My Muga dropped!

Hey, I just came across your post and wanted to say...it will be OK. I had a MUGA every 3-4 months to check out my heart....it dropped some the first few times ;started out at 74% got down to 58%; ended up after all was said and done at 64%...go figure? I work with some cardiologists and asked them if it was OK that my EF was down and they said yes....anything above 40 or so is OK. Also the reading of your MUGA is very subjective...one MD might call it 64% and another might say its 61%. What I am trying to say, you are doing GREAT, hang in there!!! Also my oncologist said if mine had dropped any lower he would have stopped my treatment and given my heart a rest and the resumed. You can get some of your cardiac function back. Also your EF (ejection fraction..which is what they are measuring) depends on your hydration status, Heart rate etc. I recieved Herceptin weekly for a total of 53 weeks. I finished in NOV '06 and have no cardiac issues. Take care, best wishes Julie

Man, I wish I had read this earlier! I had my 3 mo. check up with my onc yesterday, who just now noticed that my MUGA in March dropped (to I think it said 58%) and immediately sent me for another one. He said he might have to stop my treatments- I was supposed to go every 3 weeks until Aug. 6. I even made it a point to NOT drink too much water so I wouldn't have to pee before it was finished-GEESH! I REALLY want to finish this completely.

Gad. My MUGA went from 63% (at start) to 60% (at end of TCH chemo), then 53% in march and 49% May 1. When it hit 49, I was told 'no herceptin that day'.

Today I met with my onc and I'm having another MUGA tomorrow (3 weeks after the last one). She feels that since I was so borderline and had NO symptoms of problems, that mine would probably be above the magic 50% mark and, if so, I'm scheduled to continue with my Herceptin on Friday.

The 60 to 53% drop in 3 months worried her a bit, but not enough to stop my Herceptin. What it DID do was have her do the next MUGA in 1.5 months instead of waiting the normal 3 month interval.

Oh well, it's good they're watching this.

Janet

No, they didn't make me rest. In fact, I went out kayaking for a day while on vacation. Had a great time. And no, no advice. Will find out the MUGA results by Friday and if ok, will resume Herceptin on Friday.

Now if only I felt better (*sigh*). (this is a general plea for sympathy (*laugh*). I apparently 'encountered' some poison ivy on Sunday, and my arms are a weeping mess today. I've had worse, but it's still enough that I had to ask for a towel under my arm during the MUGA scan so that I didn't "ooze" onto the arm rest. Yuckers. I HATE itching! I know it's not life-threatening, but it's still ... yuckers!!!
(*one eye poking up looking for sympathetic gazes*) (*smile*).

Janet4

I too understand your concern, I went for my 9th Herceptin today and was told my Mugga had dropped from 56 (nine weeks ago) to 50 on Tuesday. Now I have been told I will need another Mugga in the next 3 weeks. My Mugga had a lot of irregular beats and this could be responsible for a underestimation of 50. I have been experiencing a racing heart sometimes since Dec. Hope it is not any damage from the Adriamycin, radiation on left side or Herceptin. I wore an heart event monitor and am awaiting the final results from this / was told I would probably need to see a Cardiologist. I am hoping and praying that this will all blow over and is only due to anxiety or whatever and not another thing to have to deal with. Except for fatigue and aching joints (arimidex SE) I am doing very well.

Janet,

I am just so happy that your onc is doing Mugas. I am just so angry right now because my onc did not do them knowing that I was doing adriamycin which can cause heart damage plus had rads to the left breast. I am 5.5 years out from my dx with bc. I just got out of the hospital with congestive heart failure from heart damage the cardiologist says has to be from the adriamycin and rads. He could not believe the onc did not do muga scans. I don't see my onc for another year but I'm definitely going to talk to him about it.

I do know that the heart damage from chemo can show up much later.

Just as an fyi, the symptoms of congestive heart failure are shortness of breath. If you are being awaken in the middle of night with shortness of breath. That is a classic symptom. If you have swelling as well that is a symptom. I had shortness of breath for 3 weeks and was waking up every night for at least 2 weeks. While I was sitting in the ER, I noticed my ankles started swelling which got the doctor in to see me in about 2 minutes. But that was the first time I experienced any swelling.

Debbie

Gad Laura, what did you start with if he wants to stop at 54%?

Mine went down from 70 to the high 50's after Adriamycin, then held steady in the mid 60's through 15 herceptin treatments, the last measurement was 76. So clearly it can go down and then recover. I'm not sure how precise the readings are but I'm sure the must be at least several percent plus or minus in accuracy.

However Debbie's experience is a lesson for all of us. We should know the signs of heart problems.

Hi gals! I am glad to find this thread ... Janet, our diagnoses were pretty much the same (we've commented on it before :-) ... and heart damage is very much on my mind. I had DD A/C (and we know that Adriamycin can cause heart damage, especially when it is administered dose dense). You dodged that bullet, and I wish that my onc gave it the consideration that your onc did by giving you Taxotere and Carboplatin instead. Throughout my BC journey, the stuff that's supposed to be "rare" events have been happening to me, and I'm just a little spooked about the heart damage possibility, especially as we learned from Debbie's experience that the damage from chemo can show up so many years later.

Yes, it's rare to get a pneumo thorax during port placement, but my surgeon pierced my lung accidentally and there I was. Scary.
Yes, lots of patients get MammoSite radiation treatment without developing a big whopping seroma, but mine did. Needed to be drained 3 times and eventually subsided 8 months after surgery.
Seven weeks ago a blood clot formed in subclavian vein, around the catheter of my port. Needed ER care, and has been on Warfarin (Coumadin) since, for blood thinning.

Six weeks ago, immediately after Herceptin infusion no. 7, I developed a searing pain across my ribs, under breast and left arm (left breast had the lumpectomy and Mammosite radiation). Was still at onc's office, so the nurse suggested he sees me. Standing up, he pokes a finger in my ribs and when i go Ouch! that hurts! he says nonchalantly "that's good, it's not your heart or your lungs, but JUST a muscle spasm!"

Three weeks later, at infusion no. 8, I made nurse aware that it still hurts very much and she said oh, these muscle spasms can last very long.

It even hurts when i inhale deeply. Saw my regular doctor, who is an internal med specialist, and he thinks it's a ligament between ribs.

Mammogram of left breast last week says all is fine.

My, I am wordy today! But I have been worrying, and at last I can share my rationale with Herceptin sisters as to why I decided to quit halfway. My heart ejection fraction has steadily been drifting down from 70, it was 54 3 weeks ago after 3-monthly echo. So it suddenly dawned on me that I am convinced that the eight 3-weekly Herceptin treatments that I've had is ENOUGH FOR ME. My tumor was stage 1, and sentinel node plus one more were clear.
I called onc nurse to schedule appntmnt with onc at my #9 infusion, and told her my thoughts. She said, talk to doc, here he is. I explained myself, and asked him to confirm whether any other studies had been done re. number of treatments necessary for early stage bc. He said there has been a study showing that 6 treatments are beneficial. He then asked "how many have you had?" I said 8, and he said "okay, you can stop, and we'll cancel your no. 9 infusion for this Friday." Wow. Just like that. I was a little shocked, as i had emotionally prepared me for having the ninth one, and seeing it as a mile-post "halfway". Onc wants to see me again in 3 months.

So now i have an appointment with the surgeon, who will remove my port as an outpatient procedure, and then i can probably quit the Coumadin, and then ... perhaps the "spasm" thing will slowly fade away. I hope. And the joint pain and exacerbated arthritis (I'm really only 63, but the past year I went from feeling like a young 62, to very old 63 :-)

Lastly, I sort of feel (my own emotional feeling) that by letting the port go I am manifesting my belief that I will not need it again.

Gee! What a load off my chest! I don't usually "hog the airwaves" but today i just had to spill it all out.

Love and Light to you all,
Delina

Hi Delina,

Congrats on finishing chemo. I'm 51 now and was 45 when I was dx'd with stage 2, Grade 3, highly HER+++ bc. I only did the 4 rounds of AC and then 35 rads. At that time they were not doing DD and Herceptin was only offered to Stage 4. I'd say you have definitely been thru enough for Stage 1 bc!

Over the years there have been a number of threads about arthritis and chemo! I can remember suffering with arthritis for a year after chemo. My onc told me that if you were going to get arthritis later in life the chemo could bring it on. He also said the initial outbreak was the worse. It was tough but after about a year it seemed to go away and I only have flare ups on occassion.

Good Luck! I hope you bounce back very quickly from the chemo!

Debbie

Oh yes, I totally agree with you that when I'm through with the Herceptin, the port GOES. That's going to be a major life change for me to feel "I'm a cancer survivor" instead of "I'm a cancer patient".

There's a great description of this from the surgeon's point of view at: http://scienceblogs.com/insolence/2007/03/a_happy_little_case.php#more

where he says...
"Indeed, removing a port is so easy that it's equally easy to forget what this means to the patient. It means an end to the chemotherapy. It means that the most intense, painful stage of treatment is over. It means reversal of at least one bodily alteration. it promises the hope of a return of what was taken away by the cancer. To us surgeons, it's a simple procedure, even a nuisance sometimes when things are busy and we're being asked to do a dozen procedures and being pulled in a million different directions."

Great stuff.

Janet

Delina, did you get your MRI?

I just had another MUGA. I've been off Herceptin for 2 months now and my LVEF has gone from 40% to 44%. And whereas before it was only affecting the left ventrical, now they say "globally reduced contractibility" (including the right side too). Lovely.

But, the good thing: I have NO symptoms of problems and probably won't, especially when the MUGA results FINALLY start reversing! And, I'm permanently OFF Herceptin, which means... I can schedule getting my port out.

I know... it's not good to know I can't tolerate Herceptin, but I'm not looking at "what might be". I'm just looking at today and for now a decision has been made to stop it and consider treatment OVER.

Am looking forward to getting my port out!

Janet