Breast Cancer Now Forum

For the first time in years when I picked up my prescription a couple of weeks ago the brand had changed within days I was stiff as a board. By coincidence I rang a friend today who lives in a different part of the country, also on Letrozole and also uses Lloyds chemist. She reported similar problems from the change to Dr Reddy brand. I've been OK on Sandoz and then Accord but Dr Reddy seems not to suit. I can barely get upstairs. I am going to call at the chemist to report and also to ask the doctors if they can help. Anyone had (extra) problems with this brand? ... View more

Hi Emma I can echo what others have said. It wasn't as bad as I imagined it was going to be. I slept on my back part propped up and with a pillow under my arm, that helped. The worse bit was when the nerves started knitting together and I got sudden darting pains -about 10 days after the op I think but it's good to know things are healing up even if the sudden pain makes you jump.   We all know how you feel, Good luck for your op and  best wishes   ... View more

Hi Kristina   Perhaps you might like to speak to a rheumatologist. There is a drug (hydroxychloroquine) that I understand has been given to women, by rheumatologists, to relieve the problems experienced on Letrozole.   Obviously no one likes taking extra drugs but if it is deemed suitable for you then at least it gives you another option in your treatment and you can then discuss these options with your team.   I'm sure your GP will understand and refer you for a consulation about your joint pains so I would ask to see my GP if I were you and take it from there.   Best wishes         ... View more

My mx was a few years ago but I recall the nasty stabbing pains - made me shout out- which I believe are when the nerves are knitting back together .   I think I took pain killers for three weeks and night time was difficult but putting a pillow under the arm helped so I might have gone on a bit longer than that with painkillers at night, it's hard to remember. I did the excercises religiously and taking pain killers about half an hour beforehand really helped. It was ages before I felt fit to drive though   It's rotten waiting to feel better but it will come. Best wishes. ... View more

Hi, you might need to use a soap substitute and a different moisturiser. It would be best to see your GP because what you're describing could  be eczema. I listened to a radio program once about dry skin/eczema where the doctor being interviewed said that most people underestimate how much moisturiser they need to contol their condition. Have you tried aqueous cream? It's cheap and effective for many people.   By the way,the E45 cream I tired once contained lanolin and I reacted badly to it   Best wishes. ... View more

One thing that you probably already know is that oestrogen has an affect on asthma -this is why some females asthma improves after puberty and worsens after menopause so hormone treatment might have worsened your asthma , possibly leaving you open to infections. This is something to discuss with your team and GP. I agree with what others have said about the calcifications and that your team seem to be doing their best for you.    If it's of any help I can tell you that once you have had breast cancer then that will be considered alongside everything else you might seek help with. It is a bit scary but it is far better that it is taken into consideration than not.   Best wishes, I hope you soon start to feel better after this nasty episode. ... View more

Do you have osteoporosis? Letrozole is sometimes prescribed to women withe stablished osteoporosis along with a bishosphonate and calcium supplements to limit/halt fuirther bone damage but I imagine you are already on these treatments for your bones if you have osteoporosis.   Anyway, another avenue for discussion with your team.     ... View more

I found aqueous cream from the pharmacy useful and cheap to use while massaging.       ... View more

Hi Amelia   I also had no recon.I didn't have radiotherapy so can't comment on that aspect but it did take me about two years to get to a point where I wasn't aware of the changes to my muscles etc almost all the time. I do not remember any particular soreness but there was so much else that felt really odd.It was very tight for all that time. You say you do stretches - are you still doing the prescribed post op exercises and fitness routines? I found those very useful and still do them.The tightness comes back if I don't. Perhaps your BCN might be able to shed some light on it and if others have reported the same.   I hope the soreness settles soon. Best wishes     ... View more

Hi DWL   I am one of those who did not have reconstruction and wear a prosthesis on the affected side. I did not have radiation of chemo. It took a while to get my arm and shoulder movement and strength back post mx but I am fine.No problems mentally I just didn't want all the extra surgery and recovery time. I can understand why many women do opt for recon.it just wasn't right for me. Good luck with your surgery if you decide to have it. ... View more

Hi Runningfree   There is no right or wrong decison - just your decision.By now I hope you are feeling more settled about what you want to do. It  isn't always an easy decision to make   Best wishes ... View more

Hi Mrslogic   The waiting is dreadful.   As regards the op it probably won't be as bad as you think. Take in things that button up the front so they are easy to get on if your arm is stiff afterwards. Once you are home take painkillers regularly don't wait to feel pain and then just wean them off as you improve.You might need a pillow between you and your arm in bed. I didn't need an op for lymph nodes so I can't comment other than my team had been able to tell me the ultrasound showed no lymph involvement and that was an 80% accurate indication,   If you are frightened of the anaesthetic it is likely you will be given something to help you when you get to theatre. Anaesthetists are some of the most highly skilled people in any hospital so try and think of that     .       .                     ... View more

Hi MysteryMouse   I didn't have reconstruction because I didn't want all the extra surgery and extra healing time. I too have to watch necklines, bras, and armholes - a small roll of fat at the scar site. I need a camisole bra or my scar shows if I lean forward. I have never regretted my decison.   ... View more

Hi Wavylocks   I buy the minoxididl (private prescription) but because it is prescribed there is no VAT.   What are you on?   It may be that GP's can do vouchers for wigs but I don't think so. The vouchers I've heard about are for £100.   In order for us to make an automatic case for wigs we need the connection between our adjuvant therapy and hairloss to be established and recognised (for chemo it is established of course).Yet one more reason for ladies suffering hairloss on hormone therapy to speak out. Perhaps this website could collate the incidence and severity of hairloss. Images of the types of hairloss (by pattern) could be shown and we could click on the image relating to our pattern of hairloss.If these choices were also made by drug type it would form a useful reference.it would need a requirement to log in to notify hair loss and possible only once to keep the figures true.                                 ... View more

If you use minoxidil, (regaine) and the follicles aren't damaged, it can take four months before any regrowth appears.   Minoxidil is the only thing recommended by my GP or Dermatologist as an 'over the counter' drug but I do get a private prescription for it so I do not pay any VAT on it.   So far, giving me a voucher towards a wig has not been mentioned. I do not think the medics realise how short a time a wig lasts. Mine was about £250 and it got a lot of good comments but within a year the nape of the neck became like wire wool. I think serious wig wearing would cost at least £500 per year. I do not think a GP can issue a wig voucher.   I didn't have chemo but the hair loss since going on Letrozole has upset me far more than losing a breast and knowing that it is both progressive and permanent in my case increases the distress.   I agree that women should be advised prior to treatment that this can happen so that they can try everything possible to keep their hair. I am on a mission to get this message across to anyone who will listen. I hope the ladies on this forum with similar problems will join with me in that.   Good luck. I hope you get a referral and that the dermatologist can help.   Meanwhile, know you are not alone and that you have my heartfelt good wishes.     ... View more

Hi Wavylocks   The reason your hair is getting finer and finer is due to miniaturization of the follicle. Ultimately the follicle ceases to produce hair and cannot be 'woken-up'   Hair loss is very under-reported which is why I am trying to encourage women to do just as you have so that the medics can prepare patients for this possibility.   Try to get referred to a dermatologist and skin biopsy so that an accurate diagnosis can be made.   I understand only too well how you feel. Good luck ... View more

Please ask to be referred to a dermatologist- preferably one specialising in hair. A proper diagnosis may help you to cope better and something might be able to be done to help your hairloss - so many causes of alopecia. Best wishes   ... View more