Problems with Heat and Cold

[geeG]

Hi - I too relate to this hot & cold stuff … sometimes at the same time… trying to explain you have freezing feet (thick socks do help) while at the same time your top half is on fire so you have to throw the duvet back is hard to accept for yourself, let alone expect your nearest and dearest to understand… LoL … x

[Jomar]

Im a year into Tamoxifen and I am having an ok time at the moment, praying the worst is over but Ive been here before.  I have had airconditioning on and a fan all winter. (Cant have the window open as Im on the 5th floor and window opens out).  I still sweat profusely after I have eaten anything or laughed or walked etc but the insane hot and cold has eased off.  About 6 months ago I thought i was going to loose my mind over it.  Nothing inbetween just fire and ice.  It got to the point where it was so rapid at night I didnt know if I was putting clothes on or taking them off (and Im not joking).  Its the strangest feeling and you just cant describe it to anyone that doesnt know.  I have also suffered with crazy head heat. It feels like my actual skull is on fire.

Something I have found helpful is to take rehydration powders (Dioralyte or own brands).  I drink so much water during the night but these help with the salts and minerals lost during the sweats.

[shallon]

Hey mrs moomin I'm on tamoxifen (2 years) and I am hot and cold all the time. I've given away all my jumpers (cannot see myself wear them anytime soon). I live in vest tops and cardigans. My winter coat is left open at all times or half way done up. I sleep in a crop top and the window open. But hey who's complaining? NOT me. I do itch as well around my armpits which is really frustrating, get a rash ( like eczema) on my fourth finger on each hand strange I know.
At work I wear a short sleeve blouse, my colleagues think I'm crazy as I work part warehouse, part shop floor. I really hope this hot and cold faze settles down sometime soon. X

[alice45]

How interesting! Just discovered this thread: I finished treatment (6xFEC and rads) back in the summer, but since then have definitely noticed that the body's temperature regulation mechanism is not working properly. I'm also triple neg with no further meds, but the new normal certainly involves feeling unreasonably hot or cold at times. I also have some mild neuropathy in one leg, though didn't have taxotere so my oncologist denies all responsibility... I guess anything can happen after 5 months of poison, whatever it was!

[jannie13]

Im triple neg so no tamoxifen or anything else now I had fect and almost finished rads. The flushes are easing but every evening j get really cold..im wrapped up boiler on high and electric fan while hubby sits shirtless in shorts...so may not be the drugs your on now ladies.

[mary32]

Hi

I have found a gradual improvement over the last few weeks. I have been on tamoxifen since June 2013 and I would say things are better at the moment. I no longer find taking a fan with me essential and nights are better too.

I'm not sure if I can put it down to anything in particular. I change brands constantly as my chemist never seems to have the same one from one prescription to the next. I have also cut down on the alcohol consumption. I have also started taking 5-htp supplements which are supposed to help.

So I guess I would say persevere as things can get better.

Happy New year!

Mary

[Toughieone]

I'm feeling your pain!! Exactly the same for me. Finished chemo on 21st nov and started tamoxifen 19th Dec and I'm having serious temperature issues!! It's like my thermostat has gone wonky! Go to bed in thick pj's, a dressing gown, hat and slipper socks then wake in the night dripping with sweat and have to throw everything off!! I hope it's not a side effect of tamoxifen cos I'm on that for 10 years now! Good luck for you, I do think the layering works and an old style Fan in your handbag or by the bed. Oh and there's nothing better than the cold side of the pillow, bliss!! Xx

[SML1903]

Hi Mrs Moomin

I've just posted about feeling boiling hot or freezing cold but I am taking Anastrozole so thought it was a side effect of the medication. I started on the medication 3 weeks ago at the same time I began my radiotherapy treatment, Last booster tomorrow. Are you on any hormone medication? 

[Kess]

I have been on the Tamoxifen for 4 months now, and my nights, whist still disturbed, are better than they were. Not sure if the cooler weather has helped, but I tend to only wake once or twice with hot flushes now. Still have a couple in the day too, but mostly less severe than they were. Hopefully with time you will adjust too.

[BabyCakes]

Hi there, I'm shivering as I write this! I haven't had control of my body temp since starting tamoxifen in May this year. I am either freezing cold or really really hot. I'm learning to manage it although very frustrating at night with duvet either on or off. I have bought some M & S cool comfort technology pj's and they are brilliant. C.

[Nimbus]

Hi there,

I was feeling very cold at the end of my radiotherapy - about a month ago. Also occasional hot night sweats. I am on tamoxifen. However, as I gradually got past the worst of the fatigue, and have been able to be a little more active day by day (balancing activity with rests too), I have not been getting so very cold and the sweats are less frequent too. So I hope it may be the same for you.

J

[Mrs_Moomin]

Thanks Mary, Gilly and Kess. My layering strategy started today. I can't remember the exact expression but it's something like "a problem shared is a problem halved". In other words, without wishing this temperature control problem on anyone, it is comforting to know that other people understand my experience and that it is (yet another) of the after-effects of treatment, but compared to some, more tolerable or at least manageable. Best wishes to you all. I will think of you with your red fan, Mary, when I get hot but might reserve getting a similar one until Spring! Mrs M

[mary32]

Hi Mrs M

I have this problem too and have also had to remove some winter clothes from my list of what's wearable. Definitely layering is the way to go. I also have a big electric fan on my desk and take a beautiful red folding fan with me to meetings which I take out with a flourish when needed! It has got a bit better recently, not entirely sure why but I do think alcohol has an affect so I drink sparingly these days. At home I even resort to a hot water bottle at times....

Take care.

Mary

[Mrs_Moomin]

Hello Butterfly Thank you and other kind respondent for your comments. I am on Letrozole at the moment and I can't remember if extremes of hot and cold started with this. I was aware that neuropathy from Taxol could create sensitivity in ones extremeties and that hormone-targeted therapy could produce hot flashes but the hot feeling I get now seems different from the menopause. Anyway, thanks for your advice. Clearly, layers are going to be the way forward. It's just I shame that I have loads of long- knit tops and dresses, which I love, because it is trickier to strip off layers under these, especially at work! Regards from Mrs M.

[Butterfly318]

Evening Mrs Moomin

Are you taking any other medication,  i really struggle to moderate my body temp.  I have light blouse or cotton top on with a jacket and a scarf / shawl each day at work and spend the day putting layers on and off.  At home i just have fine cotton wrap  while poor hubby is sat there in Fur housecoat and sheepshin slippers.   When i get hot my skin also itches.   I thought this was a side effect from Tamoxifen.  I had this but much worse on Chemo and this lasted a while after.  i am almost two years on from the end of Chemo now.

Take Care    Gilly x

[Kess]

I too have hot and cold flashes. The hot ones are common. The cold ones I understand are a rarer side effect, but still "normal". I wear layers, and also carry a small hand fan for when I am really hot. I go from hot to freezing instantly - its quite frustrating!

[Mrs_Moomin]

Is anybody else finding big problems with body temperature? I finished treatment (radio after FEC and Tax) around 6 weeks ago. I have peripheral neuropathy in fingers and toes, which is not great but manageable. However, I am also finding that I am often either freezing cold or boiling hot and, when I get hot, my skin, particularly hands and arms gets very itchy! So, went to the gym today and as I got into exercising started feeling hot and prickly. At home, I can generally manage, so have a regime of going to bed with bed socks on as I am always freezing at first and then pulling them off when I get boiling later. However, I have more trouble knowing what to wear when I go out, specially to work. My feet only feel warm now with boots and I am already using thick coats and jackets. At the office, I am soon hot and itchy. I am also worried that, if I feel as cold as I do now, when Winter has not fully set in, how am I going to get through a deep freeze?! I expect I will have to adopt a layering strategy but would find comfort in knowing if anyone else is experiencing similar issues?