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So tired

Chrissiep
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I was diagnosed with breast cancer in March last year. I had surgery on the 1st April. The out come was a malignant tumour and several lymph nodes were removed.  Following this I had chemotherapy and radiotherapy. I was just ten days post treatment when I felt very unwell and was rushed into hospital for an emergency appendectomy.  That was end of October.  I was really hoping to begin to have more energy by now, but I don't.  Some days are better than others.  Today I feel like a lump of lead and have no energy.  I'm also suffering from severe headaches. My GP hasn't helped, she has given me various meds and sent me to a physiotherapist. The breast care nurse has sent a fatigue diary for me to fill in this hasn't really helped as there seems to be no pattern to the fatigue. I'm sure that I am not alone in this, has anyone found a way of coping with this kind of tiredness? 

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    Hi Chris

    No you are not alone, tiredness and fatigue will have been experienced by everyone who has cancer. 12 months on from radiotherapy and 16 from major surgery and 3 weeks on from minor surgery, I still get fatigue. Like you say there is no pattern to it, you can get a good day, and the next you can be completely washed out. Some of it could be caused by depression, common in cancer patients, get checked out by your GP for this, it is treatable. Sometimes by not getting enough quality sleep. But often there is no obvious cause. I have been told to just go with it and rest on days when I have no energy. However having been given extra time by my treatment, I dont want to waste my life sleeping and having no quality life.

    There is a drug called modafinil, it increases alertness, students use it at exam time, to stay up late while revising and to keep alert whilst doing their exams. It is very subtle in its effect and is not a powerful stimulant. Doctors can prescribe it for sleep apnoea and for shift workers whose sleep pattern is disturbed however it is not licensed for use in fatigue caused by cancer. There have been proper trials on cancer patients which proved inconclusive in effectiveness. However in a German trial the subjects were offered the chance to continue taking it after the trial had ended, it is telling that most of them took up the offer.

    In consultation with my GP, I asked if there was any health reason I should not take it. For example high blood pressure etc. She told me there was not but advised me not to take it. I bought some from a reputable online pharmacy and took one 100mg tablet each morning at 6:00 am as taking it later would cause disturbed sleep. It broke the cycle of extreme lethargy I experienced during and after radiotherapy. and after 4 weeks I discontinued taking it. The only side effect I had was a headache on the first two days and vivid dreams. I still get good and bad days but I can cope as the fatigue is not so extreme as it was.

    Keep up your fatigue diary for the nurse, they can often spot patterns which we lay people cannot. and keep with your GP while she explores ways to get you on track. If all else fails you may even wish to discuss modafinal with her.  best wishes Kim

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    Hi Chrissie .... I am sorry to hear that you are still feeling so unwell.  Your health should really be improving now and not worsening.

    I really do not want to cause you concern but in your position I would insist that I was sent for a CT or MRI scan, which included my head as I know only too well the symptoms of secondary breast cancer. Tiredness and headaches are symptoms of possible brain disease  (I have it) and this needs to be investigated asap - a diagnosis cannot be made without a scan for something of this nature.  Have you had a recent head scan?

    I truly don't want to worry you but it would be wrong for me not to pass on my experiences. Please let us know how you get on and all the best x

  • Offline in reply to max56

    Hi Max. Thank you for your reply. I have had an MRI scan, this was just before Christmas. Thankfully it came back all clear. I'm seeing my GP next week. It has been suggested that the Anastrozol may be the problem and that a change of cancer drug might be the answer. It's a process of elimination now I think. Thanks again. P.S. I love your little. C.

  • Offline in reply to kimchoson

    Hi Kim. Here here, I don't want to spend my days sleeping either, life's too precious for that. I will mention the medication you talk about to my GP but I doubt it will be met well. Today's good so I'm off with dogs for a walk. Best wishes . C.

  • Offline in reply to Chrissiep

     

    Hi Chrissie - I am so glad that you have had an MRI, it is a difficult subject to mention but I couldnt just let it pass without practical guidance after being diagnosed with secondaries in my brain last year.

    I really hope your GP can get to the route of the tiredness for you.  Maybe it is just that a nap early afternoon would recharge your batteries enough to take the edge off things.  Hopefully it is just a medication change and you will be back to your old self soon.  The best of luck and keep in touch x

  • Offline in reply to Chrissiep

    Hi Chrissie

    Glad your having a better day and taking your dogs out for a walk is a good antidote for every malady. The fresh air and change of scene can wake you up a bit and for some reson energise you. Kim

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    They say it takes a year. And you know what? It does. It was about 18 months before I felt "like the thing." Just learn to take each day as it comes at your own pace. If you waken and feel ready to take on the world - do it. If you feel like just lazing around - do that too. If you feel like sleeping - sleep. Keep company with positive up - beat friends. Eat lots of healthy fruit & veg. A neighbour recommended drinking freshly juiced wheat grass. It provided me with something to do by planting, growing and juicing the grass. You'll find starter kits on the internet. Good luck with your recovery.

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