I'm just starting cycle 4 of Velcade, Revlimid, and dexamethasone. Last week was my off week and my feet were very swollen most of the time. The swelling goes down overnight but then returns pretty quickly in the morning. I've had ultrasounds to make sure nothing is a clot.
My question is: Is this sort of swelling something that happens often with Velcade, Revlimid, and dexamethasone treatment? Has anyone found anything that has helped alleviate it? It's pretty uncomfortable. So far my kidney function has been good, so I don't think it's that.
Thanks for any ideas.
Forums
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Swollen feet from VRD / RVD treatment?
Hi Joy
Sorry you are struggling with swollen feet.
I was diagnosed with multiple myeloma July 2012 after 4 months with a mis-diagnosed fractured hip. During the hip replacement surgery, they found tumors and that's when they discovered I had multiple myeloma.
After I started the Velcade / dex cycles, I ended up for four weeks with what I called "tree-trunk legs". All that the doctors recommended was that I should elevate my legs. I did take a diuretic one time, but it didn't help and my legs from knees to ankles would swell up every day by lunchtime. After the hip surgery, I did have a blood clot in my thigh and had to have Fragmin injections for about 5 months.
I know it's very uncomfortable, but I think there is nothing you can do apart from putting your feet up. Good luck with all of this.
Sorry you are struggling with swollen feet.
I was diagnosed with multiple myeloma July 2012 after 4 months with a mis-diagnosed fractured hip. During the hip replacement surgery, they found tumors and that's when they discovered I had multiple myeloma.
After I started the Velcade / dex cycles, I ended up for four weeks with what I called "tree-trunk legs". All that the doctors recommended was that I should elevate my legs. I did take a diuretic one time, but it didn't help and my legs from knees to ankles would swell up every day by lunchtime. After the hip surgery, I did have a blood clot in my thigh and had to have Fragmin injections for about 5 months.
I know it's very uncomfortable, but I think there is nothing you can do apart from putting your feet up. Good luck with all of this.
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KrysiaR - Name: Krysia
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 2012
- Age at diagnosis: 58
Re: Swollen feet from VRD / RVD treatment?
I had some slight swelling in my feet, ankles, and fingers during my two years of treatment with Kyprolis, Revlimid, and dexamethasone, all due to water retention (I was only able to get my wedding ring on a few times during that period). It generally occurred the 2nd-4th days after treatment.
My doctor prescribed Lasix, which is a diuretic, and I usually took one pill (along with potassium) in the morning on one or two of the days and that seemed to keep it in check. Exercising seemed to help as well.
My doctor prescribed Lasix, which is a diuretic, and I usually took one pill (along with potassium) in the morning on one or two of the days and that seemed to keep it in check. Exercising seemed to help as well.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: Swollen feet from VRD / RVD treatment?
Hi Krysia and Kevin,
Thanks for taking the time to respond. It feels good to know that others have experienced this too. I think I need to pick up my game with exercise, like you mentioned Kevin, and probably need to take time to elevate my legs more, as you mentioned Krysia. I'm also going to bring up the possibility of diuretics with my doctor. There are days when I can only wear flip-flops and not regular shoes. If this continues into the cold weather, I'll have to figure something out for shoes!
Thanks again!
Joy
Thanks for taking the time to respond. It feels good to know that others have experienced this too. I think I need to pick up my game with exercise, like you mentioned Kevin, and probably need to take time to elevate my legs more, as you mentioned Krysia. I'm also going to bring up the possibility of diuretics with my doctor. There are days when I can only wear flip-flops and not regular shoes. If this continues into the cold weather, I'll have to figure something out for shoes!
Thanks again!
Joy
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Swollen feet from VRD / RVD treatment?
My Dad also experiences swollen feet on the day of Velcade injection, and it lasts for about three days.
Our doctor said that if the swollen area is red, then you have a problem. If the swollen area is not red, and it disappears within several days, he said that it is not a problem.
Our doctor said that if the swollen area is red, then you have a problem. If the swollen area is not red, and it disappears within several days, he said that it is not a problem.
Re: Swollen feet from VRD / RVD treatment?
I had severe swelling of my legs ankles and feet . I determined that the swelling was caused by the Velcade used in my treatment. I found out later that if you get or got Velcade intravenously, you would get the swelling along with neropathy and it will not go away on its own. If you have the Velcade administered subcutaneously from the first time forward, you will not get the swelling and neuropathy. But once you get Velcade administered intravenously and get the swelling and neuropathy it will not go away on its own.
I have found after trial and error with a number of drug combinations working with my doctor, of course, that a combination of Lyrica (pregabalin) and Cymbalta (duloxetine) makes the leg ankle feet swelling and neuropathy go away. I found out that the issue with intravenous Velcade (the swelling, etc.) is permanent. The only way to keep the symptoms away and controlled is to continue with the drug combo of Lyrica and Cymbalta.
So if you have the issues already, which I believe are or were caused by administering Velcade intravenously, then ask your oncologist or your pain management doctor about getting on the drug combo. If you have not started getting Velcade, insist on getting it administered subcutaneously, aka subQ.
Thanks for reading my post. I hope it has helped at least one person.
I have found after trial and error with a number of drug combinations working with my doctor, of course, that a combination of Lyrica (pregabalin) and Cymbalta (duloxetine) makes the leg ankle feet swelling and neuropathy go away. I found out that the issue with intravenous Velcade (the swelling, etc.) is permanent. The only way to keep the symptoms away and controlled is to continue with the drug combo of Lyrica and Cymbalta.
So if you have the issues already, which I believe are or were caused by administering Velcade intravenously, then ask your oncologist or your pain management doctor about getting on the drug combo. If you have not started getting Velcade, insist on getting it administered subcutaneously, aka subQ.
Thanks for reading my post. I hope it has helped at least one person.
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Anonymous
Re: Swollen feet from VRD / RVD treatment?
Hi,
As we all know, everyone is different, so what effects one person may not be a problem for others at all.
As far as Kevin's article on posting how well you are or are not doing, my own personal feeling is I think most people would like to think that there might be some hope they will get better and examples of this are a good thing.
On the swelling of lower extremities, I can honestly say that I have had no cancer drugs since 2005 and I, too, have swelling of my legs, feet, and groin areas. Very uncomfortable. On top of this, I have permanent bullous blister-like protrusions all over the bottoms of my feet and can no longer wear normal shoes. I am wearing over sized shoe with added depth to allow a 7/16th sponge inner sole in my shoe so I can stand the pressure on the bottom of my feet. This becomes worse when my feet become swollen to what feels like the bursting point. This is all Without any Cancer Drugs at All.
Sincerely, N.G.
As we all know, everyone is different, so what effects one person may not be a problem for others at all.
As far as Kevin's article on posting how well you are or are not doing, my own personal feeling is I think most people would like to think that there might be some hope they will get better and examples of this are a good thing.
On the swelling of lower extremities, I can honestly say that I have had no cancer drugs since 2005 and I, too, have swelling of my legs, feet, and groin areas. Very uncomfortable. On top of this, I have permanent bullous blister-like protrusions all over the bottoms of my feet and can no longer wear normal shoes. I am wearing over sized shoe with added depth to allow a 7/16th sponge inner sole in my shoe so I can stand the pressure on the bottom of my feet. This becomes worse when my feet become swollen to what feels like the bursting point. This is all Without any Cancer Drugs at All.
Sincerely, N.G.
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Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
Re: Swollen feet from VRD / RVD treatment?
Thank you to everyone for taking time to reply. I think that's good advice to try and get the subcutaneous Velcade and luckily that is what I receive. There do seem to be more side effects involved with the infusion, from what I've heard.
Nipon - Sorry to hear about your foot problems. That stinks that you still have those issues even off the cancer drugs. I was thinking that the dex was the culprit, but maybe it's the Velcade.
I'm going to have to see if I can figure out a pattern and then see if there's something I can do about it. It's uncomfortable and certainly not attractive. Really bad case of "cankles" (calves with no boundaries to ankles). LOL
Nipon - Sorry to hear about your foot problems. That stinks that you still have those issues even off the cancer drugs. I was thinking that the dex was the culprit, but maybe it's the Velcade.
I'm going to have to see if I can figure out a pattern and then see if there's something I can do about it. It's uncomfortable and certainly not attractive. Really bad case of "cankles" (calves with no boundaries to ankles). LOL
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Swollen feet from VRD / RVD treatment?
Joy,
Ive had swelling and water retention as well. I monitor it closely and if my weight goes up along with the swelling I'll take a Lasix. I also use TEDD stockings (compression stockings) during work which helps a lot! I find exercise helps too.
Good luck,
Kate
Ive had swelling and water retention as well. I monitor it closely and if my weight goes up along with the swelling I'll take a Lasix. I also use TEDD stockings (compression stockings) during work which helps a lot! I find exercise helps too.
Good luck,
Kate
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mrsv118 - Name: Kate
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 7/19/12
- Age at diagnosis: 48
Re: Swollen feet from VRD / RVD treatment?
I too had swollen legs and feet. Wore ted hose, tried to keep my feet up as much as I could, and they also sent me for tests to make sure there were no blood clots and also a test to check my heart. They were all negative, thank the Lord.
But in my case it was the dex. Because, when I first started treatment, I was only on dex 40 mg twice a week for 3 weeks, then off one, which I started in March. By June I couldn't fit into most of my shoes. So I had to stop and in October I started the Velcade, dex and Zofran and the same thing happened again. But by December I ended up with neuropathy and had to go to physical therapy and I also again had to stop treatment.
Luckily my neuropathy has almost all gone except for numbness in my toes, but that comes and goes. So now I've been on Velcade (lower dose) sub-q w/dex and Zofran and I pray that the neuropathy doesn't come back. It was very painful and you can't sleep at night because that's when it's at its worst. But for 7 months my numbers stayed down and last month they started to go back up again. And, oh by the way, I was on a diuretic already, but it didn't touch the swelling.
So make sure you keep talking to your oncologist about it because sometimes all they are thinking about is that CR (complete remission), and meanwhile you're just blowing up like a balloon.
Take Care
But in my case it was the dex. Because, when I first started treatment, I was only on dex 40 mg twice a week for 3 weeks, then off one, which I started in March. By June I couldn't fit into most of my shoes. So I had to stop and in October I started the Velcade, dex and Zofran and the same thing happened again. But by December I ended up with neuropathy and had to go to physical therapy and I also again had to stop treatment.
Luckily my neuropathy has almost all gone except for numbness in my toes, but that comes and goes. So now I've been on Velcade (lower dose) sub-q w/dex and Zofran and I pray that the neuropathy doesn't come back. It was very painful and you can't sleep at night because that's when it's at its worst. But for 7 months my numbers stayed down and last month they started to go back up again. And, oh by the way, I was on a diuretic already, but it didn't touch the swelling.
So make sure you keep talking to your oncologist about it because sometimes all they are thinking about is that CR (complete remission), and meanwhile you're just blowing up like a balloon.
Take Care
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bdrake - Name: Bren
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 3/09/2012
- Age at diagnosis: 60
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