Heart and Herceptin...

[Shannon]

Good Afternoon Ladies!!!!!

I was on Herceptin for 14 weeks and then pulled for 4 weeks as my MUGA dropped from a 52 to a 44. I knew from the AC/Taxol chemo rounds that I wouldnt make it up to a 50 in a 4 week period... as it took me 6 months to go from a 42 to a 52... so, in the 5 weeks, I went up one point to a 45.
I am now, 35 years old and REALLY want to continue on with Herceptin, as does my doctor... I would have to be closely monitored as I would be going back on Herceptin, being dropped from the clinical study, basically on my own.
I often think, as Heart Diease is the number one killer of women today, how many of those women had Breast Cancer treatment???
So, how nuts am I if I do continue with Herceptin with a MUGA of 45???
ANY comments or suggestions is much appreciated!!!

[Becky]

Dear Shannon


I would suggest seeing a cardiologist. Although I did have a drop in MUGA, I am at 60 (started at 70) and am still good to go. However, many women on this site did see a cardiologist, and with drug therapy have been able to get back on Herceptin and stay on it.

I am sure some of these wonderful women will be able to give good advice. In the meantime, make an appointment to get the ball rolling.

Best regards

Becky

[jojo]

There ARE some oncologists out there that would be willing to prescribe their patients with their EF as low as 45. (EF = ejection fraction, one way of measuring how strong the heart pumps oxygen & blood supply.) It is a bit unusual, but it DOES happen.

Good luck to you!

[Lolly]

My last MUGA showed my LVEF(Left Ventricular Ejection Fraction) at 49%, down from 55%. My onc isn't TOO concerned yet, but we have it tested every six months. If it drops to a level he considers risky(didn't ask what that magic number would be :)), I imagine he'll want to stop Herceptin until my heart recovers. I know that some have posted that they were able to successfully get back on Herceptin with no further problems after a break to let the heart recover. As Becky points out, a cardiologist's opinion would be very valuable at this point.

<3 Lolly

[Rocky]

My Muga went from 58 to 46 with A/C and I am not starting herceptin. I will have a recheck Muga in weeks to see if the rate goes up. My onc is hoping the A/C didn't do permant damage, but she believes my heart is not strong enough to tolerate herceptin for 1 year as was the original plan. Worries about not having enough herceptin to keep from having a recurrance. Some people on this board have been taking herceptin for years with good results. Am concern that I am er-pr- her2+++ with no other options than herceptin.

[jojo]

Hey Shannon,

I just noticed in your profile that you are from Bay Area. I also live here, too. Which side do you live on? I am out in the East Bay, but I go to San Francisco for cancer treatments.

I didn't have much trouble to get Herceptin off-label (I was stage 3 at original diagnosis), so if you need 2nd opinions or such, you are welcome to email me anytime: acrobaticfan@yahoo.com

[Barbara2]

Rocky, have you tried Co Q-10? It brought me up from an EF of 50-52% to an EF of 60% in about two months or so. I do try to walk a couple of miles every day, so that probably contributed, but I was walking before starting the Co Q-10.

Barbara

[margaret]

Hi,
I justed wanted to share my experience with muga scans. I had my first muga scan at diagnosis and it came out to be 49. They weren't sure if they would give me herceptin. I did 4 rounds of A/C and then had another muga. It then read a 58. So according to these readings, the 3 months of harsh A/C actually improved my heart significantly. My oncologist laughed at the results. Obviously there is a large margin of error in these muga scans. I would hope that no one is ever prevented from getting herceptin just because of 1 low muga scan reading. I for one do not put any credit in one low muga scan reading. I had a very healthy heart the whole time and had no trouble with the herceptin. Thank god, my oncologist didn't just react to the first low reading.

Margaret