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02-16-2007, 07:46 AM
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#1
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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LVEF Update
Had my fourth MUGA this morning. I started Herceptin in August; my base MUGA was 74. After 3 months, it was down to 64; the next one 6 weeks ago was 60. Based on what I read on this Board, I started taking C0Q10, 30 mg. per day for three days, then increasing another 30 in the same fashion until I got up to 300 per day. My test today was 66! I would never have known about C0Q10 if not for this Board. Needless to say, I am delighted with the result. Just wanted to share.
Hopeful
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02-16-2007, 01:47 PM
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#2
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Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
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Though i am done with herceptin at this point, I got my muga up too using coq10. The tech doing it was amazed that it had gone up instead of down.
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02-16-2007, 02:17 PM
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#3
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Guest
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And how about flaxseed!
Hi Hopeful, Great for you and thanks for information. I am also concerned about my LVEF and also my right ventricle, and I plan to purchase C0Q10 this afternoon.
And now my recommendation. Although my cancer was very small (5mm), with no node and vascular involvement, my CA 27-29 was elevated when taken before I began chemo and herceptin and it has stayed that way for nearly six months (at 45). My doctor said "not to worry, this is your normal." About six weeks ago I began taking 25 grams of flaxseed (ground fresh) in my cereal every morning, in addition to lots of other supplements. This time around, my CA 27-29 dropped eight points, so that it's now 37.8. The outside range for normal is 37.7 at my lab. Of course, I would like to see it lower. I can't say for sure that the flaxseed did the trick, and you can't say for sure that C0Q10 brought up your LVEF, but why take chances.
I'm taking fifteen supplements now and the bottles are growing!
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02-16-2007, 02:53 PM
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#4
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Grace, congrats to you, too! You are right of course, neither of us can say for sure what gained us those good results, but I agree, if the supplement does no harm, by all means, give it a try. (There are lots of good threads on both supplements on the Board that can be searched for anyone curious about them.) I also know what you mean about those bottles multiplying! Take care and good luck.
Hopeful
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02-16-2007, 04:29 PM
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#5
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Senior Member
Join Date: Jul 2006
Location: Shingle Springs, CA - near Sacramento
Posts: 295
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long road to better LVEF
Hello Group,
Sort of a long story – but – I was experiencing the nasal drips described here on the forum frequently as a side effect of chemo, but my oncologist sent me to and ENT just to be sure. The ENT said it was a massive sinus infection (I saw it on the CAT scan) but she also said based on my nasal/throat structure and weight (30-40 lbs. over ideal) that I probably had sleep apnea and so she sent me for a sleep study. This confirmed sleep apnea and I was given a CPAP machine.
In the meantime, before the machine, my LVEF MUGA score dropped from 68 to 55. After using the CPAP for a month it went back up to 67. I was already taking COQ10 before and during and after the drop, so I can’t give it all the credit. The only other thing I have changed was to balance my Omega 3’s and Omega 6’s better.
So, anyway, if you snore, if you are maybe a little overweight, if you wake up a lot at night, it might be sleep apnea and if it is it takes a terrible toll on your heart. It affects your RVEF even more than the LVEF. I always thought I was waking up over and over all night because my husband snores, but it turns out it was me!<O
I was going to post this because I was elated at the jump back up of my heart function and then this subject came up. Sleep studies aren’t too hard to come by and it could literally save your life if you have sleep apnea. I would never have checked this out if all of this “cancer stuff” hadn’t led me to it.
“Now a small study appears to show that CPAP boosts LVEF even as it preserves cardiac "efficiency"—“ not too much out there on the subject yet, but some small studies have been done….<O
Have a great day!<O
Donna<O
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02-16-2007, 05:03 PM
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#6
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Long term effect of Herceptin on Heart
After A/C and right before Herceptin my LVEF was 65%. It dropped to 60% and has stayed that way for my last 3 echocardiograms. I've been taking the COQ10. My concern on my last echo was that I have atrial enlargement which was not on any previous echos. Onc nurse said it's from the Herceptin. Oncologist doesn't seemed concerned about it since my LVEF is 60%. I am concerned because once you have heart enlargement of any sort it doesn't go away. I'm wondering what the long term effect of Herceptin on the heart is. I think that the oncologists should be looking at more than just the LVEF.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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02-17-2007, 05:44 AM
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#7
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Kate,
>>I'm wondering what the long term effect of Herceptin on the heart is. I think that the oncologists should be looking at more than just the LVEF.<<
Amen!
Hopeful
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02-17-2007, 09:48 AM
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#8
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Hopeful,
I couldn't agree with you more! There is so much more to the heart than the LVEF. I now have an atrial enlargement that the onc said will probably not go away once I finish Herceptin. Needless to say, I'm worried. I might be able to kick the disease but then my heart will fail.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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02-19-2007, 02:49 AM
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#9
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Senior Member
Join Date: Sep 2005
Location: Melbourne Victoria
Australia
Posts: 330
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lots of science to back up Q10
Hi everyone
I am one of those who recommend Q10 for heart function. There are too many studies to mention which support its use for heart health and a significant number for its anticancer effect. Its effects on improving MUGA's are without question. There are also a number of anecdotal reports for people with metastatic disease who have lived many years with Q10 as their main treatment. Of course since it cannot be patented the drug companies are not interested in it.
I dont have time to post more now but if anyone is interested you can email me and I will send latest info.
cheers
Jackie
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