1. < Pancreatic Cancer

NED: the highs and lows of No Evidence of Disease

Posted by marienewland @mnewland99, Apr 14 1:47pm

NED, No Evidence of Disease are 3 words that are music to my ears. I heard them last week and it was a joy to hear, but the practical side of me knows what up I’m up against. I’ve been off my 1 drug chemo for 1 month due to a move to a new place - shangrila I call it because we have a view of a lake yet live in a beach town. I didn’t want to get too excited until I got my CA19-9 results today - it is no longer in the normal range and way higher than I expected. When I first looked at the number it took my brain a few seconds to process it and then a few seconds later we had an earthquake here adding to the drama of it all. Good news is that the Revolution Medicines trial, phase 3 will be beginning any day now. However, being phase 3 you have a 50% chance of getting the “placebo”. Some will probably freak out when I use that term and say it’s not so - but it really is. This test is randomized so 50% will get the trial drug RMC 6236 and 50% will get some chemo drug they are trying out (but gemzar doesn’t come in pill form that I know of). My scan has been rescheduled to this month instead of next minth so I’m grateful to my dr for that, and I’m also grateful that he already put me on the trial list. Lastly, I’m grateful that I get to see my daughter graduate next month as I didn’t think last year that I would be here at all. Well, I’ll continue holding my head up high and carrying the torch for new beginnings. Prayers and blessings for all.

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gamaryanne | @gamaryanne | 3 days ago
In reply to @markymarkfl "I think I listened to the same podcast and got pretty excited. He's obviously a respected..." + (show)
@markymarkfl

I think I listened to the same podcast and got pretty excited. He's obviously a respected and accomplished medical professional, but also a very successful businessman. The latter gives me some reason to be skeptical/cautious. When I went to the NCT website to investigate clinical trials, I found that a large number of those with his name in the text had been terminated or withdrawn: https://clinicaltrials.gov/search?term=Shiong

Companies he appears to have a stake in include (the now merged) ImmunityBio and NANT Bioscience. Searches for these keywords also return a lot of terminated and withdrawn trials.

I can't make a judgment solely on that data, but it also suggests homework is warranted.

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I agree caution is warranted. His theory on combatting cancer seems sound. Will watch to see the data on current trials.

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joiedevivre | @joiedevivre | 3 days ago
In reply to @mnewland99 "Hi Joie (such a beautiful name!) Broken leg (so sorry to hear that / hope he’s..." + (show)
@mnewland99

Hi Joie (such a beautiful name!)
Broken leg (so sorry to hear that / hope he’s on vitamin D and calcium) could definitely be a source of inflammation and I’m praying that’s what it is. Beautiful Easter Sunday for you and husband,!

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On Vit D3 and on calcium. Poor man pops more pills in a month than I have done in 10 years!

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markymarkfl | @markymarkfl | 4 days ago
In reply to @gamaryanne "Happy Easter! Since you are in S Calif wondering if you have read or know of..." + (show)
@gamaryanne

Happy Easter!
Since you are in S Calif wondering if you have read or know of Dr Patrick Soon-Shiong ? I listened to a 3 hr podcast discussing his strategy with pancreatic cancer, colon cancer, and long COVID. Very interesting. He created Abraxane. And now has an FDA approved therapy for bladder cancer. Located in El Segundo.

Jump to this post

I think I listened to the same podcast and got pretty excited. He's obviously a respected and accomplished medical professional, but also a very successful businessman. The latter gives me some reason to be skeptical/cautious. When I went to the NCT website to investigate clinical trials, I found that a large number of those with his name in the text had been terminated or withdrawn: https://clinicaltrials.gov/search?term=Shiong

Companies he appears to have a stake in include (the now merged) ImmunityBio and NANT Bioscience. Searches for these keywords also return a lot of terminated and withdrawn trials.

I can't make a judgment solely on that data, but it also suggests homework is warranted.

REPLY
1 reply
chrk | @chrkuh | 4 days ago
In reply to @gamaryanne "Hello, yes. The plan was SBRT 5 rounds on small module in my lung then 4..." + (show)
@gamaryanne

Hello, yes. The plan was SBRT 5 rounds on small module in my lung then 4 rounds of Naliri. My CA19-9 has dropped from 600s to 200s. I have one more round then we will scan again.

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We are being considered for a trial as gem abrasive doesn't seem to be working and it is making him very sick and weak. Little scared not sure whether to go on the trial if offered as the other option is the folfirinox modification. He did have good results before whipple with 12 rounds of the folforinox but it.came back after 3 Mos in liver.

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marienewland | @mnewland99 | 4 days ago
In reply to @gamaryanne "Happy Easter! Since you are in S Calif wondering if you have read or know of..." + (show)
@gamaryanne

Happy Easter!
Since you are in S Calif wondering if you have read or know of Dr Patrick Soon-Shiong ? I listened to a 3 hr podcast discussing his strategy with pancreatic cancer, colon cancer, and long COVID. Very interesting. He created Abraxane. And now has an FDA approved therapy for bladder cancer. Located in El Segundo.

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No, I hadn’t heard of him, but so very interesting that he was also on COVID vaccine team. A very smart man. Previously had a neighbor who’s boyfriend had bladder cancer and heard it was very painful; really hoping dr has hit the jackpot again.

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marienewland | @mnewland99 | 4 days ago
In reply to @gamaryanne "Hello, yes. The plan was SBRT 5 rounds on small module in my lung then 4..." + (show)
@gamaryanne

Hello, yes. The plan was SBRT 5 rounds on small module in my lung then 4 rounds of Naliri. My CA19-9 has dropped from 600s to 200s. I have one more round then we will scan again.

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Fantastic news gamaryanne and I’m praying for many more decreases in CA19-9 for you and have a blessed Easter!

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marienewland | @mnewland99 | 4 days ago
In reply to @joiedevivre "My husband's markers have gone from normal in Nov 24 to about 200 this month. We..." + (show)
@joiedevivre

My husband's markers have gone from normal in Nov 24 to about 200 this month. We hope it is due to the inflammation from the tibia fracture. Blessed Easter!

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Hi Joie (such a beautiful name!)
Broken leg (so sorry to hear that / hope he’s on vitamin D and calcium) could definitely be a source of inflammation and I’m praying that’s what it is. Beautiful Easter Sunday for you and husband,!

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1 reply
marienewland | @mnewland99 | 4 days ago
In reply to @markymarkfl "Congratulations!!!!!!!!!!!!!! That's all fantastic news given where you've been." + (show)
@markymarkfl

Congratulations!!!!!!!!!!!!!! That's all fantastic news given where you've been.

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I meant City of Hope - chemo has really destroyed my brain!
Happy Easter!!
BTW - reached another one of my goals and that is I’m doing the Walk for Pancreatic cancer this year (next Saturday) at Anaheim Stadium! I was always weak before due to chemo or whatever, but since I’m only on 1 chemo drug this year I’m going to do it with Hoag Cancer Center team - I’m so so excited about that!!!

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gamaryanne | @gamaryanne | 4 days ago
In reply to @mnewland99 "Hello gamaryanne, I hope you are doing well after your radiation treatment. CA19-9 has always been..." + (show)
@mnewland99

Hello gamaryanne,
I hope you are doing well after your radiation treatment.
CA19-9 has always been a good tracker for me. Mutations change I guess ( something I didn’t know before). My Guardant360 or liquid biopsy test didn’t show any pancreatic mutations other than TP53 which was noted to be probably benign and at an occurrence of 0.3% so I’m surprised that my oncologists aren’t correct about the NED, but on the other hand I always say this disease has been like a roller coaster ride for me. I have t done much walking g lately as I went I to a deep depression for 2 days, but y day 3 I had to lift my spirits up since I had an interview to be an environmental consultant subcontractor that a friend set up for me so I’ve been pretty busy preparing my proposal. I hope you are doing wonderful!

Jump to this post

Happy Easter!
Since you are in S Calif wondering if you have read or know of Dr Patrick Soon-Shiong ? I listened to a 3 hr podcast discussing his strategy with pancreatic cancer, colon cancer, and long COVID. Very interesting. He created Abraxane. And now has an FDA approved therapy for bladder cancer. Located in El Segundo.

REPLY
2 replies
gamaryanne | @gamaryanne | 4 days ago
In reply to @chrkuh "After the trial stopped being effective are you back on chemo?" + (show)
@chrkuh

After the trial stopped being effective are you back on chemo?

Jump to this post

Hello, yes. The plan was SBRT 5 rounds on small module in my lung then 4 rounds of Naliri. My CA19-9 has dropped from 600s to 200s. I have one more round then we will scan again.

REPLY
2 replies
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