Hi

I am exactly the same.

Been on letrozole for a few years now and I suffer all of the above and I',m exhausted now after long walks which I used to do often.

You're def not a hypochondriac and I wonder how you are now 3 years later?

Hopwe you are well

X

Hi jolamine,

I had lobular BC with a lumpectomy and cells in 3 nodes then chemo and radio.

I think its 5 years for the letrozole

After that I got diagnosed with bowel cancer ( not related to the breast and not spread thankfully) after a routine check that I wasn't going to do!

Had an op for that and no chemo. 

The Letrozole apparently is a good drug, it just doesn't like me...

Hi I am also very new to this.

I was diagnosed with breast cancer in October 2019.  Had lumpectomy and 6 lymp nodes removed.  Then radiotherapy in January.  Started Letrozole in February.  I put on a bit of weight, I have tried the Keto diet (not strictly) but having done this before with good results, I thought it would work.  It doesn't. Seems to be all around my middle.  I am now 60, and before lockdown walked to work every day so thought that this is what needs to be done.  Tried walking 4 miles in my lunchbreak whilst working from home but still nothing shifts.  When I mentioned this to my oncologist at my follow up appointment he said it was too soon to gain weight.  But I know my own body.  I also have achy arms, and back pain and pins and needles in my left arm (my lumpectomy was on the right side).  My breast nurse said you would ususally get this in both arms.  My GP says he thinks it is because of the Letrozole and suggested I wore a splint at night.  Did do this and seemed to work.  Sorry I am going on a bit.  Just want to get it all out.  I suppose the long and short of it is - I dont want the cancer to come back and if I have to take Letrozole for 5 years then so be it.  Seems that these side affects are the 'norm' - terrible thing to have had and I wish everyone a healthy lifexxx

Hi Lilybean,

if you have the time then read back through this thread, there are many many ladies suffering side effects of Letrozole. You don't have to stick with it. There are are other drugs available. I have used four and Letrozole was the worst. I now take Aromasin, also called EXEMESTANE and am much better. I don't have any side effects that I notice and it suits me very well. It is a newer treatment than letrozole. Ask your consultant to try a different one until you find one that suits. I will be five years clear in January, but, what they don't tell you, is that they want you to continue with the medication for another five years after that. Ten years on Letrozole? I don't think I could have done that. The side effects are very common but they should not be "the norm" for your life, you have had a hard enough time to get this far, you are entitled to a better daily quality of life. I had chemo as well as radiotherapy and hope I never have to go through it again so I take my tablets. 
Just ask for change.

All the best.

sue

Thank you for your kind reply.  I will have a read and like you say I should find out about trying a different tablet.  Having been on it for 7 months I thought I would have adjusted by now - I suppose you  just get used to the side effects and am sure there are a lot of ladies out there who are having worse side effects than me.  

Thank you again for your response.x

Hi Mischief,

I'm sorry to hear that you've been dealt a double whammie with the bowel cancer. I was diagnosed with a second breast cancer a year after the first. At that time, I had taken Tamoxifen for a year and I changed to Letrozole, which I stayed on for 7years. I came off this in 2017.

Have you discussed your problems with your oncologist or consultant? There are other drugs that may not cause you the same side-effects.

kind regards,

Jolamine xx

Hi again, I havew phoned my breast care nurse yesterday on numerous occasions and left a message but still waiting to hear back.  Have also phoned my Oncologist's secretary but she has said that the first thing I need to do is speak to the breast care nurse who would then refer me to the Oncologist who would then arrange an appointment.  I am forever hopeful someone will get back to me today......and am going to suggest Aromasin - be good if it wiped out the pains in my arms and the pins and needles plus the bit of weight gain.  Watch this space and thank you again for your suggestions.x

Hi Lilybean,

good luck, don't let them fob you off. There are many drugs on offer. Remember Aromasin is also called EXEMESTANE too. 
hope you get the help you deserve.

Hi Snowdrops,

Thank you - will let you know how I get onx