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

Posted: Fri Jun 08, 2018 3:47 pm
by Shana
Great news! Keep those numbers dropping! :D

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

Posted: Mon Jun 11, 2018 1:41 pm
by Capri
I hope that your numbers plummet! They're heading in the right direction--I'm real happy for you. Please keep us posted on how things go, Cynthia. Praying for you!

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

Posted: Mon Jun 11, 2018 8:44 pm
by rp1954
Congratualtions on the CEA decline.

I would still track CA199, LDH, MCV (a pronounced rise is probably desirable if folate replete) and maybe some others on my list to investigate your response and status thoroughly. It is harder to hit what we don't see. My wife would have been backdoored many times by mutated cells with rogue protein expressions if we didn't do this.

What's really damning about poor diagnostics (e.g. CEA only) is sometimes how little it cost us to improve those extra trends over the basic background treatment. e.g. reversing rapidly exponential CA199 cost us one more tiny generic chemo pill where CEA was stabilized; reversing slowly exponential AFP simply cost us extra vitamin C in the IV (in addition to the existing treatment). Other marker combos or images have been solved by one or (lots) more 5 or 10 cent pills, sometimes with more expensive 25-50 cent ones too.

I view any marker (or scan) going exponential like a nuclear device awry, between the China syndrome and full nuclear detonation. If your doctors won't/can't help on panels and markers, pls talk about the numbers here.

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

Posted: Wed Jun 13, 2018 1:09 pm
by orlar
I'm really glad to see your CEA dropping. Keep that trend going!

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

Posted: Mon Jun 25, 2018 11:36 pm
by Jack&KatiesMommy
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 (week 7.). Obviously nothing is certain but this is really good news...and an exciting development for not only myself but other patients that are MSS!

Cynthia

PS rp1954...I am not sure what my other number mean. My CEA has been such a great marker...showing cancer many months before we could ever find something on even a PET scan.

They do not test my CA199

MCV: 95.7 H 95.9 H 96.9 H

LDH: 5/3/18: 182. 5/25/18: 172 6/21/18: 189

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

Posted: Tue Jun 26, 2018 4:40 pm
by Shana
Great news! Very happy to hear that you're responding well and CEA is dropping :)

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

Posted: Tue Jun 26, 2018 4:49 pm
by juliej
Jack&KatiesMommy wrote: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 (week 7.). Obviously nothing is certain but this is really good news...and an exciting development for not only myself but other patients that are MSS!

Wonderful news, Cynthia! It's working!!! :D :D :D

You're right: this is very good news for MSS patients (that would include me). Sending many good thoughts and lots of prayers your way!

Juliej

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

Posted: Wed Jun 27, 2018 1:40 am
by rp1954
Jack&KatiesMommy wrote:...my CEA is very sensitive and very reliable as an indicator of cancer for....years

My wife's CEA is a good marker until it flatlines near its historical baselines. But we got a slowly rising tide off AFP that doubled more than five times during off-and-on pill/IV C reductions. We get roller coaster action off CA199 with treatment changes that no longer go back to baseline on chemo + reduced supplements. The big deal is that we can stop and partly reverse them by adding mild or healthful things to immunochemo that already has components that have been (earlier) used to treat cancers associated with those markers.

A number of Erbitux patients have had dramatic CEA responses but then turned out to have non CEA cancer cells too, or develop unmonitored marker expressions. We reject the lack of extra markers monitoring approach for mCRC.

Of course, there are a lot of oncologists that will tell you CA199 and AFP are not a lot of things for CRC. They would have been my wife's bad luck...

PS rp1954...I am not sure what my other number mean.
MCV: 95.7 H 95.9 H 96.9 H

You'll have MCV in all CBC tests. The peaks and valleys, rises and declines, at dx; before, during, and after treatments have broad chemo activity meanings that we can compare with papers here.

LDH: 5/3/18: 182. 5/25/18: 172 6/21/18: 189

These are in the lowest range of LDH values for mCRC that maybe higher and more meaningful with KRAS mutants and CA199 above CRC medians at dx (~19). This is about mid range for "normal people".

My CEA has been such a great marker...showing cancer many months before we could ever find something on even a PET scan.
They do not test my CA199
The first test level is usually one of the most important ones. For 7-10% of CRC patients, serum CA199 is totally useless after the first value. For everybody else, it has potential uses.

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

Posted: Wed Jun 27, 2018 6:38 pm
by mariane
Cynthia, I am so happy! These are wonderful news for you and other MSSs!!! Thank you for sharing!

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

Posted: Sun Jul 01, 2018 7:47 pm
by dragonpppoe
Great news!

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

Posted: Thu Jul 05, 2018 9:54 pm
by HopeForJesse
Cynthia,
I missed your original post but am glad to have not seen it til now with the better news of your CEA dropping and you responding, Pray that continues and you can return to the ranks of NED again!
Mary

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

Posted: Sun Jul 08, 2018 9:02 pm
by anitaw
So happy Cynthia to see these good numbers. You are always in my prayers!
Anita