Constant leg and back pain after chemo

jujubee83
jujubee83 Member Posts: 30
edited December 2014 in Pain

I think I'm going crazy. I finished my chemo regimen 6/18/14. I had 4 rounds of AC and 12 of Taxol. During the AC I did get pain from the neulasta shot, but that went away. When I was on Taxol the bone pain became excruciating. I was taking norco and gabapentin to help with the pain. Months after chemo, I'm still having the pain. MO says that the chemo is out of my system and I should be feeling better. That's where I think I'm going crazy. I'm not imagining the pain. It's real and it's debilitating. They just keep prescribing pain meds and I finally got in to a physical therapist. So I'm hoping that will help. Scans have been done to make sure it's not mets. Has anyone else experienced this? I don't see a lot of information on pain this long after chemo. It wakes me up, I can't walk around the block, and stairs aren't even an option. 

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  • jenjenl
    jenjenl Member Posts: 948
    edited October 2014

    me, I'm over a year out from chemo and still have ongoing back pain. I went to a chiropractor and he notice one hip is higher than the other.  Overall i don't have an answer but your not alone.

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  • Moderators
    Moderators Member Posts: 25,912
    edited October 2014

    Hi Juju,

    We're sure there will be some very helpful answers here shortly from our awesome community, in addition to jenjenl's post, but we wanted to point out some links that could be informative from the main Breastcancer.org site:

    We hope this helps!

    --The Mods

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  • jujubee83
    jujubee83 Member Posts: 30
    edited October 2014

    Thank you. It really helps to know I'm not the only one

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  • Momine
    Momine Member Posts: 7,859
    edited October 2014

    Juju, it may well be inflammation. I had this after taxotere, and it went on for quite a long time.

    What I did was eat a lot of anti-inflammatory foods: greens, sardines, chilis etc. 

    I also took a small dose of an anti-inflammatory (ibuprofen) before bedtime.

    Then I tried to move every day, even if it was hard. 

    It did eventually go away, so don't lose hope.

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  • Fiercer
    Fiercer Member Posts: 45
    edited October 2014

    I'm 50, active and have constant bone pain, in my toes, feet and ankles mostly. My onc told me only a few percent of us have this ongoing pain. I've had scans for everything, even saw a rhumetologist. He ruled out gout and rheumatoid arthritis. 

    My shoulder in the radiated side blew out and I had surgery for that as well.  The thought was the rads may have spurred that along.

    Where does this leave me? I keep trying to figure it out, but in the end when I want to stand for hours or pretend I'm normal, I need pain killers.

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  • jennywong88
    jennywong88 Member Posts: 10
    edited October 2014

    Hi Juju, I had back and leg pain during chemo and after chemo. It took about 2 years plus for the pain to subside. Keep doing exercise eventually u feel better. Tell yourself to be patient and things will get better as time goes by.

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  • jujubee83
    jujubee83 Member Posts: 30
    edited October 2014

    Momime: It does sorta feel like inflammation or (how I think) arthritis would feel. This week I'll try adding some of the suggested foods and see how that helps. 

    Idawson: I know what you mean about wanting to feel normal. If I know we're gonna taje the kids somewhere that has a lot if walking, I can't leave the house without pain killers. It's ridiculous that I can't even walk them to school. My onc has officially labeled the pain due to neuropathy.  So I had been researching that a lot more. Do your toes hurt, hurt then go numb or just numb? Mine just go numb when I'm doing a lot.

    Jennywong: thanks. That makes me feel better. I've been pushing little by little to exercise, thinking my bones just need to be waken up. 

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  • Fiercer
    Fiercer Member Posts: 45
    edited November 2014

    jujube- it starts out like a twinge of pain then tingling. I had taken Nuerontin for a while and it made it worse. It dulled the pain, I did more damage. Now I have to take my shoes off and massage my toes frequently. Standing or sitting, it's miserable. They go numb a lot. That's my left toes. My right big toe is another story. Finally told my dr after all the rests we have done. I'm done. He gives me Percocet to manage the pain. I always feel it.

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  • jujubee83
    jujubee83 Member Posts: 30
    edited November 2014

    MO has prescribed the same. I take 1 percocet every six hours daily. It controls the pain wit hour that crazy loopy feeling. Don't wanna be on pain meds forever though.

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  • KatiAK
    KatiAK Member Posts: 138
    edited November 2014

    I had a lot of pain while on Taxol and halfway thru radiation my thoracic spine started hurting unbearably. My fingers, toes and legs hurt but it's my back I have the most trouble with and I often feel like I have a kink in my neck. I had a bone scan done (no Mets - whew) but I don't like having to take pain meds either. I do exercise everyday and it does help a lot but I'm still constantly reaching for something for pain.

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  • LydiaHouse
    LydiaHouse Member Posts: 11
    edited November 2014

    I also had a lot of leg pain and some ba k pain. I needed a LOT of massage, chiropractic and acupunture. Im finally over most of it, but I still need heat and my husbanda massage of my legs to get to sleep some nights. Its much much better for me now though . I finished chemo in june.

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  • Chrissy26
    Chrissy26 Member Posts: 32
    edited November 2014

    I finished chemo in sept. I have excruciating pain in my knees and hips and shoulders. I also take Percocet on a regular basis just to keep going. I can only manage stairs on a good day. I thought I was the only one. My MO said bone pain this long after taxol is uncommon. But clearly it is not based on what I am reading here. I have also added I ibuprofen tablet twice a day. Not sure if that is helping but I will try anything. I try to walk around the block when I can but now with the snow, I will not risk a fall and possible fracture. I look forward to the day that I wake up pain free and can get on with a more active lifestyle.

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  • jujubee83
    jujubee83 Member Posts: 30
    edited November 2014

    My MO said the same thing...that it's uncommon to have pain this far out. And for a while I started thinking it was in my head, but it's not. Every morning I wake up and I feel like an ol lady with arthritis (or what I think arthritis would feel like). I feel an aching throbbing from my lower back through my knees and down to my ankles. And now that it's cold, it's seems like it's getting worse.

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  • GrammyR
    GrammyR Member Posts: 702
    edited November 2014

    Are you taking hormone blockers.They caused me so much knee and hip pain I stopped after 18 months and it cleared after 2 weeks off.Do you have neuropathy ? Taxol caused permanent neuropathy(still have after 8 years) but I manage w/out heavy pain meds now.So sorry about your pain. Keep on bugging them to get to the bottom of this.Big hug.




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  • slv58
    slv58 Member Posts: 1,216
    edited November 2014

    I'm another one left with debilitating pain from waist down, (I'm 1 1/2 years PFC I see a rheumatologist because my MO doesn't think it's her job. Basically my rheumatologist said it was from chemo and has given me every blood test possible. I guess the good news is that it isn't rheumatoid arthritis. I hate popping Tylenol (I can't take Advil) every day, but I'm so tired of the pain. I find it very hard to get out of the car after driving-I have to give myself a pep talk because of the anticipated pain. Night time is also very hard as my legs have a deep ache that keeps me awake. I can manage the neuropathy in my toes (and a bit in my hands) but it's the deep aching that is so hard. I can't even pin point if it's bone or muscle but is very reminiscent of the pain I experienced on docetaxol. I'm happy to not feel alone with this, but sorry we are all experiencing this "uncommon" (?) SE

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  • Chrissy26
    Chrissy26 Member Posts: 32
    edited November 2014

    grammyR. I am triple neg so no, no hormone blockers.

    Slv58. You made me snicker. It amazes me how many times I hear the same thing from my MO. "Oh, you'll have to speak to your family physician about that". I understand if it really is a GP responsibility like blood pressure pills or something like that but some of the most minor questions receive that statement. It is so annoying.

    I had a bone scan last Wed just to rule out mets, results I will receive next week. I know we are supposed to keep active but I can hardly make it out of bed some days. I was in tears this morning and had to call hubby to help me. Not sure how to get active. Saw the doc (GP) today and she suggested walking around the house and increasing the number of times each day, same with the stairs. I am going to give it a whirl. I will try anything. Finger walking on the walls is supposed to be good for my shoulders. I am also going to try acupuncture. My MO did not want me to have any acu or chiro during treatment and to wait six weeks post chemo. So I can start that now. Has anyone else had success with that?

    Nice to hear that I am not the only one struggling with taxol side effects. It sure would be nice if none of us had to deal with these issues.

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  • MzzHope
    MzzHope Member Posts: 49
    edited November 2014

    I am 6 years post chemo and I still have leg and back pain.It is the same pain i experienced from the morning after my second taxol treatment.(But I am also thinking the Femara I am currently taking does not help.)I could not function without pain meds,which i built up a tolerance to over time.My oncologist had me taper off them.Currently the pain is worse than ever.I have an appointment for accupunture next week.Hope that helps!

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  • Fiercer
    Fiercer Member Posts: 45
    edited December 2014

    My MO said the same, 'uncommon'... I do see my internal medicine Dr along with a RA Dr. I don't have RA, just this deep bone pain, like I had during Chemo. I thought the pain back then was from the nuelasta injections. This pain is maddening! Especially when your Dr. thinks it can't be because it's uncommon.

    I can be walking, sitting, or just sleeping and it can quickly become intense. At this point, I am okay with undiagnosed pain from Chemo, but I am done with experimenting with unproven drugs that do more harm than good. Percocet does not stop the pain, but it makes me less irritable when the flares start up.


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  • gatorgal89
    gatorgal89 Member Posts: 56
    edited December 2014

    I'm really glad I found this thread. Most days I think I'm going crazy, but when I see so many others PFC with the same complaints...there's got to be something to that! I have seen a neurologist for my neuropathy, but I have neck pain and now back pain that seems to get worse. I saw a neurosurgeon last week because I have cervical spine damage from chemo. He did some testing where he was poking me with a pin and I basically felt nothing on my upper body. He has ordered a brain MRI and spine MRI. I just want to feel like my old self. I finished chemo in May and feel as though I am getting worse instead of better. I wish someone would just come out and say it's because of the chemo and it IS common to experience what we're experiencing. Seems to me it would save a lot of guess work! Thanks for letting me vent.

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  • GrammyR
    GrammyR Member Posts: 702
    edited December 2014

    gatorgal89- sad to have to say this but most of our lives never go back to normal. Though suggested mine was from Taxol. Multiple other potential diagnosis came from different neurologists. MS being one. Heavy metal toxicity. B12 deficiency. None could be proved. All I know before BC I was fine and at 58 working full time.By 60 I was in leg braces. So I urge to get multiple opinions.Living on pain pills has its own set of issues Hugs coming to all of you.


    Rene

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  • slv58
    slv58 Member Posts: 1,216
    edited December 2014

    Well I saw my rheumatologist yesterday and he had to give me (I was practically crying) another intramuscular prednisone shot. Already I feel much relief from pain. He says it's more than likely inflamatory arthritis from chemo and has run blood tests again to rule out RA and to check for signs of inflammation in blood. The last time I had a shot was March and now realize I should have gone in sooner to see him instead of letting the pain build up so much. I went from taking 3-4 extended tylenols a week to 4-5 a day. I keep hoping that the pain will diminish with time but reality has set in that this will probably be a lifelong SE. I am grateful that I am NED but must admit that I'm getting a little depressed at the quality of life I'm left with. I'm constantly fatigued because sleeping is so difficult (just turning in bed wakes me up completely because of the effort/pain it causes). I'm so much more emotional -as if I was PMSing and I'm sure that's because I'm in pain all the time but trying to soldier through. I hope no one is left with this SE and if they are, hopefully they can find relief and support. My MO says that the chemo is long gone from my body but I know that it has left me with quite a few SE-short term memory is shot, pain in bones and muscles, problems with my eyes, thyroid problems but NO CANCER!

    I am very grateful to know I'm not alone, the support means a lot when no one wants to acknowledge. I find family and friends have a hard time understanding because as far as they are concerned 'I beat cancer'. I hope so. Hugs to all for a very happy holiday season

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  • GrammyR
    GrammyR Member Posts: 702
    edited December 2014

    sly58- Praying that your pain eases up real soon.I had those symptoms too when I was on hormone blockers. I finally went off them and it eased a lot. SE from Taxol stayed w/me though. My athritis doctor told me to take Alpha-Lipoec -Acid supplements and took them for over two years which helped.Taking too much Tylenol can give you liver failure so be careful w/it. I also found that getting in the pool eased it too. (Lived in Florida then) Sometimes PT can authorize hydro-therapy which is done on a pool. Just a thought. God Bless and big hugs.

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  • slv58
    slv58 Member Posts: 1,216
    edited December 2014

    Thank you GrammyR, I will look into alpha-lipoec acid, I have to be very careful not to take anything that could thin the blood. I hate taking Tylenol but was assured that problems arise if taking more than recommended dose but just to be safe I am having complete liver panels done every 6 months.

    Already my prednisone shot has alleviated almost all of the pain but I hate relying on this because of it's own set of problems. Seems like I have to accept some medication risks because the quality of life in constant pain is hard. It's frustrating that my MO doesn't believe this is chemo induced, even though all my problems started with docetaxol. I still would have done tx and the same dose, but validation of this possible SE would be nice.

    Hope everyone who celebrates had a wonderful Christmas surrounded by the love and support of family and friends!


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  • SweetHope
    SweetHope Member Posts: 439
    edited December 2014

    Pineapple, especially the core, is excellent for inflammation. I blend it in a smoothie or just eat it.

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  • slv58
    slv58 Member Posts: 1,216
    edited December 2014

    SweetHope thank you, just looked it up and unfortunately, bromelain- the anti inflamatory in pineapple may also induce bleeding :-( so I can't try this. I appreciate the suggestion though!

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