Stopped Herceptin due to low muga scan

I received a call today telling me my EF had dropped 10 pts and that I could not have any more Herceptin until after I saw the cardiologist.  We'll see.

I'll take the risk of heart problems over the bc risk any day.

Bridget, Flash - trust me you do not want heart problems and you don't want to develop an enlarged heart and then congestive heart failure.  It is actually worse than when I was told I had highly aggressive HER+++ bc.  I am only 52 and developed heart problems a year ago from the chemo I received 7 years ago.  I am not overweight, do not have high blood pressure, my cholesterol is textbook perfect, have no blockages, don't drink and don't smoke.  My heart damage is from the adriamycin which is also toxic to the heart.  My EF got down to 18% and now after a year on heart meds it is back up to 45-50%.  Right now it looks like the meds are working to keep my EF up but I will be on them the rest of my life.  The cardiologist said meds often do not work and if that is the case your only other option is heart transplant.  I never thought anything would upset me as much as when they told me I had to do chemo.  But when the doctors talked to me about going to a talk to a heart transplant team at Emory, I think I went into shock.

Bridget, I had a time being dx'd with heart problems because I was only 51 and did not look like someone with heart problems.  I went to 6 doctors in 4 weeks and the ER twice.  It started out as shortness of breath that just got progressively worse in 4 weeks.  The last 2 weeks I was waking up at night unable to breath (which is a sign of heart problems) and I was telling doctors this but they ignored it.  It got to the point I couldn't walk 4 feet without stopping (they ignored this too).  It wasn't until I was sitting in the ER waiting to see a doctor yet again, that I noticed my ankles were swelling.  That was the first time I had that symptom.  When the nurse saw that, the ER doc came running in and told me I was having heart problems and people started hooking me up to all kind of stuff.   At that point, my EF was 18%, my heart was under so much stress that it was beating erratically and I was just this side of a major heart attack.  The ER doc told me that if I had not come in when I did, that I would have come in later on a stretcher...and I don't think he meant alive!  When they did the echo, you could see the pockets of fluid on my heart and yet my ankles only started swelling after I got to the ER.  The nurses and doctors kept asking me if I was having chest pains but I never did have any pains. 

I knew when I did the chemo that it could damage your heart.  I just never realized the type of damage it did or what the symptoms were.  It's one of those really serious side effects that only occurs in a small majority of us.  And I had an onc who didn't do mugas either.  I keep thinking that had they been done during chemo and then on a yearly basis that maybe we could have caught my heart problems before it got as bad as it did.

I know you don't want to stop herceptin but you really need to work with your onc and a cardiologist to ensure you don't have to deal with heart damage.

 Debbie

My wife EF dropped to the 25-27% range on TAC/avastin and then Gemzar/Carpo/avastin.  Onc put most blame on avastin.  There has been a study done by M D Anderson about The high precentage of Left Ventircle damage causing the low EF by chemo;  They now recommend that the two drugs Bethwva uses the Ace inhibitor and Beta blocker be given to patients prophylacticly before and during chemo  No matter how strong the heart is at start..  Trials show this takes care of the problem as a rule.  

There is normal variation in MUGA readings just like in your temperature. I was concerned because my MUGA went from 76 to 71 to 64 to 61. The onc was not worried but ordered another one just 3 weeks later to allay my fears. Sure enough, the next one was 79.

The MUGA scan can yield a different score at different times of the day, from day to day, and from technologist to technologist. In the absence of other symptoms, what appears to be a "declining" score may be simple variation due to these causes.

I'm not going to worry about MUGAs any more. Both the onc and the MUGA tech have told me the same thing over and over. Anything in the 50s and 60s is normal. 

They do have a chart to follow which details steps to follow depending on how great a variation there is over what period.

I was reading an article which noted that the kind of heart damage that Herceptin does is different than that of adriamycin. They are finding that the Herceptin heart problems usually are reversable after one is off Herceptin.

Hi ladies,

Question for you all. I have had 6 treatments of herceptin so far. While I was receiving it with taxol, everything was fine. My last two doses have been by themselves and my numbers have dropped. I can't recall to what but I'm still in the range to receive it. I have another round in two weeks and then my third muga to make sure I can continue. How far into treatment did your numbers begin to drop? My onc has informed me that many times your numbers will drop dramatically but then stabilize.

Roxi 

LC4949 --

Not getting Herceptin, but just finished AC and now on Taxol. I feel periods of slight to moderate breathlessness (2 so far, 1 was bad) -- so they are dong a MUGA on me after I've been off AC for about a month and a half.

Good to know it can go up over time! Thanks for sharing. Mine was 60 to start with... 

Springtime

Hi Bridget,

Thanks for the good thoughts! I hope my MUGA comes back okay too or that I recover from this. This past Sunday I had some breathlessness again (time #2) but it was not as bad as time #1 and was gone by the next day. I was okay mostly in the house, but tried a walk outside and could not do it, was breathing too hard (and that is NOT THE NORMAL ME!). The first time was really bad. In bed for 2 days.... (I did not realize what it was, it was my 3rd AC and I thought, well the "cumulative impact" has finally hit me..)

As for Taxol, I've just had one treatment so far, and had some body aches, but not too bad. (I don't get body aches from Neulasta shot) -- so I may not be a "body ache" type person. I have body aches from exercise and Yoga, anyway, nothing too bad from Taxol. I hae not had neuropathy yet, but only 1TX of taxol so far. We'll see. 

Hang in there Bridget! HUGS!  -  Springtime

HI All,

My MUGA scan EF before chemo was very high in high 70s or low 80s. I had A/C neoadjuvant chemo then surgery then Taxol and Herceptin. After Taxol and radiation ended, while still taking Herceptin, my legs and ankles swelled. Next MUGA scan showed 46EF.  After stopping treatment for 6 wks, my next MUGA scan had not changed. My oncologist says that I may never be able to take any chemo again.  My oncologist now says that I should just go back to life. Meanwhile, I have congestive heart failure - shortness of breath, fatigue, sleep disorders, etc. I also have peripheral neuropathy from the Taxol that has not abated since Taxol treatment stopped in March. I stopped Herceptin treatment the first week of June. Anyone know of any stats on patients that have only had 4 months of Herceptin?

Hi All,

Got the results of my second MUGA which was about 5 weeks after my last AC (I don't get Herceptin).

Good news, I actually went up from 60 to 63! Yay! So even though I had a few scary bouts of breathlessness, perhaps it has "resolved"? I am working out with a PT and walking.

I am hoping the good heart results hold forever. I know heart issues can hit years down the road. But for now, I guess we celebrate the victories we get!

Springtime

Thanks Bluedasher for the info! I am relieved to hear that 16 wks could actually be enough. I am still waiting for my heart to recover. My docs are still saying everything is fine now. Funny, I still can't work. I still can't even take out the garbage without having a racing heart and asthma issues.  Maybe I should just calm down and give it a few months. I just don't think that I can live in my house without cleaning it any longer. It really should be declared a disaster area. Call FEMA. LOL