HELP!! Scared! MUGA dropped

[Her2Sue]

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]

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]

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]

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]

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

Regards
Joe

[Her2Sue]

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]

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.

[kat in the delta]

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]

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

[kcherub]

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]

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.

[dhealey]

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.

[Joanne S]

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]

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]

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.

[shelli]

I initially started with a muga of 65 prior to Herceptin. It dropped to 41 at the lowest point. I continued with Herceptin the entire time. I took herceptin for 52 weeks continuously. Now that I have finished herceptin in Feb. my last scan is now at 49%. Both my onco & cardio don't seem to be concerned. I have also been on Toprol 25mg. daily for several years due to an arrhthmia called bigeminy whereby every other heartbeat is abnormal. I have bad fatigue and sometimes some shortness of breath but I'm not sure if it can be directly correlated to the drop in EF or just from all the treatment I've had.
I wasn't too concerned because I was more fearful of the cancer than the potential heart damage which often recovers when the treatment is completed. The doctors are not sure now if my EF will improve more over time. They seemed to believe that 50 and over is normal & that mine was slightly below and not a big deal or cause for any concern. I was also told that the Muga is more accurate than an Echo and they show slightly different things. Muga shows more functioning of the heart than Echo. Also had a CT Angiogram of heart which was fine.

[Andrea Barnett Budin]

Kat, your post blew me away. Please read this and then reread it to take it all in...

This is to all who expressed concern re Herceptin and ECHO and EF etc...

I had a MUGA (w/the radioactive dye) to begin w/ in '95 at initial dx, before Adria. Since I've been on H (beginning in '98) I got ECHOs ev e mnths. Standard practice. At a certain point the onc moved my ECHOS to ev 6 mnths. As of '06, after all these yrs, they moved me to annually. I wouldn't want to be using radioactive dye any more than I have to (ie contrast w/CT scans).

I began w/EF of 65 and am now 50. My cardiol says slightly unreliable, could be 5% more, meaning 55%. He's not worried from his pt of view. I have high bld press, from before bc, and am on Coreg twice a day + Vasotec + hydrochlorthiazide (for swollen ankles, which my mother and great aunts had just like that. No bc or chemo.) Just genetic. My cardiol checks me ev 6 mnths and sometimes has to tweak my meds to keep my BP normal. The chemo nurses take my bld press ev 3 wks and I take specific note. If I am creeping up there, they retake it before I leave, to see if there is a diff. If I am a bit high, they tell me to watch it, which I take as a loving warning and I follow up w/my cardiol.

I do get out of breath from walking sometimes. I have had a small peri cardial effussion since Taxotere that has remained stable and is not a concern to my cardiol or my oncs. (I had a pleural effusion, fluid around my lungs, when on Taxotere, but it eventually dissipated.) They don't believe the fluid around my heart will ever go away, but keep an eye on it to be sure it stays stable, small, or moderate.

My NY nutritional oncologist who is a supplement guru has put me on PERFUSIA, which is Argenine. The bottle says take 6 a day (3 + 3). Guru says take 1, and don't worry about EF. When I called him with the last ECHO a few wks ago, concerned about my 50, he told me I could double my Perfusia. so I am doing that.

I take co-enzyme Q10 - 150 X2 a day. I take Omega 3, and a bunch of other stuff I've listed in a 6/30 thread TO "SUPPLEMENT" OR WAIT, for those interested. I tried to give dosages and the reason for taking each. I will be happy to answer any addl questions, of course.

I get a copy of every single report for ev single test I have and save them in a file. I compare #s when I get home and question each slightest change. That's how I found my liver mets, w/"slightly elevated liver enzymes -- I wouldn't worry about it" 3 X in a row (over 6 mnths of comprehensive bld tests ev 3 mnths). I asked for a sono. Which led to a CT scan, which led to a liver biopsy...

We must be our own proactive case worker! I question everything. I keep a list of my questions, cause I get caught up in the moment, stuck on something the doc says, or that my brain wanders to, and my thought processes just freeze. I am consistently told that I am not being a bother, but that I am smart to ask questions. I want to be clear on every little point. I reiterate what written orders are, for H, for CT scans, etc. Mistakes are consistenly made. They are so busy, so overworked. I am focused on 1 patient. ME.

Whether you have cancer or not -- IF YOU ARE IN PAIN, YOUR DOC SHOULD ADDRESS THAT! If he/she does not -- you need another doc! I can't state that strongly enough! What you say, Kat, makes no sense. It is a totally inappropriate response to a person in need!

Being on diuretics you must watch your potassium #s. Kat in the Delta -- have you checked to see if yours are in the normal range????? I supplement w/potassium and am still low. So I eat a banana every single day and I have a glass of OJ every single day. You could choose to eat an orange instead. Both are high in potassium.

I take NADH (see thread referred to above -- or ask me) which improves energy and MENTAL ACUITY. It's amazing! The stuff really works. As do my immune boosters and other supplements. I am still here -- 12 yrs after initial dx and I believe my nut onc guru has contributed mightily to that!

When I am living in chaos (ie when I broke my ankle, had surgery and was in a cast, told not to put any weight on that foot for 3 mnths and to keep my ankle above my heart for that pd of time) is was horrid. I hear you! I was in physical pain. And psychic hell. I was aware of the mess, which my husband didn't notice and who was doing everything because I could do nothing. I went into a shut down mode. I hid. I had to. To survive. I looked the other way. Kat -- your 4 men should not be judging you, but supporting you and contributing as best they can to the house and your well-being. You deserve that! You've been through the wars, and you need your men to be respectful of that!

I know well the difference between getting out and doing what you have to and forcing yourself to do the littlest thing, like getting dressed, and then to lie down. If that's how you feel -- listen to your body. Be good to yourself. Be patient with yourself. Let your body recuperate, heal and be well. Be your own best friend. Do not take your fatigue as a sign of defeat. Your body is responding the trial and assault it's just undergone and is asking for your cooperation. Not unreasonable. DO NOT GIVE UP. DO NOT GIVE IN.

See a doc about some anti-depressant med. I was on Zoloft and it made me ME again. Now I'm on Effexor. It takes the edge off and allows the true you to blossom. We all need a little help a times. Nothing to be ashamed of.

Please know you can air your thoughts here any time and we all are willing to listen and can relate to your experience. We all want to help one another, support one another and lift one another up. We're here for you Kat. Sending you loving energy...

Andi

[Joanne S]

Muga vs. Echocardiogram

Testing your heart before and during Herceptin treatment

Before starting Herceptin therapy, you should have an echocardiogram or a MUGA scan to check how well your heart is functioning.

• An echocardiogram uses sound waves to take detailed pictures of the heart as it pumps blood. For this quick test, you lie still for a few minutes while a device that gives off sound waves is briefly placed on your ribs, over your heart. There is no radiation exposure with this test.
• A MUGA (multigated blood-pool imaging) scan takes about an hour. In this test, a tiny amount of radioactive material is injected into a vein in your arm. This material temporarily hooks onto your red blood cells. You lie still while a special camera that can detect the radioactive material takes pictures of the blood flow through your heart as it beats.

When you first start taking Herceptin, your doctor might want you to have MUGA scans or echocardiograms every few months to detect any sign of heart failure. But after you've been on Herceptin for a while, you may need a heart-monitoring test only every 6 months or so. This is because heart failure is less likely to occur the longer you take Herceptin.
If you're taking Herceptin, be sure to notify your doctor immediately, or go to the nearest emergency room, if you develop any symptoms of heart failure. These symptoms include shortness of breath, difficulty breathing, a fast or irregular heartbeat, increased cough, and swelling of the feet or lower legs.

This is a great site:
http://www.breastcancer.org/treatmen...de_effects.jsp