Muga results
 

I have been on Herceptin since 10/06. My muga prior to Herceptin was 59%. I assume this was the left Ventricle. Had another muga yesterday and it was 49% for the left ventricle and 13% for the right. (last mugs for right ventricle was 39%). I wanted a Muga 3 months into Herceptin by oncologist said not necessary. They immediately stopped the Herceptin, and now I have an appt. with a cardiologist. Does your heart "repair" itself after you stop Herceptin. What do you think the next step will be with the cardiologist. Needless to say, I'm a little nervous. After a few tears, I said, I just want to be normal!! Can anyone give me any insight on this?

I do not have knowledge about this but do know that heart damage from herceptin can repair itself when herceptin is stopped.

The part about "just wanting to be normal" I can relate to though. There are times as we walk this journey we just want to shout "enough already - I just want my life back."

Offering you love and support,

Mary Jo

Karla,

I can give you some information. I was to a cardiologist two weeks ago because my last Muga showed hypokinesis in the right ventricle; however, the left flow was 63%. I'm confused about what you say about the right ventricle as my cardiologist said that a Muga is mainly designed to look at the left. He added that my global reading was good so not to worry about the right. I'm going for an echo tomorrow just to be sure.

But, and this is important, he said that problems with the heart that are caused by herceptin heal themselves when you are taken off herceptin. I also wrote to my mother's cardiologist about this problem in case I wasn't satisfied with this new cardiologist and she responded in much the same way. So, although I don't know the story about the right ventricle, I'm pretty sure from what I've read and heard that you will recover and be okay. Malena, another member, from Italy, writes that her LVEF went down to 15% and is now up in the 40's. You can check her posts for more information. There's also lots of other information posted on Muga's and echos on this board. Search by Muga. Hope this makes you feel at least a little better.

momdeeco,

Don't despair. Here is a link to a recent thread on this board providing the one year follow up results on the Herceptin participants in the HERA trial: http://her2support.org/vbulletin/sho...eferrerid=1173

The results showed that even those patients with the worst CHF rebounded after a mean of 189 days. I know the frustration you are feeling, because I felt it myself. I had three straight MUGA decreases after only four months on Herceptin. I started reading the threads on this board about COQ 10, and added it to my diet. In six weeks, my MUGA was up 10%. Can't say for sure the COQ 10 did it, but a number of women here swear by it. Others have insisted on treatment by a cardiologist with Ace inhibitors or beta blockers to be able to continue taking Herceptin.

The bottom line is that the heart damage from Herceptin appears to be reversible, at least in the near term. The study participants will be followed for five years. I think these early results are very encouraging. You also have medical options available should you wish to pursue them. You may need to be a little aggressive with your medical team to get the treatment if you want it, but it is your life and your decision and I would not be bashful about insisting if you feel strongly about it.

Chin up, and best of luck to you.

Hopeful

Don't know about the right ventricle. I'm assuming it may always operate at lower efficiency than left.

A 10 point drop isn't way out of line. I think some docs hold 45 as the cutoff.

I went from 65 to 56 after AC and could feel how much more tired I was. Started COQ-10 after rads and went to 70 MUGA.

Everything I have read says you will recover if it's Herceptin.

If you are done with chemo and rads, try COQ10. Perhaps you will be able to restart H in 6 weeks or so. In any case, your situation shows why one should be scanned every 3 months, at least in the beginning. Bev

How many mg of CoQ10 are you taking? I take only 50 mg a day. Is this enough? Also take 1000mg of fish oil, and Vit. D 800 mg. Thanks to all for your support and encouraging words!

I take 300 mg of COQ 10 per day: 150 mg with breakfast, 100 with lunch and 50 with dinner. The advice I saw in the posts here was to build up gradually, so I started with 30 mg per day at breakfast and added an additional 30 mg every 4th day to get to where I am now. I also read to go easy on the evening dose as it may cause some sleep difficulty. FWIW, I have had no sleep problems since using it.

Hopeful

Karla,
I'm in your situation. I started herceptin in May 2006. I had 4 Muga's results all in the 60's. Feb 2007 muga 49. Had another last Tuesday. Got a call from Onc's office. They are stopping my herceptin. They did not give me my muga results though. Already had an appt with Onc on April 3rd. I'll have to wait and see what he recommends next. I have a ton of questions for him, so I hope he plans on more than 15 minutes for me.

Susan

I believe that 300mg to 400mg per day of CoQ10 is what is required. I am sure when I give the CoQ10 advice, I know I suggest the gradual build up method (like Hopeful is doing). Starting with 50mg at breakfast only for several days then adding another 50mg at lunch for several days (then 50mg at dinner - so now you're at 150 mg total for the day) and so on until you reach 300 -400. Like Hopeful, I took 50mg only at dinner throughout as literature says it can keep you awake so I eventually worked up to 250mg at breakfast, 150 mg at lunch and 50 mg at dinner.


Likewise (Herceptin was over for me in September), about 3 weeks after Herceptin was over, I started scaling back slowly too. You can't take 400 mg of a supplement for over a year and then just stop (although I do take 50 mg at breakfast everyday as part of my regime) so you also have to scale back gradually too.

I never had a problem with having to stop Herceptin but my initial aim was so I never had to. The fish oil is good and so is walking.

Becky,

How much COQ 10 do you take now that you have completed Herceptin?

Hopeful

I take 50 mg. It is sparse in the diet and it contributes to mitochondrial health. I will probably switch to 25 or 30 but have about one hundred 50's left so I'm going with it.

My husband's cousin is a nutraceutical salesman. When I first got cancer he recommended CoQ10 and IP3. Swore by it. I didn't take anything but a well rounded multi and fish oil tablets since I did the full course of chemo then I geared up with supplements when on Herceptin alone.

Karla,

Let us know what the cardiologist says. My Onc is repeating my muga at the end of April to see if it increases.

Susan