- opinions, please

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Re: - opinions, please

Postby Jacques » Tue Aug 06, 2019 10:49 pm

NHMike wrote:The genomic stuff is quite complicated. Here is a page which lists Colorectal Cencer tumor mutations and there are well in excess of 100 of them:

The page describes what the mutation is and what it does but the language assumes some level of university biology so it can be difficult to understand but it provides an explanation of what's happening to you on a molecular level.

Some mutations are aggressive - and it would be good for your oncologist to know if you have one of those. Some mutations have targeted therapies. In general, with CRC, you just get 5FU and Oxaliplatin but there are some targeted therapies for some mutations (and sometimes other conditions). Genetic testing (blood test; not a tumor sample) can determine if you have conditions that indicate that some drugs shouldn't be used or they may indicate that targeted therapies can be used.

So it's very complicated stuff and oncologists aren't always up to date on the latest clinical trials.


Mike -
Thank you for posting this. Very informative.

I have one suggestion, though:

When you post a long URL like the one above, could you make sure that you include the URL inside the [ URL] ...[ /URL] tags? This is because there are some browsers out there that cannot parse a long URL like that one without having the tags in place. The troublesome URLs are the long, untagged ones that have a three dot ellipsis in them when they are displayed.

Thank you.

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Re: - opinions, please

Postby NHMike » Wed Aug 07, 2019 8:12 am

Jacques wrote:
NHMike wrote:The genomic stuff is quite complicated. Here is a page which lists Colorectal Cencer tumor mutations and there are well in excess of 100 of them:


Thank you.

The url tags are there though I didn't use the URL button. I can see them in the reply. I also see the ... when I shrink my browser window horizontally. It is possible that a moderator edited my post. I'm using Firefox. I will try to remember to use the button though.
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O/T posting info reply here

Postby CRguy » Wed Aug 07, 2019 8:33 pm

Just as a general comment on posting issues :shock:
There have been no Moderator edits to the original post.

The issue is that the ".aspx" part of the url did not resolve from the posted link and leads to this error page from the Mass General site :
http://targetedcancercare.massgeneral.o ... D-(c-35G-A

from the original link as posted earlier :
http://targetedcancercare.massgeneral.o ... D-(c-35G-A).aspx <<-- .aspx Not highlighted or underlined here which means it has not been recognized as part of the url link

Using the actual BBcode url tags as seen below, allows everything between the tags to be processed correctly as posted below.

Code: Select all


If you wish I can edit the code to get the link resolved ?? ... as this is something which we have done in the past for members
Just PM me.

The posted image linked fine, as the image tags were included in that link.

Code: Select all


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Stage IV A rectal cancer/lung met
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my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Re: - opinions, please

Postby boxhill » Thu Aug 08, 2019 12:48 pm

TinaFish, do you have a copy of your pathology report(s)? If not, get one.

You should also have either a copy of or online access to your radiology reports from scans.

MSS/MSI refers to micro-satellite stability or instability. The usual method of testing is staining a tumor sample for the presence of the proteins produced by 4 genes (which I will not name here, the info is easily accessible) that are responsible for mismatch repair (MMR); that is, fixing cells that mutate. If one or more of the proteins isn't there, it means that one or more of the genes isn't working properly in the tumor cells (there are several possible reasons for this). In that case, the tumor is said to be dMMR, d standing for "deficient." dMMR usually means that the tumor cells will be MSI (there are several levels thereof), meaning that the cancer cells mutate at a fast rate, because the fixing mechanism is broken. If the tumor is dMMR, normally one will have genetic testing on one's blood also to determine whether the defect is isolated to the tumor (sporadic) or present in one's DNA (germline). Generally, sporadic is good news these days (good candidate for immunotherapy) and germline is less so (still a good candidate for immunotherapy, but probably Lynch Syndrome). Being highly mutated makes the cells easier for the immune system to identify and attack them, and--one hopes--kill them.

You, on the other hand, are MSS, which means that your mismatch repair genes are functioning and so there isn't a large amount of ongoing mutation happening. This means you are probably not a good candidate for immunotherapy at this time. Extending immunotherapy to MSS cancers is a very hot research effort right now. Just to complicate things a bit, this may depend on the TMB (tumor mutational burden of the cancer cells). MSS folks can still have a tumor with a comparatively high number of mutations, hence TMB. Some of those people (with TMB perhaps around 12) are now being tried on immunotherapy to see if it might work for them.

I suggest that you do some online reading to get at least an educated layman's grip on some of this stuff. Which, I can assure you, is a kind way of describing mine! :D
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