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Old 02-09-2015, 08:21 AM   #1
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Join Date: Jun 2014
Posts: 9
LVEF Question

My LVEF went from 62% in November to 56% now. Does this seem like a normal range of fluctuation? Just wondering how this compares to your experiences. I am on Herceptin every 3 weeks following 12 weeks of Taxol and Herceptin.
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Old 02-09-2015, 10:10 AM   #2
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Re: LVEF Question

Mine has been at 55% from the baseline test to now. I was told that was good and within normal range. Based on that, I would assume yours is okay at 56% but not sure what it means that it's gone down some. It may just be something to keep an eye on. How much longer do you have on Herceptin?
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Old 02-10-2015, 08:37 AM   #3
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Re: LVEF Question

Has anyone had their LVEF drop this much in 3 months time?
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Old 02-10-2015, 09:06 AM   #4
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Re: LVEF Question

Mine dropped from 59% baseline to 55 in 3 months. and I was perfectly fine. After that it dropped to 50% and then stabilized. I finished all treatments.
11/13 Dx IDC left breast
11/19/2013 Inflammatory Breast Cancer stage 3c grade 2 Er- Pr- her2+++
Node involvement suspected based on CT
12/13 port placed
12/13 neoadjuvant DD AC xs 4 rounds started
02/14 taxol/herceptin started every week xs 12 rounds
Herceptin for 1 year
BRCA1&2 negative
5/06/14 last round taxol/herceptin. Chemo done!!!
5/07/14 clear CT scan
6/11/14 Bilateral Mastectomy Done
6/15/14 8mm tumor post chemo. Removed by bmx
6/15/14 lymph nodes 0/9
6/15/14 officially Cancer Free
7/11/14 emergency surgery to left breast . Wound refused to heal and broke open. New TE placed
7/28/14 emergency medical procedure now to right breast( post op 6 weeks mastectomy ) wound opens.
8/25/14 - 10/07/14 Radiation
11/24/14 CT of Brain clear
01/23/15 One year Herceptin Complete
02/04/15 Diep done
5/01/15 1 year Ct scan- mass in thymus
6/23/15 repeat CT mass in thymus still present
6/30/15 biopsy thymus 7/03/15 mass Benign! Diagnoses Thymic hyperplasia rebound ( chemo at fault, no long term health effects)
7/08/15 phase 2 diep
11/23/15 phase 2b ( reconstructive surgery with lipo)
03/05/18 Vinnie Myer 3 D nipple tattoos complete.
11/19/2018 5 years since Dx of IBC stage 3c remain NED.
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Old 02-10-2015, 10:46 AM   #5
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Re: LVEF Question

I was similar to "nurse". Started at 65, ended at 50. Freaked out when it went to 50 and my oncologist just told me to calm down. Didn't have an echo after Herceptin - no need to. I did buy COQ10 as a supplement but never took a pill
March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 02-10-2015, 12:35 PM   #6
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Re: LVEF Question

I've been on Herceptin for almost 5 years. My EF fluctuates. Above 50% is good. One time it dropped 10% so they had me skip a treatment and repeat echo and it came back up.
12/2006 right lumpectomy - HER2-Stage 1
A/C x 4
Herceptin - one year
6/2010 - Stage 4 - lung and skin mets
Lung resection
TCH x 6
12/2010 - right mastectomy
On Herceptin
Scans every six months
11/2013 - stable continue to watch spot on lung
Continue on Herceptin
6/2016 - 6 years Stage 4 - stable - continue Herceptin
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Old 02-12-2015, 08:06 AM   #7
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Re: LVEF Question

I talked with my doctor last night and because EF measurement is not that precise he said not to worry. However, I've been having problems with breathing on and off lately. My friend noticed it seems to happen after my Herceptin treatments and lasts a few days. Each time it comes back it seems to get worse. He ordered a diagnostic echo immediately following my next treatment to see if there is any correlation to my symptoms.
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Old 10-20-2016, 03:44 AM   #8
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Posts: 36
Re: LVEF Question

I had a MUGA scan done before TCHP and one when the six cycles were done: No dicernible change. Since I am physically active and think I would notice if the left ventricular output would get low, I the felt comfortable with the concologist saying: Under these circumstances a check every halb year should suffice.
So yesterday i got the last dose of herceptin and he then - for no reason I could see - suggested for me to see a cardiologist.
I just nodded like I tend to do with doctors, but once I had some time to think about it, I feel this is just a nuisance. All I could find is the neccessity of frequent testing while in treatment, to be able to stop in time before it does get serious.
But that time is past and I would just get a status report without consequence.

I don't think there is damage, but if there is it would sort itself out, right? And if it doesn't they can't do anything about it anyway. So why bother?

Do I miss anything? Can anyone think of a reason why I would have myself be prodded by yet another doctor?
Dx 9/17/2015, IDC/Paget's, Left, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ at age 57
Surgery 10/6/2015 Lymph node removal: Sentinel
start 10/19/2015 Carboplatin (Paraplatin), Taxotere (docetaxel)
Targeted Therapy start 10/19/2015 Herceptin (trastuzumab), Perjeta (pertuzumab)
Surgery 02/23/2016 MX Left, PMX Right
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Old 10-20-2016, 04:27 AM   #9
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Posts: 568
Re: LVEF Question

You would not necessarily notice an issue so don't rely on symptoms. As long as you are having regular ECHO or MUGA during treatment and at the end of treatment and they are normal and not declining, a cardiologist isn't necessary. That said, my MUGA dropped significantly after treatment from early stage and it was only seen because I developed MBC and had a MUGA before restarting Herceptin, an 18 month gap. Damage can improve after it's been done. There are drugs you can be given, yes there is something they can do.

Whether you see a cardiologist or not is up to you but it doesn't hurt anything to have an evaluation by one. It's not like you will need to go for regular evaluations unless you develop an issue.
Tracy Arcari
11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%)
HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!
2/5/18 CT & BS = STABLE

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Old 10-21-2016, 10:44 PM   #10
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Posts: 36
Re: LVEF Question

Thank you for answering.
In germany all oncologists have a second field of experience. My first one was a cardiologist and did the MUGA scans himself. A reference before chemo, a check-up after chemo. I left there even though I thought he knew what he was doing because he gave me essential information and truths only in little bits and mostly when I had found them myself and just asked for confirmation. "Don't read so much on the internet!" When I got angry about this he offered drugs so I could calm down.

Well, I found the other one was not really different, he just took more time to answer if I had questions and he does do me the courtesy of assuming I have a working brain. I guess that is about as much as you can expect, being a production-line-early-stage-bc-patient. But: He is a hematologist and needs to send me to a specialist he works with if he wants information about my heart's condition. Yet another uncaring stranger. And I'd need to go to my former oncologist to get the reference scans. All this when I thought I might now have a chance of never ever having to see any of them again.
Dx 9/17/2015, IDC/Paget's, Left, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ at age 57
Surgery 10/6/2015 Lymph node removal: Sentinel
start 10/19/2015 Carboplatin (Paraplatin), Taxotere (docetaxel)
Targeted Therapy start 10/19/2015 Herceptin (trastuzumab), Perjeta (pertuzumab)
Surgery 02/23/2016 MX Left, PMX Right
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