New medication after 12 years on Tamoxifen

Hi Jayhay 

I'm sorry to see that no one's yet come forward to tell you about their experiences with these drugs that you're being offered, especially as I recommended that you joined this group for help and support.

I've found that if you type the name of each of the three drugs separately into the search bar at the top of the page, you'll find some previous posts which mention them. You could have a read through those and respond to any of the more recent ones if you think the posters can help you further.

Wishing you all the best with whatever you decide to do

x

Hi, I have been on Palbociclib, Letrozole and Denosumab injections- not the zoledronic acid is the only difference For a year now. The Palbo and Letrozole I think go together as a set as they compliment each other is my understanding?? Compared to regular chemo, the Palbo has fewer side effects and is a new drug to the NHS in the last few years. With this combo, my side effects are liveable with- I’m now 38 so I have hot flushes and everything that goes with the menopause anyway. I have some hair thinning and some achy bones but my secondary is in the bones so unsure what pain is cancer and what is side effects from drugs. The Palbo is 21 days on- a tablet every day and 7 days off where your bloods are tested before you get the next months- I’m sure maybe something similar to your experiences already. Letrozole is a small tablet every day. Palbo is a targeted therapy for our specific type of cancer. Not sure how much you know already. From reading other people’s experiences a lot of people have very few side effects on these two drugs but I know everyone is different! I’m prob a little More tired in 3rd week of Palbo and sometimes need little power naps. I’ve rarely had low bloods- the twice I did have were only marginally low and they reduced the Palbo dose from 125mg to 100mg. Think there’s a 75mg as well- depends what suits your body! Ive been told that there are more drugs coming behind Palbo if that ever stops working but not sure if there are many long term stories yet as a lot of people have only started on this drug! Not sure if this info helps any? Feel free to ask me any questions! Oh and so far the drugs have stabilised my disease progression from my 3 monthly scans.

Jo x

Thank you Jo, appreciate sharing how the meds affect you. I’ve also had a chat with BC nurse and although thinking about side affects is scary the more I hear from others the better I feel. Next Friday I’ll see my oncologist again.

Jan 

Hi Jo 

can I ask for some history from you? I’d like to know at what point a year ago what was happening for you to start on Letrozole and Palbociclib?

did you have back pain ? Can you share what the pain was like?

did the CT scan show your secondaries on spine?

everyone says to expect pain but I don’t know what that’s like as no pain at moment. I hope you don’t mind, if you’d rather not answer that’s ok.

Jan 

Hi jayhay- yes you can ask me anything! I had some pain in my breast with an inverted nipple and what felt like a large soft ball in breast. My GP sent me away twice telling me it was hormonal despite me explaining about family history with my mum and sister both having had breast cancer. 6 weeks later I still was complaining and went a third time to gp-I then got referred for just the breast which they said was curable. However during the time I was sent away, I had a pain develop in my back that felt like a pulled muscle- I put it down to reaching for the car boot and feeling a ping in middle of my back on one side so that’s what I thought it was. This did not improve over the next few weeks. I mentioned this pain when I was told I had breast cancer and I had a CT scan to check which showed a tiny spot on my spine and pelvis. I then had a bone scan which showed a bit more and so was told it was secondary. I lived in Scotland at the time and I transferred my care home to Ireland to be near family- I had scans again- PET scan and another bone scan which showed more spots in various places. My treatment plan straight off was the Palbo and Letrozole with Denosumab injections, zoladex injections and calcium and vit D. I was told they were not removing tumour in breast as it was a good indication that the treatment was working as I could feel the breast but not the bone. Then had breast tumour removed a year later which showed that the tumour in breast was dying from the inside out and had shrunk. Cancer cells in my bones were dying and some bones had begun to heal a little on these treatments. I was also a rower for years and any aches and pains in back I put down to old rowing injuries. Basically felt like a pulled muscle. However the scan did show inflammation around my spine and hip where the spots were so I think the pain may well have been muscular! As I was waiting for treatment I think it spread a little more in pelvis- this pain is like a constant bone ache that eases if I move- sorer when sitting for long periods or lying down but kinda chronic pain that I’ve got used to. Everyone is different though and I’m unsure if yours is bone or elsewhere? I think these drugs are given to a certain type of cancer as it is a targeted therapy so hormone positive and her2 negative so I think the drugs are for this type of cancer no matter where the cancer is in the body! I’m not sure if that answers your questions but if not, feel free to ask more! I think I would be going about my life as normal on these drugs if it wasn’t for covid and the fact that I’m trying to decide whether to stay in Ireland and find work or move back to Scotland to my work and my friends where I’ve been for 15 years!

Sorry this is my first treatment jayhay so I’ve had no other before. I was diagnosed with secondary cancer as a first time diagnosis. When my mum had cancer in 2014-2016 this drug was not available on the nhs anyway and lots of people have good reports on these drugs with little side effects! I also have side effects from hormone treatments so a little difficult to know what’s causing what!

Thank you, really appreciate this as I’ve had no one explain the pain, which so far I have none. Which means that I’m on arimidex from today, another hormone therapy. I do hope you can enjoy each day as much as possible and get back to Scotland except for COVID!

bless you

No problem- I am on low pain killers and feel my go to is a hot water bottle at night. I am reluctant to up my pain relief unless I really need to. I’m not in dire pain- more an annoying chronic background pain. I get on with my day and rest when I need to. A lot of people don’t have pain which is great! I also think I’ve more pain when I’m stressed and not sure if it’s muscular or bone sometimes! Hope you get on ok! Good luck with your new treatment! Xx

Hi Jo6 how are you getting on with Denosumab

Hi Spicegirl

Im not really sure to be honest- I know that sounds a little weird but I get the injection every month and just see it as part of my treatment. I have various side effects but I’m not sure what causes what. I just had a bone scan and a CT scan last week so I am waiting on those results so might know a little more after that. How are you getting on with everything?