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Old 09-01-2006, 04:28 PM   #1
LovingDaughter
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Unhappy Anyone Else Forced to Stop Herceptin?

My mom started Herceptin seven weeks ago. She is taking it weekly along with Taxol for the first twelve weeks and every three weeks thereafter. Her heart scan came back at 55%, down from about 65%. The doctor said that the heart scan might not be accurate, as it is most accurate 2 1/2 weeks after treatment. Because she's on weekly herceptin, she had her heart scan only five days after treatment.

The doctor wants to take her off temporarily, do another scan in about two weeks, and then reassess.

Please let me know if you have had a similar problem. If you stopped Herceptin, did you start it back up again? Should I be concerned?

Any help you could provide would be greatly appreciated.
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Old 10-04-2006, 01:03 PM   #2
Melissai
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Hi my name is Melissa, I am 36 and I was diagnosed with stage 2 breast cancer. I am er/pr+, Her2/neu+ 2.1 FISH . I did four rounds of A/C and cytoxin and 4 rounds of Taxotere with weekly herceptin. I just finished the taxotere so they are moving me to every three week herceptin. When I went to the doc on monday they told me my muga scan had gone from 65 to 51. They said that I could still do two more treatments and then they would repeat my muga scan. I am alittle nervous about doing another treatment. they said if it is still low they would have to take me off the herceptin for a month or so to let the #'s go back up. Suppossedly this is normal and that it happens to alot of people. I would also love to hear frrom anyone that this has happened to and how long it took to come back up. My doctor did say that they expect this to happen.
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Old 10-05-2006, 10:11 AM   #3
Kimberly Lewis
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My score went down to 51 from 56 and I stayed on herceptin but started taking CO Q10. Had another muga in a little over 2 months and my score shot up to 59. I also am walking 4 -5 times a week. hope this helps..
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Old 10-05-2006, 06:08 PM   #4
LovingDaughter
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Melissa:

My mother's oncologist allowed her to go back on herceptin after missing only two weekly doses. Her heart scan increased after the two week break.

Hang in there! I wish you the very best on your journey.

Take care,
Jayne
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Old 10-05-2006, 06:14 PM   #5
Lolly
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Hi; Kimberly's experience with CoQ-10 is not unusual, as several of us here have used CoQ-10 to maintain good heart function. It comes in 50mg and higher gel caps, and some take as much as 300mg daily(work up to a higher dose gradually, and don't take all at once, rather several smaller doses over the course of a day). There have actually been studies done on the effectivness of this enzyme, you can google "Coenzyme Q10 studies" if you'd like to ascertain the saftey and effectivness for yourself, although I've included an excerpt from a very informative article plus the link to the whole article.
Be sure and talk to her doctor also, as this supplement is not recommended in too high a dose whilst on chemo, as it's a powerful antioxidant and some docs feel these can counteract chemo's effectivness. Hope this helps, also use the search field on this site to find others posts on CoQ-10.

P.S. If you post this question on the main message board, you may get more responses as not all read the Clinical Trial board


INTRODUCTION TO COENZYME Q10
By PETER H. LANGSJOEN, M.D., F.A.C.C.

http://faculty.washington.edu/~ely/coenzq10.html
DEFINITION

Coenzyme Q10 (CoQ 10) or ubiquinone is essentially a vitamin or vitamin-like substance. Disagreements on nomenclature notwithstanding, vitamins are defined as organic compounds essential in minute amounts for normal body function acting as coenzymes or precursors to coenzymes. They are present naturally in foods and sometimes are also synthesized in the body. CoQ10 likewise is found in small amounts in a wide variety of foods and is synthesized in all tissues. The biosynthesis of CoQ10 from the amino acid tyrosine is a multistage process requiring at least eight vitamins and several trace elements. Coenzymes are cofactors upon which the comparatively large and complex enzymes absolutely depend for their function. Coenzyme Q10 is the coenzyme for at least three mitochondrial enzymes (complexes I, II and III) as well as enzymes in other parts of the cell. Mitochondrial enzymes of the oxidative phosphorylation pathway are essential for the production of the high-energy phosphate, adenosine triphosphate (ATP), upon which all cellular functions depend. The electron and proton transfer functions of the quinone ring are of fundamental importance to all life forms; ubiquinone in the mitochondria of animals, plastoquinone in the chloroplast of plants, and menaquinone in bacteria. The term "bioenergetics" has been used to describe the field of biochemistry looking specifically at cellular energy production. In the related field of free radical chemistry, CoQ10 has been studied in its reduced form (Fig. 1) as a potent antioxidant. The bioenergetics and free radical chemistry of CoQ10 are reviewed in Gian Paolo Littarru's book, Energy and Defense, published in 1994(1)…

TREATMENT OF HEART DISEASE WITH COENZYME Q10

CoQ10 is known to be highly concentrated in heart muscle cells due to the high energy requirements of this cell type. For the past 14 years, the great bulk of clinical work with CoQ10 has focused on heart disease. Specifically, congestive heart failure (from a wide variety of causes) has been strongly correlated with significantly low blood and tissue levels of CoQ10 (15). The severity of heart failure correlates with the severity of CoQ10 deficiency (16). This CoQ10 deficiency may well be a primary etiologic factor in some types of heart muscle dysfunction while in others it may be a secondary phenomenon. Whether primary, secondary or both, this deficiency of CoQ10 appears to be a major treatable factor in the otherwise inexorable progression of heart failure.

Pioneering trials of CoQ10 in heart failure involved primarily patients with dilated weak heart muscle of unknown cause (idiopathic dilated cardiomyopathy). CoQ10 was added to standard treatments for heart failure such as fluid pills (diuretics), digitalis preparations (Lanoxin), and ACE inhibitors. Several trials involved the comparison between supplemental CoQ10 and placebo on heart function as measured by echocardiography. CoQ10 was given orally in divided doses as a dry tablet chewed with a fat containing food or an oil based gel cap swallowed at mealtime. Heart function, as indicated by the fraction of blood pumped out of the heart with each beat (the ejection fraction), showed a gradual and sustained improvement in tempo with a gradual and sustained improvement in patients' symptoms of fatigue, dyspnea, chest pain, and palpitations. The degree of improvement was occasionally dramatic with some patients developing a normal heart size and function on CoQ10 alone. Most of these dramatic cases were patients who began CoQ10 shortly after the onset of congestive heart failure. Patients with more established disease frequently showed clear improvement but not a return to normal heart size and function.

Internationally, there have been at least nine placebo controlled studies on the treatment of heart disease with CoQ10:two in Japan,two in the United States, two in Italy, two in Germany, and one in Sweden (17,18,19,20,21,22,23,24,25). All nine of these studies have confirmed the effectiveness of CoQ10 as well as its remarkable safety. There have now been eight international symposia on the biomedical and clinical aspects of CoQ10 (from 1976 through 1993 (26,27,28,29,30,31,32,33)). These eight symposia comprised over 300 papers presented by approximately 200 different physicians and scientists from 18 different countries. The majority of these scientific papers were Japanese (34%), with American (26%), Italian (20%) and the remaining 20% from Sweden, Denmark, Germany, United Kingdom, Belgium, Australia, Austria, France, India, Korea, Netherlands, Poland, Switzerland, USSR, and Finland. The majority of the clinical studies concerned the treatment of heart disease and were remarkably consistent in their conclusions: that treatment with CoQ10 significantly improved heart muscle function while producing no adverse effects or drug interactions.

It should be mentioned that a slight decrease in the effectiveness of the blood thinner, coumadin, was noted in a case by a Norwegian clinician (34). This possible drug - CoQ10 interaction has not been observed by other investigators even when using much higher doses of CoQ10 for up to seven years and involving 25 patients treated with coumadin concomitantly with CoQ10 (this is still, as of this date, unpublished data).

The efficacy and safety of CoQ10 in the treatment of congestive heart failure, whether related to primary cardiomyopathies or secondary forms of heart failure, appears to be well established (35,36,37,38,39, 40,41,42). The largest study to date is the Italian multicenter trial, by Baggio et al., involving 2664 patients with heart failure (43).

The most recent work in heart failure examined the effect of CoQ10 on diastolic dysfunction, one of the earliest identifiable signs of myocardial failure that is often found in mitral valve prolapse, hypertensive heart disease and certain fatigue syndromes (44,45). Diastolic dysfunction might be considered the common denominator and a basic cause of symptoms in these three diagnostic groups of disease. Diastole is the filling phase of the cardiac cycle. Diastolic function has a larger cellular energy requirement than the systolic contraction and, therefore, the process of diastolic relaxation is more highly energy dependent and thus more highly dependent on CoQ10. In simplier terms, it takes more energy to fill the heart than to empty it. Diastolic dysfunction is a stiffening' of the heart muscle which interferes with the heart's ability to function as an effective pump. It is seen early in the course of many common cardiac disorders and is demonstrable by echocardiography. This stiffening returns towards normal with supplemental CoQ10 in tempo with clinical improvement.

It is important to note that in all of the above clinical trials, CoQ10 was used in addition to traditional medical treatments, not to their exclusion. In one study by Langsjoen et al (46), of 109 patients with essential hypertension, 51% were able to stop between one and three antihypertensive drugs at an average of 4.4 months after starting CoQ10 treatment while the overall New York Heart Association (NYHA) functional class improved significantly from a mean of 2.40 to 1.36. Hypertension is reduced when diastolic function improves. In another study(39), there was a gradual and sustained decrease in dosage or discontinuation of concomitant cardiovascular drug therapy: Of 424 patients with cardiovascular disease, 43% were able to stop between one and three cardiovascular drugs with CoQ10 therapy. The authors conclude that the vitamin-like substance, CoQ10, "may be ushering in the new era of cellular/biochemical treatment of disease, complementing and extending the systems-oriented, macro and microscopic approach that has served us well to this point"….

.

…3. What is the dosage of CoQ10?

The dosage of CoQ10 used in clinical trials has evolved over the past 20 years. Initially, doses as small as 30 to 45 mg per day were associated with measurable clinical responses in patients with heart failure. More recent studies have used higher doses with improved clinical response, again in patients with heart failure. Most studies with CoQ10 involve the measurement of the level of CoQ10 in blood. CoQ10 shows a moderate variability in its absorption, with some patients attaining good blood levels of CoQ10 on 100 mg per day while others require two or three times this amount to attain the same blood level. All CoQ10 available today in the United States is manufactured in Japan and is distributed by a number of companies who place the CoQ10 either in pressed tablets, powder-filled capsules, or oil-based gelcaps. CoQ10 is fat-soluble and absorption is significantly improved when it is chewed with a fat-containing food. Published data on the dosage of CoQ10 relates almost exclusively to the treatment of disease states. There is no information on the use of CoQ10 for prevention of illness. This is an extremely important question which, to date, does not have an answer….”

Peter H. Langsjoen, M.D., F.A.C.C.,P.A. 1120 Medical Dr. Tyler, Tx 75701 Copyright 1994
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Old 10-05-2006, 10:48 PM   #6
pel50
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I have the same regimine and I stopped Herceptin after the first loading dose for 3 1/2 weeks while my heart recovered from 45% to 52% ejection fraction. My onc's cutoff for me was 50%. He explained that Herceptin blocks the hearts ability to heal itself, so if I were to continue Herceptin at 45%, I'd be at risk because my heart would not recover beyond 45%. But a few weeks off Herceptin and I resumed the protocol because the ECHO showed my EF recovered to 52%.
We simply will extend the end date of Herceptin, but I will get all the doses. This has not been a problem with anyone I have discussed it with both patients and oncs. It happens to many patients.
I would not be concerned. Seems to happen from time to time.
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Old 10-06-2006, 09:04 PM   #7
Shannon
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Smile

Hello!

I began Herceptin about 6 months after I completed AC and Taxol. Before all the chemo my infraction rate was only at a 58. I have dropped as low as 38 with everyone scratching their head... I was 33 when diagnosed and I just turned 36. I was on Herceptin for about 3 months and then was pulled as they want your infraction rate above 50, I was pulled for 8 weeks until I got back up to a 52, then was pulled once again for 6 months as I dropped to a 42. Im not sure why I am all over the map, in fact no one has been able to tell me... but during my 6 month break I took CoQ10 and Flaxseed DAILY and I was SHOCKED to go in for an ECHO and have by infraction rate be at a 55. So, I am on my 3rd dose of the remaining 16 to fulfull my 52 week treatment.

It is always good to remain active, and I swear by the CoQ10 and flaxseed, but what worked for me doesnt necessarily work for all. But definately worth a try!

Keep the faith and continue to fight the good fight!

Shannon
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Old 10-08-2006, 09:14 PM   #8
Melissai
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Thank you all so much for all of your posts. I feel much better now about my muga and if I have to go off the herceptin for a while. Thank you so much for all of the information about co enzyme Q 10 as well. I asked my onc and she said it was fine to take just not to take large doses. Thanks again. Hope all of you are feeling well. Melissa
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