Rectal cancer (Stage 3A) diagnosed late June 2017

[NHMike]

Back home now.

The biggest side-effect during the infusion was having to pee twice - likely due to the D5W and the Oxaliplating liquid. I lost a little feeling in my fingertips and it takes a bit more effort to type and I have had some slight feelings of arthritis in my palms. I Went outside and felt the cold sensitivity due to the wind (it's about 40 degrees outside). I was covered except for my face so that's where it hit but I've been used to really bitter temperatures in the past due to the winters here so it wasn't too bad.

I drove home as my son was on a conference call and that was no problem. I got home and picked up a cold glass of water and the initial reaction was not quite pain but a lot of discomfort. I also picked up other cold objects and the cold sensitivity decreased as I held other cold things. My home office is probably 45 degrees right now so everything around me is cold. I wasn't brave enough to drink the cold water.

My wife brought me a bowl of chicken ball rice porridge and I had an ache - I guess it's that first bite thing that folks here talk about. It wasn't a sharp pain but something noticeable. I can taste the flavors in the porridge. I don't feel any tiredness though the nurse said that symptoms can kick in at any time. So, I'd say that the symptoms are as advertised but it sounds scary when others talk about it.

[veckon]

Back home now.

The biggest side-effect during the infusion was having to pee twice - likely due to the D5W and the Oxaliplating liquid. I lost a little feeling in my fingertips and it takes a bit more effort to type and I have had some slight feelings of arthritis in my palms. I Went outside and felt the cold sensitivity due to the wind (it's about 40 degrees outside). I was covered except for my face so that's where it hit but I've been used to really bitter temperatures in the past due to the winters here so it wasn't too bad.

I drove home as my son was on a conference call and that was no problem. I got home and picked up a cold glass of water and the initial reaction was not quite pain but a lot of discomfort. I also picked up other cold objects and the cold sensitivity decreased as I held other cold things. My home office is probably 45 degrees right now so everything around me is cold. I wasn't brave enough to drink the cold water.

My wife brought me a bowl of chicken ball rice porridge and I had an ache - I guess it's that first bite thing that folks here talk about. It wasn't a sharp pain but something noticeable. I can taste the flavors in the porridge. I don't feel any tiredness though the nurse said that symptoms can kick in at any time. So, I'd say that the symptoms are as advertised but it sounds scary when others talk about it.

This mirrors my first infusion with Oxaliplatin well. The fatigue did not kick in until 48-72 hours from infusion time for me. This worked out well since I timed it so I got infused on Thursday, could work Friday thanks to the steroids they give you, and would then pass out for the weekend.

[NHMike]

Just got the throat-closing feeling. This is where your throat feels like it is closing but it actually isn't. I can breathe just fine. I went to take a nap and the cold sensitivity is back more strongly. I suspect that this is due to sleeping under warm blankets.

[veckon]

Just got the throat-closing feeling. This is where your throat feels like it is closing but it actually isn't. I can breathe just fine. I went to take a nap and the cold sensitivity is back more strongly. I suspect that this is due to sleeping under warm blankets.

I also had this, but not so early on. The "solution" (it's not deterministic so don't expect a miracle here) is to drink plenty of (room temperature) water and reduce stress as much as possible. The autonomic functions of our body get messed up by both our psychology (stress=bad) and the deleterious effects of the chemotherapy itself.

[NHMike]

Just got the throat-closing feeling. This is where your throat feels like it is closing but it actually isn't. I can breathe just fine. I went to take a nap and the cold sensitivity is back more strongly. I suspect that this is due to sleeping under warm blankets.

I also had this, but not so early on. The "solution" (it's not deterministic so don't expect a miracle here) is to drink plenty of (room temperature) water and reduce stress as much as possible. The autonomic functions of our body get messed up by both our psychology (stress=bad) and the deleterious effects of the chemotherapy itself.

I agree on the water. The problem is that I am so used to cold water. I have bottles of filtered water in the basement and it's cold down there and that's where I usually grab it. I need to store it in the dining room or kitchen. I can ask my wife for hot drinks but I don't like to put her out. I am planning on going into the office tomorrow as there's a filtered water cooler/heater so I can get hot water on demand. I'm considering a coffee cup warmer too.

[Basil]

I kept warm drinks like water, juice and lemonade in the pantry. It was my stash and the kids had to keep out of it. By round two the symptoms may start getting to be old hat. They may increase a bit by degree as you go through infusions but it sounds like you've hit on all of our favorite party favors from FOLFOX! So, you got this. Just keep on going.

[heiders33]

Yes they get much more manageable after the first round. For me they’ve gotten progressively worse but it’s better knowing what to expect. I don’t go into the office for five days; I work from home. I keep a water bottle that keeps water warm and drink from a straw because my lips react.

[NHMike]

I kept warm drinks like water, juice and lemonade in the pantry. It was my stash and the kids had to keep out of it. By round two the symptoms may start getting to be old hat. They may increase a bit by degree as you go through infusions but it sounds like you've hit on all of our favorite party favors from FOLFOX! So, you got this. Just keep on going.

I need to leave a bottle of water - I'm just lazy in not going upstairs, filling a glass and bringing it downstairs.

A co-worker with Raynaud's uses the strategy of dressing as cold as he can stand it which resets his temperature range lower so that there isn't as much shock at slightly lower temperatures. I may give this a try.

I was at the supermarket and got hit by a blast of cold air and one of my eyes got stuck half-open. I later went over to the prepared foods that were under heat lamps and just stood there for a few minutes warming up my face and eyes. This stuff makes me not want to go to the gym tonight.

I'm tracking symptoms by day and severity to do trend analysis and I'll send a report to the Oncologist when all of the side-effects are gone so that we know what I'm feeling. My problem is that I often tolerate difficult circumstances and tough things out and that might not be the best approach with this drug.

[NHMike]

Yes they get much more manageable after the first round. For me they’ve gotten progressively worse but it’s better knowing what to expect. I don’t go into the office for five days; I work from home. I keep a water bottle that keeps water warm and drink from a straw because my lips react.

Absolutely.

I recognized every symptom that I've run into because I've read about each of them multiple times on the forums. I think that it's a lot better in terms of predictability and recognition if you immediately recognize something and record it rather than just wondering what something was.

[NHMike]

[veckon]

Looking great Mike!

I am a big fan of infusion selfies myself. It freaks Facebook out with my positive and joking attitude about it, which makes it all totally worth it.

[veckon]

I asked my wife how she kept my water warm enough to drink. She kept some unrefridgerated, and if it was a particularly cold would quickly heat it up in the microwave quickly.

[Atoq]

HI there! Looks like you have everything under control. Good luck with the first round!

Claudia

[veckon]

Is that the Firefox logo near where your port is?

[NHMike]

Looking great Mike!

I am a big fan of infusion selfies myself. It freaks Facebook out with my positive and joking attitude about it, which makes it all totally worth it.

The most common comment I got when I came back to working in the office after Neo-Adjuvant Chemo was that I still had my hair. So yes, it's fun to break stereotypes. Even my mother and sisters commented on that. The average person knows so very little about cancer and treatment, as did I before treatment. I attribute that to cancer being so scary and not portrayed as survivable on tv and movies.