LVEF drop - off herceptin - CoQ10 and?????

Donna · 06-13-2007, 10:54 AM

Hi Amazing Group,

Well, my lvef dropped again, this time 15 points, so no more herceptin for a month at least. I have been taking CoQ10 since years before this all happened and still take 200 a day. Anything else known out there to help with this heart mending?

The first time my lvef dropped 13 points, but bounced back up on the next test. This time it dropped from 67 to 52. :-(

I have had 8 months of treatment - I remember reading somewhere about a Finnish (?) study that showed 9 treatments were effective - anyone know about this or where it is at in study now?

thanks for you help, your input and I hope you are all having a wonderful day!

Donna

Hazel Joyce · 06-13-2007, 12:48 PM

Hi, Donna. I am also off Herceptin for 4 weeks. My LVEF dropped from 65 to 51%. I'm still getting Taxol (3 doses left), so I can't take CoQ 10 yet. I have an appointment with a cardiologist on Friday. My feet and ankles are very swollen. I'll be having a repeat MUGA scan in 4 weeks to see if I can resume the Herceptin.

There is a thread that was started on 8-30-06 about the FinHer study:
http://her2support.org/vbulletin/sho...ghlight=finher

Susan · 06-13-2007, 03:08 PM

I had to quit herceptin due to low LVEF too, after 8 months, but I was told European studies showed 6months of herceptin is just as effective as 1 year. So I feel confident that I'm doing good. I feel great and my last muga showed much improvement!

Sue

Susan · 06-13-2007, 03:10 PM

oh, my the way, I tried CoQ10, and I had terrible heartburn from it, and had to discontinue it..........oh well, I tried!

Susan McQ · 06-13-2007, 05:26 PM

My LVEF was 47 when I was required to take a break. Prior to that it was in the 60's. It went up to 54 and I was allow to complete my last 6 treatments.

I have another MUGA in 2 weeks to see if those treatments lowered my LVEF again.

Susan

Joe · 06-13-2007, 06:40 PM

To ALL:

Important

Try to schedule your MUGA or ECHO as close as possible PRIOR to your scheduled day of receiving Herceptin.

Try to maintain this schedule for all future tests.

When infused, Herceptin will cause an ejection factor drop in all patients, if you are on a triple dose, your drop will be even more dramatic.

By changing your test schedule:

1. Your heart will be at its strongest
2. There will be less fluctuation if done at the same time in the infusion cycle.

Regards
Joe

Donna · 06-13-2007, 10:05 PM

Hi All,

I took my last MUGA test on Thursday and had herceptin scheduled for the following Tuesday. I am surprised my oncologist actually called me on Monday to cancel the herceptin, that was quick! I get infusions every three weeks and will be careful with future MUGA's to keep them out from that time.

Thanks for bringing this up.

Donna

chrislmelb · 06-13-2007, 11:35 PM

Donna, as my MUGA was slowly dropping I thought i needed to do soemthing so i could stay on Herceptin. So i joined a gym and stated taking CoQ10 and fish oil. It has improved slightly but more importantly, it hasn't dropped.

SoCalGal · 06-14-2007, 08:20 AM

There is a doctor at ucla - he's an MD in their Integrative Oncology Dept. His area of study and expertise is keeping the heart healthy during chemo. He pioneered the work with CO Q 10 and other supplements.

Just as a side note, I have never been able to tolorate vitamins in the past - always gastro probs. I am taking about 20 pills a day - NO PROBS. The brand he recommmends seems very pure - in fact, the co q 10 pills are in chewable form for optimum effect. From Douglas Laboratories.

His name is Doctor Kenneth Conklin. Maybe you can call about a consult or try and find his research on the subject.

Good Luck!
Flori

janet11 · 06-14-2007, 09:10 AM

One time I actually had the Herceptin scheduled 2 hours after the MUGA. When they got the results (lvef 49), they came in and disconnected the IV and threw it away (*sigh*). But that's about as 'wait until the last minute' as it can get (*laugh*).

Donna · 06-14-2007, 09:58 AM

Hi Flori,

I did check out Dr. Conklin and also the Douglas Labs CoQ10 - and I ordered it! Sounds like the best one out there. Can I ask, does Dr. Conklin recommend all the supplements you take from Douglas Labs or just this one? I will still check out getting a phone consult, but I was just curious - y'know - TODAY. :-) Not the patient type.

Have a great day!

Donna

janet11 · 07-03-2007, 02:57 PM

Quick update. I was on Herceptin for 7 months when my LVEF dropped below 50% (just to 49%) in May. 3 weeks later, it was 48%. Now I just got my results from a MUGA in July and it has dropped to 44% (with the right side being affected too for the first time). So I'm permanently off Herceptin and will have a MUGA in 3 more months hoping that it's finally going UP instead of down.

The good thing: I've called my surgeon's office to schedule getting my port removed. Poke a fork in me, I'm DONE! (*grin*)

Janet