I was first diagnosed on Christmas Eve 2014, 4 days before my 64th birthday. Confirmed with a bone biopsy on December 31. Started Revlimid, Velcade, and dexamethasone (RVD) treatment January 21, 2015.
First 3 cycles, few side effects other than a little neuropathy in my feet, and the numbers from my blood work were looking very good. The chemo was knocking the cancer back. After the 4th round, I had no detectable cancer cells in my blood, and my bone marrow showed a drop from 70% to less than 3%.
Unfortunately, during this time, the neuropathy in my feet got much worse, and I developed severe muscle pain in my legs. I finished my fifth round on April 30 (no Revlimid this round). May 7 I started acupuncture to try to get some relief from the muscle pain and neuropathy. May 15 started Neupogen shots to prepare for stem cell harvest, which took place over 3 days (May 18, 19, 20). I am not scheduled for my stem cell transplant until mid July because I am going on a short vacation.
I feel that, compared to many of my fellow warriors, I am very lucky, but with the pain in my legs, the pain meds I am taking, etc, I can no longer drive myself and I am feeling pretty beaten down. Had a few days lately that it felt like someone pulled the plug and all my energy drained out. I had really hoped that some of this would get better since it's been 3 weeks since I had any chemo.
This is my first post, I have been reading the Beacon for several months but today seemed to be the right day to share my story. Thanks to all of you, you inspire me and help me every day.
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6 posts
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AnneV - Name: AnneV
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 24, 2014
- Age at diagnosis: 63
Re: Myeloma and me
Welcome to the forum, Anne, and thanks for introducing yourself.
Although I'm glad you've responded well to your treatment, I'm sorry about the side effects you've experienced. Are you still on treatment now, in the period leading up to your transplant?
As you probably know, the neuropathy in your feet is most likely due to the Velcade, although Revlimid also can cause neuropathy. In many cases, Velcade-related neuropathy will get better with time.
You said that the pain in your legs is muscle pain. Has your doctor given you an explanation for what might be causing the pain? I ask because I'm concerned that perhaps the pain is coming from a pinched nerve. There are some suggestions and potential explanations for such pain in this forum thread, which you might find helpful:
"Extreme pain & discomfort in leg" (started Oct 10, 2013)
I hope both the neuropathy and leg pain improve with time, and that your transplant goes smoothly.
Although I'm glad you've responded well to your treatment, I'm sorry about the side effects you've experienced. Are you still on treatment now, in the period leading up to your transplant?
As you probably know, the neuropathy in your feet is most likely due to the Velcade, although Revlimid also can cause neuropathy. In many cases, Velcade-related neuropathy will get better with time.
You said that the pain in your legs is muscle pain. Has your doctor given you an explanation for what might be causing the pain? I ask because I'm concerned that perhaps the pain is coming from a pinched nerve. There are some suggestions and potential explanations for such pain in this forum thread, which you might find helpful:
"Extreme pain & discomfort in leg" (started Oct 10, 2013)
I hope both the neuropathy and leg pain improve with time, and that your transplant goes smoothly.
Re: Myeloma and me
TerryH,
Thanks for your response. My doctor has not been able to explain the pain in my legs. I have been off my chemo drugs for 3 weeks. When I was taking dex, it helped the leg pain for several days after taking it, but then on my off week, it would get bad again. I thought it was muscle pain, because the pain is in my calves and thighs on both legs. It hurts more when I stretch my legs out and less when I walk around.
I have an appointment with my oncologist this Thursday and I will discuss this with him again. So far, he has just suggested oxycodone for the pain. I will discuss the possibility of a pinched nerve when I see him.
Anne
Thanks for your response. My doctor has not been able to explain the pain in my legs. I have been off my chemo drugs for 3 weeks. When I was taking dex, it helped the leg pain for several days after taking it, but then on my off week, it would get bad again. I thought it was muscle pain, because the pain is in my calves and thighs on both legs. It hurts more when I stretch my legs out and less when I walk around.
I have an appointment with my oncologist this Thursday and I will discuss this with him again. So far, he has just suggested oxycodone for the pain. I will discuss the possibility of a pinched nerve when I see him.
Anne
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AnneV - Name: AnneV
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 24, 2014
- Age at diagnosis: 63
Re: Myeloma and me
Anne,
Hang in there. I also had really bad neuropathy much like you describe from Velcade during my initial induction treatment three years ago, and I also was very drained energy wise. But Velcade did work really well for me too. My screaming back pain all but disappeared in about a month, and with dexamethasone a few months later, I was in a very good partial remission when I had to stop Velcade because of the side effect problems. In time, eventually the neuropathy subsided a lot. I still have some today, three years later, but it is not that bad and it is easy to live with.
Certainly talk with your doctor about all the neuropathy problems you are having and possible solutions. In my case, I was given Dilaudid (hydromorphone) and morphine ER for my neuropathy pain, which really was kind of a carryover from using these drugs for the back pain I had. Oxycodone is an even more potent opiate drug. I can say that, in my case, the opiate drugs helped some, but by no means where they as effective as I would have liked them to be, and they can have their complications (which I had to deal with).
A suggestion I have is to talk with your doctor about trying to use something less potent than oxycodone first, such as Diluadid or morphine, and see if that helps at all before jumping into oxycodone first. You said you already are on pain meds, so maybe you have already tried that.
A better path yet before jumping to opiates pain killers may be to discuss with your doctor about trying the Lyrica (pregabalin), Neurontin (gabapentin), and other drugs in these classes if you have not already. I tried some of these, but they did not seem to help that much, but other Beacon contributors have said they have had really good results with these drugs.
If opiates do work for your neuropathy, then I am not trying to talk you out of using them and just suffering with the pain, but I would recommend trying other options first before just jumping into oxycodone, based on my experience.
I did not try acupuncture, but I would next time. Some Beacon readers said they had good results with acupuncture, and others have not. Hopefully you do, and I have a friend who gets regular acupuncture for back pain and says it works really well for him. Please let us know if it works for you.
I also found keeping busy with something or distraction is a good way to deal with the neuropathy pain. It can help it subside into the background. I found that it is when having nothing to do, like when trying to fall asleep at night, when it was at its worst. Physical activity, such as walking or riding on an exercise bike, helped a lot. I would often get up in the middle of the night just to walk around the house for a while or soft pedal on my bike trainer.
What worked best of all, strangely enough, was swimming. When I swam laps in the pool, the pain would completely disappear, it worked better than any pain killer or other drug I tried, and it was kind of spooky how well it worked. Other Beacon contributors who have had neuropathy challenges have said the same thing about swimming. But it was mostly a temporary thing. 5 minutes after getting out of the pool, I would feel it coming back again. But the swimming offered a welcome relief from the neuropathy at least for a little while. And the exercise is certainly a good thing too.
One last recommendation is compression socks, like those sold in athletic clothing stores. These are tight fitting socks that compress and squeeze the legs muscles up to the knee. I found them to be a drug free way to help with the pain, and I was always wearing them at night. Not a miracle, but they did make a noticeable improvement for me.
I hope the SCT goes well for you,
Eric
Hang in there. I also had really bad neuropathy much like you describe from Velcade during my initial induction treatment three years ago, and I also was very drained energy wise. But Velcade did work really well for me too. My screaming back pain all but disappeared in about a month, and with dexamethasone a few months later, I was in a very good partial remission when I had to stop Velcade because of the side effect problems. In time, eventually the neuropathy subsided a lot. I still have some today, three years later, but it is not that bad and it is easy to live with.
Certainly talk with your doctor about all the neuropathy problems you are having and possible solutions. In my case, I was given Dilaudid (hydromorphone) and morphine ER for my neuropathy pain, which really was kind of a carryover from using these drugs for the back pain I had. Oxycodone is an even more potent opiate drug. I can say that, in my case, the opiate drugs helped some, but by no means where they as effective as I would have liked them to be, and they can have their complications (which I had to deal with).
A suggestion I have is to talk with your doctor about trying to use something less potent than oxycodone first, such as Diluadid or morphine, and see if that helps at all before jumping into oxycodone first. You said you already are on pain meds, so maybe you have already tried that.
A better path yet before jumping to opiates pain killers may be to discuss with your doctor about trying the Lyrica (pregabalin), Neurontin (gabapentin), and other drugs in these classes if you have not already. I tried some of these, but they did not seem to help that much, but other Beacon contributors have said they have had really good results with these drugs.
If opiates do work for your neuropathy, then I am not trying to talk you out of using them and just suffering with the pain, but I would recommend trying other options first before just jumping into oxycodone, based on my experience.
I did not try acupuncture, but I would next time. Some Beacon readers said they had good results with acupuncture, and others have not. Hopefully you do, and I have a friend who gets regular acupuncture for back pain and says it works really well for him. Please let us know if it works for you.
I also found keeping busy with something or distraction is a good way to deal with the neuropathy pain. It can help it subside into the background. I found that it is when having nothing to do, like when trying to fall asleep at night, when it was at its worst. Physical activity, such as walking or riding on an exercise bike, helped a lot. I would often get up in the middle of the night just to walk around the house for a while or soft pedal on my bike trainer.
What worked best of all, strangely enough, was swimming. When I swam laps in the pool, the pain would completely disappear, it worked better than any pain killer or other drug I tried, and it was kind of spooky how well it worked. Other Beacon contributors who have had neuropathy challenges have said the same thing about swimming. But it was mostly a temporary thing. 5 minutes after getting out of the pool, I would feel it coming back again. But the swimming offered a welcome relief from the neuropathy at least for a little while. And the exercise is certainly a good thing too.
One last recommendation is compression socks, like those sold in athletic clothing stores. These are tight fitting socks that compress and squeeze the legs muscles up to the knee. I found them to be a drug free way to help with the pain, and I was always wearing them at night. Not a miracle, but they did make a noticeable improvement for me.
I hope the SCT goes well for you,
Eric
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Myeloma and me
Hi,
I had the same treatment back in 2012 and it worked well, I am now approaching 3 years since the end of the Revlimid / Velcade treatment, and my specialist has just confirmed that there is no necessity to recommence further treatment. I still receive Zometa four times per year.
My peripheral neuropathy was severe in 2012 and has gradually reduced to a level where I now only find it necessary to have a walk in the evenings to satisfy my restless legs before sleeping.
What may be of interest is that, after receiving the strong chemo in May 2012 for the purpose of the stem cell harvest, I felt unwell for many weeks, hair fell out of course, I was very vulnerable to chest infections, and various other side effects including dizzy spells. Once treatment stopped in the summer of 2012, I started to feel well and I have been able to travel by car or by plane without any problems.
I still find it a bit stressful opening my blood test results every two months, but they seem to be well stabilised. I declined the stem cell transplant, keeping this as an option if problems arise.
I just want you to know that these treatments can work and enable you to enjoy a near-normal life for many months or years.
I had the same treatment back in 2012 and it worked well, I am now approaching 3 years since the end of the Revlimid / Velcade treatment, and my specialist has just confirmed that there is no necessity to recommence further treatment. I still receive Zometa four times per year.
My peripheral neuropathy was severe in 2012 and has gradually reduced to a level where I now only find it necessary to have a walk in the evenings to satisfy my restless legs before sleeping.
What may be of interest is that, after receiving the strong chemo in May 2012 for the purpose of the stem cell harvest, I felt unwell for many weeks, hair fell out of course, I was very vulnerable to chest infections, and various other side effects including dizzy spells. Once treatment stopped in the summer of 2012, I started to feel well and I have been able to travel by car or by plane without any problems.
I still find it a bit stressful opening my blood test results every two months, but they seem to be well stabilised. I declined the stem cell transplant, keeping this as an option if problems arise.
I just want you to know that these treatments can work and enable you to enjoy a near-normal life for many months or years.
-
Ian Forsyth
Re: Myeloma and me
Thanks everyone for your great advice. I love having people who know what I am going through and are so generous in helping others.
I did try some other drugs before the oxycodone, but they didn't touch the pain. I have cut back on the amount of oxy I am taking and the pain is still mostly controlled. I find that getting in the hot tub and exercising my legs in the hot water helps temporarily. I also use a heating pad on my legs to help me relax and get to sleep. I take Gabapentin 3 times a day and have just started taking 20mg of dex once a week. In 2 weeks I am going on the vacation we planned when I was diagnosed with multiple myeloma. Until I started the Dex last Friday I had not had chemo in 3 weeks. When I saw my oncologist last Thursday he added a muscle relaxer to the drug mix. We will discuss this again on Friday when I see him again.
Anne
I did try some other drugs before the oxycodone, but they didn't touch the pain. I have cut back on the amount of oxy I am taking and the pain is still mostly controlled. I find that getting in the hot tub and exercising my legs in the hot water helps temporarily. I also use a heating pad on my legs to help me relax and get to sleep. I take Gabapentin 3 times a day and have just started taking 20mg of dex once a week. In 2 weeks I am going on the vacation we planned when I was diagnosed with multiple myeloma. Until I started the Dex last Friday I had not had chemo in 3 weeks. When I saw my oncologist last Thursday he added a muscle relaxer to the drug mix. We will discuss this again on Friday when I see him again.
Anne
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AnneV - Name: AnneV
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 24, 2014
- Age at diagnosis: 63
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