Neuroendocrine Tumors/Afinitor

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Neuroendocrine Tumors/Afinitor

by Maria_Ildonete on Thu Jan 26, 2012 01:37 AM

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I am a person with a rare type of cancer called Neuroendocrine tumors, and or GLUCAGONOMA. I have had different types of treatments, that have being very succesful. At first I had a surgery to remove a tumor from the tail of my pancreas. Few years later, the tumors came back metastassed to the liver, and some lymph nodes. I found a doctor at MD Anderson, Houston, Texas. I was put on 21 month of chemo to shrink the tumors. Again it was succesful. I found out that Steve Jobs, had the exactly same type of cancer. He had liver transplant, and lived few month after that. My tumors came back, few month ago. I am now taking AFINITOR/EVEROLIMUS, and again, the tumors are shrinking. I few that when we have such a success on our treatment, we should share. I feel blessed, and hope God blesses everyone tat are fighting with any type of cancer.

Maria

RE: Neuroendocrine Tumors/Afinitor

by Here2Love on Sat Jan 28, 2012 07:59 PM

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On Jan 26, 2012 1:37 AM Maria_Ildonete wrote:

I am a person with a rare type of cancer called Neuroendocrine tumors, and or GLUCAGONOMA. I have had different types of treatments, that have being very succesful. At first I had a surgery to remove a tumor from the tail of my pancreas. Few years later, the tumors came back metastassed to the liver, and some lymph nodes. I found a doctor at MD Anderson, Houston, Texas. I was put on 21 month of chemo to shrink the tumors. Again it was succesful. I found out that Steve Jobs, had the exactly same type of cancer. He had liver transplant, and lived few month after that. My tumors came back, few month ago. I am now taking AFINITOR/EVEROLIMUS, and again, the tumors are shrinking. I few that when we have such a success on our treatment, we should share. I feel blessed, and hope God blesses everyone tat are fighting with any type of cancer.

Maria

I also have  Pancreatic Neuroendocrine Tumor, though mine has been classified as nonsecreting.    I had my first surgery in 1998 removing the tail of the pancreas.  Recurrent tumor on head of pancreas in 2004 was treated with CyberKnife radiation. More surgery was not an option, so that's why CyberKnife was tried.  It stunned the tumor enough to keep it from growing until 2009.  I am now on monthly Octreotide injections, and it appears that the Octreotide has shrunk the tumor slightly.   My oncologist and gastroenterologist has considered trying Afinitor, but think I am doing the best possible right now. I do have to puree my food to prevent digestive tract obstructions.  I have a blog of my recipes at

www.pureedpzazz.blogspot.com  

I agree that it is good to share positive outcomes!

RE: Neuroendocrine Tumors/Afinitor

by lolis33 on Sat Jan 28, 2012 09:58 PM

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On Jan 28, 2012 7:59 PM Here2Love wrote:

On Jan 26, 2012 1:37 AM Maria_Ildonete wrote:

I am a person with a rare type of cancer called Neuroendocrine tumors, and or GLUCAGONOMA. I have had different types of treatments, that have being very succesful. At first I had a surgery to remove a tumor from the tail of my pancreas. Few years later, the tumors came back metastassed to the liver, and some lymph nodes. I found a doctor at MD Anderson, Houston, Texas. I was put on 21 month of chemo to shrink the tumors. Again it was succesful. I found out that Steve Jobs, had the exactly same type of cancer. He had liver transplant, and lived few month after that. My tumors came back, few month ago. I am now taking AFINITOR/EVEROLIMUS, and again, the tumors are shrinking. I few that when we have such a success on our treatment, we should share. I feel blessed, and hope God blesses everyone tat are fighting with any type of cancer.

Maria

I also have  Pancreatic Neuroendocrine Tumor, though mine has been classified as nonsecreting.    I had my first surgery in 1998 removing the tail of the pancreas.  Recurrent tumor on head of pancreas in 2004 was treated with CyberKnife radiation. More surgery was not an option, so that's why CyberKnife was tried.  It stunned the tumor enough to keep it from growing until 2009.  I am now on monthly Octreotide injections, and it appears that the Octreotide has shrunk the tumor slightly.   My oncologist and gastroenterologist has considered trying Afinitor, but think I am doing the best possible right now. I do have to puree my food to prevent digestive tract obstructions.  I have a blog of my recipes at

www.pureedpzazz.blogspot.com "" target="_blank" rel="nofollow">http://www.pureedpzazz.blogspot.com " target="_blank" rel="nofollow">www.pureedpzazz.blogspot.com  

I agree that it is good to share positive outcomes!

Oh my Here2Love!  Do your recipes look sumptious or what?!?!

My vegan daughters will go crazy scribbling these down and later hear them bustling in the kitchen making it up. That RootyFruitySoup looks almost dessert like...can't wait to try some of these!  Pureed looks awesome to me on any plate (bowl).  

I wish you all the best with the Octreotide and that the tumor shrinks even more in this new year.

Have a great weekend!

RE: Neuroendocrine Tumors/Afinitor

by veggienft on Sun Jan 29, 2012 03:08 PM

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On Jan 26, 2012 1:37 AM Maria_Ildonete wrote:

I am a person with a rare type of cancer called Neuroendocrine tumors, and or GLUCAGONOMA. I have had different types of treatments, that have being very succesful. At first I had a surgery to remove a tumor from the tail of my pancreas. Few years later, the tumors came back metastassed to the liver, and some lymph nodes. I found a doctor at MD Anderson, Houston, Texas. I was put on 21 month of chemo to shrink the tumors. Again it was succesful. I found out that Steve Jobs, had the exactly same type of cancer. He had liver transplant, and lived few month after that. My tumors came back, few month ago. I am now taking AFINITOR/EVEROLIMUS, and again, the tumors are shrinking. I few that when we have such a success on our treatment, we should share. I feel blessed, and hope God blesses everyone tat are fighting with any type of cancer.

Maria

Afinitor (Everolimus) inhibits mTOR. mTOR is a scavenging protein which cells use to detect the presence of free glutamine as a food source. Insulin resistant cells can use glutamine to create cancer. When cells have no mTOR, they can't know about the presence of free glutamine, and can't use it to make cancer.

Glutamine is normally not free. It is bound into the extracellular matrix (ECM) by tissue transglutaminase. Glutamine becomes free when, first plant proteins, then immune antibodies, attack and remove tissue transglutaminase. Remove the operative food proteins from your diet, and it will have the same effect as Afinitor.

By the way, these food proteins come mostly from plant carbohydrates. Eliminating these proteins also aids in making cells sensitive to insulin, resolving their need to search for glutamine.

Start by eliminating wheat and sugar.

RE: Neuroendocrine Tumors/Afinitor

by TanyaKircher on Sat Dec 01, 2012 07:35 PM

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On Jan 26, 2012 1:37 AM Maria_Ildonete wrote:

I am a person with a rare type of cancer called Neuroendocrine tumors, and or GLUCAGONOMA. I have had different types of treatments, that have being very succesful. At first I had a surgery to remove a tumor from the tail of my pancreas. Few years later, the tumors came back metastassed to the liver, and some lymph nodes. I found a doctor at MD Anderson, Houston, Texas. I was put on 21 month of chemo to shrink the tumors. Again it was succesful. I found out that Steve Jobs, had the exactly same type of cancer. He had liver transplant, and lived few month after that. My tumors came back, few month ago. I am now taking AFINITOR/EVEROLIMUS, and again, the tumors are shrinking. I few that when we have such a success on our treatment, we should share. I feel blessed, and hope God blesses everyone tat are fighting with any type of cancer.

Maria

My father was recently diagonosed with the same thing.... Neuroendocrine Tumors and Glucagonoma.... how has the Afinitor been working for you??  Any suggestions??

RE: Neuroendocrine Tumors/Afinitor

by dyieing on Fri Dec 07, 2012 07:27 PM

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Maria,  I too have the same  cancer as you,but after the surgery I still have diarrhoea  and pain after eating,  I take lomotil  after each loose stool  and pain meds,  go back to bed after breakfast, with the heating pad .Now i have a lump under the arm,Anyone can help the pain and diarrohea is bad and the doctor does not help.    Please anyone out there help,  I have lost 15 pounds and I am tired, trying not to give up,  thank you all.  Lee,

RE: Neuroendocrine Tumors/Afinitor

by Maria_Ildonete on Sat Dec 08, 2012 12:26 AM

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I am sorry you have a cancer, specialy this one, which is sooooo stuborn. I am not sure if your doctor mention a shot called Sandostatin Lar. This shot was at first aproved for diareha, but for me it works the opposit way. I was very constipated, and since I started on this shot, I became very regular, and simptomless from the cancer. It is very expensivel, but for me worth while. I started with a very small dosage, then kept going up. I am on 30mg every 28 days, now. I have been on it since December 2005.

Good luck, and May God Bless You!

Maria

RE: Neuroendocrine Tumors/Afinitor

by Maria_Ildonete on Sat Dec 08, 2012 12:37 AM

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Hi,

Iam sorry, your Dad got this type of cancer. Did he have any surgery yet? Or any type of treatment? I am doing fine with the AFINITOR. I am on 10 mg, and no bad side afect. But I correspond with another person, who started with 10mg, and had bad side afect, so he is taking only half of the recomended dosage. 5mg. The tumors shank a little at the begining, but now they are stabelized. I hope, I answer your question. If not, please feel free to write again.

May God bless you and your Dad,

Maria I. Graf

RE: Neuroendocrine Tumors/Afinitor

by Maria_Ildonete on Sat Dec 08, 2012 12:54 AM

Quote | Reply

Good luck with the Octreotide injections! This is another name for Sandostatin Lar. My tumors do not shrink with it, but it takes away the synthoms. The only way the tumors shrank was with chemo. Now the AFINITOR, is keeping them stabelized.

May God bless you!

Maria I. Graf

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