First round of FOLFOX today -Advice?

[Marylandmaniac]

SO I got my first infusion and am wearing the lovely (not !!) pump. So the first stick into my port hurt. Crap! I think it is sore and I put numbing cream on top of the steri-strips instead of skin. Rookie mistake. Next time and I am loading up on the numbing cream. No issues at first other then things just feeling a little off. Tonight after dinner I noticed the back of my throat feels a little sore. Any advice of making this better or is it something you have to deal with? I just gargled with Biotene mouthwash. Hopefully that will help.

So far no cold sensitivity. I was warned so I have my gloves. But I think the engineer in me couldn't resist so I tried touching something cold and nothing. I am not going to push it because maybe the side effects are going to start now.

[jhocno197]

My husband usually felt 'ok' until tget disconnected him from the pump.

[Coloncancerqueen]

Hang in there. You can do this.

As far as mouth sores. I used a quarter tsp salt and a quarter tsp baking soda in a half of a cup of warm water. Do this after you eat too if sores continue.

I always hated the pump and that sound it made.

Keep your eye on the prize and you'll get there one day at a time.

[AussieAssCancer]

Welcome to the club, pity you have to join us butt it's a great bunch of people with huge amounts of experience/info.

I was pretty lucky with my FOLFOX and other than neuropathy for the final couple rounds and extreme fatigue at the end, I tolerated it while working full time.

Definitely don't chance fate re the cold. I shelled a kg of chilled prawns about a month ago and now can't feel my thumbs

Stay hydrated and rest when you can. Other than that it's all about crossing off treatments. My pump has just stopped for the last round and although I'm stuck at work at the moment (I'm a prosecutor and got dumped with a big matter in court), I'll be unhooked shortly.

I wish you smooth sailing and keep us posted.

GK

[teri3]

I didn't have trouble with the cold neuropathy until later. I gargle several times a day with 16oz water with a tsp of and a tsp of baking powder. It helps keep thrush and other mouth sores away. I felt pretty good until the last several treatments and I started to get really tired, usually the tiredest after the unhook the hateful whiney pump. Sleeep when you need it and keep a good attitude! Good luck!
Teri

[Soccermom2boys]

It's good to get that first round under your belt--the fear of the unknown can be so mentally debilitating.

When you had that feeling in your throat was it after you swallowed something cold? You do get a painful sensation in your throat with the Oxi if you swallow cold drinks and frozen treats. Keep that in mind going forward during treatment weeks (goes away a few days after disconnect).

The cold sensitivity in the fingers and/or toes is generally mild at start but builds with treatments. Trust me, you will know it when you feel it. It is helpful that it is so warm out right now because when I would walk out from my treatments during February and March my hands would sting just getting to my car. I personally don't recall much in the way of issues with my feet with the cold sensitivity, but boy are they making up for it now with the neuropathy. Reaching in to the freezer to grab ice will have a burning sensation kind of like that frostbite feeling. Just warm your hands up under warm water or buy a microwaveable gel heat pad you can hold in your hands and the sensation quickly goes away. That's how you distinguish cold sensitivity from neuropathy--cold sensitivity will dissipate once your hands/feet/throat warm up, but with neuropathy it is a 24/7 feeling.

Feeling a little off sounds about right all things considered, but overall doesn't sound like you had a bad first round so that is good! And as for that numbing cream, yes, slather it on and put it on about 45 minutes before you know you will be getting your infusion started (too much or too little time with the cream and it loses it's efficacy). Not sure if you did this or not, but that Saran Press n Seal is best way to cover up the cream so that you can have it over your port to soak in a bit, but not get the cream all over your clothing.

Hopefully your time with the pump will zip by! Let us know how you do after disconnect, will be thinking about you this week!

[Pita]

Your port is probably sore since it was put in so recently, I had mine hooked up today for the first time since June 15, held my breath, it went in and over in an instant, Onc Nurse is real quick. Be careful with that numbing creme you don't want any bacteria getting into your port, my Onc won't let us put anything to numb... he says they are not sanitary after the first time use. Make sure the Onc Nurse cleans your port thoroughly with alcohol while wearing new rubber gloves. I think that will probably wipe off the cream.
Took a while for the neuropathy to kick in, yes sore throat, gargle with salt water helped me and Binotine. My pump doesn't bother me, it doesn't hum, it makes a tiny click when it releases a drop and the only way I know this is because my cat hears it and he tries to chew on the wire.

You'll be fine, first day is always the hardest, drink lots of water and try to eat every few hours. Prayers and hugs to you...

[Stewsbetty]

Hello, on the same journey. Just started round 2 today. My first round went pretty well. No nausea throughout. My cold sensitivity did kick in the first day both last and this time. Have to drink warm water the first couple of days or I feel like I am swallowing gravel. And tingling in my fingertips touching colder things. Felt it when slicing a tomato that had been out of the fridge for an hour. I guess I am lucky that I don't have a noisy pump. I have the balloon type and haven't heard a thing. Last session my mouth got that rough, burnt feeling around day 3/4 which lasted for about 6/7 days. It was annoying for swallowing pills but didn't but other than that. I had some difficulty with constipation/diarrhea throughout that I am hoping I can figure out better this time.
So not a fun journey but not too horrible for the first round. Best of luck too you!
Beth

[Marylandmaniac]

Thanks Everyone!! This is a wonderful board and I am so grateful I found it and you all. Last night went ok. When I first turned off the lights and tried to fall asleep I got nervous. I thought what if something bad happens when I am asleep?? Everytime I heard the beep from the pump I swear I could feel the chemo going in me. Yes I am weird. lol I went down and took the Ativan (think that is the name) for the anxiety and sleep. It must have helped because I was able to sleep. Woke up this morning feeling ok. I did notice some tingling in my fingers while I was making coffee but now it is gone. I feel like that is the story with me. Things pop up but then go away. Then again maybe I am just being a hypochondriac. I will let my doctor know what my experience is. Hopefully it stays this way and things are manageable. I will try the baking soda. My mouth feels okay now but I do want to stay on top on this.
My husband wants me to go to the gym with him today if I feel up for it. At first I said no way. Maybe it is a bit vanity but I don't want people at the gym seeing me slowed down and wearing this pump. But maybe I should go and just walk on the treadmill. Maybe it will make me feel like my old self. Hmmm, I will see how I feel when he goes and decide then. Did you all work and workout or walk while you had the pump hooked up?

[AnnClare]

Sounds like you're doing well so far. That's great! As others have said, getting that first round under your belt is helpful because there's SO much fear of the unknown at first.

Ah, the pump. I call mine the whiney bastard. I'll be getting FOLFOX round 10 this weekend. I can say that, unfortunately, the side effects (mainly tingly hands & cold sensitivity) DO increase as you go. My first few rounds, the cold sensitivity only lasted while I was on the pump. Over time, they've begun to last beyond disconnect day. I didn't really get tingling/neuropathy until around cycle 7 or so. Fatigue has also increased, but I'm still working as a massage therapist (aside from infusion & pump days - those days I only work the desk). At first, I was going for daily walks, even with the pump, but as summer fell upon New Orleans, the heat & humidity began to make me feel a little weak. Best advice is listen to your body. DO NOT push yourself. Now I tend to do light exercising at home, in the A/C, but I've even let that slide a bit. I intend to resume my active lifestyle after my reversal surgery. (My ileostomy makes some moves/activities uncomfortable - grr. So frustrating.) I think walking on the treadmill would be a good option for you, especially if you live someplace hot & muggy.

Biotene is a great mouthwash. I was using Listerine until about round 3,then it began using Biotene because the alcohol in Listerine was starting to sting. Not cool. (Tom's of Maine is another one I could tolerate well, but I prefer Biotene at the moment.)

As for fatigue, I'm the most tired by the day of disconnect. I've also started to feel "off", as you mentioned, and even a bit out of it after cycle 7. I was bouncing back the day after d/c, feeling like myself, but round 9 I still felt a little tired the day after I got d/c'd, so I kept my workload light that day.

My onc is great about anti-nausea meds. I made a HUGE point prior to starting that I cannot, CANNOT, be nauseous. I wear a Sancuso patch (apply it the night before infusion day), and prior to FOLFOX, my pre-meds include Emend, Zofran, and Ativan. I also have Zofran & Ativan to take if necessary, but knock on wood, I've not had to use them. Sometimes after Tx, my appetite wanes a bit, but I've not lost any weight (have gained a few pounds, in fact). If queasiness is something you deal with, or are afraid of (like me - I'm such a baby!), be sure to ask your onc about anti-emetics prior to infusion. They can make ALL the difference. You're dealing with enough as it is - you don't need to add a shaky tummy into the equation. And yes, Ativan is great if you can't sleep. So far, I've only had it prior to my infusion, but when it kicks in I can tell - I have to fight to stay awake.

I'm sorry you have to be here, but glad you found this board. It's been a life- and sanity-saver for me. There are SO many wonderful, knowledgeable, supportive folks here. Please feel free to post any and all questions you have. Private messages are great, too, if you happen to find a member that strikes a chord with you. Sometimes I don't want to put ALL my business out there, but can still gain insight from others via PMs.

And I'll tell you what so many people have told me: you can do this. It gets sucky at times (mostly emotionally, in my case - chemo is SUCH a mind-f***), but you'll make it through.

[zephyr]

The cold sensitivity hit my mouth on the first day of the first infusion. At that time, it was only in my lower teeth and jaw, even with room temperature foods. Lasted about 30-60 seconds. After swishing something warmer in my mouth, kind of warming it up, I was ok to eat after that (but no cold). All of the sensitivity went away after about 5 days. This second round, same thing but also now the tongue is tingling and the throat is sore. Same solution seems to work. Also, now it's in my fingers just a little. I went to get an ice cube last night to cool down hot tea and I was ZAPPED. Not painful but you'll notice it! Like a little electric shock.

As for the pump, once I made up my mind that the chemo was my friend - more than that, one of my strongest allies - instead of poison, the pump became both tolerable and oddly comforting. It doesn't bother me; it's sort of white noise (audibly and physically), maybe an electronic teddy bear at night. When I wake up during the night, I sometimes wait to hear it to make sure it's working - that it's on the job! - and as soon as I hear it, I fall right back asleep.

You didn't ask but one more tip I learned here, in case this is something that hits you: start taking stool softeners about 3 days before your infusion and continue taking them until you don't need the anti-nausea meds and you'll stay ahead of the constipation from the anti-nausea meds. I prefer Miralax but there are others. The anti-nausea med they give me during the infusion lasts about 3 days and then I need to do something else (I'm trying Sea Band and ginger tea as an alternative to the meds, fingers crossed). The constipation can get very severe very quickly, in my experience. Think glycerin suppositories if you get into a bad place (advice from my gastroenterologist).

Hope this helps.

[AbbyDoo]

Hi sorry you have to go threw this.
Sour lemon drops, I think they were called lemon heads are great.
At your local home improvement store you can buy a package of ten cotton gloves. They come in brown and white and are about buck apiece or less. If you wash then they will shrink down and be real comfortable.
Hang in there,stay positive

[jburke9283]

I am hopefully counting off the last three of 18. The biggest challenge was taking a shower, but that also worked itself out. I hope you got a spill kit, my pump finally sprung a leak and it was the wrong time for me to remember to read that book! If the pump becomes a pain, talk to the onc nurses there are a number of types of bags and you may find something that is comfortable to use.

Surprisingly I did have a bit of a allergy last treatment, I had never heard of that reaction. The nurses were great and like everything else, you never get the full story about stuff until it hits you in the face.

Worst complaint is my companion Schnauzer hates the pump, growls at its motor and refuses to be my friend while I am attached.

Everything you get thru makes you stronger, so enjoy the naps, and blame everything on chemo brain!

Regards,

[LPL]

Yes jburke9283 - You are So right when you say:
" like everything else, you never get the full story about stuff until it hits you in the face."
Steroid Induced Hyperglycemia sure 'hit' my hubby hard. He ended up needing hospitalization 3days - he is now on Insulin

I had read it was good to drink a lot of water before & after chemo - hubby had NO problem doing that!!! And we thought the fatigue & loosing weight was chemo side effects ... Sigh.

Later (of course.. ) I found this info:
" Glucocorticoid-induced hyperglycemia is common in patients undergoing cancer treatment ... We recommend that all cancer patients receiving gc be screened for hyperglycemia at least 4–6 hours after gc administration." 2013 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3851349/ .

So my recommendation to you Marylandmaniac is to Please make sure You & the medical staff check your glucose!!

Good Luck to You /LPL

[Marylandmaniac]

The cold sensitivity hit my mouth on the first day of the first infusion. At that time, it was only in my lower teeth and jaw, even with room temperature foods. Lasted about 30-60 seconds. After swishing something warmer in my mouth, kind of warming it up, I was ok to eat after that (but no cold). All of the sensitivity went away after about 5 days. This second round, same thing but also now the tongue is tingling and the throat is sore. Same solution seems to work. Also, now it's in my fingers just a little. I went to get an ice cube last night to cool down hot tea and I was ZAPPED. Not painful but you'll notice it! Like a little electric shock.

As for the pump, once I made up my mind that the chemo was my friend - more than that, one of my strongest allies - instead of poison, the pump became both tolerable and oddly comforting. It doesn't bother me; it's sort of white noise (audibly and physically), maybe an electronic teddy bear at night. When I wake up during the night, I sometimes wait to hear it to make sure it's working - that it's on the job! - and as soon as I hear it, I fall right back asleep.

You didn't ask but one more tip I learned here, in case this is something that hits you: start taking stool softeners about 3 days before your infusion and continue taking them until you don't need the anti-nausea meds and you'll stay ahead of the constipation from the anti-nausea meds. I prefer Miralax but there are others. The anti-nausea med they give me during the infusion lasts about 3 days and then I need to do something else (I'm trying Sea Band and ginger tea as an alternative to the meds, fingers crossed). The constipation can get very severe very quickly, in my experience. Think glycerin suppositories if you get into a bad place (advice from my gastroenterologist).

Hope this helps.

Hi Zephyr
I think you are right about thinking of chemo as a friend and ally. Maybe a mental switch is what I need. I have been so focused on the negative that I am forgetting the reason for doing this in the first place.
I have been doing stool softeners since I got diagnosed. GI recommended it right away and I take them every day. The nurse also warned me about the constipation issue. So far I just find that it is loose and bloody. Sorry if that is tmi but if I can't share it here where can I??? lol
I will make sure I have the glycerin supposities handy though.