5 years coming up soon

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beach sunrise
Posts: 1058
Joined: Thu Mar 05, 2020 7:14 pm

5 years coming up soon

Postby beach sunrise » Sun Apr 21, 2024 2:37 pm

In August it will be 5 yrs since dx. SOC was barbaric mentally and physically to me. I have no regrets making a detour from SOC. Having mets show up eventaully 3 1/2 into this fight was no surprise. I still have cancer floating around somewhere, no definitive on where yet. CEA sits at 7.0.
I feel great. No loss of lung function after met removals.
High dose capecitabine daily and targeted supplements was the game changer for me.
I thank all of you for the shared experiences. It has helped and continues to help me tremendously!
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

Pagola44
Posts: 349
Joined: Mon Jul 03, 2023 7:57 pm

Re: 5 years coming up soon

Postby Pagola44 » Sun Apr 21, 2024 5:29 pm

Curious why do you say mets showing up was no surprise?
29m Male.
DX: CC, Right Hepatic Flexure, 4cm, T3, G2, M0
Stage III3B , Positive lymph nodes: (2/20)
Baseline CEA value: 1.98
LVI and PNI: absent
Surgical margins: clear
No lynch Syndrome or MSI
Primary surgery type: Laparascopic

skimom
Posts: 80
Joined: Fri Mar 17, 2023 12:24 pm
Location: Oregon USA

Re: 5 years coming up soon

Postby skimom » Sun Apr 21, 2024 6:29 pm

You are such an inspiration beach sunrise!! I am so sorry that you got cancer but so thankful for how you have blessed all of us with what you have learned & experienced.. I truly believe God uses us all to help each other in some way and you are surely helping me in still believing that.


So congratulations on 5 years of beating this nastiness down!! With you reaching out and helping encourage and teach I am looking forward to many more of us being able to beat it down for 5+ years with you!!
47yo F at DX
DX 12/11/22 Stage IV (liver & lung mets) KRAS PIK3CA
12/15/22 Primary tumor removed from Transverse Colon (4.3x4.0x0.6cm G2 3/15 lymph nodes. Clear margins)
01/06/23 started Folfox (10 cycles)
Initial CEA 5608
CEA after 4 rounds 1319
CEA after 6 rounds 427
CEA after 9 rounds 95
HAI pump installed 06/20/23
Start FOLFIRI and FUDR 07/05/23
CEA down to 37
31
21
18
9/2023 Switch back to FOLFOX due to new lung nodules
11/23 FOLFOX fail CEA up to 62

User avatar
beach sunrise
Posts: 1058
Joined: Thu Mar 05, 2020 7:14 pm

Re: 5 years coming up soon

Postby beach sunrise » Sun Apr 21, 2024 8:10 pm

Pagola, expanded blood panels show it long before a scan will.
Skimom, thank you for all the support. I am so happy you have extra support and searching for things to help like the histotripsy (its also in my back pocket just in case). Its always good to plan ahead for different scenarios that could show up and be able to work faster on it.
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: 1861
Joined: Mon Jun 13, 2011 1:13 am

Re: 5 years coming up soon

Postby rp1954 » Mon Apr 22, 2024 11:58 am

Four years on ADAPT +++ / ++++ with an anti-circulatory continunity, range, improvements, and lifestyle that your would be Folfiri-mab dispensers can only envy.
Congratulations on pulling out of the familiar spiral that was forming after Folfox failed you.

beach sunrise wrote: Having mets show up eventually 3 1/2 [yrs] into this fight was no surprise.
....Pagola, expanded blood panels show it long before a scan will.

The mets were there, in an ambiguous range for a while on your scans. Luckily you finally got a decisive opinion from a more highly experienced group of specialized doctors in Coswig's lung specialty hospital that tightly align their milder Rolles laser procedures' results on smaller mets, iffy to other groups. Other groups are stuck with a scan and experience base from smaller surgical windows with later, more drastic surgeries on larger, more defined mets, if the window doesn't close on them.

beach sunrise wrote:Pagola, expanded blood panels show it long before a scan will.

In fairness, beachsunrise and my wife have the added natural advantage of faaaaaar less distortion in their blood labs from their [chrono-immuno]chemo, so their labs' long range sensing capabilities make scans less critical and less diagnostically "lumpy".
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

User avatar
beach sunrise
Posts: 1058
Joined: Thu Mar 05, 2020 7:14 pm

Re: 5 years coming up soon

Postby beach sunrise » Mon Apr 22, 2024 1:13 pm

Thank you, Rp for support and believing in me that it was possible to stir down the road less taken. Yes, one met was there at dx but just sitting there at 3-4mm but was told its nothing at this point and "could" be debris (inhaled) or scar tissue. Mhmmm, then 3 1/2 yrslater it ws still there plus 3 more small 5mm. I am so glad I listened to my gut instincts!
My oncologist wasn't so sure about what I wanted to try but gave his approval 4 yrs ago. Most recent appt with him he said he didn't think cancer will kill me in two life times. All I could say was thanks in taking the chance with me to see if it works.
Getting spreadsheet updated to send to Germany and man I wish I had kept up with it this past year. Live and learn!
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

Pagola44
Posts: 349
Joined: Mon Jul 03, 2023 7:57 pm

Re: 5 years coming up soon

Postby Pagola44 » Tue Apr 23, 2024 3:22 am

beach sunrise wrote:Thank you, Rp for support and believing in me that it was possible to stir down the road less taken. Yes, one met was there at dx but just sitting there at 3-4mm but was told its nothing at this point and "could" be debris (inhaled) or scar tissue. Mhmmm, then 3 1/2 yrslater it ws still there plus 3 more small 5mm. I am so glad I listened to my gut instincts!
My oncologist wasn't so sure about what I wanted to try but gave his approval 4 yrs ago. Most recent appt with him he said he didn't think cancer will kill me in two life times. All I could say was thanks in taking the chance with me to see if it works.
Getting spreadsheet updated to send to Germany and man I wish I had kept up with it this past year. Live and learn!


Sorry you've probably explained this somewhere but what exactly confirmed that it was malignant (the lung nodules?)
I've got a bad gut feeling about my lung specs as well
29m Male.
DX: CC, Right Hepatic Flexure, 4cm, T3, G2, M0
Stage III3B , Positive lymph nodes: (2/20)
Baseline CEA value: 1.98
LVI and PNI: absent
Surgical margins: clear
No lynch Syndrome or MSI
Primary surgery type: Laparascopic

User avatar
beach sunrise
Posts: 1058
Joined: Thu Mar 05, 2020 7:14 pm

Re: 5 years coming up soon

Postby beach sunrise » Tue Apr 23, 2024 12:29 pm

Pagola, after Germany reviewed all my records starting at day 1 of dx. The evaluation was 2 are most definitely mets but they will take all 4. I never had a biopsy but their expertise confirmed it.
If you are worried then contact them and send all your records for review to them for peace of mind or confirmation of mets. They are top tier lung surgeons.
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

Pagola44
Posts: 349
Joined: Mon Jul 03, 2023 7:57 pm

Re: 5 years coming up soon

Postby Pagola44 » Tue Apr 23, 2024 5:25 pm

beach sunrise wrote:Pagola, after Germany reviewed all my records starting at day 1 of dx. The evaluation was 2 are most definitely mets but they will take all 4. I never had a biopsy but their expertise confirmed it.
If you are worried then contact them and send all your records for review to them for peace of mind or confirmation of mets. They are top tier lung surgeons.


Ok thanks I will look into this afte my next scan
29m Male.
DX: CC, Right Hepatic Flexure, 4cm, T3, G2, M0
Stage III3B , Positive lymph nodes: (2/20)
Baseline CEA value: 1.98
LVI and PNI: absent
Surgical margins: clear
No lynch Syndrome or MSI
Primary surgery type: Laparascopic

User avatar
Green Tea
Posts: 467
Joined: Mon Oct 24, 2016 10:48 am

Re: 5 years coming up soon

Postby Green Tea » Tue Apr 23, 2024 9:40 pm

1. Can lung metastases be removed by laser?

The first step is to send a brief history and copy / CD of a recent chest CT to Dr Rolle at:

    Dr. Axel Rolle,
    phone 0049 352365102,

    Fackkrankenhaus Coswig GMbH, Neucoswiger Straße 21,
    Coswig / Dresden D-01640 Germany.

https://www.karinaeide.com/lung-laser-tumor-resection-dr-rolle

User avatar
beach sunrise
Posts: 1058
Joined: Thu Mar 05, 2020 7:14 pm

Re: 5 years coming up soon

Postby beach sunrise » Wed Apr 24, 2024 5:24 pm

Dr.Rolle is retired. If you contact them it would be Dr. Kern as the contact.
Be sure to have ALL records; bloodowrk, treaments you have undergone (chemo and any other meds). path report, scans. Have them all in order by date so they don't have to sift, its time consuming.
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

User avatar
beach sunrise
Posts: 1058
Joined: Thu Mar 05, 2020 7:14 pm

Re: 5 years coming up soon

Postby beach sunrise » Fri Apr 26, 2024 4:51 pm

ND appt was good. No change in plan yet. PGE2 test and a few others are due. Those will tell if plan change is needed.
I also contacted the Burzynski Clinic in Houston about their amino acid/ peptide therapy. We shall see what they say.
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: 1861
Joined: Mon Jun 13, 2011 1:13 am

Re: 5 years coming up soon

Postby rp1954 » Sat Apr 27, 2024 10:49 am

beach sunrise wrote:I also contacted the Burzynski Clinic in Houston about their amino acid/ peptide therapy. We shall see what they say.

I have watched Burzynski from the beginning, from an exotic 1970s, hopeful new technology by a young Polish emigre', launched in controversy with the medical powers that be. Whatever bright promise he had as a young researcher then, long ago diverted into a marketing and legal machine, largely stuck on a 1970s research possibility, consuming large amounts of cash with no therapeutic advantage for CRC.

BRI has had over 40 years to provide some kind of useful stats or details of success, where I'm pretty broad minded. Oncology in CRC has progressed a great deal since the 1970s, despite many its shortcomings that we discuss here. For CRC, Burzynski's published claims of results simply have not kept up as an interesting alternative offer, much less garnered a credible compelling case. Whatever slight, marginal success he may (or not) of had with brain cancers, it doesn't translate in CRC both in terms of benefit, and side effects.

If I was interested in his chemistry as an oral supplement, I'd still get the supplement and medical support from somewhere else at the first $ required.
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

User avatar
beach sunrise
Posts: 1058
Joined: Thu Mar 05, 2020 7:14 pm

Re: 5 years coming up soon

Postby beach sunrise » Sat Apr 27, 2024 1:36 pm

You read my mind, Rp!
I am just curious about the supplement phenylbutyrate and another one that I can't think of the name at the moment. I take butyrate so interested in the phenylbutyrate and difference between the two..
The amino-care supplement he suggests has everything I take seperately at much higher dosage. So, that one is not an interest.
I've been digging for CRC patient stories but haven't come up with any so far. Now I know why, thank you.
The clinic emailed back yesterday needing more information so will call them Monday.
Like you pointed out the cost is really a big factor depending on what it is.
Update: Just found on the net a good explaination between the two butyrates. They have totally different mechanisms of action. Burzynski Clinic probably doesn't have anything to offer for me.
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

zephyr
Posts: 372
Joined: Thu Aug 18, 2016 7:31 am

Re: 5 years coming up soon

Postby zephyr » Tue Apr 30, 2024 10:40 am

Congrats!
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin


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