Benign carcinoid tumor in bronchi tube

@californiazebra How do I find a doctor who specifically specializes in Carcinoid tumors? My surgeon has not once referred to them as "NETS." Do darn frustrating. I HAVE to get back to work.

@jessie1990 You are truly blessed!! I've thought of getting another cat, but I take owning one very seriously, and if anything goes wrong, there is no one who would take my place.
I love my son's dog, but he just found out SHE has cancer $10,000 worth of tests later. As long as she seems not to be in pain, he is going to help her keep going. I'm staying out of the process. It's his beloved dog. I know he will do the right thing when the time comes. But animals are SO important.

@californiazebra How do I find a doctor who specifically specializes in Carcinoid tumors? My surgeon has not once referred to them as "NETS." Do darn frustrating. I HAVE to get back to work.

@jessie1990 Jessie, I just watched a YouTube video of a lady who had/has pancreatic NETS.
She has gotten through much of the emotional part by going back to exercise. She loved swimming in the past, so she joined a group who swims in the ocean in Hawaii. One day a life guard of 30 some years approached her to ask if she had cancer. He asked, because as she was in the ocean she had been surrounded by a large group of dolphins. He said in all his years he had never seen anything like it. How amazing is that?

@nannybb
I had a 10 year old schnauzer who wanted a tummy rub every morning. One day I felt a huge lump. She had very aggressive mammary cancer. A great vet removed the lump hoping it hadn’t spread. My sweet girl lived to be 16 without any other cancer issues. Yay!

I also had a 12 year old schnauzer who got rare salivary cancer. The treatment plan had awful side effects and I wouldn’t even do that to myself so I declined the treatment and he just stayed on cortisone pills that kept him happy and running around like a puppy 4 more months until one day he just shut during a walk, I carried him home and knew it was over. Put him down the next morning. They both lived happy lives! I had rescued them together. Fun breed! Talk about bold! Personality plus! I love dogs and all animals.

@californiazebra @nannybb @jessie1990

This is my guy Bigfoot. He keeps me moving whether I want to or not. We just got back from our soul soothing walk a little while ago. He helps my sanity.

@nannybb @jessie1990

A fellow pancreatic cancer patient asked a while back what it was like having pancreatic cancer, how does someone deal with the side effects of chemo, and how does someone live with it? This was my response. I hope there is something in there that might help.

It really, really, really, really sux. Welcome to your new "normal". For me, I had to acknowledge that, but I sure as heck wasn't going to accept it. I was diagnosed with a PNET that spread primarily to my liver and some other places in 8/22. I had lost over 100lbs and had been progressively getting sicker for years. My Mayo team only presented CAPTEM as a solution. I had to deal with ascites and cachexia first, I still don't know how to pronounce them, prior to starting chemo. A few weeks later, I started my first cycle on 9/1/22. I learned a new version of sick. I know your side effects, and a few others, quite well. I had to change my mindset to survive and hopefully thrive at life again. I focused on the following:

1. Separate myself from the disease. It isn't personal. Study it. Learn about it. Pretend someone else has it. It was easier for me to be objective with my cancer and my treatment, all of the good and bad, if it wasn't about me. It was about someone else. I wanted to become that person's best cheerleader, but I couldn't do that without learning about NETs. I ultimately became my own best cheerleader and advocate.

2. Make each second the best that I can. If I can string some good seconds together, I might be able to make a few good minutes possible. Next, try to string a few minutes together. Then, shoot for a few hours with the idea that hours become days. Days become weeks. Weeks become months and so on and so on. The idea of making good seconds really helped me focus on the moment.

3. Find a way to cope. Emotionally, it is ok to be a mess. Cancer is terrifying. The first few times I cried, my wife asked me what was wrong. I told her I was scared. She asked what she could do to help. I responded that I didn't know. That was an honest answer. I then cried alone a lot. I didn't want to her, or other loved ones who want to "fix" me, to worry. Crying really helped. It allowed me to get out all of the negative energy, so I could let the positive energy in.

4. Help others. No matter how bad I have it, someone always has it worse. Go read to kids in the cancer ward of a hospital. That impact will be profound. I was diagnosed at 56. I got to live 56 years before learning that I had cancer. For some of theses kids, cancer is all they know. ALL THEY KNOW!!! Imagine their pain and fear. I am supposed to be an adult, and I can't handle it. How can they be so strong and calm, when I am a terrified blubbering mess? I found great strength in that. If they can do it, so can I. I made the choice to be like them.

Acknowledge my plight, but I am not going to accept it. Make each second the best that I can even if it sux. Be human. Laugh, cry, and feel every emotion in between. It is ok. And be thankful for what you have. Others have it worse.

After 13 cycles of CAPTEM, my tumors shrunk. My pancreas and liver now functioned. I have been on continuous maintenance capecitabine since. My PET scans on 11/27/24 came back with no growth. Everything is still stable. I feel very lucky, but I worked very hard for that luck. I also have had lots and lots of help. I wouldn't be alive without it. Thank you to everyone that has helped me save my life.

@californiazebra @nannybb @jessie1990

This is my guy Bigfoot. He keeps me moving whether I want to or not. We just got back from our soul soothing walk a little while ago. He helps my sanity.

@nannybb @jessie1990

A fellow pancreatic cancer patient asked a while back what it was like having pancreatic cancer, how does someone deal with the side effects of chemo, and how does someone live with it? This was my response. I hope there is something in there that might help.

It really, really, really, really sux. Welcome to your new "normal". For me, I had to acknowledge that, but I sure as heck wasn't going to accept it. I was diagnosed with a PNET that spread primarily to my liver and some other places in 8/22. I had lost over 100lbs and had been progressively getting sicker for years. My Mayo team only presented CAPTEM as a solution. I had to deal with ascites and cachexia first, I still don't know how to pronounce them, prior to starting chemo. A few weeks later, I started my first cycle on 9/1/22. I learned a new version of sick. I know your side effects, and a few others, quite well. I had to change my mindset to survive and hopefully thrive at life again. I focused on the following:

1. Separate myself from the disease. It isn't personal. Study it. Learn about it. Pretend someone else has it. It was easier for me to be objective with my cancer and my treatment, all of the good and bad, if it wasn't about me. It was about someone else. I wanted to become that person's best cheerleader, but I couldn't do that without learning about NETs. I ultimately became my own best cheerleader and advocate.

2. Make each second the best that I can. If I can string some good seconds together, I might be able to make a few good minutes possible. Next, try to string a few minutes together. Then, shoot for a few hours with the idea that hours become days. Days become weeks. Weeks become months and so on and so on. The idea of making good seconds really helped me focus on the moment.

3. Find a way to cope. Emotionally, it is ok to be a mess. Cancer is terrifying. The first few times I cried, my wife asked me what was wrong. I told her I was scared. She asked what she could do to help. I responded that I didn't know. That was an honest answer. I then cried alone a lot. I didn't want to her, or other loved ones who want to "fix" me, to worry. Crying really helped. It allowed me to get out all of the negative energy, so I could let the positive energy in.

4. Help others. No matter how bad I have it, someone always has it worse. Go read to kids in the cancer ward of a hospital. That impact will be profound. I was diagnosed at 56. I got to live 56 years before learning that I had cancer. For some of theses kids, cancer is all they know. ALL THEY KNOW!!! Imagine their pain and fear. I am supposed to be an adult, and I can't handle it. How can they be so strong and calm, when I am a terrified blubbering mess? I found great strength in that. If they can do it, so can I. I made the choice to be like them.

Acknowledge my plight, but I am not going to accept it. Make each second the best that I can even if it sux. Be human. Laugh, cry, and feel every emotion in between. It is ok. And be thankful for what you have. Others have it worse.

After 13 cycles of CAPTEM, my tumors shrunk. My pancreas and liver now functioned. I have been on continuous maintenance capecitabine since. My PET scans on 11/27/24 came back with no growth. Everything is still stable. I feel very lucky, but I worked very hard for that luck. I also have had lots and lots of help. I wouldn't be alive without it. Thank you to everyone that has helped me save my life.

@nannybb @jessie1990

A fellow pancreatic cancer patient asked a while back what it was like having pancreatic cancer, how does someone deal with the side effects of chemo, and how does someone live with it? This was my response. I hope there is something in there that might help.

It really, really, really, really sux. Welcome to your new "normal". For me, I had to acknowledge that, but I sure as heck wasn't going to accept it. I was diagnosed with a PNET that spread primarily to my liver and some other places in 8/22. I had lost over 100lbs and had been progressively getting sicker for years. My Mayo team only presented CAPTEM as a solution. I had to deal with ascites and cachexia first, I still don't know how to pronounce them, prior to starting chemo. A few weeks later, I started my first cycle on 9/1/22. I learned a new version of sick. I know your side effects, and a few others, quite well. I had to change my mindset to survive and hopefully thrive at life again. I focused on the following:

1. Separate myself from the disease. It isn't personal. Study it. Learn about it. Pretend someone else has it. It was easier for me to be objective with my cancer and my treatment, all of the good and bad, if it wasn't about me. It was about someone else. I wanted to become that person's best cheerleader, but I couldn't do that without learning about NETs. I ultimately became my own best cheerleader and advocate.

2. Make each second the best that I can. If I can string some good seconds together, I might be able to make a few good minutes possible. Next, try to string a few minutes together. Then, shoot for a few hours with the idea that hours become days. Days become weeks. Weeks become months and so on and so on. The idea of making good seconds really helped me focus on the moment.

3. Find a way to cope. Emotionally, it is ok to be a mess. Cancer is terrifying. The first few times I cried, my wife asked me what was wrong. I told her I was scared. She asked what she could do to help. I responded that I didn't know. That was an honest answer. I then cried alone a lot. I didn't want to her, or other loved ones who want to "fix" me, to worry. Crying really helped. It allowed me to get out all of the negative energy, so I could let the positive energy in.

4. Help others. No matter how bad I have it, someone always has it worse. Go read to kids in the cancer ward of a hospital. That impact will be profound. I was diagnosed at 56. I got to live 56 years before learning that I had cancer. For some of theses kids, cancer is all they know. ALL THEY KNOW!!! Imagine their pain and fear. I am supposed to be an adult, and I can't handle it. How can they be so strong and calm, when I am a terrified blubbering mess? I found great strength in that. If they can do it, so can I. I made the choice to be like them.

Acknowledge my plight, but I am not going to accept it. Make each second the best that I can even if it sux. Be human. Laugh, cry, and feel every emotion in between. It is ok. And be thankful for what you have. Others have it worse.

After 13 cycles of CAPTEM, my tumors shrunk. My pancreas and liver now functioned. I have been on continuous maintenance capecitabine since. My PET scans on 11/27/24 came back with no growth. Everything is still stable. I feel very lucky, but I worked very hard for that luck. I also have had lots and lots of help. I wouldn't be alive without it. Thank you to everyone that has helped me save my life.