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caseyzson's Message Board Messages

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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: 

http://ascopubs.org/doi/abs/10.1200/JCO.2017.35.15_suppl.e15

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?

Thank you so much PhillipJax for your response.  It is hard sometimes as a desperate care-giver to find the true avenues with efficacy.  And thank you again for your decision guide.  The one thing I would like to ask...and again, I am sorry for the one off questions, is the ability for TACE (transarterial chemoembolization) in pancreatic liver mets.

There is a doctor / surgeon by the name of Rober Donoway in Florida who has suggested TACE in other forums, and there appear to be good international (albeit small) studies on them (with overall surival mentioned)

www.ncbi.nlm.nih.gov " target="_blank" rel="nofollow">www.ncbi.nlm.nih.gov " target="_blank" rel="nofollow">www.ncbi.nlm.nih.gov " target="_blank" rel="nofollow">www.ncbi.nlm.nih.gov /pubmed/29221632
www.ncbi.nlm.nih.gov " target="_blank" rel="nofollow">www.ncbi.nlm.nih.gov " target="_blank" rel="nofollow">www.ncbi.nlm.nih.gov " target="_blank" rel="nofollow">www.ncbi.nlm.nih.gov /pubmed/21975434
www.ncbi.nlm.nih.gov " target="_blank" rel="nofollow">www.ncbi.nlm.nih.gov " target="_blank" rel="nofollow">www.ncbi.nlm.nih.gov " target="_blank" rel="nofollow">www.ncbi.nlm.nih.gov /pubmed/28099930
Thank you again

On Aug 09, 2018 9:51 PM PhilipJax wrote:

Metronomic plus Anti-Inflammatory Hydroxychloroquine

Dear Caseyzson,
          This reply will be delayed a few days due to its links.  Some items to consider:
1. If this is a trial, send me the trial number or the precise trial name.
2. The chemo agents are apparently delivered Metronomically, which is the administration of continuous, low-dose anticancer drugs.  What are the drugs?
3. There is some literature at my website on Metronomics, for which there have been very few clinical trials, and probably no new ones.  The website is here:
https://pancreatic.altervista.org/ "" target="_blank" rel="nofollow">https://pancreatic.altervista.org/ " target="_blank" rel="nofollow">https://pancreatic.altervista.org/
          So, one must lean toward the established delivery schedules developed via clinical trials – what works best for most, might work for me. 
          We are prudent to avoid a decision based on REASON alone, and to stick to the schedules established by trials, because they have produced cold hard performance numbers (RR, PFS, OS).
4. What research have you found to support the proposed regimen?  The anti-inflammatory Hydroxychloroquine will likely do no harm and may help.
5. Regarding IRE, most metastatic patients won’t qualify, unless there are very few metastases.  And, interventional radiologists (not surgeons) are more likely to take a metastatic patient, so there will be less IRE treatment accuracy.  But, if few metastases, IRE is possible.  You are in the UK, I assume.
6. What is your mother’s ECOG ranking?  Refer to my Decision Guide, available here:
http://jaxelection.altervista.org/pancreatic/PJaxDecisionAlg orithm.pdf"" target="_blank" rel="nofollow">http://jaxelection.altervista.org/pancreatic/PJaxDecisionAlg target="_blank" rel="nofollow">http://jaxelection.altervista.org/pancreatic/PJaxDecisionAlg
And, please tell other forums about the Guide.
         PhilipJax

thanks everyone!  I joined the Nanoknife group on facebook!

PhillipJax to answer your questions:

1. It's not a trial, but designing our own type of trial similar to what this doctor designed for himself and is in remission for two years www.ncbi.nlm.nih.gov /pmc/articles/PMC6049054

2. My mother is a patient now at Brucnker Oncologst, which is a bit unorthodox but very good.  Our metronomic + Vitamin C schedule is based on a small Phase 2 study that they did.  Basically it's Gemcitbine + FOLFIRINOX, low dose

ascopubs.org /doi/abs/10.1200/JCO.2016.34.15_suppl.e15745

3. The trial was small and was a mix of recurrent / advanced, but OS at 11 months was 75%

4. The propsed regimien of hydroxychloroquine is based on the above paper by Dr. Bigelsen that he used on himself and also this study 

ascopost.com /issues/may-25-2017/hydroxychloroquine-boosts-antitumor-activity-of-neoadjuvant-chemotherapy-for-pancreatic-cancer/

5. There is a doctor out of Hollywood, FL, Robert Donoway who does IRE on metastatic patients that fit a particular criteria.  I am from the United States.  He posts in the nanoknife group and I have been following him.

6. My mother's ECOG ranking is 0-1.

I spoke with the oncologist yesterday, and we may add the Hydroxychloroquine sooner than later.  We are also thinking of using Y90 or SBRT for the liver mets first.  There is some good data in CRC Stage 4, and some very early studies in Stage 4 Pancreatic.  Hoping to stay one step ahead of this beast.

Hi PhilipJax,

Apologies for my previous post, but I kept getting errors trying to post.  I wanted to thank you for all of your dedicated research on pancreatic cancer.  You've helped my family so much already, guiding us towards treatments that show actual efficacy.  From the various facebook groups and forums I am a part of, you've helped more than you know.

Based on your research, I was wondering your thoughts on this possible treatment.  It seems this if low toxicity can be managed, than this could be effective for treating Stage 4 (which my mother has).

Combination of IRE + Low Dose Chemotherapy + Hydroxychloriquine

I used your research on IRE and saw that it is an effective way of managing the cancer (also The Guardian released an article on this yesterday, I will link in another comment).

Hydroxychloriquine acts as an autophagy inhibitor, and could aid to destroy the cells that barely survive from the IRE and chemotherapy.  Constant low dose chemotherapy after IRE could make this more effective, as previous IRE studies showed disease progression.

I'd be very intersted in your thoughts. Thank you so much!

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