My Cancer Fight is On to Plan C and a New Drug

So, it seems that the Xeloda and the Temodar did not work for me. The combination is often called CapTem. Read More. My tumors continued to grow and so my oncologist has taken me off of these medicines and put me on a new drug. This time, as opposed to last time, ALL of my tumors grew. Last time it was only the tumors in my liver. I’m ready to get radical with this. My oncologist has told me that if my tumors continue to grow at this speed that I only have 2 years to live. I know things can change and I know that it’s hard to be accurate when it comes to life expectancy but he was being honest with me and giving me a number that he felt was as accurate as he could be. So, what now?

My Cancer Fight is On to Plan C and a New Drug

I am now on Affinitor which is the generic name for Everolimus. It has been proven effective in slowing the growth of pancreatic carcinoid tumors. I haven’t found any evidence that it works for other types of carcinoid cancers. I hope he is not taking a shot in the dark. I will ask about this at my next appointment. Here’s a quote which is why I am questioning this choice.

Everolimus, an oral inhibitor of the mammalian target of rapamycin (mTOR) that is involved in the development of neuroendocrine tumors, was shown in phase II studies to prolong PFS in patients with neuroendocrine tumors of pancreatic origin.

However, its use in tumors originating in other sites, such as the lung or small intestine, or in conjunction with a somatostatin analog has not thus far been evaluated.  Read More


Here are some of the side effects.

Lung or Breathing Problems: In some patients, lung or breathing problems may be severe and can even lead to death. Patients should tell their health care provider right away if they have any of these symptoms: new or worsening cough, shortness of breath, chest pain, difficulty breathing, or wheezing.

Infections: AFINITOR may make patients more likely to develop an infection, such as pneumonia, or a bacterial, fungal, or viral infection. Viral infections may include reactivation of hepatitis B in people who have had hepatitis B in the past. In some people, these infections may be severe and can even lead to death. Patients may need to be treated as soon as possible. Patients should tell their health care provider right away if they have a temperature of 100.5°F or above, have chills, or do not feel well. Symptoms of hepatitis B or infection may include the following: fever, chills, skin rash, joint pain and inflammation, tiredness, loss of appetite, nausea, pale stools or dark urine, yellowing of the skin, or pain in the upper right side of the stomach.

Kidney Failure: Patients taking AFINITOR may develop kidney failure. In some people, this may be severe and can even lead to death. Patients should have tests to check their kidney function before and during their treatment with AFINITOR.

Delayed Wound Healing: AFINITOR can cause incisions to heal slowly or not heal well. Call your health care provider right away if your incision is red, warm, or painful; if you have blood, fluid, or pus in your incision; if your incision opens up; or if your incision swells.

Before taking AFINITOR, tell your health care provider about all your medical conditions, including if you:

  • Have or have had kidney problems
  • Have or have had liver problems
  • Have diabetes or high blood sugar
  • Have high blood cholesterol levels
  • Have any infections
  • Previously had hepatitis B
  • Are scheduled to receive any vaccinations. You should not receive a live vaccine or be around people who have recently received a live vaccine during your treatment with AFINITOR. If you are not sure about the type of vaccine, ask your health care provider.
  • Have other medical conditions
  • Are pregnant or could become pregnant. AFINITOR or AFINITOR DISPERZ can cause harm to your unborn baby. You should use effective birth control while using AFINITOR and for 8 weeks after stopping treatment. Talk to your health care provider about birth control options while taking AFINITOR or AFINITOR DISPERZ
  • Are breastfeeding or plan to breastfeed. You and your health care provider should decide if you will take AFINITOR or breastfeed. You should not do both. Read More

How It Works

Previously, the chemotherapy that I was on inhibited the DNA of rapidly growing cells from dividing. The hope was that it would inhibit my tumors from growing by not allowing the tumor cells to divide. Unfortunately, my tumor cells are growing quickly but not fast enough so the chemo was ineffective.

As I understand it, the new drug that I am on is Everolimus (also known as Afinitor) and it works by blocking the chemical pathways that signal the tumor to grow. That pathway is called mTOR ( mammalian target of rapamycin ). Read More Here’s a quote from a great post if you’re interested in understanding more. I have to be honest, I’m struggling with this one!   🙂

Many human tumors occur because of dysregulation of mTOR signaling, and can confer higher susceptibility to inhibitors of mTOR.[16]Deregulations of multiple elements of the mTOR pathway, like PI3K amplification/mutationPTEN loss of function, AKT overexpression, and S6K1, 4EBP1, and eIF4E overexpression have been related to many types of cancers. Therefore, mTOR is an interesting therapeutic target for treating multiple cancers, both the mTOR inhibitors themselves or in combination with inhibitors of other pathways. Read More

It’s Time to Get More Aggressive

I have been working hard to stay on top of any new research, clinical trials and new information regarding my disease but, I feel that I have been hampered in the past by doctors who either did not care or were ignorant regarding carcinoid cancer. I am happy with my current doctor but, he treat multiple types of cancer and I’m starting to think I should try again to find a doctor who is completely devoted to finding a cure for my particular type of cancer alone. So, I am going to speak with my oncologist regarding a good specialist. I hope he is open minded because my last doctor was not. She said she was until I actually went and then she found a way to “off load” me to a satellite office rather than see me herself. Needless to say, I left that practice.

Wish me luck,
Ed – To find out how to use my images on your blog for free – Click Here





    • Well, I actually have quite a lot of input from fellow carcinoid victims and there is more info online. I just have to do some research and decide who I am most comfortable with. I feel like I need to get more aggressive so, it’s time to go to a “carcinoid center”. Problem is….none of them are close.

  1. Have you researched or talked to your doctor(s) about Metformin? It seems that one of Metformin’s mechanism of action is also in the inhibition of the mTOR signalling (

  2. Pingback: Mouth Sores From Chemo |

  3. I just found your page. My husband is a stage 4 pancreatic to the liver neuroendocrine tumor fighter. Three long years fighting. From tailectomy of pancrease, spleen and gallbladder removal and partial lobe of liver removed. We have run the race. We also have had ablation on surface tumors on the liver as well as 90spheres placed in the arteries feeding the tumors on the liver. The last thing we had was over 2 months ago. it was the with Afinitor. We did not have great results there so they told us to seek clinical trials. That is where we lost 2 mos. putting in for and getting rejected for one reason or another. So we beat down our oncology dept. door saying OK NOW WHAT? He will start the TEM/CAP regiment this week. I pray for better results than we had with AFINITOR.

    I also pray that you and yours are better as well.

          • I am glad you posted that for me. I didnt see the states had anything. WOO HOO. I AM ON A ROLLER COASTER OF HOPE AGAIN. THANKS ED!

          • I keep forgetting to let you know that you and yours are on my prayer list. KEEP ON FIGHTING! My husband just turned 49 last month. I know it’s hard for those fighting, but I am so thankful for their will to endure and continue to fight. Even through set backs . We are with you. Continue to be strong. There is an answer out there some where. We just have to find it.

          • Thank you so much! I pray off of my Facebook groups! I am 51….8 year old son….and my wife Lisa. 🙂
            I have a bible verse for you! 😀 Blessed be the Lord my God, who teacheth my hands to fight, and my fingers to war. Psalm 144:1
            I feel that God has given this verse to me…maybe it will inspire you! 😀

          • My husband Q just turned 49 in july me, i will be 50 in Dec.. He has 5 kids youngest just turned 21. Been with him for 18 years. Married for 16 years come this November. thank you for the verse . I will tell him . By the way pleasure to meet you.

      • Wow. Makes me rethink what we should do. JIM M. story on that PPRT.ORG site makes me wonder if we should look into treatment at the place in Germany. The cost are around $ 12,000. We dont have $1,200 dollars let a lone that amount. I already wiped out all 401ks and any retirement i had paying the past three years of surgeries and treatments. So I was happy at first when I saw there was hope, but now I am just depressed knowing $ is what choses life or death.

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