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Old 03-25-2017, 04:38 AM   #1
Bunty
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Posts: 473
Heart Issues with Long Term Herceptin Use

I'm interested to know if anyone here has had decreased EF scores after many years on Herceptin - this is a question for the Metastatic amongst us. I would love to hear your stories and outcome.

Back in early Feb my annual heart scan showed an EF that had dropped to 45% (it had been sitting comfortably around 53% for a number of years). I had been on Herceptin continuously for 9 years (with a few bouts of chemo in there). My onc immediately stopped Herceptin, and commenced an ACE inhibitor with the plan that a Beta Blocker would be introduced after one week. I did not tolerate the ACE Inhibitor (I experienced a quite common side effect of a gut-wrenching cough). So just went on the Beta Blocker (Bisoprolol), which has increased now to 5mg per day. After a couple of weeks on the Bisoprolol another scan of the heart muscle was done, and it only had moved to 46% and still showed no change on the damage. Because I had a good year last year my onc was comfortable taking me off Herceptin, but I'm getting nervous (and I think he is too). So I'm seeing a Cardiologist this week. Who knows if the Herceptin still works anyway, but I feel it's my lifeline, and if I can't get this corrected, it also means I can't have other drugs such as TDM-1. My onc is also worried if it might be late onset heart muscle deterioriation because of A/C I had back in 2001. Apparently cases are presenting many years on.

So interested to hear of any experiences out there - the good and the bad!

Cheers Marie
__________________
dx Dec 2000 dcis 2.5cm clear sentinel node, ER/PR- Her-2+
lumpectomy, 6 cycles AC, 6 weeks rads
October 2007 three x 2.5cm lung mets. 8 months Taxol, started Herceptin and continue. Significant reduction in lung mets.
June 2011 3cm x 4cm liver tumour. Started Abraxane and continue with Herceptin.
November 2011. Finished with Abraxane, continue with just Herceptin. Liver tumour now reduced to 15mm x 12mm. Lung tumour now 10mm x 0.5mm
February 2012. Scans show everything stable, and brain scan clear.
July 2012. PET/CT scans show I'm in remission - no active cancer!
]Dec CT brain cllear, lungs stable, liver tumour has increased to 20mm. PET scans showed active liver met and active lung thinglet, and possible bone met.
Jan 2013 recommence Abraxane, continue with Herceptin.
June 2013 finish Cycle 6 Abraxane, continue with Herceptin. 30% reduction in liver tumour, everything stable.
December 2013. CA15-3 on rise.
February 2014. PET and CT scans show single liver tumour has increased to 35mm. No other activity.
March 2014. Planned for SBRT for liver met, but couldn't have treatment as tumour too close to bowel. Continue Herceptin.
April 2014. Surgeon advises that I am a good candidate for liver resection, so will have operation early May (after camping holiday). Tumour now 44mm x 29mm.
May 7, 2014. Two liver tumours surgically removed. Third of liver removed, and gall bladder. Am I NED?May 2014. Pathology of tumour shows it's now ER+ (95% staining).
June 2014. CA15-3 has decreased to 18 from a pre-surgery reading of 59!
June 2014. Started Femara, continue with Herceptin.
July 2014. Stop Femara due to severe Osteoporosis. Commence Tamoxifen, continue Herceptin. Waiting to hear if I can have Aclasta infusion.
August 2014. CA15-3 has decreased further to 12 - YAY!
October 2014. Aclasta infusion for Osteoporosis. November 2014, CA15-3 decreased to 11. Scans of liver all clear, something new showing up on lung, but just watching at the moment.
November 2015. Started SBRT on solitary lung met.
November 2015. Bone density scan showed very good improvement so back on Femara - yay!
December 2016. 6 treatments of SBRT radiation on lung. Seems to have had some effect.
June 2016. CA15-3 still stable and low at 9.
June 2016. Started subcutaneous Herceptin replacing infusion.
Jan 2017. LVEF dropped to 46%. Stopped Herceptin.
Feb 2017. Started ACE Inhibitor and BETA Blocker. Still off Herceptin.
Aug 2017. Two new mets - Portacaval lymph node and mediastinal lymph node.
Aug 2017. Blood tests show extremely elevated liver enzyme levels. Many tests to investigate.
Sept 2017. Portacaval lymph node blocking liver bile duct causing liver enzyme and Bilirubin problems.
Oct 2017. 8cm stent inserted into liver bile duct. Procedure caused pancreatitis, and hospitalised for 3 days. Liver enzymes improving rapidly.
Nov 2017. Commenced 4 weeks of radiation on Portacaval lymph node. 5 week break before chemo.
Jan 2018. CT scan. 11 new small liver mets, and new superclavical lymph node med.
Jan 2018. Start Kadcyla. CA15-3 426.
Apr 2018. First scans since starting Kadcyla. All tumours reducing. CA15-3 dropped to 30 from 426.
Dec 2019. Still on Kadcyla, but two small brain mets have been treated in the past month with SRS. CA15-3 stable for 12 months at 11.
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Old 03-25-2017, 07:03 AM   #2
Mtngrl
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Re: Heart Issues with Long Term Herceptin Use

Marie,

I'm sorry to hear you're experiencing heart problems. It would be scary to drop Herceptin.

I have not had reduced EF. In fact mine is high enough (and it increased between echocardiograms) to have me wondering if EF can become too high--possibly the opposite of your problem, and I have no idea if Herceptin or something else cancer-related or treatment-related might be to blame.

I hope they get your situation sorted out soon.

Amy
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Old 03-25-2017, 07:14 AM   #3
sarah
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Re: Heart Issues with Long Term Herceptin Use

Hello Marie,
I was on Herceptin for 6 years and my heart stayed steadily ok.
However, due to radiation, 9 years after the radiation I had a heart attack and it was found that an artery had collapsed - it was within the radiation tattoo and I was told that was the cause. It was not the left side of the heart but in the center of my chest. I now take Bisoprolol and have had a stent put in.
I assume you are also being followed by a heart specialist.
I don't really know if it helps or is it's good to take or not, but several people on the site take co-enzyme q10 for the heart and I did all through taking Herceptin and in fact I'm now taking it again. Perhaps you could ask the cardiologist if it would help or if it would be harmful? My cardiologist also has me on a pharmaceutical grade fish oil called Omocar.
Hope your heart gets back in shape and you can get back on Herceptin.
Hugs
Sarah
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Old 03-25-2017, 12:01 PM   #4
donocco
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Re: Heart Issues with Long Term Herceptin Use

Marie

Im sorry to hear the Bystolic wasnt as effective as planned. I can only say what I suggested before. Instead of an ACE Inhibitor like Benazepril you could take an Angiotensin-2 receptor blocker like Losartan. You could continue the Bisprolol with the Losartan (or Valsartan, Candesartan, whatever). These 2 classes of meds are commonly used to treat high blood pressure. With Losartan this type of cough is much less likely. Talk with the Cardiologist

Paul
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Old 03-25-2017, 01:28 PM   #5
Ceesun
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Re: Heart Issues with Long Term Herceptin Use

hmmm.....recently learned I have a heart murmur and wondering if its due to the radiation I had to lung or chest. So far no recommendation to cardiologist just adjustment of BP meds. Any thoughts? Cathy
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Old 03-25-2017, 03:57 PM   #6
Bunty
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Re: Heart Issues with Long Term Herceptin Use

Thanks for replies.... Sarah, I've been taking Co-Q10 every day now for about 7 years (150mg), but have increased it to 300mg per day.

Paul, you have been at my onc appointments - your posts have been all read by my onc, and he said it's likely now when I see the Cardiologist this week, some of your suggestions will be taken up. (I think as an onc he was hesitant to go off 'protocol'??)

I also had radiation at original diagnosis in 2001, but at the end of 2015 I had SBRT on a pesky lung tumour, so I hope that hasn't had an impact (that tumour was in left upper lobe of lung).

Interested to hear any other experiences!

Cheers Marie
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Old 03-25-2017, 09:26 PM   #7
donocco
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Re: Heart Issues with Long Term Herceptin Use

Marie

As far as the Q10 goes there was an experiment in Denmark way back in the early 90s where 3 women taking a dose of Coenzyme Q10 390mg dailybecame free of bvreast cancer mets. Lower doses ddid not do this. I have doubts about this but with your docs approval it might be smart to raise the dose of Q10 to 400mg daily. Look at google and read about this old Danish study. Who knows?

Paul
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Old 03-26-2017, 01:41 PM   #8
jacqueline1102
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Re: Heart Issues with Long Term Herceptin Use

Hi Marie,

There is some research about the subcutaneous herceptin which indicated that three women in a very small sample study had died due to heart failure. When I spoke with my oncology team about the subcutaneous H they were not receptive based on this research. Subcut H is not available in the United States. It might be that you go back to Herceptin the original way through a port or your vein. It could be the delivery mechanism.

When I first started this mess, my EF dropped down to 53. It is now 70. The team asked what was I doing and working out three days a week has maybe toughened up the old heart as well as the COQ-10. Hope this helps.

Take good care,

Jackie
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10/11 IBC Stage IV; 1 liver met 4.6 cm.
10/11-2/12 TCH for 6 rounds
3/12 Right MRM
5/12-7/12 33 Radiation treatments
8/1/12 Started Perjeta along with the Herceptin
10/12 Scans said NED for first time
5/15 UWSeattle Vaccine Trial 3 months
12/16 Scans still show NED. Herceptin and Perjeta continue indef.
8/17 Taken off Perjeta;staying on Herceptin. Still NEAD.
3/18 Still NEAD
8/19 Now on Subcutaneous Herceptin
10/21 Remain on Subcutaneous Herceptin (Hylecta)
11/21 CT showed possible lung mets. Was told to wait and see until scan
1/22 CT shows continued growth
03/22 Lung Biopsy said sample was too small but nodules keep growing and IR is convinced that it is indeed cancer
04/22 Oncologist referred for consult for a transbronchial biopsy. This does not sound pleasant
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Old 03-27-2017, 07:13 AM   #9
Bunty
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Location: Sydney, Australia
Posts: 473
Re: Heart Issues with Long Term Herceptin Use

That's interesting Jackie. I just found that study online (HannaH), and four people died - three subcut, and one IV. However, the study interpretation was summarised as follows:

Interpretation
Subcutaneous trastuzumab, administered over about 5 min, has a pharmacokinetic profile and efficacy non-inferior to standard intravenous administration, with a similar safety profile to intravenous trastuzumab, and therefore offers a valid treatment alternative.

Having said that, I had a 'feeling' about the subcut. In all the years of having the IV I never had any side-effects, however, after the subcut, I had flu like symptoms for about 36 hours. So I have already informed my onc that I wish to go back on IV Herceptin, hopefully when my EF improves! And he agreed no problem at all. My team at the Cancer Centre have already informed Roche (?) here in Sydney of this happening to me on subcut, (but of course, it may not have had an impact).

Cheers Marie
__________________
dx Dec 2000 dcis 2.5cm clear sentinel node, ER/PR- Her-2+
lumpectomy, 6 cycles AC, 6 weeks rads
October 2007 three x 2.5cm lung mets. 8 months Taxol, started Herceptin and continue. Significant reduction in lung mets.
June 2011 3cm x 4cm liver tumour. Started Abraxane and continue with Herceptin.
November 2011. Finished with Abraxane, continue with just Herceptin. Liver tumour now reduced to 15mm x 12mm. Lung tumour now 10mm x 0.5mm
February 2012. Scans show everything stable, and brain scan clear.
July 2012. PET/CT scans show I'm in remission - no active cancer!
]Dec CT brain cllear, lungs stable, liver tumour has increased to 20mm. PET scans showed active liver met and active lung thinglet, and possible bone met.
Jan 2013 recommence Abraxane, continue with Herceptin.
June 2013 finish Cycle 6 Abraxane, continue with Herceptin. 30% reduction in liver tumour, everything stable.
December 2013. CA15-3 on rise.
February 2014. PET and CT scans show single liver tumour has increased to 35mm. No other activity.
March 2014. Planned for SBRT for liver met, but couldn't have treatment as tumour too close to bowel. Continue Herceptin.
April 2014. Surgeon advises that I am a good candidate for liver resection, so will have operation early May (after camping holiday). Tumour now 44mm x 29mm.
May 7, 2014. Two liver tumours surgically removed. Third of liver removed, and gall bladder. Am I NED?May 2014. Pathology of tumour shows it's now ER+ (95% staining).
June 2014. CA15-3 has decreased to 18 from a pre-surgery reading of 59!
June 2014. Started Femara, continue with Herceptin.
July 2014. Stop Femara due to severe Osteoporosis. Commence Tamoxifen, continue Herceptin. Waiting to hear if I can have Aclasta infusion.
August 2014. CA15-3 has decreased further to 12 - YAY!
October 2014. Aclasta infusion for Osteoporosis. November 2014, CA15-3 decreased to 11. Scans of liver all clear, something new showing up on lung, but just watching at the moment.
November 2015. Started SBRT on solitary lung met.
November 2015. Bone density scan showed very good improvement so back on Femara - yay!
December 2016. 6 treatments of SBRT radiation on lung. Seems to have had some effect.
June 2016. CA15-3 still stable and low at 9.
June 2016. Started subcutaneous Herceptin replacing infusion.
Jan 2017. LVEF dropped to 46%. Stopped Herceptin.
Feb 2017. Started ACE Inhibitor and BETA Blocker. Still off Herceptin.
Aug 2017. Two new mets - Portacaval lymph node and mediastinal lymph node.
Aug 2017. Blood tests show extremely elevated liver enzyme levels. Many tests to investigate.
Sept 2017. Portacaval lymph node blocking liver bile duct causing liver enzyme and Bilirubin problems.
Oct 2017. 8cm stent inserted into liver bile duct. Procedure caused pancreatitis, and hospitalised for 3 days. Liver enzymes improving rapidly.
Nov 2017. Commenced 4 weeks of radiation on Portacaval lymph node. 5 week break before chemo.
Jan 2018. CT scan. 11 new small liver mets, and new superclavical lymph node med.
Jan 2018. Start Kadcyla. CA15-3 426.
Apr 2018. First scans since starting Kadcyla. All tumours reducing. CA15-3 dropped to 30 from 426.
Dec 2019. Still on Kadcyla, but two small brain mets have been treated in the past month with SRS. CA15-3 stable for 12 months at 11.
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Old 04-03-2017, 12:08 PM   #10
kk1
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Join Date: Sep 2005
Posts: 182
Re: Heart Issues with Long Term Herceptin Use

Bunty;

I have been on Herceptin for 13 years without a problem until recently --- my last echo a few weeks ago suggested that I dropped LVEF about 10 points. I am normally in the mid 60% range.

They are not sure why....as you know is not typical to see a drop after so many years. Usually if you are going to have a problem it shows in the first few months.

I am still getting my IV Herceptin for now, I am still in the low 50%, and have a follow up echo next week....hopefully it will either be stable or returned to the high. We will see.
__________________
KK1
April 2004 de novo metastatic left breast 1.5cm her2++,er+/pr+ with 2 small liver mets
weekly taxotere,herceptin, xeloda
Sept 2004 NED-3 herceptin, zoladex,aromasin
Dec 2006 recurrence in liver
Feb. 2007 liver resection left lobe removed-herceptin, zoladex, switch to Arimidex
NED 16 months added zometa
May 2008 new lesion in liver 15mm Tykerb/Xeloda/Herceptin
July 2008 stable...yeah!
Sept 2008 NED again !!!
Jan 2009 fell off the wagon again spot back in the liver and fell out of menopause.
Feb 2009 RFA and 2nd liver resection to remove spot ---back on the NED wagon again continue Tykerb, Herceptin.
March 2009- oophrectomy added Femara and bi-annual Zometa
May 2009- scans clear but suspect lung nodule
June 2009- Lung VAT wedge resection to remove nodule---fungus ball not cancer!! phew
Aug 2009- NED
Nov 2009-scans again clear YAHOO!
March 2010- scans clear continue Tykerb, Herceptin, Femara, Zometa Q6mo
Nov 2009-Nov 2019 scans clear done every 6 months


Feb 2020 - Fell out of the NED wagon hard! single liver lesions and large infect cyst. 3 weeks in ICU.
March 2021- 5 cycles perjeta, herceptin, navelbine. lesion stable.
June 2021 - 3rd liver resection to remove single liver lesion. Continued perjeta, herceptin.
Nov. 2021- PET scan show 5 hot nodes near liver. 9 cycles Kadcyla
June 2021- PET scan shows progression. nodes size unchanged but even more SUV uptake.

July 2021- start ENHERTU
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Old 04-19-2017, 11:07 PM   #11
Vinafera
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Posts: 10
Heart Issues with Long Term Herceptin Use

August 2015 I was diagnosed with MBC, mets to the bones, 5 dermoid benign ovarian cysts, and high blood pressure. My baseline echo & EKG were perfect. After being on Herceptin for 5 months (I am still on it every 2 weeks), my EF dropped and BP went up. Not being able to take Lisinopril because it gives me a nasty cough Cardiologist put me on Valsartan and Metoprolol. I go for an echo every 6 months, the ticker is back to normal, my dizziness and headaches are gone.
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