HELP!! Scared! MUGA dropped

Her2Sue · 08-08-2007, 10:47 AM

Please someone tell me I am gonna survive this! Everything is good as far as my cancer being caught! Clear margins, clear nodes! I am having to do Herceptin for the rest of the year. Well I went for treatment today and Onc said my MUGA dropped to 55. NOW I am SCARED!! How do you get past this fear? I am scared I am gonna fall over dead! What does it mean when our MUGA drops? Is the damage repairable? Somebody please advice!!
Thank you
Susan

naturaleigh · 08-08-2007, 11:43 AM

Nothing to fear. Your diagnosis is much like mine with no node involment and clear margins. My first Mugga was 82, then my second dropped to 50. Scared me to death too. If it drops below 50, they will stop the Herceptin for awhile. They consider anything 50 and above OK. I am like you, it might be ok with them but it was not OK with me!! I considered that too much of a drop so I decided I would have to raise my Mugga myself, I started walking again. It seemed to have helped, my 3rd Mugga was 58%.

One thing you might want to do is to walk everyday, that will help keep your heart pumping and in good shape. It will make you feel better too. My walking helps me to unwind.

I completed my year+ of Herceptin this past May. Once you are off the Herceptin, your heart bounces back.

Let me know if you have any more questions. Since you are on Herceptin, you have completed the hard part!! Congratulations!!

Anita

Ruth · 08-08-2007, 11:49 AM

Susan:

This happened to me also and I had an ECHO done to double check this result from the MUGA. My ECHO showed my heart was fine and I continued the Herceptin for my year. I don't know how common this is but when I was given the ECHO the Dr. stated that sometimes the MUGA is not 100% reliable...what is in life anyway?!

I hope this is the case with you....please don't be scared.

Ruth

Barbara2 · 08-08-2007, 03:00 PM

When taking herceptin, I started taking Co-Q10 which is very good for the heart and has good synergy with herceptin for cardio functions. I think it made the difference for me. During my year of herceptin, I was able to keep the ECHO and MUGA scores above 50, so I could continue with the herceptin.

I've been off herceptin for a year, but have continued the Co-Q10. I think quite a few people take it that are on this message board. Why don't you do a search here, and I think you will find others....

Joe · 08-08-2007, 04:12 PM

The timing of the MUGA is very important. Try to schedule it just before you are due to receive your Herceptin.

Regards
Joe

Her2Sue · 08-08-2007, 08:15 PM

Helps to know your not alone in this journey! My onc has my next MUGA scheduled for Oct (2 months instead of 3 this time) BUT I will still be doing my Herceptin every 3 weeks until then. UGHHH!
Joe my Onc has always sceduled my MUGA the week before one of my herceptins. HAHA TOO bad I can't get a muga daily for a bit!! LOL that would help with the sanity!!
Love you all
Susan

Angela · 08-08-2007, 11:05 PM

My muga dropped to 50.7 but I am still receiving Herceptin. I have a cardiologist who has put me on Coreg (a beta blocker for the heart). He said that a study was done showing that cancer patients taking Coreg and Herceptin did not have much of a drop in their Mugas. I was not put on Coreg until after my muga dropped because I didn't go to the cardiologist until I had the decrease in the muga.

Shad · 08-10-2007, 05:21 AM

I have had a similar journey with concern about dropping MUGA scores during chemo and Herceptin therapy (58%, 51%, 51% ---- 62% after Herceptin completed). I am under the impression that as long as we stay above the lower limits of normal (I think above 45 or 50%) that our physicians are likely going to continue chemo and/or Herceptin therapy. We, who are under the pressures of this whole ordeal, tend to cling and even obscess over the fluctuations in the MUGA scores, concerned that the potential cardiotoxicity of chemo (Adria) and Herceptin are going to make our journey even harder. I wonder if, as long as our scores are in the normal range, we should "relax" ha ha and concentrate on positive thinking of healing.
I, too, as a result of postings from this group (thank you) started taking Co-Q and fish oil, and found exercise to be very helpful in my well being.
Shad

kat in the delta · 08-11-2007, 02:04 PM

What exactly is the MUGA ? I had a heart test done where they injected dye and then ran a machine over me for about 20 min...it was scanning my heart... Is that it ?? I told my Onc. that I read where Her2+ patients getting Herceptin were having a MUGA done every 3 mos., but he only ordered 1 before and I think I only had 1 or 2 of these HEART scans.... during 1 yr + 2 months of herceptin....

I recently asked the Sec. for a copy of some of my tests..
and I just saw my LAST heart score was in the 40's . I did not know this at that time -about one yr..ago. the Onc. kept giving me my final 3 or so... herceptins full strength...altho' I asked him to scan me because at least I knew he had not ordered a heart scan for a while but was still giving me the Herceptin.
When I would ask him.... He'd refused, and said I did NOT need another scan.and he told me my last scan was Good...He added that I would be fine and "stop worrying"..which he gives as an answer to all my ?'s
Please someone... Explain the Muga and the Scores...
My blood pressure is always high now even with BP meds....
I feel out of breath if I do too much, my circulation is poor..I have brown patches on my swollen ankles eventho I am very thin.and now on 2 diurectics, and I have a knawing ache all over..but Onc says he cannot give me even 1 pain pill as Tumor Markers show..no cancer ---......almost forgot to say...
my memory or chemo-brain which hasn't improved .....may be really--my poor circulation.!!!
I feel like I am ADD/ALHEIMERS....
ANYONE WILLING TO COMMENT....????
My 4 men think I am NUTS.and LOOK at me with disgusting looks....... which makes my whole situation worse.--.they will not lift a finger.
My house is in chaos. from them movin from college and apts......
I think my mind and body are in Shut-down mode ... takes me too long..to do things and get out of the house... I have almost given up..
kat in the delta

janet11 · 08-13-2007, 10:24 AM

Kat, have you gone to your primary care doctor (not your onc)? When i started having blood pressure problems, my onc sent me to my PCP (who would then have referred me to a cardiologist if I needed it). But we got it resolved on this level, then he sent a note to my onc that I could continue with the chemo.

Good luck,
Janet

janet11 · 09-05-2007, 02:54 PM

Hmm... went to my primary care dr today and she put me on CoReg. Wish I had found out about this earlier -- I might have been able to continue with the Herception. Oh well, if I don't need Herceptin ever again, then I had enough. And if I DO need it again (for a recurrance), hopefully the CoReg will keep my heart going well enough to be able to tolerate it.

BonnieR · 09-05-2007, 03:10 PM

Okay everybody, I need some clarification here. I had a echocardiogram several months ago to check on a mytral valve issue. It was okay. Then the cancer diagnosis happened. Now I have had 3 doses of Herceptin. I asked yesterday when they will check my cardiac function again and I was told "after 6 months on Herceptin. And then after a year on it" (Which will be the END of my course!). Does that seem right to you? I seem to be doing alot of double checking and finding things that need attention....
and how is a MUGA different from an echocardiogram?

janet11 · 09-05-2007, 03:19 PM

They scheduled mine every 3 months. (or that was the plan anyway)

dhealey · 09-05-2007, 03:26 PM

Bonnie, My onc has me get an echo every three months. The first one was when I finished 2 months of adramyacin which also affects the heart. Then I started herceptin and have continued with the echos every three months. My onc said if the ejection fraction got below 50 we would stop the herceptin for awhile. So far I have stayed in the mid 60's actually improved last time since I started walking more and taking fish oil. I am having another echo this Friday along with some other scans. Will let you know how it turns out.

BonnieR · 09-05-2007, 03:28 PM

Kat, I don't understand why you can't have medication if you are experiencing pain. Just cause there is "no cancer" doesn't mean we don't have pain from the treatments themselves. Or other causes. As someone suggested, maybe it is time to see your GP....

kcherub · 09-05-2007, 04:33 PM

Joe,

I have a question to your post...I am not sure about the difference between and ECHO and a MUGA, but I have Herceptin this Friday and an ECHO on Monday. Will my "score" be off, and should I try to have it tomorrow if at all possible? I am overdue for it, so I can't wait another three weeks...

Thanks!

Gerri · 09-05-2007, 07:56 PM

Bonnie,

I received Herceptin every three weeks and had an echo every three months, always done a week prior to infusion. My onc told me at my last checkup in June that the new guidelines recommend continuing with the echos until a year out of Herceptin. I see my onc again on Friday and had my echo done last week.

Joanne S · 09-05-2007, 08:26 PM

I too was having Mugas every three months. Three months ago my muga fell from 56 to 46 so my onc sent me to a cardiologist and put my Herceptin on hold. I had an echocardiogram as the cardiologist said it was more accurate than the mugas. The echo showed EF of 50 so I was able to continue with the Herceptin two weeks later. Now that it's three months since my last echo, I had another echo today and will get the results next week to find out if I can have my next scheduled Herceptin. Every three months is the normal follow-up with Herceptin, you may want to discuss this further with your oncologist, primary doctor or get a second opinion from another oncologist. Best to you.

Catherine · 09-05-2007, 08:47 PM

Kat,

Your oncologist sounds like an old grump. I think he should be more open to your questions. I try to ask my questions in a very business like approach. I read about someone today who writes their questions down in blue. Then goes to the doctor and writes the answers in red. Well my questions are not color coded, but all my research and questions are in sequential order and dated. I can always refer to the answer I go, because I do forget. I would recommend seeing your primary and asking for another oncologist, you need some support.

I get Herceptin every 3 weeks and a muga every 3 months.

Put yourself first and let those men make their own dinner and wash their own clothes,

All the best,Catherine

Alice · 09-06-2007, 09:00 AM

Kat,
Sounds to me like you need an onc that cares. I have never had a mugua I only had echos every 3 months. One difference is the muguas use radioactive die. I have kidney issues with the dies so my Dr. tries to keep clear of those when possible. She also said that herceptin can stay in the bloodstream in measurable amounts for up to a year after the last infusion.