Quick intro -- diagnosed Friday

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horizon
Posts: 1515
Joined: Tue Apr 12, 2011 10:10 pm

Re: Quick intro -- diagnosed Friday

Postby horizon » Fri Sep 06, 2019 11:28 pm

Zackattack wrote:My new oncologist was very open to my treatment. She had no preference between Folfox and Capox. I chose the CAPOX because I would rather take the pills for 2 weeks a cycle instead of bringing home things and trying to sleep with machines pumping into my veins. Personal preference. She recommended 3 months of treatment, I asked if we can do 4, she said sure. I think it'll be a fairly aggressive dose. 130 or 135 (can't remember) oxaliplatin and 4000 mg daily of Xeolda. My research using a body surface area calculator shows I'm approx 1.79m2. Shouldn't the dosage be closer to 4300 or 4600mg daily? Would you guys ask to raise the dose or let it be for the first cycle @ 4000?

She is not an integrative oncologist and told me to stop any natural supplements during this treatment, and I will/have. I was hoping to add at least PSK/turkey tail mushroom but trust her judgment. I understand that antioxidants are bad for chemo as we need the cell walls to break down --are there any supplements that are safe to combine with Xelox that I can ask her about? I'm going to continue D3 5000iu.

I'm having the powerport put in on Friday the 13th :wink: and i'll let it heal for 11 days. She said I could just get IV injections but from everyones feedback here, I opted for the port for easy blood draws and Oxal infusions.

Due to my best friends wedding on Oct 12th, I'm doing my start-date of Chemo 9/24 so the wedding will fall on the off week of Xeloda. That's 4 weeks and a few days after my surgery from Aug 21st.


1) I was told to stop all vitamins/supps.
2) 11 days should be more than enough time for you to heal from the port insertion. I'm pretty sure I did chemo the day after I got mine in.
3) Some will disagree but my feeling is you shouldn't be calculating dosages. You're not a doctor (I assume). I left that to the experts but made sure to tell them about any and all side effects. My Oxi and Xeloda dosages both were lowered during my chemo.
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: 345
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Quick intro -- diagnosed Friday

Postby Rock_Robster » Sat Sep 07, 2019 12:02 am

horizon wrote:
Zackattack wrote:My new oncologist was very open to my treatment. She had no preference between Folfox and Capox. I chose the CAPOX because I would rather take the pills for 2 weeks a cycle instead of bringing home things and trying to sleep with machines pumping into my veins. Personal preference. She recommended 3 months of treatment, I asked if we can do 4, she said sure. I think it'll be a fairly aggressive dose. 130 or 135 (can't remember) oxaliplatin and 4000 mg daily of Xeolda. My research using a body surface area calculator shows I'm approx 1.79m2. Shouldn't the dosage be closer to 4300 or 4600mg daily? Would you guys ask to raise the dose or let it be for the first cycle @ 4000?

She is not an integrative oncologist and told me to stop any natural supplements during this treatment, and I will/have. I was hoping to add at least PSK/turkey tail mushroom but trust her judgment. I understand that antioxidants are bad for chemo as we need the cell walls to break down --are there any supplements that are safe to combine with Xelox that I can ask her about? I'm going to continue D3 5000iu.

I'm having the powerport put in on Friday the 13th :wink: and i'll let it heal for 11 days. She said I could just get IV injections but from everyones feedback here, I opted for the port for easy blood draws and Oxal infusions.

Due to my best friends wedding on Oct 12th, I'm doing my start-date of Chemo 9/24 so the wedding will fall on the off week of Xeloda. That's 4 weeks and a few days after my surgery from Aug 21st.


1) I was told to stop all vitamins/supps.
2) 11 days should be more than enough time for you to heal from the port insertion. I'm pretty sure I did chemo the day after I got mine in.
3) Some will disagree but my feeling is you shouldn't be calculating dosages. You're not a doctor (I assume). I left that to the experts but made sure to tell them about any and all side effects. My Oxi and Xeloda dosages both were lowered during my chemo.

Just to add to your data...

1) I was also told to stop all supps except vitamin D
2) I started chemo the same day I had my port inserted
3) No harm in asking your oncologist about the dose, but there are several different methods to calculate BSA and they could yield slightly different dose outcomes. Also they tend to round the dosages; mine worked out to something like 3,200 and he prescribed 3,000.

Hope this is of some help!
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

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Zackattack
Posts: 39
Joined: Mon Jul 15, 2019 4:28 pm

Re: Quick intro -- diagnosed Friday

Postby Zackattack » Sat Sep 07, 2019 1:57 am

horizon wrote:You're not a doctor (I assume). I left that to the experts but made sure to tell them about any and all side effects. My Oxi and Xeloda dosages both were lowered during my chemo.


Absolutely right Horizon -- I should leave the dr'ing to the dr's. I called my Oncologist's office to discuss the dosage and my calculation and the nurse said it can be discussed day of Chemo-- she called back later and asked what number I used to calculate, I used 1250mg/m2. That formula was for without Oxaliplatin in tandem and should be 1000mg/m2 which puts me at 3600 -- 3500mg is my dose; 4 in the morning, 3 in the afternoon. I sheepishly said 'totally understood' and apologized for my misunderstanding :-p

Rock_Robster wrote:Hope this is of some help!

Very much, I appreciate the comment. I stopped everything but D3 and am only considering turkey tail mushroom powder and/or Cimetidine (I still need to do way more research but is it only effective for BRAF mutations?). I don't want to take anything that may disturb the efficacy obviously.

I've heard that taking B vitamins during chemo can reduce neuropathy, thoughts if it's 100% safe?
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

Rock_Robster
Posts: 345
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Quick intro -- diagnosed Friday

Postby Rock_Robster » Sat Sep 07, 2019 2:32 am

Zackattack wrote:I've heard that taking B vitamins during chemo can reduce neuropathy, thoughts if it's 100% safe?

The B-group is strictly out by my onc as they are strong antioxidants. I load up on them during treatment breaks (particularly methylated B5 and B9, plus B12 from memory - can check this if you’re interested) to try to improve neuropathy recovery (on advice of my naturopath).

Cimetidine is another kettle of fish as you’re getting into off-label drug use. My onc won’t prescribe it due to lack of reliable evidence. A Cochrane review concluded there was potential benefit in CRC for patients and minimal risks, but flagged a risk of uncertain interactions during chemo:

https://www.cochranelibrary.com/cdsr/do ... cimetidine

The statement is buried but it reads “Thus cimetidine has the potential to increase toxicity of chemotherapy as well as potentially enhance or compromise its efficacy.” My doc’s general view is that he won’t risk the efficacy of a proven treatment in order to give an unproven one.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

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Zackattack
Posts: 39
Joined: Mon Jul 15, 2019 4:28 pm

Re: Quick intro -- diagnosed Friday

Postby Zackattack » Sat Sep 07, 2019 8:47 pm

Rock_Robster wrote:
Zackattack wrote:I've heard that taking B vitamins during chemo can reduce neuropathy, thoughts if it's 100% safe?

The B-group is strictly out by my onc as they are strong antioxidants. I load up on them during treatment breaks (particularly methylated B5 and B9, plus B12 from memory - can check this if you’re interested) to try to improve neuropathy recovery (on the advice of my naturopath).\



Great to know--thank you for the information. When did you take the B vitamins -- was it after your chemotherapy was fully completed or during the 1 week off on Xeloda cycle?
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

Rock_Robster
Posts: 345
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Quick intro -- diagnosed Friday

Postby Rock_Robster » Sat Sep 07, 2019 9:03 pm

Zackattack wrote:
Rock_Robster wrote:
Zackattack wrote:I've heard that taking B vitamins during chemo can reduce neuropathy, thoughts if it's 100% safe?

The B-group is strictly out by my onc as they are strong antioxidants. I load up on them during treatment breaks (particularly methylated B5 and B9, plus B12 from memory - can check this if you’re interested) to try to improve neuropathy recovery (on the advice of my naturopath).\



Great to know--thank you for the information. When did you take the B vitamins -- was it after your chemotherapy was fully completed or during the 1 week off on Xeloda cycle?

Only during treatment breaks - when I was doing things like resting before surgery, recovery afterward, after radiation etc. I take 5FU rather than Xeloda so it’s only a two-week cycle and he didn’t want me taking anything else during this.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

MetastaticEquilibria
Posts: 41
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Quick intro -- diagnosed Friday

Postby MetastaticEquilibria » Sun Sep 08, 2019 2:13 am

Rock_Robster wrote:
Zackattack wrote:I've heard that taking B vitamins during chemo can reduce neuropathy, thoughts if it's 100% safe?

The B-group is strictly out by my onc as they are strong antioxidants.


Interesting. I had understood that B12 is not an antioxidant, as stated here, for example:

https://www.uhn.ca/PatientsFamilies/Health_Information/Health_Topics/Documents/What_You_Need_to_Know_about_Antioxidants_and_Your_Radiation_Therapy.pdf

However, it seems there may be some evidence of B12 having antioxidant properties after all:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6412369/

Hmm...
M55 Stage 4 Japan
12/16 Tumor rectal/sigmoid jct
1/17 Resect stage 2 T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets stage 4
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad (x/gamma 60 Gy)
1-7/18 FOLFOX+Vectibix
8-9/18 Liver rad (protons 73 GyE)
10-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver rad (protons 66 GyE)
4/19 3 Lung mets
4-6/19 Vectibix
7-9/19 FOLFIRI+Cyramza
9/19 Biliary stent
10/19-now Lonsurf+Avastin
CEA 1.4-223 now 130
CA19-9 2.8-232 now 232
RAS wild MSS MET+ TP53-
UGT1A1*28 homo

Rock_Robster
Posts: 345
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Quick intro -- diagnosed Friday

Postby Rock_Robster » Sun Sep 08, 2019 2:31 am

MetastaticEquilibria wrote:
Rock_Robster wrote:
Zackattack wrote:I've heard that taking B vitamins during chemo can reduce neuropathy, thoughts if it's 100% safe?

The B-group is strictly out by my onc as they are strong antioxidants.


Interesting. I had understood that B12 is not an antioxidant, as stated here, for example:

https://www.uhn.ca/PatientsFamilies/Health_Information/Health_Topics/Documents/What_You_Need_to_Know_about_Antioxidants_and_Your_Radiation_Therapy.pdf

However, it seems there may be some evidence of B12 having antioxidant properties after all:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6412369/

Hmm...

Quite right, and as said he’s super cautious. If it’s not been proven safe, then he says no. Anything with conflicting safety results is also a no. I guess you could call it old-school; he calls himself evidence-based :)
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

User avatar
Zackattack
Posts: 39
Joined: Mon Jul 15, 2019 4:28 pm

Re: Quick intro -- diagnosed Friday

Postby Zackattack » Thu Sep 12, 2019 11:06 am

Port installation tomorrow, mildly nervous again. The idea of something under my skin and semi permanent is freaking me out but I know it's the right decision. What abnormal pains should I look out for after the surgery?

Chemo to begin Sept 24th.
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

Punky44
Posts: 360
Joined: Mon Oct 01, 2018 4:29 pm

Re: Quick intro -- diagnosed Friday

Postby Punky44 » Thu Sep 12, 2019 11:15 am

My mom’s port installation was the first surgery of her life and she was petrified but it really ended up being no big deal. Granted, the idea that something is installed under your skin is a weird thing to deal with, but the port really does make the chemo process a lot easier on the veins. You’ll be glad you have it and then later you can celebrate being de-ported!

They just said watch for it to get hot, red, tender—if it got infected. It healed up pretty quickly. She got hers 10/24 and started chemo 11/5 with no problems. It’s crazy how these dates are seared into my memory.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1; 7/24: 1.9
6/28/19 Reversal and port out

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

annieliz
Posts: 37
Joined: Fri Jul 26, 2019 5:13 pm

Re: Quick intro -- diagnosed Friday

Postby annieliz » Thu Sep 12, 2019 11:21 am

Hi Zack,

I had my port implanted at the Westchester branch of MSKCC. It was a relatively quick and painless procedure - probably took around 25 minutes under light sedation. I was totally asleep and woke up just as they were applying the surgical glue and tape. The whole area was numb, so there was no pain. Then, they keep you for one hour of observation, but since I was awake at the end of the procedure and was doing fine, they let me go after 45 minutes. I did not need any pain killers after the procedure.

I am a side sleeper, mostly on my right side, and when I went to sleep that night I was a bit uncomfortable as I kind of felt the pull of gravity on the port. That was easily solved by putting a pillow under the area. After a couple of nights, that gravity feeling went away. I never felt the need to take any kind of pain reliever because the feeling wasn't painful and subsided each day.

It is a little weird having this device in you, but it really makes the blood draws and infusions so much easier.

Hope this info helps - I am sure you will tolerate this procedure very well!
66 Female
7/15/19 Colonoscopy
7/26/19 DX: Rectal Adenocarcinoma
CEA 8/8/19 - 1.9
8/16/19 begin FOLFOX

MeAndMine
Posts: 123
Joined: Mon Aug 05, 2019 2:40 pm

Re: Quick intro -- diagnosed Friday

Postby MeAndMine » Thu Sep 12, 2019 3:26 pm

Good luck tomorrow Zack! I think you'll be pleased to have your port. I will most likely be getting one by the end of the year. I'm just beginning so I'm not there yet but I have been reading and have read that they are really a good thing to have in the long run. I'm sure you've read about them but the one tip I can remember is to get some numbing cream to use on it before going to get the chemo. You rub some on the skin then cover it with plastic wrap to keep it from wiping off on your clothes. Supposed to make it easier to get things started.
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

User avatar
horizon
Posts: 1515
Joined: Tue Apr 12, 2011 10:10 pm

Re: Quick intro -- diagnosed Friday

Postby horizon » Thu Sep 12, 2019 4:31 pm

Zackattack wrote:Port installation tomorrow, mildly nervous again. The idea of something under my skin and semi permanent is freaking me out but I know it's the right decision. What abnormal pains should I look out for after the surgery?


Totally understandable and I felt the same way. It looks weird when you've got your shirt off but after I was over the soreness of the install I would completely forget about it in day to day life most of the time.
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?

AlexandraZ
Posts: 48
Joined: Fri Aug 23, 2019 8:25 am

Re: Quick intro -- diagnosed Friday

Postby AlexandraZ » Thu Sep 12, 2019 5:50 pm

I thought it was scary at first too! But it's soooo practical for infusions. I was in the room when they installed my boyfriend's port, and it went fairly quickly. Apparently the less fat you have and the more muscle, the harder it is for them to place it. But despite my boyfriend's low fat percentage and large muscle mass it wasn't too bad. He had his first infusion the day after, and that was a little rough. It's definitely a good idea to let it heal a little first, if possible.

I think in the US you sleep through it though, right? That makes it easier also. My boyfriend was awake the whole time and I imagine it is more pleasant to sleep through it.

Best of luck!
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

NHMike
Posts: 2272
Joined: Fri Jul 21, 2017 3:43 am

Re: Quick intro -- diagnosed Friday

Postby NHMike » Thu Sep 12, 2019 5:54 pm

AlexandraZ wrote:I thought it was scary at first too! But it's soooo practical for infusions. I was in the room when they installed my boyfriend's port, and it went fairly quickly. Apparently the less fat you have and the more muscle, the harder it is for them to place it. But despite my boyfriend's low fat percentage and large muscle mass it wasn't too bad. He had his first infusion the day after, and that was a little rough. It's definitely a good idea to let it heal a little first, if possible.

I think in the US you sleep through it though, right? That makes it easier also. My boyfriend was awake the whole time and I imagine it is more pleasant to sleep through it.

Best of luck!


It's conscious sedation. You might fall asleep but it's like you're half awake. The stuff that they give you is Fentynal (that's what they gave me) and it is incredibly powerful stuff so they figure out a formula and I think that they may give you more if it appears to not be enough. You don't feel anything until a few hours later and the bandage they put on you is annoying. Moving your arms up can cause tugging which is annoying.
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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