Anyone doing xelox and xeloda. Please help

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Jolene
Posts: 180
Joined: Wed Jan 23, 2019 10:17 am

Re: Anyone doing xelox and xeloda. Please help

Postby Jolene » Tue Apr 09, 2019 10:16 am

betsydoglover wrote:1) Did I work? Took Xelox + Avastin. Infusions on Mon every 3 weeks - Xeloda 14 days on / 7 days off. I went to work on Tuesday post infusion - might have shortened my day a little but I can't remember. Skipped work on Wed. Worked about half time from home on Th/Fr. Not sure if some of your job can be done from home. Went to the office the rest of the 3 weeks (mostly), but sometimes took a day off if I felt like crap.
...............


Hi Betsy - thank you for sharing your detailed experience ! Just what I needed to understand the specifics !! I just returned from my oncologists today and ready to start tomorrow !!! It's amazing you could still work the day after as I was told the first 3 days will hit the hardest but then again it depends on the individual isn't it !!

I was not expecting the cold sensation from the first cycle but will take note of it !! Thanks again !
Dx @ 39 F on WW managmeent
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 - WW in place (12 weeks)
Mar'19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr - CCR, surgery on hold. 6 cycles of Xelox.
Aug - 6 cycles of Xelox completed
19 - Flex sig, biopsy, PET/MRI
2019 - 2023 - Every 6 mths - Full scope / Flex sig / biopsy, PET / MRI / CT every 6 months
Dec 23 - All clear 5 years on ! Thank god !

Jolene
Posts: 180
Joined: Wed Jan 23, 2019 10:17 am

Re: Anyone doing xelox and xeloda. Please help

Postby Jolene » Tue Apr 09, 2019 10:32 am

Hi Stoma Mia - Thank you once again for the specific details !!! I have been reading up on the links you posted in the other boards but these are exactly the starter specifics that I'm looking for which you have once again helped answer ! Thank you !

I am having my infusions on Weds (tomorrow)! I was told that I will be given immune booster self-jabs over the weekend ! :shock: The oncologist said any allergic reaction will be caught on the spot at the clinic. My whole infusion + preparation will apparently take up 4 hours in total. Another shock ! :shock: I thought it would be 2 hours top ! :X

Good idea on the recording bit - I will bring my pad and writing materials then !

Thank you for all the other tips too ! Will keep them in mind. I feel a little more reassured knowing the details and specifics !!

I had very little side effects with Xeloda in the first CRT round so hopefully it stays the same, I'm just much more nervous with the oxaliplatin !

O Stoma Mia wrote:
First of all is the issue of you first infusion. I hope your infusions are on Wednesdays, and not on Fridays. Friday is the worst possible day to have the first infusion, because if you were to have a bad reaction it may appear on Saturday or Sunday when the infusion center is closed and no one is around to help you. The first infusion is the most important of all, because this is where they are supposed to be monitoring your vital signs constantly in case you go into anaphylactic shock. In preparation for your first infusion be sure to have a complete list of any medications or over-the-counter preparations that you have been taking, because they will need to know if you have been taking anything that is incompatible with the medications you will be given. There are also certain foods and beverages you should avoid because they don't mix well with the meds you will be taking.

I would suggest that you come with a pencil and pad of paper to write down the technical names of all meds you will be given. Each time they put something in the IV tube, ask what it is and what it is for, and write it down so that you can refer to it later if necessary. Some of the products they use are for flushing out the IV line. Other possible products might be anti-nausea drugs or antihistamines to prevent allergic reactions. Other products might be vitamins to facilitate the action of the chemo. You should keep track of everything they are giving you so that if there is a problem later on you have this information at hand. Also, I think you should record how long each different phase of the infusion takes so that you have some basis for comparison each time you go in for an infusion.

Be sure your arms are washed thoroughly before going to the infusion center in order to avoid having an infection around the IV injection site. Before they start the infusion, be sure that the IV and canula are firmly taped to your arm so that they can't be jerked loose during the session. Also, before the session starts, ask to go to the toilet one last time so that you don't have to interrupt the infusion session to go to the toilet while hooked up with the IV.

When they give you a prescription for medication to take after you go home, be sure to write down the name and what it is for, and be sure to take the medication on schedule as prescribed. For taking the Xeloda pills, be sure to take them after eating a meal, as prescribed. Don't skip any meals or Xeloda administrations due to sleeping right through the mealtime.

Be sure to eat well and keep properly hydrated. If you don't drink enough water it can cause kidney problems, like kidney stones or bladder stones.

Be sure to change your sheets and pillowcases often, as well as having clean clothes, clean socks. Also, you need to maintain good toenail and fingernail hygiene, in order to avoid infections and other problems, such as losing toenails due to hand-foot syndrome. Be sure to keep the floors in the house clean because grit and sand is very painful on the bottom of bare feet after the onset of hand-foot syndrome.

As mentioned in my earlier post, be sure to be proactve with treating side effects as soon as they appear.

Be sure to read whatever you can about oxaliplatin desensitization, dose reduction and dose management.

Try to get a telephone number or e-mail contact in case you have problems and need to contact someone on the week-end.

Good luck!
- - -
Also:
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59538&p=472550#p472550
Dx @ 39 F on WW managmeent
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 - WW in place (12 weeks)
Mar'19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr - CCR, surgery on hold. 6 cycles of Xelox.
Aug - 6 cycles of Xelox completed
19 - Flex sig, biopsy, PET/MRI
2019 - 2023 - Every 6 mths - Full scope / Flex sig / biopsy, PET / MRI / CT every 6 months
Dec 23 - All clear 5 years on ! Thank god !

margiej
Posts: 109
Joined: Sat Apr 14, 2018 8:46 am

Re: Anyone doing xelox and xeloda. Please help

Postby margiej » Tue Apr 09, 2019 10:09 pm

Good luck tomorrow, Jolene! Sorry I am a little late to chime in here...I had the exact same treatment that you will be having...6 rounds of capeox without a port. Here are a few thoughts:

- I had a desk accounting job, only three days a week. I thought I would have no problem continuing to work but sometimes I could only get in once a week. I fought nausea almost continuously. I actually felt the best the day of my infusion and the next day because of the anti-nausea drug Emend in my IV. My employer had to hire someone to come in and do part of my job because I really wasn't able to be there. If you are able to take disability and stay home, I would really consider it. Although sometimes going to work can take your mind off treatment, I never felt well while I was there but felt I needed to go in to get certain tasks accomplished that no one else really knew how to do.

-. I also chose not to have a port, because I really, really, really didn't want one. The first infusion didn't go very well because they placed the infusion in my hand and my hand and arm were very painful for three days. After that we always went higher up in my arm and it was much better. I would get an ache in my shoulder but it wasn't terrible.

- the cold sensitivity started about an hour into my first infusion. My daughter-in-law got me a cold bottle of water and it was like drinking shards of glass. So start the room temp or warm liquids right in the infusion room.

-my worst side effect was definitely nausea.. It would last right through the week off of capecitabine. Sometimes even worse during the week off. I didn't know about CBD back when I was having chemo almost 3 years ago but my girlfriend said CBD really helped her nausea. I take CBD gummies to help my sleep and I love them.

I don't have much else to add.. Eat and drink as much as you can whenever you can. You likely will not be as ill as I was.. My doctor thought the treatment was a bit harder on me than others.

Good luck and let us know how it's going.
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 3/2017 and 1/2020
CT 10/3/17 clear
CT 10/17/18 clear
CT 10/17/19 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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O Stoma Mia
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Re: Anyone doing xelox and xeloda. Please help

Postby O Stoma Mia » Wed Apr 10, 2019 1:08 am

Jolene -

Good luck on your first chemo session today. I hope that it goes well and that they can answer all of your questions.

If your doctor orders a blood test prior to starting each chemo cycle, you could ask what is being tested, and why. You could also ask about the possibility of testing for systemic inflammation at the same time, because monitoring systemic inflammation would be important in the watch-and-wait context:

Top 5 Blood Tests For Inflammation
https://drjockers.com/top-5-blood-tests-inflammation/

Let us know how it turned out!

Jolene
Posts: 180
Joined: Wed Jan 23, 2019 10:17 am

Re: Anyone doing xelox and xeloda. Please help

Postby Jolene » Wed Apr 10, 2019 8:55 am

Thank you Margie ! I managed to read up your notes just before I went for the infusion !!

Started my very first cycle today and it turned out better than I imagined but then they were pumping me with loads of supplemental infusions and I guessed I can only tell in a few days time !

I was given the following supplemental infusion before oxlipalitin and I'm wondering if it's over the top ? :?

1) Emend (Anti-nausea) - oral tablet on the spot
2) Ondansetron - Prevention of throwing up
3) Dexamethasone - Steroid for allergies
4) Ranitidine - For gastro allergies
5) Benadryl - Anti histamine

I was also given some of the above in oral tablets in case I needed them !

I was able to return home and work some stuff off my laptop but feeling quite groggy most of the time ! I sure wouldn't like to return to the workplace as my arm is aching and a little uncomfortable.

I experienced immediate ache and small prickly sensation in the infusion arm towards the end of the infusion. Now, I can't quite grip stuff. For example I am unable to exert any strength using the arm, unable to open a bottle of water with 2 arms. It was like as if a huge rock was sitting on the arm itself. As long as I don't exert strength, there is no pain ! I can still type with both hands though, thank god... So far, still fairly manageable but it's only the first day... soo I can't be too complacent !

I have no cold sensitivity at the moment, still touching metallic and cold stuff okay for now but i believed it will change. Noted on warm liquids !! I live in the tropics and we love drinking icey cold beverages all the time ! :X

I don't know anything about CBD gummies. I'm not in the US so don't think I can purchase any of it but the doctor have given me a whole load of anti-nausea medication to be taken should I feel unwell in between infusions.

Oh - I'm also experiencing some jaw spasm when I start to eat or drink. It goes away after a few seconds but gosh I thought it was gonna hurt real bad when i first experienced it.

[/quote]
Last edited by Jolene on Wed Apr 10, 2019 9:39 am, edited 1 time in total.
Dx @ 39 F on WW managmeent
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 - WW in place (12 weeks)
Mar'19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr - CCR, surgery on hold. 6 cycles of Xelox.
Aug - 6 cycles of Xelox completed
19 - Flex sig, biopsy, PET/MRI
2019 - 2023 - Every 6 mths - Full scope / Flex sig / biopsy, PET / MRI / CT every 6 months
Dec 23 - All clear 5 years on ! Thank god !

Jolene
Posts: 180
Joined: Wed Jan 23, 2019 10:17 am

Re: Anyone doing xelox and xeloda. Please help

Postby Jolene » Wed Apr 10, 2019 8:57 am

Thank you Stoma Mia !! I will take the effort to check in with the doctor's blood test reasons and systemic inflammation.

I did my homework as you advised - bringing a paper and pen to jot down all the infusions !! :D

O Stoma Mia wrote:Jolene -

Good luck on your first chemo session today. I hope that it goes well and that they can answer all of your questions.

If your doctor orders a blood test prior to starting each chemo cycle, you could ask what is being tested, and why. You could also ask about the possibility of testing for systemic inflammation at the same time, because monitoring systemic inflammation would be important in the watch-and-wait context:

Top 5 Blood Tests For Inflammation
https://drjockers.com/top-5-blood-tests-inflammation/

Let us know how it turned out!
Dx @ 39 F on WW managmeent
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 - WW in place (12 weeks)
Mar'19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr - CCR, surgery on hold. 6 cycles of Xelox.
Aug - 6 cycles of Xelox completed
19 - Flex sig, biopsy, PET/MRI
2019 - 2023 - Every 6 mths - Full scope / Flex sig / biopsy, PET / MRI / CT every 6 months
Dec 23 - All clear 5 years on ! Thank god !

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O Stoma Mia
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Re: Anyone doing xelox and xeloda. Please help

Postby O Stoma Mia » Wed Apr 10, 2019 2:08 pm

Jolene wrote: ... They started me off with [an IV connection] to the back of my hand and seems to work okay for me. Why do you think switching arm might be a good idea mid-way ? I am right-handed and didn't think it would be ideal to have an achy prickly main arm that does most of the everyday mundane stuff !

I noticed this comment of yours on the other thread, and I thought I would mention what my experiences were with peripheral IV connections to the hand.

My Xelox experience started out like yours, with an IV connection to the back of one hand for the first infusion. On the second infusion, however, they could no longer find a large enough vein in the left hand, so they connected to the back of the right hand instead. On the third infusion, neither the back of the left hand nor the back of the right hand was possible any more, as the small veins on the back of both hands had already shriveled up and had receded due to the oxaliplatin, so the nurses did the connection higher up on the arm where the veins are bigger. That worked for a couple more infusions, but eventually I had to have a port installed because the oxaliplatin had made all of the peripheral veins in my lower arm inaccessible.

In my case it could have been due to my age or to a chronic atherosclerosis-like condition or to the cholesterol plaque/calcium deposits in my blood vessels. This may not happen to you, but I wanted to mention it anyway so that you know the context. Oxaliplatin can be very, very hard on the blood vessels. If your veins are already small and stiff, then it may be quite a challenge for the nurses to use peripheral IV to the hands for all 6 cycles. They may need to try another method.

Ref: https://www1.udel.edu/PR/UDaily/2007/oct/veins103106.html

Jolene
Posts: 180
Joined: Wed Jan 23, 2019 10:17 am

Re: Anyone doing xelox and xeloda. Please help

Postby Jolene » Thu Apr 11, 2019 9:43 pm

Stoma Mia - It makes all sense now ! Thanks ! Hoping my veins can survive Oxy nice and plump for all the for 6 cycles ! It would be a shame to start installing a port only at the last 2 cycles.. but if it has gotta be done then so be it !

By the way, second day into my first xelox cycle and I'm feeling super buzz !!!! I also had a huge appetite for food - how strange ! I even had to take some sleeping pills to help me get to sleep.

I woke up this morning (second day) feeling energetic too, I"m guessing the steroid injected in me during infusion day still hasn't gone off yet !!! I'm heading for a light workout at the gym later to see how I feel.

Hmmmmm..... ! :?
Last edited by Jolene on Fri Apr 12, 2019 9:42 am, edited 1 time in total.
Dx @ 39 F on WW managmeent
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 - WW in place (12 weeks)
Mar'19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr - CCR, surgery on hold. 6 cycles of Xelox.
Aug - 6 cycles of Xelox completed
19 - Flex sig, biopsy, PET/MRI
2019 - 2023 - Every 6 mths - Full scope / Flex sig / biopsy, PET / MRI / CT every 6 months
Dec 23 - All clear 5 years on ! Thank god !

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WriterGirl1969
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Location: Central NY

Re: Anyone doing xelox and xeloda. Please help

Postby WriterGirl1969 » Thu Apr 11, 2019 10:27 pm

Hopegirl wrote:Just wondering if anyone else is doing xelox n taking xeloda pills for 14 days straight . I’m having a hard time with nausea. It’s already been a week taking the pills and this is only my 2nd cycle . I have Ativan , compazine to take but I do not like the Ativan it makes dizzy n kinda groggy . Will the nausea go away . My first cycle wasn’t this bad with nausea. Is this gonna keep getting worst . I’m sorry so many questions . I’m so sensitive to meds so this makes it worst . My Xanax helps with my anxiety disorder n some nausea also but I don’t want to keep taking my Xanax because I don’t want to get addicted to it . Any advice Thank you


Hi Hopegirl.
I took Xeloda (monotherapy) and did a lot of research on both the oral vs. infusion (5FU) as well as various dosage options. I found the following study when at 5 months I starting having issues with hand/foot syndrome, but the study is primarily about reducing gastrointestinal toxicity, so I thought it might be pertinent to you as well. Basically the study notes that people experiencing issues with severe nausea or other gastro-related side-effects, benefited from a 1 week on / 1 week off regimen (vs. the standard 2 weeks on / 1 week off) with no measurable detriment to effectiveness. The key line I picked up on in this study was "observed that the maximum effect of capecitabine is reached at ~8 days.Therefore, further dosing through day 14 contributes to toxicity without enhancing efficacy."

Here's the link to the article:
https://www.nature.com/articles/npjbcancer20166

Hope this helps!

Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

Jolene
Posts: 180
Joined: Wed Jan 23, 2019 10:17 am

Re: Anyone doing xelox and xeloda. Please help

Postby Jolene » Sun Apr 14, 2019 12:46 am

5th day into my first cycle of Xelox and it hasn't been as bad as I imagined it to be.

However, I'm suffering from some very warm flushes at night. My body seems to be always on heat and if I don't turn the air conditioning or fan at full blast at, I'll be sweating like a pig ! I'm living in the tropics by the way ! I don't think it's related to my early menopausal hot flushes at all as this started only after the infusion of Oxy and feels very different from the regular menopausal hot flushes.

I'm also NOT sleeping well throughout the night , woke up a few times in the middle of the night but buzzing with energy strangely. When the morning comes, I'm miraculously full of energy and was still able to get up and go to the gym for a light work out ! How very odd !

The only thing that's bothering me is the heat of my body ! Anyone experienced that ?
Dx @ 39 F on WW managmeent
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 - WW in place (12 weeks)
Mar'19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr - CCR, surgery on hold. 6 cycles of Xelox.
Aug - 6 cycles of Xelox completed
19 - Flex sig, biopsy, PET/MRI
2019 - 2023 - Every 6 mths - Full scope / Flex sig / biopsy, PET / MRI / CT every 6 months
Dec 23 - All clear 5 years on ! Thank god !

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O Stoma Mia
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Re: Anyone doing xelox and xeloda. Please help

Postby O Stoma Mia » Sun Apr 14, 2019 1:15 pm

Jolene wrote:5th day into my first cycle of Xelox and it hasn't been as bad as I imagined it to be.
... The only thing that's bothering me is the heat of my body ! Anyone experienced that ?

Yes, the night sweats were a big problem for me. In the morning my sheets and pillow cases were usually all soaked and I had to change them.

With regard to profuse sweating under Xelox there are two concerns that should be addressed, in my opinion.

  1. Dehydration - There is a possibility that this will lead to dehydration, especially if you are experiencing continuous diarrhea at the same time. You may need to keep better tabs on your diarrhea while you are on chemo and make sure that you do not become dehydrated. If you are not eating well and not drinking enough water, then your electrolyte count may be low and may not have been replenished sufficiently. Drinking sports drinks like Gatorade can help boost up the level of electrolytes. Alternatively, you can make your own sports drinks inexpensively by mixing packets of oral rehydration salts with plain water. They come in different flavors. You should be able to find a flavor that you like.

    Everyone says to drink a lot of water to avoid dehydration, and this is true, but it is only part of the answer. Diarrhea figures into the equation, because if diarrhea is present at the same time, then most of the water that is consumed goes right out directly and does not go through the kidneys or through the bladder as urine. In the case of diarrhea, the kidneys start to become dehydrated, and they begin to develop little crystals which later can cause kidney stones and can block the kidney exit. You may need to satisfy the requirement for fluids by using things like non-carbonated sports drinks, or do-it-yourself electrolyte drinks made from water with packets of Oral Rehydration Salts mixed in. There are other possibilities have been mentioned for restoring electrolyte balance, but they may not be available in your country, e.g.,
    MissMolly wrote:... If dehydration remains a concern, consider the Cera-Lyte products. Cera-Lyte is superior in osmolality, absorption, and electrolyte replacement than Gatorade or Pedialyte. Cera-Lyte 70 is the product formulation recommended for re-hydration for ileostomies. It comes in single-serve packets as a powder that you mix with water or juice. It tastes quite good and is refreshing.
    I believe the website is: http://www.ceralyteproductsinc.com

  2. Bacterial and fungal infestations: If your bedding becomes moist and is not changed for several days, then in a warm, humid climate there can be a build-up of bacteria in the sheets and pillowcases that can cause problems, such as bed sores, or infections on the hands or feet. Also, there could be problems with scalp infections if the moist pillowcases become infested with dust mites. If this happens, then there are scalp cleanser products that can be used to keep the scalp clean and free of fungal infections

EDIT:
I looked up the adverse reaction lists for both capecitabine and oxaliplatin, but I couldn't find anything about feeling too hot, except for the entry on "Fever". When you were feeling hot, did you take your temperature? Was it above normal?

https://www.drugs.com/sfx/capecitabine-side-effects.html

https://www.drugs.com/sfx/oxaliplatin-side-effects.html

Jolene
Posts: 180
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Re: Anyone doing xelox and xeloda. Please help

Postby Jolene » Mon Apr 15, 2019 9:36 am

Hi Stoma mia - I found it odd that night sweats and feeling hot doesn't seemed to be a well recorded side effect of Xelox ! My mum who underwent Folfox a few years back told me she felt the heat and night sweats too. I have also been advised by plenty of others with some sort of indirect chemo experience to keep myself really well hydrated and "cooled" with coconut water and also barley drink. I have since been doing that non-stop and seemed to have helped !!

I wasn't really on fever per se, it is just a really warm sensation going through the whole body and all I wanted to do is to be inside a giant ice tank. Lol. I didn't think to take my temperature but will remember to do so the next time and check it out. Also, I didn't feel unwell like a fever would make one feel, it was just like a blanket of warm air that surrounds me wherever I go ! It was uncomfortable but I wasn't unwell.

I believed coconut water is well know for his electrolytes too ! I may look up other sports drinks for a change too I guess !

Thank you for all the drinks links and tips on hygiene !! I'll be sure to change my pillow cases and bedding more often !
Dx @ 39 F on WW managmeent
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 - WW in place (12 weeks)
Mar'19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr - CCR, surgery on hold. 6 cycles of Xelox.
Aug - 6 cycles of Xelox completed
19 - Flex sig, biopsy, PET/MRI
2019 - 2023 - Every 6 mths - Full scope / Flex sig / biopsy, PET / MRI / CT every 6 months
Dec 23 - All clear 5 years on ! Thank god !

zephyr
Posts: 362
Joined: Thu Aug 18, 2016 7:31 am

Re: Anyone doing xelox and xeloda. Please help

Postby zephyr » Mon Apr 15, 2019 9:57 am

O Stoma Mia wrote:Dehydration ... Alternatively, you can make your own sports drinks inexpensively by mixing packets of oral rehydration salts with plain water. They come in different flavors. You should be able to find a flavor that you like.



Please forgive this brief interruption to say thanks for the suggestion. I've been drinking coconut water because I don't like the sport drinks, and another alternative is welcome.

Edited to add: I did a little research about "different flavors" and discovered that electrolytes are in Ultima powder that I've tried at my doctor's office. They have other good flavors too, this just happens to be my favorite:

https://www.amazon.com/Ultima-Replenisher-Electrolyte-Pomegrante-Gluten-Free/dp/B01IIGNPK4/ref=sr_1_2?crid=3BR8LE8QM54UA&keywords=ultima%2Breplenisher&qid=1555340587&s=sporting-goods&sprefix=ultima%2Bre%2Csporting%2C177&sr=1-2-catcorr&th=1
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin

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O Stoma Mia
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Re: Anyone doing xelox and xeloda. Please help

Postby O Stoma Mia » Tue Apr 16, 2019 12:51 pm

Jolene wrote:... I will take the effort to check in with the doctor's blood test reasons and systemic inflammation.
...


Just a reminder ... and then a suggestion --

  • Reminder At some point in time before your XELOX Cycle#2 begins, you should be having a blood test for the monitoring of oxaliplatin-induced problems:
    Oxaliplatin Monitoring:
    -Monitor a full blood count with white cell differential, hemoglobin, platelet count, and blood chemistries (including ALT, AST, bilirubin, and creatinine) prior to treatment initiation and before each subsequent treatment cycle.
    -Monitor neurological toxicity; perform a neurological examination before each administration and periodically thereafter.

    When you go in for this set of tests, could you ask the doctor about other possible tests that might be good to do at this time for purposes of establishing a good baseline for conditions like systemic inflammation.

    There is a growing body of evidence suggesting that chronic systemic inflammation is at the base of a number of health problems, possibly including cancer recurrences and the proliferation of micro-metastases.

    ...as a doctor, I can tell you that virtually all major health conditions stem from one primary cause: chronic systemic inflammation.

    It’s the silent trigger behind conditions as varied and seemingly unrelated as Alzheimer’s, asthma, heart disease, chronic pain, digestive disorders, diabetes and, you guessed it – cancer.
    Reference: https://thetruthaboutcancer.com/inflammation-and-cancer/

    For a starter, you could try adding hsCRP (C Reactive Protein) to your panel of blood tests
    https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53631&p=425703#p425649

  • Suggestion: In another thread, member prs mentioned extending the oxaliplatin infusion time to six hours. In fact, this possibility is already mentioned in the package insert for oxaliplatin
    Oxaliplatin Adjustments
    ACUTE TOXICITIES: Consider prolonging the infusion time for this drug from 2 hours to 6 hours.

    Thus, one thing you could try is to ask the oncologist if your infusions could be run at a slower rate, and thereby extend the infusion time up to six hours. This might help reduce the level of short-term oxaliplatin toxicity.

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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: Anyone doing xelox and xeloda. Please help

Postby juliej » Wed Apr 17, 2019 5:06 pm

Jolene wrote:I believed coconut water is well know for his electrolytes too ! I may look up other sports drinks for a change too I guess !

Nuun tabs are another possibility. I used them all throughout my Xelox treatments. They come in a variety of flavors (lemon-lime is my favorite!). You just add the tablet to a bottle of water and let it dissolve. I found they were handy to have in my bag - if I felt fatigued I could just buy a bottle of water (although I often had one with me) and get instant relief.

https://www.amazon.com/s?k=nuun+electrolyte+tablets+hydration&hvadid=214445902284&hvdev=c&hvlocphy=9032905&hvnetw=g&hvpos=1t2&hvqmt=b&hvrand=7102021096954792681&hvtargid=kwd-349363270508&tag=googhydr-20&ref=pd_sl_6uh3rbch9h_b

Also, as our friend BrownBagger (who's sorely missed) would have added -- pickle juice works too if you like the taste! :D :D :D

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


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