just had MUGA drop from 68 to 54

Is this anything to be worried about, onc said he will order a scan again in 2 months but i am scared.
Have been on Herceptin since May 2004 and the ef rate has gone up and down but this is the lowest it has been, i so want to stay on Herceptin, does anybody else have a problem with thier EF rate?
Thankyou
Nikki

[Becky]

I dropped 10 points but have been stable since then. You are above 50 so you can stay on Herceptin. Just get another one in 3 months to make sure you are above 50.


Warm regards

Becky

I am also in that position. My muga score dropped 11 points to 51 and I am exhausted all the time. I see the onc next week and was supposed to get another test before that time but haven't been booked as yet. Would this be the cause? I increased my CoQ10 but wonder if there is anything else I can do?

Thanks,

Cathy

[Rupali]

U should see a cardiologist and ask him about Coreg and Lisinopiril. Take COQ 10 like 400mg a day and eat lot of wild salmon. Walk a lot and drink no alchol and no smoking.

[sadie]

Just had my Muga. Dropped from 71 to 55 after 4 AC treatments.
Notation on report states they suspect possible malfunction of equip or test was done incorrectly.
They suggested I get an echocardiogram to confirm or dispute Muga results.
If it confirms, then I can't get Herceptin; If it disputes, then I go on to have my Herceptin/Taxol 12 week regimen.
My Onc said that getting Herceptin when rate is 55% is not a good thing because it would drop further. She did say anything over 50 is still in the normal range.

My Muga results also went from 68% to 54% in the first 3 months of my Herceptin treatments. I was concerned so my oncologist ordered an echo test which confirmed 54% - WITHIN NORMAL PARAMETERS. I was concerned because even though I was within normal limits, it did go down about 20%. I stayed on the Herceptin, increased my exercise and started taking COQ10. After 3 months, I was tested again and now I am at 64%. The Mugascan test has many variences. Please try not to worry and keep getting tested.

[sadie]

Thank you "Guest".
I did not realize that the damage could be reversed using such simple measures!
I was always afraid to take anything new (including something simple like vitamins).
I'm pretty new to this and everything makes me nervous: Even food!
It's to the point that I don't know what to eat or drink anymore unless I get the drs ok.
After reading so many positive posts regarding COQ10, I'm going to start taking it.
AND I'm going to start exercising on a more regular basis. (I've even been afraid to do that!)
Am I being a sissy or what!? lol

[suniskye]

Hi. I'm new here. I started getting Herceptin and Taxol in August every week for 12 weeks. My last of that was 11/29th. Then I began Herceptin alone every 3 weeks 2 days before Christmas. My scan before beginning Herceptin and after Adrinamycin/Cytoxin was 75% (Sept.) My November 30th scan was 50.5% and my January 31st scan was 42% ... I was to get the Herceptin after that scan the same day. However, the doctor called the infusion center and told me he could not give it to me because the protocol is 50% for Herceptin.

On December 29th, 1 week after getting Herceptin I went to the emergency room and was there 8 hours ... sent home saying nothing was wrong. On Christmas Day, my feet swelled up so bad I had to take my shoes off and I began to have shortness of breath. They put me on dieuretics. I got my second dose in January and even on the dieuretics my feet still swell at times and I still get short of breath at times. I was thinking I was crazy after going to the ER.

I have been trying to find out when to worry ... should I worry that my percentage is only 42% ... the doctor said not to worry they will do another test in a month (the onc) ... he also said that at 42% there are no symptoms. However, I get short of breath and have swelling in my feet and he says that could be from something else. I know in my heart it isn't because I've never had those problems before.

Anyone else been through this? If so please email me at diana_k@comcast.net I would be interested is hearing from you.

Thanks,
Diana

[BonnieT]

Diana
I e-mailed you my response.
BonnieT

[Lolly]

Ladies, I've had my LVEF drop from a high of 68% when I started Herceptin in 2001 to my last reading of 49% a few months ago. It hovered in the mid 50's for most of that time, just recently has dropped and as I'm having no symptoms, and my onc says he's not worried yet even though less than 50% is considered sub-normal.

I've taken Co-Q10 regularly in the past to improve my ejection fraction, as much as 300mg daily, but since I'm now on chemo I only take 100mg as the anti-oxidant effect is counter productive to chemo. Once I'm done with this round of chemo, I plan to up my dose of Co-Q10 again and expect my LVEF to improve.

If you Google CoQ-10 you'll find many references to it's documented ability to repair heart function specifically related to congestive heart disease which is why many of us on this site who are on Herceptin therapy use CoQ-10 as a supportive therapy.


<3 Lolly

P.S. IMPORTANT REMINDER: Too much CoQ-10 while ON CHEMO is not a good thing as the strong anti-oxidant properties can be counter productive to killing cancer cells by actually helping them REPAIR the damage done by chemo. Obviously not what we want, so be careful of the dosage while on chemo. Usually 100mg as a supportive dose to maintain LVEF is what has been recommended by others on this site who have done much research on this subject. After chemo, when on just Herceptin, up to 300mg is considered safe by those here and has been shown to be therapeudic in studies.

[sadie]

Yes, My onc said anything below 50% is not in the normal range.
If my Muga results are correct, then I'm at 55% after just having my AC treatments.
The dr. told me she would not give me the Herceptin because it would make me drop even more and she didn't want me to fall below the 50% level.
I assume she will have me tested in a few months to see if she could start Herceptin at a later time. I'm just crossing my fingers for when I get the echocardiogram done. Hopefully, it will dispute the results of the Muga scan.
I will really be disappointed if I cannot take the Herceptin at the scheduled times.
Suniskye, I would really complain to your onc about your shortness of breath and swollen legs again. Those are 2 signs that my onc kept checking me for and asking whether I've experienced it because she said those are signs of a problem with the heart. You could also ask what you could do to help the percentage return to a normal level. Those symptoms are something that I would not let slide. I'm new to this too, but when a doctor tells you that you don't have symptoms even when you do, then there's a communication problem somewhere.
Keep us posted.

[michele u]

Nikki,

Don't worry too much about it. My ejection fraction started at 62% and dropped to 47% by the end of Herceptin. I just had mine done again and it's back up to 55-60%. the test can do 5% either way, so if it's dropped to 50 you can say it could be 55%. I always had muga's then last time i had a echocardiogram. I think the echo's are better and easier because you don't need the nucleur injection. Maybe ask if you can get a echo next time!!

You might like to read the post on articles of interest on this site on the importance of omega three and six and balancing them to breast cancer.

You may also like to look up omega three / herceptin BREAST CANCER on the NCBI site / google etc.

Fat intake also figures strongly in vascular health etc.

RB

[suniskye]

Isn't it funny how different doctors believe different things? I am sorry to say, this was a reoccurrence for me. In 2002 at the age of 46, I had invasive ductal carcinoma, HER2NEU 3+, Elston Grade 3 w/comedonecrosis, hormone negative... tumor was only 9 mm and was found at Hopkins after I had been told to come back in 6 months everything was fine. For the first time in my life, I did not listen and went for a 2nd opinion and within 1 week was being operated on for having cancer. I had a lumpectomy, SENTINEL node biopsy and 6 weeks radiation. Chemo was not offered to me and in fact I was told that it was not necessary as it would not make a huge difference.

In April 05 I found a lump under my arm. It was fairly large. Within a week I found that I had cancer again, a local reoccurence to the lymph nodes in my arm. The cancer had been there the entire 2.5 yrs I thought I was in remission. I was not given any scans at all and was in fact told they do not do that unless there is a problem. I wish I had demanded one but hindsight is 20/20. Had I known that I would go thru this a second time, I would have had the anxcilliary surgery at the same time rather than a sentinel node biopsy. (Just a word of advice here from someone who was extremely disappointed that my lymph node biopsy happened to be falsely negative.)

I had 10 nodes removed in May 05 and anxcilliary surgery, Adrinamycin/Cytoxin every 3 weeks X 4 from June-August. I switched hospitals after the first round. I had had it with them. I had such severe infections and they blew me off and the first thing the new doctor did was send me to an ENT. My ear was so bad that it made me cry and they were talking about admitting me for iv antibiotics if the meds did not work. Fortunately, they worked. So in August I began Taxol and Herceptin. My muga was at 75% after adrinamycin before taxol/her. I had that weekly X 12. In November my muga was at 50.5% and I began Herceptin alone every 3 weeks in Dec. My muga this Monday was 42% and I won't ever be getting Herceptin again.

I can tell you I am not disappointed. The Herceptin made me feel really horribly tired. I've not been able to do much of anything except work then sleep. I have worked full time throughout this ordeal and had to change my hours once the Herceptin began in triple doses....I just could not stay awake for 8 hours. I understand that fatigue is also a symptom of heart problems.

Now, my onc told me that at 42% I should not be having symptoms. However, I have little egg shaped pockets of fluid at my ankles and somedays you cannot even see where the ankle is.

I am waiting to have another muga the end of the month. I am praying it stays the same or goes up now that I'm not getting Herceptin. I don't know what I'm going to do if it continues to go down because I am here to tell y'all I just am sick of all of this.

I somedays want to give it to God and forget about it.

Diana

[AlaskaAngel]

I am not on Herceptin and I do value the experience of those who are, but I'm a little uncomfortable with the uncertainties of traztuzumab's effects on the heart and advice to people who are new to it.

There are those on this site who are more acclimated to watching for signs of trouble than others are.

If it were me, I'd think about getting a cardiologist's opinion for consideration, at least until I had more personal experience with it and how it tends to work for me personally.

AlaskaAngel

[Becky]

Well said Angel


Becky

[Marlys]

I just had my 4th MUGA and it had improved from 63% to 72%. After reading these posts I decided to take COQ10 100mg daily. And then 2 weeks ago I started working out ( something I have never done in my life) doing the treadmill for 30 minutes a day and water aerobics every day for an hour. The purpose of the exercizing was originally to get in shape for the Race For The Cure in May. Now I think it is really helping my heart. Can hardly wait for my appt. with my onc next week to see what he thinks.
Marlys

[TriciaK]

As some of you already know, I started out this third round of cancer mets year and a half ago with a heart attack. Two arteries are blocked, and heart surgery was planned, but in doing a CT scan the lung mets were found. My oncologist said I would have had about 3 months if the mets hadn't been found, so the heart attack actually saved my life. I have never yet had the heart surgery, but am being monitored by a cardiologist and an oncologist. However, the cardiologist had never heard of herceptin! The oncologist felt the herceptin was so important he started me immediately after the FISH showed her2, and he had me do a MUGA after a couple of months which showed 58%EF. The cardiologist didn't ever think a MUGA was necessary, but a month or so ago when an echo showed 30% EF, he had one done, which agreed with the echo. SO my EF dropped considerably and the onc took me off herceptin. I had had 15 months of it by then and was NED, so we both felt it was worth it. My oncologist, who has been with me for 20 years, and whom I trust and can talk to, says not to worry about the low EF now, it is reversable, and it will rise in time and if I need herceptin again I can have it. I do have symptoms of congestive heart now: dizziness, swelling, extreme exhaustion, palpitations, shortness of breath, coughing and nausea, plus an x-ray ordered by my onc shows the possibility of fluid in my chest cavity. I am on Coreg, Emdur,Plavix, diuretics and Aquinel, and am able to rest as I need to and do mild exercise and eat healthy food. I am not fearful about the heart problems, but I do feel the cardiologist is not on top of it as much as the oncologist. Both seem to feel the heart surgery is a last resort and would be too hard on me now. Sometimes I get the feeling the cardiologist expects me to die from the cancer and so the heart is not that important! Why am I telling you all this? Because I think we can only do the best we can do, and to stay as positive as possible is very important. Everything I read agrees with my onc that the herceptin damage is reversable. I will have another echo in two weeks, plus a brain MRI(my first and just to check--no symptoms) and a chest CT to see if the possible fluid is from the heart congestion or possibly more lung mets. I am fortunate to be retired now because I know I couldn't keep up the schedule I used to. My heart goes out to those of you who have to work still, and I know how fearful heart problems can be ontop of BC, but I repeat: learn all you can, do all you can, work with doctors you can trust and talk to, and then turn it over to God. It's hard not to worry, but worrying and becoming weak with fear is counterproductive. That doesn't mean we shouldn't express our fears and share them here! Remember, fear and faith cannot exist at the same time, and fear will debilitate faith. Someone once said that FEAR is False Education Affecting Reality! Concentrate on what builds you up, not tears you down. This site (and the things we learn here) is one of our best weapons we have. I am so grateful for the love and prayers we share here, too, and that we can draw strength from each other and each others' experiences. Thank you all! Hugs, Tricia

[Nickii]

My ejection fraction went down to 48% after 12 rounds of herceptin. I had terribe symptoms of CHF. I had dyspnea on exertion (couldnt walk 10 feet without getting short of breath). I stopped my herceptin and after one month my ejection fraction went back to 62% and no more symptoms of congestive heart failure. Im off the herceptin now. I feel really good. Studies are showing that less may be as good as more. So no more herceptin for me. Good luck to all of you and monitor your heart closely. Also, go with your symptoms.

Nickii

[saleboat]

I also had my MUGA drop-- from 78% to 68%. The Oncs seem to think that my first two MUGAs (both 78%) may have been read differently than the last one, and that the 68% is a more accurate read of things. I know I am well in the range that I need to be, but it is troubling to think that one may be incurring some long term damage. (Especially since I have about another 60 years to live...I'm 35 and EVERYONE in my family lives well into their 90s.)

I'm glad to hear that it can prove to be reversible for some. I hope that there's more news from ASCO about Herceptin. I wonder if for early stage disease that the Carbo/Taxol/Herceptin might be the regimine of choice-- seems easier on the heart than AC (although there may be a benefit to the dose dense regimine). Who knows.

Thanks for sharing your experiences.

Jen