I know that there are several posts about neuropathy while on Velcade, but I am not sure if what I have been experiencing is neuropathy.
I have had close to four cycles of Velcade on days 1, 4, 8 and 11 plus 40 mg of dex once per week.
I had zero complaints until this last Monday when I got started with my Zometa treatments. Zometa and Velcade were given on the same appointment.
I noticed some bone pain about 1:00 am that woke me up. It seems to be where my bone survey showed most of my lesions (ribs, femur, and spine). I am thinking that those areas were from the Zometa, but I did notice some pain in my heels and some numbness in a couple of toes on my right foot.
It seems that the more I walk, the better I feel. A day later, the bone pain is gone, but I still have some numbness in a few toes on my right foot. The heels still have some soreness, but not as bad.
Any ideas?
Thank You, Castaway
Forums
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Velcade - possible neuropathy, but not sure
You need to monitor this very closely. The most common time to develop Velcade neuropathy is cycles 4-6 of treatment. If symptoms persist, perhaps talk to your doctor about changing to once a week dosing, or getting a dose reduction.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: Velcade - possible neuropathy, but not sure
Dr. Valent,
Thank you for the reply. I have a call into my oncologist, and he always returns every call.
I just started another round of Velcade on Monday, but due to the holiday, I will be skipping Thursday's treatment, which might be a good thing if there are some issues. The Velcade is working extremely well and I hope I can continue with it.
Thank You, Castaway
Thank you for the reply. I have a call into my oncologist, and he always returns every call.
I just started another round of Velcade on Monday, but due to the holiday, I will be skipping Thursday's treatment, which might be a good thing if there are some issues. The Velcade is working extremely well and I hope I can continue with it.
Thank You, Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Velcade - possible neuropathy, but not sure
Castaway,
Just as Dr. Valent said, that is exactly when neuropathy hit me hard and it got to be pretty bad. I was receiving it by IV and not by injection, which was not approved at that time by the FDA.
I did not do a very good job of keeping my oncologist informed of just how bad it was getting. I ended up in the hospital for a week because of severe orthostatic blood pressure from peripheral nerve damage and that ended my Velcade use. I would black out cold when standing up. I think this could have been avoided if I spoke to my doctor more about it, but I thought at the time this was par for the course and something I would just have to accept and tough it out.
Nerve damage this severe from Velcade is not normal though. I have only heard a few others on the Beacon say they had this issue. In time, the condition went away completely after I was taken off Velcade. Velcade worked really well on my myeloma, too, and I had not become resistant to it.
I hope can still use it someday if I need to.
Just as Dr. Valent said, that is exactly when neuropathy hit me hard and it got to be pretty bad. I was receiving it by IV and not by injection, which was not approved at that time by the FDA.
I did not do a very good job of keeping my oncologist informed of just how bad it was getting. I ended up in the hospital for a week because of severe orthostatic blood pressure from peripheral nerve damage and that ended my Velcade use. I would black out cold when standing up. I think this could have been avoided if I spoke to my doctor more about it, but I thought at the time this was par for the course and something I would just have to accept and tough it out.
Nerve damage this severe from Velcade is not normal though. I have only heard a few others on the Beacon say they had this issue. In time, the condition went away completely after I was taken off Velcade. Velcade worked really well on my myeloma, too, and I had not become resistant to it.
I hope can still use it someday if I need to.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Velcade - possible neuropathy, but not sure
Eric,
Thank you for the info. I am getting the Velcade subQ.
I have read that some people take different over-the-counter drugs that help but that's like painting over an old rusty car. It looks ok for a while, but the real problem hasn't been addressed.
Thursday was supposed to be one of my treatment days, but due to the holiday, it was changed to Monday so that will give me a little break until my oncologist can figure this out.
I was taking Revlimid until I had a very bad rash. The Revlimid was working really well also, but at one point, it just seemed to have little baby steps bringing my labs down.
Three treatments of Velcade and what a difference my labs look like now. It seems like I just get some positive news from the treatment, then there is a negative reaction to the drug. I am leaning towards what Dr. Valent said about reducing the treatment, but that's for my oncologist to work on.
Revlimid and Velcade seem to be the big guns as far as treatments. I already lost one, hate to lose the other.
Have a great holiday!
Thank You, Castaway
Thank you for the info. I am getting the Velcade subQ.
I have read that some people take different over-the-counter drugs that help but that's like painting over an old rusty car. It looks ok for a while, but the real problem hasn't been addressed.
Thursday was supposed to be one of my treatment days, but due to the holiday, it was changed to Monday so that will give me a little break until my oncologist can figure this out.
I was taking Revlimid until I had a very bad rash. The Revlimid was working really well also, but at one point, it just seemed to have little baby steps bringing my labs down.
Three treatments of Velcade and what a difference my labs look like now. It seems like I just get some positive news from the treatment, then there is a negative reaction to the drug. I am leaning towards what Dr. Valent said about reducing the treatment, but that's for my oncologist to work on.
Revlimid and Velcade seem to be the big guns as far as treatments. I already lost one, hate to lose the other.
Have a great holiday!
Thank You, Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Velcade - possible neuropathy, but not sure
It doesn't sound like neuropathy in that neuropathy is extremely painful. While it's true you can lose some sensation (numbness), neuropathy feels like thousand bees are stinging you or your feet feel like they are on fire and frozen at the same time. If you don't quite get what I am describing, you probably don't have neuropathy.
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Joneman
Re: Velcade - possible neuropathy, but not sure
Joneman,
Thanks for your input. I don't have any sharp stinging as you described. I did have some feeling like my feet were warm nut not burning. I woke up this morning and all felt fine with just a small amount of numbness at two of my toes. Maybe this could be the shoes I am wearing.
My oncologist will go over this with me on Monday.
Happy Thanksgiving, Castaway
Thanks for your input. I don't have any sharp stinging as you described. I did have some feeling like my feet were warm nut not burning. I woke up this morning and all felt fine with just a small amount of numbness at two of my toes. Maybe this could be the shoes I am wearing.
My oncologist will go over this with me on Monday.
Happy Thanksgiving, Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Velcade - possible neuropathy, but not sure
Joneman wrote:
Neuropathy is not always as painful as you have described. No doubt many experience the bee stinging, pins and needles sensation but in my case I had more loss of sensation and numbness to certain nerve stimuli, such as temperature. It was difficult to tell if water was hot or cold if I put my foot into it. I had significant pain that eventually developed.
I was on morphine and hydromorphone for a while, but I would not describe it as bee sting like pain, it was different. Also the numbness and tingling set in before the pain did. You can have neuropathy that starts out as not being all that painful.
It doesn't sound like neuropathy in that neuropathy is extremely painful. While it's true you can lose some sensation (numbness), neuropathy feels like thousand bees are stinging you or your feet feel like they are on fire and frozen at the same time. If you don't quite get what I am describing, you probably don't have neuropathy."
Neuropathy is not always as painful as you have described. No doubt many experience the bee stinging, pins and needles sensation but in my case I had more loss of sensation and numbness to certain nerve stimuli, such as temperature. It was difficult to tell if water was hot or cold if I put my foot into it. I had significant pain that eventually developed.
I was on morphine and hydromorphone for a while, but I would not describe it as bee sting like pain, it was different. Also the numbness and tingling set in before the pain did. You can have neuropathy that starts out as not being all that painful.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Velcade - possible neuropathy, but not sure
Eric,
Thank you for the Info. i still have a small amount of numbness in a few of my toes. i have a really high arch in my feet and my current shoes really dont support them correctly. i am going to purchase some good support shoes today. maybe that will help with the heel and foot ache. it cant hurt thats for sure as i recently purchase some inexpensive shoes at a sporting goods store that could be one issue of the pain but the numbness is another issue.
I will see my local oncologist monday so i will go over all this with him. i also had a visit with my family practioner this week and i talked with him also. he did a small test with a fine pointed needle to check for the numbness. had to tell him where he was touching my feet. toes,heels,ball of the feet and up to my ankles. eyes closed, i could feel everywhere he checked. he also suggest some medication that would help but does not want to interfere with my oncologists treatments. he will send over his thoughts about the numbness to my oncologist. Thankfully they are in the same complex and work together for several paitents.
Thank You,
Castaway
Thank you for the Info. i still have a small amount of numbness in a few of my toes. i have a really high arch in my feet and my current shoes really dont support them correctly. i am going to purchase some good support shoes today. maybe that will help with the heel and foot ache. it cant hurt thats for sure as i recently purchase some inexpensive shoes at a sporting goods store that could be one issue of the pain but the numbness is another issue.
I will see my local oncologist monday so i will go over all this with him. i also had a visit with my family practioner this week and i talked with him also. he did a small test with a fine pointed needle to check for the numbness. had to tell him where he was touching my feet. toes,heels,ball of the feet and up to my ankles. eyes closed, i could feel everywhere he checked. he also suggest some medication that would help but does not want to interfere with my oncologists treatments. he will send over his thoughts about the numbness to my oncologist. Thankfully they are in the same complex and work together for several paitents.
Thank You,
Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Velcade - possible neuropathy, but not sure
I strongly disagree with Joneman's characterization of peripheral neuropathy presentation.
There are quite a number of independent articles spelling out PN signs, symptoms, treatments, etc. Avail yourself of those articles. Velcade's manufacturer goes to great lengths (see website, product inserts, disclaimers, warnings, etc) to warn of the likelihood of PN following use of Velcade, even at the reduced dosages.
Mine started out similarly, as a benign course, with numbness, and progressed steadily thereafter.
Good luck
There are quite a number of independent articles spelling out PN signs, symptoms, treatments, etc. Avail yourself of those articles. Velcade's manufacturer goes to great lengths (see website, product inserts, disclaimers, warnings, etc) to warn of the likelihood of PN following use of Velcade, even at the reduced dosages.
Mine started out similarly, as a benign course, with numbness, and progressed steadily thereafter.
Good luck
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Rneb
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