Almost two years war strategy learning curves

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beach sunrise
Posts: 1027
Joined: Thu Mar 05, 2020 7:14 pm

Almost two years war strategy learning curves

Postby beach sunrise » Wed Jun 23, 2021 12:37 pm

I am going on two years with CRC. Man, its been a learning curve for sure. NED on scans since surgery of the primary but I don't think so because of CEA still over normal range (it is a good marker for me). So far my surgeon is the only one that agrees with me about the possibility.
I have expanded bloodwork every 7-10 days still, scans every 3 months, ND's, onc and surgeon on my team. I do not put all my faith in any one specialist is why I have several at different facilities, ect.
Being aggressive has been the key factor with my case and reminding docs here and there about when its time to look at this or that more closely. Ya, docs are very busy and sometimes things can slip.
I find you have to be very pro-active advocating for yourself to stay ahead and have a good QofL= Don't take NO for an answer. This is war in my mind. Thank you CRguy and rp1954 for giving me the attitude needed to combat cancer for my benefit. I've only had to pull Madea out of me twice sweetly of course, ha. But I did warn my husband once if he saw cops pull up things are not going smoothly and to just go to the police dept and wait for bond amount to bail me out. That day I was either going to get the xeloda rx or go to jail trying to do better than minimum SOC. Goodness! I came out with rx and my husband was so relieved. Best move I have made so far in this war.
I have been digging into scanning equipment and thinking I might get different scanning machines based on availability at the time is why I am getting the run around with rad dept about what machines have been used on me per scan. Some are better than others. May be the reason some blips are noted on one report but not the other. Who knows, just a guess. So, found a facility with a top machine and hoping my case will qualify for the scan. Fingers crossed!
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

rp1954
Posts: 1849
Joined: Mon Jun 13, 2011 1:13 am

Re: Almost two years war strategy learning curves

Postby rp1954 » Thu Jun 24, 2021 9:33 am

Congratulations on your tenacity and improvements.

It is amazing how time just goes by with good support and good formulation without the usual side effects.
Just keep grinding out the data one test at a time, making improvements as possible, or needed.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

Claudine
Posts: 808
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Almost two years war strategy learning curves

Postby Claudine » Thu Jun 24, 2021 11:38 am

Way to go!! Here's to many more years - hopefully with fewer and fewer treatments/additives/etc, as for rp1954.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Lonsurf/Avastin 12/23

User avatar
beach sunrise
Posts: 1027
Joined: Thu Mar 05, 2020 7:14 pm

Re: Almost two years war strategy learning curves

Postby beach sunrise » Thu Jun 24, 2021 12:33 pm

Thanks rp and Claudine.
This board is an invaluable resource. I can pretty much find something that pertains to me for the moment in question.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test


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