MSI or MSS

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stu
Posts: 901
Joined: Sat Aug 17, 2013 5:46 pm

MSI or MSS

Postby stu » Sat Sep 22, 2018 3:49 am

Hi ,
Can I just ask at what point in the process do you find out the above ? Is it a standard part of the process or do you request it in certain circumstances?
Here in the UK no one knows about it . It’s not part of the oncologist conversation and I doubt very much it’s tested for here .
Given you have made Keytrunda part of first line treatment for MSI-H patients I am trying to find out why the debate is not happening over here . I think clinical trials would be the only access here but I am trying to get better informed .When I mention it to patients they have no idea what I am talking about and I see opportunities slipping through their fingers .
Very frustrating .
Just trying to make sure I am giving out the right information.
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

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peanut_8
Posts: 2317
Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: MSI or MSS

Postby peanut_8 » Sat Sep 22, 2018 1:04 pm

stu,
Can only speak from my own experience. Apparently my tumor was tested at the time of resection.

After reading here about the importance of knowing which situation you're in, I asked.

First my oncologist, he brushed me off.

Next my surgeon, who did some checking and found the answer, MSS.

I suspect that there isn't a standard procedure for testing here, butt don't really know.
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

heiders33
Posts: 314
Joined: Sat Nov 04, 2017 11:08 am

Re: MSI or MSS

Postby heiders33 » Sat Sep 22, 2018 1:51 pm

My oncologist was able to tell me that I was MSS from the biopsy taken at diagnosis. However, he didn’t offer it up, I had to ask about it after learning about it on this board. I too have no idea what the standard practice is.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS G12A
June-July 2017: 28 days of XEL/radiation
Sep 2017: laparoscopic LAR/loop ileostomy
Oct 2017 - February 2018: XELOX six rounds
Mar 2018: reversal
Apr 2018: CEA 2.1, normal blood counts
May 2018: CT liver spot
Aug 2018: Abnormal PET, CEA 2.4
Sep 2018: robotic and laparoscopic liver resection with HAI pump
Oct 2018: Clear CT and colonoscopy, CEA 1.7, begin six months FUDR and FOLFIRI

ronnieciao
Posts: 92
Joined: Sat Nov 08, 2014 1:58 pm
Location: Northern Italy and UK

Re: MSI or MSS

Postby ronnieciao » Sat Sep 22, 2018 3:18 pm

Hi Stu

From an European perspective (I know you're in the UK)- my mum was tested very early on. We're in Italy. It could have been because of her family history, however.

Best wishes

Veronica
DD of Mum, 53
Diagnosed CC Stage IVb, October 2014
Mets to liver, peri, ovaries, bones
Folfox + Panitumumab
5fu+Panitumumab
Folfiri + Avastin
Cetuximab monotherapy
Immunotherapy: Tecenriq (Atezolizumab) single agent trial: failed
Left us Feb 2017

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bitchslapped
Posts: 1526
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: MSI or MSS

Postby bitchslapped » Sat Sep 22, 2018 4:04 pm

Stu, I have followed this genomic MSI/MSS on/off forum since it began to evolve approx 2015. My impression is that the results of routine genomic testing during pathology of the tumor itself during resection reveal the microsatelite instability. Here on CT we see cases where the oncologist doesn't know the microsatellite status of their patients when asked, yet it appears to be available on the reports = routine in some hospitals, not necessarily specifically ordered by one's doctor. With the development of "targeted therapies" in recent years or "immunotherapy", or even more recently coined "precision oncology", greater emphasis has been placed on knowing one's MSI/MSS status. Microsatellite instability testing can also be ordered from tissue block (bank) archives if not done @ initial tumor removal.

Just for the heck of it:
The difference between genetic vs genomic testing:
Although commonly used interchangeably, the terms “genetics” and “genomics” are not synonyms. Both involve the study of genetic material and both are derived from the Greek word gen, which means birth or origin. But the similarities largely end there. Though genetics and genomics are each complex topics, the difference between them is much simpler: One (genetics) refers to a person’s genetic makeup, and the other (genomics) is typically used in reference to a tumor’s molecular composition. You can also think about genetics in terms of inherited traits and genomics in terms of cancer-specific mutations.

Something going on over there in your part of the hemisphere:
https://colorectalcancer.euroscicon.com/#

Recent thread here may prove interesting to you b/c of location of OP:
viewtopic.php?f=1&t=60858&p=482076&hilit=genomic#p482076

Recent article here which addresses the term "stakeholder" theory in U.S. which applies everywhere = $
https://www.forbes.com/sites/elainescha ... 4cd96b43d4

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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O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: MSI or MSS

Postby O Stoma Mia » Sat Sep 22, 2018 4:09 pm

Here are the 2004 Bethesda guidelines for MSI testing:

Table 2. The revised Bethesda Guidelines for testing colorectal tumours for MSI [3]
Tumours from individuals should be tested for MSI in the following situations:
1. Colorectal cancer diagnosed in a patient who is <50 years of age
2. Presence of synchronous, metachronous colorectal or other HNPCC-associated tumours, regardless of age
3. Colorectal cancer with the MSI-H histology diagnosed in a patient who is <60 years of age
4. Colorectal cancer diagnosed in one or more first-degree relatives with an HNPCC-related tumour, with one of the cancers being diagnosed under age of 50 years
5. Colorectal cancer diagnosed in two or more first- or second-degree relatives with HNPCC-related tumours, regardless of age

Reference: [3] Umar A, Boland R, Terdiman JP et al. Revised Bethesda guidelines for hereditary nonpolyposis colorectal cancer (Lynch syndrome) and microsatellite instability. J Natl Cancer Inst 2004; 96: 261–268.


BUD2016
Posts: 57
Joined: Sat Sep 10, 2016 3:25 pm

Re: MSI or MSS

Postby BUD2016 » Sun Sep 23, 2018 4:21 am

Hi Stu,

My mother was MSS and we had to privately pay for this test on her tumour, which they preserve for sometime in a specialised lab.

When she was tested, Keytruda was not yet approved and even if it has been approved now by FDA , I doubt it will be covered by social security system, so people have to fund it privately and not many can do it.

Best wishes
09/2016: Mom dx/rectal cancer
10/2016: Open surgery. T3N0/Grade 2
11/2016: PET/CT scan shows 5 liver mets in both lobes
11/2016: FOLFOX + Avastin started on her 71st birthday
KRAS gen 2 G13D mutant, BRAF Negative, MSS
03/2017: Oxi stopped after 9th tx, 5FU cntd. CT scans w/ contrast every 2 months - small shrinkage/stable
05/2017: PET/CT progression, started FOLFIRI + AVASTIN
07/2017: MRIs/CT stable
09/2017: MRIs/CT - min progression
09/2017: FOLFIRI + CYRAMZA
11/2017: left us

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O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: MSI or MSS

Postby O Stoma Mia » Sun Sep 23, 2018 5:17 am

As mentioned by others in the posts above, there have been significant developments in the MSI-H / MSS scene since around 2015 or so.

Now, in the United States, ASCO and NCCN are recommending that all colorectal cancer tumors be routinely tested for MSI status, since there may be implications for subsequent therapy choices, particularly in the area of immunotherapy. It's a fast moving field with new changes being announced every year:

https://www.targetedonc.com/news/examining-immunotherapy-treatment-options-in-colorectal-cancer

stu
Posts: 901
Joined: Sat Aug 17, 2013 5:46 pm

Re: MSI or MSS

Postby stu » Tue Sep 25, 2018 3:02 am

Thank you so much everyone . It really makes a difference. Your knowledge is great . I am going to write to the governing body of the NHS to see what their official position now I am better informed and can be more accurate .
Thank you once again .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

WarriorSpouse
Posts: 160
Joined: Tue Aug 16, 2016 9:02 pm

Re: MSI or MSS

Postby WarriorSpouse » Tue Sep 25, 2018 6:08 am

Stu,

My observation of the UK's NHS is that most of their decisions are based on cost benefit analysis as opposed to the American Cancer Center's problem solving analysis. I do not know the NHS like someone who lives in the UK, but I have witnessed that important drugs like Avastin are no longer covered by the NHS there, and must be paid for through private insurance. That is a big red flag to me that it is about cost benefit analysis and not best practices in the UK.

In the U.S., private insurance and donations for research help fund the search for better solutions based results over the cost benefit analysis matrix. Those tests are part of figuring out the best treatment plans for patients. U.S. Social medial services like Medicaid and Medicare also fund this progress, but are not the sole decision makers here, thankfully. I suspect if they were, the U.S. would have similar issued that you are witnessing with the NHS in the UK.

Thank you BS for your links. They are very informative.

This is why major cancer centers should be consulted in the U.S., if possible, when seeking a treatment plan and proper diagnosis. They crave better answers and treatment programs over better cost management of the CRC diagnosis. Knowledge is power and those who crave it know the most and are the most progressive for more aggressive treatments and best practices. I hope the NHS can see this in the near future.

Good Luck to all in seeking more knowledge in this fight.
https://fightcolorectalcancer.org/fight ... i-and-mss/

WS
Spouse of wife 47 years old
10/2014, Stage IV Metastatic CC
Lymph node involvement 12/15, w/ positive PET on para-aortic lymph nodes.
5 cm sigmoid tumor resection as well as positive Virchow lymph node.
KRAS mut, Highly Differentiated, Lynch Negative
Folfox and Avastin 1 YR (Oxi for 5 months) NED 05/2015
Zeloda and Avastin since 01/2016
Chemo break 03/2017, back on Zeloda and Avastin 04/2017.

"...Perseverance is not a long race; it is many short races one after the other."
-Walter Elliot

stu
Posts: 901
Joined: Sat Aug 17, 2013 5:46 pm

Re: MSI or MSS

Postby stu » Tue Sep 25, 2018 7:08 am

Hi ,
On the whole I have no complaints about the NHS as it serves most people well irrespective of income . However I see a group of patients badly let down at the moment and that’s MSI patients . As you correctly point out Avastin was removed but not other targeted treatments which as I understand it still cover patients with MSS . However patients with MSI who would have benefited from Avastin and would possibly benefit from Keytrunda can’t get either which is a big issue as far as I can see . I can get a cancer charity ‘s campaign section to look at it but I want to write with accurate information . I have also heard of some pharmaceutical companies giving on compassionate groups but it gets complicated again as some health authorities won’t administer and some will .
If I have the wrong understanding please correct me as I want to get it correct . When my mum started treatment there was no targeted treatments and there is leverage to put pressure on the system . Avastin suffered as they were not selective enough with who they put on it . One patient was on it and lost it and suffered disease progression thereafter . Lots of work to be done but if I can understand it correctly that one group of patients has been left in a worse position than others then there might be ground s to start raising it .
Any other research links also welcome .
Thank you once again ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

henry123
Posts: 149
Joined: Sun Oct 08, 2017 3:25 am

Re: MSI or MSS

Postby henry123 » Tue Sep 25, 2018 2:42 pm

Please , does someone know what society /organisation can work to push the Canadian government also for immunotherapy options for msi-high cases.
46yo M
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
msi-h Lynch
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver.
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
2/18 2.3
4/18 2.0
Aspirin start
6/18 1.5 CT clear
8/18 1.3
10/18 1.2
12/18 1.1 CT Clear NED
Vegan yoga juicing apricot
Still on opdivo

sandkeeper
Posts: 8
Joined: Tue Dec 19, 2017 4:58 am
Location: London, UK

Re: MSI or MSS

Postby sandkeeper » Wed Sep 26, 2018 11:18 am

I don't post here often, but as a more recent diagnosis than your mother and in the UK, my pathology was tested for MSS/MSI immediately after surgery, although the hospital always referred to it as dMMR/pMMR. This testing may have been related to my stage because it was the determining factor as to whether I would be referred to oncology or not.

The testing took way too long because the "machine is broken" and delayed my entire referral and follow-up unnecessarily, and my surgeon - when explaining what they were testing for - actually got the two mixed up in terms of what they mean for chemotherapy. So on the whole, not particularly reassuring, but they did test for it!
31 year old male, dx Oct 17
Staged IIA post sigmoid colectomy
T3b N0 M0
Oct 18: NED for now
CEA: always 1

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O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: MSI or MSS

Postby O Stoma Mia » Wed Sep 26, 2018 11:58 am

stu wrote:...I want to write with accurate information... If I have the wrong understanding please correct me as I want to get it correct ...

Hi Stu,

I have read your previous posts in this thread, but I still don't quite understand what your main objective is. It looks like you are planning to write a letter to someone or to submit a request to some society, organization or government office, but it is not clear to me what your letter would be requesting. Would you be able to provide a little bit of clarification?

Are you trying to gain access to KEYTRUDA (pembrolizumab) or AVASTIN (bevacizumab) for a specific colorectal cancer patient in the UK?

Are you trying to gain access to KEYTRUDA (pembrolizumab) or AVASTIN (bevacizumab) for any or all colorectal cancer patients in the UK?

Are you trying to gain cost-free access to KEYTRUDA (pembrolizumab) or AVASTIN (bevacizumab) for colorectal cancer patients in the UK (i.e., covered by the national insurance program)?

Are you trying to gain access to KEYTRUDA (pembrolizumab) or AVASTIN (bevacizumab) for any MSI or MSS cancer patients in the UK, regardless of type of cancer diagnosis they might have?

I think it would help if you could provide some additional information on your objectives, because the overall issue could be quite complex, depending on what you are trying to achieve. There are different programs available for insuring access to needed drugs (e.g., compassionate use programs, etc), but these programs vary according to manufacturer (e.g., KEYTRUDA ,AVASTIN) and according to country and applicable government regulations.

I hope you don't mind that I'm asking this, but more information would help. Thank you.

stu
Posts: 901
Joined: Sat Aug 17, 2013 5:46 pm

Re: MSI or MSS

Postby stu » Wed Sep 26, 2018 12:45 pm

Hi .
Avastin is not coming back any time soon for Colorectal patients as it was too broad a remit in terms of funding in the UK . MSI -H patients fell through the net as the targeted treatments that are still available are not suitable for them. . However Keytundra being selected for a small subset of patients would be easier to cost and fight for . Within the Uk our medication is governed by the NICE committee set up by parliament but also we have four separate countries governing health . So the smaller size in some ways helps bring about the ability to influence. Our leading cancer charities have campaigned sections which lobby parliament so if you can get them on board then it might work . It has with other treatments .
There is a current inequality in colorectal cancer depending on your cell type . If Keytrunda was made available it would allow another string to their bow for treatment options . Clinical trials have passed through phase three stage then gone silent .
I was trying to get a feel to see if we are lagging behind as the discussion is currently not happening yet patients are in turmoil as limited treatment options dry up .
Other cancer types are charging ahead so I thought if I could get better informed , especially with positive research of the benefits of Keytrunda then it might be the starting point . However given Avastin is removed I suspect there would be a lot of heal digging .
Also trying to make sure I have a proper grasp of it as a to just not discussed .
Thanks for all your help .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .


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