I had a mastectomy and lymphnodes removal in June last year. I had chemo and RADs. all treatment finished in December. I am now on Letrozole.
I easily get tired also after walking my feet ache until I rest them.
I also am still getting aches in the chest area mainly when I have been over doing it.
Does anyone else get aches and pains and how long does it go on for?
I finished the same treatment in Jan2013 and a year on I still have joint pain and stiffness. I think it is the letrozole but it’s a necessary part of out treatment. I was really fatigued for months afterwards and felt depressed about not getting back to normal but that fatigue lifted over the last couple of months. Be kind to yourself Melina because we aren’t all able to bounce back like we imagine.
I have just joined the group as I wanted to find out if anyone else was feeling as exhausted as I am after taking leprozole for about 3 months,I was also wondering how long it goes on for?cate
I have been taking Letrazole for eight months and I still get aches and pains most days. They do wax and wane, some days being much worse than others. I find that I get exhausted sooner , more quickly and after less exertion than before and take much longer to recover. I am not yet back to work but when I do return it will have to be part time. I find it difficult as I look normal and don’t want people to think I’m faking it but also find myself needing to explain it to people, hoping they will believe me. Research is going on looking at the benefit of taking aromatase inhibitors for 10 years, they are trialling this I think. I wouldn’t be surprised if this does happen at some point.however, I would far rather have the aches and pains and have my risk of recurrence reduced than not take it.
All in all I find the best plan is too try to pace myself. I have a close friend who has chronic fatigue syndrome and have learned a lot about managing my own tiredness, aches and pains from her.
I was on Letrozole from dx in Nov 2012 to starting chemo in May 2013- just under 6 months. I had aches and pains but then I do have osteoarthritis which has similar symptoms. I take NSAIDS and paracetamol intermittently to control the pain anyway. The Letrozole tablets did not do their job and I had to have chemo, mx and RT with a good result. They put me on Anastrozole in January after my RT was over.
So far I am amazed by how much more energy I have than I had on Letrozole. I can cope without daily naps, although weekly ones are very welcome! Also, looking at photos of me taken last year, I see that not only did I have a steady dripping of hair loss (not the dramatic sort I had with Chemo) but the remaining hair was really dry and frizzy. Can’t comment on Anastrozole’s effect on my hair as after chemo my hair was different - as so often happens - and I can’t tell!
The lesson I am learning is that while I do still have to pace myself- one should after chemo!- there is a pleasant contrast here with Letrozole in terms of overall condition and energy. Also it is, I believe, worth asking the GP to alter the manufacturer as apparently SE’s vary from maker to maker.
After surgery (WLE and SLN removal) and 15 radiotherapy sessions I’m now taking Letrozole, on my fifth week.
I already have Chronic Fatigue Syndrome, ME, Post Viral Fatigue Syndrome…(pick a title! the medical profession don’t seem to differentiate) so all you ladies feeling fatigue have my sympathy and welcome to my world. I tried 14weeks on Anastrazole, it was awful and made a lot of my CFS symptoms worse; mainly joint & back pain, fybromyalgia and Carpal Tunnel Syndrome symptoms in both hands which woke me at night, not to mention the hot sweats. I’ve been through one menopause two is overdoing it.
When I contacted my BCN she told me that “We thought this might happen”.
I went back to the hospital & saw yet another doctor (I haven’t seen the same one twice) he seemed rather sceptical and said that “we can try you on Letrozole but if that fails then there’s only Tamoxifen left”. Is this true? Are there no other options? I must do some research.
The Letrozole are making me feel even more fatigued and now I feel dizzy and nauseous as well. Mentally I’m not so sharp either. On a positive note the carpal tunnel symptoms have lessened and joint pain is less.
I have an appointment to see how I’m doing in a week or so.
At this rate I won’t last five months on these things never mind five years. Quality of life is important; I don’t wish to spend five years on the sofa!
It is good to read all your replies and know I am not alone.I am seven months into taking Letrozole now. The fatigue is not as bad as it was. I find I feel worse when the sun isn’t shining and the weather is bad so now it is getting better I hope to feel better. I still get tired easily when doing things but have learnt to pace myself.
My main concern at the moment is aching knees and my feet hurt when I walk. I am trying to find comfortable shoes that I can wear and that will help me.
I hope you are all picking up now and are managing to combat your aches and fatigue.
xxx
Glad to read these comments. Have been taking Anastrozol for 4 months now and have noticed I often ache all over and this makes me walk like a doddery old person. Just noticed shooting pains down my arms if I lift them above shoulder level. One more recent pain is my thumb joint feeling like it is bruised all the time and affecting my grip. It doesn’t seem to be going away, so thought it is possible side effects of tablets or rheumatism. Also hands and fingers feeling puffy. Now reading this thread I feel less worried and may mention them at my check up or try some of your suggestions on easing them.
As of Easter I have stopped taking the Aromatase Inhibitors. The side effects were so debilitating they were making normal life very difficult.
Letrozole was giving me muscle weakness in my upper arms; so bad that I couldn’t knit more than two rows before having to stop. I love knitting so that was very distressing. I also sing with a big band and found that holding the microphone was becoming more and more difficult. It weighed a ton! Just a couple of the delightful side effects, there were many others even on half a tablet.
Having weighed up the pros & cons with my oncologist I’ve decided that quality of life is more important. So for now I’m trying to get the stuff out of my system. Apparently it can take four to six weeks to get rid of it.
Might try again on half a tablet but I suspect it will be the same story.
The oncologist did sympathise with the dosage problem i.e. why a small eight stone woman gets the same dose as a large twelve stone one. He didn’t think I was crazy to try half a tablet especially as there were still side effects so something must have been happening!
Hello, Melena- I thought I would bob into say I have been on Letrozole for two years, and although the joint pains lessened slightly after the first six months, they were still pretty debilitating, and I was also experiencing the loss of strength in the upper arms that other ladies have talked about.
To add insult to injury, the Letrozole has also caused bone thinning in my left femur, and so I also have to take Alendonic Acid as a weekly dose, to stop this problem progressing. Alendronic Acid also causes joint pains, and I have recently very reluctantly started to take a strong painkiller twice a day called Naproxen. Basically, it has given me back the ability to go about normal things once more- even running up and down the stairs!! Before this, the pain was so bad that it almost crippled me, and some days I was seized up completely.
I was reluctant to take a strong, and potentially addictive, painkiller, but it really was the choice between the devil and the deep blue sea, and it has given me back a normal, pain free life.
You also mentioned fatigue- until recently, I needed an afternoon nap to get through the day, as the exhaustion would just come down and envelope me totally, and it was impossible to fight against when it happened. It has only recently got better, but I still have to pace myself carefully, two years post chemo.
It is very difficult with these nasty SE, but Letrozole is a really effective drug in hopefully keeping us all well. Take care.
Had mastectomy and chemo with herceptin. Finished 12/12. Have had increased tiredness and pain in shoulder, ribs ankles, along with neuropathy. Not on any meds. Some nausea when I try to take meds. Would appreciate any information or suggestions. Seems to get worse as time goes on.
Hi sal343 and welcome to the BCC forums
Our helpliners are on hand with further support for you on 0808 800 6000 so please feel free to call to talk through the issues you are experiencing, lines are open weekdays 9-5 and Saturday 10-2
Take care
Lucy BCC
I had a mastectomy last March and followed this with chemotherapy and radiotherapy as preventative treatment which all finished in November 2013.
Since then I have been taking Letrozole (7 months) - the side effects are very similar to those mentioned in this thread. No tiredness at all, managing to do even more than before diagnosis. However the aching joints are the worse thing together with painful feet from the neuropathy caused by the Taxotere I took from April - June last year.
I have very painful hands when I wake but manage to ease these off by lots of hand and finger stretches then and at other times during the day. My knees are aching more than before and I get pains in my right hip which I never had before.
Great shoes for the painful feet are the strappy sandals by Sketchers - so comfy. Also some trainers by Hotters.
Have not gone the painkiller route as yet, going to see what the next 2 months bring as I have an oncology appt in August.
I am taking vitamin D3, Cod Liver Oil capsules and Glucosamine Sulphate, so hopefully these are helping.
Yoga definitely helps me and generally keeping active too.
Just hoping the body gets used to it and the symptoms subside in time.
Hi all
I would suggest calling our helpliners to talk through the issues discussed here, as with any supplements/therapies it is advisable to seek advice from your oncology team prior to commencing any treatments which have not been prescribed for you
Lines are open weekdays 9-5 and Saturdays 10-2 on 0808 800 6000
Best wishes
Lucy BCC
<Empty imported post>