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    Cmurphy asked a questionEsophagus (Esophageal) Cancer

    Anyone have experience in a trial with MM121and Cetuximab (Erbitux)?

    • psue's Avatar
      psue

      I am taking irinotican and erbitux weekly. I only can tell you the erbitux has a uncomfortable rash, mild nausea, and the up side is that one is only a one hour infusion every week.

      over 4 years ago
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    Cmurphy wrote on Nora's wall

    While you are googling, check out articles on esophageal cancer and black raspberries, especially studies at Ohio State. You can get the powder and I did. Bob just gave up on food supplements. Also Dr. Abrams suggested Larabars for a sweet tooth- just not the ones that add chocolate. Date based bars. Could help to add calories to your husband's diet. Best of luck.

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    • Nora's Avatar
      Nora

      Yes, I have already researched black raspberries, thinking on getting liquid
      Form extract. Instead of powder. Black raspberries extract targets esophageal cancer cells specifically..
      Thanks

      over 4 years ago
    • Cmurphy's Avatar
      Cmurphy

      Great. Let me know if you get the liquid form and where you got it- and if its palatable, please. Bob found the powder inconvenient and quit using it. Could get it down only in tea form or on oatmeal, neither of which he is inclined to use regularly. Not sure if it makes a difference to metastasized locations. It never came back in the esophagus.

      over 4 years ago
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    Cmurphy wrote on Nora's wall

    My husband and I have never been sorry that he chose not to have surgery. He has squamous Esopageal carcinoma and received radiation and chemo which appeared to have eradicated all cancer. The question then was whether to try for a cure with surgery. The original tumor was very high in his throat and a local surgeon would not touch it. A renowned surgeon at UCSF, however, agreed to do it. The radiologist was vehemently opposed saying a third of all surgeries showed no cancer in the excised tissues after radiation and saying that it would be difficult to get enough tissue from the stomach to reconstruct the esophagus. Additionally, his vocal chords would be removed. The UCSF tumor board also recommended against the surgery. The decision was ours not to proceed. It was the right call as although the cancer has never returned to the esophagus, it had gotten into the lymph system and ultimately spread from there. So, the surgery would not have prevented the metasteses process that had already begun. He has been able to eat normally for two years and speak, a huge benefit to his quality of life. He has maintained a healthy weight and surprisingly good muscle tone despite the various chemo regimens. As for alternate diets, we were lucky enough to see Dr. Donald Abrams at UCSF, who wrote the book "Integrative Oncology" with Andrew Weil, MD. He was very much in favor of eating things that would support the immune system to fight off cancer. Lovely man. Advised Bob to eat only organic, no red meat except wild game, no dairy and the biggest admonition was NO sugar. That meant looking in all product lists to make sure no sugar as an ingredient even. Hard to find bread or soups etc without sugar. Whole Foods became my best friend. He also recommended a turmeric product with black pepper and mushroom capsules and black raspberry powder. We did this religiously for about four months but when he got yet another bad scan, he said he was going to eat what he wanted and has. But, I think the advice was good and you may be interested in following up with Dr. Abrams or other integrative oncologists. Good luck!

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    • Nora's Avatar
      Nora

      Hi CMurphy, thank you for your quick response. We are also doing pretty much everything you mentioned, as far as integrative natural oncology. No red meets, no sugar, all organic, etc, etc.. My dad continues to take turmeric pills 1000 mg of turmeric and 300 mg of garlic in each pill. He takes about 4-5 pills a day. It detoxes liver, lowers blood pressure, and stops cancer cells from spreading or metasticing. And he also was taken Graviola which is 10,000 times better than chemo, until I recently found Paw Paw after an extensive research i did on alternatives to chemo and it actually kills cells resistant to chemo. and is also i is supposed to be a million times better than chemo. You might want to look into it. Google is my best friend. :). I strongly believed that with everything we are doing we have kept his cancer contained and reversed it. Since he had two small tumors in distant lymth nodes that were negative after byopsy done. Keep in mind that we took a proactive approach and started doing all the natural stuff way before he started chemo and radiation. He still had two speckles in his lungs after natural treatment so we wonder how bad his lungs were. But seems that chemo took care of that. He is done with treatment but pet scan still shows some mild activity in his esophagous so started him with turmeric again and Paw Paw this time instead of Graviola. This is the second day on paw paw 4 pills a day and he says the pain is not as bad anymore. So hopefully this will work. And not get surgery. I hate cancer I which it didn't exist. Too much suffering for all the families going through it. I am so sorry you are going through this too. If you have any questions feel free to ask and if there is any I can help you with I am at your orders. Good luck and prayers with your husband's chemo trial, I hope It works this time. Keep us posted. Thanks again!!

      over 4 years ago
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    Cmurphy shared an experience

    Decision Point: While the carbo/taxol knocked the cancer way back from September 2012 to November 2012, the cancer found a work around and was spreading quickly by February 2013. Bob has decided to begin a trial at UCSF of MM121, Cetuximab and irinotecan. He still is engaged in life and feels particularly well as one must stop all other chemos for a coupe of weeks to begin the new regimen. We are waiting for the dates so we can plan our trips to Arizona and, later, Minnesota around treatments. It is going to wreak havoc to the March trip to the desert. We remain hopeful, as always. We have remained more correct than the various prognoses given at different times.

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    Cmurphy shared an experience

    Decision Point: By September 2011, no one was offering a cure so Bob opted for a standard chemo regimen of carbo/taxol every three weeks to facilitate traveling. We arranged for treatment by oncologist in Palm Desert as well. We were freed from weekly trips to SF.

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