I am currently on the fourth cycle of a six-cycle regimen for multiple myeloma consisting of Cytoxan (cyclophosphamide), Kyprolis (carfilzomib), and dexamethasone.
This treatment has been highly effective against my kappa light chain disease. I also am on Zometa and get IVIG infusions.
My problem is persistent, intense bone pain that has not abated despite the dramatic drop in my free light chain numbers. I have been told that this is due to the fact that I have extensive bone damage caused by the multiple myeloma.
I am on a fentanyl patch (100 mcg) and oxycodone (15 mg) for breakthrough pain. I am having trouble on the oxycodone due to constipation and diarrhea, even with laxatives. Besides, this combo only reduces the pain by about one third.
The pain causes me to spend most of my time in bed.
Most recently, my primary care physician has suggested NSAIDs like naproxen (Aleve), or ketorolac (Toradol). He believes my kidney function is good enough to tolerate these drugs.
I am wondering if anyone has tried these NSAIDs for myeloma bone pain?
Thanks.
Forums
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: NSAIDs for persistent bone pain?
I'm really sorry to hear about how much pain you are in, MrP.
Which type of pain do you think is immobilizing you the most – the chronic pain, or the breakthrough pain?
Also, are the side effects of the pain killers playing a big role in your being immobilized, or is it mainly the pain that is laying you up?
For breakthrough pain, there is the option of the "fentanyl lollipop" (Actiq). I don't know how often it is prescribed in a situation such as yours, but it might be worth discussing with your doctor.
Celebrex may be something to consider including in the mix of medications for your chronic pain, although it can have kidney-related side effects. The upside, however, is that there is evidence Celebrex may have anti-myeloma activity:
HM Prince et al, "A multicenter phase II trial of thalidomide and celecoxib for patients with relapsed and refractory multiple myeloma", Clinical Cancer Research, August 2005 (full text of article)
Other options to consider for the chronic pain are tramadol and diclofenac. Also, if you're not already taking it, Tylenol (acetaminophen, paracetamol) should be considered, since it has only limited kidney toxicity (although you have to watch out for its liver toxicity).
Best of luck to you. I hope you find a solution that works for you.
Which type of pain do you think is immobilizing you the most – the chronic pain, or the breakthrough pain?
Also, are the side effects of the pain killers playing a big role in your being immobilized, or is it mainly the pain that is laying you up?
For breakthrough pain, there is the option of the "fentanyl lollipop" (Actiq). I don't know how often it is prescribed in a situation such as yours, but it might be worth discussing with your doctor.
Celebrex may be something to consider including in the mix of medications for your chronic pain, although it can have kidney-related side effects. The upside, however, is that there is evidence Celebrex may have anti-myeloma activity:
HM Prince et al, "A multicenter phase II trial of thalidomide and celecoxib for patients with relapsed and refractory multiple myeloma", Clinical Cancer Research, August 2005 (full text of article)
Other options to consider for the chronic pain are tramadol and diclofenac. Also, if you're not already taking it, Tylenol (acetaminophen, paracetamol) should be considered, since it has only limited kidney toxicity (although you have to watch out for its liver toxicity).
Best of luck to you. I hope you find a solution that works for you.
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Jonah
Re: NSAIDs for persistent bone pain?
Hi Jonah
Thanks so much for your response.
To answer your question, it is the chronic pain that mostly impacts me. On a bad day, I get spurts of breakthrough pain, for which I take the oxycodone.
Typically, the more activity I engage in, the worse the pain.
The side effects of the pain meds are not immobilizing me, but it is true that the constipation, mostly from the oxycodone, is bothersome, in spite of the use of laxatives.
You have given me some good suggestions, which I will discuss with my doctor.
Thanks so much for your response.
To answer your question, it is the chronic pain that mostly impacts me. On a bad day, I get spurts of breakthrough pain, for which I take the oxycodone.
Typically, the more activity I engage in, the worse the pain.
The side effects of the pain meds are not immobilizing me, but it is true that the constipation, mostly from the oxycodone, is bothersome, in spite of the use of laxatives.
You have given me some good suggestions, which I will discuss with my doctor.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: NSAIDs for persistent bone pain?
Is your pain being managed by a chronic pain / palliative care doctor? If not, I would suggest that you ask for a referral to one.
I hope that you find some relief soon,
Nancy in Phila
I hope that you find some relief soon,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: NSAIDs for persistent bone pain?
Thank you, Nancy.
Yes, my current pain medications (fentanyl and oxycodone) were prescribed by a palliative care doctor. However, I went to my primary care doctor to look at alternatives to the oxycodone, and he suggested NSAIDs to try to get better relief without side effects like constipation.
However, I have read that these types of pain meds were hard on the kidneys and therefore rarely recommended for myeloma pain.
Yes, my current pain medications (fentanyl and oxycodone) were prescribed by a palliative care doctor. However, I went to my primary care doctor to look at alternatives to the oxycodone, and he suggested NSAIDs to try to get better relief without side effects like constipation.
However, I have read that these types of pain meds were hard on the kidneys and therefore rarely recommended for myeloma pain.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: NSAIDs for persistent bone pain?
I'm glad that you are seeing a pain doctor, but so sorry that it isn't helping you. NSAIDS are not recommended for us to take at any time except for possibly very short-term acute pain. They tend to clog the kidneys and since we always have a risk of kidney problems with the myeloma, why risk another problem? Celebrex is also an NSAID as are ibuprofen and naproxen. It stinks doesn't it?
Nancy
Nancy
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: NSAIDs for persistent bone pain?
Hi MrP,
I agree with Nancy that you probably should discuss the pain medication advice you've received with your myeloma specialist before starting to take the NSAIDS. I misunderstood what you wrote earlier to mean that you were advised by your myeloma specialist that it was okay to start taking NSAIDS. Your myeloma specialist probably is the best person to balance what is best for your kidneys and what is best for reducing your pain (and improving your quality of life).
Also following up on Nancy's comments, diclofenac is an NSAID, but tramadol is not -- it's an opioid.
I agree with Nancy that you probably should discuss the pain medication advice you've received with your myeloma specialist before starting to take the NSAIDS. I misunderstood what you wrote earlier to mean that you were advised by your myeloma specialist that it was okay to start taking NSAIDS. Your myeloma specialist probably is the best person to balance what is best for your kidneys and what is best for reducing your pain (and improving your quality of life).
Also following up on Nancy's comments, diclofenac is an NSAID, but tramadol is not -- it's an opioid.
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Jonah
Re: NSAIDs for persistent bone pain?
You haven't really said where your worst pain is. If it is back pain, have you been evaluated to see whether vertebroplasty or kyphoplasty might help?
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NancyK
Re: NSAIDs for persistent bone pain?
Thanks, Jonah.
Nancy
I have had two kyphoplasty procedures, and both helped, but did not eliminate the pain, which is not only in my back, but in my arms, legs, chest, and hips as well.
Naproxyn does seem to help, but I don't want to risk kidney problems.
Nancy
I have had two kyphoplasty procedures, and both helped, but did not eliminate the pain, which is not only in my back, but in my arms, legs, chest, and hips as well.
Naproxyn does seem to help, but I don't want to risk kidney problems.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: NSAIDs for persistent bone pain?
Hi Mr. PH,
I am sure that seeing a pain doctor will help, and I understand that it is important to stay ahead of the pain, so that it doesn't intensify. And good to know that you are taking Zometa, which will help your bones to heal also.
I had terrible pain after the compression fractures, which did gradually heal after several months. One medication I took was a prescription muscle relaxant – Flexeril (cyclobenzaprine – since my back muscles were in painful spasms at times. I didn't take any NSAIDS, but was able to take Tylenol Extra Strength (OTC). Of course I checked with my doctors first before taking any meds.
Hope that helps and that the pain starts to diminish soon. To get some mobility, could you lean on a walker and move around that way? I did that for awhile also.
I am sure that seeing a pain doctor will help, and I understand that it is important to stay ahead of the pain, so that it doesn't intensify. And good to know that you are taking Zometa, which will help your bones to heal also.
I had terrible pain after the compression fractures, which did gradually heal after several months. One medication I took was a prescription muscle relaxant – Flexeril (cyclobenzaprine – since my back muscles were in painful spasms at times. I didn't take any NSAIDS, but was able to take Tylenol Extra Strength (OTC). Of course I checked with my doctors first before taking any meds.
Hope that helps and that the pain starts to diminish soon. To get some mobility, could you lean on a walker and move around that way? I did that for awhile also.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
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