Trouble breathing with FolFox

[Julie YW]

Has anyone had issues with breathing as a result of the cold sensitivit brought on by Oxaliplatin? I just got round 4 yesterday. This morning while walking my daughter to school in the fall air I started having tingling in my feet and then hands and then a wave of nausea (which I was surprised by since I just got the Emend yesterday) and then I had light sensitivity and a heavy feeling around my eyes. And then I had a tiny cough which resulted in me wheezing as air went through my throat. It was a bit scary and lasted for a couple minutes. It reminded me of the time some boiled egg yolk went down the wrong way and I was wheezing for air. I don't have asthma. The oncologist had me come in right away. All my vitals were good including my oxygen levels. He concluded that this was a result of cold sensitivity which makes sense to me. Has anyone else had this?

I think going forward I'm going to have to be more vigilant about keeping my hands and feet warm and most importantly my throat. Should drink more hot liquids. The onc gave me 30 minutes of magnesium and calcium infusion. There are conflicting studies about whether this helps with the neuropathy. I figured there's no harm so I agreed to do it. Has anyone else had this infusion?

I went to a cycling class after the infusion to test my breathing function and it's fine. The exertion also warms up my body which really really helps with the neuropathy.

Julie

[chrissyrice]

You have a great doctor! Not only did he take time to see you right away, he gave you those awesome IV fluids.

Yes, I had cold sensitivity and kept a scarf over my nose and mouth when going outside. Thankfully it doesn't get too cold here in the Atlanta area.

Plus the fluids were so helpful and gave me better quality of life during chemo.

[Cb75]

I did. I found tat it would make me feel like I couldn't breath and sck to my stomach. Just keep warm. Use a scarf or ace ask thing that you use when skiing that covers your mouth and nose.

[Voxx66]

Some people get this. I get the sensitivity but not like that. The worst that has happened is that I took a big swig of ice cold Coke out of my beer freezer because frankly I forgot I was going to let it warm up some and my esophagus closed up. I could still breath but couldn't swallow. I tried to convince it I wasn't actually swallowing liquid nitrogen but apparently it didn't believe me.

[Voxx66]

I can also desensitize out of the worst effects but nothing seems to help below a certain temperature range. Was trimming some chix (chicken. Please read as chicken ha ha) breasts the other day when I thought most of the effects were gone and they were wet and partially frozen. Oh my. I could have taken the pain but I keep my knives razor sharp and it just wasn't safe. Had to go find some thick rubber gloves to finish the job.

[orcasres]

My FOLFOX took place during the winter and I definitely had sensations like that. The sensitivity to the cold was severe (could not touch granite kitchen counters at home for two days) and on the way home after infusion on the ferry, I had a hard time breathing and swallowing. I was sure I was going to choke.

For me the breathing issues went away the day after infusion, but I remember how frightening it was when it first happened.

Lois

[kellywin]

Julie,

Yes, I had this twice. The first time was right after my second infusion of Oxi (I was on Xelox). I took a sip of water (room temp) and coughed, just a tiny cough, and I immediately couldn't breathe. I was wheezing like I had inhaled liquid. I assumed it was because the water was too cold, even though it was room temp. It scared me, but I didn't think anything about it because I had been prepared from reading this board about the cold sensitivity. Flash forward to my 5th infusion. Right after getting out of the chair and walking out, I took a fairly deep breath because I was having a hot flash and felt kind of queasy. Apparently, the air in the infusion room was too cold (because it was about 110 degrees that day), and I got the same reaction. Then at home, the same thing with the sip of water, a little cough in which I breathed in some cool air and bam, I couldn't breathe. It scared the shit out of me because I was by myself. I got myself to the bathroom (I was upstairs in my bedroom) and turned on the hot water, I thought I was going to die before the water was hot enough, drank some hot water and that immediately fixed it. It wasn't from the drinking, it was from taking a deep breath of cool air. I told my oncologist before my next infusion (which was going to be my last one anyway). He took me off the Oxi. He does not like that side effect at all. So make sure you tell your Oncologist if it happens again.

The cold drinks and food you can stay away from, but when it happens from just breathing, it's scary.

[CRguy]

All my vitals were good including my oxygen levels. He concluded that this was a result of cold sensitivity which makes sense to me. Has anyone else had this?

Sounds like PLD = pharyngolaryngeal dysesthesia, a very well known oxaliplatin neurotoxic effect.

....may feel like their throat is closing and they cannot breathe, although breathing isn’t really affected (pharyngolaryngeal dysesthesia).

IF your docs / nurses did NOT already warn you about these, get on their case and make them give you a run down of things to watch for and avoid. This is EXTREMELY important, as life threatening hypersenstivity ( allergic ) toxicities can also occur and may mimic some of the non life-threatening ones early on.

FightCRC has a pretty good info page located HERE.

Stay WARM on Oxi !!!!!

Cheers and best wishes
CRguy

[nitebreez]

Julie,

"So make sure you tell your Oncologist if it happens again."

...meh,..my ONC didn't seem very fazed when I related my experience. I had just finished my 5th round,...when the too cold air-conditioning in the chemo room made my hands draw up painfully into a "claw" position. "You just need to be drinking more water" she says. Keeping hydrated will lessen the chemo's side effects, she said.

So I got though with my 6th round,...and hands draw up again. Never mind that I'm floating in liquids. On the way home on too cool, air-conditioned bus,..the claw effect happens again. (Not good when trying to get hold of bus ticket with claws.)

[kellywin]

Julie,

"So make sure you tell your Oncologist if it happens again."

...meh,..my ONC didn't seem very fazed when I related my experience. I had just finished my 5th round,...when the too cold air-conditioning in the chemo room made my hands draw up painfully into a "claw" position. "You just need to be drinking more water" she says. Keeping hydrated will lessen the chemo's side effects, she said.

So I got though with my 6th round,...and hands draw up again. Never mind that I'm floating in liquids. On the way home on too cool, air-conditioned bus,..the claw effect happens again. (Not good when trying to get hold of bus ticket with claws.)

The claw hand is definitely irritating, but I wasn't talking about hands or feet or the cold sensitivity from eating or drinking something cold. I'm talking about breathing. It's a very different thing to just try and breathe and not be able to. I brushed it off thinking it was no big deal, but my Oncologist disagreed. He's been using Oxailiplatin since it was experimental in the testing phase so he's well aware of the side effects, but the breathing part he does not like, he's had previous experience with patients with that and it's something he keeps a very close eye on. I can't imagine it it would have been winter. For me it was really scary.

[karguy]

I had the hand,and foot symptoms when doing the chemo cocktail but be careful in the cold.I had trouble breathing,and when the doctor checked me out they found I had pneumonia.Be careful going out in the cold.

[nitebreez]

I had a little trouble with the breathing thing, also. It wasn't too much at the time,....but since I had no clue what was happening, it scared me a bit. If it was like you described,....I'd be worried big time too! Glad your onc was on to the Oxy, and took action.

[flatoutjan]

I have had the same symptoms as you. It feels horrible! I was on my way home from my first chemo treatment just recently and we stopped to get something to eat. Forgetting all about the warning of avoiding cold from the nurse, I ordered a large diet coke. Took a big swallow and immediately my throat closed up and it felt like I have a mouth full of Pop Rocks going off in my mouth. I keep thinking I can reach in the freezer and pull out some chicken, throw it on the counter before the cold hits, but I am always wrong and it really hurts!

[Voxx66]

As to the calcium and magnesium, I doubt if it hurts but the newer studies are fairly clear and consistent. I think it is unlikely to help but can't be ruled out either. For me, that isn't good enough to keep me in that chair an extra 30 minutes.

[GrouseMan]

The original FolFox protocol used the Ca and Mg infusion, but its been discounted pretty much lately. I asked my wife's oncologist why they didn't do this infusion, and come to find out his oncology practice (large one) did do their own study, and found that with their patients it really made no difference one way or another with regards to protecting against neuropathy. So - They stopped using it to save their patients some time in the chair. I was rather dubious about the extra magnesium because its not well absorbed to begin with. Any excess is just excreted. Its not stored up or used unlike calcium in the bones. My wife continues to take her own calcium for her bones to prevent osteoporosis along with plenty of vitamin D. I am thinking that the Vitamin D might be a better supplement for the neuropathy as well. I have a friend that was in an auto accident some time ago. She had a lot of back and other types of pains afterwards, and her doctor checked her vitamin D levels. Found out they were very low, so they put her on Calcium, Magnesium mega doses of D for about a year. Her pain subsided quite a bit by doing this. Apparently a lack of vitamin D can result in some neuropathic pain. The Magnesium needs to be taken with the calcium but that's so its not depleted or supplanted by the calcium. A typical multivitamin likely has enough I would say. The D you might want to punch up some.