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massiel's avatar
massiel
Member
11 years ago

I'm awake now...again

I think it's my 37th day on Tamoifen and it seems that no matter how early or late I go to bed, I'm wake at 3 am. I tried the deep belly breathing, I tried the relaxation technique from the Encore program. I take this pill each day at 6pm. I'm struggling to get my life in sync with normality. Hot flushes, mood swings, nausea. I'm feeling like s different person each day. Funny I used to be a cold frog once, now I'm boiling hot. Today I went to the LGFB program, it really was worth going. I felt divine. Social connection and a chance to on next with other women. Though I've been so scared to do so. I just feel so sad at time seen so many other people going thought this. The frustrating part is I was so busy having a great time I I not notice the lymphedem building in my arm and I did not know that it would ache so much. Now at 4am trying to find sensible solutions. I'm so tired and yet awake. I went swimming this afternoon after the fatigue stupor and it was freezing! I did 45 mins of water exercises from the Encore program. My arm feels so tender, swollen and it's the first time this has happened since urgency in July 2014. So I'm battled as to what is going on. My poor husband how on earth does he cope? I'm so worried I'm ruining his life with my insomniac madness. I'm so frustrated. I do feel grateful to vent. I've not used this resource much until now. Perhaps that okay too. On the plus side. My asthma is under control. You've no idea how amazing that is. It is why I'm struggling to take anything for pain right now. I don't want to mess with my asthma. The nausea though is aweful. Time to go. Over and out.
  • Peartree's avatar
    Peartree
    Member
    11 years ago
    Hi! I'm sorry to hear you're having a tough time. I often lay in bed thinking that I wasn't alone: there are so many of us going through this! I am now 2 yrs down the track of Zoladex/ tamoxifen so can't tell for sure which is responsible for what side effects (and of course we are all different in how we respond). I did struggle terribly with nausea but it had a pattern. Each afternoon at 3pm: I'd have to go lie in the work basement change rooms and turn green. I did finally get on top of it though after 6 months. The things that helped me were exercise (which is often the last thing we feel like), icy cold water (like one of the other posters), and ginger. My oncologist was useful in explaining 'nausea centres': and working out which one was being activated- basically I worked out in me it was the hot/cold flushing and now I go for a walk or climb stairs just before its onset. This may not help you at all, but something about the activity helped me, but non of the anti-nauseas did. I also noted I developed arthralgia after a switch in brand of tamoxifen: there is a Nhs study which found several brands caused significant arthralgia. I switched back to genox (which has the least fillers) and was fine but my fingers and feet are I think being affected my Zoladex now so I don't think its the tamoxifen. Hope that post wasn't too long and is helpful to others. I'd hang in there and keep notes as you try different things, getting through the first few years is so important. Best wishes P
  • Christiania's avatar
    Christiania
    Member
    11 years ago
    Hi all I agree with all your comments, I too struggled with hot sweats, sleepless nights and mood swings. I was so depressed with it all. However 12 months down the track with good GP and Oncologist support I've stuck with it and it's fine. The hot sweats have reduced or maybe Ive just adapted to them but I really feel that the tamoxifen is no big deal now. Can't believe I'm saying that but it's true so hang in there it can improve. Hugs Chris
  • Jackie50's avatar
    Jackie50
    Member
    11 years ago

    Hi Massiel

    You are doing so well. I have been on tamoxifen for 15mths & have nearly 9 years to go. Insomnia is one side effect I had...but I can recommend taking the medication in the morning with breaky & what a difference it made. I also had a ceiling fan put in my bedroom & made the world of difference with hot fluflusheds at night. Yes  drinking lots of cold water also helps immensely. ...I always carry a bottle of water with me everywhere I go. Exercising daily. ..even just a big walk assists in lifting the mood -those endorphins sure kick in. 

    Be patient life will return to a more normal.  Im back working full time & loving life after 7 mths off for intensive chemo & radio while returning to work. That was a challenge....but I got through & the bills still had to be paid.

    Stick with it I just had my results from my mammogram & ultrasound today & am ecstatic as all scans were clear...for me thanks to tamoxifen. ..im ecstatic! 

  • Jay_marue's avatar
    Jay_marue
    Member
    11 years ago

    I have been on Tamoxifen for about 5 weeks. I have had hot flushes which are quite manageable. However, the last few days I have been hit with really low, heavy moods. I wonder if this is a side effect of Tamoxifen or just still in the shock phase after my diagnosis 10 weeks ago??? Annoyingly I also have thrush. I so wish I could just ditch this drug but I know it is a necessary part of my treatment. 

  • Robyn_W's avatar
    Robyn_W
    Member
    11 years ago
    I have to say that I didn't work it out,I think it just happens without you realising.Looking back now,I can remember after chemo having aching knees,bad nails,aches and pains that came and went,and always tired.I used to get very sick of myself,and wonder how long it would go on for.Somewhere,in the middle of this,things just improved without me ACTUALLY realising it.I feel sure that this will happen for you too.Be patient:):) xoxRobyn
  • massiel's avatar
    massiel
    Member
    11 years ago
    Hi Rosanna, thankyou for your post today. I appreciate you sharing. Especially about learning about meds. As it is I'm managing other health issues for which I take long term medications (asthma, apnea), and I'm very allergic to paracetamol. So I'm quite limited with pain management. Aspirin messes with asthma. Aghhh! Oh the mood swings surprise me. I'm not a moody person. So I'm stunned at feeling so teary watching the news, or disinterested with commercials, or impatient. I'm normally so different. After reading your post and Robyn's suggestions, I'm going to try watching comedy when I'm up late again. To aim to stay in a good mood. But I must confess a good cry in the wee hours this morning did help clean the cobwebs of the soul. You girls made my day. Cheers Massiel
  • massiel's avatar
    massiel
    Member
    11 years ago
    Dear Robyn, Can I say thankyou because reading your comments, especially about keeping up the regular movement helped. I now realise this will get better. Thank goodness I'm doing the Encore Program. I'll have to get one of those pillows for sure! I'm sitting under the air conditioner right now. It's been a weird day feeling so worn out, but I'm now accepting that I'm not alone. I'm so glad I vented here. I think I've been surprisingly impatient, I'm still affected by radiation heat and itch. I'm somewhat expecting it will all just go away. The fatigue catches me off guard as does the insomnia. I've had good days, so I better share those soon so that I can give a balance perspective. How did you work it out? As in pace yourself? I'm normally such an upbeat person full of enthusiasm I'm lost for words at times when I hit that zombie state where I just can't think. One thing I've learned to do is keep veggies hopped in the fridge for those moments where I'm going to cook healthy but might run out of steam. Will definitely stay in touch. Thankyou :-) cheers Massiel
  • Rosanna's avatar
    Rosanna
    Member
    11 years ago

    Massie...I was struggling to start with the Tamoxifen back in Oct 2014.  I thought, it stick to me for 5 years....I was struggle with long term side effect.  

    I had the same as you had, insomnia, fatique, bone pain (with herceptin as well), hot flush... more important - mood swing.

    I changed different brand to see if the effect are the same, I took the pill in different time of a day to see if my sleep could improve, I hold an ice bag to sleep with me to ease the hotness.  I didn't experienced with hot flush until starting the tamoxifen.  The Onco gave me a prescirbe to work with the hot flush, but I hassle on it, I hate medicine and chemical (even panadol).    It's embassarred sweat in a sudden, and my forehead with short hair, dripping with sweat.  I had customer came into me, and I went into panic and sweat again. :(

    It seems I can't do too much at all, in terms of work and housework.  I sweat now even in an air-conditioned room.

    Well like Robyn, I still new to the medicine,  I hope it'll settle down little by little later on.

    Take care

    Rosanna

  • Robyn_W's avatar
    Robyn_W
    Member
    11 years ago
    I agree with you,in that Tamoxifen can cause you to wake periodically in the night.Before BC I was a very sound sleeper,and now,after 12 months on Tamoxifen,I wake at 1am and 4 am.I have no idea why it is so regular.The only good thing now is,that I go pretty much straight back to sleep,whereas in the early days I would lay awake for long periods.I don't have lymphodema,so I can't comment on that,but I can tell you that the hot flushes and mood swings,definitely do improve.I also has nausea to begin with,but it went after the first month or so.My hot flushes took about 8 months to really reduce to the point where they are now,and I only have maybe 4 or 5 a day.I still say that exercise is the best thing for them.I also keep a jug of iced water in the fridge,and sip it all day long.It helps to keep your core temp down.I bought a chillow pillow,and this has helped ENORMOUSLY!!!I go to the pool almost every morning and do walking amd running in the water.No hot flushes while I am in the water,and more calories burnt in the pool than on land!!!!!I would go to your GP and ask for something for the nausea.Stay in touch.xoxRobyn