MUGA Results - Herceptin on Hold

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BethS
BethS Member Posts: 10
edited November 2017 in HER2+ (Positive) Breast Cancer
I just got the news today that my MUGA test came back at 37%, a drop from 55% post-Adriamycin and pre-Herceptin. I was sent home without getting herceptin. I am scheduled for another MUGA in 4 weeks. If it comes back up, I will restart Herceptin. I am somewhat shocked, no symptoms at all.

I am stage 2, finished 12 Taxol and Herceptin and was on number 6 Herceptin every 3 weeks.

If anyone has any stories of this happening to them, I would love to read them.

Thank you,
Beth

Comments

  • LittleFlower
    LittleFlower Member Posts: 405
    edited May 2007
    Beth,
    Though I haven't had to stop Herceptin, My Muga slipped last scan, and in concern i posted on these boards. Some ladies suggested that drinking fluids and keeping hydrated helps increase the ejection fraction that they measure on the MUGA. Not sure if this is true or not but something to consider. Hoping your next MUGA is much improved,
    LittleFLower
  • mindywood
    mindywood Member Posts: 6
    edited May 2007
    Hi Beth,
    I have had the same problem off and on through treatment. I just now finished my last herceptin treatment (hooray!) I got all but my last 2 treatments in because my MUGA kept dropping. Last one was at 42% so my onc just decided to stop. I had to take many breaks and was on hold as long as 4 months during the whole "year" of treatments- but my heart always seemed to rebound to 50 or 55% and then I'd go back on. My history: I started with weekly herceptin and taxol for 12 weeks, then surgery, then epirubicin, cytoxin and flurourecil (sp?)then the herceptin every 3 weeks.
    I too felt fine and still do so it's kind of weird. My onc had me see a cardiologist and he put me on Coreg to reduce the load on my heart.
    Hang in there - i know it's frustrating! I have always been active: walking and rollerblading and such, try to eat right, am not overweight, etc. etc. so I too was shocked. I'm just glad they keep a close watch - it would be sad to be cured of cancer and then keel over of heart failure!
    I will be thinking of you - let me know how you do! Mindy
  • DebbieB
    DebbieB Member Posts: 161
    edited June 2007
    Hi Mindy,

    I just got out of the hospital with congestive heart failure which the cardiologist attributes to adriamycin I received 5 yars ago. My ejection fraction is 24%. My understanding is that when your ejection fraction drops, your heart is not pumping as well as it should which can lead to fluid on your heart and/or lungs which happened to me. I do know that I was told NOT to go overboard drinking lots of fluids. Coreg is one of the 8 drugs I am on to strengthen my heart.

    There are a number of ladies out there in medicine who may be able to verify whether or not additional fluids help or hurt. DOC?

    I don't want to scare you. I just don't want anyone to go thru what I have gone thru in the past 2 months. I'm 51, not overweight, do not have high blood pressure or cholesterol. I felt great before all this. Then I developed shortness of breath which I thought was from bronchitis (it wasn't!). I actually feel good now. I'm just waiting to see if the drugs are going to work.

    Debbie
  • maryannecb
    maryannecb Member Posts: 1,453
    edited June 2007
    A drop in your MUGA ,50% is an early sign of possible heart problems. Your doc will hold back the Herceptin until your MUGA improves.

    You are right Debbie when you have CHF your heart is not pumping fluids effectively. Extra fluid puts added strain on the heart and will worsen the failure.

    Sorry about your heart problems Debbie, it sucks that you have to suffer this added insult due to your treatment. With treatment your EF will likely come up although maybe not to normal.

    Fists up!
  • janet11
    janet11 Member Posts: 262
    edited July 2007
    Mindy, how long did it take to 'rebound'? I've been off herceptin for 2 months and my MUGA is still going down (now 44%). (thank goodness it's not dangerously low however).

    Janet
  • esserbre
    esserbre Member Posts: 82
    edited August 2007

    I've been turned down for my herceptin treatment twice now, MUGA is at 47. I get another 4 week break and then he'll test it again, if no improvement he'll take it to rounds he says and discuss what options I might have. I've had AC, Taxol, radiation to left side after mastectomy, and had 4 treatments. Kind of disappointed but I see I'm not the only one.

  • LittleFlower
    LittleFlower Member Posts: 405
    edited August 2007
    Oh Brenda,
    Sorry that you're "on hold", I can't offer any helpful advice really, but wanted to offer some support and acknowlege your disappointment. I can't really offer any advice, i've read that drinking alot of fluids help raise the Muga results. You've done alot of treatment as it is, maybe we'll just consider this a welcome little break and keep praying that the next MUGA is gonna be better! Keep us posted.
    LittleFlower
  • Myrajuc
    Myrajuc Member Posts: 117
    edited August 2007
    Should I worry if I'm 52 or 53%? I feel fine. I've gone back to the gym and have started attending aerobic classes. Of course not as powerful as I used to after almost a year of treatments, but getting there. I'll have my MUGA mid-September. I started Herceptin after radiation mid-June. (My last MUGA pre radiation was at 52%; stopped during radiation).

    Thanks.
  • Denny123
    Denny123 Member Posts: 1,886
    edited August 2007
    I have been on Herceptin for almost 4 years and will be on it for life. My onc. doesn't worry at all about an EF in the 50's.
    BTW, I have recently discovered that an Echo is just as good as a MUGA and doesn't require that I have the IV's in my feet anymore! Echo's are so easy-like a sonogram that only takes 10 minutes.
  • madarin
    madarin Member Posts: 21
    edited August 2007

    Pardon my ignorance as I am newly diagnosed, but what is MUGA?

  • Denny123
    Denny123 Member Posts: 1,886
    edited August 2007

    A MUGA scan measures the ejection fraction of the heart which can be compromised with the use of Herceptin and Adriamycin. A solution is injected into the veins for the test.

  • moredug
    moredug Member Posts: 2
    edited August 2007

    How often do your Onc. check MUGA scans? I had one pre-Herceptin (normal)about 3 mo's ago.

  • Denny123
    Denny123 Member Posts: 1,886
    edited August 2007

    I have my Echo's (better than Muga's) every 6 months.

  • DebbieB
    DebbieB Member Posts: 161
    edited August 2007

    My cardiologist about had a cow when he found out that my onc was not doing regular muga's. Knowing what I know now about the damage chemo can do to your heart even years later, I would have demanded muga's at least every 6 months. I think if I had done that I could have caught my heart damage much sooner before my ejection fraction had gotten down to 24%.

  • madarin
    madarin Member Posts: 21
    edited August 2007

    Thanks, Denny. I had my baseline echo last week, starting Herceptin in 2 days...

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2007
    Hi Gals,

    I got the results from my ECHO today when I went for my Herceptin infusion. Bad news. My ejection fraction has gone from 67% to 36%. Just a wee bit alarming.

    I am now off Herceptin and being seen by a cardiologist who is giving me a stress test, blood tests, and some meds to try to improve my heart function. He said no more Herceptin for me. I received three months of Herceptin total.

    I also had Adriamycin and rads to the left side. My first ECHO was just before chemo started in March.

    This is quite upsetting!

    Miss S
  • esserbre
    esserbre Member Posts: 82
    edited August 2007

    I had good news yesterday, my EF went back up to 57 so I was able to have my herceptin treatment. I will be retested in November -- 4 more treatments before then. I hope that's not leaving it too long, although it took 3 months of treatments to make it drop to 47.

  • sha67
    sha67 Member Posts: 3
    edited September 2007
    After 12 weekly doses of Herceptin with Taxotere, I just had a MUGA (Multiple Gated Acquisition Scan) with results of 45. My previous MUGA (after Adriamycin and before starting Herceptin) was 72.

    I've seen a cardiologist, who did an echo to confirm the results and put me on Altace to try to improve my heart function. She'll recheck the echo in 4 weeks, then we'll all decide if I can go back on Herceptin.

    From what I understand in talking to my oncologist, cardiologist, and my husband (an ER doctor), MUGAs are primarily used by oncologists for measuring heart function because of the specific dangers of certain chemotherapy drugs (i.e., Adriamycin) and now Herceptin. MUGA's give a more precise measure of the ejection fraction (pumping ability) of the heart than a traditional echocardiogram. An echo gives more of a range (for example: 50-55%) rather than an exact number, but is still useful in determining heart function.

    I can say this - it really helps to read, read, read! Get on the internet and read the information and results from the Herceptin studies (there are many). Be educated so you can partner with your doctor in making treatment choices and understand what's going on. The protocols for Herceptin treatment (and its complications) are still pretty new and some docs may stick more rigidly to them than others.
  • esserbre
    esserbre Member Posts: 82
    edited September 2007
    I have been on Herceptin for almost 4 years and will be on it for life. My onc. doesn't worry at all about an EF in the 50's.
    BTW, I have recently discovered that an Echo is just as good as a MUGA and doesn't require that I have the IV's in my feet anymore! Echo's are so easy-like a sonogram that only takes 10 minutes

    Hey Denny,
    I didn't know people could be on herceptin longer than a year, you are doing really well on it, sounds like. Good for you!
  • EachDay
    EachDay Member Posts: 400
    edited September 2007
    Beth, you posted this awhile ago and I was wondering if you were able to get back to the Herceptin?

    I had to stop my Herceptin twice because my ejection fractions went a little lower than what they had been (never below 50%) originally and my oncologist wanted to be safe. Both times the fractions went up and I was able to resume. It meant that my treatment took a little longer than originally planned, but that was fine with me. I was on it for one year (just finished May '07) and had all 18 treatments. I am so pleased that oncologists and cardiologists are religious about scheduling these scans.

    My cardiologist actually prefers echocardiograms to MUGA scans.

    I have recently heard that even 6 months of Herceptin is considered a good amount which is good news for those who are unable physically to receive a full year.
  • esserbre
    esserbre Member Posts: 82
    edited November 2007

    Well, I'm going for my MUGA again tomorrow, crossing my fingers for good results so I don't get held up on my Herceptin again, but at least this time I won't be surprised if it's low.

  • CuriousC
    CuriousC Member Posts: 3
    edited November 2007

    I finished chemo and then a year of Herceptin 18 months ago. However, since I was on a trial for the chemo, I recently had a follow-up MUGA scan. It had dropped from the high 50s soon after finishing Herceptin, to 50 a year later. So my onc sent me for an echocardiogram which he implied was a better measure. I got 60 on that. So, I would suggest that if you have to stop Herceptin because of a MUGA score, you should ask your oncologist whether it can/should be confirmed with the echocardiogram.

      

  • esserbre
    esserbre Member Posts: 82
    edited November 2007

    Heart test down 16 % -- at 50, too low for the 3rd time my onc said therefore no more herceptin for me.  He feels that the 6 months I did get will put me in good stead.  Decided to go out for dinner to celebrate no more needles, intravenous for awhile.  Why not?

  • nagem
    nagem Member Posts: 353
    edited November 2007

    Yes, there are studies that suggest that a few weeks of Herceptin is sufficient, plus with your hormone receptors, you have another option for treatment. I think celebration is in order!

  • esserbre
    esserbre Member Posts: 82
    edited November 2007

    Thanks!  Glad to be done with that hospital trip :)  I'm glad I took them a tray of fruit that day to say thank you.  Didn't know it was going to be my goodbye treat.  Now just have to deal with all the lovely Arimidex SE's but glad to be able to have the treatment like you say. 

  • SCYPTWG
    SCYPTWG Member Posts: 2
    edited August 2016

    Looks like this is a pretty old topic, but maybe we can get it started again. I am (was) HER2+, stage 2.5, and took a combination of Taxol & Herceptin. I'm all done with the Taxol, but need another 12 months of the Herceptin, but onc was waiting for better MUGA results.  My ejection fraction rate went from 44 to 62 - so all clear. But now I'm concerned about going through that same mess every couple of months.  Has anyone stopped the Herceptin mid-way, and still had good results?

    Any feedback is helpful - not getting clear answers from onc or cardiologist

  • Zena32
    Zena32 Member Posts: 5
    edited November 2017

    hi there,

    I just had my muga rechecked. So going into this I was at 66. I did 4 rounds of taxol and that c something chemo. Ended Jan of this year. Been on herceptin since Feb. my current scan was 54. They said since its a 14% drop I am good to go. It’s 16% or greater that they take a break. I’m getting sent to a cardiologist for precaution. Honestly, 8 think I want off it. It’s frustrating being in it knowing it damage and that will be something I am going to have to deal with after.

    How is it going with you

  • stephincanada
    stephincanada Member Posts: 228
    edited November 2017

    Zena,

    They can put you on heart supportive medication to boost your LVEF. Also, exercising as hard as you can to increase the heart's pumping strength is helpful. It worked for me. Don't give up on Herceptin

  • stephincanada
    stephincanada Member Posts: 228
    edited November 2017

    Zena,

    They can put you on heart supportive medication to boost your LVEF. Also, exercising as hard as you can to increase the heart's pumping strength is helpful. It worked for me. Don't give up on Herceptin!

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