The Colon Club

Ends, like at the 46 hour mark easier or harder? Im set to start chemo on Monday and have the pump until Wednesday and iv read how the day that its unplugged so to speak is kinda hard on a person. Im thinking that i could start it on Wednesday and have it unplugged on friday so then id have the weekend to get ‘back to normal’ for the following work week.

Does anyone have a comment as to which is better or if it matters?

Thanks a ton
Kathie

It depends on when you get the last " hit" of dexamethasone.
Last year when I was doing chemo for NSCLC , I reluctantly agreed on 8 mg on infusion day . I had a bottle of dex orals ( 4 mg) which I was supposed to take on days 2 and 3. Instead of 8mg I took 4mg on day 2 and nothing on 3. It was a steady drop off and was a breeze.

My worst day was the day after disconnect, although the extreme fatigue started the evening after disconnect and persisted for about 36 hours before gradually improving.

My son had his 8th FOLFOX infusion yesterday...4 more to go. He wears the pump for 46 hrs afterwards.

In the early weeks, he felt better once the pump came off. Now as he is more into the regimen, his window of feeling pretty good is getting narrower. He has fatigue and some nausea into the middle of his non-chemo week. Neuropathy has kicked in also. Everyone responds differently so your experience may be vary from his.

So far I've found that my days of feeling rather blech are mostly the two days after the pump is removed. So far, no nausea at all, but fatigue.

But everyone is different. I think that the advice to drink a lot of fluids, especially on infusion day and while on the pump, is important in flushing that stuff, including dead cells, out of your system.

Day of disconnect was like a light switch for me. I'd be disconnected and within 6 hours be rendered unconscious and confined to be for 36 up to 72 hours. With just enough time awake to eat, drink, brush teeth and use the bathroom. Then things always improved until the next cycle.

I agree fluids are critical. My nurses had me drinking 150 ounces of water per day. Felt like I was constantly sipping and chugging water/tea.

my husbands worst day was day 4, meaning the 4th day after he had his main infusion. Then he would start to feel better each day till he got hit again. Towards the end, his days of feeling poorly increased. It's all accumulative!

Thank you to everyone who has given advice and shared their story, i suppose il just get through it either way. If im gunna be sick then i will and il pray that i dont.

We will see.

DH had "nap day" on his "unplug day". He'd get up, eat a little, nap, get disconnected, nap, shower, nap...by dinner time he was better. Next day he was tired but managed to work 1/2 day.

I will second the drink a lot of liquids...water, flavored water, tea, lemonade, etc. If you are getting OX along with the 5FU, be careful of cold stuff.

Tell your care team of any side effects early so they can help you.

M

Days 2 through 4 seemed to be the worst for me. I don’t remember ever feeling bad on a weekend (Monday was infusion and wed was disconnect).

Take into consideration what days you will be working. My employer let me take off all of the infusion weeks, so I chose to do Monday as my infusion day. This had 2 benefits, 1) I could still enjoy my weekends because I was feeling better by that time and 2) I would be able to call my oncologist if I had any bad side effects after disconnect . My oncologists office was closed on the weekend so I wouldn’t be able to call then if I disconnected on Friday.

If you have to work on infusion week, then possibly starting on a wed is better so you are not missing as much work.

Ok, so I had my port put in this last Thursday and started chemo today. I have been home for just about an hour so nothing tremendous to report. The day was long as it was my first treatment and it did go well so far. My right chest, where the port is, is still tender and is uncomfortable. Breathing especially deep breathing also is uncomfortable, im told that is normal. Also that it will get better.

I sure appreciate all the posts to help me with my anxiety about this journey I have begun. I will posts again when i have the pump removed and as I progress.

Prayers and hugs to all
Kathie

Tdubz wrote:Days 2 through 4 seemed to be the worst for me. I don’t remember ever feeling bad on a weekend (Monday was infusion and wed was disconnect).

Take into consideration what days you will be working. My employer let me take off all of the infusion weeks, so I chose to do Monday as my infusion day. This had 2 benefits, 1) I could still enjoy my weekends because I was feeling better by that time and 2) I would be able to call my oncologist if I had any bad side effects after disconnect . My oncologists office was closed on the weekend so I wouldn’t be able to call then if I disconnected on Friday.

If you have to work on infusion week, then possibly starting on a wed is better so you are not missing as much work.

I had mine on Wednesdays and that worked well. I used to have labs before the infusion but it sometimes took a while for them to come back so I switched to getting labs on Tuesday (any time) so that I could start earlier on Wednesday.

On disconnect day I always got 2 hours of fluid through my port...AND the next 3 days after. Drink as much as you can, but if you feel really lousy, ask them about hydration.

I worked through chemo. Only took Friday, every other week off. Used that weekend to be as relaxed as possible. Went back to work Monday, that was the toughest day.

Well with first chemo yesterday, last night went well as for sleep but i was up early so that stinks. I do have a headache and am aching through the back of my head and shoulders - i had this yesterday and some of the achiness started on the weekend so im thinking its from stress and the anxiety so hope it goes away with regular Tylenol doses.

I am at work today and do feel pretty good.

Thank you for the continued posts on how your journey took shape,
Kathie