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Old 07-10-2012, 12:13 PM   #1
Sheila
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LVEF false Readings & Protecting your heart New Info
After seeing the cardiologist today in Chicago, I found out that most cardiologists do not rely on LVEF readings from Muga Scans, and prefer a trans thoracic echocardiogram for accuracy. Seems the Muga requirement was a past Practice from ECOG.. And results show that the echo is more accurate depending on the uptake of the tagging isotopes used in the Muga. This explains my Muga (with poor outlines of the heart visualized) being a 19 score whereas my trans thoracic echo with contrast injected showed a LVEF of 40-45%...substantial difference.

Also, cardiologists have found that prescribing Coreg(carvedilol) a beta blocker, BEFORE and during the administration of cardio toxic drugs such as Herceptin, Pertuzamab, Anthracyclines etc, can protect the heart from ever being damaged from these drugs. They are attempting to spread the word to oncologists to initiate this regimen on patients who will be at risk.
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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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Old 07-10-2012, 08:40 PM   #2
JennyB
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Re: LVEF false Readings & Protecting your heart New Info
Sheila thats fantastic news about your LVEF and thank you for the info re te beta blockers - I struggled towards the end of my year with herceptin so may need some help if I ever need it again.

Hope the Perjeta is working for you

Jenny
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Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy

Praying the Herceptin is as good as its hype!!
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Old 07-10-2012, 09:47 PM   #3
SherO
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Red face Re: LVEF false Readings & Protecting your heart New Info
Thanks Sheila for this information about Coreg. I am going to ask my onc about it. I'm on herceptin now for a local recurrence.
Previously I was denied herceptin because my LVEF went down to 30 after chemo with adriamycin. This was LVEF on both Muga and echo.
Currently I am monitored every three months on herceptin by Muga only. I'm staying in the 40s, fortunately. I'm having chest wall rads on left side too.
I hope you are well....
Sheree
P.s. I'm new to this site so have not posted my data or figured it out!
I'm in la grange, Illinois.
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Old 07-11-2012, 03:14 AM   #4
Ellie F
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Re: LVEF false Readings & Protecting your heart New Info
Thanks Sheila for posting. This is very good news for the future and those struggling with low readings
Ellie
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Old 07-11-2012, 11:28 AM   #5
tricia keegan
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Re: LVEF false Readings & Protecting your heart New Info
Thanks for that info Sheila and will pass it on to a friend on Herceptin right now
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Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 07-11-2012, 12:07 PM   #6
karen z
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Re: LVEF false Readings & Protecting your heart New Info
Thanks very much for this important post.
Take good care ! ! !
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Old 07-11-2012, 03:49 PM   #7
hutchibk
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Re: LVEF false Readings & Protecting your heart New Info
Coreg (Beta blocker) is GREAT for those who can take it. I can't take it because I have naturally low blood pressure and we with low BP are not allowed to take a Beta blocker... often Lisinopril (ACE inhibitor) is also prescribed with Coreg. I can take Lisinopril. I now get an Echo. My cardiologist prefers that.

Oh, and Yay!
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Brenda

 NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

 "I would rather be anecdotally alive than statistically dead."
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