Muga

Barbara H. · 06-20-2007, 02:55 PM

Hi,
I am trying to get into a trial and just had a Muga scan. It hasn't been completely analyzed, but the technician said it was 47. Since it is below 50 I am probably disqualified from the trial. Does this mean I have to discontinue Herceptin? Also, does anyone know how to increase this score? I am quite upset because I was looking forward to this trial.
Thanks,
Barbara H.

chrisy · 06-20-2007, 03:25 PM

Hi Barbara,
I'm sure you are very discouraged right now. You are probably right about the trial, and may also have to stop Herceptin for a while to let your heart rebound. The good news is, most times the damage is reversible and after coming off Herceptin for a time, people can go back on again. Keep in mind, this is for your protection - none of this will do any good if you don't have a beating heart.

Couple of things to consider, tho - have you had ECHO's or MUGA's in the past? And if so, is this result appreciably different from your prior? Perhaps you could get it "redone". I've had mine fluctuate to as low as 53 then up to 68. I just had an ECHO yesterday - so of course I've got that top of mind myself.

As to how to get things back on track, here is a link Becky posted regarding aerobic training, and I know many have taken CoQ10 supplements to support their heart health.
http://her2support.org/vbulletin/sho...light=ejection

Barbara H. · 06-20-2007, 03:46 PM

Thank you Chrisy. I have only had an echo.
Barbara H.

Susan McQ · 06-20-2007, 04:09 PM

Mine went down to 47, I was taken off herceptin for 1 month. Then had a repeat Muga and it went back up to 54. I was then able to complete my year of herceptin.

Susan

Mary Anne in TX · 06-20-2007, 04:12 PM

Hi Barbara! I take the CoQ-10 and it surely does seem to work for me. ma

mamacze · 06-20-2007, 08:27 PM

Hi Barbara!
How frustrating for you to have this be the only barrier to a promising clinical trial. Mine has fluxed from 56 - 66 %...when I hit my low, I saw a cardiologist who has me on a program of cardio work 1 hour per day and salmon, co Q 10, walnuts, lots of omega 3 fatty acids...you know the drill...if you are up to it, hit the gym....then wait and get your next MUGA the day BEFORE your next Herceptin...let us know what happens
Love Kim from CT

rentrac · 06-23-2007, 09:12 AM

Since I've had Adriamycin and Herceptin over the last 3 years, I've seen my MUGA drop from 64% to 53%. I'm not on Herceptin now, but I"m convinced that a good half hour walk every day has protected my heart. Even when I felt weaker than a newborn kitten, I would still walk, just VERRY slowly, and with someone along to help me out. I'm pretty sure you can improve your MUGA numbers with exercise, but I'd get an OK from your oncologist about the best way to go about getting the exercise that's best for you. Incidently, I found that swimming was even more enjoyable for me than walking, even if "swimming" means a very slow back stroke for 1/2 the pool length. I figure that as small as a grain of sand is, with enough of them you can get a sand dune, so a little exercise is better than none! Best of Luck to you!
Rentrac

chrisy · 06-23-2007, 10:06 AM

Hi Barbara,

I got the results from my ECHO on Thursday - the first one since I went off Herceptin - and my LVEF is up to 73! The ones prior to entering the trial were 65 and 68. The 68 was "longer after" my last herceptin treatment, so maybe there is a difference when in the cycle you get the test done, as someone else said, get the test the day before your herceptin. But the 73 is for me a personal best since they have been measuring it, it was at some points in the mid-low 50's. So a break from the Herceptin may turn things around for you quickly and possibly allow you to get into the trial after all.

Barbara H. · 06-23-2007, 11:06 AM

Hi Chrisy,
Thank you for the encouragement. I am pleased for you that your score has increased. Unfortunately, it turns out that my Muga score was 45%. The oncologist running the trial even called Genentech because he felt that I was a perfect candidate for the trial. Actually, I had been off Herceptin for 5 weeks when I took the test. I feel like a diabetic that has to lose insulin. When I started on Herceptin alone (July 04) with mets to my brain, lungs, liver, skin, and through out my body in the lymph nodes I became NED in about two months. I stayed that way until Feb. 06 when it came back in the bones, the only place it didn't appear in May 04. Everything else has remained OK and it is felt that Herceptin continues to help even if the cancer appeared in the bones.

I already take 150 mg of CoQ10 in the morning. I plan on increasing the dose and need to start exercising again. I was put on Navelbine in Feb 04 which wiped me out. I responded with only stable bone mets. I went off of it in Dec. 06 because I had to have brain surgery again for radiation necrosis. Then I had a bone biopsy in Feb. 07 to see if my hormones had changed to positive. The biopsy did not work. I did a few rounds of Faslodex just to see with no result. So here I am with a great trial for me, but I can't participate, at least not at this time. I will see my oncologist on Thursday and probably start Tykerb with Xeloda.

Through all of this I have continued to teach third grade full time and have missed very little work. The only time I took off this past year was two weeks for my brain surgery. My big problem is that I haven't made time in my life to exercise since my cancer returned to my bones, and this Muga test result is certainly a wake up call. My plan is to start walking, kyaking this summer, and see a cardiologist.

I have to say that I have tried to stay as positve as I can about this latest bump in the road, but I have short moments of feeling quite sad.

I typed Muga into the search section and gained some helpful information about how I might improve my score. I appreciate this information and those of you who have responded to my post.

Best regards,
Barbara

Andrea Barnett Budin · 06-23-2007, 02:57 PM

Barbara, You're amazing! Working and all you've been through. Taking time off for brain surgery... Hope you're doing a lot of deep breathing exercises.

You can check my signature for my story. I initially had a MUGA, then ECHOs ev 6 mnths. Last yr Pegram graduated me to annually at this point in my career as a Survivor. My NY onc/supplement guru has me on Co Enzyme Q10 150 -- twice a day. Has added Perfusia (arginine, but that's the one he prefers, best quality I suppose) 380 -- just once a day, though the bottle says take lots more. He swears THAT 1 Perfusia a day will boost your ECHO right off! I take Omega 3s EPA 800 + DHA 400. My doc wants me to take NEUROMINS instead. I'm thinking about it. B6 (P5P50 activated B-6, which doc says is best). Grapeseed Extract 150, Carnithane 500, Magnesium 200 and Potassium 545 twice a day. ALL FOR HEART HEALTH. I get most of my vitamins from Vitacost -- good quality and reasonably priced. A bargain isn't always a bargain when it comes of vitamins, you know. Hope this helps, as I know only too well how vital staying on Herceptin is. YOU CAN DO IT!

I wish you WELL. I am sending loving, healing energy to you right this moment. Let us know how you do. My money is on YOU, Barbara. You sound like you have it together, besides the sad moments, which come crashing down on us all from time to time. We just have to walk right through the fear and uncertainty and move over to the positive side. Stay strong in Spirit and in health. LOVE, ANDI

Hope you

Barbara H. · 06-23-2007, 03:34 PM

Hi Andi,
Thank you for your advice and healing energy. I have been reading your posts and marvel at how you are holding up under the stress and what you are going through. My thoughts are with you as well, and I'm sure that all will work out well in the end.
Best wishes,
Barbara H.

Gina · 07-15-2007, 11:57 PM

I swear by walking and Magnesium...also, eating onions and garlic are age old supporters of the heart muscle, but REMEMBER, it is a MUSCLE, that is why the walking is essential...also, you need to somehow get more rest. Try a warm epsom salt soak before sleep.

Have missed talking with you--it has been a long while,
Gina

BonnieR · 07-16-2007, 07:04 AM

I have had Echocardiograms in the past but what is a MUGA?

Barbara H. · 07-16-2007, 09:43 AM

Gina, thank you for your wisdom. It is so great to see you posting for the support group again.

Bonnie, the muga test is another way of measuring the pumping action (ER fraction) of the heart. Check this site for more information.
http://heartdisease.about.com/cs/car...sts/a/muga.htm
I have been walking and exercising. I will have another muga scan next Monday. Hopefully, it will be normal again.

Best regards,
Barbara H.

StephN · 07-16-2007, 10:41 PM

Dear Barbara -
I certainly am sending you big, best wishes for a better score this next time.

My annual MUGA was today and the technician told me that my score is just the same as last year - 60. Naturally I am VERY pleased about that.

I was wondering if you need more of a workup than what the cancer center does. Maybe your GP can send you to a good cardiologost just to put you through another test or two and maybe vary your plan. Since it seems you are doing many of the "normal" right things to keep your heart in good condition. That left ventrical is the "workhorse" of the four heart chambers and important to keep in good running order.

Got family descending on me from all sides at the moment, so have to cut my time on the site here.