Breast Cancer Now Forum

Hello Ali JB,  I can identify with some of your symptoms on Exemestane after being on it for 7 months.  My blood pressure also increased to dizzying heights.  I decided to stop taking it for five or six days and then go back on it.  During the holiday from it I noticed that the joint pain disappeared and the blood pressure went back to normal.  My GP suggested blood pressure tablets!   I didn't want another table to counteract the original one.  I have therefore been managing as above.  On Wednesday I had my annual check up with my consultant and a mammogram (this was clear).  The consultant was pleased that I was managing the side effects and the way in which I was doing that, but he was greatly concerned that I'm refusing to take Alendronic acid to help with osteoporosis. He has now suggested that I go onto Tamoxifen, he has given me a month to consider.  Apparently Tamoxifen slows down bone loss in postmenopausal women.    As you can imagine I'm not keen.  Watch this space !!! ... View more

Hello Strongbow24, I'm so sorry that you are going through this.  I had very similar side effects and stopped taking Letrozol the joint pain was terrible. When I told my gp that I had stopped taking it he was horrified and advised I speak with my consultant, he was more understanding and changed my medication to Exemestane, that was five months ago.  No joint pain, hair continues to thin but not as bad as when I was on Letrozol.  I feel more alive and am back to my old self.  The only thing I'm keeping a watchful eye on is my blood pressure, which I had to do on Letrozol anyway. I don't want to take another drug to counteract the one I have to take. Up until I got breast cancer I had not been on any medication and I had reached the age of 74. It might be worth suggesting that your consultant changed you to this drug.  Everyday we are alive is important so try not to give up, there is light at the end of this tunnel.  Stay strong. Hugs xxx ... View more

Hello ladies, I had difficulty with Letrozole, too many side effects to list, so after discussions with GP and consultant I was put on exemestane and the brand is Aromasin, which apparently costs in the region of £80 per pack of 30 tablets.  I have now been on them for 6 months and so far I have not had any issues other than thinning hair and a little weight gain, not much I can do about the hair, but I watch my diet ensuring that I get the nutrients I need for the old bones. I guess that they don't like prescribing the Aromasin brand because of cost, but it might be worth checking if you are not on them. Of course we all react differently to medication, so although this appears to be ok with me, it may not suit others. Milly15 ... View more

Hello Janbabs, I started taking Letrozole in December 2021, after a few brand changes, three months ago I stopped taking them due to the terrible side effects, mainly joint pain that was so bad I was on pain killers and feeling drugged up to the eyeballs, I struggled to get through every day.  My GP was horrified, but after speaking with the BC nurse she agreed that I should stop them and that she would speak with my consultant.  He was very understanding and agreed that a week or two off them would not cause any major harm, however, he then prescribed Exemestane (brand name Aromasin).  I was fine for a couple of weeks then had joint pain, started taking them every other day, pain went away, I'm now back on them everyday, and touch wood I have been fine for the last two months.  However, hair loss on head, eyebrows and eye lashes is horrid, coupled with extra hair on my chin and upper lip.  These I can and will cope with, I feel it's a small price to pay to keep cancer at bay. I do hope that you are able to get a drug that suits your body, we are all different.  ... View more

Hello Whiskey, so sorry to hear that you have had to join us, but its good that you have found this site, welcome. There are lots of different topics so investigate them when you have time. Telling people is almost as bad as hearing the news from the medics, but its easier once you have told them. I told a gay male friend that I had found a lump, and then went to my first consultation alone. Then I told my two closest friends.  That was it until after it was all over and that I'd had a couple of extra hospital stays. Then I told my family. I found it easier to tell those three close friends as they were less emotional than family were. I couldn't deal with emotion, I needed to get my own head round it first. After I had told my family I started telling others on an individual basis.  I guess you will find a way, but you don't have to tell everyone at once. When you feel comfortable about talking about it, you will know when the time is right. Don't rush into anything, you have enough to cope with, but you may feel better sharing it with at least one or two friends. I still have friends who I havent told because I dont see them that often. Those I have told, even my close friends, don't want to talk about it, however, I have got used to it now. If I mention it th ey refer to it as the big C which I hate, it's cancer, but I dont correct them, I guess its their way if coping with it. Try not to feel alone in this, you will be assigned a breast cancer nurse and once your treatment starts you will meet up with others going through this. Sending you love and hugs.  Hang in there, you are strong and you can fight this, think positive thoughts. ❤️ ... View more

Hello CiderQueen, I know what you mean about being left on your own.  It feels that at the time of diagnosis and treatment everything is buzzing and you don't really have time to focus on what is happening, and then suddenly all the treatment is either plodding along or has finished.  Friends and family are shocked and don't quite know what to say and then they feel ok to let you get on with it and carry on as if everything is normal. The thing is that nothing is normal to us anymore.  Every pain, lump or bump and our minds go into overdrive.  I have found walking (in all weathers), keeping busy in the house and garden and sometimes just window shopping, anything to keep my mind from overthinking. I have given up talking about it to family. I have recently done some fund raising for Breast Cancer Pink Ladies Tractor Run in Norfolk UK; a cake stall and boot fair, this has kept me more than busy, and I have met a number of women who have had or have breast cancer.  Not that they have become best buddies, but at least I had people to talk with who had the same experience which helped both me and them.  A couple of them said that they were similar to us, where they had no one to talk to.   I don't think there is an answer to our situation, except try to get out and about, which is easier in the summer months, the winter will be a different story, so keep in touch via here, share any tips you may have in managing this uncomfortable situation we find ourselves in. Stay strong, sending you big hugs Milly15 ... View more

In consultation with my GP and BCN I'm having a two week holiday from Letrozole after taking it for six months with no side effects.  The pain in my joints became unbearable and my blood pressure had shot up, at this stage I don't know if the blood pressure increase is because of Letrozole.  It appears that it could be, so I'm monitoring my blood pressure twice daily and reporting back to my GP and BCN in two weeks. Having stopped taking it for two days now the joint pain is less and I feel much better in myself, ie., no brain fog and more get up and go. I guess my consultant will suggest another estrogen inhibitor shortly and I shall obviously give it a try.  Watch this space. Milly15 ... View more

Good afternoon ladies, I have read this forum with great interest.  I have been on Letrozole for six months, and I was able to find one that suited me with no side effects (well thinning of the hair and bones aside).  During the last week I have severe joint pain in my knees and wrists, it is so bad I struggle to walk up stairs and opening bottles and jars is more than a challenge. I'm thinking of stopping taking them.  I have a GP appointment on 16th June so I will see what he has to say.  My quality of life has suddenly become difficult, I'm a very active and busy person, I walk over five miles every day, I do my own housework and gardening; I'm just not the average older person.  To have to stop what I'm doing because the pain is so debilitating and dare I say - depressing is just not what I envisaged.  I cannot imagine being on these for the next five years. Sorry to winge and moan, but I just had to get it off my chest. Milly15 xxx ... View more

mun4o, Although I said that I had problems with Accord, it doesn't mean that others will.  I really don't think that we should be focusing on the cost of these tablets but more about what suits you.  I only listed the ones that I had been given and the effects of them on me.  If you find one that suits you try to obtain that one every time, your GP will be able to specify it on future prescriptions. I hope this helps.  Good luck M ... View more

Hello Debc33, my goodness to have the surgery was bad enough but to go through reconstruction at the same time is brave, well done you. Not everyone gets pain from taking Letrozole, there are a number of brands, it's just finding the one that suits you.  When you feel well enough, talk it through with either your BCN or your GP.  Sometimes when we have been through trauma we just want to get over that before we can move on.  You will know when you are up for these discussions, just take one day at a time. Sending you hugs and best wishes for a speeding recovery.  You are amazing remember that. m ... View more

Hello mun4o, fortunately I didn't get any joint pain or  osteoarthritis post menopause, so I was aware that it could only have been the Letrozole and it stopped when I stopped taking the Accord brand. I so hope you get it sorted soon, if you didn't get joint pain before taking Letrozole, it appears that it might be that which is causing your pains; but get it checked with your GP.   We have all been through enough, we certainly don't need anything to cause us pain or stress.   On a positive note, we have come so far and are moving in the right direction.  We have this forum which has been invaluable for me, there are so many nice people who share their issues and it has been a great help. I'm holding a cake stall this Saturday to raise money for Breast Cancer Research, it has taken my mind off my issues for a while.  I have also been doing some gardening and lots of walking as I don't want to take yet another pill which is supposed to help with the loss of bone density.   Keep us informed on how you get on with the tablets and what your GP says about you joint pain. Big hugs, hang in there, we ladies are a tough breed. M ... View more

Hello Evie-S, thank you. The Pink Ladies Tractor Run is being held on 3rd July here in South Norfolk.  Due to Covid it wasn't held for a couple of years. Women borrow a tractor (if they don't own one), decorate it and themselves in pink, and raise money for beast cancer research.  I'm busy sorting out anything pink around the house.  This Saturday I'm having a cake stall in our town to help the fundraising. If you Google Pink Ladies Tractor Run, you should be able to find it, there a loads of pictures from previous years. I shall report back on here so that you can see how much we raise. Bug hugs, Millie15 ... View more

Hello Mun4o, I'm sorry to hear what you are going through.  We all react differently to drugs, so what suits one may not suit another.  However, these are my experiences of letrozole There are two I'm fine with - Sun Pharma and Glenmark.  Cipla are OK, but I did get a bit of pain in my wrists, however, I was only on them for a month as the pharmacy was able to get Sun Pharma.  The one that really caused me agony was Accord. I had to stop taking them after just two weeks due to unbearable wrist and knee pain and swollen fingers so bad that I couldn't bend my fingers.  Within a day of stopping them everything started to get back to normal.  If you find one that suits you, ask your GP to note it on your prescription, if the pharmacy cannot get it, change to a different pharmacy. We don't have to put up with what we are given, we are on these for years, so we have to get it right. We have no choice about getting cancer, but we do have a choice when it comes to treatment.  I hope that helps.  Keep updating on here so we know how it goes. You are not alone in this.  Big hugs Milly15     ... View more

Hello Evie-S, thank you for your helpful comments and the link to the Dr. Peter Harvey document, it's very enlightening and makes so much sense.  Somehow it puts it all into perspective and helps refocus on the future whatever that may be. For some reason I don't have a dedicated BCN which hasn't helped, but my GP practice has been helpful and understanding, however, I so hate to bother them, perhaps now I will be able to move forward and stop worrying about the 'what ifs'.  I'm taking part in the Pink Ladies Tractor Run here in Norfolk in July so I am busy raising funds for Breast Cancer research, nothing like doing something for the future to help find a cure for this terrible disease to focus the mind.  I'm also making decorations for my tractor, being a bit silly also helps. Just having someone to share these things with has been enormously helpful, so thank you for your support.  I do appreciate it. Big hugs, Milly15 ... View more

Hello Curly Sue, there is somewhere on this forum a post that you may find helpful   - Are you on Letrozole.  A number of us have responded, both good and bad experiences. I hope that you find it helpful. Milly 15          ... View more

Hello Evie-S, thank you for your response.  There are times when I just need to talk through how I feel about losing one of my breasts and the impact that it has had on me mentally.  Don't get me wrong I know it has saved my life and it was my choice to have the breast removed as I didn't want to keep going through operations for lumpectomies.  Apparently it was the right choice as there were other cells that were changing into cancer. Living alone is fine, but friends don't like to talk about cancer full stop, and change the subject whenever I talk about it, it's like there has been a death and people don't know what to say.  Some people say 'the big C is awful' and then go on to talk about something totally different.   It's real and it has happened and it was/is Cancer not the big C I now don't try to discuss it.  For instance the arm where the lymph nodes have been removed is numb, and I wonder if I will ever get the feeling back.  To have someone to talk with about how I'm feeling physically would help at times. Just writing all this down has helped enormously.  Perhaps I should start a diary.  Thank you again for taking the time to respond. Milly 15 ... View more