[quote="LindaO"]Hi all,
I have been on Revlimid (25 mg, 15 mg, 10 mg) for 5 1/2 years, since my multiple myeloma diagnosis. I have never had a stem cell transplant, and my labs are pretty stable. I feel fortunate that I have tolerated the Revlimid well all this time, the only side effect I have had to deal with is intestinal issues.
Now I have been noticing swelling in my ankles and feet. Not really bad, but enough for me to question what might be going on. I must add that I had my right hip replaced at the time of diagnosis due to damage from the multiple myeloma. The swelling is a bit worse in this leg.
I don't know whether this is a concern for my multiple myeloma doctor or my orthopedic doctor. Has anyone experienced this?
Thank you in advance for any insight into this. The Myeloma Beacon is the best!
Linda[/quote]
I don't know which pharmacy you are getting your Revimed from. I use Diplomat, their nurses are very knowledgeable about side-effects. I usually call my oncologist's office too.
I am take 10mg on a 21 day cycle. I had some swelling, the doctor checks my ankles every time I go in. Try to keep your feet up when you can.
Forums
Re: Swelling in ankles and feet while taking Revlimid
You've gotten some good suggestions, especially having a Doppler ultrasound study of your leg to rule out blood clots. I recently had an episode of blood clots in my lungs, but had no signs of them other than some episodic shortness of breath. If your oncologist doesn't want to order one, talk with your primary doctor about the new swelling and your wish to have the study of your leg. Hopefully it is nothing other than one of the side effects of Revlimid that is stated in the drug insert.
I've had some swelling in both of my feet and ankles for many years that has gotten more persistent since being on Revlimid for induction for 8 months and now since relapse for 2 1/2 years. I wear compression stockings every day - 12-18 mg of pressure - to manage the swelling. TED stockings do not provide enough compression. You might be able to get away with the 8-12 mg of pressure stockings. I get mine through BriteLifeDirect website and order Juzo soft stockings because they have a silicone band at the top that keeps the stockings from riding down when you move in them. I get knee high stockings. They are sized by your ankle and the largest part of your calf measurements. They also come in short and regular length measurements. As a physical therapist who treated people with lymphedema/swelling, I ordered compression garments for people all of the time. If not needing custom fit garments, I found Juzo to have the best product for me. Good compression stockings are more expensive than the ones in the drug store, but they fit better and aren't "one size fits all." You can also wear regular socks or stockings over them if you don't want the compression stocking look in your shoes. I've gotten really fun short socks to wear over my stockings when I wear sandals. Another brand of compression stockings that I've gotten that are more like a regular sock material are, SockWells. They come in many colors with a few different patterns. I wear these the most in the winter time because they are warmer. The major drawback is that they have a relatively narrow elastic band at the top to keep them up. It can be like having a rubber band around your upper leg at times. They come in small/medium and medium/large in accordance to your shoe size. I love them except for the elastic at the top.
It is important that you move around on a regular basis and not sit for long periods of time. Doing ankle pumps whenever you think of it when you are sitting helps to move the fluid up out of your feet and ankles and higher into your legs and body and then eventually out through your kidneys. Doing heel raises in standing while you are cooking, etc, also will help. Walking, swimming, biking - any activity where there is cyclical movement of your feet, ankles and legs. The pressure of the water against your body while you exercise in it also is very helpful in managing swelling.
I hope that I didn't add too much information, but leg swelling shouldn't be ignored. All the best in treating it to your satisfaction.
Nancy in Phila
I've had some swelling in both of my feet and ankles for many years that has gotten more persistent since being on Revlimid for induction for 8 months and now since relapse for 2 1/2 years. I wear compression stockings every day - 12-18 mg of pressure - to manage the swelling. TED stockings do not provide enough compression. You might be able to get away with the 8-12 mg of pressure stockings. I get mine through BriteLifeDirect website and order Juzo soft stockings because they have a silicone band at the top that keeps the stockings from riding down when you move in them. I get knee high stockings. They are sized by your ankle and the largest part of your calf measurements. They also come in short and regular length measurements. As a physical therapist who treated people with lymphedema/swelling, I ordered compression garments for people all of the time. If not needing custom fit garments, I found Juzo to have the best product for me. Good compression stockings are more expensive than the ones in the drug store, but they fit better and aren't "one size fits all." You can also wear regular socks or stockings over them if you don't want the compression stocking look in your shoes. I've gotten really fun short socks to wear over my stockings when I wear sandals. Another brand of compression stockings that I've gotten that are more like a regular sock material are, SockWells. They come in many colors with a few different patterns. I wear these the most in the winter time because they are warmer. The major drawback is that they have a relatively narrow elastic band at the top to keep them up. It can be like having a rubber band around your upper leg at times. They come in small/medium and medium/large in accordance to your shoe size. I love them except for the elastic at the top.
It is important that you move around on a regular basis and not sit for long periods of time. Doing ankle pumps whenever you think of it when you are sitting helps to move the fluid up out of your feet and ankles and higher into your legs and body and then eventually out through your kidneys. Doing heel raises in standing while you are cooking, etc, also will help. Walking, swimming, biking - any activity where there is cyclical movement of your feet, ankles and legs. The pressure of the water against your body while you exercise in it also is very helpful in managing swelling.
I hope that I didn't add too much information, but leg swelling shouldn't be ignored. All the best in treating it to your satisfaction.
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: Swelling in ankles and feet while taking Revlimid
Yes, my husband was put on Revlimid and dex for maintenance and was only able to take it for about 6 months after his stem cell transplant. He had several clot in his legs after the transplant and a pulmonary embolism along with severe neuropathy and swelling of the legs. He is now doing well on Pomalyst and dex, but still has the swelling and neuropathy 4 years post transplant. His doctor says the neuropathy is permanent nerve damage and he will probably have the swelling forever. This news was a real bummer!
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suearl - Name: Earl
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2011
- Age at diagnosis: 79
Re: Swelling in ankles and feet while taking Revlimid
Nancy, thank you. The information in this thread has been incredibly helpful.
I've been on Revlimid for about a year and a half now, but didn't have any swelling issues until about six weeks ago. Now I do, and my right leg swells considerably more than the left. In fact, the swelling in the right leg never goes entirely away, even when there is no appreciable swelling in the left leg. I saw my primary care doc, and he said (from the office visit and a GFR of 56) that it was my kidneys and to limit salt, fluids and wear compression stockings.
Of course, my ankles weren't swollen when I SAW him (and isn't that always the way?).
You seem to have had a great deal of experience and research into compression stockings. I hate the things. I hate stockings. I live in the California desert, the temperature is usually 100 degrees or more, and I've been a 'barefoot girl' most of my life. Hot, sweaty feet are not fun.
Are there alternatives that handle the compression WELL, and still leave the toes free?
And I'm going to BriteLifeDirect to see what they have. Thanks.
Oh, I just found "Vim&vigr," a new business that sells compression socks ... that are CUTE! With patterns and stripes, dots, and I even saw a pair of purple argyle. I ordered a pair. We'll see. If I HAVE to wear these things. By cracky, I'm going to have fun with them. Now, if I could only figure out how to hand knit compression socks, I'll be gold.
I've been on Revlimid for about a year and a half now, but didn't have any swelling issues until about six weeks ago. Now I do, and my right leg swells considerably more than the left. In fact, the swelling in the right leg never goes entirely away, even when there is no appreciable swelling in the left leg. I saw my primary care doc, and he said (from the office visit and a GFR of 56) that it was my kidneys and to limit salt, fluids and wear compression stockings.
Of course, my ankles weren't swollen when I SAW him (and isn't that always the way?).
You seem to have had a great deal of experience and research into compression stockings. I hate the things. I hate stockings. I live in the California desert, the temperature is usually 100 degrees or more, and I've been a 'barefoot girl' most of my life. Hot, sweaty feet are not fun.
Are there alternatives that handle the compression WELL, and still leave the toes free?
And I'm going to BriteLifeDirect to see what they have. Thanks.
Oh, I just found "Vim&vigr," a new business that sells compression socks ... that are CUTE! With patterns and stripes, dots, and I even saw a pair of purple argyle. I ordered a pair. We'll see. If I HAVE to wear these things. By cracky, I'm going to have fun with them. Now, if I could only figure out how to hand knit compression socks, I'll be gold.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Swelling in ankles and feet while taking Revlimid
Hi all,
Once again, I'd like to thank everyone who responded to my post. An update: I did go to my primary doctor on Thursday. She ordered a venous Doppler, which I had yesterday. Thankfully that was negative.
Dianaiad, I could have written the second paragraph in your post myself. It's also my right leg that's the problem; my left leg is really of no concern. Nancy S, I'm going to try using compression stockings to see if this will help. (Guess I'll be wearing long pants in the summer – ugh!)
What I'm wondering about is if I've now reached a time after 5 1/2 years on Revlimid that it's starting to effect me in new ways. The next time I see my myeloma specialist, I may ask him if it's time to try something else, even though the Revlimid is still working for me.
I know that you're supposed to keep on the drug until it is no longer keeping a remission, but other people have switched when side effects start to occur?
LindaO
Once again, I'd like to thank everyone who responded to my post. An update: I did go to my primary doctor on Thursday. She ordered a venous Doppler, which I had yesterday. Thankfully that was negative.
Dianaiad, I could have written the second paragraph in your post myself. It's also my right leg that's the problem; my left leg is really of no concern. Nancy S, I'm going to try using compression stockings to see if this will help. (Guess I'll be wearing long pants in the summer – ugh!)
What I'm wondering about is if I've now reached a time after 5 1/2 years on Revlimid that it's starting to effect me in new ways. The next time I see my myeloma specialist, I may ask him if it's time to try something else, even though the Revlimid is still working for me.
I know that you're supposed to keep on the drug until it is no longer keeping a remission, but other people have switched when side effects start to occur?
LindaO
-
LindaO - Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2010
- Age at diagnosis: 58
Re: Swelling in ankles and feet while taking Revlimid
Dianalad-
If you figure out how to knit compression stockings, let me know. Maybe we could start a business. There are stockings that have open toes so that you can wear sandals with them. Unfortunately I have such weird toes and feet that they are uncomfortable for me. I've gotten used to wearing the stockings in the summer. I just wear linen flowing pants to give me some air around my legs..
I treated 2 young women, both in their 20's, who had been diagnosed with breast cancer and ended up having mastectomies. Both of them developed lymphedema in their arms on the side of the cancer. Neither of them liked what was available for compression armsleeves and gloves for them. They got together and designed fun compression armsleeves and gloves. One of them was majoring in fabric design and the other had a business of her own so was savvy about starting up a business. They enlisted the expertise of our lymphedema doctor to help them with the design of the garments so that the right amount of pressure was built into the garments at the right places. The company that they created is LympheDivas. It's too bad that they didn't put their talents into developing fun stockings, too.
LindO-
I've been on Revlimid for 2 1/2 years now. I started at 15 mg a day. A 1 1/2 years later my WBC, platelets, ANC and Hgb dropped quite a bit so my oncologist dropped the dose to 10 mg after giving me a break for a month for my blood levels to recover. The 10 mg worked as well for me as the 15 mg. A few months ago I began to have some significant GI problems and then developed clots in my lungs. My Revlimid has now been dropped to 10 mg every other day. So far this new level is working to maintain my m-spike, etc, and my GI problems have begun to lessen.
It's possible that just a change in your dose might help you with your side effects while still managing your myeloma effectively.
Nancy in Phila
If you figure out how to knit compression stockings, let me know. Maybe we could start a business. There are stockings that have open toes so that you can wear sandals with them. Unfortunately I have such weird toes and feet that they are uncomfortable for me. I've gotten used to wearing the stockings in the summer. I just wear linen flowing pants to give me some air around my legs..
I treated 2 young women, both in their 20's, who had been diagnosed with breast cancer and ended up having mastectomies. Both of them developed lymphedema in their arms on the side of the cancer. Neither of them liked what was available for compression armsleeves and gloves for them. They got together and designed fun compression armsleeves and gloves. One of them was majoring in fabric design and the other had a business of her own so was savvy about starting up a business. They enlisted the expertise of our lymphedema doctor to help them with the design of the garments so that the right amount of pressure was built into the garments at the right places. The company that they created is LympheDivas. It's too bad that they didn't put their talents into developing fun stockings, too.
LindO-
I've been on Revlimid for 2 1/2 years now. I started at 15 mg a day. A 1 1/2 years later my WBC, platelets, ANC and Hgb dropped quite a bit so my oncologist dropped the dose to 10 mg after giving me a break for a month for my blood levels to recover. The 10 mg worked as well for me as the 15 mg. A few months ago I began to have some significant GI problems and then developed clots in my lungs. My Revlimid has now been dropped to 10 mg every other day. So far this new level is working to maintain my m-spike, etc, and my GI problems have begun to lessen.
It's possible that just a change in your dose might help you with your side effects while still managing your myeloma effectively.
Nancy in Phila
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
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