MUGA Scans

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Alaina
Alaina Member Posts: 461

I'm just wondering if there is anyone out there, or any protocol standard, that has someone with HER2+ breast cancer NOT getting a MUGA scan pre-chemo, post-chemo, during year-long Herceptin infusions.

I am a relatively healthy (minus the breast cancer) 39 year old with Stage 3B IDC.  I had PT and CT scans, and a breast MRI prior to starting chemo (neo-adjuvant).

I asked my oncologist about the MUGA scans seeing as he didn't order one before I started chemo (Taxotere, Carboplatin, & Herceptin every 3 weeks, 6 sessions).  He said that because I wasn't getting Adriamycin, and that Herceptin is very well-tolerated heart-wise with TC, it was not necessary for me to get MUGA scans at any point during my treatment with Herceptin.  He also noted that I was in good health pre-chemo and am tolerating chemo extremely well in terms of limited other side effects.

I'm just curious if there is anyone else out there who never got a MUGA scan while on Herceptin and/or if this is a normal path/protocol with someone who is relatively healthy and getting Herceptin.

It just seems from reading here and on other boards, MUGA scans are a GIVEN for ANYONE getting Herceptin.

A little confused and concerned.

Comments

  • NanaA
    NanaA Member Posts: 293
    edited July 2009

    alaina - I did not have muga scans, I had an echocardiogram before I started herceptin and one every 3 months after.  So far my rate has not changed.  It is 72 and can drop to 50 before they would take me off herceptin.  Annette

  • orange1
    orange1 Member Posts: 930
    edited July 2009

    I got only a pretreatment MUGA (received no MUGA on treatment or post treatment). I also had TCH (6 cycles) but was 46 at diagnosis.  I have never heard of someone not receiving a MUGA at some point.  In the only large clinical study where TCH was tested, 1056 patients received TCH.  Out of these there were 0 cases of cardiac related death, 4 cases of grade 3/4 heart failure and 89 cases (8.6%) of patients with a >10% relative LVEF decline (left ventricular ejection fraction - a measure of your heart's ability to pump blood).  From what I've read, heart damage due to Herceptin alone tends to reverse itself unlike heart damage from Adriamycin (the A in AC TH). 

    Maybe some of the women who were treated more recently can pipe in - maybe the standard of care has changed.

    Good luck with the rest of your treatments.

  • Alaina
    Alaina Member Posts: 461
    edited July 2009

    Thanks for your input ladies!  Those statistics make me feel much better Orange1.  I think I'll ask my primary care for a echocardiogram "just because."

  • Denny123
    Denny123 Member Posts: 1,886
    edited July 2009

    I am on Herceptin for life and it has kept my liver mets in remission for over 5 years.

    I get echocardiograms every 5-6 months, and my onc fees that they are very necessary.

    Denise

  • kim40
    kim40 Member Posts: 904
    edited July 2009

    I'm starting Herceptin on Monday and had a MUGA scan about a month ago and my score came back as 70%!  The onc told me that I will be getting another MUGA after every 3 infusions just to be sure there is no heart damage.  He also told me that if there is, it is reversible.

  • DebbieB
    DebbieB Member Posts: 161
    edited July 2009

    Alaina,

    I would demand an muga scan.  Herceptin can damage the heart although it doesn't appear to be as toxic as Adriamycin.  I went thru AC chemo 8 years ago at age 45.  My onc didn't do any scans and when I asked him about them, he said they were expensive.  I told him I had fantastic insurance and had more than met my deductible and out of pocket.  But he said he would rather go by symptoms I might develop.  Needless to say 6 years later at age 51 I developed congestive heart failure and cardiomyopathy from the Adriamycin.  I have permanent heart damage in my left ventricle that my cardiologist said was from Adriamycin.  I wish I had demanded a muga scan and then if he still said no, I would have gotten another onc. 

    When I was dx'd with bc, I researched and tried to find out all I could about my dx.  I knew adriamycin could cause heart damage.  But in all the research I did and questions I asked, it never dawned on me that I should have had mugas and I get so mad at myself for missing that.  But then I get really pissed at my onc, because I'm NOT a doctor.  I shouldn't know all this.  He should.   I think sometimes we trust doctors too much.  I know we need to take some responsiblity for our own healthcare.  But are we supposed to know it all?

     Debbie

  • orange1
    orange1 Member Posts: 930
    edited July 2009

    DebbieB - I'm sorry you have to endure another rotten disease.

    I think Adriamycin is starting to be recognized for its ability to cause heart failure years after treatment ends.  With Adriamycin, I'm not sure that a MUGA will pick up the damage because it sometimes doesn't manifest itself until years later.  Thats why so many oncs are switching from the AC TH to the TCH regimen, especially for lower risk patients.

  • kimbly
    kimbly Member Posts: 398
    edited July 2009

    I was diagnosed in Nov 2007 and went through 6 treatments of TCH.  I had a pre-treatment Muga and then one every 3 months until I was finished with the chemo and Herceptin.  I would demand this scan.  I mean you are already going through cancer why risk heart disease... I was 46 at diagnosis.

  • Alaina
    Alaina Member Posts: 461
    edited July 2009

    Today was my last chemo! I will start Herceptin-only on August 14th.

    Talked to my oncologist again today, and I will have a MUGA scan on Tuesday!

    Thanks everyone!

  • Gina_M
    Gina_M Member Posts: 294
    edited July 2009

    Good for you Alaina!  I'm glad you pushed the issue.  I just finished my last Herceptin this week and had a MUGA before my first infusion, then every 3 months after.  My onc. says otherwise perfectly healthy people (I'm a runner) can be affected by the cardiotoxicity at any time during the treatment with Herceptin.  If they catch your MUGA declining significantly, they can give you a break until it returns to normal, then resume the treatments.  Any damage is reversible, but not if it`s so severe it`s fatal.  So I was told the MUGAs were critical and that I should not get my heart rate higher than around 130 during the time I was on Herceptin.  All went well for me, my MUGAs started at 78%, then went to 77%, then 75%, then 74%, then to 73%, then I was done.  I`m supposed to give it about 3 weeks then start aerobic exercise gradually.

    Gina

  • Alaina
    Alaina Member Posts: 461
    edited August 2009
    *UGH-A* MUGA!!!


    Ok, so after (reasonably) questioning my oncologist several times as to why I had not gotten a MUGA scan of my heart function BEFORE I started chemo with Herceptin, he finally ordered the test. The test was scheduled for Tuesday morning.

    I arrived to the hospital running a little late, only to be confronted by a line of people in the Admissions areas (you have to admit yourself for any test in Nuclear Medicine). Got up to the NukeMed area and waited some more. They were crowded also.

    I finally got around to seeing the tech, and she explained that she would be sticking me with a rather large needle to withdraw a little bit of my blood to mix in with the radioactive isotope that would then need to sit in a special "area" for 30 minutes, only to be RE-injected into me later for the scans. Ok.

    I asked if she could use my PowerPort, and she said no, she would have to find a vein in arms or hands. I wished her luck and started praying. She was not successful, and the supervisor came over and after about 30 minutes of conversation and me trying to ignore her rather precise and determined efforts to get one of my veins to cough up some blood, she struck red gold! She taught me a nursery rhyme that we sang together "Little Jesus Lost & Found, please help bring this vein around!" LOL!!! She was truly compassionate in making a not-so-great procedure tolerable.

    I waited while my blood danced with the isotopes and finally got called back for the scans. They were to take 3 pics of my heart and each pic would take 15 minutes. Ok.

    But of course, my glowing blood had to be injected BACK into me before any scan could commence. The selected vein was right next to the one that was blown out 4 months ago on the top of my right hand. To say it hurt can't even begin to describe it. For 20 minutes, I lay on top of a narrow bed, arm out, one tech holding my arm still, while the other nurse very PAINstakingly and slowly pushed my thickened blood back into my hand. All I could do was cry while she hummed and we both prayed the vein would hold out, because if it didn't, the whole process would have had to start over.

    The isotopes got in and the scans could begin. *whew* I tried to lay as still as possible, even though the side effects of the chemo were causing me to have random tremors in my hands, arms, and legs. And the longer I lay on that narrow bed, the more my lower back started to hurt. The first scan had errors, so she had to start that one again...another 15 minutes.

    It was a very long morning. Hopefully I'll hear the results of the scan sometime this week.

    I enjoyed my mini-vacation in White Stone, VA! It was nice to get away and do literally nothing for 3 days. Ok, I did shop. They have wonderful little clothing, jewelry, and shoe boutiques down there and I had fun finding unique items for myself and friends. And I needed some more comfortable shoes seeing as even though my swelling has gone down, my feet apparently have grown at least a half a size! Color me NOT HAPPY!

    But there's no place like home and I'm excited to be back!

    As we embark on this next phase of treatment, I humbly ask each of you to not only pray for me, but to also pray for my parents. They each have their challenges coming up, and this is the time I'm supposed to be able to take care of THEM. But I can only do so much at this juncture, and it's going to be a challenge to balance their individual needs and mine and the thought of it alone just stresses me out. I have a great support system for which I'm truly grateful, but all the same, I ask for your prayers.

    Between work, doctors appointments for my Mom, scheduling pre-op appointments for myself, and travel, I have busy week ahead. I'm looking forward to it! My biggest annoyance at the moment is a nose that will NOT stop running! I know I have no nose hairs left, but really, REALLY?!?!?! *sigh*

    I'm hopeful that the worst of my chemo side-effects are over at this point and I can start striving towards my "new normal."

    Will let you know when I get there! *sniff*

    Alaina

  • cmharris59
    cmharris59 Member Posts: 496
    edited August 2009

    When I started my Herceptin treatments after my AC my heart scan was in the high 80s. It dropped to 44%. Now one year later it has come up to 55%. I was very active prior to my dx and tx. I was 48.  I have lots of health issues now from the chemo.  I wish you luck with yours. They have left my port just in case they decide to finish my Herceptin. We discontinued it after 3 mths due to heart trouble.  It has been a year since we stopped tx.

    Good Luck!

    C

  • Voltie
    Voltie Member Posts: 7
    edited August 2009

    I also had the same chemo treatment as you; but had 3-4 MUGA's.  I had 3 - 4 Herceptin treatments left and had to discontinue due to the results of the MUGA.  It was at 53%.  I had finished the chemo Jan 8th and was having Herceptin every 3 weeks.  Hercepin can cause heart problems if you look it up.  I would suggest requesting it.  I believe taking Herceptin weekly vs every 3 weeks is better.  I noticed more things once I started receiving Herceptin every 3 weeks with 90 minutes infusion such as muscle aches/pains, tiredness.  DId not have any muscle aches/pains while receiving it weekly.  I believe it has to be the dosage amount.  I now feel like I have artritis.  I did notice getting more tired and it now makes sense if my MUGA was at 53%.  Good luck - keep us posted - I'd be curious.

  • janet11
    janet11 Member Posts: 262
    edited August 2009

    I had MUGAs during Herceptin, and had to discontinue the Herceptin due to low LVEF thanks to the tests.  Then I went to a cardiologist and he said he prefers echocardiograms.... MUCH easier on me too, so I was happy with that.  Anyway, it took 2 years for my heart to get back to normal after just Herceptin (I was on TCH).... and if we had continued the Herceptin without knowing that it was causing problems, who knows what would have happened.  I'm glad you're getting your tests now.

  • carcharm
    carcharm Member Posts: 486
    edited August 2009

    Did you get an echocardiogram? I would feign being short of breath next appt and you may just get one. I can't imagine not having something.

  • cyalata
    cyalata Member Posts: 19
    edited August 2009

    My pre TCH muga scan was 72%, after 3 months it was in the 50's, 3 months later up to 60%.  I finished chemo in April but was to finish Herceptin til the end of the year.  I went for my MUGA scan yesterday & my results today show I'm at 46% and they cancelled all remaining Herceptin treatments & scheduled an echocardiogram for tomorrow.  Heart damage was my fear from the beginning even though my scans were normal so now I'm really scared.  My onc says normal is 50%.  I hope I don't have to go back on Herceptin.  I've been on it for 8 months & in other countries the protocol is 16 weeks.  I keep thinking if we would have stopped 3 months ago, my heart would still be normal.  Wish me luck. Gail

  • bluedasher
    bluedasher Member Posts: 1,203
    edited August 2009

    Gail, I hope that it improves for you. They say that the LVEF drop from Herceptin usually recovers when Herceptin is stopped and I've seen other posts here where that's happened. Some restarted it after their LVEF improved and did fine.

    They can't make you restart it if you don't want to. It is your decision. My onc told me at the beginning that 18 weeks was standard in Europe and implied that if my LVEF went down after I'd had it at least that long, she wouldn't suggest restarting it. 

    But you may feel differently after your LVEF comes back up. 

    I also notice that your readings have varied a lot. Mine have stayed almost the same all through. Perhaps you are a person where this bounces around more or perhaps the site doing the testing has more variation. I understand there is some subjectivity in producing the results. Maybe the echocardiogram will show that it isn't that bad.

  • christine1000
    christine1000 Member Posts: 27
    edited August 2009

    Hi there - I got a MUGA because I had ACT 9 years ago - now I am starting CTH so they want to baseline me and give me a couple of checks during my treatment.  ( I actually just had the MUGA today - did anyone else's mouth feel funny afterwards?)

  • bluedasher
    bluedasher Member Posts: 1,203
    edited August 2009

    Back from my MUGA today. It should be my last! I got a different tech today and he did the tagging in vitro. In the past I've always had in vivo.

    For my baseline MUGA at the start, they did the imaging 3 times - once from above my chest, once from my left side and once at a 45 degree angle in between the other two. I guess that gives the most accurate results and checks if there is anything atypical that isn't visible at a particular angle. For the follow-ups, they just do the 45 degree angle scan, then go do a quick calculation. The tech last time told me that if it looks close to 50% or below then they will take another angle. Today, the tech said that the quick check said it is between 60 and 65. My baseline was 65 and my lowest so far has been 61 so it sounds like it hasn't changed much in 10 months.

  • cyalata
    cyalata Member Posts: 19
    edited August 2009

    Got the results from my echo & my heart is healthy.  The echo shows 60-65% - I don't understand the difference in the MUGA.  My onc said she would have no problem continuing my Herceptin today but protocol shows if there is a certain percentage drop that it should be held 2 times. I asked her about the protocol in Europe & she said there is no documentation that she knows of that says under one year of treatment is acceptable.  I didn't argue since I google most of my info online.  But I'm happy my heart is healthy.

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