I completed 4 rounds of chemo (Velcade, cyclophosphamide, methylprednisone) about 10 weeks ago and am scheduled to have a stem cell transplant sometime later this year. I am not on any medications now except for acyclovir, calcium, vitamin D, vitamins etc. and Zometa monthly.
About 6 weeks ago I started noticing pain in my legs (below the knee, calf muscle area) when I woke up, but it went away within a couple of hours. The pain has gradually increased over time and it also hurts around my heel (ball of my foot) and the mid part of my foot.
I was initially given gabapentin (600 mg per day) along with oxycodone. The doctor does not think it is typical peripheral neuropathy. I was then given a prednisone dose pack and increased the oxycodone dose and increased gabapentin (Neurontin) (600 mg 3 times a day). I still had no relief and my doc got me to see a pain doc who put me on hydromorphone (Dilaudid) and increased gabapentin to 600 mg 3 times (2700 mg per day).
I am still in pain most of the day. It comes on and goes away and I cannot figure out what makes it come on or go away. When the pain goes away, I am almost 100% like my normal self, allowing me to do normal stuff. Using heating pads seem to help the pain. The pain is a dull and achy pain.
The pain is on both feet, but there are times when it is only on one. We also did a CAT scan of my lower spine to see if there was any impingement on the nerves. Results showed some stenosis and some evidence of impingement on my S1 nerve. The doc said that typically such impingement would cause pain above my knee - thigh area. I also had x-rays of my lower leg and feet which came out to be normal. My electrolytes and thyroid tests are also normal.
Doc thinks at least some of it is related to the chemo. I am generally in some degree of pain almost the entire day. Walking around seems to help.
Has anyone experienced something like this? Appreciate any comments or advice.
Forums
Re: Leg and foot pain after treatment - anyone had it?
My husband has your exact symptoms. I was specifically on the forums to see if anyone else had the calf and leg tenderness.
My husband has done 5 cycles of Revlimid, Velcade, and dexamethasone (RVD). We talked to the doctor about it, and he seems to think it is side effects from chemo.
I don't have any answers for you. I thought I would have my husband have an MRI etc. to see if there is something spine related. I think that will be my first step.
My husband has done 5 cycles of Revlimid, Velcade, and dexamethasone (RVD). We talked to the doctor about it, and he seems to think it is side effects from chemo.
I don't have any answers for you. I thought I would have my husband have an MRI etc. to see if there is something spine related. I think that will be my first step.
Re: Leg and foot pain after treatment - anyone had it?
Yes! I too get this! I've been on 1610 mg cyclophosphamide / Velcade since June this year. However, I don't have multiple myeloma, just one type plasma overproduction!
The pains in my legs appear often on the 2nd or the 3rd day during the treatment. It's always in both legs and starts from back of my knees to all the way down to my feet! It's quite unbearable at times. I also get this constant "tingling" in both my feet!
Neither my oncologist nor the hematologist could find an explanation for this, but increased my Oxycontin (oxycodone) dose from 20 mg to 25 mg, but to no avail!
I am quite desperate and if only this pain would go away!?
The pains in my legs appear often on the 2nd or the 3rd day during the treatment. It's always in both legs and starts from back of my knees to all the way down to my feet! It's quite unbearable at times. I also get this constant "tingling" in both my feet!
Neither my oncologist nor the hematologist could find an explanation for this, but increased my Oxycontin (oxycodone) dose from 20 mg to 25 mg, but to no avail!
I am quite desperate and if only this pain would go away!?
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Arat
Re: Leg and foot pain after treatment - anyone had it?
Since none of the pain meds have worked for me, I was just prescribed methadone. Also, I will be starting Lyrica (pregabalin) to replace gabapentin. I will post how that works for me in about a week.
Re: Leg and foot pain after treatment - anyone had it?
My husband's doctor said his leg aches are myopathy most likely caused by the dex. My husband will be going off of the dex for his stem cell transplant (SCT), so hoping the dex is the issue and it goes away. Watching and waiting.
Re: Leg and foot pain after treatment - anyone had it?
My doctor seems to think that mine is most likely due to the Velcade. I have been off chemo for 2 months now and the recommendation is go ahead with my transplant (SCT) in a couple of months. I am taking methadone for the pain and it helps.
Re: Leg and foot pain after treatment - anyone had it?
I too have started to get the leg pains. It's enough to prevent a good night sleep. It did not start until after I stopped treatments. I was taking Revlimid, Velcade, and dexamethasone. The only way I get relief is with exercise.
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John R
Re: Leg and foot pain after treatment - anyone had it?
Good day, everyone.
I have experienced all of what you have mentioned. Multiple myeloma can cause the pain / neuropathy. Velcade can help it and then cause it. And, lastly, depression can make it worse.
All the best,
Kali
I have experienced all of what you have mentioned. Multiple myeloma can cause the pain / neuropathy. Velcade can help it and then cause it. And, lastly, depression can make it worse.
All the best,
Kali
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Kali
Re: Leg and foot pain after treatment - anyone had it?
I, too, have leg and foot pain that affects my ability to sleep. I recently finished 4 rounds of treatment with Revlimid, Velcade, and dexamethasone (RVD), and am surprised by this remaining side effect. I start mobilization on Friday – two days away – and hope this will make a difference.
I am wondering what exercise helps. I do walk a lot, and am reluctant to do any medication as yet. Am waiting till after the mobilization to see if that makes a difference.
I had some neuropathy with the treatment, but no pain like this!
I am wondering what exercise helps. I do walk a lot, and am reluctant to do any medication as yet. Am waiting till after the mobilization to see if that makes a difference.
I had some neuropathy with the treatment, but no pain like this!
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MJH - Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 67
Re: Leg and foot pain after treatment - anyone had it?
I have also been experiencing the same type of pain. Ironically, I first noticed the pain before I was diagnosed. I had been experiencing the pain / soreness in the bottom of my feet, for quite sometime, and had just "assumed" it was from wearing high heeled shoes, and that it wasn't anything serious, especially since it went away within a half an hour, or so, of waking and walking.
The pain went away during my induction treatments, and through my autologous stem cell transplant (ASCT), but has now returned with a vengeance. I am currently only on Zometa once a month, and the pain in my feet has moved up my leg (mostly calf muscle, but sometimes shins as well). The pain in my calves almost feels light the muscles have shrunk and need to be stretched out, my feet feel like I've spent a week in foreign prison having them beaten with boards.
Exercise does seem to help, but I can't possibly walk around 24/7. I have not tried pain medications, because it doesn't last for extended periods of time, and I would really like to know what is causing it, before I start taking anything. My doctors are baffled as to what is causing the pain.
Thanks to all for sharing. I truly thought I was the only one experiencing this. You frequently hear about multiple myeloma patients with neuropathy, but this does not seem to be the same thing.
The pain went away during my induction treatments, and through my autologous stem cell transplant (ASCT), but has now returned with a vengeance. I am currently only on Zometa once a month, and the pain in my feet has moved up my leg (mostly calf muscle, but sometimes shins as well). The pain in my calves almost feels light the muscles have shrunk and need to be stretched out, my feet feel like I've spent a week in foreign prison having them beaten with boards.
Exercise does seem to help, but I can't possibly walk around 24/7. I have not tried pain medications, because it doesn't last for extended periods of time, and I would really like to know what is causing it, before I start taking anything. My doctors are baffled as to what is causing the pain.
Thanks to all for sharing. I truly thought I was the only one experiencing this. You frequently hear about multiple myeloma patients with neuropathy, but this does not seem to be the same thing.
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kshornb - Name: kshornber
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 52
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