Anyone doing xelox and xeloda. Please help

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MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Anyone doing xelox and xeloda. Please help

Postby MissMolly » Wed Apr 17, 2019 6:02 pm

Jolene:
Your night sweats and temperature dysregulation could well be correlated to the corticosteroids you are receiving (dexamethasone). Your insomnia and interrupted sleep and heightened energy could also be correlated to the corteocosteroids.

You may want to discuss with your oncologist a dose reduction of steroid (dexamethasone).
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

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juliej
Posts: 3089
Joined: Thu Aug 05, 2010 12:59 pm

Re: Anyone doing xelox and xeloda. Please help

Postby juliej » Wed Apr 17, 2019 6:20 pm

MissMolly wrote:Jolene:
Your night sweats and temperature dysregulation could well be correlated to the corticosteroids you are receiving (dexamethasone). Your insomnia and interrupted sleep and heightened energy could also be correlated to the corteocosteroids.

You may want to discuss with your oncologist a dose reduction of steroid (dexamethasone).
Karen

I agree!

Dex gave me insomnia and a nervous stomach. I often stayed up all night cleaning the house or doing chores because I couldn't sleep. Eventually I asked my onc to remove the Dex from my pre-meds, but you can take a lower dose at first and see if that helps.

Another thing - you might try taking an Ativan (ask your onc for a prescription). It worked really well for me to take one or two tablets right before bedtime. I slept well and it eliminated the nausea I felt every morning caused by the Xeloda.

Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

Jolene
Posts: 142
Joined: Wed Jan 23, 2019 10:17 am

Re: Anyone doing xelox and xeloda. Please help

Postby Jolene » Sun Apr 21, 2019 3:04 am

Hi Stoma Mia - My blood tests are quite comprehensive I believed. My onc has plans in place to check in on all sort of blood work every week including all ones that you have mentioned ! It's looking good so far.

In fact, he doesn't even want to discuss much of cycle 2 until he is sure that all blood work is looking good by the week. I'm in week 2 of my first cycle now !

He has yet to address the extension of infusion time but I'll be sure to raise it up when I see him again this coming week ! It's interesting how extending the infusion time could help reduce the infusion-related symptoms. Hmm..
Dx @ 39 F, married
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Tests/scans all clear
Jan 20 - Test/scans all clear/ Continue to wait and watch

Jolene
Posts: 142
Joined: Wed Jan 23, 2019 10:17 am

Re: Anyone doing xelox and xeloda. Please help

Postby Jolene » Sun Apr 21, 2019 3:29 am

MissMolly wrote:Jolene:
Your night sweats and temperature dysregulation could well be correlated to the corticosteroids you are receiving (dexamethasone). Your insomnia and interrupted sleep and heightened energy could also be correlated to the corteocosteroids.

You may want to discuss with your oncologist a dose reduction of steroid (dexamethasone).
Karen


I had been prescribed with 3 lorazepam tablets to help me tide over the steroid induced insomia for the first half of the week. It kind of helped. Onc did mention that it's due to the steroid that was pumped in. I'm not sure if I want a reduced dose of steroid though as its supposed to help suppressed nausea and other undesirable side effects. I have actually been doing quite well in my first cycle ! I was buzzing with energy for the first 3 days, was even at the gym working out. I kinda suffered only on the 4th - 6th day with exhaustion and strange chest discomfort, not fun but I've been in worse conditions before in my life. By the 7th day, I was actually going on about my normal activity and bouncing around. I had never been so energetic ! When the onc saw me on the 8th day, he was impressed by how well I was coping. To be honest, I'm a little freaked out at how "well" I am doing and even asked if it was normal and if he actually gave me a low dose of oxy to begin with. He said no, it was a normal dose. He also mentioned that the first cycle is usually the worst and subsequent cycles are usually better. So I'm not sure if I wanna get steroid lowered... between insomnia for the first 3 days vs nausea reaction, I guessed insomnia isn't so bad to deal with in the grand scheme of things ? :D

My oncologist had no explanation for the night sweats and body heat that I'm feeling but was wondering if it was related to my early menopausal. I told him that its quite different from menopausal flushes though. He asked me to continue observing and to take my temperature whenever that happens making sure it's not actually a fever ! Saying that, it has stopped after a week. I will observe again for my second cycle.

I'm now into my second week and my body is feeling like it's back to normal. However, I have not undergone and surgery as I'm on WW, so perhaps that plays a part in the way I'm feeling and reacting towards Oxy ? Also, it's only the first cycle. I'm trying very hard not to develop a false sense of security about the way my body is dealing with Xelox !!! :?
Dx @ 39 F, married
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Tests/scans all clear
Jan 20 - Test/scans all clear/ Continue to wait and watch

Jolene
Posts: 142
Joined: Wed Jan 23, 2019 10:17 am

Re: Anyone doing xelox and xeloda. Please help

Postby Jolene » Sun Apr 21, 2019 10:40 am

Miss Molly - I just noted a post by you that was directed to me a few months earlier on another thread regarding how Dexamethasone could be the cause of mood swings ! :shock: :shock: :shock:

I was in an earlier stage of diagnosis and wasn't in the mind frame to take note of it ! I guessed I really should address it with my onc despite giving me the buzz that I like !


Be aware that the corticosteroids you receive as part of your chemotherapy infusions are likely a key component of your mood swings.

Dexamethasone is the corticosteroid more commonly partnered with chemotherapy infusions. Dexamethasone has a long-half life in the body and has a strong effect per unit concentration as compared to prednisone or cortisone.

Corticosteroids are a powerful hormone and have wide-ranging effects on the body. They are not a benign medication.

Corticosteroids are given as part of chemotherapy infusions to quell nausea and to provide an uplift to make the infusion more systemically tolerable. They are also know to cause irritability, anger/rage, and emotional volatility, and insomnia/sleep disruption. Other effects include higher circulating blood glucose levels and higher insulin secretion by the pancreas, often associated with weight gain and characteristic adipose tissue deposits; an uptick in hunger and appetite, especially cravings for carbohydrates and sweets; newfound energy, as if you could clean the entire house in under 2 hours.

Talk with your oncologist about your corticosteroid dosing and whether a dose reduction would be in your favor. There is no one-size-fits-all or mandated corticosteroid dosing.
Dx @ 39 F, married
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Tests/scans all clear
Jan 20 - Test/scans all clear/ Continue to wait and watch

Jolene
Posts: 142
Joined: Wed Jan 23, 2019 10:17 am

Re: Anyone doing xelox and xeloda. Please help

Postby Jolene » Mon Apr 22, 2019 8:17 am

12 days after my very first Xelox cycle, I'm starting to feel tingling sensations on my palms. Got a teeny "shock" on my fingers when I touched chilled water from the tap - it went away in a sec though.

It's still pretty mild but I guessed it's coming !! :|

I have also been experiencing indigestion and uncomfortable abdominal bloating since yesterday ! Is indigestion a normal side effect ? I want to eat more but fear that it might worsen the situation.

Seeing the onc again in 2 days time.
Dx @ 39 F, married
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Tests/scans all clear
Jan 20 - Test/scans all clear/ Continue to wait and watch

margiej
Posts: 91
Joined: Sat Apr 14, 2018 8:46 am

Re: Anyone doing xelox and xeloda. Please help

Postby margiej » Mon Apr 22, 2019 1:12 pm

Hi, Jolene - it doesn't sound like you have much cold sensitivity.. That's great! Usually the cold sensitivity was wearing off a bit after a week or so following the oxy infusion. I definitely had stomach pains, gas, bloating, etc from the capecitabine. Intermittent diarrhea. My Dr prescribed Prilosec for stomach issues but it didn't seem to help much.
Overall, it sounds like you are doing well though!
Margie
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
Clear Colonoscopy 3/17
CT 10/3/17 clear
CT 10/17/18 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
11/18 1.2

Jolene
Posts: 142
Joined: Wed Jan 23, 2019 10:17 am

Re: Anyone doing xelox and xeloda. Please help

Postby Jolene » Wed Apr 24, 2019 11:14 am

margiej wrote:Hi, Jolene - it doesn't sound like you have much cold sensitivity.. That's great! Usually the cold sensitivity was wearing off a bit after a week or so following the oxy infusion. I definitely had stomach pains, gas, bloating, etc from the capecitabine. Intermittent diarrhea. My Dr prescribed Prilosec for stomach issues but it didn't seem to help much.
Overall, it sounds like you are doing well though!
Margie


Hi Margie - I don't have cold sensitivity - YET ! I just got prescribed with Deomperidone today after complaining about my indigestion ! It seemed to work for me after taking 2 tabs today. No pain in the stomach, just plenty of gas and bloating over the last few days !
Dx @ 39 F, married
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Tests/scans all clear
Jan 20 - Test/scans all clear/ Continue to wait and watch

margiej
Posts: 91
Joined: Sat Apr 14, 2018 8:46 am

Re: Anyone doing xelox and xeloda. Please help

Postby margiej » Wed Apr 24, 2019 11:36 am

Hi, Jolene - I also wanted to reiterate what someone else mentioned here... If your infusion is higher up in the arm, it's not nearly as uncomfortable as in the hand. And if the infusion is ever a little painful, the nurse can slow it down and it helps a lot. My infusions were generally 5-6 hours. I always had a great lunch and a healing touch session and a nice nap from the Ativan so the time flew. So glad everything is going well.
Hugs, Margie
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
Clear Colonoscopy 3/17
CT 10/3/17 clear
CT 10/17/18 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
11/18 1.2

Caat55
Posts: 673
Joined: Sat Dec 23, 2017 6:01 pm

Re: Anyone doing xelox and xeloda. Please help

Postby Caat55 » Wed Apr 24, 2019 12:38 pm

Napping during infusion is a great way to spend the time. Dex made me hyper but unproductive. The cold sensitivity increased with each treatment which didn’t help when I experienced a hot flash. Just another notch in the cancer struggle.
Good luck.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19

Jolene
Posts: 142
Joined: Wed Jan 23, 2019 10:17 am

Re: Anyone doing xelox and xeloda. Please help

Postby Jolene » Thu Apr 25, 2019 2:51 am

margiej wrote:Hi, Jolene - I also wanted to reiterate what someone else mentioned here... If your infusion is higher up in the arm, it's not nearly as uncomfortable as in the hand. And if the infusion is ever a little painful, the nurse can slow it down and it helps a lot. My infusions were generally 5-6 hours. I always had a great lunch and a healing touch session and a nice nap from the Ativan so the time flew. So glad everything is going well.
Hugs, Margie


Hi Margie - I asked my onc about extending my infusion time. He didn't seemed to think that I needed it as I was doing okay for my first cycle (2 hour). I only felt the arm ache when I got home and even that, it was only tender for the first 3 days and it very manageable and subsided after that. He said it's usually for those who experienced bad aching that he will extend the infusion for them. I'm seeing him again next week before my second cycle and I will try and push for a longer extension - afterall what harm can it do especially if it can prevent aching of the arm and I have plenty of time to burn these days !

As for doing the infusion higher up in the arm - I will think about it again and ask the doc. Thing is the onc doesn't seemed to think that I needed any kind of adjustment because I haven't been experiencing any terrible aching as yet . However, I don't really wanna to give pain a chance at all if I could avoid it at all !!
Dx @ 39 F, married
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Tests/scans all clear
Jan 20 - Test/scans all clear/ Continue to wait and watch

Rock_Robster
Posts: 450
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Anyone doing xelox and xeloda. Please help

Postby Rock_Robster » Thu Apr 25, 2019 4:50 am

Jolene wrote:3) What was your first infusions like ? I won't be having a port as it's only 6 cycles and I heard of people getting pain from the infusion ! Is this normal and any tips/suggestion to reduce or avoid the pain!

I did 2 cycles of FOLFOX peripherally (due to issues with my port). Others may have said similar, but after my first cycle was pretty uncomfortable we made the following changes which made it a LOT better:

1. Using a larger vein higher up the arm - in the bicep in my case. The nurses are trained to start low and work up the arm (in case one collapses), but you might want to resist this. The forearm was not so comfortable, and bruised up nicely (from the 5FU).

2. Using the largest cannula this vein could take (faster flow, less drug hanging around in the vein)

3. Keeping a heat pack on the vein during the entire infusion (under a light bandage) - keeps the vein warm and dilated and blood moving faster.

4. Staying very well hydrated

With this all done it wasn’t too big a deal, but that said even for 6 cycles I’d still consider getting a port...

Good luck!
Rob
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 - Ileostomy reversed

Jolene
Posts: 142
Joined: Wed Jan 23, 2019 10:17 am

Re: Anyone doing xelox and xeloda. Please help

Postby Jolene » Sun May 05, 2019 10:25 am

Hi all !

Had my second Xelox cycle 2 days ago ! All seems well !

1) Asked for infusion to be extended to 4 hours instead of 2 even though doctor didn't think it was necessary as I coped quite well with the aching in the first cycle. I insisted on a prevention better than cure mindset and doc was happy to let me go ahead with it.

Results: The aching started 2 hours into the infusion and i needed heat pack this time to relieve it. I didn't need anything in the first round. When I got home, I realised it wasn't really the aching that was causing the discomfort but it's was more of the numbness and sensitivity to any touch in the area that resulted in the tenderness. When I got home, I could actually unscrew bottles and squeeze toothpaste which I couldn't do so at all in my first round. So although it hurt more during infusion, there were less tenderness when I got home. It's second day today and only tad bit of numbness is left. I'm happy with my 4 hours infusion rate.

2) Asked to get off Dexamethasone (steroid) - I didn't like the false sense of energy from the first cycle and asked for it to be reduced. I also suspected that it caused me terrible mood swings. We decided to not take the oral forms after infusion but the infusion one has got to stay in order to prevent allergic reactions. I am feeling much better and without the buzz. Seems like a good decision.

3) Inquired about going higher up the arm for the infusion - nurses advised that it's always best to start low. Once they start high, it's challenging to go back down low again due to an already "punctured" vein higher up that may result in side effects and leaks.

4 hours seems like a good time for me to rest and catch up on some reading ! Will continue with 4 hours in my 3rd cycle !

I'm feeling a little woozy today and slept loads. No nause or anything as yet. Hopefully it's staying as it is.
Dx @ 39 F, married
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Tests/scans all clear
Jan 20 - Test/scans all clear/ Continue to wait and watch

Jolene
Posts: 142
Joined: Wed Jan 23, 2019 10:17 am

Re: Anyone doing xelox and xeloda. Please help

Postby Jolene » Wed May 22, 2019 11:12 am

Hi all

Am about to start my 3rd Xelox cycle and have a question regarding infusion time !

In my 1st cycle , I was given a 2 hour IV oxy infusion and didn't felt much pain or tenderness on my arm during that 2 hours. I left the hospital feeling quite okay and the tenderness/pain was felt only when I got home. I couldn't even squeeze a toothpaste or open a jar for about 2 days. It was not fun but I managed. After that, the pain was gone for the rest of the 3 weeks. The tenderness was intense but it was short.

In my 2nd cycle, as per a number of you advised to discuss a longer infusion time. I was given a 4 hour IV infusion this round. However, pain started to set in about 2 hours after the infusion... by the 3rd and 4th hour, I needed a heat pack to relieve the arm. I left the hospital with my arm feeling numbed, not so much of a pain. It was like an intense pins and needles sensation if anyone was was to bump into my arm. Strangely, because it was not so much of pain sensation I could open up jars or squeeze my toothpaste on the same day I got home. This arm numbing sensation lasted for about a week or so and I had to be very cautious about who brushes against me for that whole week. The pins and needles sensation was manageable but it was prolonged into a week instead.

Now, my question is should I revert back to 2 hours or continue to stay at 4 hours ? Time is not an issue as I usually just head home to rest on infusion day. .

When I did my 1st cycle, i didn't have to use any heat pack while infusing but instead the tenderness was intense for 2 days and then gone for the rest of the weeks. The tenderness was intense but short and sweet.

My 2nd cycle of 4 hours seemed to have somehow prolonged the pain into the 3rd/4th hour while infusing, but instead of pain after the infusion I experienced pins and needles sensation for longer than 2 days ! It continued into a week !

Saying all that, I understand that it's accumulative but with only 2 cycles so far... I can't quite figure out any pattern as yet. Should I go back to 2 hours or stay at 4 hours ? :?

Any thoughts and experience to share ?
Dx @ 39 F, married
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Tests/scans all clear
Jan 20 - Test/scans all clear/ Continue to wait and watch

margiej
Posts: 91
Joined: Sat Apr 14, 2018 8:46 am

Re: Anyone doing xelox and xeloda. Please help

Postby margiej » Wed May 22, 2019 1:34 pm

Everyone's experience is different. For me, when the infusion got uncomfortable or painful, that's when they would slow it down and/or give me a heat pack. Maybe you could split the difference and go with three hours and adjust if necessary. The pain was generally less the higher in the arm in a bigger vein. Some infusions made my arm hurt more than others. A heat pad at home was really helpful the first few days after the infusion, too. It sounds like you are doing well otherwise. Are you doing six rounds? You will be halfway done after this! :D
Margie
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
Clear Colonoscopy 3/17
CT 10/3/17 clear
CT 10/17/18 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
11/18 1.2


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