Heart function dramatically reduced by Herceptin

[jpuk]

Has anyone else experienced a significant downturn in cardiac function as a result of Herceptin treatment? I have been on Herceptin for 3 months. My firsst The MUGA test before starting chemo in January showed a respectable 67%; the test before starting Herceptin in August showed 61%, i.e a 10% loss presumably caused by the chemo. Now today I have learned that the MUGA test done 2 days ago showed only 52% - a further 15% reduction in the 3 months on Herceptin, and only just above the 50% safety tolerance level. My oncologist has decided I can have the treatment tomorrow but must repeat the MUGA test in 3 weeks, and if the resullt is similar or worse the treatment wil be stopped.

My diagnosis last December was Inflammatory Breast Cancer, plus 3 tumours and DCIS and IDC, and massively HER2 positive (5/13 nodes positive although mercifully no further invasion detected) - so the likely prospect of having Herceptin withdrawn is sickening - like a lifeline about to be taken away.

Does anyone have a similar experience? If so, what has subsequently transpired?

[Lyn]

Don't panic too much, as long as it stays above 50% it can hover up and down. My heart specialist told me to take CQ10 with chemo drugs but as Herceptin is not a chemo drug I don't know if it does the same, it can't hurt and if you can get 3 weeks worth under your belt before your next scan it may help. I have been on Herceptin for over 4 years now and mine hovers above 50% last week it was 58% and if you read me other post about the benefits and risks, outweighing each other you may get a clearer picture.

Love Hugs Lyn

[jpuk]

Thank you Lyn for your response.

I had another Herceptin treatment today and can't help wondering if it has been the last. Moreover, this week is the anniversary of the screening mammogram which revealed the condition and started off the whole vile business, so I am feeling more vulnerable in any event. It will be a very difficult 3 weeks to live through until the next heart scan.

[mary c]

Hello!
Last week I received the results of my echo - I was told that the herceptin (I have been taking it every 3 weeks since the middle of January) was starting to damage my heart - the oncologist told me that they were going to halt the herceptin for 3 months and then decide if they would start it again. The scary part is, my liver tumour (I was diagnosed with stage 3 breast cancer in 2000 and diagnosed with liver mets in December of last year) is active again (just in the last month) and a CAT scan has revealed a tumour on my right ovary. I am going to get my ovaries removed (I am only 34) as I am estrogen postive (have tried tamoxifen, but obviously the estrogen is still feeding the tumour) and the oncologist wants me to start Xeloda (I took taxotere at the beginning of this year). I have asked for a referral to Sloan Kettering (I am Canadian), just to get another opinion, but other than that, the fight is on again...

Mary

[Rupali]

I went thru the same path of ffalling MUGA and oncologist not rendering much help.
I immediately went to a cardiologist. He put me on LIsinopiril and oCoreg and in 3 weeks my MUGA was back up. Besides that I have been taking COq10 (200 mg) for almost an year now and I am bumping it upto 400 mg per day now.
Also do yoga and walk which will help and leave alchol or smoke and move to strict vegan meals with just the permission of 2 servings of salmon a week.....

[edukshunm65]

My onc. did the MUGA on me also,which showed 10% damage to the heart muscle and also has me on Lisinopril. I did computer research on herceptin, and as good as it is suposed to be, the most prominent side effect is more heart and or liver problems, and I am supposed to consent to this? I go back to my onc. this Wednesday the 30th, and I am going to tell him no dice on the herceptin. Now we need a plan B.

[margaret]

I know I have submitted this post before in the past but I wish people would do more studies on the accuracy of the 'muga scan'. I think it has a very large margin of error in any given reading. I really would hate to see someone prevented from getting the life saving drug herceptin because of a 'faulty' inaccurate reading from a muga scan. I will keep resubmitting this post everytime someone gets a low reading.

Hi,
I justed wanted to share my experience with muga scans. I had my first muga scan at diagnosis and it came out to be 49. They weren't sure if they would give me herceptin. I did 4 rounds of A/C and then had another muga. It then read a 58. So according to these readings, the 3 months of harsh A/C actually improved my heart significantly. My oncologist laughed at the results. Obviously there is a large margin of error in these muga scans. I would hope that no one is ever prevented from getting herceptin just because of one low muga scan reading. I for one do not put any credit in one low muga scan reading. I had a very healthy heart the whole time and had no trouble with the herceptin. Thank god, my oncologist didn't just react to the first low reading.

[Becky]

I agree with you and my onco does too. I first reading was 70 and my second reading was a range of 60-65. Although still good, it is still a 10% drop. My onco says that it depends on if the 70 was 65-70 and he said that they are not as accurate as in perfection. So, it said no big deal (plus the reading is good anyway). He said he would be more concerned going from 70 to 50 as that is a statistical drop.

Best regards

Becky