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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: 3787

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: 3787

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!
by Jack&KatiesMommy
Mon May 28, 2018 8:36 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Trying Keytruda Off-Label (MSS with a Twist)
Replies: 41
Views: 3787

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

UPDATE: I had one treatment and 3 weeks later my CEA has gone from 39.4 to 60.1....so I am thinking that Keytruda is not working for me. I had my second treatment but I don't expect it to help. (MY oncologist said it may be too early to make that determination...). Just wanted to update you all on t...
by Jack&KatiesMommy
Mon May 14, 2018 4:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Trying Keytruda Off-Label (MSS with a Twist)
Replies: 41
Views: 3787

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

Bschreibs
I am being treated by Dr. Kemeny at Memorial Sloan Kettering in NYC and by Dr. VanDeusen at the James Cancer Hopsital in Ohio locally. I am getting the off-label Keytruda through the James Cancer Center.
Cynthia
by Jack&KatiesMommy
Mon May 14, 2018 3:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lung mets question
Replies: 4
Views: 296

Re: Lung mets question

Margie: I have never had (nor have I seen others have) symptoms with lung mets even though I have had multiple. However, I think with your CEA where it is (and it looks like it may be a good indicator for you based on y our history) that you probably do not need to worry about lung mets....though I ...
by Jack&KatiesMommy
Mon May 07, 2018 9:10 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Trying Keytruda Off-Label (MSS with a Twist)
Replies: 41
Views: 3787

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

The mutations identified in my cancer are: KRAS G12A AURKA amplification APC E1379 ARFRP1 amplification BCL2L1 ampliification - equivical FANCG E105 GABRAG K173T GNAS amplification SRC amplification TOP1 amplification TP53 R172H ZBF217 amplification Microsatellite stable Tumor Burden TMB Intermediat...
by Jack&KatiesMommy
Mon Apr 30, 2018 3:54 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Trying Keytruda Off-Label (MSS with a Twist)
Replies: 41
Views: 3787

Trying Keytruda Off-Label (MSS with a Twist)

Hi Everyone: I just wanted to start a thread to let you know what I am doing in the event it can help someone else. You can look at my signature for my history...but more recently, in Mayl 2017, after my CEA went up and two lymph nodes showed up on the PET scan I had surgery to remove the lymph node...
by Jack&KatiesMommy
Wed Mar 14, 2018 3:36 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: KRAS Mutation- any one long term NED?
Replies: 21
Views: 2991

Re: KRAS Mutation- any one long term NED?

I am not NED now...but I am inching toward 7 years since my diagnosis. My children were 4 and 8 when I was diagnosed and they are 11 and 15 now. We just keep going at this cancer in as many different ways as we can. (See my signature.) I am KRAS mutant and MSS.

Hang in there!
by Jack&KatiesMommy
Thu Feb 15, 2018 2:24 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 9 months NED after 5 years stage IV
Replies: 15
Views: 1657

Re: 9 months NED after 5 years stage IV

That is FANTASTIC Steve!!!!!!!!!!!
Cynthia
by Jack&KatiesMommy
Mon Jan 22, 2018 3:13 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Update: It's just a matter of time
Replies: 15
Views: 2158

Re: Update: It's just a matter of time

I am so very sorry about your loss. My prayers are with you.
by Jack&KatiesMommy
Fri Oct 20, 2017 1:57 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: ECG Report...Can Anyone Help me Understand It?
Replies: 9
Views: 1123

Re: ECG Report...Can Anyone Help me Understand It?

mariane: I am so happy that you are doing well. I watch for your posts and I am thrilled for you and your boys. :) Thank you for the advice. I did take it to heart. I am scheduled to see a cardiologist on Tuesday to see what if anythign may be wrong with my heart. Gosh, I relaly don't evenm want to ...
by Jack&KatiesMommy
Wed Oct 18, 2017 11:44 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: ECG Report...Can Anyone Help me Understand It?
Replies: 9
Views: 1123

Re: ECG Report...Can Anyone Help me Understand It?

Thank you CRGuy.....I hadn't thought of going back and trying to get a pumologist on baord. That may make sense. I just assumed since I was seeing the pumonary surgeon's team that aspect would be covered. I have made an appointment for a follow-up ECG and will get a pumologist appointment.... Thank ...
by Jack&KatiesMommy
Tue Oct 17, 2017 1:38 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: ECG Report...Can Anyone Help me Understand It?
Replies: 9
Views: 1123

Re: ECG Report...Can Anyone Help me Understand It?

Thank you all sweet friends! No cardiologist ever saw me....and no one ever mentioned the results of this ecg. I just found it in my records this week. I remember them ordering an ekg after I complained of shortness of breath while walking and I remember the ecg....but no one ever talked to me about...
by Jack&KatiesMommy
Tue Oct 17, 2017 9:07 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: ECG Report...Can Anyone Help me Understand It?
Replies: 9
Views: 1123

ECG Report...Can Anyone Help me Understand It?

Hello Everyone: I am not on this site a lot but I try to share what little knowledge that I have and what experiences I have gained through my own hjourney whenever I have a unique perspective. I continue to plod through treatment of various sorts in an attempt to keep this cancer at bay. It has bee...
by Jack&KatiesMommy
Thu Sep 28, 2017 12:39 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: MEDI4736 CLINICAL TRIAL (KEYTRUDA)
Replies: 41
Views: 8690

Re: MEDI4736 CLINICAL TRIAL (KEYTRUDA)

Keep going Rob....youre doing great! A few bumps along the way....hoping htey get the antibiotics and antifungal meds worked out....
Cynthia

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