Horrible Joint Pain, not responding to pain meds

Gottahavefaith
Gottahavefaith Member Posts: 24
in Breast Cancer #1

As all you gals know, my mom recently diagnosed with a Breast Cancer recurrence 25 years after her diagnosis in 1988. She is Stage 4. She started Arimidex and Faslodex last month and just last week Herceptin.

Im in tears watching her suffer with horrible pain ( not cancer pain) that is clearly from the Arimidex, Faslodex and maybe even the Herceptin. The pain moves around. It was really bad in her sacro iliac region then to hips, etc. She knows she needs these antiestrogens to fight the cancer but she feels so bad she says its like she walks (barely) like a woman 95 years old. The pain is truly becoming unbearable and I feel helpless. She is on a Fentanyl patch and takes percocet as needed and its not helping. She has significant pain in her torso ( hips) these past few days. 

Seeing her suffer this pain makes me understand why she could just say enough and quit the meds. Shes at the end of her rope. 

can any of you gals tell me if this improves over time OR will she have this forever Since she needs to SERM and the AI? 

She is on Zometa as well. Cannot take advil etx due to side effects on kidney.

what helped any of you cope/deal with the horrible joint pain/ arthritis? Any meds better than others? If you told your oncologist what did they say or suggest? She is in month 2 of treatment. Does pain lessen over time? Is it the worst for the first 6 months?

I want her to be able to be treated but if this suffering is worse than the silent mets she has what is the point? i just dont see why the cancer cannot be treated and the side effects of the meds like this horrific pain be handled... Its very sad and I just cry all the time wanting to help. Ive read ladies saying they get pain, some say severe. How do you cope? She asks me this daily.

Comments

  • Gottahavefaith
    Gottahavefaith Member Posts: 24
    #2
    Vitamin D

    My mom takes Vitamin D daily ( 4000). Her level last checked in summer was good ( before the recurrence diagnosed). 

    Did any of you ladies take the high doses weekly of 50,000 IUs And if so did you notice improvement?

  • New Flower
    New Flower Member Posts: 4,294
    #3
    Gottahavefaith said:

    Vitamin D

    My mom takes Vitamin D daily ( 4000). Her level last checked in summer was good ( before the recurrence diagnosed). 

    Did any of you ladies take the high doses weekly of 50,000 IUs And if so did you notice improvement?

    Hi I am on similar regiment

    I am Faslodex on Faslodex. Movement and light exercise help a llot short walks 

    acupunture, trigger point injections and light yoga

     

    hugs

  • camul
    camul Member Posts: 2,537
    #4
    Gottahavefaith said:

    Vitamin D

    My mom takes Vitamin D daily ( 4000). Her level last checked in summer was good ( before the recurrence diagnosed). 

    Did any of you ladies take the high doses weekly of 50,000 IUs And if so did you notice improvement?

    I take weekly 50,000 iu
    It is to strengthen the bones. I have never noticed a difference in the pain. I was on Xgeva shot monthly and that made my whole body ache. I too am on Fentanyl patch, I have dilauded for breakthrough pain but it makes me really nauseated so I wont take it. Sometimes I will take an ibuprofin 800 bu I am on cumiden, from bkoodclots from one of the chemos I was on. With the weather changing, the joint pain has been worse. I use a heating pad on hips and lower back seems to help some, but in my case that is bone pain.
    I wpuld check with a pain specialist.
    I wish your mom the best. Mets suck, butbwith mine it was the
    edcruciating back and leg pain tat sent me to onco early where I was diagnosed.
    I wish your mom the best, and you as it is a disease that affects the whole family. My mom had head and neck cancer, and it was very hard to see her in pain.
    Hugs...
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #5
    I have had some really

    I have had some really horrible, incapacitating joint pain after herceptin and perjeta.  I literally can't raise my arms!   My oncologist told me that this was most likely caused by my body's reaction to either one of those drugs or both.  The drugs are antibodies that can cause your body to react  and cause what my onc calls "serum sickness."  Make sure her onc is aware of her symptoms--really talk with him or her about them.  My onc says I must get the steroids with the durgs and I am also taking claritin a few days before and after and that seems to have really helped me.

    When I do have the reaction, my oncology nurses and my onc say to knock myself out with ativan and pain killers.  Unfortunately, my stomach won't let me take the pain killers-even with zofran.  But the ativan really seems to help.I have been on everyone of the other drugs that you mentioned (faslodex, arimidex, zometa), but none of them caused the really severe joint pain except the herceptin/perjeta chemo.  I did have mild to moderate joint pain with arimidex and faslodex, but not incapacitating.  However, we are all different and it may be hard to puzzle it out.

    Also, I am on an antidepressant, because I was getting overwhelmed.  Antidepressants do not just treat depression; they are also used for anxiety and pain.  All of these symptoms we cancer survivors have in spades.  Make sure if she decides to go that route that she asks her oncologist for a prescription as they will prescribe one compatible with her treatment.  Oncologists are usually very aware that cancer patients have an increased risk of anxiety and or depression-not to mention pain.

    Hope some of this helps!!!  Big hugs and prayers to you both!!!

  • Gottahavefaith
    Gottahavefaith Member Posts: 24
    #6
    CypressCynthia said:

    I have had some really

    I have had some really horrible, incapacitating joint pain after herceptin and perjeta.  I literally can't raise my arms!   My oncologist told me that this was most likely caused by my body's reaction to either one of those drugs or both.  The drugs are antibodies that can cause your body to react  and cause what my onc calls "serum sickness."  Make sure her onc is aware of her symptoms--really talk with him or her about them.  My onc says I must get the steroids with the durgs and I am also taking claritin a few days before and after and that seems to have really helped me.

    When I do have the reaction, my oncology nurses and my onc say to knock myself out with ativan and pain killers.  Unfortunately, my stomach won't let me take the pain killers-even with zofran.  But the ativan really seems to help.I have been on everyone of the other drugs that you mentioned (faslodex, arimidex, zometa), but none of them caused the really severe joint pain except the herceptin/perjeta chemo.  I did have mild to moderate joint pain with arimidex and faslodex, but not incapacitating.  However, we are all different and it may be hard to puzzle it out.

    Also, I am on an antidepressant, because I was getting overwhelmed.  Antidepressants do not just treat depression; they are also used for anxiety and pain.  All of these symptoms we cancer survivors have in spades.  Make sure if she decides to go that route that she asks her oncologist for a prescription as they will prescribe one compatible with her treatment.  Oncologists are usually very aware that cancer patients have an increased risk of anxiety and or depression-not to mention pain.

    Hope some of this helps!!!  Big hugs and prayers to you both!!!

    Thank you

    Thank you for sharing. Im not super keen on this onco. She told him today shes incapacitated and he says guess well give you more rads! What? This is clearly the Arimidex or Herceptin. This is migratory joint pain Severe like so many ladies know all too well. He didnt know about the studies showing Vitamin D in large doses monitored by a doc has been shown to help alot of women. That concerned me as Arimidex is well known just like the others to cause musculoskeletal pain that CAN be severe. These guys downplay it alot imho. 

    Since she started tx one month ago her tumor markers have dropped. Yes, she is on SSRI tx but smaller dose. I talked with her about increasing and she refused. Yes, depression and anxiety is a normal experience with this damn cancer! When I hear her say Im worse than I was and this is no way to carry on ( in pain), it pains me to know if she says she wants to quit the meds to rid the pain the cancer will indeed take over. I see her point of taking drugs to fight the cancer but being totally consumed by pain as a side effect may not be worth it! 

    The Herceptin seems to have pushed her over the edge. She literally cannot bend over, hobbles walking. 

    Sounds like your onco is in touch. Im a scientist by profession and I totally get what your MD says about a serum sickness type response. 

    Has your pain from Herceptin waned any between treatments Or stayed constant with the same intensity?

  • Gottahavefaith
    Gottahavefaith Member Posts: 24
    #7
    camul said:

    I take weekly 50,000 iu
    It is to strengthen the bones. I have never noticed a difference in the pain. I was on Xgeva shot monthly and that made my whole body ache. I too am on Fentanyl patch, I have dilauded for breakthrough pain but it makes me really nauseated so I wont take it. Sometimes I will take an ibuprofin 800 bu I am on cumiden, from bkoodclots from one of the chemos I was on. With the weather changing, the joint pain has been worse. I use a heating pad on hips and lower back seems to help some, but in my case that is bone pain.
    I wpuld check with a pain specialist.
    I wish your mom the best. Mets suck, butbwith mine it was the
    edcruciating back and leg pain tat sent me to onco early where I was diagnosed.
    I wish your mom the best, and you as it is a disease that affects the whole family. My mom had head and neck cancer, and it was very hard to see her in pain.
    Hugs...

    Pain

    I was hoping youd say the high dose vit d helped... 

    Well, all I can do is try to get this onco to see how the treatment is truly completely incapacitating her. So far, I feel hes out of touch.

    i think he may be the type not to admit readily these drugs have effects. My mom asked him just today if her terrible joint pains could be from Arimidex and he took a dim view. Really? Because she didnt have migrating joint pain prior to these meds just pain after her accidental fall that caused a damn sacral fracture. The bone mets were incidental, like the liver ones...

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