Anyone doing xelox and xeloda. Please help

Please feel free to read, share your thoughts, your stories and connect with others!
NHMike
Posts: 1975
Joined: Fri Jul 21, 2017 3:43 am

Re: Anyone doing xelox and xeloda. Please help

Postby NHMike » Sun Jan 07, 2018 5:00 pm

I've taken Xeloda before eating, on an empty stomach, while eating and after eating with no problems.
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

peanut_8
Posts: 2318
Joined: Sun May 25, 2014 1:31 pm

Re: Anyone doing xelox and xeloda. Please help

Postby peanut_8 » Sun Jan 07, 2018 5:38 pm

It's important to take Xeloda up to 30 minutes after eating because food affects the absorption rate of the drug, not just aiding with reducing nausea.

Best Wishes,
peanut

edited to provide link

http://clincancerres.aacrjournals.org/c ... 1.full.pdf
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

weisssoccermom
Posts: 5941
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Anyone doing xelox and xeloda. Please help

Postby weisssoccermom » Sun Jan 07, 2018 6:26 pm

Actually, the Genetech website (manufacturers of Xeloda) clearly states,

"XELODA tablets should be swallowed whole with water within 30 minutes after a meal.
XELODA is a cytotoxic drug. Follow applicable special handling and disposal procedures.1 If
XELODA tablets must be cut or crushed, this should be done by a professional trained in safe
handling of cytotoxic drugs using appropriate equipment and safety procedures. XELODA dose
is calculated according to body surface area."


I would follow the advice of the manufacturer.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

Hopegirl
Posts: 51
Joined: Wed Nov 08, 2017 10:06 am
Location: Modesto ca

Re: Anyone doing xelox and xeloda. Please help

Postby Hopegirl » Sun Jan 07, 2018 9:15 pm

weisssoccermom wrote:A few things to remember about Xeloda.

1. As others have said take it within 30 minutes after you eat. NEVER NEVER take it on an empty stomach. In addition, DO NOT take it with the meal.
2. Get OTC Nexium or another GERD like medication. When I was taking Xeloda, that was the FIRST medication that was going to be Rx'd but I was already on it. Tried taking it without it....OWWW!
3. One aspect of Xeloda that doesn't get much attention is the folic acid supplementation. First make sure you are NOT taking any folic acid supplements or even a multi-vitamin because (unless something is new) they all contain the recommended daily amount of folic acid. Remember that in the USA/Canada, our wheat is fortified with folic acid. This means that food items like: cereal, crackers, bread, pasta, rolls, etc.....the items we tend to eat with a queasy stomach.....all are fortified with folic acid. This doesn't mean that you can't eat carbs BUT......be proactive and read the labels. For example, most cereals are SUPER fortified with folic acid. Check your labels.....you will be surprised. What this all means is just that you have to be careful about how much of these foods you eat. Don't go eating a bowl of cereal for breakfast and then take your Xeloda....not a good idea. Don't eat cereal for breakfast, a sandwich for lunch, munch on some crackers and then have pasta for dinner.

BTW - reading your title....XELOX is, by definition, Xeloda and oxi. You may ask your doctor for a slightly different version of it.....one where you take Xeloda for 7 days, starting with day 1.....at the same day you get the infusion of oxi....then 7 days off of Xeloda. The difference is that you go in for the infusion every 14 days vs every 21 days.

Try getting an acid reducer and then watching your folic acid intake. Those two things together can make a world of difference.

I’m doing the 21 days one I guess. I go in every 3 weeks to get my infusion for 2 hours . Than same day I take my xeloda pills for 14 days straight than 7 days off . Taking the pills for 14 days straight is the part I don’t like . Sigh! I just don’t want to do the pills at all
Diagnosed 10/11/17 at 46 years old . Now 47. 4 kids 26,22,12,11
Colon cancer Stage 3b 5/26 lymph nodes positive
Surgery 10/19/17
Cea 0.6 11/15/17
Finished last Xeloda pills 6 cycles 4-10-2018
Did only 3 infusions of oxilaplatin due to bad neuropathy
5-8-2018 Cat Scan clear
5-8-18 Cea 0.6
5-10-18 Port removed
8-7-2018 Cea 0.7
11-13-2018 Clear Scan
11-13-2018 Cea 1.4
12-11-2018 Clean colonoscopy
3-13-2019 Cea 0.8
Pray for NED Always

Soccermom2boys
Posts: 207
Joined: Tue Nov 10, 2015 10:29 pm

Re: Anyone doing xelox and xeloda. Please help

Postby Soccermom2boys » Sun Jan 07, 2018 11:34 pm

Hopegirl wrote: Taking the pills for 14 days straight is the part I don’t like . Sigh! I just don’t want to do the pills at all


Have you considered switching to FOLFOX? No pills needed for that one. Yes, you have a pump attached to you for 48 hours every two weeks, but it’s more manageable than it sounds. I personally am not a pill person, I did all of the Xeloda I needed to for new adjuvant chemoradiation, but there were times where I gagged getting those suckers down so I knew that there was no way I could do the Xelox route for adjuvant chemo. Just a thought. I feel for you!
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

weisssoccermom
Posts: 5941
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Anyone doing xelox and xeloda. Please help

Postby weisssoccermom » Mon Jan 08, 2018 12:15 am

Hopegirl,
I feel your pain....I didn't mind the pills for the first say 10 days but those last 4 days....I just wanted to be done. It's the pills....the 5FU that is doing most of the work to help kill off the cancer so while you may not like them, they are necessary.
You could switch to FOLFOX but, IMO, I didn't like the pump and the side effects from the 5FU made me feel awful. I HATED the pump....with a passion....but then again, I twas doing the pump 24/7 during radiation which is a whole lot different than the 2 days/cycle you are hooked up to it.

All in all, patients tolerate Xeloda better than 5FU WITH the exception of the hand/foot but everyone is different. Your doctor would probably switch you to FOLFOX BUT....if you didn't tolerate that, I'm not sure if he would consider switching you back and forth. Talk with your doctor about reducing the dosage of Xeloda OR ask about the 7 day on/7 day off protocol. The people that I know who did that had no problems. Regardless of FOLFOX, XELOX 21 or XELOX 7.....your body won't be the same. You're going to feel the side effects of the oxi and/or the Xeloda whichever choice you make. I know you don't want to do any of it and you can quit....but the 'cocktail' is your best shot at beating this nasty beast.

Take it one day at a time. If you start to think about when you'll be done, how long this is all going to take, all the side effects, etc. you're going to drive yourself nuts. As for the hair thing.....your onc is right. You shouldn't lose your hair....you may thin but that's it. As for the neuropathy.....just be happy you don't have it yet. Count your blessings.

Good luck with whatever you decide.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

Hopegirl
Posts: 51
Joined: Wed Nov 08, 2017 10:06 am
Location: Modesto ca

Re: Anyone doing xelox and xeloda. Please help

Postby Hopegirl » Mon Jan 08, 2018 1:22 am

Thank you everyone for advise. I’ll probably stick with what I’m doing now . I just hate that first week of nausea n not able to eat or want to eat anything. And drinking liquids is hard too because it taste so nasty n with the cold sensitivity makes it worst n of course that first bite syndrome . And some depression not sure if any of you guys get it . Right now I’m mostly experiencing anxiety disorder. I hate that I have to take my Xanax right now just to calm down . I’m trying not to take it all the time I only take half of .05 milligrams. I hope it won’t be hard later to stop taking it when I finished. Just curious at what cycle did your neuropathy start for some of you guys . Or the hair thinning . Is it the infusion that’s making me so nauseous or the pills or both? 2 more days to go on the pills . Can’t wait for my 7 days break :D
Diagnosed 10/11/17 at 46 years old . Now 47. 4 kids 26,22,12,11
Colon cancer Stage 3b 5/26 lymph nodes positive
Surgery 10/19/17
Cea 0.6 11/15/17
Finished last Xeloda pills 6 cycles 4-10-2018
Did only 3 infusions of oxilaplatin due to bad neuropathy
5-8-2018 Cat Scan clear
5-8-18 Cea 0.6
5-10-18 Port removed
8-7-2018 Cea 0.7
11-13-2018 Clear Scan
11-13-2018 Cea 1.4
12-11-2018 Clean colonoscopy
3-13-2019 Cea 0.8
Pray for NED Always

weisssoccermom
Posts: 5941
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Anyone doing xelox and xeloda. Please help

Postby weisssoccermom » Mon Jan 08, 2018 1:55 am

Hopegirl....if you are already experiencing the cold sensitivity and the 'first bite syndrome'.....you've already started with the side effects of oxi. Those are the first side effects to come. The definition of neuropathy is:

disease or dysfunction of one or more peripheral nerves, typically causing numbness or weakness.

Since you've already gotten the cold sensitivity...the tingling in your fingertips/toes and possibly the tightness in your throat if exposed to cold....that's a form of neuropathy. The OUCH when you take that first bite is another manifestation of it as well. So, you've already gotten it. It will likely get worse and last longer with each progressive cycle. There's nothing you can do about it.

The oxi tends to make people nauseous but Xeloda can as well (although likely not as much). For the stomach upsets, as I said earlier, try watching what you eat and if you are eating a lot of starchy stuff....try and back off a little. That has been shown to be a problem in studies comparing people in Europe (where their flour isn't enriched and the USA/Canada where it is).

As for the hair thinning, I honestly can't tell you when it began. It was honestly pretty minimal. I was more aware of it than anyone else (except my hairdresser). It's not as though you have these obvious bald spots...just that your hair becomes a little thinner. If you have really thick hair, no one will probably notice.

Please try to calm down and don't over analyze things. Look at this as just something you have to do. No, it's not fun but its not permanent either. It will be over at some point. Regardless of which protocol you choose, there are going to be days when it just stinks! You push through it....turn on some Hallmark movies, read a good book, write some cards/letters to friends....do whatever you have to....but take it one day at a time. It won't be long until it's Valentine's Day and then Easter....the first day of spring and with the sunshine and nicer weather, with the birds chirping, you'll find yourself in a better mood.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

User avatar
Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Anyone doing xelox and xeloda. Please help

Postby Robino1 » Mon Jan 08, 2018 8:41 am

To get me through all of this, I look at it as the side effects are showing me it is kicking those cancer cell's ass. If it's doing this to healthy cells, it's got to be working on those bad ones too. (Don't correct me if I'm wrong, I need to believe this ;) )

Another mind trick is to keep saying 'this is only temporary'.

One good thing that came with the thinning hair, it took the gray ones first!!!! Sweeeeet!! :lol:

Find the positives and concentrate on those. I am doing the pump, yes it sucks wearing it for 2 days but damn! It sure is nice when I'm no longer tethered. I will be doing the pump until the cancer is gone or the 5FU fails. Failure is not an option on my radar. Even with the pump on I continue to go out and do things. I won't let it slow me down. It is doing a job that my body cannot on its own.

A determined fighting spirit will help get you through this. Imagine those pills dissolving and seeking out those cancer cells and kicking ass. Visualize them traveling to the intended target, if you can.

My thoughts and prayers are with you. You Can Do This!!
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

Robster
Posts: 1
Joined: Sat Apr 07, 2018 2:38 pm

Re: Anyone doing xelox and xeloda. Please help

Postby Robster » Sat Apr 07, 2018 3:00 pm

Don't know if it's much HELP, but I'm finding that reading the experiences of others is a welcome reminder that the stuff I'm dealing with isn't unique. I'm nearing the end of Round 1 of 5 of CAPOX/XELOX - just enough to have found that it sucks, will suck more, and eventually may suck less. Sounds kind of grim, but nowhere near the kind of grim that the word "cancer" brought forth before I was diagnosed. I'm really blessed to have a fantastic caregiver at home and a varsity team at the med center.

"First bite" came as a complete (nasty) surprise after my first encounter with Oxaliplatin - may be easier to deal with next time now that I know it's coming.

Best and high hopes, all...

NHMike
Posts: 1975
Joined: Fri Jul 21, 2017 3:43 am

Re: Anyone doing xelox and xeloda. Please help

Postby NHMike » Sat Apr 07, 2018 4:04 pm

A friend asked me if I could just quit the chemo.

I explained the sequence of Neo-Adjuvent Chemo/Radiation, Surgery and then Adjuvant Chemo. I explained that the cancer was gone after surgery but that there was the possibility of stray cancer cells still in my body. I then explained what Stage 4 cancer is and then that the survival rate is around 12% or rather bleak. So the reason for Adjuvant Chemo was to prevent recurrence and spread. I then explained that one of my goals was to prevent permanent side-effects and that I'm doing what I can to prevent those side-effects while doing what I can to prevent recurrence?

Does chemo work? I had a look at the Total Neoadjuvant Therapy (TNT) paper and it's basically proof that chemo works. The results of TNT research indicates better results doing Neoadjuvant Chemo and Radiation, then Adjuvant Chemo is more effective than the Standard of Care approach of Neoadjuvant, then Surgery, then Adjuvant. I think that we need additional studies to confirm the initial trials but I can see the Standard of Care changing in the next couple of years. It's to the point where more wind up with PCR from just the Chemo alone and don't need surgery which means that they avoid loss of functionality.
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

User avatar
horizon
Posts: 1490
Joined: Tue Apr 12, 2011 10:10 pm

Re: Anyone doing xelox and xeloda. Please help

Postby horizon » Sat Apr 07, 2018 8:39 pm

weisssoccermom wrote:Please try to calm down and don't over analyze things. Look at this as just something you have to do. No, it's not fun but its not permanent either. It will be over at some point. Regardless of which protocol you choose, there are going to be days when it just stinks! You push through it....turn on some Hallmark movies, read a good book, write some cards/letters to friends....do whatever you have to....but take it one day at a time. It won't be long until it's Valentine's Day and then Easter....the first day of spring and with the sunshine and nicer weather, with the birds chirping, you'll find yourself in a better mood.


This is great advice. I did Xelox for 6 months and 6 months just seemed impossibly long. I just kept telling myself "get through the next one that's all that matters".
I'm just a dude who still can't believe he had a resection and went through chemo (currently 7 years NED). Is this real life?

Jolene
Posts: 115
Joined: Wed Jan 23, 2019 10:17 am

Re: Anyone doing xelox and xeloda. Please help

Postby Jolene » Mon Apr 08, 2019 11:19 am

Trying to revive this thread as I'm going onto 6 cycles of Xelox very very soon !

My mum was a colorectal patient 4 years back and she had 12 cycles of folfox. It was traumatic for her and also for the family seeing what she went through. I an expecting myself to experience similar typical Xelox related side effects.

My questions are

1) How do you guys cope with work ? Do you ask for a medical leave while on your cycles ?

2) I'm in a profession where relief cover needs to be organized weeks ahead and I can't really imagine myself doing my job with the kind of fatigue and side effects that has been described and witnessed (through my mum). This means I need to let my bosses know how long I may be away for but then it's so difficult to predict at the moment without going through the first cycle as everybody reacts differently. I feel like I need to request for a few months of medical leave in order to take care of myself while at the same time without letting my workplace situation get into a mess with my unpredictable side effects. Calling in sick the next day frequently isn't going to go down well but letting the workplace know well in advance is ideal but alas.. chemo is so unpredictable ! How did you deal with your workplace situation ?!

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 ?

4) What was the very first side effect that you experienced and how soon did it start ?

5) What were the manageable side effects and what were the worst ?

6) Were you still able to cook ? Wash ? Shop ? Exercise ?

Thanks !!!
Dx @ 39 F, married, no kids, full-time work
Nov 18 - Colonoscopy + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT prescribed - 28 sessions of radiation + Capecitabine at 3000mg daily
End Dec 18 - Completed CRT with little side effects
Feb 19 - Second MRI showed a speck of residual tumour - continue to wait
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Going for 6 cycles of Xelox.

User avatar
betsydoglover
Posts: 967
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Anyone doing xelox and xeloda. Please help

Postby betsydoglover » Mon Apr 08, 2019 12:48 pm

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.

2) Regarding scheduling of absence. I took FMLA - which is a right unless you work for a very small company. My boss knew my approximate schedule, but also knew there would be ad hoc absences - for ex. I took the day off for CT / PET scans. The whole sequence takes a while, and the CT oral contrast goes right through me. I was able to kind of do my own thing at work, mostly, so this was not a problem. I was also lucky to have generous "sick" leave, so mostly this FMLA did not cause me $.

3) Re: Port. I did not have one, although after 6 rounds, the nurses wanted me to have one IF I did more oxy (which I did not). The first infusion caused the cold sensitivity to kick in - I went shopping afterwards, walked by a store with open door and AC on inside - my face temporarily "twisted up". It was almost amusing. I sent emails to my friends telling them how it went and my fingers tingled as I typed but otherwise no neuropathy issues. As treatment progressed, my arm would get stiff following the oxy infusion, then tingly for a week (no problem) and then perfectly normal. One round, my feet felt like they were walking on glass, but it only lasted about 2 days. It was July, but as treatment progressed, my feet got cold - nothing socks couldn't fix. My hair thinned about round 5, but only so I'd notice it in the shower - any my hairdresser of 20 years didn't notice.

5) Side effect management - I had Compazine / Ativan for nausea, and I found if I took it proactively I was ok - in other words, don't wait until you feel the nausea to take it. I mostly only had to take it the first week / 10 days. Xeloda causes hand/foot syndrome. Using lots of moisturizer helps. No long baths. When I was home, I often wore Crocs with a gel insert and sometimes sat with my hands on an icepack to feel better. Your onc will reduce the dose if it gets too bad - the manufacturer instructions expect this to happen. (They may also reduce oxy if necessary.) You will probably be a bit tired - but remember that these drugs are zapping cancer - thinking that helped me a lot,

Every one reacts a bit differently, but my experience is not unusual. Other than hand/foot and some tiredness and slight GI irritation (not nausea) these side effects are due to oxaliplatin. I've been also on Xeloda/ Avastin and then Avastin only. None of the nausea / neuropathy occurred with either regimen, and for me, at least, the Avastin only had absolutely no side effects.

Hope this helps, and hope it goes well with you.
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

User avatar
O Stoma Mia
Posts: 1600
Joined: Sat Jun 22, 2013 6:29 am

Re: Anyone doing xelox and xeloda. Please help

Postby O Stoma Mia » Mon Apr 08, 2019 3:00 pm

Jolene wrote:... I'm seeing the oncologist this Tuesday and I believed I might be starting as soon as Weds the following day... Any tips ?

Jolene wrote:Trying to revive this thread as I'm going onto 6 cycles of Xelox very very soon !
...
My questions are
1) How do you guys cope with work ? Do you ask for a medical leave while on your cycles ?
2) How did you deal with your workplace situation ?
3) What was your first infusions like ?
4) What was the very first side effect that you experienced and how soon did it start ?
5) What were the manageable side effects and what were the worst ?
6) Were you still able to cook ? Wash ? Shop ? Exercise ?

Thanks !!!

I think that most of what I have to say is included in my earlier post on "Tips on minimizing XELOX side effects", but there are a few things I might mention related to your questions above.

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


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Rock_Robster and 28 guests