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Old 04-18-2015, 07:38 PM   #1
marion vardy
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Herception

I TOOK 4 rounds of herception and was stop because i had heart issues
my function went down to %37 and it will soon be a year and my heart function has not come back up..did this happen to anyone else
i am in belief now that the muga scan numbers was wrong ,Heart doctor dont understand it because herception dont cause permited damage
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Old 04-19-2015, 09:21 AM   #2
Lucy
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Re: Herception

Marion, Were they screening your heart throughout the process? If so, where did it start because I was told if it fluctuates by 10% they stop treatment. Also, I was told it typically is not permanent, which suggested to me that it can sometimes be permanent. I'm sorry this is happening to you but I hope that you can get better news and/or help for this.

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Old 04-20-2015, 07:57 AM   #3
LaDonna28
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Re: Herception

Marion,
I have also heard that although the majority of time your heart 'goes back to normal', there are some rare instances where that is not the case.
Maybe you can get them to recheck it again.
I have until August before I am done with my year of Herceptin. I have to REMIND the Dr. every 3 months about the echo. Currently waiting for my last results.
My thoughts and prayers are with you!
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Old 04-20-2015, 08:57 AM   #4
Becky
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Re: Herception

What kind of chemo did you receive. Some chemo drugs affect the heart and that damage may not rebound. What were you echo or mugas starting out? Also, this may just "be you" and may have occurred anyway even if you didn't ever get cancer. Were you advised to see a cardiologist? If not, you should.


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Old 04-20-2015, 09:18 AM   #5
Rolepaul
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Re: Herception

Less than 5% of the time there are heart issues of this type. If you are heavy, have prior heart issues, have high blood pressure, or high cholesterol, then there is a chance that this might occur. It is very unusual, but not unheard of. Do you feel more tired walking than previously? Are you dizzy when you stand up? Is your blood pressure higher than previously? High blood pressure is found to be a potential factor for Herceptin to cause Muga decline. I would discuss this with a specialist.
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Old 06-13-2015, 01:56 PM   #6
marion vardy
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Re: Herception

My heart function was at 47% before i started now its down to 34% and never came back up.My heart doctor is in believed it was never at 47% .So now i am with hell the herception because of the number .I DID HAVE A LOT OF HEART ISSUES i had a aorta surgery in october and found out while doing test for heart ,that i had breast cancer.So i then start chemo and herception in january.
I WAS NOT monitor till i was finish my chemo 4 rounds of chemo.with herception.4 months after i had a muga scan and it was down to 34%.and never return back up.My ? is anyone had to stop herception and if so how are they doing.Another ? is i am in believe now that with all my heart issues was it the right choice to take herception ,i was suppose to have 18 1 every 3 weeks.and s there another drug that i can take if herception was stop .mY BREAST cancer was H2R POSTIVE AND BREAST REMOVED
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Old 06-14-2015, 01:31 AM   #7
Jackie07
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Re: Herception

Hi,

I also had to stop Herceptin after just 4 weekly ones following 18 weeks of TCH. Was told that treatment had to be discontinued either when the score was below 50 or had dropped more than 10%。 That was 2007-8, and so far I have not experienced any cancer or heart issues.

Your MUGA was quite low to begin with. Did you have any heart issue before cancer diagnosis? I was found to have Mitral Valve Prolapse before undergoing brain (tumor) surgery in 1990.

Remember to eat well, exercise regularly and get plenty of sleep. (Watch for swollen ankles/knees.) Things will gradually get back to normal. Sending you good vibes.
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Old 06-21-2015, 12:12 PM   #8
Mtngrl
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Re: Herception

Dear Marion,

As others have said, that was a low initial ejection fraction. Your health care team must have thought it was worth a try, and that the benefits would outweigh the risks. Sorry it dropped so low.

Paul's advice to see a specialist sounds good to me. Talk to your primary care provider about a referral.

And, as we said in your other thread, there is no targeted treatment for HER2 that does not carry a slight risk of heart damage. Our cancer makes a huge amount of extra HER2, so Herceptin and other drugs go after that. The heart has a lot of HER2 protein. The drug can't tell "good" HER2 from "bad."

Amy
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Old 08-01-2015, 03:51 PM   #9
DOlson
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Re: Herception

I was diagnosed with stage 4 breast cancer mets to the lungs in 2007. I was HER2 positive, estrogen & progesterone negative. I had a double mastectomy and treatment with Taxol, Carboplatin, and Herceptin for 8 months. I continued to have Herceptin every 3 weeks since then. My lungs mets went away within 3 months after treatment by CT scans. I'm thinking about stopping my Herceptin every 3 weeks since I've been on it for 8 years now. I was wanting to know if there are any others out there that have been on Herceptin as long or longer than myself. I'm worried about long term side effects that are unknown from Herceptin. Thanks for help.
Donna
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Old 08-03-2015, 04:16 PM   #10
Mtngrl
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Re: Herception

Dear Donna,

Yes, there are a few people who have stopped treatment and stayed NED. Why don't you ask your healthcare team about stopping treatment and seeing what happens?

Amy
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Old 08-15-2015, 05:53 PM   #11
marion vardy
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Re: Herception

yes i did have a lot of heart issue before cancer and No i was not monitor till the first 4 round of herception and chemo was finish
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Old 08-15-2015, 05:56 PM   #12
marion vardy
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Re: Herception

no i was not monitor till i finish my chemo
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Old 11-01-2016, 10:50 AM   #13
Lifesjourney
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Re: Herception

Hi...I have received 8 Herceptin, 5 of them with TCP. I have low blood pressure regularly as well as essential tremors. The Herceptin is causing my bp to bottom out, tremors have increased substantially. I had bmx and pathology came back with no cancer cells and no lymph involvement, TCHP did its job. I have read on forums that Herceptin works well for some and then some still have recurrence after full Herceptin. My Onco said she did not see why I cannot work during Herceptin only, I am a mess with low bp and tremors and I must return to work.

Has anyone else had to stop half way through due to SE's?, if so, how are you doing? I am terrified to stop but I am unable to function properly and I believe Herceptin has cumulative effects. Any feedback is greatly appreciated.

Thanks so much!
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Old 11-01-2016, 04:05 PM   #14
Whonoze
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Re: Herception

I'm in the same wonderful situation. Have been on Herceptin since January 2007. I think about going off but don't want to risk it. My heart has been holding out so far.

My onc leaves it to me, without any real input.
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Old 11-01-2016, 04:06 PM   #15
Whonoze
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Re: Herception

Sorry. That was intended as a reply to Donna's post.
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