MDA Phase 1 trial Cons.

[ieowi]

So today we went to see phase 1 trial and this is what happened.....

unfortunately they don't have anything to offer for colon cancer MSS and MSI-LOW, he said TAS-1 Is much better than anything they have, I told him what if the cancer didn't stop? he said they couldn't offer anything else after that he said I am sorry to say this but for colon cancer MSI-LOW and MMS we don't have anything he doesn't like saying this to a patient but this is the case now.
I asked about PD-L1 + other drugs he said we don't believe it would work, on paper it may look good but we don't think it would work( maybe he think so cuz nothing worked out yet? ). he said if there is anything else out there which is good MD Anderson will have it, but now nothing is available.
one thing they were trying to do was recently put on HOLD for a couple of months due to toxicity issues.

i have considered the quality of life issue seriously and addressed it to Dad we are still thinking of our options with one option still open for MSKCC.

thought of sharing this with all of you.

SUGGESTIONS ARE VERY WEOLCOMED !

[rp1954]

Some, faced with no satisfactory or standard treatments, or even trials, look for alternative and experimental answers outside the big name institutions. Probably the most common, closest starting point to standard medicine has been some dosage of metronomic ADAPT (xeloda + celecoxib) as the backbone, extended with other cancer inhibiting, immune increasing, drugs and nutrients.

One looks for improvements, whether to stop or slow the biomarkers increases, or other bloodwork and quality of life improved.

[ieowi]

Some, faced with no satisfactory or standard treatments, or even trials, look for alternative and experimental answers outside the big name institutions. Probably the most common, closest starting point to standard medicine has been some dosage of metronomic ADAPT (xeloda + celecoxib) as the backbone, extended with other cancer inhibiting, immune increasing, drugs and nutrients.

One looks for improvements, whether to stop or slow the biomarkers increases, or other bloodwork and quality of life improved.

thank you i will be doing that now.

[skypup]

This is important enough that I feel the need to come back on and toss out an option. I have started a phase III trial for Xilonix that you may want to consider. I'll post a thread soon with a summary of the research that has been done on it so far.

[ieowi]

This is important enough that I feel the need to come back on and toss out an option. I have started a phase III trial for Xilonix that you may want to consider. I'll post a thread soon with a summary of the research that has been done on it so far.

please do so i am waiting to see it, i will read more about it

[ieowi]

This is important enough that I feel the need to come back on and toss out an option. I have started a phase III trial for Xilonix that you may want to consider. I'll post a thread soon with a summary of the research that has been done on it so far.

is that in Poland !??!!?!!!?

[jortego128]

ieowi, was MD Andersons proton therapy not an option with peri mets? Supposedly they have pretty precise control as to the depth /focus of the radiation. Thinking logically, without knowing the specifics, it would seem like they could target mets in the peritoneum with that. If not, I wonder why?

[ieowi]

ieowi, was MD Andersons proton therapy not an option with peri mets? Supposedly they have pretty precise control as to the depth /focus of the radiation. Thinking logically, without knowing the specifics, it would seem like they could target mets in the peritoneum with that. If not, I wonder why?

maybe because there are other tumors, otherwise i am sure it would have been suggested.

[midlifemom]

Ieowi,
You mention you still have one option at MSKCC. Can you share what that option is?

[ieowi]

Ieowi,
You mention you still have one option at MSKCC. Can you share what that option is?

Radiation , embolization with pembrolizumab.
They said msi status doesn't matter. When I asked why you think it would work ?
They said the destruction of the tumor using rd or embo. May trigger immune system to attack with the help of pd-l1.

I don't really know if this idea seems reasonable or not.

[DK37]

I'm so sorry your Father got this kind of opinion & news from MD Anderson ieowi...

Although unfortunately this may not be the correct timing to help your Father, everyone knows I personally am openly of a different school of thought but unfortunately neither I nor the MD Anderson MD you spoke with has human data on 2nd/3rd generation therapies early in/entering soon trials to back up our beliefs. The ones I personally find most scientifically interesting are notably not at MD Anderson. For whatever reason, Johns Hopkins and MSKCC are the current epicenters of Immunotherapy research right now.

In the big picture I would like to remind everyone that last December (<1 year ago), every MD I heard from said immunotherapies "don't work against CRC". End of story. Proven in the all-comers Phase 1 trial. Scientists believed they had a great chances of working in MSI-high CRC. The science made sense. Then the rumors started up a few months later and then formal clinical data was announced in May that in fact, MSI-high CRC responded great! The "facts" changed in less than a year as human data was generated and announced. The MD's are now ecstatic about treating MSI-high CRC (and I am excited for our fellow MSI-high brothers and sisters!) But I wanted to illustrate that history to make a broader point.

I sincerely hope the timing works out for as many fellow patients as possible, including your Father.

WIshing you & your Father all the best ieowi,

-DK

[DK37]

Ieowi,
You mention you still have one option at MSKCC. Can you share what that option is?

Radiation , embolization with pembrolizumab.
They said msi status doesn't matter. When I asked why you think it would work ?
They said the destruction of the tumor using rd or embo. May trigger immune system to attack with the help of pd-l1.

I don't really know if this idea seems reasonable or not.

Radiotherapy & embolization are considered "immunogenic" cell deaths - where when the cell dies, its antigens are presented to immune cells - sort of like a mini cancer vaccination. There is hope that cancer vaccination + modern immunotherapies can generate a systemic immune response. This is called the "abscopal effect". It works in animal models - I have not off the top of my head seen human data on it.

[ieowi]

Ieowi,
You mention you still have one option at MSKCC. Can you share what that option is?

Radiation , embolization with pembrolizumab.
They said msi status doesn't matter. When I asked why you think it would work ?
They said the destruction of the tumor using rd or embo. May trigger immune system to attack with the help of pd-l1.

I don't really know if this idea seems reasonable or not.

Radiotherapy & embolization are considered "immunogenic" cell deaths - where when the cell dies, its antigens are presented to immune cells - sort of like a mini cancer vaccination. There is hope that cancer vaccination + modern immunotherapies can generate a systemic immune response. This is called the "abscopal effect". It works in animal models - I have not off the top of my head seen human data on it.

thank you for the explanation DK37, we are on process to see MSKCC for further examination unless "MDA comes up with a surprise for us !", we have no alternative options. I hope things work out for the best.