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06-13-2007, 10:54 AM
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#1
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Senior Member
Join Date: Jul 2006
Location: Shingle Springs, CA - near Sacramento
Posts: 295
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LVEF drop - off herceptin - CoQ10 and?????
Hi Amazing Group,
Well, my lvef dropped again, this time 15 points, so no more herceptin for a month at least. I have been taking CoQ10 since years before this all happened and still take 200 a day. Anything else known out there to help with this heart mending?
The first time my lvef dropped 13 points, but bounced back up on the next test. This time it dropped from 67 to 52. :-(
I have had 8 months of treatment - I remember reading somewhere about a Finnish (?) study that showed 9 treatments were effective - anyone know about this or where it is at in study now?
thanks for you help, your input and I hope you are all having a wonderful day!
Donna
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06-13-2007, 12:48 PM
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#2
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Senior Member
Join Date: Jan 2007
Location: Massachusetts
Posts: 82
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Hi, Donna. I am also off Herceptin for 4 weeks. My LVEF dropped from 65 to 51%. I'm still getting Taxol (3 doses left), so I can't take CoQ 10 yet. I have an appointment with a cardiologist on Friday. My feet and ankles are very swollen. I'll be having a repeat MUGA scan in 4 weeks to see if I can resume the Herceptin.
There is a thread that was started on 8-30-06 about the FinHer study:
http://her2support.org/vbulletin/sho...ghlight=finher
__________________
IDC Stage IIIA
Diagnosed Nov 2006 (routine mammogram), age 51
Lumpectomy, lymph node dissection Dec 2006
3 cm tumor, 8 cancerous lymph nodes
Grade 3, ER/PR -, HER-2/neu +++ (by FISH, average 20 copies per cell)
A/C x 4, Taxol x 12, Herceptin x 47 weeks
35 radiation treatments
Completed treatment on April 3, 2008
Chest port removed October 2009
11 years since diagnosis NED
Last edited by Hazel Joyce; 06-13-2007 at 04:56 PM..
Reason: add link to thread
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06-13-2007, 03:08 PM
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#3
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Senior Member
Join Date: Oct 2005
Location: Bay City, MI
Posts: 73
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I had to quit herceptin due to low LVEF too, after 8 months, but I was told European studies showed 6months of herceptin is just as effective as 1 year. So I feel confident that I'm doing good. I feel great and my last muga showed much improvement!
Sue
__________________
Sue
IDC, Stage 1, Grade 3
Oncotype Dx Score 40
Her2+++ E+P+
Lumpectomy 5/05
Re-excision 6/05
4AC
33 rounds of radiation
1 year Herceptin (had to quit after 8 months, due to low muga scores)
Faslodex until 11-07
Hysterectomy with ovaries 11-07
Arimidex 12-07 switched to Aromasin 10-09
Quit Aromasin 11-09 due to joint pain
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06-13-2007, 03:10 PM
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#4
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Senior Member
Join Date: Oct 2005
Location: Bay City, MI
Posts: 73
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oh, my the way, I tried CoQ10, and I had terrible heartburn from it, and had to discontinue it..........oh well, I tried!
__________________
Sue
IDC, Stage 1, Grade 3
Oncotype Dx Score 40
Her2+++ E+P+
Lumpectomy 5/05
Re-excision 6/05
4AC
33 rounds of radiation
1 year Herceptin (had to quit after 8 months, due to low muga scores)
Faslodex until 11-07
Hysterectomy with ovaries 11-07
Arimidex 12-07 switched to Aromasin 10-09
Quit Aromasin 11-09 due to joint pain
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06-13-2007, 05:26 PM
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#5
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Senior Member
Join Date: Dec 2006
Location: Columbus, Ohio
Posts: 33
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My LVEF was 47 when I was required to take a break. Prior to that it was in the 60's. It went up to 54 and I was allow to complete my last 6 treatments.
I have another MUGA in 2 weeks to see if those treatments lowered my LVEF again.
Susan
__________________
dx IDC @ age 39 Feb '06
stage 2 er/pr-, her2+
neoadjuvant chemo 4 A/C completed April '06, 12 weekly taxol/herceptin completed 8/06, lumpectomy 8/15/06 NED!
33 rads completed 10/06
weekly herceptin thru May 2007 --Stopped herceptin 4/07 due to drop in LVEF. Started Herceptin again 5/07
Final Herceptin 6/12/07
Port Removed -8/13/07
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06-13-2007, 06:40 PM
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#6
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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To ALL:
Important
Try to schedule your MUGA or ECHO as close as possible PRIOR to your scheduled day of receiving Herceptin.
Try to maintain this schedule for all future tests.
When infused, Herceptin will cause an ejection factor drop in all patients, if you are on a triple dose, your drop will be even more dramatic.
By changing your test schedule:
1. Your heart will be at its strongest
2. There will be less fluctuation if done at the same time in the infusion cycle.
Regards
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
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