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Mike
@meppard

Posts: 8
Joined: Nov 11, 2017

Time misused

Posted by @meppard, Thu, Feb 8 2:34pm

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

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

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?

@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

@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

@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

@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.

@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

Lost my place in the Rova T clinical trial, which has devastated me. Could have shortened my life significantly.

@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

@meppard Hello Mike:

I understand your devastation! I do hope the oral chemo works well on this new lesion.

I look forward to hearing from you again.

Teresa

Hello @meppard

I have been thinking about you and wondering how you are doing with the oral chemo that was to start in February. I hope that it is effective against the recent lesion.

I look forward to hearing from you again.

Teresa

@meppard Hello Mike

I hope that your chemo treatments have been helpful. How are you doing?

Teresa

Hello @linnythepoo

In your last post you were hoping to be involved with the Rova-T clinical trial and I was wondering if you were part of that trial now?

I would enjoy hearing from you. How are you feeling these days?

Teresa

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