I’ve been diagnosed with very advanced and invasive lobular breathing cancer in 2021. ER8 PR8, grade 2, stage 3 with 3 lymph nodes involved. Had 3 surgeries as I had very bad infection after my mastectomy with imidiate reconstruction and full lymph node clearance; 5 months of chemo (4EC and 12 Paclitaxel) and 15 radiotherapy sessions. I’ve been in medically induced menopause since November 2021 and I am on 3 monthly Prostap injection and also Zoledronic acid - have two infusions left. Next one in April.
I’ve been on Letrozole for over 2 years and been struggling with really bad arthralgia especially my knees. It’s been really bad recently. I’ve been doing exercises and also acupuncture but the pain is really bad and can’t get off the sofa. I am 46, 43 when I was diagnosed, but am feeling like an old person. My oncologist suggested me trying another AI and if that doesn’t help than switching to Tamoxifen. What is the point of trying another AI if they have the same effect!?!
There is no Tamoxifen on the NHS predict tool so I really want to hear what everyone who had the same experience thinks about going on Tamoxifen. I have another 5 years of hormonal therapy to go through. Anything to be aware of like side effects, etc.
I am on Abemaciclib at the moment (started in June 2022) so I need to finish that treatment in the summer before any changes happen. It’s important to have the combo of Abemaciclib and Letrozole as I did started them together. It hasn’t been an easy journey. Especially with the Abemaciclib - I had inflammation on my lungs they think is from the RT but there is no much info about the effect of Abemaciclib on the lungs. Lily Elly doesn’t really report anything in the 5 year MonarchE study…I really want to see the results from independent study not one sponsored by the manufacturer…
Letrozole is the top AI but also very toxic and I am not sure if I want to go on Tamoxifen. Maybe I just need to suck it up…is just so many things to consider and I am not sure if I want to change to another drug and get another set of side effects…but I’ve been really struggling with joint pain… Any suggestions would be much appreciated!!
Hi, I’m on the same medication as yourself. Commenced Letrozole August and Abemaciclib October. I don’t have much joint pain but do get bone aches. I’ve found increasing my vitamin d has improved the aches. My memory is suffering, left my straightener on this morning, it’s was only them beeping that alerted me about an hour later, just thankful I didn’t cause a fire.
These medications are so harsh, I hope your joint pains improve. Some days I feel I can do this and other days I feel Pretty rubbish. I just hope they stop recurrence.
Hi there. I was an anastrozole and Letrozole before being switched to Tamoxifen. On the two aromatase inhibitors I had trogger finger, arthritis but the most concerming was the swelling of my feet and legs. Even more alarming was swelling of my DIEP flap reconstructed right breast. I thought it was due to a short 4 hour flight. My breast and right side felt as if there was a rod in my side…similar but worse than when I woke up from mastectomy with a tissue expander. Have been on low dose Tamoxifen (oncologist is titrating my dose slowly). Much less swelling of legs and breast. Minimal arthritis and no trigger finger. Very glad that it is bone protective too. Will continue to get transvaginal u/s as I had endometrial thickening prior to BC that was treated with D & C. Wish you all the best and congratulations that you’ll soon be finishing Abemociclib!
Hi, I’m so sorry you’ve had such a hard time. I’ve just gone the opposite way from two years on Tamoxifen to Letrozole, but I can share my Tamoxifen experience.
I did get arthritic type pain in the first couple of months in my left hip. Quite painful and some days I couldn’t even get over a style when out walking my dog. It did get a lot better and I noticed that if I pushed on then everything loosened up and I had a lot less pain. I think that’s important. It’s not easy to keep moving when in pain but it’s important to do so as it lessens symptoms.
Everything else was a bit of annoyance, bit of hair thinning, dry skin, mild insomnia but I took it religiously every day. Wanted to do everything I could to stop a recurrence. Everyone’s experience is different but many people tolerate Tamoxifen well. Best of luck x
Hello!
I did 9 months on Letrozole and found the joint pain so debilitating and ageing (I was 48 when diagnosed and sporty). I have switched to Tamoxifen and joints are now absolutely fine. Also has been better with “dryness” which was an issue on letrozole.