A Very Disappointing Day

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olduser
olduser Member Posts: 24

My partner who has Stage IIIC HER2+ breast cancer found out that she cannot start her clinical trial for Tykerb today as she had hoped. She was accepted into the ALTTO trial earlier this year, and is suppose to have the Tykerb instead of Herceptin for the remainder of her treatment. She did have 12 weeks of Taxol/Herceptin, which ended April 10. She is currently getting radiation.

Unfortunately, her last Echo was at 48 LVEF. She has to be at 50 to be in the trial and get the Tykerb. She has three weeks for it to improve or she's out of the trial. I'm not sure what that will mean for her treatment. Will she be able to get Herceptin, which is the normal course of treatment? I don't want her to go too long with no treatment.

Has anyone here had an LVEF problem and what did you do to improve it? Stress relief, diet, exercise?

They are going to do another Echo in a couple of weeks, with hopes she'll be at 50 or above. Please keep good thoughts, say a prayer, or send positive energy her way. She is very disappointed at this recent development, as am I. We are both hoping it works out and that the Tykerb gives those little cancer buggers a run for their money.

Thanks, and you are all in my prayers. 

Mary 

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  • 07rescue
    07rescue Member Posts: 168
    edited May 2009

    There are tiny shreds of evidence that the antioxidant Coenzyme Q10 can help with ejection fraction and repair the heart muscle damage from Herceptin and past chemo, in both animal and human studies. I take daily along with my Herceptin treatments and have had no lessening of EF after 6 months of treatment. 

    Here is a National Cancer Institute article that cites the relevant clinical trials that have been done.

    http://www.cancer.gov/cancertopics/pdq/cam/coenzymeQ10/HealthProfessional/page6

    Human/Clinical StudiesThe use of coenzyme Q10 as a treatment for cancer in humans has been investigated in only a limited manner. With the exception of a single randomized trial,[1] which involved 20 patients and tested the ability of coenzyme Q10 to reduce the cardiotoxicity caused by anthracycline drugs, the studies that have been published consist of anecdotal reportscase reportscase series, and uncontrolled clinical studies.[2-7] Reviewed in [8-11]In view of the promising results from animal studies, coenzyme Q10 was tested as a protective agent against the cardiac toxicity observed in cancer patients treated with the anthracycline drug doxorubicin. It has been postulated that doxorubicin interferes with energy-generating biochemical reactions that involve coenzyme Q10 in heart muscle mitochondria and that this interference can be overcome by coenzyme Q10 supplementation.[3,12,13] Studies with adults and children, including the aforementioned randomized trial, have confirmed the decrease in cardiac toxicity observed in animal studies.[1-4]The potential of coenzyme Q10 as an adjuvant therapy for cancer has also been explored. In view of observations that blood levels of coenzyme Q10 are frequently reduced in cancer patients,[14,15] Reviewed in [7,9,10] supplementation with this compound has been tested in patients undergoingconventional treatment. An open-label (nonblinded), uncontrolled clinical study in Denmark followed 32 breast cancer patients for 18 months.[5] The disease in these patients had spread to the axillary lymph nodes, and an unreported number had distant metastases. The patients received antioxidantsupplementation (vitamin C, vitamin E, and beta carotene), other vitamins and trace minerals, essentialfatty acids, and coenzyme Q10 (at a dose of 90 mg /day), in addition to standard therapy (surgery,radiation therapy, and chemotherapy, with or without tamoxifen). The patients were seen every 3 months to monitor disease status (progressive disease or recurrence), and, if there was a suspicion of recurrence,mammographybone scanx-ray, or biopsy was performed. The survival rate for the study period was 100% (4 deaths were expected). Six patients were reported to show some evidence of remission; however, incomplete clinical data were provided, and information suggestive of remission was presented for only 3 of the 6 patients. None of the 6 patients had evidence of further metastases. For all 32 patients, decreased use of painkillers, improved quality of life, and an absence of weight loss were reported. Whether painkiller use and quality of life were measured objectively (e.g., from pharmacy records and validated questionnaires, respectively) or subjectively (from patient self-reports) was not specified.In a follow-up study, 1 of the 6 patients with a reported remission and a new patient were treated for several months with higher doses of coenzyme Q10 (390 and 300 mg/day, respectively).[6] Surgical removal of the primary breast tumor in both patients had been incomplete. After 3 to 4 months of high-level coenzyme Q10 supplementation, both patients appeared to experience complete regression of theirresidual breast tumors (assessed by clinical examination and mammography). It should be noted that a different patient identifier was used in the follow-up study for the patient who had participated in the original study. Therefore, it is impossible to determine which of the 6 patients with a reported remission took part in the follow-up study. In the follow-up study report, the researchers noted that all 32 patients from the original study remained alive at 24 months of observation, whereas 6 deaths had been expected.[6]In another report by the same investigators, 3 breast cancer patients were followed for a total of 3 to 5 years on high-dose coenzyme Q10 (390 mg/day).[7] One patient had complete remission of liver metastases (determined by clinical examination and ultrasonography), another had remission of a tumor that had spread to the chest wall (determined by clinical examination and chest x-ray), and the third patient had no microscopic evidence of remaining tumor after a mastectomy (determined by biopsy of the tumor bed).All 3 of the above-mentioned human studies [5-7] had important design flaws that could have influenced their outcome. Study weaknesses include the absence of a control group (i.e., all patients received coenzyme Q10), possible selection bias in the follow-up investigations, and multiple confounding variables (i.e., the patients received a variety of supplements in addition to coenzyme Q10, and they received standard therapy either during or immediately before supplementation with coenzyme Q10). Thus, it is impossible to determine whether any of the beneficial results was directly related to coenzyme Q10 therapy.Anecdotal reports of coenzyme Q10 lengthening the survival of patients with pancreaticlungrectal,laryngealcolon, and prostate cancers also exist in the peer-reviewed, scientific literature.[4] The patients described in these reports also received therapies other than coenzyme Q10, including chemotherapy, radiation therapy, and surgery.Refer to the NCI Web site for a list of active clinical trials evaluating the use of coenzyme Q10 in cancer patients.ReferencesIarussi D, Auricchio U, Agretto A, et al.: Protective effect of coenzyme Q10 on anthracyclines cardiotoxicity: control study in children with acute lymphoblastic leukemia and non-Hodgkin lymphoma. Mol Aspects Med 15 (Suppl): s207-12, 1994.  [PUBMED Abstract]
    Folkers K, Wolaniuk A: Research on coenzyme Q10 in clinical medicine and in immunomodulation. Drugs Exp Clin Res 11 (8): 539-45, 1985.  [PUBMED Abstract]
    Cortes EP, Gupta M, Chou C, et al.: Adriamycin cardiotoxicity: early detection by systolic time interval and possible prevention by coenzyme Q10. Cancer Treat Rep 62 (6): 887-91, 1978. [PUBMED Abstract]
    Folkers K, Brown R, Judy WV, et al.: Survival of cancer patients on therapy with coenzyme Q10. Biochem Biophys Res Commun 192 (1): 241-5, 1993.  [PUBMED Abstract]
    Lockwood K, Moesgaard S, Hanioka T, et al.: Apparent partial remission of breast cancer in 'high risk' patients supplemented with nutritional antioxidants, essential fatty acids and coenzyme Q10. Mol Aspects Med 15 (Suppl): s231-40, 1994.  [PUBMED Abstract]
    Lockwood K, Moesgaard S, Folkers K: Partial and complete regression of breast cancer in patients in relation to dosage of coenzyme Q10. Biochem Biophys Res Commun 199 (3): 1504-8, 1994. [PUBMED Abstract]
    Lockwood K, Moesgaard S, Yamamoto T, et al.: Progress on therapy of breast cancer with vitamin Q10 and the regression of metastases. Biochem Biophys Res Commun 212 (1): 172-7, 1995. [PUBMED Abstract]
    Complementary treatments highlighted at recent meeting. Oncology (Huntingt) 13 (2): 166, 1999. [PUBMED Abstract]
    Folkers K: Relevance of the biosynthesis of coenzyme Q10 and of the four bases of DNA as a rationale for the molecular causes of cancer and a therapy. Biochem Biophys Res Commun 224 (2): 358-61, 1996.  [PUBMED Abstract]
    Ren S, Lien EJ: Natural products and their derivatives as cancer chemopreventive agents. Prog Drug Res 48: 147-71, 1997.  [PUBMED Abstract]
    Hodges S, Hertz N, Lockwood K, et al.: CoQ10: could it have a role in cancer management? Biofactors 9 (2-4): 365-70, 1999.  [PUBMED Abstract]
    Usui T, Ishikura H, Izumi Y, et al.: Possible prevention from the progression of cardiotoxicity in adriamycin-treated rabbits by coenzyme Q10. Toxicol Lett 12 (1): 75-82, 1982.  [PUBMED Abstract]
    Iwamoto Y, Hansen IL, Porter TH, et al.: Inhibition of coenzyme Q10-enzymes, succinoxidase and NADH-oxidase, by adriamycin and other quinones having antitumor activity. Biochem Biophys Res Commun 58 (3): 633-8, 1974.  [PUBMED Abstract]
    Folkers K: The potential of coenzyme Q 10 (NSC-140865) in cancer treatment. Cancer Chemother Rep 2 4 (4): 19-22, 1974.  [PUBMED Abstract]
    Folkers K, Osterborg A, Nylander M, et al.: Activities of vitamin Q10 in animal models and a serious deficiency in patients with cancer. Biochem Biophys Res Commun 234 (2): 296-9, 1997.  [PUBMED Abstract]
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  • GramE
    GramE Member Posts: 5,056
    edited May 2009

    I had Dose dense A/C, which can be hard on the heart, followed by 12 weekly paclitaxol and herceptin.  My ejection fraction remained the same.   Now I get Herceptin every 3 weeks and just had a MUGA and it still remains the same.  I was told if it drops below 50, herceptin is stopped and any damage usually reverses and treatment can continue at a later date.   Sorry I don't have any reports or more factual info.

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