Muga score drop?

[emmastarr]

I had an ECG on Tues but the technician would not give me my MUGA score- they normally do at my hospital. I had a call from the hospital this afternoon saying that my oncologist want to see me Weds afternoon to discuss my ECG which suggests to me that my MUGA score has dropped. I am slightly concerned as I have only had 9 herceptins so far. Has anyone else been in this predicament? Would they reduce the herceptin dose/give meds to increase my MUGA score before they would discontinue the herceptin? I have no real symptoms of anything untowards, except for fatigue and a few palpitations. Thanks, Emma

[tricia keegan]

I did'nt have this Emma but think the usual is to stop herceptin for a little while to give the heart time to recover and then resume. I'm sure you'll get some personal experience's from other's who went through this too.

[Jackie07]

There are some members taking enalarpri (?) and other medicine (prescription by cardiologist) plus regular exercise to improve their scores in either ECG or MUGA. The protocol is to stop treatment when MUGA dropped more than 10% or below 50. We do have a couple of members reporting able to resume treatment after 'rigorous' exercise. Most recently Brenda who's participating in a clinical trial out of her state. She had posted her 'formula' not too long ago.

[Jackie07]

Here's the formula that helped Brenda (Hutchbk) improve her heart function in order for her to participate in T-DM1:

"The recipe for me was 1. Lisinopril at bedtime, 2. CoQ10, 100mg, twice a day, 3. CardioProtect supplement twice a day, (which has l-taurine, resveratrol, CoQ10 <50mg> and other vits and extracts), made by Bio Genesis, 2 in the am and 2 in the pm, 4. Omega 3 ~ (EPA, DHA, GLA) 2 per day, 5. NO alcohol, NO caffeine, LOW sodium, 6. Brisk walking 30-45 minutes every day.

I did this for 3 weeks religiously and my LVEF increased from 45% to 53% (and I have been off of Herceptin/Tykerb for 5 week "wash out" period before trial treatment, which was bound to help, too)."

[hutchibk]

Thanks Jackie - you beat me to it! Yes, that was my recipe for success. But, I also recommend that you see a cardiologist regarding the Lisinopril (and you can also take Coreg at the same time... I couldn't, but many can if the Cardiologist agrees).

It's not impossible to correct the heart issue, but you have to be diligent. I also have stopped ALL caffeine and alcohol, which wasn't hard for me because never consumed very much of either... they are both pretty hard on the heart muscle/left ventricle.

[emmastarr]

Thanks very much for your replies, ladies, you've given me lots of info. Let's see what they say on Weds, have everything crosssed! x