Bone mets intermittent pain

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Hi everyone. I have mets in my pelvis. I’ve been on letrozole and Ribociclib since August. My last scan in Nov showed regression. I had terrible pain until around mid October. Since then the pain has totally eased off and most days I don’t even take paracetamol. Over the past few days though I’ve been getting a grinding type pain.
my questions are:  is - is it normal for the pain to just randomly come and go? Does the healing - ie sclerosis of the bone - itself cause pain? Of course, I do wonder if the pain means the cancer is growing. I know that’s probably not rational but I don’t suppose I’m the only one whose become less rational than they used to be!

Any advice or experiences gratefully received. 

  • Hi

    I have mets in my spine.  I have had three cycles of Letrozole and Palbociclib and currently in my week off.  My back has been sorer for a week but seems to be easier the last two days.  Like you I’m worried.  I had bloods done today so have a telephone review tomorrow and will be asking about it.  I have my first three month CT scan next week so am a bit worried that there is progression too.  I will let you know if I get any advice tomorrow but would be good to hear from others.

    K

  • Hello. Thanks for replying. I’m sure your pain isn’t anything to worry about. It’s probably the letrozole - it’s notorious for back pain. Before my first scan I was so fixated on all of my aches and pains thinking it was the cancer. Turns out it was the letrozole and since then I don’t notice the joint pain and muscle aches. 
    I seem to recall my oncologist saying something about the healing causing some pain - the bone is damaged by the cancer even if the tumor reduces. 
    keep me posted on how you’re doing. 
    Karen

  • Yes I agree these pains are probably nothing to worry about, just keep positive for your ct results.

    some of the medications we have to suffer do have so many side affects. 
    yesterday I had a ct scan which had left me feeling so weak and unwell, never happened before, I was told this happens but not a common side affects for all. 

    keep strong and positive and good luck for your results 

  • Hi Karen and Myla 

    Consultant rang and bloods are ok to continue my treatment - starting cycle 4 tomorrow.  He wasn’t any help re back pain just said need to wait for CT results but could be muscular or something benign.  I would have preferred a call from one of the Nurse Practitioners or Dr as they seem to be easier to talk to and reassuring.

    The pain has eased a bit so hoping it’s some of the meds.

    K

  • Good news that you’re ok for another cycle. You’re right, the consultants can be a bit brusque. They should understand your natural anxiety and try to reassure you.
    Can you call the nurse?

    Assume your last CT was 2-3 months ago? I would be very surprised if three cycles in your cancer has grown or spread further. It really can’t grow  so quickly that it’s causing new pain. 


    My onco tells me that living well with stage 4 cancer is a mind game. You’ve got to learn to control your thoughts. Easier said than done of course and I’m not there yet but I’m a lot better than I was a few months ago. It will get easier. Please let us know how your next scan goes. Take care. 

  • Hi KNI

    Ive got bone mets as I was diagnosed a year ago with lesion in lower spine,  my back pain comes and goes really. It can be worse at night so I take codeine before bed. Sometimes I don’t need much else throughout the day, so I think it can vary.

    im on letrozole and ribociclib cycles which can cause bone aches as a side effect, which is really unfair!! I’m about to start bone strengthened too. My last 4 ct scans every three months show no changes. When I began the treatment I’d had terrible pain in my lower back and right hip which since treatment has diminished loads.

    my macmillan nurse said the drugs work well together to control the cancer and said my pain may improve, I think she was right.

     I know how hard it is to not worry or panic at any new pains but sometimes it’s not the cancerGrinning

    If things are getting worse then it should show on quarterly ct scans, let’s hope and pray it’s all under control for you and me as I’m due my scan next week  Fingers crossed 

  • Hi Starflower. Thank you for your message - it’s so encouraging to read about your positive experience. im reassured that you experience variations in your pain. Since I posted, mine has gone away again. I’m going to keep a diary because I think pain flares up in the middle of the ribo cycle. in a similar position to me in terms of bone mets and treatment.

    Overall I feel pretty good on the meds  I was expecting a lot of bad side effects but apart from letrozole hot flushes and bone and muscle pains, I feel great  it’s just the nagging fear of progression that gets to me sometimes but I guess that never goes away  

    It’s great that you’ve had 4 good scans. I wish you well for scan number 5 - let me know how you get on. 

  • I am on 3rd cycle of Letrozole and Ribociclib, ( initial diagnosis in November was bone mets)so expecting a CT scan next month. The closer it gets the more I convince myself it'll be bad news. I know I am being irrational, but the not knowing is the worst. And I am not the most patient person on the planet.  Any advice on trying to be more positive? Has anyone ever had this combo of drugs not work for them? I have good days and bad days, still trying to get my head round it all. X

  • Hello. I’m on my 6th cycle of same drugs. I have bone mets (pelvis only). Started drugs July/Aug.  I had my first scan late Nov. Like you I was sh*tting it. Loads of aches and pains, thinking the worst. Scan showed regression! After that I realised most of my symptoms were letrozole not cancer. Had a great Christmas. Now leading up to another scan soon so worrying about  everything. It’s Mad because I actually feel fine - working full time, leading a normal life. But the worry never goes away. I have minimal pain. Don’t even take any pain relief. But the closer I get to a scan, the more I feel every twinge. I totally understand your worry. Rationally, I know we’re both being ridiculous but I’m afraid that this constant worry is just our life now. The drugs work for most otherwise healthy women. Unfortunately some women are still nlucy and we don’t know which we are yet. Uncertainty is our new normal. Please stay in touch. 

  • Hi, I'm just starting my 5th cycle of Ribo & letrozole & just had my 3 month scan & like you I'd talked myself into it being bad news. 

    I had the results yesterday by phone which blindsided me because I was expecting the results at oncology appointment next week.

    All was good...working well & good regression in areas. They were pleased & said it was a really positive result.I was diagnosed in lymph nodes, chest wall, clavicle & who knows where else !!

    I've found that the last 3 weeks I've just started to feel like me again. No major side effects & fatigue easing .

    The waiting is awful but in the words of my oncologist she said she's not worried & if this line of treatment doesn't work she had a bucketful of drugs to try !!

    Good luck with your scan....we can all do this & thank god for this site it's been exactly what we all need