Update: First scan since chemo and MSK impact result

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Sunnycd
Posts: 68
Joined: Fri Feb 26, 2021 10:36 am

Update: First scan since chemo and MSK impact result

Postby Sunnycd » Sun Sep 26, 2021 9:49 pm

I had my first 3 month scan since chemo and all is clear. I should be happy, and I am, but if I am honest, I expected it to be clear “for now”. Does anybody have this feeling too? I wasn’t anxious about this scan; I am anxious about the 3rd or 4th scan. It’s like waiting for the bad news to drop, so you can’t quite enjoy the good news till then. To make it worse, my oncologist is so optimistic that instead of scans in 3 months, we will go straight to the 6 month surveillance. Oh, and during this meeting, I found out that my markers are MSS, RAF RAS wild and PIK3CA (also something about above average tumor mutation). I brought up Signatera testing again, and she, again, said, no, no point doing it, and again, I didn’t press her on it.

Oh, on another subject, I am often forgetting stuff. I know about chemo brain, but how long does it last? I know I should have brought it up with my doctor, but guess what? I forgot! :roll:
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; 09/21: 1.5
07/14/21 colostomy reversal
09/24/21 CT clear
MSS, RAS/RAF wild, PIK3CA mutant

Rock_Robster
Posts: 591
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Update: First scan since chemo and MSK impact result

Postby Rock_Robster » Sun Sep 26, 2021 10:23 pm

Chemo brain is soooo complex, and I’m not sure we fully understand it really. In my opinion (and what I’ve gleaned from reading), there’s really at least 3 components to it:

1. Fatigue - related to treatments and surgery, etc.
2. Anxiety & depression - associated with a life-threatening illness diagnosis; and
3. Potential physiological damage to the brain from treatments

All 3 of the above have the potential to affect short term memory and ability to focus. Everyone is different of course, but in my experience #1 can take from 6 months to a year, or longer, to fully recover from. An active lifestyle, exercise and nutritious diet can help.

#2 is also very personal, but can often be helped significantly with counselling/therapy, lifestyle changes, medication, exercise, good sleep patterns, and meditation.

#3 is probably the hardest to really understand, but this is where good management plays a big part. I use my calendar and notes app in my phone, and I write *everything* in it. I also use a shared Google Doc when I’m planning something more complex like a holiday or house move with my wife. I don’t know if this is chemo, age, or just life-related - but it helps!

Good luck,
Rob
Last edited by Rock_Robster on Mon Sep 27, 2021 4:49 am, edited 1 time in total.
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

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O Stoma Mia
Posts: 1691
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: Update: First scan since chemo and MSK impact result

Postby O Stoma Mia » Sun Sep 26, 2021 11:41 pm

Rock_Robster brings up some excellent points. I just have a couple of things to add.

If you're having trouble with anxiety, be careful with anti-anxiety drugs in the benzodiazepine class. They are intended for short-term use only; definitely not for long-term use.

To deal with stress and anxiety it is better to try the range of non-medical approaches to stress reduction first, like exercise, Pilates, meditation, etc.


For memory loss:

Preserving Memory As We Age
https://www.lifeextension.com/magazine/2005/11/atd
Last edited by O Stoma Mia on Tue Sep 28, 2021 1:47 am, edited 1 time in total.

roadrunner
Posts: 168
Joined: Sun Jan 12, 2020 8:46 pm

Re: Update: First scan since chemo and MSK impact result

Postby roadrunner » Mon Sep 27, 2021 9:45 am

I second Rock Robster’s points about chemo brain, and I agree that exercise is a huge plus all around in recovery, both mental and physical. For me, that has meant getting back to running. I have recently ramped up through .5 mile to almost 4, and while I’m not back to my normal
paces or distances (not sure I’ll ever get there, given the ravages of chemo and radiation), I really do feel
pretty close to fine after a good run. Which brings me to your first point . . .

I agree that monitoring for recurrence can be a real challenge psychologically. I have an inherently pessimistic nature, and have never been able to let go of the belief that my cancer will eventually recur and be very challenging (I suppose I’m a bit more high risk than many due to my approach and a couple of lung nodules that we’re monitoring, but I have other good factors, and those nodules were stable at the last scans). But I feel low anxiety about this, and am currently “living my best life” anyway. I’m not exactly sure why, but I think it’s due in part to framing it as a permanent battle in which I will never leave risk behind in the future, but instead just accept it and try do my best to deal with whatever comes. I will admit to some scanxiety around my 3 month scans, but it’s mostly just a day or two. I am by no means a low-stress person under ordinary circumstances—quite the opposite! And I almost feel like I have to dial myself back with some “realism” after my runs (when endorphins are up), to maintain an “accepting” mindset where I don’t get too hopeful. That seems to help me later when driving to those darn scans! (If you don’t get too high, you don’t get too low.)

That’s worked for me so far. Caveats are that I’ve done ok biologically so far, so I don’t know if my “guarded pessimism” approach will work if I face more serious challenges, like a Stage 4 diagnosis (though I’ve had some close calls!) and that I’m really, really pushing the exercise (as a mood modulator). And I firmly believe that one’s psychological approach should be fitted to one’s unique psychological makeup. This is just my experience, but it has kept my mind far from cancer most days of late (though I fully expect another go-round, and likely will until the day I die—I hope of something else : )
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
neoadjuvant chemorad 11/19
4 rounds of FOLFOX July-August 2020
ncCR found 10/20; multiple biopsies negative
TAE 11/20, small amount of tumor removed, lung nodules orig id’d 6/20 stable Nov 2020
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
Stable in 6/28 scan.

Sunnycd
Posts: 68
Joined: Fri Feb 26, 2021 10:36 am

Re: Update: First scan since chemo and MSK impact result

Postby Sunnycd » Mon Sep 27, 2021 10:08 am

Chemo brain is soooo complex, and I’m not sure we fully understand it really. In my opinion (and what I’ve gleaned from reading), there’s really at least 3 components to it:

1. Fatigue - related to treatments and surgery, etc.
2. Anxiety & depression - associated with a life-threatening illness diagnosis; and
3. Potential physiological damage to the brain from treatments


I have no fatigue nor depression. I am much slower at tasks than I used to, though. I have been exercising and meditating more than I have in the past. One thing I have not done much is read (or any brain stimulating activities) but I will go back to to that.

I am also taking notes and records and calendars to keep me on track. Funny thing is that I watched a series on Netflix (Navillera) where the protagonist has Alzheimer and he writes everything down so he won’t forget. So, that wasn’t very good for my anxiety…:)
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; 09/21: 1.5
07/14/21 colostomy reversal
09/24/21 CT clear
MSS, RAS/RAF wild, PIK3CA mutant

Sunnycd
Posts: 68
Joined: Fri Feb 26, 2021 10:36 am

Re: Update: First scan since chemo and MSK impact result

Postby Sunnycd » Mon Sep 27, 2021 10:14 am

(If you don’t get too high, you don’t get too low.)


Roadrunner, everything you said describes my feelings perfectly, specially the line above. It’s all really a fine balance, isn’t it?

Thank you all for the advice.
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; 09/21: 1.5
07/14/21 colostomy reversal
09/24/21 CT clear
MSS, RAS/RAF wild, PIK3CA mutant

User avatar
ginabeewell
Posts: 517
Joined: Wed Oct 24, 2018 10:30 am

Re: Update: First scan since chemo and MSK impact result

Postby ginabeewell » Mon Sep 27, 2021 11:40 am

Worth investigating: my oncologist eventually prescribed Ritalin for my fatigue / chemo brain. It’s a tiny dose (I have to cut the pill in half) but it’s made a world of difference in terms of me being able to function like normally at work vs feeling like I’m slogging through.
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?


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