muga scan question?

[Laurie S]

I had my first muga before I started AC in April. It was 54%. I did 4 dose dense ac, followed by 12 taxol/herceptins that I finished yesterday. YEA! I am scheduled for another Muga in 2 weeks , so I can continue on at least a year of Herceptin. My questions are:

1)For those of you that did have dropping Muga %, did you have any symptoms?


2)Did you go to a cardiologist, if your % dropped so low that you had to stop Herceptin?


3)what dose of CQ10 are you taking?

4)For those of you that went to a cardiologist, is there anything he said that can help improve the %, such as exercise, etc.?


5)How long did it take for the % to come back up ? If it did at all.


Thanks in advance!

Laurie

[Bonnie T]

hi
My Muga went from 52% to 37% after just 3 treatments with herceptin. I had chemo last year, so now I am just on herceptin and tomaxifin. The only sympton I had was that I was tired , but who isn't :-) !!
They stopped the herceptin and I saw a Cardiologist. He did an ECHO so he could look at the whole heart, luckily no heart damgage, and my heart function has already gone up.
He put me on Coreg 12mg ( he wants to start out low) and also Lisinopril.
I have a MUGA in 2 months and I see the cardiologist and my Oncologist, hopefully it will have gone up and I can try again.
I was taking herceptin every 3 weeks.
The only thing the cardiologist said was to try walking ( for excersise).
WHAT is CQ10 ????????????????????????
Keep in touch
Bonnie T

[Rupali]

My LVEF went down from 54% to 45% after 16 treatments of Herceptin. THese are 16 weekly treatments in 3 months.
I had dose dense AC and then 4 rounds of Taxol.
I was diagnosed with Stage 3 and had mastectomy.
Right now I am very concerned as this will mean that I will have a break in my Herceptin treatment.
At 45% they want to wait for 1 month and redo MUGA to see if the heart has come back.

[Rupali]

Hi Bonnie,
How much time did it take for your LVEF to go up again. I will also consider now seeing a cardiologist.
I have been doing Yoga regularly and have been on 200mg COQ 10 for last 8 months, still Herceptin impacted my LVEF.

Rupali

[*_BonnieT_*]

Rupali
My % went up after about 3 weeks , on the ECHO it was 45%, my cardiologist explained that the % is usually higher on an ECHO , so with a MUGA it was probably around 42%.
I would definitely see a cardiologist , that way you can be monitered closely , I am hoping to go back on Herceptin in October. My Oncologist won't let me unless my MUGA is at least 50%.
What is coq10 ???
thanks
Bonnie T

[*_Linda in Calif._*]

CO-Q-10 is a suppliment you can take that is supposed to help with keeping your heart healthy. If you want info on it I would suggest doing a "search" on Yahoo or Google. I did not take CO-Q-10 the first time I took herceptin (After A/C) because I was in a clinical trial and they wanted to keep such things to a minimum to get accurate study results. After 4 months my heart function dropped from 80% to 63%. I had no symptoms of decreased heart function and it was a shock to everyone. My Onc discontinued the herceptin and did a MUGA 4 weeks later which didn't show much improvement. He did another one a month after that where my heart was back to the high 70's. Unfortunatley, I had been off herceptin too long to continue in the trial. I have recently started back on Herceptin but am now taking CO-Q-10 to help my heart (120mg per day which I will be increasing to 200mg in the next few weeks). I'm keeping my fingers crossed that my heart holds out long enough to complete treatment this time. My Onc is checking my heart every three months (Echocardiagram) to keep a close watch on the ejection fraction. Good Luck! Linda in Calif.

[SusanAnne]

Hi Laurie,

My EF started out similar to yours at 55%. After the AC portion (every 3 wks-I was in a trial) it fell to 54% and after the 12 wks of Taxol w/ Herceptin it fell to 51% (no symptoms). It was at that point I saw a cardiologist because I didn't want to be kicked out of the trial should it fall below 50%. At first I thought maybe going into a cardiac rehab program would be the thing to do, but the doc didn't think it would do the trick since I was already exercising 4-5 times a week. He started me on a Beta blocker and an ACE inhibitor (Corge and Accupril). I truly believe this is what enabled me to finish out my treatment plan with no interruptions.

Since I was his first Herceptin patient, the cardiologist kept me on the meds for 1 yr after I finished treatment (it's what he does with all his weakened heart pts). I am now weaned off and my last MUGA score was 60%. I also take 150 mg of Co-Q 10 daily.

Let us know how your MUGA goes in a few weeks! Best of luck.

Susan

[Gina]

On this topic, I will just say one thing to keep in mind is that too much herceptin can be a bad thing for your heart. The only way to know if you are getting to much...is to watch your tumor markers very carefully and try to take just enough herceptin to keep the CA 27/29 around 10 and the Serum Her-2 under 12. With that said, I will give you my experience. For many years, I only took Herceptin about 5 or 6 times a year. This was both good and bad. Eventually, I had to change oncs and the new one "convinced me" which is VERY hard to do...that by not staying on some regular dosing of Herceptin, I was opening myself up to all kinds of problems...and she turned out to be right as eventually, in addition to liver mets, I also got pelvic and bone mets..long story, but all this could have been prevented had I heeded the traditional wisdom{still, I got a lot of living packed into those early years}. Anyway, we were arguing over all this about the same time the studies out of Canada for the 6mg/kg every 3-weeks were coming out, so RELUCTANTLY, I agreed to do the higher dosing (I had only been taking the 2mg/kg). But since my body reacted amazingly as always to the herceptin, after only a few cycles on the 6mg/kg, I started to feel funny, out of breath, had trouble walking 1 mile, much less my usual 6...and I am sure those of you who "know" me will find this EVEN harder to believe...but I had difficulty talking...felt so tired and weak...then, after one particularly memorable dose of the Herceptin, I collapsed alone at home following heart palpitations and nearly died. About two weeks later, I got my CA 27.29 test back, the one that I had taken JUST prior to receiving the 6 mg of the Herceptin that nearly took me out of this world....it was ONLY 3 ....and as the herceptin tends to drop my numbers immediately as soon as I receive it...they must have gone way too low and suddenly I was having all these heart problems that I never experienced after years on Herceptin (my MUGA's are usually in the mid 60's). The next week, I called my onc and pointed the terribly LOW CA 27/29 out to her...she said it had nothing to do with my heart symptoms (and reminded me for the 100th time that she did not "believe in tumor markers" --I wonder if she has gotten past the Easter Bunny) and that she would see me the following week for my next scheduled 3-week dosing of YET another 6mg/kg. I REFUSED treatment and told her I was going all the way to Scotland so she could not STICK me and we would discuss upon my return in 6 weeks...funny but true..I did take my son to Scotland that year...it was a WONDERFUL ADVENTURE...we even road on the Harry Potter train and visited beautiful Isle of Skye. The ONC made me sign a waiver as of course NO ONE is apparently doing this.... Eventually, we negotiated the every 6 weeks (6mg/kg) Herceptin thing with very good results. My heart returned to normal. I can pump out my 6 miles in just under 2 hours and best of all, if my numbers do go out of whack and I can not bring them back in with diet and exercise, my onc allows me to take an extra cycle (one in-between the 6 weeks) to keep me ahead of the her-2. She really is good about getting me what I really need, despite the fact that we are just very different kinds of people.

I have seen Co-Q 10 do wonders...Co-Q10 in layman's terms is an enzymatic substance our bodies produce and exists, I believe I read, in every single cell. It has a lot to do with mitochondrial respiration. I personally do not use it, preferring to take PLAIN magnesium for the heart and eat onions instead...sigh...but that is just me...wink. However, I have posted on this site, that I worked personally with a woman who had severe colon cancer mets to the liver, lungs, bones, and possibly pancreas, and I watched her live an amazing QOL for 2 years AFTER all those mets and using the co-Q10 enabled her to breath beautifully until the very bitter end when she died NOT FROM cancer but from an accidental overdose of medication given to her in a WELL-KNOWN hospital...such a tradegy...she was doing her daily walks and everything..sighhh...Anyhow, if anyone has Congestive heart failure of any kind, go with the Co-Q10 and if anyone knows alcoholics out there who just can't get their act together and who refuse to go to AA, BUY THEM a BOTTLE of Co-Q10 and WATCH with your own eyes...the amazing difference in their personalities (especially the violent ones) and reduced alcohol consumption. But to be effective, they must keep taking the Co-Q10 daily. When the bottle runs out so to speak uh...of CoQ10 I mean...and if it is not replaced, the poor tortured souls will revert back to their less engaging ways... Fascinating... Warm regards to all, Gina P.S. Walking regularly and ingesting adequate magnesium and carefully monitoring Herceptin intake will keep the MUGA in a warm and fuzzy place...smile...GP