Ejection Fraction down

[Susan McQ]

I've had 4 Mugas since I started treatment in Feb '06. All results were in the 60's. I had 5th Muga last month and Onc said the result was 49. I'm scheduled for another Muga in 2 weeks just to see if the results could be inaccurate.

Anyone have Muga result that were wrong? Or had their EF increase with a repeat scan?

Susan

Susan,

My first result, 59%, came from a muga prior to herceptin or chemo. Next muga three months later was 64% and the one after that was 63%. Also, during the third muga (63%), the first result was 57% so the tech redid it, and it went up to 63%. My cardiologist told me that results can vary quite a bit. Also, in March 2006 before I was diagnosed with breast cancer, my LVEF was 69%, so my LVEF results, prior to taking any heart-damaging drugs, have varied by ten points.

So, don't get discouraged. This latest reading may be wrong. And even if it's not, cardiologists report that, with herceptin, LVEF usually goes back up when patient comes off herceptin. Good luck!

[Merridith]

Hi Susan:

A MUGA is not absolutely accurate. It is accurate within a certain range.

If you have had a sudden drop in MUGA, it could be related to it's accepted standard variability. It will take two MUGAs showing a similar significant drop before it is significant.

If you want to assist in improving/maintaining your MUGA - do aerobic exercise.

The MUGA scan visually measures the amount of blood that your right ventrical can pump. 60% means that your heart pumps 60% of your blood in the chamber with one "pump". That part of the heart muscle is exercised and conditioning is improved if you do aerobic exercise.

To make an improvement you must exercise 1 hour 4 days in 5 days. On the 5th day you can rest. Your rest day is as important as your 4 exercise days. You should also take a rest day the day BEFORE your MUGA so that your heart is rested for the test. You don't need to do vigorous exercise, but you need to maintain your heart rate at around 120 beats @ minute for the one hour time period. It's easiest to keep track of it if you use a heart monitor.
You can "cheat" a little bit by drinking something cafinated just before going to the MUGA - say a coke or a coffee - this might improve it slightly.

Regards

[Susan McQ]

I had a repeat Muga last Tuesday. Med Asst called to let me know that they will be stopping my Herceptin per Dr's orders. She did not give the the EF percentage. My monthly appt with my Onc is on April 3rd. I have to assume that my EF has not increased or has gone down even more.

I have been able to complete 40 weeks of the 52 weeks. I know there have been trial regarding the length of time for taking herceptin. I just hope mine was long enough.

Susan

Sorry Susan,

But forty weeks is pretty good; remember the Finher study was only nine weeks and the results were very positive.

Also, it will come back up. Lots of proof for that. The exercise option sounds good; I think I'll do it myself.

[StillHere]

Hi Susan
I was symtomatic 6 mos after starting Herceptin. My legs felt like lead and I was becoming short of breath. Had an Echocardiogram of 40. Discontinued Herceptin and my Echo was back up to normal 10 months later. I too am nervous about having to stop Herceptin early. My oncol told me it was important to walk every day. I did not take him seriously. At the time all I could do was work 8 hrs and sleep 10 hrs. I started walking during my lunch hour, but stopped when I was getting behind at work. To all my sisters out there on Herceptin. Please take getting enough exercise serious! It is really important. Your health is more important than any job. Peace, Karen

[MJo]

StillHere--- Your post really hit a nerve. You stopped walking because you got behind at work. There is a gym in the building where I work and if I walk around it 12 times I've done a mile. A coworker commented that I would be "sweaty." Yeah. Sweaty and alive. Please put your survival and health FIRST. Sorry I shouted, but I hate it when it seems we feel -- or our company makes up feel -- that we have to put work above all else, including our health.

[Becky]

Not only that but it has been proved that walking 3-5 hours per week increases survival (21% for ER/PR+, 35% for ER+/PR-, 38% for ER-/PR+ and a whoping 44% for ER/PR-) so get those walking shoes on. A low fat diet study adds to that survival by another 21% but those walking shoes really do it. And the weather is getting good too so all that oxygenation is also a plus.


And the sunshine's vitamin D - just another boost there too. And smiling alot makes you feel better.

[momdeeco]

I had an appt. with cardiologist today, regarding my muga of 43%. (Previously 60% 6 mo. ago) He wants to do an Echo (I'm o.k. with that) but also wants to put me on Vasotec. My BP was 102/80. I ask him about repeating the Muga in 6 weeks, but he said no Maugas are very accurate. (Last Herceptin was a week ago, and cannot go back on it. I had 7 doses) Cardiologist didn't even know what Herceptin was. Is this unusual? He will put me on Vasotec, repeat Muga in 4 mo. and then another office visit in 6 mo. Just seems to adding another med that I may not need. When I saw the oncologist she said it wasn't that bad. Of course I'm confused and seems I have to "fight" for everything I think is right. I know I am not a cardiologist, but do alot of reading on this site. Has anyone been in a similar situation?

Karla--I had an echo last week and the LVEF reading matched what I had with Muga, so I would think the echo, which is less invasive, can confirm if the Muga is correct.

I've been on BP medication for almost twenty years now, including Vasotec, my first med. When I began treatment with herceptin, my oncologist and I discussed what would happen if my LVEF went too low. He said I would be given BP meds, which seemed strange to me, since I'm already taking them, but apparently that's the protocol. My cardiologist, who ordered the recent echo, seemed to know about herceptin and heart toxicity but I know that he also called my oncologist while I was getting dressed.

Since you're uncomfortable with his opinion, will your insurance permit you to see another cardiologist for a second opinion, perhaps after you've had the echo? Good luck in whatever you decide and congratulations on your great BP. I'm envious.

[Susan McQ]

Well, had an appt with my oncologist today, who reassured me that I will only be taking a break from herceptin. Muga last week went down to 47. I have a repeat Muga scheduled for the end of April. Then I see my Onc the beginning of May. If it doesn't increase enough, then we do the whole thing over again the next month. We will continue to do this until it increases to an acceptable level. Once it increases enough, we will start herceptin again.

Susan

[Ora]

My Onc took me off herceptin after 6 months because my echo was down to 44%. I am hoping to build back up. He sent me to a cardiologist who put me on Coreg & HCT and told me to exercise but he didn't say how much and foolishly I have been exercising very half-heartedly (no pun intended). I too give too much to work and not enough to me, so I am going to really start working out and walking as the other ladies recommended. You hang in there too and we'll be back on herceptin soon.

[momdeeco]

Exercise is something I definately can improve on. I think I will wait for the Echo results and take it from there. Thanks for all the support! God Bless all of you!

[chrislmelb]

My score was on the way down so i joined a gym and started to take Coenzme QC10 and fish oil and it didn't drop any further. Good luck

[Susan McQ]

Well, you know you have had too many tests, when the techs in nuclear medicine recognize you by name and face. (3 mugas - 1 per month for the last 3 months)

Had anther muga this afternoon, this time I asked for the percentage before I left the department. In the last 30 days off herceptin, it has increased to 54% from 47. I'm back in the normal range. WOO HOO!

I see Onc on Tuesday, so we will see if he wants to see it increase more or if I restart herceptin.

Susan

[Andrea Barnett Budin]

To my favorite people -- Warriors on the path to Survival. Just saw my Oncologist/Healer who specilizes in nutritional supplements. I've followed his guidance in meditation and guided imagery and remain steadily in touch with my Essence, the Soul of my being (since my met in '98 into the liver). I see myself far into the future, well and happy and surrounded by family and friends.


His latest advice for keeping my EJ up to continue on Herceptin (as I have since '98) is to keep my heart strong w/ PERFUSIA 1 daily, Co-Enzyme 100 1 daily, ENADA 5 mg twice dialy and P5P50 (Pure-Encapsulations/better absorbed than B-6) 1 daily. I am also on high blood pressure meds (vasotec and Coreg) which existed prior to BC.

Hope this is helpful to you, as finding a doc/onc who specializes in BC and is an expert in vitamin supplements is a unique find and I feel blessed to be a SURVIVOR with help from various oncs, mastec, 2 rounds of chemo (Adrymiacin in "95 w/8CMF and Taxotere and Herceptin in '98/'99). Been on Herceptin every 3 wks '98-'02, triple dose every 3 wks to present -- with no mets since. EJ 50ish and holding steady, even with pericardial effusion since Taxotere (small) and notlikely to go away they now tell me. Which is fine my cardiologist says.

Stay strong and positive and keep on participating in your own wellness! We must be proactive, ask questions, double check everything and all the while think loving, compassionate, generous, grateful thoughts (which are full of healing energy) and will return to you, in accordance w/an as yet uncodified Universal Law! Swear it's true! Be well. LOVE TO ALL YOU BEAUTIFUL AND BRAVE SOULS, ANDI

[janet11]

I had a MUGA scan this morning and Herceptin this afternoon. Midway through the infusion, they got the results of the scan, and came in and shut off the Herceptin. This was a 6 week scan (because my last scan had dropped from 60% to 53%). This one was now at 49%.

I see my onc in 3 weeks and will find out what to do then. I imagine it'll simply be the end of treatment for me since I'm stage 1 and have gotten through 7 months of Herceptin. But will know more in 3 weeks (am on vacation the next 2 weeks... that's why the delay)..

Janet

[momdeeco]

Janet,
Your story is very similar to mine except I received 6 mo. of Herceptin. I also was getting a tx when midway through they came in and shut if off. My EF went down to 43%. Had a follow up Echo that was borderline normal. Cardiologist wanted to put me on Vasotec, but I didn't really see the need for more meds since I also was asymptomatic. Will have another Muga in 4 mo. Both cardiologist and oncologist said no more Herceptin since I was stage 1. Let me know what your oncologsit recommends.

[Susan McQ]

I was off herceptin for 1 month and my muga from last week was 54%. It increased from 47% a month ago. I start my herceptin again next Tuesday. I has received 41 weeks and we will finish up with 6 more treatments. After that, my onc considers me done. I'm ok with getting 47 weeks instead of 52.

Susan

[Joe]

The best time to take a MUGA scan would be in the last week before your infusion, if on a 3 week protocol.


Regards
Joe