I was diagnosed last September and had surgery the week before my birthday in October. Radiotherapy the week of Christmas and put on Letrozole. I have found that the side effects have progressively got worse. Stiffness of joints especially my hands and feet. Hot flushes continually through out the day and sleep deprivation at night. My mood levels are low and I find it very hard to tell my family about how I feel. I’ve got a telephone appointment with BCD in 2 weeks and just feel at my wits end. Trying to get an appointment with the GP has been impossible. I’ve managed to get physio booked in for problems with my neck and shoulder (left side)Most people I’ve spoken to who have gone through BC have said the same thing….try and change your tablets or come off them.Prior to my diagnosis I went to the gym 4-5 times a week and did lots of walking. Now I have days when I’m exhausted and have trouble climbing the stairs and have gained 8kg since my op I just need some positive news soon please
Hello I gave Letrozole a solid try but at 7 months I had had enough. My oncologist switched me to an anastrozole and side effects are much more tolerable. Phew. Some people just sail through o Letrozole while others have issues. Quality of life is important.
I also take loratadine ( Claritin). It helps block pain receptors. I cannot take any anti inflammatory medication due to an allergy. See if you can switch to a different aromatase inhibitor if you feel your quality of life is being affected.
I’m trying every other day. Helps. Not recommended but I figured better than stopping so I don’t know about the dosing aspect. Also due for a scan tomorrow due to something noticed on MRI. That’s not due to my dosing which is only recent but I might have to go back to every day if the scan proves positive.
Oh gosh , I am with you. I have been on lestrozole and verzenio for almost a year now. But afraid of cancer comming back. So I push through, some side effects may settle down. I had to back to back cancers a year apart and just look a picture compared to today and almost cried I look like I aged 20 years in two years. But still many good days . I have learned so much through this journey and very grateful for each day. ,Hang in there.!
I second that exercise makes a huge difference to symptoms. They will ask you to stick with it for a bit longer, but if not tolerable try asking the question of switching to Exemestane instead
How long are you doing the every other day on Letrezole I’m just got my prescription to start My oncologist did say I can start every other day but nervous about starting them as I already suffer with joint pains
I’ve been on Letrozole for about 4 years now, and the fatigue is increasing. I work from home thank goodness, but log in super early and log off late most days to allow a quick nap each day. Taking no doze every 3-4 hours in the meantime, and sleep almost 18 hours every Saturday or Sunday to feel human for the next week of work.
I haven’t started, as like you I get some pains in muscles and finger joints. I keep looking for alternative things that may suit me better. I generally have a dislike of drugs and can’t get my head around taking it. Still have it and may try but if do it will be every other day so that my body can get used to it gradually. It will have more chance of settling down but that’s just how I feel and others may not have any problems with drugs. overreact to drugs, so generally take a wide birth around them. I am told mostly people do well on the drug. I have been using something that may help the joints and muscles and so far it has been quite good. have a link below. Although I think safer to use the GEL as its external and Silicum is part of creating Collagen and that can be a problem in cancer so best to use externally at first and check it out for yourself. It may support you whilst on the drugs. My body overreacts to drugs, so I am being careful. There is a link below to the SILICIUM available silica product.
SILICIUM info https://silicium.com/en/products/silicon-g7-original this is the one without preservative and the do another one without preservatives. Also a gel which is mostly likely the one to use as can put directly on joints and muscles.
I started to really struggle with fatigue on Letrazole after about a year, which was really affecting my quality of life. I talked to the breast care nurse about it and was switched to Exemestane which has been better, although I still don’t have the energy levels I had 2 years ago before all this started.
I did some research and found a paper which suggested ginseng helps with cancer related fatigue so I now take ginseng every morning at the same time as my Exemestane and a multi vitamin at lunchtime.. My energy levels feel more stable since I’ve been doing this. Hope this is helpful
@marriott I’m almost exactly a year ahead of you, my diagnosis was in September 24. I struggled with Letrazole, mainly fatigue, but also some joint stiffness, tendon problems and vaginal symptoms. I spoke to my breast care nurse and was switched to Exemestane which has made a big difference, although my energy levels are still a bit up and down and nowhere near where they were before all this started.
I was fit and healthy too before diagnosis and I’ve found accepting the fact that I’m not that same fit person any more one of the hardest things. I’m getting there but still have my moments. Everyone’s experience is different but I have found that the side effects have reduced over time, either that or I’ve got better at coping with them. Either way I’m in a better place than I was 6 months ago, so hang in there and chat to your breast care team about changing drugs if you’re struggling.
Thank you all for your words of wisdom. I’ve seen my physio who has given me gentle exercises for my neck pain but am still awaiting my telephone appointment with my breast nurse. that I can change medication or be given something to help with the joint pain and stiffness
This is my first time posting. I am 77, was diagnosed last summer with HR + HER2 -mucinous breast cancer. The mucinous type is rare and supposedly associated with low risk. I had a lumpectomy followed by full breast proton radiation therapy. I started with letrozole and was able to tolerate 6 months of excruciating pain (joint, bone and muscle), moderate hot flashes, depression. I have fibromyalgia and Crohn’s disease and everything just became worse than it had been previously (as expected). I did a 3 week wash out where I took nothing, then started anastrozole. Within a week, I had brain fog, depression, memory loss, and a complete inability to be organized. I stopped that one. Just started exemestane this week….we’ll see. I have to say that these treatments while effective in reducing recurrence are quality of life-ruining. It’s time they found some other approach, one that takes a woman’s hormone profile and metabolism into account. Thank you for reading and I wish all of you a positive outcome and maximum life quality!
Being triple positive, stage 2a, I too have decided not to proceed with an AI or Tamoxofin. The quality of life on the estrogen (androgen inhibitor) drugs was not conducive to my body.
The Magnesium, Glucosamine, Colagen and high dose vitamin D have been my routine since finishing chemo and radiation. Being healthy, feeling good enough to exercise/work along with positive mental health is my choice.
The Anastrozole, Letrozole and Tamoxofin I tried all did the same to me; extreme joint pain, severe depression which led to inability to work as an artist. Estrogen in our body keeps us younger feeling and has so many protecting benefits to our organs and brain. I am hopeful for a new drug in the US waiting to be FDA approval called Giredestrant. My oncologist says it will be a game changer as the endocrine therapy treatment. The difference with the drug is it’s a SERD, Selective Estrogen Receptor Disruptor, research is showing it to be 30% more effective in lowering recurrence than traditional AI’s or Tamoxofin. Rate of patient discontinuation is much lower due to manageable side effects.
I know everyone’s body chemistry/metabolism is different and following medical advice is our best first line of defense, but doing research and understanding what is going on in our own body is crucial to fighting cancer on a personal level.
My best to all the BC sisters, stay strong and as positive as you can on your journey, you are a powerful female creature.
I haven’t read all 56 posts, so apologies if someone else already mentioned this.
Make a note of the exact brand of these tablets you get. I found the side effects varied depending on which one I was given.
The Sun brand of Letrozole was worst for me, but Accord was a bit better. I still had debilitating hot flushes but not quite as bad as they were with Sun.
I had all the joint pains for the first six months or so, but then they went away. The hot flushes never did go away though.
I’m now on Tamoxifen and luckily have been given the same brand every time. Still getting the debilitating hot flushes but suspect they’re actually being caused by Zoladex.
Hi so I’ve now been taken off my medication for nearly 3 weeks and can say I’m feeling so much better. No more bloating, no more swelling fingers and my hot flushes are a lot less. I’ve now been prescribed Anastrozole so fingers crossed
Im the same as you, I don’t want to start it. Im going on holiday for a week so not starting til after then anyway but im not looking forward to this part of the journey at all. I didn’t know you could take it every other day, i was just told take one a day and that’s about it. Good luck with it, fingers crossed for you
I’m taking Letrazole every day now after doing every other day for 2 weeks in May I’m feeling pretty good still get joint pains but I had that before taking the medication Hot flushes I can cope with but whether that’s the tablet or the blessed hot weather and it’s so hot today I live in Kent and have had no rain for 2 months
Not that I can tell . I think just time made some effects quiet down a little . I take 50mg twice a day the losest dose . that is all I could tolerate. studies say dose does not matter. so I just don’t understand why that is not always given.
that I can change medication or be given something to help with the joint pain and stiffness
