muga keeps dropping

Terri B · 05-18-2009, 01:21 PM

my latest one was 53%. Onc didn't like it much. She ordered my next one in two months.

So, do you have physical symptoms of a low muga? Is this why I can't seem to motivate myself to do much? Is this why i wake up with puffy eyes? Is this why my left ankle swells after work? Is this why my stomach bloats sometimes like I'm 8 months pregnant? Is this why my supraclaviclar lymph nodes are puffy on the right side?

Onc has ordered new bone scan and CT scan of my neck, chest & pelvis just to "be sure".

ugh. I hate to worry. I worry enough about my children & husband.

Becky · 05-18-2009, 03:05 PM

Dear Terri

Ain't Cancerland something else! You should call or email your onc to see if you can try CoQ 10 as a supplement. It does have bonefide results to improve heart function (by trial where 390 mg per day were taken).

If your onc says yes (since you aren't on chemo right now as it is an antioxidant (and Herceptin is immunotherapy not chemotherapy)) then you should slowly work your way up to about 400mg per day. Start with 50mg with breakfast for a few days. Then use 50 mg with breakfast and lunch for a few days. Then 50mg for breakfast, lunch and dinner. After that, use 100mg at breakfast but 50 mg for lunch and dinner. I think you get the picture - until you are at 400 mg per day (divided throughout the day as 150 mg for breakfast and lunch and 100 mg for dinner). It really does help some people alot.

Also, try to take the smallest or walks and try to build up alittle endurance. Go a couple of houses down the block and back. After a couple of days, add a few more houses and try to pick up the mileage and pace. It really helps the heart too.

Try not to worry too much about anything else. Herceptin can cause puffy eyes but the ankle could be diminishing heart function - but you are above 50 so that is a normal reading.

You can improve this. Always ask your medical team since you will be adding supplements (maybe).

I am thinking about you and giving you a huge cyber hug.

Jackie07 · 05-18-2009, 08:09 PM

Terry,

Don't lose heart. I remember there is a lady on the board mentioning about her 'exercising' to bring up her MUGA and succeeded. I believe she was also taking some kind of supplement or prescribed medicine.

Mine had dropped also, but I have mitral valve prolapse, so I have to be very careful if I am going to try the exercise route. Yes, I had the knee and ankle swelling when I was exercising a lot back then. It is because the heart is not able to pump to blood (fluid) back in a sufficient way.

Hang in there.

ElaineM · 05-18-2009, 08:26 PM

What about Co Q 10? I took Herceptin non stop for many years and never had a problem. My LVF never went below 60-65. I look Co Q 10 every day.

juanita · 05-19-2009, 03:09 PM

i did the coq10 and my muga went up. talk to your dr first though.

Barbara2 · 05-19-2009, 08:16 PM

I agree...talk to your onc about using CoQ-10. I took it during herceptin and still using it now.

SoCalGal · 05-19-2009, 09:50 PM

I'm with Becky on the supplements. I am going for an echo 3d on Friday, also just to be sure. I have been really struggling with my energy level since having the flu, finishing up radiation, etc. I am pushing my drip up a week to give myself an extra week to replenish. It is a constant battle - either cancer or side effects. Good advice on the exercise. Tomorrow I will add in more walking myself. And I will think of you, Terri!

Terri B · 05-20-2009, 03:00 PM

I will surely ask about this coq10. Is this a vitamin?

I just feel zapped. No gumption. It's emotional too. My son left for basic training this week and I'm a little crushed. I'll get over it.

Thanks for all the advise!

CindyE · 05-20-2009, 07:08 PM

Terri,
My first muga score was 55 which really scared me but then the next one was 61.9 so take heart as they can go up and down. I too take the supplement CoQ-10. I think it helps and my mugas have stayed about the same over the last 9 months. I do have a follow-up one in June just to make sure as I finished my one year of Herceptin at the end of April. Take care and try not to worry.

Joan M · 05-20-2009, 08:53 PM

Terry,

I believe that the normal range for muga scores is 50-70, and my onc told me that if a muga score drops 10%, even if it's not below 50, that Herceptin should be stopped until the muga goes back up. Apparently, that's the guideline.

When I took neoadjuvant Herceptin my score always stayed in the low to mid 60s, but since my bc advanced, the score hasn't been stable. My onc took me off last fall for three months when my score went from 70 to 57.

Lately, I've been getting echos to try to eliminate another invasive procedure like the muga. The echos are not as accurate.

Joan

Terri B · 05-21-2009, 07:10 AM

Just talked to one of my onc's nurses. She said she didn't see a problem with taking it, but she would check with my onc to be sure.

Where can you buy this stuff? Do I have to go to a GNC or something? Or do they sell it at walgreens or wal-mart?

Thanks for all the info! I'm hoping this will help perk me up a bit!

CindyE · 05-21-2009, 11:08 AM

Terri,
I bought mine at Walmart and most everywhere sells it. Good luck and hope it helps.

Terri B · 05-21-2009, 11:25 AM

Thanks CindyE for the info!

StephN · 05-21-2009, 12:52 PM

Hi Terri -
Sorry your side effects are taking a while to resolve. Happens to most of us!

As for the supplements I take, I am cautious about where I buy them. I want to avoid ingredients from China (which is difficult!), and patronize companies with sterling reputations. Remember that supplements are not subject to FDA oversight so I try to look for "standardized" on the labels.

I found a CoenzymeQ10 from JARROW that is 100% natural and has "enhanced absorption" for better usage. Called "Q-absorb." The main ingredient comes from Japan. I get the 100mg softgels.

In Wasington here we have a discount vitamins chain called Super Supplements. I am sure you could find it on line. The GNC usually has their own brands, and only a few others. My supplement store has all the best researched brands of anything you want.

P.S. It is only natural to worry about your son. The military is engaged in many hot zones these days.

shondagaylord · 05-21-2009, 07:20 PM

You can't take CoQ10 while on a chemo is that correct? My echo is showing a 47% on ejection fraction down from 56 4 month ago. They are stopping herceptain and we will recheck in 6-9 weeks they said. They told me it will heal itself, but exercise will help obviously. I used to take the coQ10 but if I remember correctly I had to stop once I started taxol. i am currently on navelbine and next week or so they are changing me back to taxol and Avastin. Sorry I am no help onthis thread and I only have questions.
Thank you

jhandley · 05-22-2009, 05:51 AM

Hi
I have been on q10 for 8 years and can vouch for its effectiveness for raising MUGA. The only problem I have is taking more than 200 mg/day keeps me awake at night. Whenever I have dropped it down to 100-150 mg my MUGA drops a bit. When I up it my MUGA goes up. The same happens to my blood markers; once i took 300 mg for 2 weeks before a blood test and my markers dropped very low; didn't get much sleep mind you!

In relation to taxol you can still take the q10 just stop it 3 days before chemo and dont take it until at least 24 hours after; this is because q10 has a half life of 30 hours so after 90 hours it will be 1/2 x 1/2 x 1/2 =1/8 of its initial value, which will be low enough so it won't interfere with the taxol. The taxol does its good work in the first 24 hours after infusion (so my doctor told me)so wait until 2 days after chemo then take it again. This is what I did when I had taxol and my 15 mm liver spot disapeared in a few weeks (and hasn't come back 4 years later).

I also take high dose fish oil and 25 g of flaxseed most days; see other posts on why these are good.

Cheers
Jackie (down under)

shondagaylord · 05-22-2009, 06:01 AM

I will be doing taxol weekly. How did you take it to be able to follow those days to take Co Q10?

jhandley · 05-23-2009, 04:05 AM

Hmm..you could take it day 2 (50 mg) then 100 mg on day 2,3,4,5 and then nothing day 6,7,1 and repeat.
That would work.

shondagaylord · 05-23-2009, 05:42 AM

Thank you for this info. I am taking it with me to the cardiologist Tuesday.

Terri B · 05-26-2009, 09:17 AM

Ok, all you CoQ-10 experts:

I think I might have bitten off more than I can chew. I bought 200mg softtabs. I took one at dinner time last thursday. Friday morning, (12 hours later) i was violently ill. UGH.

I don't know if the CoQ-10 caused it. I'm not the sickly type, but it could have been a bug or something. If you take too much, does it cause vomiting? Is this possible? I am afraid to take it again! HELP!