Unexplained Leg Pain

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kayrnic
kayrnic Member Posts: 1,708

Hi Everyone,

I'm really frustrated right now. I have bone mets in a few places......L2, illiac bones on both sides. My last PET showed stable (1/3/17). But I'm having leg weakness and pain in my right leg for about 6 weeks. The pain is severe sometimes. It's mid thigh to just above my knee. I haven't needed pain meds in the almost 5 years I've had this disease, but I am taking them now just to get some relief. My doctor sent me for an MRI of the low back and hip.....showed the few small cancer spots, a small cyst, and mild arthritis. Nothing she felt would cause me pain. Also had an ultrasound to check for DVT. It was negative. I am at a loss as to what could be causing this??? It hurts more when I stand/walk for long periods. It also hurts after I have been sitting or laying down for a long period of time and then get up! It's affecting my mobility and I hate it. Any of you amateur doctors want to venture a guess? Any suggestions as to what test I should ask for next? I was thinking maybe an old fashioned x-ray to check for a hairline fracture of my femur? I have been on zometa for 5 years and I know it can make bones brittle.

Thanks for any thoughts/suggestions!

Comments

  • Kandy
    Kandy Member Posts: 1,461
    edited February 2017

    Karynic, I really hate that you are in so much pain. Here is my thoughts, I sure don't want to scare you. I had one bone met of the ileum and had that radiated in 2013. Summer of 2015 my hip, leg started hurting. It was so bad I would cry at night time. One time it even caused me to pass out. They xrayed and did a CT, both were normal. Even did a Pet that showed nothing new. After 3 months with horrible pain and it progressing with how bad it hurt they sent me to an orthopedic that did a MRI arthrogram. That showed a small hairline fracture through the acetabulum. From there things got worse until I finally had major pelvis reconstruction. I was a CT tech, trust me if the MRI didn't show anything a regular X-ray will not. X-rays are less sensitive. But I think from my experience, I feel like things are happening deep in the bone causing our pain, we can feel it but it's not big enough for imaging to pick it up yet. I sometimes feel like with time whatever will show up. I think I would definitely go to an orthopedic to see what they think. Wishing you the best

  • stagefree
    stagefree Member Posts: 2,780
    edited February 2017

    hey Kay,

    You're not alone alıne with the pain sis! Since I fell on both knees pat summer, I occasionally am unable to stand up by myself for a couple of days, experiencing 9/10 pain (assuming 10/10 is death) for a couple of days.

    I have been unable to wear high heels since then-not a real problem- standing up for a while, sitting with feet down too long causes knees swolen badly.. Live on codein & morphine almost regularly now, even if low dose..

    I don't just blame the accident of falling down.. Been on zometa more than 5 years now, the AIs and medical menapause surely have SEs..

    Just received the the news of my baby liver mets .. Ugh.. More tests coming along

    As your dx buddy, I can say we've already had too much so it's only normal to have these .. Haven't checked the bones lately but feel too brittle to do anything anyway..

    Hope you feel up, more energetic .. I am a bit tired and feeling low lately..

    Huge hugs sis!

    Ebru

  • Bright55
    Bright55 Member Posts: 176
    edited February 2017

    Hi

    bone scans and density scans often indicate arthritic changes especially useful for spine and hip socket degenerative changes which can also give bursitis

    hope your symptoms quickly get sorted

  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited February 2017

    If you have been on a bisphosphonate, you might want to rule out a femur fracture. They are a rare, but well documented side effect. You are right; an old fashioned x-ray would be one of the best/fastest/cheapest ways to get a look. They should film front, back and side views, and whoever is reading the films should be aware of your history. If there is no radiologist on-site, and they are shipping the digital information elsewhere to be read, be a little dubious.

    Hope it gets better soon. Pain that starts affecting mobility is a real blow to QOL.

  • kayrnic
    kayrnic Member Posts: 1,708
    edited February 2017

    Kandy....thanks for the info! My only thought with the x-ray was that they mri'ed the hip and low back, not the leg. The leg is definitely where the pain is. By the way......how are YOU doing on your new meds? Praying that things are looking up for you!

    Sweet Ebru....thanks! I forget we are diagnosis sisters. I know that chronic pain is a part of this long road we are on, I am just one of those people that likes to have explanations. Even if there isn't much that can be done.

    blainejennifer-I was reading about the femur fractures with the biophosphonates. It truly feels like it's SOMETHING with the femur bone. My only doubt is that is it possible to walk around for 6+ weeks with a fractured femur?

    Thanks for the replies! I can always rely on you all for help and support.

  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited February 2017

    Kayrnic,

    Yup. You can even dance on certain fractures. If the fracture spirals in any way, it can be somewhat stable*. Crazy, right?

    Once again, make sure the radiologist knows your history. Some of these fractures are very elusive during imaging, and the doc will need to know what to look for.

    * till it's not :(

  • Kandy
    Kandy Member Posts: 1,461
    edited February 2017

    If the MRI does not go down the femur far enough then ask for it to be xrayed. Doing a hip MRI would typically get about half of the femur. If plain rims are normal ask for MRI of the femur. It is very possible to walk on it. I walked on mine for 3 months. Thanks for asking about me, I'm hanging in there. Finished my round of chemo, he doing 2 more rounds then he is going to scan to see where we are. So far it has been really tolerable. Wishing you the best.

  • Sue2009
    Sue2009 Member Posts: 228
    edited February 2017

    hi ladies, I am glad I came across this thread. Kandy, I was reading your last month thread about your progression. Your story sounds too much like my own. I did radiation last Oct thru Early Dec for bone mets to left hip & lower back. During treatment I had an episode of left femur pain that was over a 10. I was crying, took pain meds starting at 3 am, every hr with no relief. My mom was taking me to radiation, when I got to facility we got a W/c. RO thought I was having a flair. He put me on steroids, which helped. Fast forward to this past 2 weeks. My left femur & hip are giving me great pain again. I was sent to orthopedic oncologist cause MO said my last pet scan looked like I could fx my left leg just walking around. The ortho dr did plain x-rays & thought I was ok, pin not needed. Now leg pain is progressively gotten worse since I saw him. I have also been very depressed w/my progression. Had port put back in last week so can start new chemo treatment, Halaven, starting this week. Because of my pain & depression, I have spent too much time in bed. Now when I try to get up I become very short of breath, very quickly. I am so tired of all this, it has me wondering if it is time to call it quits. My initial goal when 1st dx'ed was live to see youngest son graduate HS. That happened last May. New goal is get to see grandchildren, which is not happening very soon. Lordy, I wrote more than I intended. Thanks Kandy for sharing your fx experience. I have felt certain something is being missed, I think I need to request an MRI. Su

  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited February 2017

    I had pain in my leg this summer, similar to what you are describing.... that started out like muscle pain but then progessively got worst. AFter a bone scan and xray, doc said it was cancer in the femur. LIke 7 cm??? I didn't believe it. Based on MY research, I think it was some sort of bone weakening or fracture casued by zometa. I FINALLY got my consult with a orthopedic oncologist and he agreed with me!! (I almost jumped up and HUGGED him)))! HA!

    I had a FEMUR stress fracture. Let me tell you, it got worse...It was hard to detect on normal scans, MRI barely show it. They even did a bone biopsy to prove it wasn't cancer. I ended up with a rod in my femur to stabilize it. Back to normal, but I am and will always be susceptible to breaks now.

    My strong advice is to get a referral to an orthopedic Oncologist. This is a KNOWN side effect from zometa. I also have had several fractures in foot.


    I put myself on cruches right away.... I didn't want to have a full break in the femur. Very painful. Being proactive on this is key. If it was cancer I wanted to radiate it right away. Be the Squeeky wheel. Call monday and demand a referral.


    message me if you have anymore questions. This issue hits close to home because I felt my main oncologist blew me off about it.



  • cliff
    cliff Member Posts: 290
    edited February 2017

    I too have an unexplained pain, I am on tamifloxin and exgiva after surgery for stage 4 breast cancer. I dont know if the side effects of exgiva are different for men, but every time I get a shot ( one per month), I have excruciating pain for a week. a couple of months I had my shot on a monday at 4 pm. went home and at 6 pm after a nap where I had a dream I was hit by a car and the left side of my body was crushed, I woke up with the pain still there.from base of ribs to toes, pain. nothing seemed to help. is this normal, or what? a different part of my body hurts after each shot. exgiva is supposed to help retain calcium in the bones of cancer patients, but why the pain?

  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited February 2017

    Cliff,

    I still have reactions to the bisphosphonates, like Xgeva. Not as bad as the first infusion, but still pretty harsh.

    Has your Doctor given you appropriate pain medication? If so, take it! It also helps to be absolutely sloshing with fluids the day before, day of, and day after your shot. It helps your kidneys process the stuff out of you faster.

    You might ask about moving off Xgeva and doing the infusion version, Zometa. My doc has kept me on it as it excretes faster than the Xgeva, so I have less duration of pain.

    Best of luck. These are great drugs for maintaining bone density, and seem to have some protective effect against the actual cancer, so it would be great if you could stay on them.

    Jennifer

  • cliff
    cliff Member Posts: 290
    edited February 2017

    no pain meds. the nurse said use ibuprofin, not much good there.

  • dlb823
    dlb823 Member Posts: 9,430
    edited February 2017

    Just seeing this now, Kay, and haven't read through everyone's responses. But I can share with you that I also had pain that sort of shot up my right leg and had me hobbling around on a cane. It started around the time I was dx'd w/mets and progressively worsened over almost 3 mos., until I ended up in the ER in absolutely excruciating pain, only to find out that I actually had pathologic fractures in my femur and pelvis that required a titanium rod in my femur and a total hip replacement. Since that time, I have suggested to several mets sisters who were experiencing leg pain to have their femur & pelvis checked with an MRI, to see if that's possibly what was going on, and each time it was. So it's not uncommon. Obviously I can't say for sure that's what's going on with you, but there's enough of a risk that you absolutely should ask for an MRI. In my case, the pain was not where the fractures were until it got so severe I couldn't move and was literally screaming and crying at the same time -- probably when the fractures totally gave way. But prior to that, it was just worsening pain in my shin, shooting up my leg, so I had no reason to suspect something was going on where it was. Hopefully, that's not what's going on, but the way your pain is presenting definitely raises the suspicion of a fracture.

    Please keep us posted! Hugs, Deanna

  • Heidihill
    Heidihill Member Posts: 5,476
    edited February 2017

    Kay, you could be just stepping off a curb and get a bisphosphonate induced subtrochanteric fracture, so best to head it off. Fitz' crutches are a good idea and seeing an OO.

    Cliff, you can ask them to lengthen the infusion drip time if you switch to Zometa as this also reduces side effects.

  • Sue2009
    Sue2009 Member Posts: 228
    edited February 2017

    Cliff, I went from Zometta to X-geva, for convenience , quick shot verses once waiting 2 hrs for zometta infusion. Back to zometta because it was better tolerated.

    Deanna, your experience sounds like mine , but I refused to go to the ER. When I text my family that I was having a hard time & was in great pain, my husband text me back saying I was a rock, & out of 6 grown children only 1 responded, my austistic son , w/"I love you mom" I called my husband after that, crying & yelling very loudly, "I am not a rock!!!" I laugh at it now, but my poor husband didn't know what to say. He finally asked if my son was there yet to pick me up, & I said yes, he just got here, but instead of coming in to get me, my 24 yr old son went across the street to play basketball. I had to hobble to the door to yell at him. One of the downfalls of having 5 sons, 1 daughter & a husband who don't like to talk about my cancer. Thank you BCO for giving me a place to vent & learn from others goingthru similar experience of Stage 4 BC.

  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited February 2017

    Cliff,

    You tell that nurse that you need more pain control. If he/she balks, keep moving your request up the line till you get what you need. There is no reason you should not have your pain controlled, dangit!


  • dlb823
    dlb823 Member Posts: 9,430
    edited February 2017

    cliff...Hadn't seen your comment last night...What you"re describing happened once to me -- the only time I asked to try the Xgeva shot in my tummy vs. the back of my upper arm. For some reason, the bone pain was much worse after getting it there, especially in my legs. So depending on where you get your shot, you might try an alternate injection site. Also, some patients use Claritin before and after their Xgeva shot to ease any bone pain.

  • kayrnic
    kayrnic Member Posts: 1,708
    edited February 2017

    update..... saw oncologist Wednesday. She said it could be a femur issue and sent me for x-rays. Nothing showed up. Now she thinks it's cancer and has ordered another MRI. She says we will just radiate if it's cancer. My bigger worry now is what if the MRI shows nothing? Then what? Pain is bad! I hate it! Mobility is suffering too! What other tests should I ask for? Thanks for all the replies

  • dlb823
    dlb823 Member Posts: 9,430
    edited February 2017

    X--rays don't always show everything. I wouldn't be surprised if the MRI reveals more, but be sure they do your entire pelvis, as well as the femur, in case the pain is referred. And keep in mind that readings can be a bit subjective. Depending on what the MRI report finds, a next step could be re-reading of both the MRI and recent PET by an ortho doc or second opinion radiologist.

  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited February 2017

    If the MRI doesn't show any metastatic activity, ask for a second read of your current imaging. A scrupulous second read by a radiologist who is familiar with your history, to chime in with dlb823.

    The problem with pain is that your Doc has to wait until it becomes "something" that can be identified. It sucks.

  • kayrnic
    kayrnic Member Posts: 1,708
    edited February 2017

    the first MRI a couple weeks ago was of my low back. Showed a couple small spots of cancer we already knew about, a small cyst, mild arthritis. Doc didn't think any of that would be causing pain. So this time, they are doing the hip and leg. My real fear is that if it's cancer we will have to consider it progression and I will be done with Ibrance/Faslodex. It's been pretty easy on me.

  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited February 2017

    My xray and bone scan showed an area..but it wasn't cancer. It truly can be a hairline fracture. it can be very painful!

  • kayrnic
    kayrnic Member Posts: 1,708
    edited February 2017

    fitztwins.....what did they do for it?

  • kayrnic
    kayrnic Member Posts: 1,708
    edited February 2017

    Update.....MRI of the leg was "unremarkable" Still no answers. She referred me to an orthopedist. I'm just so frustrated and have this nagging feeling that somewhere down the road, rather it be months or years, I'm gonna end up with a broken leg. :-(

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