Low MUGA score

[duga35]

Hi folks!

On Monday I had my first MUGA scan. Today the nurse from my oncologist called to tell me that my score came back at 34% and that the doc was stopping the Herceptin. She seemed a bit upset because he didn't order a scan when I first started treatment. I go next Friday for an echocardiogram (sp?)

I know that 34 is low, but how bad is it really? Does that mean that my heart is only functioning at 34%? Am I a walking time bomb for a heart attck or stroke now?

[AlaskaAngel]

An EF of 50 is generally considered the lower range of normal, Duga. But even so, often there is some degree of recovery after being taken off Herceptin. Many people here use CoQ10 daily to help with heart maintenance.

I live out in the boonies, but it is standard practice here to have either a MUGA or echo as a baseline prior to starting drugs affecting the heart like Adriamycin or Herceptin.

Wishing you the best,

AlaskaAngel

[goops]

Aerobic exercise helps bring the heart rate up too. If you feel good enough exercise.

I found out that it makes a difference who does your Muga test - twice I have come out with a score of 47 - both times the same technician did it. She is the person who told me that it makes a difference who does it. Your Echo may come out higher - In December my muga came out 51 and my echo showed it was greater than 55.

[chrisy]

Duga, how do you feel?

True, it does matter who does the test, it also matters WHEN the test is done - you want to have these tests done just before your herceptin, as the numbers will be lower after the Herceptin.

It's also normal to get a baseline scan, but I didn't really get one either until I'd been on TCH for 2 months.

Doug it's also possible to just get a bad test! I had a bogus ECHO a few months ago (nobody got excited because the LVEF was really high - but I knew it was bogus). The next one was right in the "normal" range for me.
Good that you are getting an ECHO, to confirm or deny the MUGA

Many, myself included, do take CoQ10 to improve heart function. That and all the usual stuff for a healthy heart.

At any rate, getting another test is important so you can be sure what you're really dealing with (as if you don't already have enough!)

Keep us posted.

[Joan M]

Duga,

The normal range is between 50% and 70%.

I had a baseline Muga scan just before starting Herceptin. Now I do echocardiograms.

Herceptin affects the left ventrical ejection fraction and can cause congestive heart failure. A symptom of that would be breathlessness. But it's not like a heart attack.

Another reason to take a patient off of Herceptin is if their LVEF score drops more than 10%. For example, last year my Muga score went from 70% to 57%, and even though the score was above 50%, the drop was more than 10% so my onc took me off Herceptin for three months. My score bounced back to the low-to-mid 60s, and my last echocardiogram a month ago is holding there.

Are you getting Herceptin once a week? If so, the infusion should be 30 minutes. If it's once every three weeks, the infustion should be 1 1/2 hours.

I go every three weeks, and the nurses were initially giving me a one-hour infusion because I had taken Herceptin before and never had any problems. But I had them change it to 1 1/2 hours and so far it's been okay for the last few months.

I would also agree with Goops that exercise, within reason, helps to keep up the heart rate.

Besides that, it's a good idea to have your muga test or echo not around the same time as you had your last Herceptin treatment. That's possible if you have a treatment every three weeks.

Joan

[duga35]

Thank you for all of the replies! I had the MUGA scan 1 week after my 7th Herceptin infusion. I've been getting 600mg every 3 weeks. The treatments were given to me over a 30 minute period, so maybe that has had an effect. I'm glad to hear that they can make a mistake on the test, so thats what I'm hoping for. I'm a bit angry right now because the onc never sent me for a baseline test. The nurse that called me today expressed that was a big mistake because now we don't know if I already had a heart problem, or was this caused by Herceptin.

I'm somewhat overweight, but I never thought I was in that bad of shape because I work 10 to 12 hours a day, 6 days a week, and I'm on a dead run, hardly getting to set down. I have also went close to 18 years without a vacation, except for the week I took off after the mastectomy, and 2 weeks after the lymph node surgery. I never really got that tired before, but for the last couple of weeks I've been getting very tired and sometimes out of breath when just taking a short walk. I guess now I know why.......:)

[Becky]

Since you aren't having chemo anymore, you should (talk to your onc) and start the CoQ 10. I swore by it. Work up slowly to 400mg per day (in divided doses). Start with 30 mg tab at breakfast for a couple of days then add another 30 mg dose per day with lunch. After a couple of days of taking 30 mg at breakfast and lunch, guess what? - add another 30 mg at dinner. After that you can buy 50 mg tabs and switch out the 30 mg at breakfast with 50 mg. I think you get the picture. I ended up taking 150 mg at breakfast and lunch and 100 mg at dinner. There are some studies that say 390 mg is an effective dose so that's why I took that amount. I also walked, walked, walked (if you can and if you do - work up to one hr at least 5X per week). If none of that works, a cardiologist will fix you right up with presciptions that will improve your heart's function but you should be able to do it on your own.

You don't even know if you were only 40 before all this began. Keep the faith. This is a reversible thing and you can go back on Herceptin again.

[julierene]

I had an interesting time with my MUGA. I have to tell you all about this, because it just amazes the heck out of me every time I tell it.

Muga score (somewhere around there)

Jan. 2004 50 - 52%

Dec 2005 48 - 49% started HEC

Around Feb 2006 42% added lisinopril

May 2006 to April 2007 40 -48%

April 2007 switched to Tykerb/Xeloda

May 31, 2007 left my ex and forgot my lisinopril at the old house. I figured since I wasn't taking the Herceptin anymore, what was the use? I had other things to worry about.

July 2007 - after my MUGA scan, my radiologist came in to talk to me! I was shocked for him to take the time to see me. He ran the numbers again and asked me a TON of questions. Thinking I had screwed up my heart because I didn't get my lisinopril refilled, I started to break down almost in tears from the guilt. And after he felt sure that the test was run right, he told me my score was 63%. He wanted to know what I had been doing differently. After a lot of talk about my patterns and habits, he started probing into my divorce situation. He asked a whole bunch of questions about stress and I told him many of the side effects I was having. He said finally, he had never seen a case where a baseline had increased that much where the only true reason was attributed to stress. I had such trouble sleeping for the last year I was with my ex, that I only got an average of maybe 4 hours a night. He just shook his head and said, "That's a lot of stress young lady. Keep up the good work and finish that divorce!" For the first time in a long time, I was happy - and my heart was thanking me for it!

[goops]

Duga - let us know how your Echo comes out - I just had a muga come in at 47 and two weeks later they tested me with a echo, yesterday they told me that it came in at 60.

If you want a quick exercise program that will help send me a PM.

[StephN]

Hi Goops -
I would like to know about your 'quick exercise program.'

I had my annual MUGA scan this past Monday. My score dropped from 61% last year to 52% now. This is lower than when I had my first MUGA after my initial chemos and rads.

Saw my med onc yesterday for quarterly visit. Was sort of afraid she may want me to take a Herceptin break, but she said NO, she just wanted to monitor me more frequently. She also said the MUGA is the BEST test to monitor Herceptin changes.

The thinking in keeping me on Herceptin is that my drop is likely attributable to all trouble I have experienced with my clotted veins. Last year when I had the MUGA I was taking anticoagulation therapy and my Vena Cava had not given me trouble then.

Throughout all this I have continued to take no less than 100mg of Coenzyme Q10, but I think I should bump that up.

P.S. Julirene -
I am so glad that your divorce has helped your physical symptoms so much. That guy was literally "killing" you.

[Bill]

Duga, I can't help much, brother, but you are in my thoughts and prayers. Please let us know how the echo. goes. Ladies, what does the coq10 do for you?

[~Bellydancer~]

Hello there,
I have been officially been taken off of Herceptin. I see a Cardiologist and he has stated that I will never ever take it again. My initial score was 68% and it has dropped to 42%. I had 3 rounds of FEC (epirubicin is the bad one) and then 3 rounds of Taxotere and Herceptin and 1 final round of Herceptin. I am now taking Metoporol and Ramipril (Altace). I did have 28 Tx of RAD on my left side. I am still quite tired and don't have a lot of "giddy-up" some days.
My Cardiologist has scheduled an MRI and an Echo. I see him at the end of September. He feels that I will either stay the same or improve with time.......it's anyones guess.
He has been running a Study here in Manitoba to see the long term effects of Herceptin......I am his 68th Pt in 2 years who has developed heart issues.
I just have to live each day and pray for the best.
I pray that you will have positive news.

[madubois63]

Julie - I was more happy doing chemo than I was in my marriage!! I certainly understand the stress of a bad marriage and having less stress in your life just by removing that toxic person from my life.

Duga - I had a drop in my MUGA after a few months of taking Herceptin (the first time). I took a 3 month vacation from Herceptin, took Co enzyme 10 and had a MUGA. My score increased several points over my original MUGA which was normal. I restarted the Herceptin and have not had any problems since. Sometimes the body just needs to rest and rejuvenate a bit, but I would certainly recommend speaking to your doc about adding the Co enzyme 10 and definitely walk/exercise. Working like you do is not considered exercise to your body. I hardly ever sit, but just adding an exercise program of 45 - 1 hour three times a week has made a huge change in my energy, reduced stress and has made me physically stronger.

Good luck - I hope you feel better soon.

[Jean]

Bill,
coq10 is an antioxidant /and for heart health and also helps aid in heart energy and when ill (or in our case taking herceptin) our bodies need more Q10 during treatment. Also it helps lower blood pressure.

Duga,
As Becky and the others have advised, a small break, some exercise,
COQ10 and you can get back to treatment. Best Wishes,

Regards,
Jean