MUGA still down - off for 3 months - Normal?

[Donna]

Hi Amazing Group,

My last MUGA was still down, in fact it went down another point to 51 it started at 68. My onc. said I would have another MUGA in late August and see her in early Sept.

My question is: isn't this a long time to be off herceptin to have it resumed or does it matter. I have already have 7 months of herceptin and I know the FinHer study said 6 months was enough.

Any opinions or information welcome! Thanks!

Have a great day!

Donna

[Gina]

taking either plain magnesium and/or Co-Q10 daily???

Sometime the score goes down for other reasons not always related to the herceptin--stress, lack of physical exercise, circulation problems, weight gain, high blood pressure, other heart problems.

Are you also having trouble sleeping long stretches at a time--are you having any problems with constipation?? Are you nails weak??? Are you experiencing leg cramps? Are your platelets on your CBC less than 300???

If so, any of these could be signs of severe magnesium deficiency that could be stressing the heart muscle. Magnesium is necessary to get the heart muscle to relax. Add mag into your diet and please do NOT take extra calcium anything...no extra calcium orange juice---no calcium pills of any kind. Ordinary calcium from food is ok, just don't over do. Gals with Her-2 should avoid too much calcium in my experience. This is still somewhat debatable, but it all has to do with the way the mag/cal is metabolized. No matter how much calcium you take, you will only absorb an amount equal to the amount of mag you take in... The typical American diet is notoriously low in mag...you can read all about this by googling Magnesium/Calcium Blood homeostasis.

Hope this is helpful...
Gina

[Lani]

cetuximab has been reported to result in hypomagnesemia and I recently read that (if I recall correctly) pertuzumab does as well. Couldn't hurt for those with decreased LVEF to ask to see if their doctors are willing to test their magnesium levels. Would be a shame to miss something, which, if present, is easily correctible.

[Donna]

Hi Gina and Lani,

I have been taking magesium and only take calcium in equal doses to magnesium thanks to the information I read that you posted some time ago Gina. I take COQ10, took it before all of this and I still take it now. I take all my Omega 3's, too. I go to the gym 5-6 days a week and get at least 1/2 hour aerobics swimming or on the bike. The gym was more sporadic, but since the LVEF thing it's been regular.

My oncologist told me today to keep all that up and we will see where I am in Sept. I just wasn't sure that herceptin would or could be continued after such a long period of time off. She said it depended on which protocol you followed. I just hadn't heard of anything like that posted here, and this is MY SOURCE of information. :-)

Thanks for you input, hope this gets adjusted!

Donna

[janet11]

Donna, I've wondered the same thing. My MUGA (LEVEF) started at 63 before Herceptin. After 7 months, it slipped to 49 and I was taken off the Herceptin (in fact, I was getting my Herceptin when they got the MUGA results, and they stopped the bag and tossed it. So my last Herceptin was only a partial treatment) .

2 months AFTER my last Herceptin, my LVEF is now 44. So it's still dropping. I sure wonder too how long it takes to recover.

Janet

[Donna]

Hi Janet,

Are you doing anything to boost the LVEF like taking supplements or exercising? Just curious.

Thanks, Donna

[MJo]

My muga went down 16 points in 9 months and they stopped Herceptin early on me too. My follow up muga went up one point. Doctor commented it was "going in the right direction." If my muga continued to go down, I probably would consult with a cardiologist for peace of mind. I don't know how long Herceptin stays in the system. Whatever it does to make muga scores go down could continue until Herc is completely gone. It's amazing (and wonderful) how individual our bodies are. I hope your MUGA is on it's way back up by now. I feel pretty confident that nine months is enough Herceptin for me. I know there is a European study of 5000 women comparing 12 months to 6 months of Herceptin with the intent of proving six months is as effective. I hope study will show that's true.

[janet11]

I was taking COQsomething and now I'm doing a B vit complex. But I have NOT been exercising. Am re-joining the gym tomorrow and will start getting some regular exercise again (I stopped 1.5 years ago for family reasons and then got BC, so just hadn't gone back. And here in Texas, it's just hot and sticky and yucky to go walking outside. And at the gym, I can hit the pool afterwards (*grin*).

So I'm going to have a better result in 3 months, I know it!!!!!