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by Jack&KatiesMommy
Tue Sep 11, 2018 10:08 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 17
Views: 1852

Re: Keytruda....Working for MSS....Mutation Burden is the Key

When I was seen by my oncologist last week, I mentioned to him the tumor mutation burden and possibility of MSS patient responding to Keytruda. He said he would put me on a study program immediately and I would be tested extensively regarding gene mutation. If I have "right" mutations, I ...
by Jack&KatiesMommy
Fri Aug 31, 2018 9:27 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Really worried. Stage 4 with increasing CEA despite of chemo
Replies: 3
Views: 413

Re: Really worried. Stage 4 with increasing CEA despite of chemo

Do you know if your Mom is MSI or MSS? Have you had any testing done on her mutations? I ask because I was in a dire situation (look at my history. Because I am MSS my oncologist didn't suggest Keytruda since it doesn't normally work for MSS. HOWEVER, when Folfuri stopped working for me, we had my t...
by Jack&KatiesMommy
Thu Aug 30, 2018 8:11 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 17
Views: 1852

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Thanks Dionca, I don’t know why foundation one quoted me more- unless cost has gone up or she quoted me for a different test. Either way I can’t afford it. So my plan is that I will start with getting a test done through a trial at PMH. I’ll speak with my oncologist tomorrow about it. Hoping I can ...
by Jack&KatiesMommy
Wed Aug 22, 2018 12:26 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone with Kras G12V or G12D, NIH trial needs you
Replies: 19
Views: 963

Re: Anyone with Kras G12V or G12D, NIH trial needs you

Hello: Thank you for sharing! Can you explain what you mean about no surgery required? I applied for this trial over a year ago and was told that I needed a solid tumor to harvest in order to participate. (At that time I only had malignant lymph nodes.) Is having a 1cm tumor that is easy to harvest...
by Jack&KatiesMommy
Wed Aug 22, 2018 9:55 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Low Platelets, Surgery, and Chemo Dilemma
Replies: 3
Views: 392

Re: Low Platelets, Surgery, and Chemo Dilemma

Deb:
I am not sure if it would affect platelet count. Mine has been low for years (mine runs in the 80's) and it hasn't changed during the last 4 months on Keytruda.
Cynthia
by Jack&KatiesMommy
Wed Aug 22, 2018 9:46 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone with Kras G12V or G12D, NIH trial needs you
Replies: 19
Views: 963

Re: Anyone with Kras G12V or G12D, NIH trial needs you

Hello: Thank you for sharing! Can you explain what you mean about no surgery required? I applied for this trial over a year ago and was told that I needed a solid tumor to harvest in order to participate. (At that time I only had malignant lymph nodes.) Is having a 1cm tumor that is easy to harvest ...
by Jack&KatiesMommy
Mon Aug 20, 2018 9:19 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 17
Views: 1852

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Boswind: This is excellent follow-up with Foundation One. I hope that others are able to take advantage of this. Foundation One (and my local oncologist) are finding that Keytruda has been working for many patients outside the scope of the typical responders...primarily based on tumor mutation. This...
by Jack&KatiesMommy
Mon Aug 20, 2018 9:08 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Low Platelets, Surgery, and Chemo Dilemma
Replies: 3
Views: 392

Re: Low Platelets, Surgery, and Chemo Dilemma

Deb: Since you are MSS, I would suggest having your tumor tested at Foundation One. If you have at least moderate mutation burden (I had 11 mutations including the KRAS mutation like you)then even though immunotherapy usually doesn't work for MSS patients, it may work for you. I tried this as a last...
by Jack&KatiesMommy
Thu Aug 09, 2018 3:01 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Family friend Stage IV recurrence
Replies: 15
Views: 1534

Re: Family friend Stage IV recurrence

I saw that thread about tumor burden. That's very exciting and great news. I don't have details about our family friend but I hope that there are future developments for people with MSS and moderate tumor burden. For example, my husband's tumor had three mutations which would make him ineligible fo...
by Jack&KatiesMommy
Thu Aug 09, 2018 10:23 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Family friend Stage IV recurrence
Replies: 15
Views: 1534

Re: Family friend Stage IV recurrence

As an alternative, Please see if your friend has had Foundation One testing on her tumor. If she has and it is MSI high OR even if it is not MSI high and it has a moderate to high mutation burden it is very likely that immunotherapy (Keytruda) would work for her. (Take a look at my thread titled &qu...
by Jack&KatiesMommy
Mon Aug 06, 2018 2:40 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 17
Views: 1852

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Such great news! Can someone tell me what this means? I can't tell if he has all of these or just the first two mentioned. This is from MSK-IMPACT: Positive for the following somatic alterations in the clinically validated panel: 1. KRAS 2. TP53 Positive for the following somatic alterations in the...
by Jack&KatiesMommy
Mon Aug 06, 2018 2:34 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 17
Views: 1852

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Cynthia, this is great. Is this something your health insurance will agree to pay for? Great question. Yes, actually my insurance IS covering this treatment even though it is off-label for me due to my MSS status. However, my local oncologist submitted a request along with all of his data as well a...
by Jack&KatiesMommy
Sun Aug 05, 2018 11:29 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 17
Views: 1852

Keytruda....Working for MSS....Mutation Burden is the Key

i wanted to give you all an update on my off-label use of Keytruda (since I am MSS it is not approved for use by me....since it doesn’t generally work for colon cancer patients which microsatellite stable tumors.) HOWEVER, it looks like it is working for me....and here is the reason why (according t...
by Jack&KatiesMommy
Mon Jun 25, 2018 11:36 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Trying Keytruda Off-Label (MSS with a Twist)
Replies: 41
Views: 4549

Re: Trying Keytruda Off-Label (MSS with a Twist)

Great news...and hopefully good news for other MSS patients with a moderate mutation load.....after two treatments of Keytruda...this MSS patient's CEA (and my CEA is very sensitive and very reliable as an indicator of cancer for the last 7 years) went from 60.4 to 39.4 (week 5) and then to 23.8 (we...
by Jack&KatiesMommy
Fri Jun 08, 2018 6:57 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Trying Keytruda Off-Label (MSS with a Twist)
Replies: 41
Views: 4549

Re: Trying Keytruda Off-Label (MSS with a Twist)

UPDATE: two weeks after my second treatment of Keytruda (as an MSS patient with a moderate mutation burden) my CEA has gone from 60.1 down to 39.5!

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