My spouse was diagnosed in February 2013 and had his stem cell transplant in September 2013. He was on maintenance Revlimid until relapse in January 2016.
In March 2016 he started Empliciti (elotuzumab), Revlimid, and dexamethasone. Now in August he developed a blood clot in the leg. He has had his Revlimid dose lowered before, but it was not as effective. The doctor said they would lower the Revlimid dose again. It sounds like the Revlimid is going to have to be replaced with something else, but I'm not sure.
Is this normal progression for patients who are on Revlimid?
He started Xarelto (rivaroxaban) and stopped the daily aspirin.
Any information would be appreciated.
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BwestOhio - Name: Brian
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: 02/22/2013
- Age at diagnosis: 62
Re: Blood clots while on Revlimid, Empliciti, and dex
Blood clots are a common side effect of Revlimid treatment. That's why it is standard for people taking Revlimid to also take some sort of anti-clotting medication. Aspirin is the most common option in the U.S.
I believe dexamethasone increases the chances of blood clots in people taking Revlimid. This is probably why this started to be an issue with your husband even though he never had problems with clots when he was taking only Revlimid.
There are good options for preventing clots in people taking Revlimid. Aspirin is the most basic option. But there are more powerful options, such as warfarin or the Xarelto that you mentioned. I suspect that your husband's doctor wants to move away from Revlimid for reasons other than the blood clots. The doctor may feel that it isn't really doing much for your husband, probably because your husband was on Revlimid for two years.
I believe dexamethasone increases the chances of blood clots in people taking Revlimid. This is probably why this started to be an issue with your husband even though he never had problems with clots when he was taking only Revlimid.
There are good options for preventing clots in people taking Revlimid. Aspirin is the most basic option. But there are more powerful options, such as warfarin or the Xarelto that you mentioned. I suspect that your husband's doctor wants to move away from Revlimid for reasons other than the blood clots. The doctor may feel that it isn't really doing much for your husband, probably because your husband was on Revlimid for two years.
Re: Blood clots while on Revlimid, Empliciti, and dex
I can speak from personal experience on this topic. I began a Revlimid and dexamethasone regimen in January of 2014 after my free light chain numbers began creeping out of normal range. My doctor had me take one baby aspirin (81 mg) daily.
I occasionally experienced swelling in my ankles but had no pain or redness.
In late March I experienced considerable shortness s of breath climbing the stairs in my home. The next day I continued to experience shortness of breath. The light bulb finally went off and I drove myself to a local hospital in my suburban area. Within an hour the doctors at the ER determined that I had a pulmonary embolism. I was rushed to the large hospital in my city and successfully treated and release from the hospital three days later.
I had no warning until the shortness of breath.
My doctor discontinued the Revlimid. I am now on Ninlaro and also now taking Eliquis daily.
I would urge anyone taking Revlimid to be cautious. I had no history of blood clots and am fairly active.
I occasionally experienced swelling in my ankles but had no pain or redness.
In late March I experienced considerable shortness s of breath climbing the stairs in my home. The next day I continued to experience shortness of breath. The light bulb finally went off and I drove myself to a local hospital in my suburban area. Within an hour the doctors at the ER determined that I had a pulmonary embolism. I was rushed to the large hospital in my city and successfully treated and release from the hospital three days later.
I had no warning until the shortness of breath.
My doctor discontinued the Revlimid. I am now on Ninlaro and also now taking Eliquis daily.
I would urge anyone taking Revlimid to be cautious. I had no history of blood clots and am fairly active.
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indy mike - Name: Mike Mathias
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 51
Re: Blood clots while on Revlimid, Empliciti, and dex
Hi,
I too have experienced the Revlimid blood clots. I have had two, one in each leg. I have been on various doses of Lovenox (enoxaparin) since aspirin did not prevent my second one. I remain on a single 120 mg Lovenox injection (subq) every morning. My myeloma specialist does not like the oral anticoagulants for some reason.
Best! BN
I too have experienced the Revlimid blood clots. I have had two, one in each leg. I have been on various doses of Lovenox (enoxaparin) since aspirin did not prevent my second one. I remain on a single 120 mg Lovenox injection (subq) every morning. My myeloma specialist does not like the oral anticoagulants for some reason.
Best! BN
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: Blood clots while on Revlimid, Empliciti, and dex
I have also had blood clots, but they have been on the retina (central retinal vein occlusion, or CRVO). I am now on Lovenox (60 mg/ 1 x day) and aspirin.
How do you know Lovenox is working? Is it measured?
The blood seems to stay on the surface of my skin in large bruise-like patches and small bloody ones. I wonder if I am actually getting the drug into my bloodstream?
How do you know Lovenox is working? Is it measured?
The blood seems to stay on the surface of my skin in large bruise-like patches and small bloody ones. I wonder if I am actually getting the drug into my bloodstream?
Re: Blood clots while on Revlimid, Empliciti, and dex
Hi,
For me, the clots were both dissolved shortly after going on the Lovenox (enoxaparin). This was measured by ultrasound and the reduction in swelling of my lower legs.
I would ask my myeloma specialist about the retinal clots. Have they dissolved? Would a retinal scan confirm? The bruising is common, and also occasional seeping.
I truly wish I could get off, but I trust my doctor on this. Aspirin was a failure for me. Maybe one day I could go to Eliquis (apixaban). We'll see.
Best! BN
For me, the clots were both dissolved shortly after going on the Lovenox (enoxaparin). This was measured by ultrasound and the reduction in swelling of my lower legs.
I would ask my myeloma specialist about the retinal clots. Have they dissolved? Would a retinal scan confirm? The bruising is common, and also occasional seeping.
I truly wish I could get off, but I trust my doctor on this. Aspirin was a failure for me. Maybe one day I could go to Eliquis (apixaban). We'll see.
Best! BN
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: Blood clots while on Revlimid, Empliciti, and dex
Hi,
My husband is also on Lovenox (enoxaparin) twice daily because aspirin did not prevent his deep vein thromboses (DVTs) and pulmonary embolisms. He could have opted for warfarin (Coumadin), but his mother took that for several years and had required frequent blood draws to check the levels and numerous dosage adjustments due to foods she ate. Warfarin seemed like too much hassle to him.
We understand the Revlimid and dex, as well as the myeloma itself, can cause the clots. Besides the Lovenox, he wears prescription compression socks when traveling more than a couple hours. We also stop after a couple hours for him to walk a little bit.
His hematologist did not want him to take Eliquis (apixaban) when we inquired about it. Since it's a relatively new blood thinner, she didn't think enough studies had been done yet regarding its effectiveness in multiple myeloma patients.
Best wishes,
Chris M.
My husband is also on Lovenox (enoxaparin) twice daily because aspirin did not prevent his deep vein thromboses (DVTs) and pulmonary embolisms. He could have opted for warfarin (Coumadin), but his mother took that for several years and had required frequent blood draws to check the levels and numerous dosage adjustments due to foods she ate. Warfarin seemed like too much hassle to him.
We understand the Revlimid and dex, as well as the myeloma itself, can cause the clots. Besides the Lovenox, he wears prescription compression socks when traveling more than a couple hours. We also stop after a couple hours for him to walk a little bit.
His hematologist did not want him to take Eliquis (apixaban) when we inquired about it. Since it's a relatively new blood thinner, she didn't think enough studies had been done yet regarding its effectiveness in multiple myeloma patients.
Best wishes,
Chris M.
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Chris M
Re: Blood clots while on Revlimid, Empliciti, and dex
I am afraid the blood clots are part of myeloma and its treatment.
I was put on 10 mg of Revlimid and 40 mg of dex in December 2015. And I was on aspirin. I went away for New Year's and was walking on the beach. That night my leg became swollen. I just thought that I twisted my knee. (I will admit, I have always been one to "wait and see".) Within two days the swelling went down. Next thing I knew I was short of breath. Quick trip to hospital with a diagnosis of deep vein thrombosis (DVT) and pulmonary embolism (PE) clots. One week later I was still on Revlimid and dex but with Xarelto (rivaroxaban).
Good luck with your treatment and plan on some kind of blood thinner.
I was put on 10 mg of Revlimid and 40 mg of dex in December 2015. And I was on aspirin. I went away for New Year's and was walking on the beach. That night my leg became swollen. I just thought that I twisted my knee. (I will admit, I have always been one to "wait and see".) Within two days the swelling went down. Next thing I knew I was short of breath. Quick trip to hospital with a diagnosis of deep vein thrombosis (DVT) and pulmonary embolism (PE) clots. One week later I was still on Revlimid and dex but with Xarelto (rivaroxaban).
Good luck with your treatment and plan on some kind of blood thinner.
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SandyR - Name: Sandy R
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 8/1/2012
- Age at diagnosis: 59
Re: Blood clots while on Revlimid, Empliciti, and dex
Good evening,
My husband has been on Revlimid (25 mg) and dex (40 mg) since late January (plus Kyprolis since March) and was told to use Clexane (enoxaparin) every single day.
When we asked if he could use aspirin (as I saw it was common in the U.S. and my husband hates needles), the doctor said that it would not be sufficiently effective. We kind of insisted and he was clear, for him it was not a good idea. Doctors from the transplant team found that totally normal.
I have the impression that here in Europe it is the norm to use something stronger than oral anticoagulants while using Revlimid.
Hope this helps.
Kind regards,
Ivory
My husband has been on Revlimid (25 mg) and dex (40 mg) since late January (plus Kyprolis since March) and was told to use Clexane (enoxaparin) every single day.
When we asked if he could use aspirin (as I saw it was common in the U.S. and my husband hates needles), the doctor said that it would not be sufficiently effective. We kind of insisted and he was clear, for him it was not a good idea. Doctors from the transplant team found that totally normal.
I have the impression that here in Europe it is the norm to use something stronger than oral anticoagulants while using Revlimid.
Hope this helps.
Kind regards,
Ivory
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Ivory - Name: Ivory
- Who do you know with myeloma?: Dear husband, Luc
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
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