I am bone mets only since 12/2018. Lesions include the right and left hips.
Recently, I've started to feel a throbbing, achiness on my left leg (right feels fine). This sensation has been happening on and off for the past 3 weeks. This week it's becoming more persistent and uncomfortable. The pain goes away w/ two tablets of Ibuprofen. I haven't taken up any new exercises, etc. so not sure what's causing this.
My last scans were 10 weeks ago and they were somewhat stable....decreases to some lesions, slight uptick to others. My onc was overall 'pleased' with the results. I have PET/CT scans next week.
If you have bone mets, have you had this type of achiness/throbbing and if so, was it a sign of progression?
Thanks in advance for your insight.
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Jonesburger
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Where in your legs is the ache? Like in a bone, or in a muscle?
I often have aches and sometimes cramps in my lower legs/calves, which i attribute to a potassium (or magnesium?) deficiency. I take an rx potassium supplement to cure it...but a banana might help, if that's the cause...
If it's in the upper leg/thigh, and feels like a bone, it's possible that it's related to mets there? I have similar, but the sensation is mild...
I wish you good luck with it...Maybe try the potassium (pill or banana form) to see if that helps? But I'd also mention to your onc, just in case...
Hi Lynn, thanks so much for replying. The aches/throbs sometimes start from the side of my left bum then gradually starts to go to the front of my thighs, then all the way down to my shins. I can't tell if its bone aches or muscle aches. It doesn't happen all day...just starts to randomly start up. Sometime while I'm sitting eating dinner (last night) or other times when I'm taking a walk around my neighborhood (two days ago).
I have a smoothie almost every day which incorporates spinach and a banana so maybe I'll add a few more bananas to kick in extra potassium. I also take Calcium and D3 supplements which my Onc knows about.
On Tues, I told the Nurse Practitioner about my aches and she's made a note if it. It's also another reason why they moved up my PET/CT scans for early next week (Monday) from two weeks from now. They want to have the results in time for next Thursday when I'm scheduled for my monthly Faslodex/Xegava shots and Onc visit. The Onc will go over the results then.
I have bone mets too except there are too many lesions to mention. In my situation once I start a new treatment and around the third month my pain or aches change or increase ...for me I know this chemo is not working as well as it should be. This last time I experienced pain in my right side radiating down my front thigh and has a tingling sensation down my leg to my toes. I had a pet scan a few weeks ago and the results came back no new lesions but the SUV has changed a lot some from 3.5 to 20.8. TM up . I think it is great that you are keeping up on top of your different aches and pains.I have been following mine for 4 years and I have not been wrong yet . You take care and I hope the scan shows only good changes for you
Shelby, thanks for your note. Interesting about you getting pains/aches after the 3rd month of a new treatment. The only treatment I'm on now is monthly Faslodex and Xgeva. I've been on Xega for about a year and Faslodex since January. I'm trying to remember if I felt any type of aches when I started those treatments. I have scans next week so I'll let you know if they find anything.
Hi,
It’s difficult to say for sure what is causing the leg pain. You mentioned that you have not started any new exercise recently, so it’s not that. Hopefully the PET CT scan will let you know that there is no evidence of progression. Perhaps you can have your electrolytes and other tests done to see if you have a vitamin or mineral deficiency.
Hi Sophie, thanks for that suggestion. I'm due for my monthly treatment next Thursday (Faslodex+Xgeva shots) and they always start with a blood test. I'll ask the nurse if they have any other tests to check for electrolytes. A few months ago, the nurse that took my labs told my onc she noticed my calcium was a bit low so my Onc told me to take calcium supplements. My calcium went up back to normal once I was on them. Hopefully the nurse will notice again if she sees any mineral/vitamin deficiencies.
Are you on Femera or any other medication to block the estrogen? I am on letrozole and my onc attributes most of these pains to the pill side effects as my bone scans have been stable so far. Sometimes moving around more and walking helps. If I am not active it's worse.Some days it flares up more then others.
Hi Sunny2020 - The only treatment I'm on currently is monthly Faslodex shots and Xgeva shot (bone strengthener). I do wonder sometimes if the lack of exercise is partly to blame for my aches.
Prior to Covid shutting us down, I would commute to my office in NYC which involved walking 15 blocks to my first train, then taking second train, then walking about 6 blocks to my office. I live in a 3 story home so I was also running up and down all day. Kids, laundry, dinners, etc. I would also take pilates class 2-3x a week. Fitbit would clock me at about 11K steps per day.
Since Covid, I've been working from home and my pilates studio is still closed. I've just been doing a little yoga at home (via YouTube) and occasionally ride my bike to the nearby park. I stopped biking to the park after I saw how crowded it got and saw many people not wearing masks while running or biking.
If my scans next week shows no progression and I get the green light from my onc to do more cardio/exercise, I'll start biking again. My park seems to have thinned out a bit now that kids are back at school.
Hopefully no progression. I think we all get worried with any persistent pain. But I have had lots of incidents of persistent pain, and of course I try not to worry but it’s hard! But each time it wasn’t progression.
Hi. I’m wondering if it could be sciatica. I had a car accident in 2013 and had excruciating pain and burning from my butt down the front of my leg. I could barely function it was so bad. I may be way off base but just throwing out another idea.
Before I was diagnosed I had bad pain in my upper leg and hip. Thought it was sciatica. It gradually improved with the treatment. I couldn't shift it even with tramadol.
I would talk to your oncologist and get it checked out. Good luck. Take care. Carolynx
Sadly, sounds very similar to my wife. We thought she had sciatica through the summer of 2017, but she was diagnosed with bone mets that winter. Oddly, the pain went away shortly afterwards but by then the damage had been done. Although her condition has worsened since then, thankfully she is not in any pain at the moment.
I also think Sciatica. For almost 3 years I was on Ibrance/ Faslodex combo. After a few months into the treatment I asked the nurse why it always took her so long to find just the right spot to inject the needle. Her response was: we have to be very careful NOT to hit the sciatic nerve. So my thought goes to assume that your pain might be sciatica caused by the Faslodex shot. Very painful but treatable, and better than progression.
Hi, I get leg pain in both legs and feet from time to time, sometimes quite sharp, sometimes dull. It comes and goes. I also have lots of bone mets in spine. I've told onc and she seemed unconcerned, suggested exercise (I do lots and it certainly seems to help). I also have acupuncture and use FIR heated mat which is lovely and soothing. Hope it eases, Gill x
I had knee and leg pain. Decided to go to my regular physician. He sent me for an x-ray. Turns out I have severe Osteoarthritis in both knees/legs down to my feet. Right side more advanced. Prescribed pain meds as needed and Voltaren rub. So not cancer related at all.
My bone met is in my hip. I am now a weather predictor as there is also osteoarthritis. I take 4 Advil when it is bad...and then it often rains! Amazing, right? Also, I had pain in my hip and upper leg that I was certain was progression. No, it was neck and shoulder tension from typing and knitting. I am not kidding. Massage let it all loose. Dropping my shoulders down and rotating my neck relieved part of it.
Before Covid I was doing yoga at a studio 5 times a week. I have tried yoga via Zoom, but do not love it. I get distracted. Been swimming and riding an exercise bike, but not the same. Clearly need to sort this out!
I can only guess but from what I’ve learned, I’ll offer the following:
I’ve just recently changed protocols (from Letrozole +Ibrance to a monthly Faslodex Injection) and am treated at the Seattle Cancer Care Alliance. When I received my first injection, I was informed that this injection is no longer given to buttocks but to muscle between the hip and the upper leg. The reason for this is that it has apparently been discovered that many women have had their sciatic nerve hit by the needle. Your description sounds to me like sciatica.
I hope that your pain is resolved quickly. If you lie on your back and point toes to the ceiling (stretching calves in process) this can often relieve sciatica. Hold position for a minute or more.
I have done this stretch for Sciatic pain and found it really helpful.
Standing straight, arms out to the sides shoulder level, slowly raise one arm up to the ceiling, and lower the other arm down to your side. now gently stretch the upper arm upwards and at the same time stretch with the other arm downwards. Return to beginning. Switch to the other arm up and repeat. Do slowly three times. This has helped many people I know. I think what it does is it releases the pressure on the nerve and sometimes releases it. Also realigns your spine. You should feel the difference right away. Hope it helps.
I'm on Ibrance (100mg), Anastrozole, and monthly Denocumab injections. I have moving aches and pains all the time. And I do get that feeling you are talking about in my thighs often.
What I think!?!?
I often think any ache or pain is Mets/cancer progression. It's very natural to think this, I think. But I am not sure if it's the Ibrance ore the Letrozole or the Denocumab/Xgeva (I think you all call it) that may be causing it also.
I have had so many unrelated things happen to my body, both in my life and since diagnosis. For instance, right now, I keep feeling a very sensitive spot on my Forehead, and the first thing I think is that the skull mets are on the move!
But I think Lynn is right in that you should ask you Doc/Onc. Because we just never know do we?
It's so scary this trip. Scariest trip I've ever been on.
Hi Everyone - thank you all so much for your replies, anecdotes, suggestions and best wishes. It really has been much appreciated.
It hadn't dawned on me that what I was feeling could be from sciatic nerve damage. It made me remember that about 2 months ago my Faslodex shots were given by a different nurse and I felt pain the next day that lasted for over a week. My oncologist told me that the pain might have been caused by the needle hitting a nerve. The pain went away about 2 weeks later and I've since had another Faslodex shot that didn't cause me any pain. But I do remember that after I got the shot that might have hit my nerve, sometimes I would have difficulty standing for more than 10 minutes because my left leg felt weak.
8576 Thanks for the tip on that exercise. I followed your instructions and ended up finding more exercises online which helped lessen my pain.
SeattleMom - Thanks for your exercise tip. I now start my morning and end my night doing those stretches in bed. More importantly, thank you for mentioning your cancer center is now doing Faslodex injections between the hip and upper leg (no longer on the butt cheeks). I'm going to send my onc a note tonight to see if this is a protocol that they will be following too. I tried to find info online to send to my onc about this change but couldn't find anything but hopefully she'll be aware of it.
GollyG - you got me curious about the FIR mat and so started researching the benefits and now I'm hoping to buy one this week.. I don't like needles, but I have heard good things about acupuncture. Since my insurance covers it, I'll look into it a bit more.
Today I had my PET/CT scans. I will meet with my oncologist on Thursday to go over the results. I hope to know definitively what's causing this pain.
My additional aches in the hips have turned out to be bursitis and drinking lots of water has helped. It was scary at first because it was in the opposite hip from where my mets are . It's easy to go straight to the thought that it has spread further, so I was really relieved that it was just pesky bursitis! Will be looking for your update!
Personally I can predict where my new bone mets are by my pain. When I start having new, consistent pain I always tell my oncologist. It seems to take him a couple of months to either believe me or to see if it goes away. Each time he has pushed up the date for my bone scans and each time it showed progression. That is just me though. I have a tremendous amount of pain with my bone mets while others can’t feel them at all. Mention it to your oncologist
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