16 rounds of chemo having joint pain through the entire body/looking for someone else who has done t

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Yvette39
Yvette39 Member Posts: 17
edited March 2014 in Breast Cancer #1
I'm looking for another breast cancer patient who has done 16 rounds of chemotherapy. I have had 4 adriamycin/cytoxin and 12 rounds of taxol. I'm currently doing 1 year of herceptin due to her2 positive.

What I'm wanting to know is I finished my chemotherapy in April 2010. I feel like every single joint and bendable part of my body has arthritis in it. I have seen the physicians for this and have been tested for rheumatoid arthritis which was negative. I really just don't feel good anymore. I feel like the poison from the chemotherapy is coming out of my body through my joints. Really it is hard to explain but I'm sure there are others out there who know what I'm saying. I do have fibromyalgia so this has hit my body double hard.

Hope to hear from someone out there who knows where I'm coming from. Any suggestions?

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  • faith_trust_and_a_little_bit_of_chemotherapy
    faith_trust_and_a_little_bit_of_chemotherapy Member Posts: 319 Member
    #2
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    Pain and discomfort, but not that much chemo
    I know exactly what you mean about the poison in you body...

    I finished my course of chemo on 6/18 and still ache in my joints and I understand the neuropathy in my feet may last awhile. And of course, I think every ache, pain, twinge is something I have been trying to kill in this body for the last 6 months! Despite it all, I know I need to keep moving. There was a time after chemo when it felt as though instead of 'chemo brain' I was experiencing 'chemo limbs'...I was upright but they just didn't want to support me much less propel me across the room.

    I am on no prescription medications for this inconvenience, I am considering switching to ibuprofen from acetaminophen.
  • grandmasueb
    grandmasueb Member Posts: 49
    #3
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    I have the same rounds as
    I have the same rounds as well, I am on round 5 of 12 of taxol. My feet were going numb and my onc reduced the taxol by 20% and now doing 3 weeks of treatment then 1 week off to rest. He said this is so I dont get permenate nerve damage. He also gave me ultram for the joint pain which really helps alot. This is a prescription but a non narcotic drug which I did not want any narcotic drugs. So see if your onc can prescribe you the ultram it works wonders.
  • Rague
    Rague Member Posts: 3,653 Member
    #4
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    A/C and Taxol
    I too had 4 A/C starting last Aug 25 and 12 Taxol ening Jan 28. (No Herceptin for me.) Pain has not been an issue for me except in my back between my shoulders. Actually it was during rads that it got worse. I've had arthritis in the area for years but it's been years since it bothered me. My PA wanted to be sure that it was just the arthritis and not 'something' else going on so had another bone scan done about 2 months after the last rad and it is just the arthritis getting worse. So back to using my TENS unit a lot - I'd rather use it than pop pills when I can.

    I had problems keeping potassium levels up during Taxol. Taking the potassium pill just before bed instead of in the morning helped to keep down the cramping in my ankles at night.

    I was DX'd with fibro back in '98 and had problems with it for about 4 years and then it 'left' as abruptly as it had appeared.
  • Kat11
    Kat11 Member Posts: 1,931 Member
    #5
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    Rague said:

    A/C and Taxol
    I too had 4 A/C starting last Aug 25 and 12 Taxol ening Jan 28. (No Herceptin for me.) Pain has not been an issue for me except in my back between my shoulders. Actually it was during rads that it got worse. I've had arthritis in the area for years but it's been years since it bothered me. My PA wanted to be sure that it was just the arthritis and not 'something' else going on so had another bone scan done about 2 months after the last rad and it is just the arthritis getting worse. So back to using my TENS unit a lot - I'd rather use it than pop pills when I can.

    I had problems keeping potassium levels up during Taxol. Taking the potassium pill just before bed instead of in the morning helped to keep down the cramping in my ankles at night.

    I was DX'd with fibro back in '98 and had problems with it for about 4 years and then it 'left' as abruptly as it had appeared.

    I had the same treatment as
    I had the same treatment as you,and I am Her 2 pos. I finished Chemo in November and am continuing with the Herceptin until September and then I am done. I also did 34 treatments of rads. I took pain meds for the joint when I had it, mostly at night.Hang in there, you will get through it. Hugs
  • creampuff91344
    creampuff91344 Member Posts: 988
    #6
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    Kat11 said:

    I had the same treatment as
    I had the same treatment as you,and I am Her 2 pos. I finished Chemo in November and am continuing with the Herceptin until September and then I am done. I also did 34 treatments of rads. I took pain meds for the joint when I had it, mostly at night.Hang in there, you will get through it. Hugs

    Some Relief
    Yvette, your situation sounds so familiar, as I also have problems with pain in my joints from the chemotheraphy I had to undergo for b/c treatment. A friend of mine came up with a "miracle" for me. She bought some very soft material (I think it is a thick flannel), cut out two squares about 15 inches square, and sewed them together, leaving a small opening at one corner. Then she turned it inside out, and filled the square with field corn (the kind used to feed deer, chickens, etc.) Of course, she then sewed the corner shut. I put this in the microwave for three minutes, and use it on the spot that hurts the most (mainly my back). The heat relieves the pain, and also the corn being heated forms a small amount of moisture that lets the heat penetrate the skin. This simple bag has given me hours of relief. In the winter time, I take this to bed with me to get me started to a good night's sleep. Hope this is helpful. Hugs, Judy
  • Yvette39
    Yvette39 Member Posts: 17
    #7
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    creampuff91344 said:

    Some Relief
    Yvette, your situation sounds so familiar, as I also have problems with pain in my joints from the chemotheraphy I had to undergo for b/c treatment. A friend of mine came up with a "miracle" for me. She bought some very soft material (I think it is a thick flannel), cut out two squares about 15 inches square, and sewed them together, leaving a small opening at one corner. Then she turned it inside out, and filled the square with field corn (the kind used to feed deer, chickens, etc.) Of course, she then sewed the corner shut. I put this in the microwave for three minutes, and use it on the spot that hurts the most (mainly my back). The heat relieves the pain, and also the corn being heated forms a small amount of moisture that lets the heat penetrate the skin. This simple bag has given me hours of relief. In the winter time, I take this to bed with me to get me started to a good night's sleep. Hope this is helpful. Hugs, Judy

    Thanks everyone
    Thank you everyone for the advise. I will definately try them out.
  • carkris
    carkris Member Posts: 4,553 Member
    #8
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    Yvette39 said:

    Thanks everyone
    Thank you everyone for the advise. I will definately try them out.

    I have pain in my hips and
    I have pain in my hips and knees. I feel like an old lady especially on stairs later in the day. I still have PN in my hands and feet, I am worried that is permanant. I really miss work believe it or not, and it prohibits my working. I am getting a bit bummed by this.
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #9
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    carkris said:

    I have pain in my hips and
    I have pain in my hips and knees. I feel like an old lady especially on stairs later in the day. I still have PN in my hands and feet, I am worried that is permanant. I really miss work believe it or not, and it prohibits my working. I am getting a bit bummed by this.

    I endured - 18 straight weeks - NO BREAKS of
    TcH chemotherapy. At the end of my ordeal, did I forget to mention that I am currently having Hercepting 1 time every 3 weeks now that me 18 weeks or 6 cycles of chemo have finished .. well, I was fainting at the end of my 6th cycle .. crawled many days from bathroom to my bed. Slept sitting up, unable to pull myself off my sofa in the family room, called my son or husband via the cell phone to come down stair and pull me up... 1 time I had to go pee pee for 5 hours - no one home. I lived in a pretty dark place, unable to cook or think for myslef - for weeks and months after my 18th week of chemo .. I am still dealing with pain and discomft - and will be for years.

    #1 - Be kind to yourself
    #2 - Rest Often
    #3 - Ask for help

    and more importantly, ask for a referral to Physical Therapist - Chronic Fatigue, yes I am little a more spunkier now that I have completed 12 weeks of PT due to chronic fatigue and I have a script for another 12 weeks.


    Fight each day, and never give up. This is not in your head - I don't care what the research, books or doctors try to tell you. We hurt, we have chemo brain and we need clarification on how to deal, and get better.

    Vicki Sam

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