CSN Login
Members Online: 8

You are here

Just got my orders

lilpep1972's picture
lilpep1972
Posts: 80
Joined: Dec 2014

Hello my fellow colonites hope everyone had a nice holiday season. 

Met my oncologist today Dr.Saltz of Sloan Kett and I was introduced to my new friend, Mr.Port.

I will be getting my BFF attached to me next Tues and will start my fight the following Tues(Jan27th) ...I was told I will be getting a cocktail of OXI and folfox. I will be going 12 rounds with the beast master and hope to yell " YO ADRIAN I DID IT" at the end. Does anyone have any last minute do' and dont's ?? I'm not really sure what I'm in for but I'm praying it won't be that bad. Thanks for all your input. This board is filled with the most amazing people,god bless everyone of you and I pray that everyone here slays the beast like I hope todo.. Thanks again. :)

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

here's to getting a port, most important thing first.  This year I will have had my power port for 5 years, she's been good to me, saving veins and pain :).

I've been on weekly Oxi, 5FU and levicorn (no doubt spelt wrong) since August with a week off every four weeks.

The Oxi does suck, this is my third round with it.  I wear sandals (so my feet stay cold) bring a large frozen ice drink (To keep my hands around, and to drink it while I'm getting infused.)  It has made a world of difference, I can drink frozen water from day one, where as the previous last rounds of Oxi I had a year and more ago, it took up to nine days before be able to drink water that didn't have to be microwaved 20 seconds, so I could tolerate it (drinking cool or even room temperature water was like trying to drink cold ice shards).  You may like to try this, it will save you a bit of discomfort.

if you get nausea (I don't) make sure you ask your Onc for anti-nausea medication, and in case of diarhea ask for a prescription of Lomital (spelled wrong no doubt, generic name is Diphen/atropine) which for me has really helped.

If you live in a cold area, wear warm gloves for the hands, when feet and hands get cold it kind of feels like they were frost bit right away (they aren't, just feels that way), also breathing in cold air can "take your breath away" but you will be able to breathe again, put your hand over your mouth and nosel and try to warm them up, it isn't fun if they get cold while on the Oxi.

good luck, know I'm and probably several others are doing the same chemo and can share their stories with you.

Good luck on shrinkage of those pesky tumors!!!

Winter Marie

lilacbrroller's picture
lilacbrroller
Posts: 412
Joined: Jun 2012

welcome to our board. Having a sense of humor is a plus! As long as you don't put lipstick on mr port and make him talk at parties you're okay..

this is a great community with lots of experience and wisdom to share.

atb

karin

Annabelle41415's picture
Annabelle41415
Posts: 6682
Joined: Feb 2009

Everyone is different, but especially let the doctor know if you don't feel well by any means.  The oxy is nasty so when you feel the cold sensitivity just make sure that you test everything before eating or drinking and even going out in cold weather if you live in cold climate.  You might get diaharrea or constipation, chills, shaky voice, loss of appetite, fatigue, etc.  If you feel something that you are unsure of you can always come here on the board and let us know and we usually can tell you if that has happened to us as well.  Wishing you the best in the upcoming treatment and hope you do well.

Kim

lilpep1972's picture
lilpep1972
Posts: 80
Joined: Dec 2014

Thank you all for the input. I will definitely try everything you all have said as I'm not looking foward to this at all but I know it has to be done. I don't know very much about this but if I can help anyone here in any way please don't hesitate to ask I will keep all informed about my sessions as I'm sure I will have some more questions. 

Thanks again and may God bless you all  :) 

chris

Yolllmbs's picture
Yolllmbs
Posts: 361
Joined: May 2014

in place is helpful. I have a power port and was happy to not have all the arm sticks.  We are here. I finished round 10 of 12 of the same chemo. My oncologist stopped it because of the side effects. Tell your chemo nurses everything you're feeling. They will be your best friends. 

Yolanda

John212's picture
John212
Posts: 116
Joined: Jan 2015

The one tip I got from soneome before starting chemo that I try to pass on whenever I can is to bring along some strong candy mints. Having one in your mouth will help offset the odd taste you're likely to experience at the beginning of the infusion. The taste isn't terrible but it's kind of unpleasant. I started out with starlite mints and graduated to lemon drops and then finally to cinnamon Altoids. I still bring along a couple of the Altoids when i go in to get my port flushed.

As others have mentioned, each person's reaction to the chemo drugs is a little different. I, too was on the FOLFOX regimen with oxaliplatin and 5FU and had very few side effects during treatment. Pay close attention if you find yourself feeling sensitive to cold, as that could be an indication that you could develop some peripheral neuropathy over time. It isn't the end of the world, but it's unpleasant and can last quite a while.

If you think of this as a sort of adventure it can be a little easier to handle. You discovered this forum months ahead of me and it will be a big help to you, I'm sure.

skeets1961
Posts: 56
Joined: Dec 2014

Hi, my husband is on the same cocktail and he has it every two weeks.  How often will you be getting yours?  He's had only 3 rounds so far.  What he has complained about is severe fatigue that hits the day we take the pump off (day 3 from the start), he stays away from cold drinks, touching anything cold in the refrigerater and bundles up when going outdoors.  He said it feels more like touching something hot or probably like frost bite.  What stage are you in?  My husband is stage 4 that has mets to lung, liver & stomach lining.  Get and take the nausea meds before or at your first treatment.  My husband refused to take them the first two treatments but this time decided to try it and he ate better the first two days.  Today is 3rd day so he's been in bed most of the day.  Drink plenty of fluids and i would ask Onc about a multivitamin for the nutrients. Will you taking the chemo pump home?  after the total dose is given, i take it off so he doesn't have to get out in the cold.

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

I know a million things are going through your mind but don't worry, chemo is completely doable. They have a drug for every side effect and they'll switch things up or discontinue if it's too much. Drink plenty of water and rest, don't try to overdo it. Good luck and keep us posted!

Easyflip/Richard

janderson1964
Posts: 2215
Joined: Oct 2011

I like your sense of humor but dont seriously think of your port as you BFF. i got rid of mine twice and am doing treatment now without a port.

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

I don't have it this time, but past regimes of the Oxi would cause me jaw pain when I went to eat, don't worry it only last for seconds and after the "ow, ow ,ow" and hand to jaw to ease the pain, it only lasts seconds and is gone by your second bite and you can continue to eat fine after that with no pain.

I also forgot about occasional spasms in my hands, arm and legs, they will go spastic on occasion, ( if you get that side effect, many don't), like I would go to walk up a stair and my leg would refuse to mind me, going in different direction then I wanted.  Your fingers will curl up or go backwards with you having no control over it.  It looks like you have lost contol of muscles and gone spastic. This too will go away after a few minutes.  Hopefully you won't get them, but want you to be aware of what is happening if you do.

Winter Marie

lilpep1972's picture
lilpep1972
Posts: 80
Joined: Dec 2014

Although I haven't looked on other boards I jus want to say to everyone here in colon land you guys and dolls are all awsum. The quick responses and wonderful input is such a huge help. I feel like I have gained brothers and sisters that I never knew I had. Thank you all so much I read your posts and just feel at such ease. Almost like I know the answers to some test I was stressing in high school lmao.. I'm going in this Wed to get the port installed then on Thurs morning I'm hopping on a plane to South Fla to do a little fishing and relaxing in the keys for 4 days,returning to NY on Mon and at Sloan Kett on Tues for round 1 .. they said I will get hooked up then I can go home and two days later a nurse will come to my house to unhook me. Is the day after my oil change going to be the worst? I pray for everyone here an there families for Gods strength and love. 

Be well all and stay safe :) 

Chris

Trubrit's picture
Trubrit
Posts: 5378
Joined: Jan 2013

but your shoulder is going to be tender and sore for a few days, so don't go too mad with the rod.  

I too crashed on the day my pump was removed, and sadly as the treatments progressed, the bad days got longer and longer until my bad days outweighed my good days. 

We are all different with our reactions to the chemo. There are so many different side-effects. I think I had 21 different ones. 

I'm glad you are happy with the forum. We look forward to getting to know you and helping you through your journey. 

Sue - Trubrit

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

were actually after being disconnected.  I think the assortment of drugs they give you when they hook you up have worn off at that point or something.  So I would get the pump taken off on Thursday, and feel progressively sicker Friday-Monday.  At that point, things would start to improve.

I got very good at scheduling outings for that 2nd weekend!

I did want to also mention that neuropathy (nerve damage) is a very real and potentially long term side effect from the oxylaplatin.  If you have that, and it gets to the point where it's not going away in between sessions, you should tell your doc asap and discuss reducing or removing it.  Apparently it only accounts for about a 5% difference in prognosis, so it's worth calibrating it a bit if the side effects get too bad. If you can avoid a lifetime of tingly, painful hands and legs, I recommend it!

Subscribe to Comments for "Just got my orders"