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On this topic, I will just say one thing to keep in mind is that too much herceptin can be a bad thing for your heart. The only way to know if you are getting to much...is to watch your tumor markers very carefully and try to take just enough herceptin to keep the CA 27/29 around 10 and the Serum Her-2 under 12. With that said, I will give you my experience. For many years, I only took Herceptin about 5 or 6 times a year. This was both good and bad. Eventually, I had to change oncs and the new one "convinced me" which is VERY hard to do...that by not staying on some regular dosing of Herceptin, I was opening myself up to all kinds of problems...and she turned out to be right as eventually, in addition to liver mets, I also got pelvic and bone mets..long story, but all this could have been prevented had I heeded the traditional wisdom{still, I got a lot of living packed into those early years}. Anyway, we were arguing over all this about the same time the studies out of Canada for the 6mg/kg every 3-weeks were coming out, so RELUCTANTLY, I agreed to do the higher dosing (I had only been taking the 2mg/kg). But since my body reacted amazingly as always to the herceptin, after only a few cycles on the 6mg/kg, I started to feel funny, out of breath, had trouble walking 1 mile, much less my usual 6...and I am sure those of you who "know" me will find this EVEN harder to believe...but I had difficulty talking...felt so tired and weak...then, after one particularly memorable dose of the Herceptin, I collapsed alone at home following heart palpitations and nearly died. About two weeks later, I got my CA 27.29 test back, the one that I had taken JUST prior to receiving the 6 mg of the Herceptin that nearly took me out of this world....it was ONLY 3 ....and as the herceptin tends to drop my numbers immediately as soon as I receive it...they must have gone way too low and suddenly I was having all these heart problems that I never experienced after years on Herceptin (my MUGA's are usually in the mid 60's). The next week, I called my onc and pointed the terribly LOW CA 27/29 out to her...she said it had nothing to do with my heart symptoms (and reminded me for the 100th time that she did not "believe in tumor markers" --I wonder if she has gotten past the Easter Bunny) and that she would see me the following week for my next scheduled 3-week dosing of YET another 6mg/kg. I REFUSED treatment and told her I was going all the way to Scotland so she could not STICK me and we would discuss upon my return in 6 weeks...funny but true..I did take my son to Scotland that year...it was a WONDERFUL ADVENTURE...we even road on the Harry Potter train and visited beautiful Isle of Skye. The ONC made me sign a waiver as of course NO ONE is apparently doing this.... Eventually, we negotiated the every 6 weeks (6mg/kg) Herceptin thing with very good results. My heart returned to normal. I can pump out my 6 miles in just under 2 hours and best of all, if my numbers do go out of whack and I can not bring them back in with diet and exercise, my onc allows me to take an extra cycle (one in-between the 6 weeks) to keep me ahead of the her-2. She really is good about getting me what I really need, despite the fact that we are just very different kinds of people.
I have seen Co-Q 10 do wonders...Co-Q10 in layman's terms is an enzymatic substance our bodies produce and exists, I believe I read, in every single cell. It has a lot to do with mitochondrial respiration. I personally do not use it, preferring to take PLAIN magnesium for the heart and eat onions instead...sigh...but that is just me...wink. However, I have posted on this site, that I worked personally with a woman who had severe colon cancer mets to the liver, lungs, bones, and possibly pancreas, and I watched her live an amazing QOL for 2 years AFTER all those mets and using the co-Q10 enabled her to breath beautifully until the very bitter end when she died NOT FROM cancer but from an accidental overdose of medication given to her in a WELL-KNOWN hospital...such a tradegy...she was doing her daily walks and everything..sighhh...Anyhow, if anyone has Congestive heart failure of any kind, go with the Co-Q10 and if anyone knows alcoholics out there who just can't get their act together and who refuse to go to AA, BUY THEM a BOTTLE of Co-Q10 and WATCH with your own eyes...the amazing difference in their personalities (especially the violent ones) and reduced alcohol consumption. But to be effective, they must keep taking the Co-Q10 daily. When the bottle runs out so to speak uh...of CoQ10 I mean...and if it is not replaced, the poor tortured souls will revert back to their less engaging ways... Fascinating... Warm regards to all, Gina P.S. Walking regularly and ingesting adequate magnesium and carefully monitoring Herceptin intake will keep the MUGA in a warm and fuzzy place...smile...GP
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