low echo had to stop herceptin

[kk1]

I want my security blanket back! I've been walking around in denial all week. My recent echo was down to 42. It has been slowly decreasing over the past two years, started in the high sixties and had been hovering around 48-46 for the last echo's. At 42 My Onc. pulled the plug and stop my next two rounds of Herceptin, will then have another echo in 6 weeks.

The good news is that all my markers including my serum Her2 are low, so I am not too worried---until the night time comes .

I am wondering :

1. How many of you stage IV have had to stop Herceptin and how long did it take for your heart to recover?

2. Is there any evidence that weekly is easier than 3-week? I thought I had read that 3-week was easier on the heart? I was on 3-week.

3. I am taking 150mg coQ10, and exercising any thing else that might help?
note: I am er+/pr+ also...so I have to watch the estrogen potential of any supplements.


thanks
for any input
kk1

[Becky]

If you are only on Herceptin, you can take a larger dose of CoQ10. I am taking 300mg per day (100mg 3 X a day). If you are on chemo drugs too then this would be too much of a dose.

You could also get an evaluation from a cardiologist who might put you on some medications to improve heart function (just a thought as some women on this board do that).

Best wishes

Becky

[TriciaK]

Boy, can I relate to the loss of a security blanket! I too was just pulled off herceptin because of a low echo(30) and low muga (37). The MUGA was 57 about 6 months ago, but I started out on herceptin after a heart attack, so I felt blessed to have had it for over a year. THere were two weeks between the echo and muga, and I like to think the muga was a little higher because right after the echo score I doubled up on coQ10, fish oil and garlic pills. Whatever exercise you can gradually add will help build the heart up too. I posted a day or so ago about my scores and having to stop herceptin and received some wonderfull replies that might also be encouraging to you if you look them up. I keep reminding myself that any heart weakness caused by herceptin can be reversed; it isn't permanent. If needed, it is possible to go back on herceptin at a later date. And everything worked because my last PET scan showed NED. I have come a long way since being diagnosed in June of '04 with first a heart attack and then lung mets, and even farther since my first BC diagnosis 20 years ago. There may even be better things ahead than herceptin, so hang in there! Hugs, Tricia

[Lolly]

KK, sorry about this, it's a worry I know. But as you say, everything is looking good now, so hang in there and hopefully things will be looking UP in six weeks

Just out of curiosity, how soon after you had your Herceptin dose did you have your echo? This is strictly off the cuff, but when I was on 3 weekly Herceptin I noticed that if I had an Echo within a few days after Herceptin, my score would be lower by sometimes as much as 5 points.

Don't stress too much over this as the 3 weekly stays in the system at therapeudic levels for up to six weeks.

We'll keep our fingers crossed that your Echo will be ok again and you will have your blanket back!

<3 Lolly

[Gina]

For many years..., I only took 5 or 6 weekly doses A YEAR..and I still survived..it will hang in your system for some time, even when you are not taking it. Also, I was able to go a year and a half just taking one 6mg/kg dose every 6 weeks, so it is quite manageable, but DO KEEP checking those markers...by quite low, did you mean that the serum her-2 was in the single digits?? you know...like 7 or so and Where was the CA 27/29???

Plus, there are lots of benefits of getting a break from Herceptin...so ENJOY!!! but keep on your own personal regimen...I, personally, find magnesium, onions, beets and walking really good for the heart muscle...I have been on Herceptin for many years, in varying doses..but my muga is still in the 60's...but I do walk a lot and eat very well...and do all my other regimen too.

Best to you,
Gina
GPopp@Comcast.net

[BonnieT]

Hi
I also had to stop herceptin due to low MUGA at the time I was taking it every 3 weeks. if you are not seeing a cardiologist , I suggest that you do. he put me on 2 heart meds coreg, and lisinopril. he also did an echo, and found no heart damage.
after about 2 months of no herceptin my MUGA went back up, it was 52 then 36 back up to 51. I also started taking my herceptin weekly instead of every 3 weeks, you take a lower dose each week which equalls the 3week dose. I also take my heart meds and 100 mg coq10,. and my last MUGA was 49.7.
I don't believe there are any studies showing that the weekly hercpetin is easier on your heart but it works for me, it is kind of a pain going in every week but it is that or my MUGA drops so I will keep doing it !!!!!!!!!!!!!!!!!!!!
Good Luck and keep us posted
BonnieT

[athena453]

Found out today that I dropped from 60 to "between 40-50". My onc is pulling the Herceptin until I finish rads in January. Tomorrow would have been my first three week dose. I asked her about the COQ10, she said to check with the rads onc. I've only had two rads so far. Anyone heard of not taking it during rads?

[kathy]

This is my first time on the site and I cant believe how great it is to have a group who can share experiences and knowledge accumulated from experience!! It is so helpful!!

I am starting Herceptin Friday in conjunction with chemo. I have stage IV with mets to bone, and very recently to lung & liver. Last 3 years things went well on Arimidex, but recent change requires something different.

You mentioned that 300mg of coQ10 was too much if you are on chemo. What amount did you take on chemo? Any recommendations out there. Also, did you get resistance from your oncologist?

Thanks!!

[Becky]

Kathy


100 mg of CoQ10 is the amount that can be taken while on chemo.

Best regards

Becky

[kk1]

I am so excited. Saw my Onc today to find out the results from all the various tests I have been having over the last few weeks. My heart function is back up to 55-65%, and results from my bone scan, cat scan, brain mri, were all clear no evidence of disease anywhere!!!!!! To top that off my annual bone density test showed that I actually had gained back some of my bone loss with a score of -0.7 which is normal...I had been -1.6 previously. What a great way to start the new year!!!!! On sunday my husband and I leave to go skiing in vail for the week sans kids. I'll start my routine 3-week herceptin when I return.

wishing you all the best in the coming year. Thanks for keeping me company while I was without my herceptin.....you folks are my true security blanket.

lol
kk1

[BonnieT]

That's GREAT news !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
enjoy your vacation !!!!!!!!!!!!!!!!!!
BonnieT

[Sandy H]

Why do some of you have echos and some have mugas to check the heart? I think I will ask for echos because those are easier to do. Laying on my back with my arms over my head is really difficult for me. Just wondered if one is better then the other. hugs, Sandy

[kk1]

Hi Sandy;

Hope your staying warm up there in Maine. I use to have mugas but about a year ago my onc switched to echos. He said he found echos reliable enough for making decisions about heceptin, particularly for stage iV when you have to monitor long term and would rather not have the radioactive injections that go along with mugas.

kk1

[julierene]

WOW KK1, your are a real inspiration for me! I hope to be in your shoes one day!!!!