Quick intro -- diagnosed Friday

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Zackattack
Posts: 40
Joined: Mon Jul 15, 2019 4:28 pm

Re: Quick intro -- diagnosed Friday

Postby Zackattack » Tue Sep 24, 2019 10:03 pm

The two levels that were elevated were
Aspartate Aminotransferase (AST), Plasma 47 U/L [<=37 U/L]
Alanine Aminotransferase (ALT), Plasma 130 U/L [<=55 U/L]

No chemo ever before this blood test at 1pm today, except for taking the Xeloda earlier in the day (11am approx)

Thanks!
Colonoscopy due to occasional blood in stool.
DX: Rectal Cancer, 7-12-19 @ age 36, male
CEA Levels of 3.0, seems to be T1 at first glance (and hopefully forever?).
Moderately differentiated cells. 12 to 15cm from anal verge
7-26-19 --Dr. calls to advise upon rerunning pathology, sm3 depth...
TME surgery scheduled for 8/21/19
Successful surgery and feeling good so far
2/15 Lymph nodes had cancer.
Stage 3A T1cN1M0

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horizon
Posts: 1527
Joined: Tue Apr 12, 2011 10:10 pm

Re: Quick intro -- diagnosed Friday

Postby horizon » Tue Sep 24, 2019 10:18 pm

Zackattack wrote:Having the port was a savior, had to have blood drawn twice to check those weird liver enzymes and the oxaliplatin went in smooth, like a fine cognac.


You'll also use if for CT scans. I didn't like having it initially but it was lifesaver during the whole process for me.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 8 years NED). Is this real life?

Rock_Robster
Posts: 425
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Quick intro -- diagnosed Friday

Postby Rock_Robster » Wed Sep 25, 2019 12:22 am

Zackattack wrote:The two levels that were elevated were
Aspartate Aminotransferase (AST), Plasma 47 U/L [<=37 U/L]
Alanine Aminotransferase (ALT), Plasma 130 U/L [<=55 U/L]

No chemo ever before this blood test at 1pm today, except for taking the Xeloda earlier in the day (11am approx)

Thanks!

Ok thanks. So neither of those levels are exceptionally high for a chemo patient; except the slightly strange part is you hadn’t really had any chemo yet...

I’m no expert; my opinion would be that it warrants investigation but without other symptoms I wouldn’t consider it an emergency. Have you had any other imaging done of the liver (MRI or PET) that would rule out malignancy? The challenge may be that once you’ve had a couple of doses of chemo, the temptation will be to write off any deranged enzyme levels as linked to that.
Male 37; Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed a liver spot
08-11/19 - FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 - Liver resection #2
02/20 - Stoma reversal booked

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Zackattack
Posts: 40
Joined: Mon Jul 15, 2019 4:28 pm

Re: Quick intro -- diagnosed Friday

Postby Zackattack » Mon Sep 30, 2019 1:13 am

Hi All,

Wanted to drop in and provide an update. Been taking Xeloda since Tuesday morning, and had the infusion of Oxaliplatin Tuesday afternoon. Tues/Wed easy days and I pushed myself to go work out at the gym. Thursday the steroid or whatever wore off and the nausea was pretty real. I didn't take any anti-nausea drugs though (because I naturally run constipated), attempted to fix it with marijuana, successfully.

Friday, minor to moderate nausea (5/10) until I tried marijuana at 4pm and erased it almost immediately. Crazy. Friend came from out of town and I was able to eat a lot of the shephard's pie.

Saturday, headache from 3pm-6pm and took an aspirin and tried to nap but it barely helped to close my eyes. It passed so whatever :-) Ended up still having an okay night after that.

Sunday again nausea from when I wake up (2/10), goes away until after dinner, back again from 9pm-12am. Was hard to get food down at 11pm to take the Xeloda.

The pills make me feel almost a bit disassociative. I feel the brain fog / chemo brain for sure all the time. Honestly though, overall much better than expected and hope it continues to be this 'easy'. I realize it will likely get tougher but hopefully, my tools to combat the issues which arise will be better also.
Colonoscopy due to occasional blood in stool.
DX: Rectal Cancer, 7-12-19 @ age 36, male
CEA Levels of 3.0, seems to be T1 at first glance (and hopefully forever?).
Moderately differentiated cells. 12 to 15cm from anal verge
7-26-19 --Dr. calls to advise upon rerunning pathology, sm3 depth...
TME surgery scheduled for 8/21/19
Successful surgery and feeling good so far
2/15 Lymph nodes had cancer.
Stage 3A T1cN1M0

MeAndMine
Posts: 149
Joined: Mon Aug 05, 2019 2:40 pm

Re: Quick intro -- diagnosed Friday

Postby MeAndMine » Mon Sep 30, 2019 12:12 pm

Sounds like you have a plan and things are going well with the things you are trying. It's good that you live where you can use marijuana to help with things, too. It has to feel good to have the tools to combat whatever comes up with treatment. I'm glad you are doing well! Hopefully things will remain steady!
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

MeAndMine
Posts: 149
Joined: Mon Aug 05, 2019 2:40 pm

Re: Quick intro -- diagnosed Friday

Postby MeAndMine » Mon Oct 07, 2019 11:24 am

How are treatments going Zack? I haven't had infusions but with the oral Xeloda, try to remember to keep a good moisturizer on your hands and feet and also it helps to swish with salt water or water with baking soda in it. I use both, just put a spoonful of each in a water bottle and swish it every time I think about it.

Just thinking about you today and hope you are sailing through!
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

NHMike
Posts: 2363
Joined: Fri Jul 21, 2017 3:43 am

Re: Quick intro -- diagnosed Friday

Postby NHMike » Mon Oct 07, 2019 11:28 am

Zackattack wrote:Hi All,

Wanted to drop in and provide an update. Been taking Xeloda since Tuesday morning, and had the infusion of Oxaliplatin Tuesday afternoon. Tues/Wed easy days and I pushed myself to go work out at the gym. Thursday the steroid or whatever wore off and the nausea was pretty real. I didn't take any anti-nausea drugs though (because I naturally run constipated), attempted to fix it with marijuana, successfully.

Friday, minor to moderate nausea (5/10) until I tried marijuana at 4pm and erased it almost immediately. Crazy. Friend came from out of town and I was able to eat a lot of the shephard's pie.

Saturday, headache from 3pm-6pm and took an aspirin and tried to nap but it barely helped to close my eyes. It passed so whatever :-) Ended up still having an okay night after that.

Sunday again nausea from when I wake up (2/10), goes away until after dinner, back again from 9pm-12am. Was hard to get food down at 11pm to take the Xeloda.

The pills make me feel almost a bit disassociative. I feel the brain fog / chemo brain for sure all the time. Honestly though, overall much better than expected and hope it continues to be this 'easy'. I realize it will likely get tougher but hopefully, my tools to combat the issues which arise will be better also.


I'm pretty sure that your surgeon discussed this with you but be careful what you do in the gym with the port.
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

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ANDRETEXAS
Posts: 630
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Quick intro -- diagnosed Friday

Postby ANDRETEXAS » Thu Oct 10, 2019 1:05 am

At some point, you may want to start walking or jogging instead of going to the gym. As time went by, I became more and more tired, but could also determine how far I could walk each time. The main thing is having some type of physical activity in association with how tired you are feeling. Keep up the good work ! You can and will do it. Andre
2014
2/10 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy
2019
3/11 - clean CT
9/23 - Five-year release - Annual visits now !
Next colonoscopy - 2023

ONE DAY AT A TIME !

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Zackattack
Posts: 40
Joined: Mon Jul 15, 2019 4:28 pm

Re: Quick intro -- diagnosed Friday

Postby Zackattack » Mon Nov 11, 2019 2:43 am

Hi All,

Just wanted to give an update. Been doing chemo, on my third round of Xelox (Capox). Side effects are mostly just really annoying, my body seems to be tolerating everything well. Nausea and I'm not interested in any food practically (but i'm eating). Completely not myself, low energy, out of it, but I deal with most of the side effects with Marijuana. Helps ground me.

Oh--the neuropathy this time really hurts. My fingertips feel like painful pricks when it's below 75 degrees or if I try and use them to grab something or hold a screwdriver. Is this normal? Should I ask them to think about lowering dosage for the next treatment?

I've grown averse to checking this site too often, I feel that the thought of cancer is almost always on my mind. Hard to ignore but easier when i'm not on this site everyday. I appreciate all the support. The mental health aspect is the toughest side effect currently. I'm unable to work too much, and I want to give my wife a few days of not even thinking about it but it's so hard to do that.

Going concerns: I have a swollen lymph node under my jawline on and off for like a year+ now. Minor concern but dr's, in essence, laughed it off. Can I insist they scan it when chemo completes?

When is my first scan and colonoscopy typically after I complete chemo? I want a clean bill of health (hopefully forever) but especially for the beginning of my new baby's soon to be life (coming soon, Feb 8th or so!).

All in all, everything is going well. Super glad I have the port. Can't wait to feel myself again soon.
Colonoscopy due to occasional blood in stool.
DX: Rectal Cancer, 7-12-19 @ age 36, male
CEA Levels of 3.0, seems to be T1 at first glance (and hopefully forever?).
Moderately differentiated cells. 12 to 15cm from anal verge
7-26-19 --Dr. calls to advise upon rerunning pathology, sm3 depth...
TME surgery scheduled for 8/21/19
Successful surgery and feeling good so far
2/15 Lymph nodes had cancer.
Stage 3A T1cN1M0

Siti
Posts: 115
Joined: Thu Aug 01, 2019 10:58 am

Re: Quick intro -- diagnosed Friday

Postby Siti » Mon Nov 11, 2019 4:53 am

My husband is on CAPOX as well but with Avastin added to the mix. His side effects are similar to yours — pain in his hands and feet, zero tolerance to cold and fatigue. So far he doesn’t have nausea but has diarrhoea, I’m not sure which is worse! He doesn’t have appetite to eat but he seems to accept drinking smoothies on those days. He applies moisturiser / salve daily to control the peeling of skin and he wears gel pads on his feet when he knows he’ll be going for long walks.

He did his CT scan after the 3rd cycle and we received the results last week. I suppose it’s a little different for you since your outcome is of a curative one. Do hang in there because a large number of Stage 3 patients are cancer free and have a wonderful life a head of them.

Take care!
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

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horizon
Posts: 1527
Joined: Tue Apr 12, 2011 10:10 pm

Re: Quick intro -- diagnosed Friday

Postby horizon » Wed Nov 13, 2019 8:57 am

Zackattack wrote:Just wanted to give an update. Been doing chemo, on my third round of Xelox (Capox). Side effects are mostly just really annoying, my body seems to be tolerating everything well. Nausea and I'm not interested in any food practically (but i'm eating). Completely not myself, low energy, out of it, but I deal with most of the side effects with Marijuana. Helps ground me.

Oh--the neuropathy this time really hurts. My fingertips feel like painful pricks when it's below 75 degrees or if I try and use them to grab something or hold a screwdriver. Is this normal? Should I ask them to think about lowering dosage for the next treatment?

I've grown averse to checking this site too often, I feel that the thought of cancer is almost always on my mind. Hard to ignore but easier when i'm not on this site everyday. I appreciate all the support. The mental health aspect is the toughest side effect currently. I'm unable to work too much, and I want to give my wife a few days of not even thinking about it but it's so hard to do that.


You absolutely need to tell them of all of your symptoms, especially neuropathy. They ended up reducing my Oxi dosage when I started getting it. I don't have any neuropathy symptoms now.

Agree with Andre that some exercise might help when you're feeling up to it.

I understand about checking the site. I had mixed feelings about reading it during my treatment because if I read the wrong thing (a post about someone dying) it would upset me terribly but then I would read a survivor story and get hope.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 8 years NED). Is this real life?

Claudine
Posts: 223
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Quick intro -- diagnosed Friday

Postby Claudine » Wed Nov 13, 2019 11:25 am

I too would recommend paying VERY close attention to neuropathy. It got really bad for my husband during his last two Oxaliplatin infusions (out of 6), which were over a year ago - he hasn't recovered from them yet (and may never??). Knowing what we know now (treatment didn't work), I wish he'd received a reduced dose for those last two, or stopped altogether at 3rd or 4th infusion.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin since 03/19
6.7 cm left adrenal mass 03/19, 3.67 cm 12/19, surgery scheduled for 02/11
CEA since 03/19: high 58, low 3.2, now 7.4
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: 2 calcified granulomas, one 1mm stable nodule

Zod
Posts: 28
Joined: Wed Aug 28, 2019 2:56 pm
Facebook Username: Zod

Re: Quick intro -- diagnosed Friday

Postby Zod » Fri Nov 15, 2019 3:32 pm

You absolutely need to tell them of all of your symptoms, especially neuropathy. They ended up reducing my Oxi dosage when I started getting it.

I tell my oncologist about *everything* that lasts more than a few hours and also about anything briefer that seems significant. I preface this with him by periodically telling him I will alert him to all symptoms so he is OK with that.

He reduced my oxi dose when my hands started going numb when they were wet and cold while I was travelling.

IMO - tell your oncodoc every symptom if he'll listen. Sometimes I'll tell him something that seems insignificant to me and he'll be quite concerned. Oncologists with experience will have seen many patients and can recognize patterns and stuff you won't be familiar with.


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