Having issues with CAPOX (Xelox)

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WelshIan
Posts: 12
Joined: Wed Feb 24, 2021 3:52 pm

Having issues with CAPOX (Xelox)

Postby WelshIan » Wed Feb 24, 2021 4:28 pm

Hello to all of you,

I have found this forum great for info and advice and now I am here to tell a little about my colon cancer journey so far and will be seeking some advice. the time line so far in sig below but want to share my issues so far.

Started feeling a bit low back in June of 2020, I am a normally fit 51 year old with no other issues, went to my local doctor for a check-up and she did blood tests and my blood levels (Hemoglobin) was 57 normal range about 130, was send directly to hospital for a 5 unit blood transfusion and CT scan. 5cm tumour found in the right side of my colon with some lung densities, had 100% removal and resection on the 9th December 2020, spent 5 days in hospital then discharged home with no issues at all.

The the pathology results for staging stated T3cN2a with 4 lymph nodes of 26 were positive so CAPOX (xelox) 3 months 4 cycles was prescribed

Then in January I had a 2nd chest CT scan to look for the possible metastasis but the CT came back fully clear so they put this down to a slight chest infection - dodged a bullet there....

2nd Feb 2021 was my first cycle and the oxaliplatin infusion went ok but 45 mins after I crashed with Acute respiratory failure, after about 1 hour I was back to normal after a short stay in the ICU...very scary time

On my doctors visit before cycle 2 they said no problems will extend the infusion to 2 hours and stay in for observation so today cycle 2 started and 45 minutes after same thing Acute respiratory failure but this lasted this time for 1hr 40mins. all find again but the side effects from the oxi this time are worse. I must ad that I have had no issues with Capecitabine tablets 4000mgs per day

So should I refuse oxi on cycle 3?

Thanks for reading and letting me share my cancer journy and looking forward to your thoughts
10/20 colon tumour from ct scan / with lung density
11/20 colonoscopy tumour confirmed
12/20 right side colectomy
1/21 pathology staging T3c N2a 4 lymph nodes of 26 posiive
1/21 ct scan - clear
2/21 CAPOX 3 months cycle 1
2/21 CAPOX 3 months cycle 2
3/21 PICC line removed
3/21 Xeloda cycle 3 cea 0.7
4/21 Xeloda cycle 4 4000mg per day CEA 0.4
6/21 Xeloda cycle 8 of 8 4500mg per day
7/21 CAPOX completed
12/21 Ct Scan and full blood work
12/22 1 yr NED
...ongoing

User avatar
Green Tea
Posts: 451
Joined: Mon Oct 24, 2016 10:48 am

Re: Having issues with CAPOX (Xelox)

Postby Green Tea » Sat Feb 27, 2021 9:57 am

WelshIan wrote:... On my doctors visit before cycle 2 they said no problems will extend the infusion to 2 hours and stay in for observation so today cycle 2 started and 45 minutes after same thing Acute respiratory failure but this lasted this time for 1hr 40mins. all find again but the side effects from the oxi this time are worse. I must ad that I have had no issues with Capecitabine tablets 4000mgs per day

So should I refuse oxi on cycle 3?
...

Hello, and welcome to the Forum! I'm sorry to hear that you are having such a rough time with your chemo infusions.

Concerning the question you ask, we are not doctors here, so we cannot give advice on what treatments you should do or not do. That sort of advice should come from a doctor -- preferably an experienced oncologist with a Board-Certification in Medical Oncology.

Nevertheless, there may be a few thoughts that could be shared that might help you in your decision process.

One suggestion would be to examine the official documentation to see what the oxaliplatin manufacturer has to say about the drug, and then to examine the official list of adverse reactions usually reported for chemotherapy drugs.

  1. First, is the package insert published by the drug manufacturer telling what is known about the major Adverse Reactions associated with the drug. In this document, Section 5.1 (Hypersensitivity) and Section 5.5 (Pulmonary Toxicity) may be relevant to what you experienced in your first two infusion sessions.
    https://www.accessdata.fda.gov/drugsatfda_docs/label/2020/021759s023lbl.pdf
    .
  2. Second, is the full list of drug-related Adverse Reactions, for all drugs, sorted by category. (In this list, respiratory adverse reactions are located on page 123):
    https://ctep.cancer.gov/protocoldevelopment/electronic_applications/docs/CTCAE_v5_Quick_Reference_8.5x11.pdf

It should be noted that drug Adverse Reactions are usually coded on a 4-point scale ranging from Grade 1 through Grade 4:

  • Grade 1: (Mild)
  • Grade 2: (Moderate)
  • Grade 3: (Severe)
  • Grade 4: (Life-threatening)

If you look at the Acute Respiratory Distress Syndrome (ARDS) listed on page 123 of the document above, it says that this Adverse Reaction can be coded as either Grade 3 or Grade 4. It is important to note what is required of the doctor if Adverse Reactions are coded as Grade 3 or Grade 4:

For Grade 3 events, the doctor is supposed to suspend further treatment with the drug until the cause of the reaction can be determined and the patient has returned to normal (e.g., "Pulmonary Toxicity: Withhold ELOXATIN until investigation excludes interstitial lung disease or pulmonary fibrosis. (5.5)" . In the case of Grade 4 events, the doctor is required to terminate treatment with the drug immediately and never administer that drug to the patient again.

From what you have said above, your doctor apparently coded your first-round Acute Respiratory Failure as Grade 3, and by the time of the start of your second round he had determined that you were fit enough to have another round as long as the drug was administered at a slower rate (i.e., over 2 hours?). However ... since your second round elicited the same type of reaction as in the first round, obviously something was missing in the underling logic. In other words, it turned out that you were not really fit to go through a second round, even at a slower infusion rate.

So, my own personal thoughts are that the doctor did not do a thorough enough job of diagnosing your pulmonary problem. In retrospect, it looks like he should not have chosen this particular way to deal with your first crisis and with your first admission to ICU. (This is just my personal opinion, and again, I am not a doctor. I am just a patient expressing my personal views.)

boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: Having issues with CAPOX (Xelox)

Postby boxhill » Sat Feb 27, 2021 11:29 am

Great info, GreenTea.

To my knowledge--also not a doctor--the typical length of oxaliplatin infusion is two hours. So your first one seems to have been unusually fast, at least by the standards here. If there are issues with two hours, it can be lengthened up to six hours. Some people have to undergo a desensitization protocol which, if memory serves, involves a hospital stay. (You can look this up.) There is also the question of premeds, some of which are typically intended to minimize nausea and one of which, dexamethasone, is a steroid intended to stave off a reaction to oxaliplatin. If a person seems to be starting a reaction, they may be given benedryl. (This happened to me during my last found of FOLFOX, and I was having a much, much milder reaction than you. Believe me, IV Benedryl knocks you out! :) )

Of course, there are also chemo regimens without oxaliplatin, such as folfiri, and some people take xeloda or have the 5FU/leucovorin infusions without oxaliplatin. (Oxaliplatin adds only a few percentage points to the effectiveness.) And, if you are MSI-H, immunotherapy. (Do you know your tumor genetics?)

If I were you, I would do some reading and discuss these points with your oncologist to see if s/he has a plan in mind. Then you can make an informed decision.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

Rock_Robster
Posts: 1027
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Having issues with CAPOX (Xelox)

Postby Rock_Robster » Sat Feb 27, 2021 8:54 pm

Very good advice above, just to add my experience - I was fine with FOLFOX for 7 cycles, then on my 8th cycle I had a pretty bad hypersensitivity/allergic reaction to the oxaliplatin (BP & sats crash, refractory nausea/vomiting/diarrhoea - overnight in hospital with olanzapine; no ICU).

Our system here is similar but slightly different. Doc said if it was a “moderate” reaction, we could try pre-dosing with IV Benadryl and doubling the infusion time to see if I tolerate it. If still a “moderate” reaction, then we could start a gradual densitisation protocol (ie start with a tiny dose and build up over time).

If it was a “severe” reaction however then protocol was to make sure I never had the drug again, as the next exposure could be catastrophic.

We agreed it was probably at the upper end of a “moderate” reaction (ie I didn’t have anaphylaxis or a heart attack...), but given I was so close to surgery at that point we decided to go ahead with the resection as planned, then finish up my chemo on FOLFIRI.

One other thing to think about could be DPD deficiency (ie a reaction to the capecitabine, not the oxaliplatin). However based on your presentation this seems less likely.

Good luck,
Rob
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

User avatar
CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: Having issues with CAPOX (Xelox)

Postby CRguy » Sat Feb 27, 2021 10:32 pm

Just to add on another bit of info :

I was originally offered FOLFOX adjuvant chemo but declined in favor of just Xeloda (capecitabine), as the increased efficacy was quoted to be only 3-5% at that time.
When I had a recurrence I chose to add Oxaliplatin to infusional 5-FU ( FOLFOX ) as I had not done it before and was doing "pseudoadjuvant" chemo which had less judicious support from the Oncs. I wanted to do everything I could for the recurrence and did the full 12 cycles of FOLFOX
( deemed necessary at that time ! ) If I had the reactions you describe, I would not have continued. JMO

My point, I guess, is that IF the "cure" is worse than the disease then maybe a step back might be in order.
With the kind of side effects / sequela you have recounted ...
personally ... I would not do a follow up oxaliplatin infusion.
again JMO
BUTT I am NOT your doctor, and like others here have stated you DO need to be assertive and proactive in your own defence.
AND get the Docs on board to figure out the issue and PREVENT IT !!!!!

Dexamethasone and Benadryl are pretty standard premeds where allergic / toxic / adverse reactions can be anticipated.

Sending Cheers and best wishes
CRguy on the Journey
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

WelshIan
Posts: 12
Joined: Wed Feb 24, 2021 3:52 pm

Re: Having issues with CAPOX (Xelox)

Postby WelshIan » Sun Feb 28, 2021 6:13 am

I thank you for the welcome to the forum and I fully understand that non of you are qualified doctors that have posted answer, but believe me you have better knowledge of this than I do at this moment in time.

Yes I have taken the premeds before the infusions on both occasions but it seems that this has not helped, I did get a call from my oncologist yesterday and he has said that as of cycle 3 the Oxaliplatin infusion will be suspended as the grade 3 / 4 symptoms is a worry and they are going to do some tests to see what causes the issues.

So for cycle 3 I will be just on the Capecitabine tablets which I handle with no issues, as stated by them I had a 100% successful resection with 4 localize lymph nodes and no spread that the x2 oxi IO have had will already have given the desired effect and the capecitabine will do the rest... here hoping

I will keep in touch to let you know how I go on with the treatment and hopefully can get over the first hurdle in my recovery to a full and happy life.
10/20 colon tumour from ct scan / with lung density
11/20 colonoscopy tumour confirmed
12/20 right side colectomy
1/21 pathology staging T3c N2a 4 lymph nodes of 26 posiive
1/21 ct scan - clear
2/21 CAPOX 3 months cycle 1
2/21 CAPOX 3 months cycle 2
3/21 PICC line removed
3/21 Xeloda cycle 3 cea 0.7
4/21 Xeloda cycle 4 4000mg per day CEA 0.4
6/21 Xeloda cycle 8 of 8 4500mg per day
7/21 CAPOX completed
12/21 Ct Scan and full blood work
12/22 1 yr NED
...ongoing

WelshIan
Posts: 12
Joined: Wed Feb 24, 2021 3:52 pm

Re: Having issues with CAPOX (Xelox)

Postby WelshIan » Tue Mar 23, 2021 1:49 am

Hello all,

Just an update for you with regards to my ongoing CAPOX, after meeting with my oncologist last week they have stopped the infusions of oxaliplatin and have taken out my picc line due to the two adverse reactions that I experienced.

The initial cycles were going to be 3 months 4 cycles but now with the stopping of the IV I am now going to be having 8 to 12 cycles of just Capecitabine, with the change I am quite happy as all the side effects to the oxaliplatin have gone away and with the pills I only have mild ringing in my right ear and this hopefully will go away in time.

Apart from this all my blood work has been stable and no cancer markers were present

Will kepp you updated on how things are going over the next few months
10/20 colon tumour from ct scan / with lung density
11/20 colonoscopy tumour confirmed
12/20 right side colectomy
1/21 pathology staging T3c N2a 4 lymph nodes of 26 posiive
1/21 ct scan - clear
2/21 CAPOX 3 months cycle 1
2/21 CAPOX 3 months cycle 2
3/21 PICC line removed
3/21 Xeloda cycle 3 cea 0.7
4/21 Xeloda cycle 4 4000mg per day CEA 0.4
6/21 Xeloda cycle 8 of 8 4500mg per day
7/21 CAPOX completed
12/21 Ct Scan and full blood work
12/22 1 yr NED
...ongoing


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