Winter and Chemo, capox (xelox) or folfox. Precautions, Tips, Expectations.

Hi Alan,

Can I just say I think your doing so well with your preparations.

My mum had chemo for two years during winter. It was the really bad winters with snow up to our knees here in Scotland. We took a common sense approach as I have two kids who were at primary school at the time. Anyone with a cold was invited to stay away. If I heard someone even sneeze in a shop we politely walked off in the other direction. We all discreetly worn scarfs over our faces. And lastly we all carried anti bac. Amazingly enough mum never caught so much as a cold. My dad had just had a stroke so I needed to be well to care for them both. It went well.

In terms of activities. I would be prepared to be flexible till you get into a pattern. We have people like Tull here enjoying sport whilst on chemo and others who cant.

The other thing my mum found helpful was forward thinking by project planning. Weekly and longer term. Helped keep the focus.

All the very best,

Court

Many thanks Court for your reply, appreciated.

The point you make re avoiding folks who sneeze is a good one I did think of getting a nose mouth masks similar to the one people in Japan who have a cold wear amask so as Not to sneeze on everryone else!  Wouldnt that be something here.. :)

Regards and best wishes

Alan

Hi, I did 12 rounds of folfoxiri. One thing I found handy when cooking, doing kitchen stuff etc was wearing woolly gloves with disposable gloves over the top- meant I could get my hands wet & cold without them going tingly. That's my top tip. I've also recently

discovered 'hotties' which stick onto your socks and keep your feet warm for hours. Doesn't help the neuropathy now as it's not cold-dependant but pleasant anyhow!! 

Also, protect your eyes if you go out on a cold windy day- I had a lot of eyeball weirdness which was highly unpleasant

Alan,

I spent last summer/autumn on the same stuff i think (my oncologist called it OxCap...Oxalyplatin and Capcitebine apologies for spelling).

I didnt get told about the cold issue until the day i was sat in the day unit ready to be poisoned!

I believe i got off lightly whilst on that treatment (if thats at all possible in our situations, but i expected a lot worse). Obviously everyone reacts differently, but i managed to avoid nausea for the most part, my biggest issue was the coldness. Despite it being summer i still felt the effects.

From Day one to anything up to Day ten (i was on a 3 week cycle, IV and 2 weeks of pills then a week off), i couldnt touch anything cold, or drink anything cold....not ideal in the summer when you fancy an ice cream! I learnt to cope pretty quickly, and got used to drinking warm water and letting the wife make dinner (fridge and freezer were no go areas without the oven gloves on). I always found if it was my hands that were getting cold, running them under the tap would solve the issue in seconds (same with feet if standing on cold bathroom tiles etc). The throat was a bit different as well, i got told the cold could cause it to close up, which initially panicked me, but i knew when i had gone on to cold drinks to early, and always tested the situation with a cup of tea beside me, as soon as i got a tingling sensation in the throat, a few sips of tea is all it took to sort it out.

I would advise always having a scarf to wrap around your mouth, this should help stop the coldest air getting in (cold air has the same effect as drinking cold water). I am a keen cyclist, but even cycling in the summer was a no go, i put this down to raised body temperature creating a bigger void between my throat temperature and air temperature more than the air itself being too cold, because i could walk around breathing just fine.

Another tip would be to get one of those thermal mugs, and take a flask of hot drink to treatment with you (or if the hospital has a cafe, pop in there and get a takeaway). When you come out the warm hospital having a hot drink might come in handy for your throat between the door and the car heaters.

I also had an issue with neuropathy (is that the numbness in hands and feet....i should really learn the words lol), but that didnt start until i finished my 9 cycles of treatment strangely. I wont lie it was quite bad to start with and in the almost 12 months since, i would say i now have 90% of feeling back in my hands (i used to use the tv remote as my guide, initially i couldn't feel my fingers moving over the different buttons and would have to look what im doing, now im back to changing channels without looking). My feet however arent as good, i still have quite a bit of numbness. I got told when you get to the 18 month point after treatment, thats the stage you will probably remain at, so i still have 6 months ish for more feeling to come back. In all honesty its a price im willing to pay.

With regards to swimming...again another thing i enjoy(ed), i got advised to stay away from swimming pools...a breeding ground for germs!

As this was my first trip into the chemo world, i genuinley didnt know what to expect, so to start with i didnt make any plans, set any goals or anything like that, i would say get a couple of cycles in, get to know how you feel and then you can decide what you want to do.

Hope all goes well for you, if you have any more questions specific to the treatment or about anything else, let me know!

Chris

Many thanks will check out the toe hotties also good idea with the gloves.  Many thanks appreciated 

Alan

Thanks Chris that is all very useful. You have illustrated a number of side effects I was aware but much more descriptive that will help me and others reading this. 

My Oncologist did warm me about the numbness, I said I've been learning the ukulele  and play in a group. Seems this with the cold feelings and nausea are the common problems to face.  But no gain without pain.

Did you try massage or exercise, any physical activity help relieve symptoms? 

I know I will be given a bunch of drugs to take home to help combat nausea etc. But the cold and numbness are physical manifestations of the bodies reaction to the drugs which you have to deal with. 

My hospital chemo dept have available reflexology, aromatherapy massage particularly for feet and hands.  I've already got my name down for as much as i can get

Worrying is any long term neuropathy, loss of sensitivity can be a real pain. Again I wonder what precautions  or actions can be taken to lessen the impact or help bring back the sensitivity. But then I suppose this relates to how much your nerve endings are damaged....I'm a bit concerned about this.

Many thanks again. Will no doubt have more questions

Alan

Hi Chris a question re cold drinks. 

Does this apply to cold food?

What are the physical problems you experience with cold  is it like brain ache when biting on ice or pain? 

I've ordered myself some material moisture gloves of eBay re touching things cold. 

Again is this a cold ache or a painful shock when touching things cold or walking past supermarket freezer section. Really seems quite weird and awkward during wintery snow showers, clearing ice of yr car windows.

Many  thanks

Regards

Alan

Alan,

I wouldn't say I ever got to a pain stage either in throat or hands and feet. It was more of a tingling sensation. With my throat, it was always a bit of a worry due to potential seriousness of it, so I never let it get far, and as soon it appeared I had hot drinks on hand. The hands were a bit different, it's not always as easy as stopping what you are doing. My hands went through a tingling sensation and then felt like they were locking up (had it whilst talking on phone a few times), I had the issue of cleaning ice off my car windows a few times, and I just had to either run round doing it quick, do it in stages with a break, or sit in car with heaters on until it did it for me.....on that note steering wheel won't heat up as quickly, so gloves are useful for driving.

I haven't tried any of the reflexology etc you mention, I have appointment on weds with oncologist and I was planning to ask if she could suggest anything to help, will let you know what she says.

With regards to cold food....I just avoided ice cream full stop, but I don't remember having issues with anything day to day, for example cold ham out the fridge in a sandwich didn't seem to be a problem....oh I avoided yoghurt out the fridge for the first week or so.

Apologies for the randomness of answers lol. I'm answering on my phone and keep scrolling up to see what you asked.

Like I said initially my numbness didn't appear till the end of the last cycle, so hopefully you can carry on with the ukulele for the foreseeable future.

Anything I've missed, let me know, hopefully we will have a mild winter!

Chris

Hi Alan,

I think most things have been covered here (gloves are a must if you need to use the fridge/freezer) but I would also suggest preparing some dinners for yourself in advance. I've just finished cycle 1 of XELOX, about to start cycle 2 on Tuesday, and have filled my freezer with meals I can just pop in the oven. My experience was that, during the first week of treatment, I had no energy to stand and cook dinner, and you have to eat food when taking the Cape (despite perhaps not feeling up to eating). Another little tip - my husband bought me a 2 litre water jug that I would keep filled on my bedside cabinet. This was so handy and meant that I didn't have to constantly bother him for refills of water in the first few days when i struggled to leave bed.

Sending you hugs and well wishes for the start of your treatment. Enjoy your holiday and try to put the chemo to the back of your mind, if you can. I've only completed 1 cycle of 4, which was unpleasant, but I'm still standing and got through it. How many cycles are you having? x