RE-POST - VITALLY IMPORTANT INFO: MSI-TESTING

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DK37
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Location: San Diego

RE-POST - VITALLY IMPORTANT INFO: MSI-TESTING

Postby DK37 » Sat Jan 30, 2016 12:00 pm

Even though I have posted before, I continue to hear questions ALMOST DAILY from people who don’t know the HIGH IMPACT of MSI-testing on CRC immunotherapy treatment strategies

THIS IS VITALLY IMPORTANT INFORMATION – so for the sake of new members & people who missed in previous posts, as a public service announcement for their sake I am going to start reposting this information once a month (old-timers that have seen before just scroll through :) - nothing new)

MSI-testing is a recommendation straight out of the American Gastroenterological Association and I believe there will be an ASCO guideline on it as well, if there isn’t already. The basics to discuss with your MD if you haven’t done already: http://fightcolorectalcancer.org/resear ... -patients/ and more in-depth information & two case studies. http://adventuresinlivingterminallyopti ... ies-vol-1/

I wrote both articles so I can answer questions in the comments…

-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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peanut_8
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Location: Capital of Texas

Re: RE-POST - VITALLY IMPORTANT INFO: MSI-TESTING

Postby peanut_8 » Sat Jan 30, 2016 12:26 pm

noted

Also sincere thanks for all the information you generously share with Colon Talk.

peanut
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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

Re: RE-POST - VITALLY IMPORTANT INFO: MSI-TESTING

Postby ieowi » Sat Jan 30, 2016 4:49 pm

I visited a doctor in my country in hope of getting drugs off-label. He didn't even know what is msi :x .
Unfortunately Not all doctors know what they should be knowing !!!
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 !!!

zx10guy
Posts: 180
Joined: Mon Jan 07, 2013 12:54 pm

Re: RE-POST - VITALLY IMPORTANT INFO: MSI-TESTING

Postby zx10guy » Sat Jan 30, 2016 4:56 pm

Personally, I feel information like this should be stickies at the top of the forum so you won't have to constantly bump up these threads or repost the information. Thank you for your work and efforts in getting the information out.

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DK37
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Location: San Diego

Re: RE-POST - VITALLY IMPORTANT INFO: MSI-TESTING

Postby DK37 » Sat Jan 30, 2016 10:02 pm

zx10guy wrote:Personally, I feel information like this should be stickies at the top of the forum so you won't have to constantly bump up these threads or repost the information. Thank you for your work and efforts in getting the information out.


Great idea, I wish I had thought of that - I'll ask CRGuy about making a sticky!

-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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CRguy
Posts: 9644
Joined: Sun Feb 10, 2008 6:00 pm

Re: RE-POST - VITALLY IMPORTANT INFO: MSI-TESTING

Postby CRguy » Sat Jan 30, 2016 10:25 pm

Hey buddy
we try to limit the # of permanent stickies, so doing it for each individual post topic may not work ....
..BUTT
... yes you just knew there had to be ONE !!!!! :mrgreen:

Your DK37 Science Posts List IS a sticky for now ... so each new update you link into THAT topic, and there are MANY !!!
will be accessible through this topic.
Best way to keep new info up front and center..... is to link into THIS stickied topic

WORD !!!!! :mrgreen:

Thanks for all your contributions here
and please gimme a PM if you need help keeping things up to date !

Cheers and HARMONY bro'
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Nik Colon
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Location: MN

Re: DK37 Science Posts List

Postby Nik Colon » Sun Jan 31, 2016 2:58 am

Just wanted to say....Awesome! your own sticky thread!
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

jortego128
Posts: 286
Joined: Sat Aug 15, 2015 7:47 am

Re: RE-POST - VITALLY IMPORTANT INFO: MSI-TESTING

Postby jortego128 » Mon Feb 01, 2016 8:08 pm

Hey DK- being you have your own sticky - I have a suggestion (please feel free to completely ignore it if you wish :mrgreen: ) -- It would be extremely helpful to have a comprehensive "summary" of treatment options/information for newly diagnosed - everything from Avastin to Zaltrap if you know what I mean. Nothing too detailed on anything, just things to consider / ask onc about to make sure nothing falls through the cracks.

I know you have much info on your blog and other sites, and I certainly dont mean for you to duplicate your efforts unnecessarily, but something such as this may help a lot of newcomers, you know?

For example, of course from personal experience - as a newly dx stage IV unresectable - knowing the various options from FOLFOX to Avastin and Erbitux/Vectibix to HAI and SIRT while keeping track of things such as MSI and ECOG status would be extremely helpful in such a sticky.

Just an idea - perhaps it could be comprised of more than one sticky.

CRguy - also throwing this out there for your consideration as well.
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

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Nik Colon
Posts: 5210
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Location: MN

Re: RE-POST - VITALLY IMPORTANT INFO: MSI-TESTING

Postby Nik Colon » Mon Feb 01, 2016 8:20 pm

jortego128 wrote:Hey DK- being you have your own sticky - I have a suggestion (please feel free to completely ignore it if you wish :mrgreen: ) -- It would be extremely helpful to have a comprehensive "summary" of treatment options/information for newly diagnosed - everything from Avastin to Zaltrap if you know what I mean. Nothing too detailed on anything, just things to consider / ask onc about to make sure nothing falls through the cracks.

I know you have much info on your blog and other sites, and I certainly dont mean for you to duplicate your efforts unnecessarily, but something such as this may help a lot of newcomers, you know?

For example, of course from personal experience - as a newly dx stage IV unresectable - knowing the various options from FOLFOX to Avastin and Erbitux/Vectibix to HAI and SIRT while keeping track of things such as MSI and ECOG status would be extremely helpful in such a sticky.

Just an idea - perhaps it could be comprised of more than one sticky.

CRguy - also throwing this out there for your consideration as well.

I hadn't heard of ECOG until recently on here, so I looked it up. I see it has been mentioned years prior but I don't recall seeing it or missed it or something.

Here is a link if any one else is interested

http://ecog-acrin.org/resources/ecog-performance-status
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

jortego128
Posts: 286
Joined: Sat Aug 15, 2015 7:47 am

Re: RE-POST - VITALLY IMPORTANT INFO: MSI-TESTING

Postby jortego128 » Tue Feb 02, 2016 7:01 am

Its very important to keep track of if you are considering clinical trials. Awareness.
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

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

Re: RE-POST - VITALLY IMPORTANT INFO: MSI-TESTING

Postby DK37 » Wed Feb 03, 2016 1:04 am

CRguy wrote:Hey buddy
we try to limit the # of permanent stickies, so doing it for each individual post topic may not work ....
..BUTT
... yes you just knew there had to be ONE !!!!! :mrgreen:

Your DK37 Science Posts List IS a sticky for now ... so each new update you link into THAT topic, and there are MANY !!!
will be accessible through this topic.
Best way to keep new info up front and center..... is to link into THIS stickied topic

WORD !!!!! :mrgreen:

Thanks for all your contributions here
and please gimme a PM if you need help keeping things up to date !

Cheers and HARMONY bro'
CRguy



That's awesome - thanks CRguy!

-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

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

Re: RE-POST - VITALLY IMPORTANT INFO: MSI-TESTING

Postby DK37 » Wed Feb 03, 2016 1:06 am

jortego128 wrote:Hey DK- being you have your own sticky - I have a suggestion (please feel free to completely ignore it if you wish :mrgreen: ) -- It would be extremely helpful to have a comprehensive "summary" of treatment options/information for newly diagnosed - everything from Avastin to Zaltrap if you know what I mean. Nothing too detailed on anything, just things to consider / ask onc about to make sure nothing falls through the cracks.

I know you have much info on your blog and other sites, and I certainly dont mean for you to duplicate your efforts unnecessarily, but something such as this may help a lot of newcomers, you know?

For example, of course from personal experience - as a newly dx stage IV unresectable - knowing the various options from FOLFOX to Avastin and Erbitux/Vectibix to HAI and SIRT while keeping track of things such as MSI and ECOG status would be extremely helpful in such a sticky.

Just an idea - perhaps it could be comprised of more than one sticky.

CRguy - also throwing this out there for your consideration as well.



Not a bad idea - it would be really helpful to newcomers! I'm juggling a lot right now (hate to admit it but Folfiri is slowing even me down a bit ha - fatigue is my only significant side effect so far) so I'm not sure when I could get to actually researching (to make sure I don't miss anything) & typing up from scratch - BUT this info may already be summarized somewhere on the web, doing the synopsis work for us. I think it would probably be a good fit for the existing sticky "Terminology and abbreviations" since that has a lot of great newcomer info in it already? (What do the admins think?) If you or anyone else sees a good synopsis out there, post or comment the link - I'll be on the look out too. Sound like a plan?

-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

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

Re: RE-POST - VITALLY IMPORTANT INFO: MSI-TESTING

Postby DK37 » Wed Feb 03, 2016 1:12 am

Nik Colon wrote:I hadn't heard of ECOG until recently on here, so I looked it up. I see it has been mentioned years prior but I don't recall seeing it or missed it or something.

Here is a link if any one else is interested

http://ecog-acrin.org/resources/ecog-performance-status


Thanks Nik (and jortego128) - A good link & information of its importance to add to the "CLINICAL TRIALS and Important Links" and/or "Terminology and abbreviations" stickies?

-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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bitchslapped
Posts: 1505
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Location: PNW/USA

Re: RE-POST - VITALLY IMPORTANT INFO: MSI-TESTING

Postby bitchslapped » Wed Feb 03, 2016 2:58 am

Under the sticky thread Clinical Trials & Other Important Links there is a downloadable guide from National Comprehensive Cancer Network (NCCN) for "standard of care" which is also in an older thread.
There is also a link to DK37's science posts, which I guess can now be deleted.
In the Abbreviations & Terminology sticky thread, there is a lot of info including definitions of various procedures (though not in depth) as well as what is discussed in the threads, info on staging & so on.

CRguy, the old link in the Abbreviations & Terminology thread did not work (I noticed you had posted in 2016 all links were working) for the NCCN guidelines.

The recommendations depending on where you are reading, are that clinical trials should be considered @ each point of decision making in one's treatment plan. Clinical trials lack participants because most people don't know about them.

Anyone can add the ECOG link w/explanation to the Clinical Trials Important Links sticky which is where it makes the most sense. If it's not there in a few days, I'll add it.

BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

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CRguy
Posts: 9644
Joined: Sun Feb 10, 2008 6:00 pm

Re: RE-POST - VITALLY IMPORTANT INFO: MSI-TESTING

Postby CRguy » Wed Feb 03, 2016 11:53 am

(I noticed you had posted in 2016 all links were working)

OSM validated or marked as broken, the links in justsing's own original topic post only.

We'll take a look at the rest if the list as well.
Thanks
CR


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