did anyone see that truck????

[kbrown2b]

OMG!! I read over and over again about day 3, but HOLY SHITZLE!!! Days 1 and 2 were okay with only cold sensitivity!! When I woke up on day 3.. yesterday... I was doomed. My whole body felt like it was run over by a semi!! My head felt like it was going to explode, and i was soo weak.. even walking to the bathroom was exhausting.!!! I am a young mama, and stay in good shape.... i have NEVER felt that bad!!! Today is day 4, and I feel 80% better already.. my questions are for you guys:

Will I always feel that shitty on day 3?? Will it come and go between days 3 and treatment day again?? Do the symptoms get worse?? What can I do to make them better?? I started to get really down yesterday, but if I only feel that bad 7-8 days out of 6 months.. or maybe a little more... I can do this!! I HAVE to do this... Cancer really sucks doesn't it??

thanks for always being there for me.. sometimes my fiance looks so scared and lost!!

[Gaelen]

Kelley - I'd like to tell you that day 3 gets easier with each infusion, but for me, it always got worse. All the things you mentioned (except the headache, I was spared that) and for me, overwhelming fatigue. I am single, and during my first regimen (Folfox + Avastin), most of my disconnects were across town and 30 miles of highway and traffic at the main infusion center. I could not drive myself after the first week, I was *not* highway material. Someone had to drive me to disconnects on day 3.

For later regimens, I was able to switch my disconnect to the satellite office, which was only 1/2 mile from my home on low-traffic neighborhood streets. At 2 or 3 in the afternoon on a Friday, I could manage that, but barely...and it was out the door, down the street, into the parking lot, reverse and go straight home...nothing more. Once Dr. Personality sent me home from NYC with the equipment to self-disconnect a disposable pump...I'm a certified lab tech who used to place and d/c dozens of pumps a day. There was no freakin' way I could have done my own...I couldn't focus long enough. I called the satellite infusion center and they said 'c'mon in.' When I told them NYC had expected me to d/c myself, my nurse asked 'have they ever *seen* you on Fridays?' No, they had not.

In my early infusions, I'd be able to drive and feel pretty normal by Saturday - and then on Sunday, day 5, if I was going to have GI symptoms, they would kick in. As the infusions stacked up (7-8-12-16) the fatigue gradually persisted through until the following Monday morning and then afternoon. Chemo effects are cumulative, and the more chemo you have, the longer it takes to recover.

That said, I started with 2-3 bad days out of every 14 day cycle, and that progressed over nine months to 7-8 bad days out of 14 days for cycle 16. I didn't have 14 bad days until the second regimen (and the dose was adjusted lower, and dose frequency was reduced from three weeks on, one week off, to every other week.) Some people do have all bad days, but I had more good days than bad days for quite awhile.

Staying hydrated helps. Eric will be along directly to tell you that exercise helps, but frankly, if you can't even move off the couch or climb stairs without being so dizzy you'll fall down, then there's not much exercise that's safe to do, and you're better off resting to let your body recover and get rid of the chemo. I could exercise lightly on days off chemo (walking, yoga) and I slept on chemo days. That made for 11 days of exercise, and 3 days of sleeping, depending on how far I was into the cycle. Close enough.

[John S]

Water and exercise. Try climbing steps. When you go down them, you have no choice but to climb back up. Sleep is not bad medicine either. I am 4 days out as we speak, and am probably sleeping at least half the time. As I feel better, I try to do more. In the off week, get out and visit friends, go to dinner, see a movie, etc. Hard to get started, but once you rally not so bad. On the night before beginning again, maybe a special treat, like half a glass of wine or a weak margarita or mojito. Little rewards to look forward to. And yes cancer sucks. But the quality of life you have while in treatment is as much up to you as it is the side effects. Good luck.

[CRguy]

OMG!! I read over and over again about day 3, but HOLY SHITZLE!!! Days 1 and 2 were okay with only cold sensitivity!! When I woke up on day 3.. yesterday... I was doomed.

Yeah, BUT, we still be waitin' on Day 4 and FIVE, chemo Buddy !!
Gaelen didn't tell you the "day 5 rat story." Just keep your mind on the prize...be a "day 5 rat" who survives the treatment and wins the race ! You will figure out everone is a little different, but there are trends.

Hydration : gotta flush all those chemo and "helpful" meds out of the system.

Exercise : to the extent your body can handle it, but watch stairs and balance issues. Light stretches, relaxation breathing, yoga, Taiji, static core conditioning, walking, slow treadmill, exercise bike..are all great if you don't feel like doing full on gym sets.

Nutrition : small meals of good quality foods, appropriate for your own "GIT" issues (I generally avoid high fat-even if 'good fats', very high bulk, spicy etc. for a few days, then in moderation if I feel up to it)

Neuropathy : get your fridge 'n freezer gloves out, keep warm toes off cold floors. Avoid food & drink right out of the fridge. Avoid excess "trauma" to the hands/feet for a few days.

Journal : keep a journal of effects and events, and reactions to meds, so you can discuss with Oncs next time.
( e.g. the ibuprofen for headaches - Ok for a dose or two but don't take it long term if you are on other NSAIDs or Decadron for any length of time...that is why docs often recc'd tylenol. no decadron or NSAID interactions on the GIT health.... But if tylenol doesn't work for YOU, then they need to come up with another plan. )

Backup : lots of chemo buddies here with a great range of experiences BUT do not hesitate to call your chemo center / Onco with ANY question about your treatments or how you are feeling. Patients on chemo need to be more vigilant about even very simple day to day "living" issues, than the general public. If fiance isn't a hands-on advocate for you , and not everyone can take that role on easily, maybe have another friend around you can talk to, and post here as much as needed. just don't think "oh well it will probably be OK" and let anything go. We all get "used" to how we handle this whole ride, eventually, but should always be aware of the changes and concerns in our health.

Sense of humor : I don't leave home without it !!

Hope day 4/5 go better for you ???? Think I'll update my "Hi I'm FOLFOX thread..." for Cycle 3 and we can compare notes.

Stay strong on the journey
Cheers
CRguy

[jens22]

Hi Kelley,
I have to say that my first treatment out of 4 was my toughest. Day 3-4 in the recovery days...by 5 I'm back to work by 7 I'm back to normal. The cold sensitivty is diiferent for me with each treatment. I jsut go with warm and room temperature drinks, socks and balnkets at times. You'll get through this just like I will sister!

[nebraskamel]

My first day 3 was like that. But they gave me compazine as an anti-nausea drug and it just made things worse for me. So I thought the same thing you are thinking: How the @#$%!* do I do this for 6 months?!?!!! My next day 3 was much better with different anti-nausea drugs. The fatigue is like nothing you've ever felt before and hopefully won't feel again. The fatigue lasted the entire treatment regimen for me and did get worse. But on one of my day 3's I was able to get out of the house. All of the others I just hung around the house feeling lousy. But one of them around treatment 9 or 10 was easier than the others and I actually left my house. So there is hope along the way. Just remember to ask for "no ice" for any and all drinks. Plan absolutely nothing on day 3's. Remember that this is TEMPORARY. Even though neuropathy is still with me 3 1/2 years out, I'd still rather have neuropathy than cancer. I'm so thankful that these drugs exist and work in our favor...mostly in our favor with a few...ok, several, nasty side effects. Hang in there. Get support. Vent all you want to us because we get it. Keep a sense of humor.

[dianne052506]

kbrown2b,

Do you know what anti-nausea pre-meds were used at the start of the infusion? Nebraskamel mentioned a bad time with compazine, but I had decadron with Folfox, and day 3 was always rough because I was literally coming down from a steroid high. Because the steroid gave me a boost, when it was gone, I felt lower than low. There are several choices of antinausea meds, and the decision on which to use has to do with the side effects and how well each one works for the individual at holding nausea at bay. I hated the decadron, but I have to admit it worked. (YOu can usually tell if you've had a steroid, because your face is flushed on day 2.)
As you get through more rounds, you will find a pattern of the low points. And, as Gaelen said, unfortunately, the effects are cummulative, so as you get more in you, the high points won't be as high, and the low points will get lower. Keep that calendar in front of you and keep looking ahead. Now that you know what is "normal," it will be a little easier to deal with.
The two biggest things you can do for yourself are to keep hydrated and rest as needed. However bad you felt on day 3, it is nothing like you will feel if you get dehydrated. Try to keep sipping on something all day, and rest any time your body tells you to rest. I truly admire those who continue to work and go through life as normal through their chemo, but not everyone can do that. My mom had to move in with us to take care of my family when I was on Folfox the first time. I had that little energy.
Hang in there. We'll be here if you need us.
Dianne

[starbuck30]

I didn't see the truck, but I think I got a partial on the license place. I'm pretty sure it was "5FU- something something".

CRGuy and Gaelen said it all about the best things to do to minimize the effects. I finished round #6 the Tuesday before last, and I just started feeling normal again maybe yesterday. For some reason though, nothing has been harder than my first treatment (probably because I was still recovering from my colorectomy and port placement surgeries, just a wild guess). I know how I'm feeling isn't uncommon, but I also know that there are others who breeze through this like it ain't no thing. There are two women at my infusion center receiving the same treatment (both are older than I) and they both come in and leave like, "Hm? What? Chemo? Oh yeah, chemo. I forgot I'm going through chemo, I'm running a marathon later you see." I don't know how this will continue to affect you, I will only say listen to your body. Also (and I expect Eric will probably be adding to this), if you can exercise, do it when you can, because it really can help you feel better, and there are studies that it can DRAMATICALLY increase the chances of survival without recurrence. Sometimes it pays to just try it for five or ten minutes to see how it feels, because if you can power through that, you can make it through the rest. But, like Gaelen said, if you're body is telling you "no frickin' way, are you KIDDING me?!", don't do it. Listen and rest. And every little bit helps. If all you can do is a slow walk down the driveway and back, go for it.

As for nausea meds, nothing works for me but Emend. God bless that stuff.

I hope the rest of your treatments go well. If they get harder, just remember it's a worthy cause. And come on here and vent your heart out. We're here for you. We get it. And we're all pulling for you.

With much love and best wishes,
Starbuck

[Jen]

Day 3 sucks because you have gotten the maximum amount of chemicals - but this day passes and each day will be a lessening of the chemical and you will metabolize it and feel better. Drink a ton as you know...I didn't once and slept too much and it was a very bad thing I used to almost celebrate the chemo leaving my body. You will get used to the cycle and plan your days around it...I even planned vacations starting on Day 6 because travel sucks anyway and by the time I got there I could settle for a day (who feels good the day after flying anyway) and then feel better the days following. Treatments 1-6 I had a really good last week before chemo started again. 6-12 got were more difficult to say the least. We're all with ya.

[pstolarski]

I can't say enough about exercise. I well be one of those exceptions but other than poor taste on days 1-3 and
the cold sensitivity I had very liitle trouble with Folfox. I bought a stationary bike and rode it for 30 minutes and 9-10 miles every other day and lifted some light dumbbell weights almost every day. On my in between week I played 2 hours of basketball on a Thursday, plus my regular routine. The only days of work I missed was the Wednesday infusion day. Day 3 was always the worst day but usually things got better after that.

While I know this level of physical activity is probably the exception push yourself to do as much as you can. Your body will thank you when your done and it will make the recovery easier.

Also keep a journal. I used a program on my iPhone which I always had with me so I could note things as they happened. I could sync it with my computer and at the end of the cycle I would go back and review it and have all the things I wanted to discuss with my onc right in front of me. I still use it today but not as frequently.

I never thought I could do chemotherapy but the time really does go by fast and you will get into a rhythm. Take it one day at a time and adjust as you go, before you know it you'll be done and giving others advice on how to get through it.

Try to stay positive and think forward, you will do this!

[turtlemama77]

Disconnect day was the worst for me, and I think that was day 3. I found that if I could keep eating, really small meals, nutritious foods, the effects weren't as bad. The anti-nausea meds helped with that (emend and then kytrll). I also found that it's true (at least for me) that if I pushed through the crummy feelings, the chemo did not push back.

Big hugs. It's hard, but you can do it!

[pleistocene]

This is a VERY timely thread for me. My husband is quickly approaching day 3 of his second postsurgery FOLFOX infusion (he had 2 infusions prior to surgery). I'd like to open this up to more discussion on specific antiemetics and antinausea meds. Jim up to this point has been taking care of his nausea using medical marijuana (and he is very specfic about which strains he vaporizes at different times of day. He has this down to a science more than anybody we have found to discuss this with). The only other drug he takes for nausea is Decadron and that is because it is given intravenously at the time of infusion. The MJ works very well. The only hole so far is that with vaporizing the effects only last about 2-4 hours, which won't get you through the night. He wakes up in the middle of the night to vaporize and have a little snack. If he doesn't do this he feels bad in the morning. The snack part is not because of MJ, but something we thought of because of my pregnancy sickness. A snack in the middle of the night would help settle my stomach from the nightly hormone/chemical build up and ward off morning sickness. I'm not sure why morning sickness isn't a phrase also used for chemo.

Anyway, long story longer, he was given 4 different anti-nausea drugs to take home:

1. Decadron (dexamethazone)- The main side effect the pharmacist mentioned is that it will keep you awake since it is a steroid. Someone earlier on this thread noted that there is a "coming down" effect which is unpleasant.

2. Compazine (prochlorperazine)- The main side effect the pharmacist mentioned is drowsiness.

3. Ativan (lorazepam)- The main side effect the pharmacist mentioned is dizziness.

4. Zofran (ondansetron hcl)- The pharmacist mentioned that this is the one everyone likes and didn't mention serious side effects. However, she noted that insurance companies usually on pay for a limited a number of these and that people are always asking for more than their insurance will allow. My husband got 9 of these pills compared to the 30 pills each of Compazine and Ativan.

Just because Jim's using the MJ doesn't mean we are against using effective treatments (evidence based medicine and integrative medicine is the key). So, he will probably try Zofran if the MJ isn't working as good as usual sometime. Therefore, my question for the board is - What do you like best? I saw a few people mentioned emend and one mentioned kytrll.

My best to you all and especially all you day 3ers.

[Gaelen]

emend and kytril both rock. I wouldn't do an infusion without 'em.

[pstolarski]

I used aloxi. Not a lot of people talk about it here on the board but I used it the entire time. I had to take 2 compazine 1 time after my 6th treatment and that was it. Otherwise it controlled my nausea the entire time. I could eat pretty much normally during the treatment other than certain foods which did not taste very good.

[SkiFletch]

I used aloxi. Not a lot of people talk about it here on the board but I used it the entire time. I had to take 2 compazine 1 time after my 6th treatment and that was it. Otherwise it controlled my nausea the entire time. I could eat pretty much normally during the treatment other than certain foods which did not taste very good.

My onc was a big fan of Aloxi too and MAN does that stuff work. I could always tell when it was wearing off and would have to pop a couple compazine to get me through the nauseous part, but I made it fine that way. Kelley, your day3 story sounds pretty typical. It sucks, true, but you'll find yourself feeling better in no time. And as someone said on here, it's all temporary