A series of unfortunate events

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NorseMan
Posts: 8
Joined: Tue Jun 22, 2021 3:55 pm
Facebook Username: Norse Man

A series of unfortunate events

Postby NorseMan » Tue Jun 22, 2021 5:57 pm

Team,

This is my first post, but I have been a long term reader and I really appreciate all the knowledge transfer and supportiveness I have gained from reading everyone's posts... I had my first colonoscopy ever at age 55 (which was the first unfortunate event) and I wish I had a time machine to have done it earlier in my life. So now I try to warn everyone I know to get theirs early, so maybe I can save 1-2 from this disease which effects 1 out of 23 supposedly.

I went from knowing nothing about colon cancer, laying there on the table during the colonoscopy (which i did without anesthesia) and the doctor saying to me while we are watching the TV "I am sorry you have colon cancer", then the nurse coming over to hold my hand during the rest of the procedure, to developing coping strategies for how to live until if and when I go out... (I guess what I came up with was make it easier for everyone I leave behind, make connections, and good memories).

Anyhow, what I am worried about now is other bad decisions (unfortunate events) I have made so far during this, i don't want to call it a journey, maybe I will use a song reference "The Final Countdown" (heard that song at a dawn of the dead, covid-empty mall, after my diagnosis, limping around on a 2020 (the year of the murder hornet) replaced knee, wearing masks and spraying hand sanitizer, newly diagnosed with the big C, shopping for cardigans.)

Second possibly unfortunate event was that I couldn't stand chemo this winter, I call it being trapped alive in a dead body, so I read, read, read articles about that IDEA study and I rang the damn bell at 5 rounds of 8 of Capox. So that could bode ill, if it spreads. I cant feel my fingertips or toes, so maybe it was a good decision as far as neuropathy/quality of life goes.

Third possible unfortunate event was I skipped my Cat Scan on 6/1 and moved it to 7/26 after reading it is the equivalent of 8 years of radiation in one day and they probably wouldnt see anything yet (plus supposedly its about 70% accurate).

So my question for the team: am I a dead man walking due to not taking Stage 3B/C colon cancer seriously enough: not doing enough chemo, and delaying my cat scan? Or does it really not matter anyhow because it's a roll of the dice on outcome? Currently having one last healthy summer, biking, swimming, and hiking, pretending I am normal.

And I know a lot of people on here have it way, way worse than I do...

Thanks for any responses!
Male, 55 @ DX
11/5/20: Colonoscopy, find tumor
11/6/20 CT Scan, no spread seen
11/16/20 CEA 1.2
11/19/20 Left Side Colectomy (4-5" ? removed)
Stage 3B (TNM: pT3, pN1b, cM0), 3 of 19 lymph nodes invaded. Poorly differentiated, 3 tumor deposits, perineural tracking
12/01/20 CEA 1.3
12/01/20 Started CAPOX
03/16/21 Quit Capox at 5 of 8 rounds
05/10/21 CEA 1.6
07/26/21 CEA 1.6
07/26/21 CT Scan, no metastic disease seen, small hepatic hypodensity observed

Sunnycd
Posts: 61
Joined: Fri Feb 26, 2021 10:36 am

Re: A series of unfortunate events

Postby Sunnycd » Wed Jun 23, 2021 12:21 am

Honestly, I do feel it’s a roll of the dice overall. I am fit, eat healthy, exercise, no family history, etc and yet, here I am. I was reading a book on how to avoid cancer and when I read things like “eating a serving of nuts daily decreases your chance of colon cancer by x”, I laughed because by all accounts, if I added everything up, it would have been impossible for me to have cancer, let alone colon cancer. And yet, here I am…Having said that, I do want to take control of my circumstances and do everything possible to give my body a fighting chance.

I see that you had 5 rounds of CAPOX; I had 4 and I couldn’t fathom a 5th one, so kudos to you, even if you didn’t go though the extra 3 cycles. However, I must say that these cycles are MUCH tougher in the winter, and I believe your 6-8 cycles would have been much easier in April and May. But what’s done is done. Enjoy your summer, be ready for your cat scan, and based on the results, which I hope are good, make a plan and stick to it….
DX Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9
07/14/21 colostomy reversal

rp1954
Posts: 1571
Joined: Mon Jun 13, 2011 1:13 am

Re: A series of unfortunate events

Postby rp1954 » Wed Jun 23, 2021 6:31 am

IMO, try to take better blood work every 5-8 weeks for the first year, spreadsheet it, list it here, and decide on some kind of anti-cancer, immune enhancing chemistry, and if you feel uncertain, be early on the "annual" scan. A lot of the blood work will be messed up the first year, but a good blood series actually can start detectably trending sooner if something is wrong. You don't get to make up missing data.

A lot of the problem in the first year CRC followup algorithm is whether they can detect something with perfunctory, unskilled blood tests, lack of blood conditioning, and whether they are willing to do anything short of restarting full blast with Folfili-Avastin or Erbitux. Basically they lose 3-9 months when something goes wrong, and lose surgery windows that were open earlier. And we disagree what those therapeutic seeking responses, could be.

Maybe in your shoes, I would start at 10,000 iu vitamin D3 (check your 25 OH vitamin D levels and maybe consider more supplements. Especially check calcium and magnesium levels and/or take magnesium supplements with higher doses of vitamin D3, maybe even check your vitamin K levels- the test is less common), maybe consider that 1/4-1/2 aspirin, and more supplements designed especially for you. If you're ambitious talk consult either cancer oriented naturopaths, or a more biochemical research oriented one.
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 to almost nothing mid 2018, mostly IV C

User avatar
Green Tea
Posts: 421
Joined: Mon Oct 24, 2016 10:48 am

Re: A series of unfortunate events

Postby Green Tea » Wed Jun 23, 2021 6:58 am

NorseMan wrote:...Thanks for any responses!

    Green Tea wrote:Tips on preventing recurrences (i.e., diet, supplements, etc.).

    There are some tips of this nature in the LifeExtension article shown in the link below. Topics like diets and supplements are discussed in Sections 9 and 10 of that article.

    https://www.lifeextension.com/protocols/cancer/colorectal

    There are several Stage III patients here on this Forum who followed recommendations like these and who have made it through the 5-year follow-up period without any recurrences and who are now continuing on with the same sort of dietary regimen.

    You might want to ask your doctor what he thinks about approaches like this.


Claudine
Posts: 544
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: A series of unfortunate events

Postby Claudine » Wed Jun 23, 2021 10:33 am

Welcome to the forum, Norseman. Although of course I'm sorry about the circumstances that brought you here...

But may I suggest another song for you - for example, Pearl Jam "Alive"? Because you are! Regardless of what brought you to that point. Sunnycd makes an excellent point; sure, there are things one can do to minimize the odds of having cancer, but there's no guaranty, no matter how healthy one tries to be. My husband was diagnosed at 51 and they never found the primary tumor, so a colonoscopy wouldn't have helped. As for stopping oxaliplatin after 5 cycles, I'd say good call if neuropathy was getting out of hand - my husband did all 6 cycles of Xelox, and he now suffers from permanent neuropathy in his feet; I've come across studies that show that getting 4 vs 6 cycles doesn't make much of a difference, if you're going to reap benefits from adjuvant chemo, the first 4 cycles should do it, so there you go, don't beat yourself up.

"Currently having one last healthy summer, biking, swimming, and hiking, pretending I am normal" - YES!!! IMHO exercise is a great booster, giving your body more strength to fight. A friend who works in a large French hospital told me that the onc there started an exercise program to get his cancer patients moving, and he saw immediate benefits. And why the word "last"? My husband has been stage 4 for over 3 years now, and he's riding 20 miles a day and enjoying life, too :)
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: low 3.2, now 81.1
Scan 03/19: Multiple small lung nodules, now gone/calcified
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 09/17/2021: stable

NorseMan
Posts: 8
Joined: Tue Jun 22, 2021 3:55 pm
Facebook Username: Norse Man

Re: A series of unfortunate events

Postby NorseMan » Thu Jun 24, 2021 11:50 am

You guys rock! Thanks for all of that insight and info… One comment I made to a friend today was: The mind is a lot happier thinking it’s going to live, whether it’s true or not, orders of magnitude happier.

Today I am trying to hang my happiness on having a low CEA level all through this, thinking mine may not recur because of that. But reading all the research online, not sure now I can draw that conclusion. I am popping low dose aspirin, swallowing vitamin D, and may get into the mushrooms shortly. We kind of quit eating meat and dairy, but that’s a slippery slope: some sneaks back in sometimes. Trying to reduce sugar but binging occasionally. I guess you all get it: you are healthy until you are not with our sticky friend, cancer.

One more quick question, how long do I leave this port in? I guess until after one CT scan? Or longer? I am not that excited if there are spots somewhere to jump back on the chemo train, I may refuse that and just try to cut them out surgically. I thought I was tough, but I have a visceral reaction to thinking about going back on chemo…

Thanks again!
Male, 55 @ DX
11/5/20: Colonoscopy, find tumor
11/6/20 CT Scan, no spread seen
11/16/20 CEA 1.2
11/19/20 Left Side Colectomy (4-5" ? removed)
Stage 3B (TNM: pT3, pN1b, cM0), 3 of 19 lymph nodes invaded. Poorly differentiated, 3 tumor deposits, perineural tracking
12/01/20 CEA 1.3
12/01/20 Started CAPOX
03/16/21 Quit Capox at 5 of 8 rounds
05/10/21 CEA 1.6
07/26/21 CEA 1.6
07/26/21 CT Scan, no metastic disease seen, small hepatic hypodensity observed

Claudine
Posts: 544
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: A series of unfortunate events

Postby Claudine » Fri Jun 25, 2021 9:01 am

I wouldn’t rush with port removal, unless it causes you discomfort. My husband had his taken out after adjuvant chemo and because he had a recurrence soon after, had to get it back in (although that was a blessing in disguise because he could feel the first one, not painfully but it was not very pleasant, whereas the new one was better placed).
In terms of chemo: like you he found oxaliplatin to be miserable, but his second line (Folfiri and Avastin) was a breeze by comparison. He did 18 cycles (6 months) and has been off chemo for over a year now. Doesn’t mean he won’t need to get back on it, but sometimes « chemo for life » doesn’t mean nonstop chemo; just episodes of it with breaks (that can be long) in between. Every case is unique. And like you said, sometimes recurrences can be zapped with radiation and taken out via surgery.
I hope you manage to keep enjoying your summer, pushing worries to the far back of your mind!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: low 3.2, now 81.1
Scan 03/19: Multiple small lung nodules, now gone/calcified
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 09/17/2021: stable

NHMike
Posts: 2549
Joined: Fri Jul 21, 2017 3:43 am

Re: A series of unfortunate events

Postby NHMike » Sat Jun 26, 2021 6:38 pm

Chemo during the winter is brutal, particularly if temperatures are freezing, it's windy and there's snow around. I think that there has been research to determine optimal number of rounds but I have not looked at results. My oncologist told me that four is minimum, eight is to be sure, six is optimal but this was before a lot more trials. I certainly have put off tests and doctors appointments. I was scheduled July 2020 for a meeting with my surgeon and the hospital automatically cancelled it. I booked another appointment in October but the hospital had a COVID outbreak on one of the wards. So I was going to book for February but then our COVID numbers went through the roof. I finally had it two weeks ago, almost one year late. I'm sure that a lot of people have missed appointments and tests - it's been a really crazy year for patients and hospital staff.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Rock_Robster
Posts: 581
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: A series of unfortunate events

Postby Rock_Robster » Sat Jun 26, 2021 10:03 pm

I won’t add much to the great advice above, except I’d say get the port out when you feel like it. It’s your life and it bothers some people more than others. I had mine out after 16-18 months NED from a stage IV diagnosis which some might say was premature, but I had a clot previously and my hemotologist really wanted me off blood thinners. And I’m glad I did - I feel so much more normal without the constant reminder when I see my chest (I’m a fairly trim dude); I didn’t quite realise how much it was playing on my subconscious. And you know what - if I have a recurrence then I’ll deal with another port placement just like I’ll deal with everything else (or consider Capiri etc).

Good luck for your life mate :)
39M Australia
2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1, Dec-20: 2.3, Mar-21=2.5, Jul-21=3.1
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection
02/20 Ileo reversed
03/20 NED (CT/PET/MRI/scope) - latest scans Jul-21

PainInTheAss
Posts: 673
Joined: Tue Jul 02, 2013 3:08 am

Re: A series of unfortunate events

Postby PainInTheAss » Sun Jul 11, 2021 3:06 am

NorseMan wrote:Team,

This is my first post, but I have been a long term reader and I really appreciate all the knowledge transfer and supportiveness I have gained from reading everyone's posts... I had my first colonoscopy ever at age 55 (which was the first unfortunate event) and I wish I had a time machine to have done it earlier in my life. So now I try to warn everyone I know to get theirs early, so maybe I can save 1-2 from this disease which effects 1 out of 23 supposedly.

I went from knowing nothing about colon cancer, laying there on the table during the colonoscopy (which i did without anesthesia) and the doctor saying to me while we are watching the TV "I am sorry you have colon cancer", then the nurse coming over to hold my hand during the rest of the procedure, to developing coping strategies for how to live until if and when I go out... (I guess what I came up with was make it easier for everyone I leave behind, make connections, and good memories).

Anyhow, what I am worried about now is other bad decisions (unfortunate events) I have made so far during this, i don't want to call it a journey, maybe I will use a song reference "The Final Countdown" (heard that song at a dawn of the dead, covid-empty mall, after my diagnosis, limping around on a 2020 (the year of the murder hornet) replaced knee, wearing masks and spraying hand sanitizer, newly diagnosed with the big C, shopping for cardigans.)

Second possibly unfortunate event was that I couldn't stand chemo this winter, I call it being trapped alive in a dead body, so I read, read, read articles about that IDEA study and I rang the damn bell at 5 rounds of 8 of Capox. So that could bode ill, if it spreads. I cant feel my fingertips or toes, so maybe it was a good decision as far as neuropathy/quality of life goes.

Third possible unfortunate event was I skipped my Cat Scan on 6/1 and moved it to 7/26 after reading it is the equivalent of 8 years of radiation in one day and they probably wouldnt see anything yet (plus supposedly its about 70% accurate).

So my question for the team: am I a dead man walking due to not taking Stage 3B/C colon cancer seriously enough: not doing enough chemo, and delaying my cat scan? Or does it really not matter anyhow because it's a roll of the dice on outcome? Currently having one last healthy summer, biking, swimming, and hiking, pretending I am normal.

And I know a lot of people on here have it way, way worse than I do...

Thanks for any responses!


No, you're not. There is a bit of a roll of the dice, though. The effectiveness of chemo depends on whether your cancer cells are programmed for cell death. If they are, one round of chemo would be enough to wipe them out. They used to give many, many more rounds of chemo and found in studies that fewer and fewer rounds had statistically insignificant differences in results. When I did my chemo, I saw someone on here who was only prescribed 5 rounds. I think there was another one who had 4.

The real tell-tale sign is whether they find cancer in the tissue when they do your surgery. If it's all gone, it's called a complete response. I had trace cancer cells and am cancer-free after 8 years. My oncologist had told me that in his experience, I would be cured and he was right.

All in all, it is waaaay better to believe you will be cured until you have concrete evidence to the contrary than to think you are going to die. I spent 4 months thinking I was going to die, and I was wrong. I had horrible dreams and cried all the time and was depressed and unable to enjoy life for no reason. That was before I talked to my oncologist. I didn't even start my chemo until 4 months after my surgery, which many would tell you increases your chance of a recurrence. Not if you have wimpy-ass cancer, which apparently I did.

This is one reason why 5% who are stage 4 end up disease free years later. The surgery gets the tumor out and the chemo wipes out all of the cells. It does happen for some. I remember reading on here a guy who had stage 4 cancer who quit his job and spent his savings on his bucket list and was still alive 10 years later. You just never know what will happen, so hope for the best and enjoy the life you have right now.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

NorseMan
Posts: 8
Joined: Tue Jun 22, 2021 3:55 pm
Facebook Username: Norse Man

Re: A series of unfortunate events

Postby NorseMan » Sun Jul 25, 2021 10:02 pm

CT Scan in the morning, my first in 8.5 months, first one since original diagnosis before resection and chemo. I would like to move it out further but it may be too late to do that, unless I just don’t go in to the lab. The reason why I don’t want to get it is mainly the huge dose of radiation (8 years of background radiation in one day, 200 x-rays, 1 in 2000 chance of developing a fatal cancer) and I think whatever the results are, it’s unactionable because it’s too early and I am burning a scan.

So it could be clear and they say come back and get scanned again in 6 months (24 years of x-rays in one year). It could be indeterminate and they say possible mets on your liver or lungs and we need a pet scan or biopsy or wait and watch till it grows bigger so we can cut it out. Or it could be bad, then it’s pet scan, chemo to shrink it if it’s in an inoperable location, or just jump on the surgery train.

I guess my point is I don’t have a lot of faith in chemo killing off what would by then be stage 4 cancer. And I can’t stand being on chemo . I guess I would go for one or two slice and dices (surgeries), but that’s a bloody nightmare as well. At some point I would rather go out with a quality of life rather than all hosed up from medical intervention. Currently I feel fine and am exercising and am fairly fit this summer.

So the math on skipping the 8.5 month cat scan is: it’s either clear or not. If it’s clear, I didn’t need it. If not, it’s probably a watch and wait, and I am likely not to do anything much about the recurrence anyhow. So why get zapped before a year?

Thanks.
Male, 55 @ DX
11/5/20: Colonoscopy, find tumor
11/6/20 CT Scan, no spread seen
11/16/20 CEA 1.2
11/19/20 Left Side Colectomy (4-5" ? removed)
Stage 3B (TNM: pT3, pN1b, cM0), 3 of 19 lymph nodes invaded. Poorly differentiated, 3 tumor deposits, perineural tracking
12/01/20 CEA 1.3
12/01/20 Started CAPOX
03/16/21 Quit Capox at 5 of 8 rounds
05/10/21 CEA 1.6
07/26/21 CEA 1.6
07/26/21 CT Scan, no metastic disease seen, small hepatic hypodensity observed

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beach sunrise
Posts: 510
Joined: Thu Mar 05, 2020 7:14 pm

Re: A series of unfortunate events

Postby beach sunrise » Mon Jul 26, 2021 2:26 am

Good luck with your scan. Please keep us updated.
Another thing to mention is your CEA has always been low throughout. Has it been suggested its not a good marker for you? Lots of posts here about alt markers if CEA is not good for you.
There are many many post here about extended bloodwork to monitor for trends that could alert to something before a scan can pick it up. A good ND also might fit in now. If he/she is good they can monitor CRC cancer signaling pathways and help you block them and help you stay as healthy as possible on a deeper level. Life extension is a great source for baseline and consults with their ND's are free.
PSK is important in my opinion along with vitD3 and others, needed for cellular health. My D3 level was 93 before surgery. After surgery it dipped to 42. Been working on it for a year and a half and have it up to 63-64 right now.
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"

NHMike
Posts: 2549
Joined: Fri Jul 21, 2017 3:43 am

Re: A series of unfortunate events

Postby NHMike » Mon Jul 26, 2021 6:02 am

Good luck on the scan.

I recall a CT for diagnosis but just lower body, then a CT upper body afterwards, then an MRI before surgery. Then a CT after 7 months of chemo.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

NorseMan
Posts: 8
Joined: Tue Jun 22, 2021 3:55 pm
Facebook Username: Norse Man

Re: A series of unfortunate events

Postby NorseMan » Mon Jul 26, 2021 10:52 am

Optima 540 ct machine
Male, 55 @ DX
11/5/20: Colonoscopy, find tumor
11/6/20 CT Scan, no spread seen
11/16/20 CEA 1.2
11/19/20 Left Side Colectomy (4-5" ? removed)
Stage 3B (TNM: pT3, pN1b, cM0), 3 of 19 lymph nodes invaded. Poorly differentiated, 3 tumor deposits, perineural tracking
12/01/20 CEA 1.3
12/01/20 Started CAPOX
03/16/21 Quit Capox at 5 of 8 rounds
05/10/21 CEA 1.6
07/26/21 CEA 1.6
07/26/21 CT Scan, no metastic disease seen, small hepatic hypodensity observed

NorseMan
Posts: 8
Joined: Tue Jun 22, 2021 3:55 pm
Facebook Username: Norse Man

Re: A series of unfortunate events

Postby NorseMan » Wed Jul 28, 2021 10:06 am

So I got my first CT scan after resection and chemo, about 8.5 months after my initial one before tumor removal. Scan was clear (I guess, more details below). Went through a lot of feelings. initially it's like: Thank God, I have a future again! (at least a little one). That is a tremendous feeling, up there with falling in love, or winning a race. I was pretty happy.

But, in these series of events, we are all waiting for the other shoe to drop. I know empirically that there is a 30-50% chance of recurrence, and the recurrence is front-end loaded in the next 4 years, meaning sooner rather than later. My Onc agreed with that statement. Probably for some of the old hands on here, a clear CT scan at 8.5 months is nothing and a lot of people have had that and went south afterwards. I definitely am aware. I am also kind of pissed that I got the 8 years of x-rays from the scan for, in my opinion, nothing. I wanted to delay it out to close to a year. I told the Onc that if you don't have cancer going into the CT machine you have it coming out... But he is in the business of scans and chemicals so that doesn't really resonate with him.

Okay, so here is where I could possibly use some insight. Definitely in this life, no one gets out of here alive and by this age, we all have wear and tear on our bodies. The CT scan said I had a borderline prominent Left supraclavicular lymph node that was stable ( was 15x9 mm now 15 x 11 mm). Small amount of residual soft tissue appears within the anterior mediastinum suggesting thymic hyperplasia stable... Tiny right hepatic hypodensity too small to classify and most likely present on previous scan. Borderline splenomegaly measuring 13.1 cm previously 11.9. Small bone island with the left iliac wing is stable.

Let me know if you guys see anything there that I can or should do something about, thank you. And the feeling of intense joy because I am going to be healthy at least a little while longer completely evaporated unfortunately. Will try to get it back!
Male, 55 @ DX
11/5/20: Colonoscopy, find tumor
11/6/20 CT Scan, no spread seen
11/16/20 CEA 1.2
11/19/20 Left Side Colectomy (4-5" ? removed)
Stage 3B (TNM: pT3, pN1b, cM0), 3 of 19 lymph nodes invaded. Poorly differentiated, 3 tumor deposits, perineural tracking
12/01/20 CEA 1.3
12/01/20 Started CAPOX
03/16/21 Quit Capox at 5 of 8 rounds
05/10/21 CEA 1.6
07/26/21 CEA 1.6
07/26/21 CT Scan, no metastic disease seen, small hepatic hypodensity observed


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