Preventing cardiomyopathy with Herceptin

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smhowell
smhowell Member Posts: 2

Don't know if this has been covered yet, just found this forum 10 minutes ago.

When I take Herceptin, I'm careful to take at least 200 mg CoQ10 per day. I also take carnitine. Carnitine is absolutely non-toxic (it is a food) so there is no upper limit. I use an liquid vanilla flavored carnitine, which I enjoy the taste of, kinda like a bedtime treat. Both of these feed the heart muscle with different mechanisms.

When I started doing this, my rates when from the mid-40's to the low 60's; higher than before I started Herceptin.

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  • moonchild64
    moonchild64 Member Posts: 49
    edited October 2008

    Thank you for the great timing of your post.  I got a call from my onc last week that my MUGA had decreased significantly enough - from 63 to 48 - to postpone my Herceptin for a month. I have had five Herceptin treatments - 4 as part of TCH and one on its own.  

    I was disappointed and frustrated but now hope that there is something I can do to help my heart function better.  I have my next MUGA on 11/3 and will give these a try.

    I looked up Carnitine online and it is interesting that it is found naturally in red meat and dairy - both of which I either eat very little of (red meat) or cannot eat (dairy - due to lactose intolerance).  Could this be part of the reason my MUGA had significant decrease?  I'd be interested to know if those that never have a problem with MUGA are meat/dairy eaters.  Here is info I found:


    Carnitine is a chemical produced in the body, which is required for the passage of fatty acids across membranes of the mitochondria. There are two types - carnitine and acetyl-L-carnitine, the only difference between them is that acetyl-l-carnitine is absorbed more efficiently in the blood and is in overall more effective. It improves stress tolerance in damaged heart muscle in humans and it has anti-fatigue effects. Studies have shown that it has antioxidant properties also. The major sources of it are red meat and diary products

    I am certainly learning alot about the impact of nutrients on specific functions within my body that I may never have understood pre-BC.

    Thanks again smhowell!!

     Michelle

  • nobleanna007
    nobleanna007 Member Posts: 641
    edited October 2008

    Hi,

    WOW this is intresting for us with low Muga's can you get all this at a healthfood store or online. Sorry I am so stupid about all this cause I have never taken vitimins. I do now! But thats it. I am having another Muga next week hopefully its gone up. But would love to give this a shot so I can finish my Herceptin.

                                        Thanks for letting us know this.-Bridget

  • moonchild64
    moonchild64 Member Posts: 49
    edited October 2008

    Bridget,

    I picked up Carnitine at our local health/organic food store.  It was $16 for 30 tablets.  Here is more info I found online about this supplement:

    http://www.umm.edu/altmed/articles/carnitine-l-000291.htm

    Hoping it makes a difference for us with low MUGAs so we can continue on with our Herceptin...

    Let us know how things go next week

    Michelle

  • mthomp2020
    mthomp2020 Member Posts: 1,959
    edited October 2008

    Here's another interesting thing about Acetyl-L-Carnetine.  It's been shown in a couple of studies to help prevent and even reverse neuropathy caused by the taxanes.  So it could do double-duty if you're on Herceptin as well. 

  • nobleanna007
    nobleanna007 Member Posts: 641
    edited October 2008

    Wow!!!! I am definatley gooing to try this! I live in Maine but we have a few health food stores in my area. I also have neuropthy so like you said it could help with that also. I am currently on Lyrica. Which helps but I am still in the pain med brackett which I hate cause they make me sleepy or I can't drive and the one thing with this neuropthy that kills me is driving. I am so excited and will stop in my healthfood store this week.

         Thanks agin for imfo and I will let you know on that muga keep your fingers and toes crossed for me at 10:00am on Thursday the 30th. I will let you know. I wonder should I start that befor this muga scan or not? Because if its still low I have a case to get into a cardiologist which I do want to. they say between Herceptin and A/C chances of having heart conditions down the road is greatly increased and it runs in my family on both sides. My Onc. said if we did not see a big improvement then I would see a cardiologist for meds. So here I am hoping its up and then on the other hand I really want to be monitered by a cardio. Cause I have had since July twinges and pain in my heart. And I have gone to the ER twice for it and they just kind of dimissed it as anxiety and pain from neuropthy. So I don't know what to think. I still get it but its like pulling teeth to get anyone to listen to you. I told them this last time I had a low muga and they did a ekg on me which is not going to show the problem. Well I have been doing some rambling on! Sorry!

                                                           Best wishes- Bridget          

  • DebbieB
    DebbieB Member Posts: 161
    edited October 2008

    Bridget,  you most definitely want to get in to see a cardiologist.  Cardiomyopathy is NOT something you want to treat on your own with CoQ10 and diet.  It needs to be treated by a cardiologist and be sure to tell the cardiologist about all supplements that you may be taking.

     I developed cardiomyopathy from Adriamycin 6 years after the fact.  My understanding now is that heart damage from Adriamycin is typically non-reversable.  The damage from some of the other chemos including Herceptin can sometimes be reversable.  I started out on 8 heart drugs and am now down to 5 and have gotten my EF up from 18-22% to 45-50% after a year. 

     I don't want to scare anyone but the cardiomyopathy can sneak up on you and you can go downhill very quickly.  In a period of 4 weeks I developed shortness of breath but it was only when I exerted myself or slept.  I went to 4 different doctors, 6 times in that 4 weeks and everyone missed my dx.  It wasn't until I ended up in the ER and had slightly swollen ankles (which was the first time that occurred) that the ER doc realized I had cardiomyopathy and congestive heart failure.  My heart was under so much stress that I was at a very high risk for sudden cardiac death.

    Let me also say, I was 51 when I was dx'd with cardiomyopathy.  I didn't smoke, drink, have high blood pressure or cholesterol, wasn't overweight, didn't have any blockages, etc.  which contributed to my not being dx'd with cardiomyopathy.  Doctors told me later that nothing about me would have indicated that I had cardiomyopathy.  I knew there was something bad wrong and I was bound and determined to find a doctor that would figure out what it was.  It just ever dawned on me that it would be my heart.  And I didn't think to tell them that I had done Adriamycin and to check my heart.    I think it is true that doctors tend to miss heart problems in women!

     I realized that chemo could be toxic to the heart, however; I just never really understood what kind of heart problems or the symptoms.  So I'd like to bring some awareness to this problem so hopefully others can catch this before it gets as bad as mine did.  I'm fortunate that the heart meds are working.  I'm not sure my EF will ever get back to normal.  But the meds increased it enough so that I don't have to worry about a heart transplant or defibulator for now.

    By the way, my onc never did muga scans.  I asked several time but he didn't see the need!!!!  If I had it to do over, I would have demanded a muga scan or gotten a new onc.

     Good luck.

     Debbie

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