1. < Cancer

Treatment for Stage IV Ampullary Cancer

Posted by Mike @meppard, Dec 1, 2017

I have stage IV cancer of ampulla of Vater, mets to liver. It is rare because it is small cell. Have had my regimen of chemo, would like surgery to remove tumor, hippec after. Ablation of liver tumors. Pinpoint radiation.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 1, 2017

Hello Mike, @meppard

I appreciate your posting a bit more about your disorder and treatment. It sounds like you have had a lot of care and treatment so far. You mention "hippec." As I'm not familiar with that, please explain a little more about that.

If you are comfortable sharing more we would be interested in knowing what symptoms led to this diagnosis and what tests were used for diagnostic purposes. Given the location, I'm thinking that you probably had an upper endoscopy?

As you mentioned in your first post that you were interested in a second opinion at Mayo, are you planning on scheduling an appointment?

I certainly wish you well as you continue to seek treatment.

Teresa

REPLY
2 replies
Mike | @meppard | Dec 1, 2017
In reply to @hopeful33250 "Hello Mike, @meppard I appreciate your posting a bit more about your disorder and treatment. It..." + (show)
@hopeful33250

Hello Mike, @meppard

I appreciate your posting a bit more about your disorder and treatment. It sounds like you have had a lot of care and treatment so far. You mention "hippec." As I'm not familiar with that, please explain a little more about that.

If you are comfortable sharing more we would be interested in knowing what symptoms led to this diagnosis and what tests were used for diagnostic purposes. Given the location, I'm thinking that you probably had an upper endoscopy?

As you mentioned in your first post that you were interested in a second opinion at Mayo, are you planning on scheduling an appointment?

I certainly wish you well as you continue to seek treatment.

Teresa

Jump to this post

I had gerd for years so I had EGD’S a lot. Had a cholecystectomy 5 years ago. Had ercp 2015 for sludge. Had another in sept of 2016. April of 2017, was jaundiced had ercp with stents. Biopsies came back small cell cancer, very rare. ESU confirmed Mets to liver. Have been through regimen of chemo with significant shrinkage of tumors. Trying to get into Rova T clinical trial at Barnes. I’m a 40 plus year OR Nurse, so I realize what’s going on. I will accept nothing but a cancer free report. Liver ablation, removal of cancer at ampulla of vater. Hipec procedure, radiochemo or what ever treatment it takes. That’s why I feel that the Mayo is best for me.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 1, 2017
In reply to @hopeful33250 "Hello Mike, @meppard I appreciate your posting a bit more about your disorder and treatment. It..." + (show)
@hopeful33250

Hello Mike, @meppard

I appreciate your posting a bit more about your disorder and treatment. It sounds like you have had a lot of care and treatment so far. You mention "hippec." As I'm not familiar with that, please explain a little more about that.

If you are comfortable sharing more we would be interested in knowing what symptoms led to this diagnosis and what tests were used for diagnostic purposes. Given the location, I'm thinking that you probably had an upper endoscopy?

As you mentioned in your first post that you were interested in a second opinion at Mayo, are you planning on scheduling an appointment?

I certainly wish you well as you continue to seek treatment.

Teresa

Jump to this post

Mike, @meppard

Being a nurse does make you very knowledgeable - I'm glad that you are pursuing the best treatment possible. My first NET was discovered the same way, through a routine EGD because of a history of GERD. After the first one there were follow ups on a regular basis.

You must be pleased to have, as you say, to have a "significant shrinkage of tumors." But I can certainly understand your desire to be cancer-free.

We look forward to following your journey to wellness. Will you keep in touch with us?

Teresa

REPLY
Mike | @meppard | Feb 8, 2018

I have had ampulla of vater small cell cancer with Mets to the. Went through my regimen of chemo, waited 3 months to qualify for RovaT trial, after waiting so long finally qualified for studied. Yesterday I was supposed to start. My regular oncologist wasn’t there so another came in and told me there was small lesion on my MRI, they aren’t sure what it is but knocked completely out of the trial. Will take huge amounts oral chemo for six weeks then another MRI, I doubt I can get back there was a waiting. I’m so pissed! Instead of sainting for 3 months, I could have liver ablations, proton beam to the pancreas. Also I believe we could have done a CT guided biopsy, and know what is was right at that time.

REPLY
5 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 8, 2018
In reply to @meppard "I have had ampulla of vater small cell cancer with Mets to the. Went through my..." + (show)
@meppard

I have had ampulla of vater small cell cancer with Mets to the. Went through my regimen of chemo, waited 3 months to qualify for RovaT trial, after waiting so long finally qualified for studied. Yesterday I was supposed to start. My regular oncologist wasn’t there so another came in and told me there was small lesion on my MRI, they aren’t sure what it is but knocked completely out of the trial. Will take huge amounts oral chemo for six weeks then another MRI, I doubt I can get back there was a waiting. I’m so pissed! Instead of sainting for 3 months, I could have liver ablations, proton beam to the pancreas. Also I believe we could have done a CT guided biopsy, and know what is was right at that time.

Jump to this post

Hello @meppard

I can understand your frustration about missing the RovaT trial and also losing time when you could have been in treatment. When you are dealing with cancer you look at every day as an opportunity to make some progress against it's progression, don't you?

If I may ask, was the recent lesion on your liver? Also, I noticed that when you first posted in November you were planning on getting a second opinion at Mayo, did that happen?

I look forward to hearing from you again to know how your treatment is coming along.

Teresa

REPLY
1 reply
linnythepoo | @linnythepoo | Feb 8, 2018
In reply to @meppard "I have had ampulla of vater small cell cancer with Mets to the. Went through my..." + (show)
@meppard

I have had ampulla of vater small cell cancer with Mets to the. Went through my regimen of chemo, waited 3 months to qualify for RovaT trial, after waiting so long finally qualified for studied. Yesterday I was supposed to start. My regular oncologist wasn’t there so another came in and told me there was small lesion on my MRI, they aren’t sure what it is but knocked completely out of the trial. Will take huge amounts oral chemo for six weeks then another MRI, I doubt I can get back there was a waiting. I’m so pissed! Instead of sainting for 3 months, I could have liver ablations, proton beam to the pancreas. Also I believe we could have done a CT guided biopsy, and know what is was right at that time.

Jump to this post

Hi @meppard ,

I am hoping to get into a Rova-T clinical trial too. I have periampullary cancer with mets to liver. Were you tested for DLL3 protein?

REPLY
5 replies
Mike | @meppard | Feb 8, 2018
In reply to @hopeful33250 "Hello @meppard I can understand your frustration about missing the RovaT trial and also losing time..." + (show)
@hopeful33250

Hello @meppard

I can understand your frustration about missing the RovaT trial and also losing time when you could have been in treatment. When you are dealing with cancer you look at every day as an opportunity to make some progress against it's progression, don't you?

If I may ask, was the recent lesion on your liver? Also, I noticed that when you first posted in November you were planning on getting a second opinion at Mayo, did that happen?

I look forward to hearing from you again to know how your treatment is coming along.

Teresa

Jump to this post

I have not yet, I’m ready. Going to Barnes hospital now

REPLY
Mike | @meppard | Feb 8, 2018
In reply to @linnythepoo "Hi @meppard , I am hoping to get into a Rova-T clinical trial too. I have..." + (show)
@linnythepoo

Hi @meppard ,

I am hoping to get into a Rova-T clinical trial too. I have periampullary cancer with mets to liver. Were you tested for DLL3 protein?

Jump to this post

Yes, I was starting 2/7

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 8, 2018
In reply to @linnythepoo "Hi @meppard , I am hoping to get into a Rova-T clinical trial too. I have..." + (show)
@linnythepoo

Hi @meppard ,

I am hoping to get into a Rova-T clinical trial too. I have periampullary cancer with mets to liver. Were you tested for DLL3 protein?

Jump to this post

Hello @linnythepoo

I'm glad that you joined our discussion. If I may ask, how long ago were you diagnosed? Have you had any surgeries or other treatments?

I look forward to hearing from you.

Teresa

REPLY
Mike | @meppard | Feb 8, 2018
In reply to @linnythepoo "Hi @meppard , I am hoping to get into a Rova-T clinical trial too. I have..." + (show)
@linnythepoo

Hi @meppard ,

I am hoping to get into a Rova-T clinical trial too. I have periampullary cancer with mets to liver. Were you tested for DLL3 protein?

Jump to this post

Diagnosed April 2018, have had six rounds of chemo, starting on oral chemo tomorrow , for whatever it is they saw on the head MRI.

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