My left leg is swollen, quite a bit, although not painful. I had an ultrasound (Doppler) which confirmed that it was caused by a deep vein thrombosis (DVT). My family doctor prescribed a blood thinner (Xarelto) and is questioning if I should stay on Revlimid. My oncologist thinks I should.
I have been on Revlimid maintainance for a year and a half (m-spike steady at 0.2) I'm looking for other opinions.
thanks,
Coach Hoke
Forums
Re: Deep vein thrombosis (DVT) while on Revlimid
I also had a blood clot on Revlimid. I am on Coumadin for past 4 years and it is all worth it.
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Cscheiner
Re: Deep vein thrombosis (DVT) while on Revlimid
My Cardiologist put me warfarin, so my INR could be controlled more accurately. He was concerned about a stroke while I was on Revlimid. I was previously on Xarelto.
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Joyce860519
Re: Deep vein thrombosis (DVT) while on Revlimid
I have been on warfarin for over 20 years due to a blood clot and pulmonary embolism, and I have had no problems of this type since then. I have been on Revlimid maintenance therapy now for almost three years. I don't worry about the blood clot risk associated with Revlimid since I'm taking Warfarin. Neither my family doctor nor oncologist have raised this concern.
Maybe you can suggest that your two doctors have a conversation with each other on this issue, rather than putting you in the middle on this question -- you know, a "team" approach.
Maybe you can suggest that your two doctors have a conversation with each other on this issue, rather than putting you in the middle on this question -- you know, a "team" approach.
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Norm - Name: Norm
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Aug-2010
- Age at diagnosis: 59
Re: Deep vein thrombosis (DVT) while on Revlimid
So it appears that nobody reccommends quitting Revlimid due to blood clots (just take blood thinners)?
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Deep vein thrombosis (DVT) while on Revlimid
Were you on an aspirin a day regimen before the clot? I take a "baby aspirin" along with the Revlimid to try to prevent having a DVT.
I would keep taking the Revlimid unless I had multiple episodes of clots despite the blood thinners.
I would keep taking the Revlimid unless I had multiple episodes of clots despite the blood thinners.
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Tom184 - Name: Tom
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: January 2011
- Age at diagnosis: 64
Re: Deep vein thrombosis (DVT) while on Revlimid
Thanks Tom. Yes I was taking the baby aspirin along with the Revlimid (no other medications, no dex,etc.)
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Deep vein thrombosis (DVT) while on Revlimid
Thanks Coach. Interesting for me to know that you got the clot despite the aspirin.
I hope all goes well.
Tom
I hope all goes well.
Tom
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Tom184 - Name: Tom
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: January 2011
- Age at diagnosis: 64
Re: Deep vein thrombosis (DVT) while on Revlimid
My husband started Revlimid / dexamethasone in June 2006. Had blood clot in left leg in 2010 – pretty darn serious. He continued on Revlimid / dex until 2011. It lowered M spike from 7.0 to 0.02, never quite to zero.
Doctor combined warfarin (Coumadin) with Revlimid / dex after blood clot. We found warfarin a necessary hassle (weekly blood tests and dose adjustments), but more nuisance than anything else.
When Revlimid stopped working its magic, we moved to carfilzomib [Kyproliis] and now pomalidomide [Pomalyst]. Husband no longer takes warfarin, takes full aspirin daily and we know to watch for symptoms of DVT. Husband is doing AOK after 8 years since diagnosis and has had no stem cell transplant, though he was eligible. M-spike hovers at .03 to .04.
My husband was diagnosed at age 74! He still runs his contracting business full time; his main complaint over the past 8 years has been neuropathy in feet. We have had very satisfactory medical care, except ... I wish that someone had warned us, early on, to watch for signs of neuropathy. But perhaps this was not a focus 8 years ago.
Once it (neuropathy) gets its grip, there is no turning back. It is only a side effect, but it is a significant one. We'd encourage every patient to ask about neuropathy if your doctor does not discuss with you.
I hope this post gives some positive input, especially for older myeloma patients.
We wish all of you All The Best - more than I can adequately express. God Bless!
PS: Yes, Hub was on low-dose aspirin before the clot.
Doctor combined warfarin (Coumadin) with Revlimid / dex after blood clot. We found warfarin a necessary hassle (weekly blood tests and dose adjustments), but more nuisance than anything else.
When Revlimid stopped working its magic, we moved to carfilzomib [Kyproliis] and now pomalidomide [Pomalyst]. Husband no longer takes warfarin, takes full aspirin daily and we know to watch for symptoms of DVT. Husband is doing AOK after 8 years since diagnosis and has had no stem cell transplant, though he was eligible. M-spike hovers at .03 to .04.
My husband was diagnosed at age 74! He still runs his contracting business full time; his main complaint over the past 8 years has been neuropathy in feet. We have had very satisfactory medical care, except ... I wish that someone had warned us, early on, to watch for signs of neuropathy. But perhaps this was not a focus 8 years ago.
Once it (neuropathy) gets its grip, there is no turning back. It is only a side effect, but it is a significant one. We'd encourage every patient to ask about neuropathy if your doctor does not discuss with you.
I hope this post gives some positive input, especially for older myeloma patients.
We wish all of you All The Best - more than I can adequately express. God Bless!
PS: Yes, Hub was on low-dose aspirin before the clot.
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SiouxCity
Re: Deep vein thrombosis (DVT) while on Revlimid
My husband was put on baby aspirin when he began carfilzomib [Kyprolis] / Revlimid / dexamethasone (clinical trial for NDMM) and within 6 months he had a DVT.
His hematologist / oncologist then prescribed Lovenox injections twice daily. I think he was on Lovenox roughly a year before going back to baby aspirin after he had no further clots. Plus, the doctor said the biggest risk seemed to be early during treatment because the multiple myeloma itself, besides the Revlimid and dexamethasone, can contribute to clots.
My husband, 61, travels quite a bit for work, so he also has a prescription for compression stockings to wear when he travels. He wears them faithfully when he travels, plus gets out and walks around every couple hours when he's driving.
Like Sioux City's husband, mine is also having problems with worsening neuropathy, so this cycle the doctor said to stop the Revlimid (he's just on Revlimid maintenance now). If he sees some reduction in the neuropathy, he'll probably start a reduced dose of Revlimid. If not, they'll reassess if he needs a longer vacation from the Revlimid and hopefully that will help alleviate it.
Wishing everyone battling multiple myeloma & their families all the best,
Chris M.
His hematologist / oncologist then prescribed Lovenox injections twice daily. I think he was on Lovenox roughly a year before going back to baby aspirin after he had no further clots. Plus, the doctor said the biggest risk seemed to be early during treatment because the multiple myeloma itself, besides the Revlimid and dexamethasone, can contribute to clots.
My husband, 61, travels quite a bit for work, so he also has a prescription for compression stockings to wear when he travels. He wears them faithfully when he travels, plus gets out and walks around every couple hours when he's driving.
Like Sioux City's husband, mine is also having problems with worsening neuropathy, so this cycle the doctor said to stop the Revlimid (he's just on Revlimid maintenance now). If he sees some reduction in the neuropathy, he'll probably start a reduced dose of Revlimid. If not, they'll reassess if he needs a longer vacation from the Revlimid and hopefully that will help alleviate it.
Wishing everyone battling multiple myeloma & their families all the best,
Chris M.
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Chris M
17 posts
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