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Bone and Joint pain a year or more later

Bone and Joint pain a year or more later

Posted by maggiemay on Jan 9, 2019 10:39 am

Hi Everyone.  My last  chemo was June 1 2017 and my last radiation was Sept 1, 2017  I still have terrible bone and joint pain
and my onc is saying this can't be from the chemo. It started on my 2nd to last treatment. I am looking for articles about this
type of pain lasting for more than a year. I have found lots of chatter about this but I need articles to show him and my GP

Re: Bone and Joint pain a year or more later

Posted by ACH2015 on Jan 9, 2019 11:00 am

maggie-may‍ 

Well this is right up my Allie. Research and evidence.

Read this article that includes the following, and I quote:

Types of late effects

Nearly any treatment can cause late effects, and these late effects are specific to the treatment you received. Below is a list of some of the more common late effects. Talk with your doctor about any concerns you have about a specific late effect.
 

Bone, joint, and soft tissue problems. Chemotherapy, steroid medications, or hormonal therapy may cause osteoporosis, which is thinning of the bones, or joint pain. Immunotherapy may cause problems in the joints or muscles, also known as rheumatological issues. Some people may have a higher risk of these conditions if they are not physically active.

Cancer survivors can lower their risk of osteoporosis in these ways:

  • Avoiding tobacco products

  • Eating foods rich in calcium and vitamin D

  • Becoming physically active

  • Limiting how much alcohol they drink.

    Like yourself, I have undergone chemotherapy, and believe my continued bone and joint pain is a direct result of systemic treatments. I also believe the symptoms to be partially related to my aging and the general wear and tear that comes with being involved in a lifetime of physical exertion and activity.

    As medical professionals, to deny that your condition is not related to your chemotherapy is not right. Some doctor's don't want to engage in the "what ifs and maybes" with us.

    Your pain and discomfort is as real as mine, and most likely related to past chemotherapy treatments as well.

    Follow the suggestions in the link to assist in keeping yourself as healthy as possible and overcome the lingering side effects. Its the best we can do for ourselves in moving forward.

    Keep well

    ACH2015 - Andy.

Re: Bone and Joint pain a year or more later

Posted by ACH2015 on Jan 9, 2019 5:12 pm

Hi maggiemay‍ 

Just so you get this tag, the response I gave was re your post was meant for you. When I tagged you, I just noticed it came up as maggie-may, another member here.

ACH2015 - Andy.

Re: Bone and Joint pain a year or more later

Posted by maggiemay on Jan 11, 2019 10:01 am

Thanks Andy   I printed it and left it with my doc

Kim

Re: Bone and Joint pain a year or more later

Posted by Birdwoman on Jan 21, 2019 11:17 am

HI Ironj‍ I am so sorry to hear about all the pain you are having. I am posting in this thread as others have also talked about bone and joint pain after treatment making some good points. Although my cancer is different from yours and my  situation is not as bad as yours, I am also worried as things keep getting worse instead of better.
I am so happy to hear of others regaining their strength after treatment and going back to the gym and running. I just want to go back to walking a few kilometers, but every month I am in more pain and walking less. I can't understand why as I am trying everything to get stronger. I do have a referral to a pain clinic so I will let you know the outcome if I ever get in. I am in Ontario, what province are you in?
Wishing you improvement and hoping you can find some relief!
 

Re: Bone and Joint pain a year or more later

Posted by ChrisMelanomaSurvivor on Jan 24, 2019 1:14 pm

Hi, I have gone through immunotherapy treatments (IPI and NIVO), had to stop a couple times due to it kicking my ass. But, brightside, it seems to have killed off tumors! But i'm commenting here because I too am having seriously bad joint pains (ankles, heels, knees, elbow, wrists, and spine) Its been about 3 months now since ive had any treatments. I also was taking dexamethasone for a long time, couldnt get off due to everytime dosing gets low, i vomit for days. eventually i got off all medications. but now such bad joint pains. just wanted to share my story about this. 

Re: Bone and Joint pain a year or more later

Posted by SpeedyStill on Feb 10, 2019 3:05 pm

My last chemotherapy treatment was May 2010.  My cancer was In an aggressive stage so the Doctor said he had to give me aggressive doses.  Now I am here to talk about it so that is a good thing.  After each treatment I was given a drug which makes your bone marrow make blood cells that were killed by the treatment.  It causes them to be produced at a extremely
​​​​fast rate because in a couple of weeks you have another treatment.  This goes on until your treatments are finished.  
I will not go into detail about the effects as I was going through the treatments however I have complained to Doctors ever since of bone, joint , nerve and muscle pain.  It is hard to get a straight answer however after a certain time  they say that they are not connected.
To this day the bottoms of my feet feel numb and the pawns of my hands are numb.
So yes there are long term side effects however it is our job to enjoy every day as much as we can. 
SpeedyStill 

Re: Bone and Joint pain a year or more later

Posted by Runner Girl on Feb 19, 2019 3:02 pm

I have noticed in the last few days (nights actually) that I'm having pain in my hips and legs.  Only at night, during the day, no issues.  It's enough to wake me and keep me from getting back to sleep.  Since this has only just started I have to wonder which of my treatments has caused this or a combination of all of them.  I had Docetaxal, radiation, continue to get Herceptin and of course I'm on Tamoxifen.  I'm having my check up with the Oncologist on Monday, February 25th so will inquire about this and see what he recommends, if anything.  I have taken calcium, magnesium and vitamin D supplements all thru my treatment as they recommended to try to keep my bones in good shape.

Re: Bone and Joint pain a year or more later

Posted by ACH2015 on Feb 19, 2019 4:30 pm

Runner Girl‍ 

Just a couple of weeks ago, I went through severe bone pain in both arms. It went on for about two weeks.  No real outstanding cause came to mind. I am not a champion weight lifter or trapeze artist, so I ruled those causes out. It reminded me oh so well of the chemotherapy bone pain I've had regularly since chemo from Sept. to Dec. of 2016.

The link below is from the CCS and talks about the many potential late and long term side effects of treatment. Let's not forget the biggie we all need to watch for - the aging process. Many of us forget to factor this one into the mix. 

http://www.cancer.ca/en/cancer-information/cancer-journey/life-after-cancer/late-and-long-term-effects-of-treatment/?region=bc

I admit I'm a little stiff and sore as I write this. 2 hours of shoveling snow off the roof will do that. But my sore arm bones recovered enough to do this, and I do feel better for the effort.

Slow and steady wins the race as they say. It's not how fast, it's the way we accomplish things that counts to keep us doing what we must or enjoy. Adaption increases and improves our resilience.

Keep well

ACH2015 - Andy.

Re: Bone and Joint pain a year or more later

Posted by Kims1961 on Feb 19, 2019 5:06 pm

Runner Girl‍  Good to discuss with your doctor for sure.  Initially I didn't think I was having any difficulties with Herceptin and Letrozole - all was going well until August - just after radiation was done.  I started to get nausea, dizzy spells and some bone/muscle pain. Because these side effects could also be just "ageing" or pushing myself too far - I tried to ignore them until it just became too difficult and I got very ill.

Although Herceptin tends to be very well tolerated - it can cause muscle/bone pain.  It seemed weird to me that i didn't have these issues until well into my treatments with Hercpetin - but it may have been the combination of the Letrozole.  In discussing this with my doctor, she said that your body has undergone so much in less than a year - that sometimes symptoms show up later or your body is still processing the "attack" it just got.  She took me off the Letrozole until I finish my Herceptin and this has helped somewhat.  I still get some muscle soreness and "tingling" in my legs at night, but much more manageable.

Let us know how it goes with your doctor.  How many more Herceptin treatments do you have?  Kim

Re: Bone and Joint pain a year or more later

Posted by Runner Girl on Feb 19, 2019 5:27 pm

Thanks ACH2015‍  and Kims1961‍ ,

Kim, I was somewhat taken aback to have pain now, particularly only in the middle of the night.  Radiation finished a month ago, chemo 3 months ago.  I went to the chiropractor last Thursday for an adjustment, in case it was my hips that were out of whack.  I'm on the 12 month (1 year) program with Herceptin, so that should go until the end of July - I've got a good amount of treatments left to go.  

Re: Bone and Joint pain a year or more later

Posted by Kims1961 on Feb 19, 2019 5:40 pm

Runner Girl‍   I was probably at the same place in treatment as you when I started to get some "flare ups".  Still not sure exactly what is/was the cause.  Glad you get a chance to speak to your doctor soon.  Does Tylenol or Advil  help?  Hope this improves.  Kim

Re: Bone and Joint pain a year or more later

Posted by Dtara on Feb 20, 2019 9:51 am

Runner Girl:
I have noticed in the last few days (nights actually) that I'm having pain in my hips and legs.  Only at night, during the day, no issues.  It's enough to wake me and keep me from getting back to sleep.  Since this has only just started I have to wonder which of my treatments has caused this or a combination of all of them.  I had Docetaxal, radiation, continue to get Herceptin and of course I'm on Tamoxifen.  I'm having my check up with the Oncologist on Monday, February 25th so will inquire about this and see what he recommends, if anything.  I have taken calcium, magnesium and vitamin D supplements all thru my treatment as they recommended to try to keep my bones in good shape.

 

Re: Bone and Joint pain a year or more later

Posted by Dtara on Feb 20, 2019 10:06 am

Hi Runner Girl, 

I too, have leg/bone pain. It started after 4th round of chemo. I'm suppose to have 6 rounds of chemo. At the 4th round, as planned, my chemo was to be changed to Herceptin and Docetaxal. About two days after my chemo...I started experiencing pain in my pelvis, legs and feet. It would wake me up in the middle of the night. It got to the point were I had to walk with a cane. My oncologist prescribed Percocet, this has helped but I would rather not be on this medication for the long haul. This side effect came as a shock to me....I never thought my legs would hurt so much. The pain actually made me cry. I hope it never gets that bad for you. I wish you well.

Re: Bone and Joint pain a year or more later

Posted by Essjay on Feb 21, 2019 9:58 am

I’m on my first cycle of Paclitaxel (another taxane), and I was warned about joint pain. Days 4-7 were intense, and over the long weekend, and I was home alone for the weekend - I didn’t know what to do with myself, got no sleep, little rest, and was generally miserable and wondering how I would cope with 4 cycles of this. The clinic had told me that I could get a prescription for narcotics, but like you I am not keen for the long haul, and I’m limited in what I can take due to an allergy to codeine. I have however spoken to the psychologist about mindfulness and she’s offered me some coaching, and recommended an app called Mindfulness Coach by Veterans Affairs. I’m going through the training just now and I’m hoping it will help (my sister vouches for this approach after being left with chronic pain after a tree fell on her breaking vertebrae four years ago). My pain is moderate now, and I’m hoping it will ease up before my next cycle. It’s a little distressing to hear that the pain can last beyond chemo, but hopefully by then I can up my exercIse which I have found to be very Effective for pain management (endorphins are our natural painkillers)!

Re: Bone and Joint pain a year or more later

Posted by Dtara on Feb 23, 2019 12:23 pm

Hi Essjay‍ 

I hope your pain has subsided. I too found it distressing to hear that the joint pain could last beyond treatment. But it's also strange how alot of doctor's are denying that it has anything to do with the chemo treatments. It is obvious, from all that is said here that it's just not the case. This is something that doctor's need to address. We fight so hard to live and get through all these treatments that we need our concerns heard. I admire how positive you are, I've been finding it hard to stay positive. I was an avid walker, but now walking 30 feet is painful and tiring. I'm going to down load the app you suggested, I will let you know how it goes. Thank you and I wish you well.

Re: Bone and Joint pain a year or more later

Posted by Kims1961 on Feb 23, 2019 5:02 pm

Dtara‍   Sorry to hear of your pain.  Much like you I found the Docetaxel rounds very painful. I was given percocets and they seemed to be the only thing that touched the pain.  I mentioned to my oncologist  my distress and we came up with a plan that I would start taking the pain meds the day of treatment so that by day 3/4 when the pain kicked in, I wasn't chasing the pain but rather on top of it.  She also was able to reduce my dosage of docetaxal which really helped.

I hope today is a much better day.  Kim

Re: Bone and Joint pain a year or more later

Posted by Runner Girl on Feb 25, 2019 1:39 pm

I saw my oncologist's stunt double today, he was no where to be seen.  She's a nice enough lady, but she's not my "doctor".  Anyways I reported the night time leg pain, which ended up getting me a thorough going over and an appointment for an ultrasound.  She is concerned because Tamoxifen can cause blood clots.  So in the next short while I'll go for the ultrasound and find out if I now have a clot problem.  Good Grief!

Re: Bone and Joint pain a year or more later

Posted by Runner Girl on Feb 25, 2019 9:20 pm

Just to update, I'll be having the ultrasound on my leg tomorrow afternoon.

Re: Bone and Joint pain a year or more later

Posted by Lianne_adminCCS on Feb 25, 2019 9:29 pm

Runner Girl‍ 
Glad you are being looked after quickly.
Keep us posted

Lianne

Re: Bone and Joint pain a year or more later

Posted by Brighty on Feb 25, 2019 9:31 pm

Runner Girl‍  please up date us tomorrow! !

Re: Bone and Joint pain a year or more later

Posted by Essjay on Feb 26, 2019 9:34 am

Runner Girl‍ Hope the ultrasound is all clear. With all your running, I should think you have healthy veins 🤞🏻

Re: Bone and Joint pain a year or more later

Posted by Runner Girl on Feb 27, 2019 9:49 am

The ultrasound technician gave me the "OK" hand signal, telling me that I do not have a blood clot in my leg.  Yippee!!!  Which means my leg pain is likely muscle related.  I found a US breast cancer website that had a write up about muscle pain.  All of my treatments are listed as potentially causing muscle pain.  I am relieved to not have a clot problem.

The following breast cancer treatments may cause muscle pain:
  • chemotherapy:
    • Abraxane (chemical name: albumin-bound or nab-paclitaxel)
    • Ixempra (chemical name: ixabepilone)
    • Taxotere (chemical name: docetaxel)
    • vincristine (brand names: Oncovin, Vincasar PES, Vincrex)
  • radiation therapy
  • hormonal therapy:
    • Arimidex (chemical name: anastrozole)
    • Aromasin (chemical name: exemestane)
    • Evista (chemical name: raloxifene)
    • Fareston (chemical name: toremifene)
    • Faslodex (chemical name: fulvestrant)
    • Femara (chemical name: letrozole)
    • tamoxifen
  • targeted therapy:
    • Herceptin (chemical name: trastuzumab)
    • Kadcyla (chemical name: T-DM1 or ado-trastuzumab emtansine)

Re: Bone and Joint pain a year or more later

Posted by Brighty on Feb 27, 2019 9:54 am

Runner Girl‍  glad to hear it's not a blood clot!!!!!

Re: Bone and Joint pain a year or more later

Posted by luvcurling on Feb 27, 2019 9:59 am

What an immense relief! Thank you for posting the results today.

Also thanks for the information regarding treatments that are related to the possible cause.

Have a great day!
C.