Paolability - I too think that your "hair" in your photo is totally awesome. The colour really suits you. Had your own hair grown back yet? if so you should get it coloured the same as the wig - fabulous.
Anyway I am so glad I have found this thread. I too am suffering terribly with chills and my onc has no solution!!! When I started tamoxifen I had horrendous hot flushes and chills but then after a month or so these settled right down and I thought great this is going to be ok. Well now that seems to have changed again!! For the past two weeks I have spent every evening frozen to the core! It usually starts around late afternoon. I have to wrap up in a really thick blanket every evening - ridiculous!!!! Also the fuzzy head thing and the last couple of days I have had real difficulty concentrating on anything. I feel as though general everyday life is a challenge!!!! Very frustrating.
I have been back to work for 6 weeks now, not back up to full time hours yet - and thank goodness I say. I find that I get ridiculously tired around 2pm - can barely keep my eyes open. I might purchase some energy drinks to get me through that part of the day. I have also felt extreme tiredness this past week. I am sleeping really well and I think I get enough hours a night but my body seems to disagree!!!! I am trying really hard to shed the chemo weight that I gained by exercising and dieting a little but today I felt to exhausted to get on my exercise bike my body said lay down sleep, so I did. But now I feel annoyed cuz I haven't burnt any more calories!!!! Arrrrgggggg!!!!
Fingers crossed this all settles down cuz I really hate being cold. Brrrrrrrr.
Thanks for amitriptyline recommendation. I've seen it mentioned in these forums. My friend used it for stress-related sleep disturbance (waking up every 90mins)
Because it'd worked for my friend, I asked my GP for it a few months ago. She said it's for sleeping problems earlier in the night, not later. She prescribed 10mg? Diazepam (Valium) to take as needed. I took it about 5 times and didn't notice a difference.
Now that I am getting up to work in an office, I'm not getting the frequent waking + insomnia I had before. I still wake up frequently but I get back to sleep quickly.
However, since yesterday afternoon I've been feeling better. I'm still low on energy but I'm not cotton-headed half-asleep.
It's down to a) restarting Citalopram, b) bitter lemon (for night leg cramps), c) or something else.
(Being an over-organised person anyway) I wonder if it'd be useful to capture how I feel during the day (biorhythms?) to see if there are any patterns. I wonder if there's a phone app for that...
For tiredness see if your doctor will prescribe a low dose of amitriptyline. It's not addictive, won't help you to fall asleep but helps you get back to sleep quickly if you wake up in the night or ridiculously early. I've had sleep problems for years and wouldn't be without it now.
(Not to be recommended while on steroids - had really weird disturbing dreams)
I'm due to start arimidex in a few days and not looking forward to it.
Good luck. Stella
Hi Paola - just to add I had/have all your symptoms and the coldness too and the coldness has gradually receeded in the last month and only comes on sometimes now. My onc had no clues about why or how to treat it , just said it was very usual.
-I still take a siesta almost everyday - but I work from home mainly so its possible and I'm working 3 days only - I also started tamox in august after 2 ops, chemo and rads- how you manage to communte into London I really don't know.
take care of yourself - I am imagining you bundled up against the cold and then frarntically removing clothes when you get a sweat!
Thanks ChoccieMuffin! My profile pic is me in my chemo wig a year ago.
I got that wig for about £16 including shipping from Hong Kong from an eBay seller of cosplay items. Cosplay (costume play) is where (Japanese, Korean, etc) kids dress up as video game characters at conventions.
The wig options I considered: http://pootability.wordpress.com/2010/04/21/found-one-mojo/ (Apr 2010)
The full profile photo: http://www.flickr.com/photos/paolability/4603928213/ (May 2010)
My natural hair colour with a chemo wave: http://www.flickr.com/photos/paolability/5241132744/ (Dec 2010)
I had previously dyed my hair plum but I left it white and thought it looked cool until a 20something woman offered me a seat on a bus after xmas. When I asked why, she said "because of your grey hair".
So I dyed it perm navy (in a panic). Hated it and went to get a proper cut (first time in 10 yrs): http://www.flickr.com/photos/paolability/5375291048/ (Jan 2011)
As it's grown back (VERY slowly), I've covered the white with normal plum then turquoise. I bought green this week. Once the navy ends are cut off, I'll be super cool!
I am using CrazyColor from Renbow (http://www.renbow.co.uk/) and leaving it on for 3hrs.
I met a 40something woman with white hair who'd had chemo 3 years before and her hair stopped growing at about 3". At each haircut this year, I think "this could be the style I spend the rest of my life with". I'm happy with my latest style and so it's all good.
Next on my list is to get a tattoo (flower on my right wrist).
Have any of you made any changes to your appearance because of your cancer experience?
Paola, feeling better
Paolability, love both the username and the avatar, please tell me the picture is you, you look gorgeous!
Citalopram and some other anti-ds are often used at very low doses to help counteract the "can't sleep" SE from Tamoxifen. If you tolerated it in the past then hopefully that will help with current symptoms. If it doesn't do the trick for you there are others that you can try. (can't remember the names, still on chemo).
Don't know if it'll help, but when I have trouble sleeping, either getting to sleep or staying asleep, having the radio on low volume on a talking station can help. The noise of other voices, not so loud that I can actually hear what they're saying, sometimes helps to keep my own thoughts damped down.
Well, I've had a different experience in that both my GP and oncologist have both told me that my sleeping problems are due to the menopause. It's my (lop-sided) coldness that is a mystery to them.
My GP said she wasn't surprised to hear that I was sleeping badly. She said that it's part of the menopause and that Tamoxifen aggravates the symptoms.
She went onto say that women find that the symptoms settle down - I thought "oh good!" - and she coninued, "after 18 months" and I thought "oh crap!"
She said to eat well, get plenty of fresh air and go for walks (they don't have to be energetic). I told her than my lawyer friend whose leukaemia returned read online that lemon juice in the morning helps. She said there was no scientific basis for it and said there's no reason (other than placebo) for it to work. I'm willing to try harmless things (like lemon juice) but I'm a skeptic and don't want to open the door onto superstition.
My oncologist suspects that Tamoxifen is the cause of my coldness but advises me against coming off it to test the theory since there's nothing else I can take instead.
I can totally sympathise with the issue of inability to work. 😞 I appreciate that my next statement might seem outrageous but I had more stress worrying about not being able to pay the rent or buy food last year, than I did about my diagnosis, surgery or treatment.
This year I am contracting and it's an 1.5 hr commute into London. At my current contract I've arranged to start at 9:30am by taking half hour for lunch. However, some days I can't get anything useful done as my mind won't co-operate.
How do you try to boost your your energy?
At 4pm - the sleepiest time - I sometimes indulge in a slice of cake. It doesn't actually make a difference except regret it because I'm on a diet!
Yesterday I decided to restart Citalopram at 5mg (an anti-depressant) after three weeks off, which seems to have coincided with the increase in tiredness. I vaguely remember the oncologist saying last week that Citalopram would have helped me sleep better. We'll see.
Like you and Sarah, my main problem is constant tiredness and inability to think straight. Everything feels an enormous effort.
I also feel the cold much more now, I used to always be someone who walked around in T-shirts in winter - not anymore!
I haven't been able to return to work, I was self-employed prior to my diagnosis and my work involved a lot of travelling, tight deadlines etc - just can't do it. Luckily my husband is incredibly supportive but he's job is at risk so I keep worrying about it all plus the lack of money.
Like you I find it much harder to engage in life. By the evening I feel exhausted which makes socialising hard.
I wish the doctors would be more aware of tamoxifen side effects. I know some of it could be post-treatment fatigue and menopause too so it's hard to know for sure. But I think that's why some women stop taking it. I'd never stop taking it but I'd like the doctors to recognise how it can make us feel. Elinda x
Thanks. Although it's good to know that my collection of symptoms aren't unusual, I'm sorry that other people are having them too.
I found the discussions about Tamoxifen brands. I'd already switched from Generic to Wockhardt. I'll try APS.
I over-heat too but I figure it's just normal for the menopause. I now wear clothes I can take off quickly (cardigans vs. jumpers) and always have a fan handy (a USB fan at my computers, hand-fans in the lounge and in each handbag). I also carry gloves with me because sometimes my body over-heats whilst my hands and feet feel ice cold!
The fatigue reminds me of when I suffered from depression and my world got really small, just overwhelmed with glum thoughts. I'm not depressed any more (things had been looking up) but it seems as if recently all my energy has been spent on staying awake during the day; conversations are challenging and I cannot engage with life as I used to.
How do you manage work-wise, with office hours and a full working day?
Snap! I too started on Tamoxifen in Aug 2010 and was already part way into menopause with night sweats. I'd started on HRT for that but of course had to stop taking it.
If only there was a magic wand for the Tamoxifen SEs I would be waving it madly over all of us taking it! I'm suffering with most of the problems you describe, and like you my No. 1 problem is the tiredness affecting my ability to concentrate. If I could cure that I could put up with the rest. I've been taking Valerian root capsules for the last few weeks and although they're not a magic cure, on average I'm sleeping better, even quite well some nights, and they don't have horrible side effects. Although I'm still waking up 1 to 3 times per night I can usually get back to sleep again.
However, I'm not getting the coldness, I'm getting the opposite problem, I'm now super-sensitive to heat. So if the temperature at work rises a few degrees I'm in trouble and sometimes have to go outside to cool off or even go home because it gets me so distressed.
I was getting the leg cramps but have found that by switching brand of Tamoxifen those have just about disappeared - helped by drinking water before going to bed. I finally realised that the leg cramps coincided with taking Wockhardt brand, seem to be OK on APS. Having checked the list of ingredients there are different additives in the two brands although the active ingredient is the same.
Sweetheart, you're telling my story! Coldness... numbness, cramps, blood tests for thyroid deficiency coming back negative... There are so many side-effects from Tamoxifen but the medical profession doesn't seem to take us seriously.
I'm not sure if there is any answer, but be assured, you are not alone.
I've been on Tamoxifen since the end of Aug 2010. I was starting the menopause anyway - I'd been having night sweats for the previous year - but I happened to start day-time hot flushes a few days before I started Tamoxifen.
I now have a collection of relatively minor but very frustrating problems. In decreasing order of importance:
- can't think straight - constantly sleepy
- cold hands, feet and skin (right hand colder than the left)
- hot flushes
- leg cramps most nights
- waking 2-6 times a night with insomnia
My GP arranged blood tests. My blood sugar, blood count and TSH (to test for a thyroid problem) all came back normal. At my recent 6-monthly review, the oncologist was flumoxed by my cold extremeties.
What I consider the worst problem has changed. First it was the hot flushes. Then, as the weather got warmer, I still felt cold (as I did during chemo).
The past few weeks, I am constantly half asleep and find it very hard to think straight. Sometimes I can't get to the end of a sentence as my mind goes blank. And I'm crying a lot (at songs, films).
I recently came off Citalopram (gradually, with my GP's help), having been on it for over four years. I'm also on Lansoprazole for acid reflux (since it worked great during chemo).
It's very frustrating not knowing what is causing the tiredness and coldness. If I knew there was no treatment or nothing I could do/change to alleviate symptoms, at least I would know to adjust my life accordingly (e.g., switching to a part-time job).
Any tips or suggestions would be greatly appreciated.