Letrozole
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1 posts since
23 Oct 2017
Hi I’m new to this forum. I have had breast cancer twice, 2nd time round was in the same breast. Because of this I decided to go for a double mastectomy to avoid a “3rd” time. First time round I was put into Tamoxifen for 5 years, apart from the common side effect of hot flushes & mega weight gain I felt well on then. However, I’m now on Letrozole, have been taking them for just over 12 months and am experiencing just about every single side effect listed and more. Recently I have been getting excessive sweating, dull like growing pain in my left leg from hip to knee, excessive fatigue and more recently bouts of Vertigo & Tinnitus which are so debilitating I keep having to take time off work. I’m interested to find out if anyone else is experiencing this on Letrozole? I also have aching joints which I can cope with, excessive itchiness all over the body, mainly at nigh but I take antihistamines for that.
With all of this going on it’s making me feel like a complete hypercondriact… is anyone else experiencing all of this and how do you cope?
I look forwards to your comments xx
5184 posts since
15 Jul 2010
Hi Lise,
I have also had two bouts of primary breast cancer in the same breast. I was first diagnosed 7 years ago and had a lumpectomy followed by Tamoxifen. Almost a year to the day, I found a second cancer in the same breast. I had a double mastectomy (1 was just prophylactic), followed by Letrozole.
I have taken Letrozole for 6 years and only finished taking it a few months ago. Like you, I have had all sorts of side-effects. I have Lymphoedema in both arms now. I have nausea, night sweats, severe eye sight problems, weight gain, arthritis pain in all my joints, Diabetes, small fibre neuropathy in both legs, insomnia, intense fatigue, liver fibrosis, kidney problems, lack of concentration, memory loss, chronic constipation, fitting (due to medication), itchiness, tooth decay, dry mouth and a host of other symptoms. I had some of these problems with Tamoxifen too, particularly with the sweating. One of my nurses suggested taking a low dose of Venlafaxine for this. This is a prescribed anti-depressive, but it has reduced the sweating considerably. It might be worth asking your care team about this, if you continue to have problems. Acupuncture can also help.
Can I ask when you were first diagnosed, what type of breast cancer you have, what stage it is at, how soon after your first bout did you fall prey to the second one, is there any history of breast cancer in the family, and what age you are? I am 68 and my Mum had breast cancer for 12 years. It metastasised to liver, lungs, brain and breast in her final year..
Are you scheduled to stay on Letrozole for 10 years or are you due to finish after 5? I was told that although the recommendation is now for 10 years, that, for my type of cancer, it would do no good continuing to take it after 6 years.
Have you discussed some of these side-effects with your care team? They can give advice on how to combat some of these side-effects.
I hope that you can get some relief from these and that you don’t find any more lumps in your breasts.
Please keep in touch and let me know how you get on.
We are always here for you, whenever you feel like talking.
Kind regards,
Jolamine xx
21 posts since
28 Dec 2015
11 posts since
5 Dec 2017
I had breast cancer removed Aug 2013. Started on Letrozole April 2014 for a year but because of aches & pains I got moved onto Anastrozole. At first I thought it was better, but been on it now for over 2 years & I’m crippled with joint pain, shoulders, hips, knees, particularly left leg, foot deformed, bakers cyst behind left knee. I’d asked consultant if I could stop it. He said no & offered Tamoxifen, I said no. 2 weeks ago I went to GP who offered me a break for a month to see if there was improvement. So I’ve stopped taking it. I value quality of life. My bakers cyst has reduced & hot flushes have stopped! I’ve been cold. Haven’t been cold in over 3 years. In 2 years by bone density has gone from above average to osteopenia of the spine. I know someone who has been on it for 6 years without any side effects. It must affect people who are prone to arthritis. My cancer was the most oestrogen positive you could get, but a risk I’m prepared to take rather than suffering. Also had the insomnia & itching, take antihystamines to control it & constipation. But prone to the latter two anyway.
21 posts since
28 Dec 2015
Always remember it is your choice to make. Do some research to back you up, there’s lots on here so that you know more about it the next time you see the doctor. Think carefully about what you want, and the possible risks. Everyone is different. For me the side effects are just too much to bear currently, I’m seeing a shoulder specialist tomorrow because of problems there, and I’ve done my part with physiotherapy , over 6 months, injections and exercise and still I can’t fasten my bra, or sleep at night from the pain. I need to feel some kind of “normal” for a while. Maybe this will only be a break and I will be given something else later, but it will be my choice.
Best wishes and good luck.
1 posts since
3 Nov 2018
21 posts since
28 Dec 2015
Hi,Ali,
it’s now 10 months since I stopped Letrozole and the joint pains in my legs and muscle pains have all but disappeared. I tried Tamoxifen for a short while but that was the same so stopped. It does take a long time for the side effects to disappear.
Re your shoulders, get some physio if you can before it stiffens. I had that too and was told it’s common after radiotherapy, unfortunately mine developed and I had to have a shoulder replacement due to arthritis. Sometimes you think these pains are never going to end but one day you realise how much better you are and you haven’t noticed, I hope this helps.
5184 posts since
15 Jul 2010
Hi Ali,
I have had 2 bouts of breast cancer. The first time I had a lumpectomy followed by Tamoxifen for 1 year. For the second bout, I had a double mastectomy, followed by Letrozole for 6 years. I did not have any radiotherapy or chemotherapy.
I had side-effects with both Tamoxifen and Letrozole. I stopped taking the Letrozole in July 2017, but am still having pain in both arms, legs and back.
Kind regards,
Jolamine xx
5 posts since
21 Jan 2019
5184 posts since
15 Jul 2010
Hi Judy,
Make sure to have a chat with your oncologist or breast care nurse first, before you stop taking the Letrozole.
I hope that your joints settle down, along with all of the other side effects.
Please let us know how you get on. We are always here for you.
Kind regards,
Jolamine xx
5 posts since
21 Jan 2019
I’ve got an appointment with my oncologist tomorrow. But I’ve stopped taking them 3 days ago and already I feel so much better. The aches have reduced tremendously, itching not as bad , last night I slept right through. My quality of day to day has improved so much in days.
144 posts since
16 Nov 2018
Hi Judy
just seen this thread:
I am into my second month of Letrozole with the main SE being insomnia and joint pain. Please let us know what your oncologist says. It is hard work at the moment! Trying to stay positive. I have spoken to my GP who is wonderful and have got meds to help me sleep but I don’t want to take yet another tablet! I previously only took omega 3 fish oils!
Good luck tomorrow.
C x
2 posts since
24 Jan 2019
Hi
I have now been on Palbociclib and Letrozole since March 2018 after developing bone mets in my pelvis a year after being diagnosed with breast cancer. I have discovered that the brand name on Letrozole makes a huge difference to how I feel so it might be worth trying different brands until you find one that suits. For me I seem to be fine on Accord but some of the others have been horrendous. You could ask the nurses which one seems to give the least side affects x
5184 posts since
15 Jul 2010
Hi Judy,
I hope that all goes well with your appointment tomorrow and, that your oncologist can suggest a more suitable treatment for you.
Kind regards,
Jolamine xx
144 posts since
16 Nov 2018
HI Scandia
Hope you are ok. Thanks for replying re Letrozole. I am on the Accord one so hopefully I will settle down in a few weeks. The nurse told me to give it at least 3 months.
C x
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