All over the place

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beach sunrise
Posts: 726
Joined: Thu Mar 05, 2020 7:14 pm

All over the place

Postby beach sunrise » Tue Oct 11, 2022 2:21 pm

Bloodwork is all over the place. Up, down and all around. Appt with ND asap this Thurs, surgeon appt Friday.
Interesting fact, any time I have had same CEA panel done for different drs at same time they are hardly ever close. Last CEA panel, one was 26.1 and the other was 22, same time/same needle.
Signatera is still negative.
I know I am over the line to stage IV, its just fighting now to get a doc to listen.
I hammer this relentlessly for the best shot and seems drs just block wall it with SOC mindset, watch and wait.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

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beach sunrise
Posts: 726
Joined: Thu Mar 05, 2020 7:14 pm

Re: All over the place

Postby beach sunrise » Thu Oct 13, 2022 11:06 am

ND appt done.
Concentrating on getting IL-8 down again
CTL's lowered by half so get them up again
M1 macophages, get them up again
More bloowork panels Monday to recheck other panels such as ca19-9, AFP, fibrinogin, LDH1-5, ect
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

prayingforccr
Posts: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: All over the place

Postby prayingforccr » Thu Oct 13, 2022 1:35 pm

This is a full time job, for sure.

And we know WAY more about this shit than we ever wanted or expected to.

You know the drill.

List current issues/possible outcomes/possible treatments then choose the course of action with which you are most comfortable.

You and I are similar.

I would ask Dr Christina Boyd to ablate it asap if she would agree and would do systemic thereafter if it looked like there wasnt anything else.

That’s just what might be MY approach.

You seem to be close to the finish line (which is always moving)

Go for the gold!
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 sbrt and immunotherapy failed
12/22 TIL Therapy

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beach sunrise
Posts: 726
Joined: Thu Mar 05, 2020 7:14 pm

Re: All over the place

Postby beach sunrise » Thu Oct 13, 2022 5:15 pm

Hey pccr, she is on my list (and not to far away) along with Loma Linda and now Dr. bott (MSK). Heard today that Bott is out of the box and not necessarily SOC mind thinking. He is a primary lung cancer surgeon but has been known to do other things.
Yep, full time job on top of my other two full time jobs, ha.
Ya, I have thought we are similar too.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

User avatar
beach sunrise
Posts: 726
Joined: Thu Mar 05, 2020 7:14 pm

Re: All over the place

Postby beach sunrise » Wed Oct 19, 2022 9:23 am

CEA is down 4pts in a month. Thank goodness!
Switched some things around, upped some things, changed some things.
Changed the vitamin C to 10g oral (was taking 4g) on the days I don't have IVC 75g
Upped the turmeric. I think its messing with my liver counts
Switched tetrathiomolybdate compound pharm. This one is more potent than the other brand.
IVM every other day
Upped the vitamin E and selenium
Switching PSK brand this week to bring up WBC and other things it helps with
I think that is all I have done so far
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

prayingforccr
Posts: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: All over the place

Postby prayingforccr » Wed Oct 19, 2022 10:47 am

beach sunrise wrote:CEA is down 4pts in a month. Thank goodness!
Switched some things around, upped some things, changed some things.
Changed the vitamin C to 10g oral (was taking 4g) on the days I don't have IVC 75g
Upped the turmeric. I think its messing with my liver counts
Switched tetrathiomolybdate compound pharm. This one is more potent than the other brand.
IVM every other day
Upped the vitamin E and selenium
Switching PSK brand this week to bring up WBC and other things it helps with
I think that is all I have done so far


Full time job.

It’s all I ever think about.

Did you do the consultation about possible ablation?
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 sbrt and immunotherapy failed
12/22 TIL Therapy

prayingforccr
Posts: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: All over the place

Postby prayingforccr » Wed Oct 19, 2022 10:47 am

beach sunrise wrote:CEA is down 4pts in a month. Thank goodness!
Switched some things around, upped some things, changed some things.
Changed the vitamin C to 10g oral (was taking 4g) on the days I don't have IVC 75g
Upped the turmeric. I think its messing with my liver counts
Switched tetrathiomolybdate compound pharm. This one is more potent than the other brand.
IVM every other day
Upped the vitamin E and selenium
Switching PSK brand this week to bring up WBC and other things it helps with
I think that is all I have done so far


Full time job.

It’s all I ever think about.

Did you do the consultation about possible ablation?
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 sbrt and immunotherapy failed
12/22 TIL Therapy


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