How herceptin affects the heart, side effect of Arimidex

[Cathya]

I just got home from my visit to my oncologist. He has taken me off herceptin due to a 42 on the MUGA. I am disappointed. I reviewed my Action Plan with him and he was receptive but he didn't think changing my supplements had anything to do with the decline in the score. He said that they get more information than the amount of blood flow through the heart on the test. He said that the herceptin is binding to Her2 on cells in my heart and that they can see visually my heart beating and a reduction in the pumping action....he sort of squeezed his hand with vigour and then more slowly to illustrate. He said that he had considered reducing the load but thinks it would be better for me to be off for now. He will redo the MUGA in 6 weeks and if it is up redo it again in another 6 weeks to confirm and then restart me. He also said that he was checking my colesterol (don't think I'm spelling that correctly) as they are finding more people with increased levels from the Arimidex. Also, because I am her2 he is doing a brain scan. I had wanted this but didn't need to ask. My only symptom is a slight headache and my right hand swells...not too badly. Weirdly, this is not the hand that had the lymph nodes removed. He is also doing another bone density and thinks I might need something there.....but I have no complaints about my bones??!! He has agreed to the Her2 serum test but knows nothing about it so does anyone out there know where to get it in Canada.

[karenann]

I was just taken off Herceptin, too. I went in for my treatment a week ago and my ejection fraction had dropped 10 points. I am going in this Friday for another echo (it will be 9 weeks since the last one) and I see my onc a week later for the results and to discuss our plan. I guess this is where I decide if at this point, the risk outweighs the benefit for my stage 1 diagnosis. I have had 12 treatments and I have 6 more to go. I just don't know what to do.

I also wanted to mention that I am having some swelling with my right hand, too and my lumpectomy was on my left side. I had an MRI in September (not because of my hand, other issues) and all was good. I am sure you will have good results, too. I am also having issues with my joints (swollen) from Aromasin. I always say to my husband, "aren't I a heap of fun, with this ache here and that ache there".

Take care,

Karen

[Becky]

Cathy


How was your muga to begin with? Was it ok all along then plummet? How long have you been on herceptin? Are you taking CoQ 10? That can help alot with some women.

The cholestrol going up on Arimidex is a known side effect. I have been fine but my cousin (who is not Her2 - only hormone positive) got high cholestrol and is now on Lipitor to help that out. She is achy from it too.

Best regards

Becky

[Cathya]

Becky;

I started on herceptin last April or May and my MUGA was in the 60's at that time. It has been tested every 2 months for the last 6 months and dropped to 52 I think it was, then 48 twice and now 42. Could the coupling of cholesterol rising with Arimidex cause this problem to be worst do you think? I have been taking 240 mg of CoQ10 daily for the last number of months....3 or so. I just started taking Magnesium, Omega 3, Vit A and D in fish oil two weeks ago.

Cathya

[Cathya]

Karenann;

I believe that regardless of how you are staged herceptin should be taken. The problem is they really don't seem to know how much. I am supposed to be back on again and am stage 3c but her2 cancers like to travel and are aggressive so I would insist on being monitored going forward very closely. One good thing about being off for a while is that I assume when we go back on they will give us a loading dose again which will really knock out any cancer that has been lurking and building. I am going to get these tumor markers done while off and then again once I start to see the difference. It should be interesting.

What I can't get over is this swelling in my off hand. Did you ever find out what causes this? I am a little bit nervous of the brain scan but absolutely know I should have it and am grateful to get it....but...just a little part of me worries...lol.

Best regards,

Cathy