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01-15-2007, 06:58 PM
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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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MUGA from 68 to 55, stop Herceptin?
Hi Amazing Group,
My first MUGA before AC regimen was 68, after AC but before Herceptin it fell only to 66, but now after Herceptin for 3 months it has dropped to 55. The way I read it, that is over 10 points so when I see my oncologist tomorrow I am assuming she will tell me to take a Herceptin vacation.
Is this correct?????? I don't want to end up with permanent heart damage, kind of defeats the purpose of getting healthy and cancer free. I really wasn't expecting this - it truly is asymptomatic - I have resumed my workout at the gym and was a little fatigued, but I thought it was due to the rads - only 3 left!
I would really appreciate any input on this I can get before I see the oncologist tomorrow - thanks!
Best to you all!
Donna
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01-15-2007, 07:59 PM
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#2
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Donna,
I started Herceptin with a LVEF of 74. After 7 treatments, it is down to 60, totally asymptomatic. After 5 treatments, it was down to 64, my onc ordered another MUGA and said as long as it came back "normal" he would keep going. I asked my internist about the scores, and he said I was still in the high normal range for a person my age. I value his opinion and felt better short term, but I, too have reservations about beating cancer yet winding up with a heart problem. CHF has an even worse prognosis than mbc, believe it or not. If he wants to keep going this week, I am asking about involving a cardiologist. I am willling to put faith in the FinnHer study and the positive results after 9 weeks of Herceptin at this point.
Good luck to you tommorrow.
Hopeful
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01-15-2007, 09:35 PM
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#3
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Senior Member
Join Date: Nov 2004
Location: Colorado
Posts: 131
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If this helps...
Lisa's onc stopped trusting MUGA's and started ordering EEG's. He says they are much more accurate.
Love and Light
Mel
__________________
Mel Gordon, Husband of Lisa Lowe - Queen of Love and Light and the bravest person I know!
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01-15-2007, 10:44 PM
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#4
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Donna,
I started in the high 60's also, and am now in the low 50's, but still considered "low/normal". If there's any question in your mind about your heart health while on Herceptin, I know some women who've posted here in the past reported that they saw a cardiologist, as Hopeful mentions. There are medications to help support your heart function while finishing your Herceptin, if that is your goal.
<3 Lolly
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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01-16-2007, 05:57 AM
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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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As a reminder, my first echo showed a low score due to the implant from reconstruction...a little contrast injected made the walls easier to visualize and my echo came up 13 points.
__________________
"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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01-17-2007, 09:27 AM
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#6
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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My onc stopped Herceptin when my muga dropped from 70 to 54. I remember him or his nurse saying something about 15 point drop is the stopping point, but I could have misheard them. I had had A/C, Taxol and 36 weeks of Herceptin by then. My oncologist confirmed that there is a study of 5000 women going on in Europe with the aim of proving that 6 months of Herceptin gives the same protection as 12 months for non metastic BC. I felt comfortable stopping at nine months. You might want to try to get in a few more treatments, but that's up to you and the doctor to decide.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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01-17-2007, 09:58 AM
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#7
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Senior Member
Join Date: Jul 2006
Location: Shingle Springs, CA - near Sacramento
Posts: 295
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thanks for all your help
MJo, you hit the number on the nose - my onc says it is a 15 point drop - although I am sure when I read the Herceptin information it said there a drop greater than 10. She is going to have me get MUGA reports every 6 weeks to monitor this drop - I have only been on herceptin for 3 months so I would rather keep going unless it gets worse.
Thanks so much once again for all the input!
Have a great day!
Donna
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01-17-2007, 11:09 AM
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#8
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Hope this link works
Here is the link to the letter on the Genetech website which describes cardiac monitoring procedures for patients on Herceptin: http://www.herceptin.com/herceptin/docs/DDL.pdf
Hopeful
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