Secondary breast cancer in the bones

Hi Sascha welcome to the forum and sorry that you have had to find us but sounds like you have come to the right place for information and support.

I saw your post and didnt want you to think no one had seen it but I dont know enough about the question you are asking to answer with any useful information. However, I feel sure that one of the other folks on here who have had this type of treatment will be along soon hopefully with answers to your queries. 

Glad that you have decided to pop by and hope that you find having joined, this is useful for you. Best wishes for now. x

Thankyou so much replying to me, I appreciate you taking the time to read it. Yes hopefully they may be someone out there that is in the same situation.  I think I've done the right thing by joining. Best wishes Sasch x

Hu Sascha - lovely to meet you although I wish we'd met in a pub rather than here.

I also have breast cancer that has spread to the bones (and liver). I don't take palbociclib (I don't take anything but Tamoxifen because my oncologist is a waste of space and wants me to wait until covid has gone  before prescribing something and/or telling me which bones it's in but that's a rant for another day). However, being the obsssive type, I have spent hours reading about the different types of medications and it seems to be common for palbociclib to cause joint and bone pain. 

Hopefully someone with actual experience will chime in who can offer more reassurance. 

Hi Sascha

ive been diagnosed with the same 3 weeks ago  I’ve been on Letrozole 2 weeks and have just been put on the other on Wednesday. I also had a bone injection on Wednesday too. My backs been hurting more today than it has and it’s a different pain to what it had been. So maybe it is the tablets. My partner read somewhere it does do this. 
Ive plucked up the courage to write in here today as I’ve been too scared to look before. 
My nightmare began after going to a and e with a bad back I thought I’d pulled or had a trapped nerve. They did a ct where they found something on my breast...total shock. Turned out I had stage 2 BC but also gone on my spine. I’m so upset because even the nurse couldn’t feel it so I never would have. I’m 46 so 4 years away from a mammogram. 

Im scared and frightened, have good and bad days. Everyone is being amazing and supportive but I thought it might help to write on here and speak maybe with people in the same position. I’m scato but tonight I feel I want to. Tomorrow I may feel different ‍

Bev xx

Hi Sascha, I am new to the forum. I was diagnosed with BC Aug 2016. Then with secondary Aug 2020. Gone to bones.. leg hips spine and ribs. Chemo started Oct, 3 down, 3 to go. Halfway there. Snuck in radiotherapy on my spine pre cycle 2..... boy that was a bit tough but walking again without sticks ( around house anyway). You don’t have to be alone.... although I have to say the only support I have had so far is my GP and oncologist......My chemo nurse has contacted a BC nurse for me so waiting for contact... it may help me with the pain which I keep hearing about... the paracetamol and ibroprophen has been tolerable so far but not sure if it will last much longer! I’m on various treatments which seem generic to me but lots of things now to ease symptoms. It would be nice to speak with others .... I’m feeling very positive and hope to bounce into next year with a list of todos! I look forward to engaging with the forum. Take care and be kind to yourselves xxx

Good .morning Sacha,  I have just saw you post. This is my first time on here. I am suffering from secondary breast cancer from  last year. It has gone to the shoulder bone of which I had  Proximal humeral replacement. I was put on  palbociclib and was also taking Letrozole.

I do experience slight pain and restrictions to movement of the arm. I also experienced elevated liver enzyme and found out this was cause by both palbociclib and letrozole.   I have stop both palbociclib and letrozole.  I have been put on exemestane unstead of letrozole and I a off  palbociclib for now.  I still have niggle pains not sure if it is because of where the cancer is and the type of operation. 

Hope this is helpful. 

Linda 

• Good .morning Sacha,  I have just saw your post. This is my first time on here. I am suffering from secondary breast cancer from  last year. It has gone to the shoulder bone of which I had  Proximal humeral replacement. I was put on  palbociclib and was also taking Letrozole.

I do experience slight pain and restrictions to movement of the arm. I also experienced elevated liver enzyme and found out this was cause by both palbociclib and letrozole.   I have stop both palbociclib and letrozole.  I have been put on exemestane unstead of letrozole and I am off  palbociclib for now.  I still have niggle pains not sure if it is because of where the cancer is and the type of operation. 

Hope this help

Remain positive and strong.

Be safe

Linda 

Hi Sascha 

im new to here too. 12 years ago my breast cancer spread to lymph nodes and a spot on spine, been taking Tamoxifen all that time, I’m unusual my oncologist tells me. I’ve had ct scans for the last 5yrs annually.

This time scan showed spots on 3 more vertebrae. I have no symptoms as yet but have to change hormone therapy to Letrozole.

i have been given info on Palbociclib and Zoledronic acid (a bone strengthener). At this point I, apparently can chose which other med to take! Frankly I’d rather not take a second one but oncologist and support nurse say it’s my choice, as I have no symptoms.

as I can see from other comments in this thread I’d rather delay.

i appreciate your concerns as side effects on Palbociclib seem similar to bone pain from cancer! So a double pain. I do hope you can get reassurance and am glad you’re here too.

Jan

Hi Sascha sorry only just read your post I was diagnosed with breast cancer in 2016 had lumpectomy chemo and radiotherapy fast forward to 2019 had pain in my buttock that then spread to my hip  thought it was sciatica went to doctors had a scan was told I had Bursitis anyway to cut a long story short I have secondary BC in my pelvis which has a fracture and a couple of spots on my ribs i had radiotherapy I’m on Abemaciclib tablets Fulvestrant injections and Denosumab injections I have pain and find this is worse a week or so after the injections but apparently they are the side effects I take co-codamol and naproxen for the pain maybe you could try that combination my oncologist told me to take the co-codamol regularly and not to wait until the pain was unbearable the naproxen I only take if I’ve done a bit too much walking /bending etc My latest scan has shown no further spread .It seems a lot of the therapy tablets have side effects eg bone pain hair thinning nausea etc as if we haven’t been through enough , try and stay strong I know it’s difficult . Talk to your oncologist about pain relief being in constant pain is something that they should be able to help with , I pace myself each day and make sure I don’t do too much in one day which helps I’ve learnt to know my limits which is hard . I don’t know if any of what I’ve said has helped . 

Hi Linda,

can I please ask you for advice. I have been diagnosed with breast cancer 2 yrs ago, no chemo,  only radiotherapy and Letrozole. I just had mammo, no results yet. But my question relates to your shoulder. How did you discover, how is being checked if it is cancer. I have been experiencing discomfort in my upper arm since 8 months but it was related only to special movements of my arm. But since like 3 weeks it is more often, more severe and started to be waking me up at nights. I thought so far that it is related to Letrozole side effects. But now Im a bit more worried. Should I contact my onco team? I would be grateful for your reply. Thanks