Letrazole, Ademaciclib & Zometa questions

Hi LottieWat, my oncologist introduced himself, while I was at an appointment with a different Dr in his clinic. I've never actually had an appointment with him, during my cancer journey. I srarted chemo March 2024, had surgery in October, then radiotherapy in December. I have been on Phesgo over the past year (last injection next week), I have zoledronic acid infusions every 6 months as a preventative (my bone scan showed good bone density). I'm also on letrozole for 5 years. I would definitely question about the bone transfusion as a preventative, although it maybe an age thing, I'm 62. Xx

Hi LottieWat 

you are entitled to ask for a second opinion / move your treatment to a different trust if you aren’t happy. 

Do you have a key worker you can talk over your concerns with? You shouldn’t be left with questions. 

my diagnosis / treatment is different to yours and I found out information from reading my notes about one of my surgeries that I wasn’t happy about / didn’t understand. I spoke to my bcn and she arranged an appt with my consultant. It’s really difficult standing up to stuff but you need to feel heard and have an understanding of your treatment to the level of detail you want. 

I do understand it’s difficult for the medical team - under so much pressure and also having to gauge us as people and how much info we each want. However, your body, your treatment - make sure you feel comfortable with what’s going on.

Good luck x 

Hi,

I’m now 71 and was 69 and 11 yrs post menopause in April 2023 when I had excision of small grade 3 tumor and sentinel lymph nodes, 2 of which showed spread.

I was given to understand that I’m having Zometa infusions to help prevent spread to bones. (Due to have no 5 of 6 in July). I have known 2 people some time in the past whose breast cancer spread to bones, so was quite keen when I was offered this.

Im having letrozole as the cancer is 8/8 ER+ and was told it was what you had as a post menopausal person to inhibit oestrogen being made by your body. I’m 16 months into 5 yr prescription, 

Im 1 year into 2 year prescription of abemaciclib. Was told it had been relatively recently approved by NICE for aggressive, high risk of return, oestrogen dependent , unreceptive to Herceptin, primary breast cancer. ( other situations too ). Really didn’t fancy it when I was given the leaflet, but it’s been okish, still on 150 mg dose. 

I really feel for the pre menopausal women going through this, trying to return to work, raise children, cope with elderly relatives…Or people who have had to give up their HRT and take these drugs. As it is I have menopause symptoms worse than when I had actual menopause - it wasn’t bad at all for me really. Also I’d hate to be trying to work as a maths teacher, which is what I used to do. 

Anyway, that’s me and what I think are the reasons for my prescriptions..

All the best, xx

Hi LottieWat,

I'm sorry you are feeling like they aren't pulling out all the stops! I can imagine it's really unsettling! if you are anything like me you want everything chucked at you! I'm in my 40s so older but finished chemo in December. If you have ER+ and have a more aggressive breast cancer (grade 3, larger tumour, Her2 +) I think they generally offer Zoladex to pre menopause woman which suppresses estrogen production and will put you into the menopause and then you have letrozole which also decreases estrogen hormone....if you weren't having Zoladex and still pre menopause you would have Tamoxifen. I'm on the 'radical' treatment plan and I have zoladex injections every 3 months now and letrozole but I also have the bone infusions and I would definitely question this, I'm not sure why you wouldn't have them!

Hope this helps.

Xx

Hi LottieWat, how are you doing?

I had my first Zometa with my 2nd cycle of chemotherapy and my next one is booked in for June due to the increased risk of osteoporosis caused by the treatment and also as a preventative for bone cancer.  Will be having it 6 monthly I think for 5 years.

Can't comment on the hormone therapy as I don't have my full plan yet but I have signed consent forms for Letrozole and ademaciclib I believe. 

I start radiotherapy tomorrow for 15 days and I'm post menopause. 

I have been lucky, I have seen my oncologist at least once a month since January and she has always said if I want to see her between appointments just call up and she will see me.

Sending you hugs x

Hi Lottie

I'm 49 (so a bit older), but was pre-menopausal when I was diagnosed with ER+ in January. I've had 4 Zolodex injections so far, to put me into the menopause and I'm now taking Letrozole and Ribociclib (this is before surgery to try and shrink the tumour). 

I've been told I will need to continue with Zolodex & Letrozole & Rib after surgery. I think that Letrozole is often given with Zolodex and chemo medications. 

I will be taking Letrozole for 10 years and Ribociclib for 3 years after surgery. My tumour is 70mm. 

I've been told I'll  be prescribed Bisphosphonates after surgery to help with bone density and help prevent bone cancer Has this been discussed with you as a possibility? Might be something to ask.

I've never met my named oncologist either, I tend to see someone different most of the time, which is very frustrating as I often get mixed messages. 

Wishing you the best with your journey.x

Hi, I’m post menopausal but I was given zometa infusion with my 3rd chemo and I’m then having it 6 monthly for 3 years. The reason my oncologist gave for recommending this drug, is that studies have shown a small reduction in bone metastasis when receiving these infusion and he said we take every percentage we can get to reduce recurrence. They will be NHS guidelines (usually by NICE) on the treatments you should receive. I am also on the 2 year course of Abemaciclib. I believe NHS guidelines say this drug should be started within 12 weeks of starting hormone therapy. If I was you I would get the Abemaciclib started and then ask for a second opinion on your treatment plan given your concern about not being offered zometa infusions as a reason. Well done for advocating for yourself and then being offered Abemaciclib, but you should not have needed to do this. 

Thanks Daisy24 it seems there is a big variation in how engaged your oncologist is depending on the trust you are with, and also the individual approach of the oncologist. I had a good chat with a lady at Maggie's who suggested I request a different oncologist for my ongoing treatment, so going to try that so I have a bit more peace of mind.

Thanks for the info on zoledronic acid - seems like I need to ask, though the Maggie's nurse was v knowledgeable and suggested I might not need it, maybe due to being on the abemaciclib.

I hope you're tolerating all the side effects and life on the letrazole, I've seen you're a very active member on here - thank for taking the time to respond and best wishes with your continued treatment.

Lottie

Hi bobof  it seems the system is just not 'joined up' well enough sometimes. I understand by BCN is supposed to help with stuff like this but at the hosp i'm at its a large team and I don't have any sort of relationship with any of them, which would be nice, and haven't found them very responsive from the beginning. It was different with the oncology nurses who were super helpful and informative. I think I've put my own barriers up by not being proactive calling the BCN team because I find interactions with them frustrating - so i think i just need to get over that! As you say, it just gets pretty tiresome having to constantly advocate and double check you are getting the best treatment.

All the best with your journey x

Hi Cynoptimistic thanks for sharing your experiences with me. I'm glad the abemaciclib is ok to tolerate - I want to try it if it has the best chance of keeping me alive. I have been working at about 80% through chemo but after speaking with some other patients at Maggie's last week felt empowered to request 4 weeks off whilst I go through radiotherpay - a very good decision so far! I need this time to emotionally process everything more than anything else, and get settled on the new drugs.

I'm sorry you have known people with spread to the bones. Unfortunately metastasis keeps me up at night too and I have heard/read too many sad stories. So it's good that we are doing all we can to try and prevent it.

All the best with your continued treatment,

Lottie