MDA Phase 1 trial Cons.

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ieowi
Posts: 202
Joined: Mon Jul 27, 2015 1:27 am

MDA Phase 1 trial Cons.

Postby ieowi » Mon Nov 16, 2015 8:34 pm

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 !
Father 58 yo , Colon cancer IV + 4 Lymph. 7/2015
K-ras Mutant,GNAS,FBXW7,PIK3CA, MSI-low
4 cycles irinotecan+FU5
developed abdominal met + lung met...Failed
4 cycle Oxaliplatin+folfox. peri met growing...Failed
unofficial trial !!!

rp1954
Posts: 1540
Joined: Mon Jun 13, 2011 1:13 am

Re: MDA Phase 1 trial Cons.

Postby rp1954 » Mon Nov 16, 2015 10:57 pm

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.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

ieowi
Posts: 202
Joined: Mon Jul 27, 2015 1:27 am

Re: MDA Phase 1 trial Cons.

Postby ieowi » Mon Nov 16, 2015 11:47 pm

rp1954 wrote: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.
Father 58 yo , Colon cancer IV + 4 Lymph. 7/2015
K-ras Mutant,GNAS,FBXW7,PIK3CA, MSI-low
4 cycles irinotecan+FU5
developed abdominal met + lung met...Failed
4 cycle Oxaliplatin+folfox. peri met growing...Failed
unofficial trial !!!

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: MDA Phase 1 trial Cons.

Postby skypup » Tue Nov 17, 2015 1:28 am

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
Posts: 202
Joined: Mon Jul 27, 2015 1:27 am

Re: MDA Phase 1 trial Cons.

Postby ieowi » Tue Nov 17, 2015 1:37 am

skypup wrote: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
Father 58 yo , Colon cancer IV + 4 Lymph. 7/2015
K-ras Mutant,GNAS,FBXW7,PIK3CA, MSI-low
4 cycles irinotecan+FU5
developed abdominal met + lung met...Failed
4 cycle Oxaliplatin+folfox. peri met growing...Failed
unofficial trial !!!

ieowi
Posts: 202
Joined: Mon Jul 27, 2015 1:27 am

Re: MDA Phase 1 trial Cons.

Postby ieowi » Tue Nov 17, 2015 1:42 am

skypup wrote: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 !??!!?!!!?
Father 58 yo , Colon cancer IV + 4 Lymph. 7/2015
K-ras Mutant,GNAS,FBXW7,PIK3CA, MSI-low
4 cycles irinotecan+FU5
developed abdominal met + lung met...Failed
4 cycle Oxaliplatin+folfox. peri met growing...Failed
unofficial trial !!!

jortego128
Posts: 288
Joined: Sat Aug 15, 2015 7:47 am

Re: MDA Phase 1 trial Cons.

Postby jortego128 » Tue Nov 17, 2015 7:04 am

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?
DM 57 yrs old dx 6/8/15 T:4a N:1b M:1
KRAS G12D and TP53 C242fs mutations
Poorly Differentiated, Prominent Signet Ring Component(~50%)
Microsatellite Stable, 3 of (13)lymph nodes positive
15 Liver mets, largest 3.2 cm
Prim. Resection, Right Hemicolectomy 6/21/15
Start Chemo 7/20/15
2 rounds FOLFOX, 1 round FOLFOX +Avastin
CT 8/28/15, met growth, largest 4.5cm
4 rounds FOLFOX+Avastin
CT 11/06/15 mets stable, lungs clear
Begin FOLFIRI+Avastin 11/17/15, Stop chemo 1/26/16
Entered Paradise 3/11/2016

ieowi
Posts: 202
Joined: Mon Jul 27, 2015 1:27 am

Re: MDA Phase 1 trial Cons.

Postby ieowi » Tue Nov 17, 2015 7:10 am

jortego128 wrote: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.
Father 58 yo , Colon cancer IV + 4 Lymph. 7/2015
K-ras Mutant,GNAS,FBXW7,PIK3CA, MSI-low
4 cycles irinotecan+FU5
developed abdominal met + lung met...Failed
4 cycle Oxaliplatin+folfox. peri met growing...Failed
unofficial trial !!!

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: MDA Phase 1 trial Cons.

Postby midlifemom » Tue Nov 17, 2015 7:30 pm

Ieowi,
You mention you still have one option at MSKCC. Can you share what that option is?
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

ieowi
Posts: 202
Joined: Mon Jul 27, 2015 1:27 am

Re: MDA Phase 1 trial Cons.

Postby ieowi » Tue Nov 17, 2015 8:43 pm

midlifemom wrote: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.
Father 58 yo , Colon cancer IV + 4 Lymph. 7/2015
K-ras Mutant,GNAS,FBXW7,PIK3CA, MSI-low
4 cycles irinotecan+FU5
developed abdominal met + lung met...Failed
4 cycle Oxaliplatin+folfox. peri met growing...Failed
unofficial trial !!!

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DK37
Posts: 510
Joined: Tue Sep 17, 2013 8:31 am
Location: San Diego

Re: MDA Phase 1 trial Cons.

Postby DK37 » Tue Nov 17, 2015 9:00 pm

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
6/4/2012 Dx Stage 3C CRC @ 40 yo. MSS, KRAS-WT, BRAF-WT, p53-mut
7/12 FOLFOX/FOLFIRI
2/13 NED!
8/13 Enlarged lymphs - Stable
10/14 Stage IV. Lung & Lymph mets. 5-FU+bev
3/15 Cetuximab
11/15 FOLFIRI + bev
11/16 Signs of FOLFIRI resistance (Lymph mets)
1/17 Palliative radiation for resistant mets
2/17 FOLFIRI + bev + Maraviroc (off-label)
3/17 FOLFIRI + Erbitux + Maraviroc (off-label)
MSS-CRC Clinical Trial Finder: http://trialfinder.fightcrc.org/
2016 Colondar 2.0 Model
DK37 Science Posts List

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DK37
Posts: 510
Joined: Tue Sep 17, 2013 8:31 am
Location: San Diego

Re: MDA Phase 1 trial Cons.

Postby DK37 » Tue Nov 17, 2015 9:04 pm

ieowi wrote:
midlifemom wrote: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.
6/4/2012 Dx Stage 3C CRC @ 40 yo. MSS, KRAS-WT, BRAF-WT, p53-mut
7/12 FOLFOX/FOLFIRI
2/13 NED!
8/13 Enlarged lymphs - Stable
10/14 Stage IV. Lung & Lymph mets. 5-FU+bev
3/15 Cetuximab
11/15 FOLFIRI + bev
11/16 Signs of FOLFIRI resistance (Lymph mets)
1/17 Palliative radiation for resistant mets
2/17 FOLFIRI + bev + Maraviroc (off-label)
3/17 FOLFIRI + Erbitux + Maraviroc (off-label)
MSS-CRC Clinical Trial Finder: http://trialfinder.fightcrc.org/
2016 Colondar 2.0 Model
DK37 Science Posts List

ieowi
Posts: 202
Joined: Mon Jul 27, 2015 1:27 am

Re: MDA Phase 1 trial Cons.

Postby ieowi » Tue Nov 17, 2015 10:04 pm

DK37 wrote:
ieowi wrote:
midlifemom wrote: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.
Father 58 yo , Colon cancer IV + 4 Lymph. 7/2015
K-ras Mutant,GNAS,FBXW7,PIK3CA, MSI-low
4 cycles irinotecan+FU5
developed abdominal met + lung met...Failed
4 cycle Oxaliplatin+folfox. peri met growing...Failed
unofficial trial !!!


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