Chronic pain following Chemotherapy and Radiotherapy

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sue_16
sue_16 Member Posts: 1
I finished my second course of chemotherapy, following a 6 week course of radiotherapy at the end of December 2011. A few weeks later I started to feel pain in my neck, shoulder
(the same side as my breast cancer), then pains in both my knees, elbows, ankles, fingers and toes. My worst pain is in my neck and shoulders and my right wrist. The pain is so severe, that it prevents me sleeping at night.

My G.P. seemed to think I was strange to complain of pain in my ankles?

I have been referred to a Rheumatologist, who said I had Osteo Arthritis, but only recommended that I take Ibruprofen. Follwing a brain Haemmorhage in 2009 I was advised not to take this medication.

The pain I go through at night is excrutiating, can anyone help?

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  • mamolady
    mamolady Member Posts: 796 Member
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    Sue,
    You should talk to the

    Sue,
    You should talk to the doctor you trust the most. They should be able to help you find something to alleviate the pain with out causing more health issues. Physical therapy may also be helpful. It may take a bit to find what works though.

    Are you taking arimadex or tomaxafin? That may be causing the joint pain.
    Don't give up trying to get relief though. You should not be expected to live in constant pain.
    Keep us posted,
    Cindy
  • MAJW
    MAJW Member Posts: 2,510 Member
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    mamolady said:

    Sue,
    You should talk to the

    Sue,
    You should talk to the doctor you trust the most. They should be able to help you find something to alleviate the pain with out causing more health issues. Physical therapy may also be helpful. It may take a bit to find what works though.

    Are you taking arimadex or tomaxafin? That may be causing the joint pain.
    Don't give up trying to get relief though. You should not be expected to live in constant pain.
    Keep us posted,
    Cindy

    Perhaps...
    Perhaps your pain is caused by nerve pain, neuropathy....I had it really bad in my breast, caused from radiation (cancer breast..even radiated to my right shoulder and down the back of my arm..it was like someone pored gasoline on me and set me on fire...I actually cried one day it was so bad...I had an appointment with my GP unrelated to my bc...we've gone to him for 26 years...I told him about the severe pain I was having...he was really upset that my onc and radiation onc hadn't addressed this even though I brought it to their attention on more than a few visits...I thought I was going to have to live with it, although I didn't see how....he prescribed Gabapentin...it totally changed my life! It took about a week for it to work...my breast pain was gone...it did take about a month for the arm and shoulder pain to disappear...I am totally pain free, even though I am stageIV...It has made all the difference...it maybe worth asking for a script for it..But....as someone said if you are taking tamoxifen or one of the other estrogen blockers that could be the cause of your pain...

    I feel so bad for you...pain is so debilitating..
    Wishing you better days,
    Hugs, Nancy
  • Nana C.
    Nana C. Member Posts: 108
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    I am so sorry you are in so much pain
    Dear Sue,
    Your pain sounds exactly like what I used to have to deal with also. The difference is that my onco was awesome. He thought I had neropathy from the chemo, but could not understand the neck and shoulder issues. He prescribed Gabapentin for me. It was very helpful for the pain I had in my feet and hands. It did not do anything for my neck, was prescribed perocet. Once I was finished with teatment, I was on a clinical trial, so I had chemo for a year, 6 bad treatment taxotere and another one and Avastin. Only the avastin lasted for the whole year. He then sent me to a pain doctor. I feel like my Onco saved my life and my pain doctor makes it possible to live my like. On my first visit I told him about the neck pain which went all the down my arm and right away he new it was a disc, even told the numbers he thought it was, sent me for and MRI. I had to bulgings disc, As weird as it may sould I was jumping for joy over bulging discs! I was so happy it was not cancer and I had proof it was real pain, My onco never doubted it, but I still felt like I was a complainer and didn't like that feeling. My pain doctor gave me an Epidural Steriod injection and the next day I felt like a new woman! I now get the shot every 4 months, hopefully that will continue to be longer in between shots. On the last visit I asked him if he could work his majic on my knees. He gave me a shot in each knee, in an hour I could actually bend over without someone helping me up. I still take perocet on ocassion, but I can say that I have my life back. I do not know how you could deal with all that and no pain medicine. I used to have to roll out of bed. Please ask your doctor about a Pain doctor, mine is wonderful! I will be praying for you, chronic pain is no way to live without support from your doctor. I thank God everyday for my good fortune, I was blessed with wonderful doctors. Keep looking for a docor that will help you. Sorry this is so long, hope it helps.

    Prays
    Nana C.

    PS My ankles hurt too! I believe that is from the Tamoxifin.
  • jnl
    jnl Member Posts: 3,869 Member
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    mamolady said:

    Sue,
    You should talk to the

    Sue,
    You should talk to the doctor you trust the most. They should be able to help you find something to alleviate the pain with out causing more health issues. Physical therapy may also be helpful. It may take a bit to find what works though.

    Are you taking arimadex or tomaxafin? That may be causing the joint pain.
    Don't give up trying to get relief though. You should not be expected to live in constant pain.
    Keep us posted,
    Cindy

    Talk to your oncologist
    Talk to your oncologist about this pain. You shouldn't be having to go through this. It might be the result of something you are on now like hormone therapy.

    Best of luck and keep us updated,

    Leeza
  • New Flower
    New Flower Member Posts: 4,294
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    Physical therapy and acupunture
    Pleasd keep searching for answers. You need to find the origin of you pain
    Physical therapy and acupuncture did help me.
  • DebbyM
    DebbyM Member Posts: 3,289 Member
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    Nana C. said:

    I am so sorry you are in so much pain
    Dear Sue,
    Your pain sounds exactly like what I used to have to deal with also. The difference is that my onco was awesome. He thought I had neropathy from the chemo, but could not understand the neck and shoulder issues. He prescribed Gabapentin for me. It was very helpful for the pain I had in my feet and hands. It did not do anything for my neck, was prescribed perocet. Once I was finished with teatment, I was on a clinical trial, so I had chemo for a year, 6 bad treatment taxotere and another one and Avastin. Only the avastin lasted for the whole year. He then sent me to a pain doctor. I feel like my Onco saved my life and my pain doctor makes it possible to live my like. On my first visit I told him about the neck pain which went all the down my arm and right away he new it was a disc, even told the numbers he thought it was, sent me for and MRI. I had to bulgings disc, As weird as it may sould I was jumping for joy over bulging discs! I was so happy it was not cancer and I had proof it was real pain, My onco never doubted it, but I still felt like I was a complainer and didn't like that feeling. My pain doctor gave me an Epidural Steriod injection and the next day I felt like a new woman! I now get the shot every 4 months, hopefully that will continue to be longer in between shots. On the last visit I asked him if he could work his majic on my knees. He gave me a shot in each knee, in an hour I could actually bend over without someone helping me up. I still take perocet on ocassion, but I can say that I have my life back. I do not know how you could deal with all that and no pain medicine. I used to have to roll out of bed. Please ask your doctor about a Pain doctor, mine is wonderful! I will be praying for you, chronic pain is no way to live without support from your doctor. I thank God everyday for my good fortune, I was blessed with wonderful doctors. Keep looking for a docor that will help you. Sorry this is so long, hope it helps.

    Prays
    Nana C.

    PS My ankles hurt too! I believe that is from the Tamoxifin.

    Just checking Sue to see if
    Just checking Sue to see if you'd talked to your doctor about this pain and if he could help. Update us when you can.


    Hugs, Debby
  • weazer
    weazer Member Posts: 440
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    DebbyM said:

    Just checking Sue to see if
    Just checking Sue to see if you'd talked to your doctor about this pain and if he could help. Update us when you can.


    Hugs, Debby

    Hmmmm Pain
    Sue, I have pain 75% of the time.
    Last week I went to my PCP and told her that I can not take the pain in my neck and shoulder and arm any longer, I have been dealing with it and my right wrist and my right hip sense treatment.(2009) I ask myself is this my new normal?
    As far as I can tell it is!
    Doc gave me a shot in my arm of Trumadol and that helped ease the pain so I'm not in tears anymore, I take Flexaril, but the pain is still present, not as painful though.
    My wrist flaires up every now and then where I cant even wipe my on butt:{ stays like that for days then goes away as if it was never there, VERY strange Docs have'nt a clue.
    My hip bothers me every day, so I see my Onc on the 26th and I will mention it to him and see what he thinks we should do.
    Sue I hope you find relief soon, pain totally takes ahold of your life!
    Lots of Hugs Karie
  • Megan M
    Megan M Member Posts: 3,000
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    mamolady said:

    Sue,
    You should talk to the

    Sue,
    You should talk to the doctor you trust the most. They should be able to help you find something to alleviate the pain with out causing more health issues. Physical therapy may also be helpful. It may take a bit to find what works though.

    Are you taking arimadex or tomaxafin? That may be causing the joint pain.
    Don't give up trying to get relief though. You should not be expected to live in constant pain.
    Keep us posted,
    Cindy

    I am in agreement with the
    I am in agreement with the pink sisters that you have to talk to your oncologist about this. If he can't help you, I hope he will send you to another specialist that can give you relief.

    Keep us updated,

    Megan
  • Rague
    Rague Member Posts: 3,653 Member
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    I've had arthritis in my
    I've had arthritis in my upper back for years (first showed on an x-ray) that never bothered me. A while after TX I started having pain in the area so PA ordered a new Bone Scan to be sure it was 'just' the arthritis - it is. She put me on Etodolac (anti-inflammatory and pain med) and taking it every morning keeps me pain free unless I overdo it (which I do sometimes) then I take a second one at night for a few days. When I over do something and need something to quiet it down OTC Tylenol will not help so have to take a Vicodin. Since the first of June have had to twice - did a 10k Volksmarch up to Crazy Horse Memorial and mowed 2+ acres of weeds with a push mower
    earlier this week.

    Are you working with a PT? Pain can be caused by not moving muscles/joints. After my last CT, I developed a lot of pain in my upper non-surgery arm. Saw Ortho guy and straight to PT. It worked great - because it hurt I wasn't working it as much as sho8uld have. Once I started doing what PT gave me to do daily it was rapidly better.

    How is your Potassium level? Since 1/2 way through Taxol I have to take a lot of Potassium to keep in the normal range. When it falls below I will have pain/cramps in feet ankles at night. A K pill will relieve (for me) within a 1/2 hr.

    Depending on where your arthritis is have you talked to someone about a TENS Unit? They can be great for some and do nothing for others.

    Don't know if any of what has helped me will help you - but can't hurt to ask about.

    Winyan - The Power Within

    Susan