caseyzson's Message Board Messages

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Thank you PhillipJax for these write-ups.  I was speaking to a researcher who was excited about a cohort from this study: http://dailynews.ascopubs.org/do/10.1200/ADN.19.190042/full/

This was SBRT + PD1 + CTLA4, in both stage 3 and stage 4 patients.  In a subset of patients, 2 had >12 months response.  The researcher said they will likely push for a larger trial based on this dosage (SBRT before, followed by combo PD1 + CTLA4).  The reason I thought this was exciting is that this type of therapy could be given off-label currently.  We actually met with a NIH hospital and based on the small results, the radiologist said that he would be willing to try this as an option down the line for my mother.  He has done it in lung cancer before and is ok with the safety profile.  However, he would also like to see the data validated in a larger study.

The idea of priming the immune system with SBRT has been studied before, but this is the first time I've seen responses in unresectable pancreatic cancer.  Hopefully biomarkers can be used in the future to find populations of patients this would help the most, but would love your opinion on this new study.

RE: Considering mannose.

by caseyzson - December 28 at 12:37 AM

Hi Baloo- happy holidays, hope all is well.  Wondering how your treatment is going...wishing you a happy new year!

Andrea, not to take PhillipJax away from answreing, but if your dad tested for CEA along with CA-19-9?  CEA is a tumor marker that is expressed in the blood, my mother gets this tested with her blood every time she goes in.  I've read that just as some PC patients don't express CA-19-9, some do not express CEA as well...but that most do.  I would wait for Phillip to confirm this though.

Also, in other news, it looks like tamoxfien, the breast cancer drug, is back in the news again as it COULD be helpful with PC, and new science behind why: https://medicalxpress.com/news/2018-12-breast-cancer-drug-ch

It was already tested in small phase 1/2 trials and shown it could have some benefit: https://www.ncbi.nlm.nih.gov/pubmed/12174927

PhillipJax, any thoughts on Tamoxifen?  It's a cheap drug that can be used today - some human data exists so wondering if you think it would be something to ask oncolgist about if you are in 3rd / 4th line as we are.

Please disregard, this question was already answered earlier.  Seems Proton is one of the better options..apologies.

Hi PhillipJax,

I looked on your decision guide and also this site, but it is hard to search - I was wondering what your thoughts of local Y90 radiation for the treatment of liver metastsis.  This is meant to hopefully extend the time for other new trials to join: 


Rest of the cancer is stable.

Thank you!

RE: Considering mannose.

by caseyzson - December 04 at 11:28 PM

I read that paper, its encouraging to hear that Mannose is able to be aborbed so readily in the lining...hopefully that means it's able to be metabolized as many supplements aren't able to be absorbed at all in the doses that are recommended.

Have you added this to your regimin?  It seems as if this + Vitamin C IV could be beneficial, or this + a chemo agent.

RE: Considering mannose.

by caseyzson - November 27 at 2:56 PM

Hi Baloo...it seems my other comment did not post, that happens a lot with this site..anyway:

Thank you for responsding to my other thread with your comments, I thought I would answer here since I had a follow up in regards to Mannose.  I'm sorry that you decided against the trial, but it may have been for the better given your analysis of it.  My mother failed two clinical trials and her current oncologist is more in favor of reporurposing active chemo agents before trials.

Have you started on Mannose yet?  I wonder how the biovavailability will be in the gut.  I bought my mother some but we are waiting until next week to start.  From the Nature paper, it seems that it can act like a trojan horse making the cancer cells take up Mannose instead of glucose, and might work with a cytotoxic agent.

Have you looked into Mebendazole or Fenbendazole (the anti-paristic drugs)?  They are part of the Repurposing Drugs intiative.  

My mother also takes Hydroxychloroquine to try and block the autophagy capabilities of the cancer.  Metformin is another drug we have but have not taken.  We are looking into radiation for her liver mets, and hoping a good clinical trial comes up as well, but as of now there are none I see.

I have not, but this is so great to hear 50 months!  (No surgery I presume?)

What chemo has he been on in total?  There is a thought that you can rechallenge older chemos in later lines if possible (from an oncologist - but he also said the data is limited b/c so few PC patients make it that far).

My mother is 20 months diagnosis of PC so far, stage 4 entire time.  We are moving onto her 5th treatment and 3rd chemo line.  She has responded to every chemo, for a little while at least.

We are also looking into Y90 for her liver mets . Has your husband had any radation to his liver?  

Again, thank you for sharing as you give people hope!

RE: Considering mannose.

by caseyzson - November 26 at 9:19 PM

hi Baloo,

Thank you for responding to my other thread with your comments, I thought I would answer here since I had a follow up question regarding Mannose.

I'm sorry that you decided against that trial, but it may have been for the better given your analysis.  My mother failed two clinical trials. Her current oncologist is more in favor of repurposing active chemo agents in other cancers before trials (as most trials lack single agent activity).  

Are you looking into High Dose Vitamin C or Radiation at all?  My mother does IV Vitamin C, on top of low dose chemotherapy, and we are looking to add radiation for her liver metastases at some point.  

The Ars Technica article on Mannose is a good one, but I also read through the actual Nature journal.  I'm wondering how easily absorbed mannose is in the Gut (as a supplement) to actually reproduce the effects stated in the article.

In the same way Oral Vitamin C vs. IV Vitamin C is different in terms of blood absorbtion, I wonder if Mannose is the same.  Although the paper does say it is absorbed well through the intestine, I wonder if supplements are the same.

Have you already started taking it?  I think my mother will start this soon right before chemotherapy.  As the Nature paper says, in cell culture, Mannose by itself does not have a killing effect, but makes cancer cells more suspectible to the cytotoxics they used.  Also, as you know, culture does not equal human, but in desperate times, we look for low risk / high rewards, while still staying on top of relevant studies and approved treatments as you have done.

Also, have you looked into Mebendenzaloe or Hydroxychloroquine (authphagy inhibitor?)

Thanks for posting!  

Hi Baloo I have been following your posts. My mother has stage 4 pancreatic cancer diagnosed 20 months ago. She’s going on her 5th line of therapy this week. When will you be starting the trial and how have you been doing?
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