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Old 12-10-2013, 12:17 PM   #1
kimsmo
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Cool Heart Problems

Just checking to see if anyone else is experiencing heart issues due to Herceptin.

My left ventrical was functioning at 78% prior to Herceptin, and after five months of treatment, it is down to 53%, according to my Muga scans. However, my echocardiogram and EKG show my heart is functioning very well. My oncologist conferred with some cardiologists at a cancer research hospital and they said they rely solely on echocardiograms for Herceptin monitoring. They don't think the Muga is very reliable. So after a 9-week rest from Herceptin, I resumed treatment yesterday, and we'll continue to monitor my heart regularly via echocardiogram until I complete Herceptin treatment in June.

If the Herceptin causes heart damage, I've been assured it can be treated and shouldn't affect my quality of life. My oncologist and cardiologist agree that HER2 cancer is so aggressive, the benefit of Herceptin outweighs the risk of heart damage.

Does anyone have a similar story or advice?
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Old 02-05-2014, 08:38 PM   #2
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Re: Heart Problems

Many people experience a lowering of LVF during Herceptin treatment, but typically the numbers go back up when treatment ends or is suspended.

You may wish to post this question on the main HER2 thread to gather more responses.

Best of luck.
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Old 02-08-2014, 02:10 PM   #3
waterdreamer
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Re: Heart Problems

I agree with your oncologist. You may want to look at supplementing with a Potassium/Magnesium supplement. I take Twinlabs. I was having heart issues on Kadcyla - which is Herceptin combined with chemo, my heart was skipping beats. Now I take Potassium/Magnesium every night as advised by the cardiologist and I have no problems. Also you may want to look into taking Evening Primrose Oil - besides supposedly protecting us from Her2+ overexpression, it is good for your skin, hair nails and joints. I have been on Herceptin for 5 years now and my echo is great.
Best wishes
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Oct 2008 Double mastectomy 22/28 lymph nodes positive
Decline chemotherapy (decision I regret)
Nov 2009 Mets to lungs and bones.
Dec 2009 Start Taxotere and Herceptin, T1, T3 heal completely and lungs are clear, T2 and first rib have lytic lesions. First rib becomes sclerotic. Considered stable.
May 2011, Onc calls progression and I cross over from comparison arm of clinical trial to TDM-1
Brain scan in Sept 2011 showed small tumor in right cerebellum, did Novalis radiation.


Feb 2013 < 1cm tumor in left frontal lobe. Did Novalis in March and latest scan shows no sign of brain metastasis.
Aug 2013 did 36th round of TDM-1 Due to TDM-1 side effects, shortness of breath, and difficulty getting my balance when getting out of bed, agreed with my oncologist to stop TDM-1.
Took a six week break, bone scan showed small uptake on left first rib. CT showed hypodensities in liver (too small to biopsy) and small nodule in lungs (mediastinal).
Started Navelbine weekly. Did one round with Herceptin.
Skipped next 2 rounds, due to neutropenia. Next chemo 7th Nov - have had 3 Neupogen shots, so WBC should look better... Did not tolerate Navelbine well.
December 2013 scans show no sign of active cancer.
March 2014 - currently only on Herceptin - brain MRI clear, PET/CT two nodules in right lung show uptake
May 2014 - stop Herceptin.
Sept 22, 2014 Brain MRI clear :) PET/CT Progression in lungs.
Sept 2014, Xeloda, Tykerb and Herceptin.
Nov 2014 - Decide to take a break from all treatment.
May 2015 - Brain met radiated with Novalis
July 2015 - Have progression in right lung.
Sept 2015 - Perjeta and Herceptin alone after a 9 month break from all treatment.
Nov 2015 - Thoracentesis 1500ml removed from right lung.
Dec 2015 - Two tiny 1mm brain mets radiated in right cerebellum.
Feb 2016 - Thoracentesis 2200ml drained from right lung
Feb 2016 - Stopped Perjeta and Herceptin and started back on Kadcyla as I had no previous progression on it. After 1 cycle of Kadcyla markers begin to drop. On second cycle add Keytruda.
March 2016 - Thoracentesis 1650ml drained from right lung.
April 2016 Thoracentesis 1500 ml drained from right lung.
June 2016 CT scan shows progression in right lung, as well as moderate pleural effusion requiring Thoracentesis.
June 2016 Decide to stop Keytruda, and will do chemosensitivity test through Rational Therapeutics. Plan to continue on Kadcyla for next two cycles.
July 2016 - Start weekly Abraxane with Herceptin. WBRT with hippocampal sparing, Taking Namenda. 15 sessions over 3 weeks.
Aug - Dec 2016 - 2 infusions of Navelbine, very hard on my body and still dealing with anasarca (generalized edema) 1 infusion of Havalen
My doctor wants to put me on hospice.
Dec 23rd 2016 - I am granted compassionate use of Neratanib.
May 31st 2017 - still on Neratinib, feeling good.
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Old 02-09-2014, 12:28 AM   #4
Aussie Girl
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Re: Heart Problems

Dear Kimsmo,

If you search the site using the search function up near the top of the page, you'll find several other threads about heart troubles. They do tend to resolve and may not recur when you have herceptin again. The echocardiogram is the test to rely on. The medications used depend on your symptoms and your doctor's preferences. Keeping your haemoglobin up with iron and vitamins through diet or supplements will reduce symptoms.

Hope it all goes well.

Aussie Girl
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17 June '13: Screen detected impalpable mass, Mammogram neg, US.
25 June '13: Diagnosed after multiple biopsies and MRIs
28 June '13: Left lumpectomey
4 July '13: Left Mastectomy
12 August '13: Commenced TCH chemo
Mid December '13 : TCH finished. Herceptin continuing three weekly.
4 August 2014- Herceptin infusions finished.
END OF THERAPY - YAY!
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Old 02-09-2014, 06:35 PM   #5
JJ201349!
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Re: Heart Problems

Dear Kimso,

I had the same problem and now I'm waiting until the end of february to have another MUGA. My baseline was 53% and it dropped to 34%.

If the ventricular function improves, my oncology will restart the Herceptin.

Blessings and Good luck!!
JJ
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Old 02-10-2014, 01:17 AM   #6
Jackie07
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Re: Heart Problems

Hi,

Wow, you have a very strong heart!

My Herceptin was cut short after just 4 weekly ones due to declined MUGA.

I was told (or read) that the treatment is usually halted when MUGA has declined more than 10 % or has dropped below 50%. I had to stop at 22 weeks (18 weeks of TCH + 4 weekly Herceptin) in January, 2008, and so far I've been doing well breast cancer-wise.

One (or more?) member has reported using enalarpril to help strengthen the heart. I do know that exercise seems to be an important factor. Walking 30 minutes each day does wonders.

Sending you good vibes.
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