans reveal progression in lungs with 4 new small mets. Officially off tdm1. Start halaven and radiation for single brain met, 1 spot in spine.
3-13 stereotactic radiosurgery for single brain met.
5-31-12 Halaven stopped due to low blood counts. Start tamoxifen and cont. Herceptin 1x3 weeks.
7-11-12- brain mri shows shrinking brain met and no new lesions. Cont. Herceptin and Tamoxifen
10-2-12 Stable tumor markers. Continue Herceptin and Tamoxifen
4-9-13 progression in lymph node under arm and new lung spots. Stop Tamoxifen. Add Xeloda to Herceptin.
6-10-13 Stereotactic radiosurgery to two new brain mets. Stop Xeloda due to lung mets progression. begin Tykerb 7-2-13.
10-29-13 Begin radiation to my lungs and one lymph node under my arm. Stop Tykerb until completion and then recommence.
1-31-14 Progression in lungs. Oophorectomy performed.
2-18-14 Begin Arimidex and continue Herceptin
7-7-15 progression with spots on colon, in pelvic region, and in lungs. Begin Taxotere, Perjeta and Herceptin.
11-15 Switch to weekly Taxol, and continue with Perjeta and Herceptin.
12-23-16 PET scan shows Complete Response with no new spots. Continue on with TPH indefinitely.
3-16-16 Still no evidence of disease, break from Taxol. Continue on with Perjeta and Herceptin.
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07-24-2012, 12:29 PM
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#5
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Re: Eribulin/Halaven - tell me about it!
14 yrs...wow!!! That is something I strive for...I was on Eribulen for about 7 months....I was the first to get it at my cancer center in Chicago. I was tired after the first dose, but the mets on my neck literally melted away before my eyes, and started doing so almost immediately. I found it very easy to take, no premeds, no nausea, no problems with my counts, but some hair loss....I wish it would have worked forever, it was my most successful treatment so far. Hoping it works magic for you too! I carried on life as usual while on it.
__________________
"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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07-24-2012, 08:11 PM
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#6
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Member
Join Date: Jul 2009
Location: Longwood, Fl (burb of Orlando)
Posts: 9
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Re: Eribulin/Halaven - tell me about it!
Looks like we both have long "rap sheets". I just haven't kept mine up. God is good to give us life in spite of the chemo. It's an ongoing battle, isn't it? Sorry to see your latest progression, but hope that the "new Herceptin" will be your next miracle. Am interested in how you accessed the drug as I can only find it for 1st time use. Anyway, I just failed Ixempra after 3 months, and will start the Halaven tomorrow. Thanks for the encouragement of your experience on it. Am so hoping to go back to work on it, as my energy has returned. Keep looking up!
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07-25-2012, 05:42 AM
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#7
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Senior Member
Join Date: Dec 2006
Posts: 415
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Re: Eribulin/Halaven - tell me about it!
14 years - Amazing!
I've just reached my 10 year mark Stage IV a couple of months ago. Big Pharma needs to keep developing those drugs to keep us kicking around for many more years to come!
I was on Halaven for ~18weeks last August. I found it pretty tolerable, but my counts took a hit, chronically anemic & neutropenic, and I did lose my hair. All of it  I'd had 5yr reprieve from baldness, actually NOT losing my hair on Ixempra, but for the 3rd time on Halaven. My hair did start to grow back while I was still on treatment, but unfortunately I progressed on Halaven after initially responding.
I think you'll be able to work while doing Halaven, but as you know, everyone is different. I had a horrendous time on Ixempra & was bed-ridden for 4 months the first time by my treatment.
When you have a moment, will you share your dx & tx history with us?
Best of luck starting Halaven - hope you tolerate it well and even more so, hope that it knocks this disease way back!
Keep the Faith~
Jml |
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