Anyone out there with Neuroendocrine Cancer?

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RE: Anyone out there with Neuroendocrine Cancer?

by WPSJR on Tue Apr 30, 2019 04:14 AM

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On Nov 18, 2018 3:20 AM WPSJR wrote:

Hello everyone and I pray for all you.  I just came across this thread in despirate need of answers to the cancer my father has been diagnosed with.  He has "poorly differentiated neuroendocrine tumors" and is in stage 4.  He noticed a growth in his abdomen 3 months ago and went in to the doctor who ran blood test and such, but they didn't seem to be proactive.  Well shortly after his growth tripled in size and others popped up, one in his stomach and two on his backside.  Went to a surgeon to see if they could be removed after doing scans all over his body and no.  He then sent my dad to an Oncologist who diagnosed him and got him on chemo real quick.  Had his first round of chemo last week which consisted of "carboplatin" and "etoposide".  He had three treatments Mon-Wed, and is scheduled for further rounds every third week, Mon-Wed.  He says he feels the size of the tumors have shrunk a little which is good but he is at stage 4, and the Oncologist said that he will need to get his affairs in order because its terminal.  He said treatable but not cureable.  Today I cried so much realizing I was in denial thinking that my dad is strong and will beat this, but he is getting weak and my mother is breaking down.  

What is the likely hood he will get through this and live a normal life.  I've read good stories and bad stories, and it's all just making me numb.  He is 62.  Please if anyone could help please let me know and thank you.

 God bless you all

Just giving an update to how my father is doing and wondering if anyone else is expereinceing the same.

Well he has had several rounds of chemo, and they did radiology that did not seem to help.  He is now going to go back for another round of chemo 3 days straight. 

Each day that goes by I can see him deterateing.  His energy is real low and sleeps a lot.  He is also in the bathroom a lot too.  The doctor said he only has months, he was diagnosed on Now 1, 2018.

I cant cope with this, I have to hide my sadness and I lost a job which was much needed because when he is gone I will have to take care of my mother. 

I am searching for hope but I dont see it anymore.  It's not fair.  Please if anyone could just pray for my dad, as I will pray for all of you.

RE: Anyone out there with Neuroendocrine Cancer?

by PD_NEC on Thu May 02, 2019 05:39 PM

Quote | Reply

On Apr 30, 2019 4:14 AM WPSJR wrote:

On Nov 18, 2018 3:20 AM WPSJR wrote:

Hello everyone and I pray for all you.  I just came across this thread in despirate need of answers to the cancer my father has been diagnosed with.  He has "poorly differentiated neuroendocrine tumors" and is in stage 4.  He noticed a growth in his abdomen 3 months ago and went in to the doctor who ran blood test and such, but they didn't seem to be proactive.  Well shortly after his growth tripled in size and others popped up, one in his stomach and two on his backside.  Went to a surgeon to see if they could be removed after doing scans all over his body and no.  He then sent my dad to an Oncologist who diagnosed him and got him on chemo real quick.  Had his first round of chemo last week which consisted of "carboplatin" and "etoposide".  He had three treatments Mon-Wed, and is scheduled for further rounds every third week, Mon-Wed.  He says he feels the size of the tumors have shrunk a little which is good but he is at stage 4, and the Oncologist said that he will need to get his affairs in order because its terminal.  He said treatable but not cureable.  Today I cried so much realizing I was in denial thinking that my dad is strong and will beat this, but he is getting weak and my mother is breaking down.  

What is the likely hood he will get through this and live a normal life.  I've read good stories and bad stories, and it's all just making me numb.  He is 62.  Please if anyone could help please let me know and thank you.

 God bless you all

Just giving an update to how my father is doing and wondering if anyone else is expereinceing the same.

Well he has had several rounds of chemo, and they did radiology that did not seem to help.  He is now going to go back for another round of chemo 3 days straight. 

Each day that goes by I can see him deterateing.  His energy is real low and sleeps a lot.  He is also in the bathroom a lot too.  The doctor said he only has months, he was diagnosed on Now 1, 2018.

I cant cope with this, I have to hide my sadness and I lost a job which was much needed because when he is gone I will have to take care of my mother. 

I am searching for hope but I dont see it anymore.  It's not fair.  Please if anyone could just pray for my dad, as I will pray for all of you.

Seems like we are in the same boat. Not sure if you have read my earlier posts but my dad has the same cancer. He is deteriorating too. We are at a point now that we cannot give him any more chemo. And now he keeps passing fluid/stool/mucosa on a near constant basis. He cannot walk due to his weakness coupled with chemo induced neuropathy. This is just a nightmare situation and my sister and I are completely overwhelmed and devastated.

londongirl12345 londongirl12345
(Inactive)

RE: Anyone out there with Neuroendocrine Cancer?

by londongirl12345 on Mon Jun 17, 2019 10:38 AM

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On Apr 16, 2019 10:53 PM denver88 wrote:

Why are you pursuing nanoknife,n surgery, etc vs something like lanreotide at this point, has the cancer in liver spread or can't be contained with injections like lanreotide????   

He doesnt respond to the injections. The liver cancer hasn't spread but has grown recently - we just want to see if there is any possibility of clearing the liver entirely through surgery

RE: Anyone out there with Neuroendocrine Cancer?

by WPSJR on Wed Aug 28, 2019 07:37 AM

Quote | Reply

On Nov 18, 2018 3:20 AM WPSJR wrote:

Hello everyone and I pray for all you.  I just came across this thread in despirate need of answers to the cancer my father has been diagnosed with.  He has "poorly differentiated neuroendocrine tumors" and is in stage 4.  He noticed a growth in his abdomen 3 months ago and went in to the doctor who ran blood test and such, but they didn't seem to be proactive.  Well shortly after his growth tripled in size and others popped up, one in his stomach and two on his backside.  Went to a surgeon to see if they could be removed after doing scans all over his body and no.  He then sent my dad to an Oncologist who diagnosed him and got him on chemo real quick.  Had his first round of chemo last week which consisted of "carboplatin" and "etoposide".  He had three treatments Mon-Wed, and is scheduled for further rounds every third week, Mon-Wed.  He says he feels the size of the tumors have shrunk a little which is good but he is at stage 4, and the Oncologist said that he will need to get his affairs in order because its terminal.  He said treatable but not cureable.  Today I cried so much realizing I was in denial thinking that my dad is strong and will beat this, but he is getting weak and my mother is breaking down.  

What is the likely hood he will get through this and live a normal life.  I've read good stories and bad stories, and it's all just making me numb.  He is 62.  Please if anyone could help please let me know and thank you.

 God bless you all

Hello Everyone, I apologize for not getting back sooner but my father has passed away with pancreatic cancer on July 29 at 5:00am. Ok the week of July 4, he began to look yellow meaning jaundice and was getting smaller and weaker. He went for chemo that Monday but didn’t give to him because his vitals were not good, instead they hydrated him. Next day they were going to do a blood diffusion because his cell count was low but they decided against it. The next day they tried for chemo but could only do so much. Then on July 4, we had the day off and watched the fireworks and he seemed ok. However going back to work the next day I get a call after lunch from my mother I need to come to the hospital after work. Dad told me to stay till after work, so I did and that was the longest 4 hours. I get to the hospital and find his room and he looks horrible. My mom and dad said they have something to tell me, but the Dr walked in and I grabbed him to the side and asked what’s happening? He told me my fathers body can’t take chemo anymore and the cancer has spread to his pancreas. I asked has anyone ever recovered from this state and he said no, he said my dad only has about a few months. So I go to the restroom down the hall and just yell and punch the wall over and over crying. I then went into my dad’s room and they told me what I heard. Dad said he wanted home hospice so I made sure that was getting set up so we could get him out of the hospital to a place he want to be. After cleaning and having the hospice staff install a bed, o2 machine, etc. I got him a better mattress and some nice sheets while they were still discharging him. Then on Saturday he was at home and I did everything in my power to make him comfortable, I fed him when he could eat, and gave him his medicines. Things seemed ok for the first week, luckily my grandmother his mom came in to help me and mom. The social workers made me the primary care giver. We talked, prayed and watched tv when we could but then the second week things got worse, wasn’t eating, laying down all the time, I even saw him sit up in bed late at night and was just looking at the floor with his night stand light on. I cried so much. He then turned around and waved at me and laid back down. I had to help him everywhere. The next week he had to be about 80 lbs from 170 when diagnosed. His mind was still sharp but would ramble the first few days, then it was like he couldn’t talk. I stayed next to him and saw that he was just starring out a million miles. He would then start to make these horrible noises of pain that I had to listen for Incase he needed more morphine or if he was chocking on his secretions I would have to give him atopi (spelling?). I didn’t sleep and eat for the whole 3 weeks and lost 40 lbs. but I couldn’t sleep knowing if my dad was in pain or needed anything. So on the morning of July 29, 4:30am Granny and I decided to take a quick nap. Thirty minutes later she comes into my room and says he is no longer breathing. I’ve never seen a man die let alone my loving father. It hurt, it hurt so bad but I couldn’t show it because I had to inform hospice and the funeral home. I then was the solely one planning his service, no one helped me so I was angry about that which kept the lose of my dad out of my head. So after the service on Aug 16, I didn’t feel closure because I was doing everything. I was going to go back to work the following Monday but found my mom outside asking where am I. She is being treated for dementia now and I am having to be her care giver now. I only hope and pray the doctors can slow it. But today I think I finally processed that my father is no longer here. Suddenly a big hole in me developed and then started to have flash backs as he was at his worse. That was today and I am still crying. I loved him so much. And I’m so scarred about my mother. But I am in a deep depression. Cancer is so horrible, I wish this disease on no one. I want to wake up from this nightmare. I hope others out there with this make it, I will pray for you all! The only comfort I have is he’s no longer suffering and he his with the Lord watching over us. I love you Dad!

RE: Anyone out there with Neuroendocrine Cancer?

by WPSJR on Wed Aug 28, 2019 08:06 AM

Quote | Reply

On Aug 28, 2019 7:37 AM WPSJR wrote:

On Nov 18, 2018 3:20 AM WPSJR wrote:

Hello everyone and I pray for all you.  I just came across this thread in despirate need of answers to the cancer my father has been diagnosed with.  He has "poorly differentiated neuroendocrine tumors" and is in stage 4.  He noticed a growth in his abdomen 3 months ago and went in to the doctor who ran blood test and such, but they didn't seem to be proactive.  Well shortly after his growth tripled in size and others popped up, one in his stomach and two on his backside.  Went to a surgeon to see if they could be removed after doing scans all over his body and no.  He then sent my dad to an Oncologist who diagnosed him and got him on chemo real quick.  Had his first round of chemo last week which consisted of "carboplatin" and "etoposide".  He had three treatments Mon-Wed, and is scheduled for further rounds every third week, Mon-Wed.  He says he feels the size of the tumors have shrunk a little which is good but he is at stage 4, and the Oncologist said that he will need to get his affairs in order because its terminal.  He said treatable but not cureable.  Today I cried so much realizing I was in denial thinking that my dad is strong and will beat this, but he is getting weak and my mother is breaking down.  

What is the likely hood he will get through this and live a normal life.  I've read good stories and bad stories, and it's all just making me numb.  He is 62.  Please if anyone could help please let me know and thank you.

 God bless you all

Hello Everyone, I apologize for not getting back sooner but my father has passed away with pancreatic cancer on July 29 at 5:00am. Ok the week of July 4, he began to look yellow meaning jaundice and was getting smaller and weaker. He went for chemo that Monday but didn’t give to him because his vitals were not good, instead they hydrated him. Next day they were going to do a blood diffusion because his cell count was low but they decided against it. The next day they tried for chemo but could only do so much. Then on July 4, we had the day off and watched the fireworks and he seemed ok. However going back to work the next day I get a call after lunch from my mother I need to come to the hospital after work. Dad told me to stay till after work, so I did and that was the longest 4 hours. I get to the hospital and find his room and he looks horrible. My mom and dad said they have something to tell me, but the Dr walked in and I grabbed him to the side and asked what’s happening? He told me my fathers body can’t take chemo anymore and the cancer has spread to his pancreas. I asked has anyone ever recovered from this state and he said no, he said my dad only has about a few months. So I go to the restroom down the hall and just yell and punch the wall over and over crying. I then went into my dad’s room and they told me what I heard. Dad said he wanted home hospice so I made sure that was getting set up so we could get him out of the hospital to a place he want to be. After cleaning and having the hospice staff install a bed, o2 machine, etc. I got him a better mattress and some nice sheets while they were still discharging him. Then on Saturday he was at home and I did everything in my power to make him comfortable, I fed him when he could eat, and gave him his medicines. Things seemed ok for the first week, luckily my grandmother his mom came in to help me and mom. The social workers made me the primary care giver. We talked, prayed and watched tv when we could but then the second week things got worse, wasn’t eating, laying down all the time, I even saw him sit up in bed late at night and was just looking at the floor with his night stand light on. I cried so much. He then turned around and waved at me and laid back down. I had to help him everywhere. The next week he had to be about 80 lbs from 170 when diagnosed. His mind was still sharp but would ramble the first few days, then it was like he couldn’t talk. I stayed next to him and saw that he was just starring out a million miles. He would then start to make these horrible noises of pain that I had to listen for Incase he needed more morphine or if he was chocking on his secretions I would have to give him atopi (spelling?). I didn’t sleep and eat for the whole 3 weeks and lost 40 lbs. but I couldn’t sleep knowing if my dad was in pain or needed anything. So on the morning of July 29, 4:30am Granny and I decided to take a quick nap. Thirty minutes later she comes into my room and says he is no longer breathing. I’ve never seen a man die let alone my loving father. It hurt, it hurt so bad but I couldn’t show it because I had to inform hospice and the funeral home. I then was the solely one planning his service, no one helped me so I was angry about that which kept the lose of my dad out of my head. So after the service on Aug 16, I didn’t feel closure because I was doing everything. I was going to go back to work the following Monday but found my mom outside asking where am I. She is being treated for dementia now and I am having to be her care giver now. I only hope and pray the doctors can slow it. But today I think I finally processed that my father is no longer here. Suddenly a big hole in me developed and then started to have flash backs as he was at his worse. That was today and I am still crying. I loved him so much. And I’m so scarred about my mother. But I am in a deep depression. Cancer is so horrible, I wish this disease on no one. I want to wake up from this nightmare. I hope others out there with this make it, I will pray for you all! The only comfort I have is he’s no longer suffering and he his with the Lord watching over us. I love you Dad!
The doctor was right when he said my father only had months. Diagnosed with stage 4 NET poorly differentiated tumors on Nov 1, 2018, that spread to his pancreas in July, and passed away July 29. He lived to the fullest in his last days and always kept a smile on his face. He will be forever known as “Smiley Paul”. Love you so much dad!

RE: Anyone out there with Neuroendocrine Cancer?

by deb777 on Wed Aug 28, 2019 02:51 PM

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I am SO very sorry about your dad and all that you're going through. I wish I could make it better. Just know you're not alone. Virtual hugs to you ...

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