I have had myeloma now for more than 10 years and, regretfully, my kappa light chains are beginning to soar again and treatment is not far away. I have had Velcade twice before (2008 and 2011) with good results -- that is, it was two to three years drug free before more treatment was needed. I am sort of thinking that Velcade would be the go-to again (if I get that choice), as I was looking up the side effects of Revlimid and they seem to be worse than those for Velcade.
Any comments would appreciated from people who have been on either treatment, or maybe have had both drugs in the past.
Thank you.
Forums
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redcarnation - Name: Jennifer
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2004
- Age at diagnosis: 49
Re: Velcade vs. Revlimid - how do they compare?
Hi Jennifer,
I wouldn't assume from what you've read about a drug's side effects that you definitely will get any or all of the common side effects that other people experience. People react very individually to the different myeloma therapies.
For example, in your case, based on what you've written, it seems like you haven't experienced much peripheral neuropathy (PN) from taking Velcade. Yet you'll find many people who struggle with PN after taking just a couple of cycles of the drug.
Similarly, you'll find people who have gastrointestinal issues as a result of taking Revlimid, others who get fatigue from the drug, and still others who get a rash. Yet, at the same time, you'll find a lot of people who tolerate the drug really well.
I'm not sure you want to be basing your decision about what drug to take next on the POSSIBLE side effects you might get from it. Instead, it probably makes the most sense to make the decision based on what you and your doctor think will be best for keeping your myeloma under control as long as possible.
That might well be Velcade again. But, if you doctor feels Revlimid might be best for you right now, and he/she has good arguments in favor of that approach, do you really want to say no to the recommendation based on POSSIBLE side effects you might experience while taking the drug?
Good luck!
I wouldn't assume from what you've read about a drug's side effects that you definitely will get any or all of the common side effects that other people experience. People react very individually to the different myeloma therapies.
For example, in your case, based on what you've written, it seems like you haven't experienced much peripheral neuropathy (PN) from taking Velcade. Yet you'll find many people who struggle with PN after taking just a couple of cycles of the drug.
Similarly, you'll find people who have gastrointestinal issues as a result of taking Revlimid, others who get fatigue from the drug, and still others who get a rash. Yet, at the same time, you'll find a lot of people who tolerate the drug really well.
I'm not sure you want to be basing your decision about what drug to take next on the POSSIBLE side effects you might get from it. Instead, it probably makes the most sense to make the decision based on what you and your doctor think will be best for keeping your myeloma under control as long as possible.
That might well be Velcade again. But, if you doctor feels Revlimid might be best for you right now, and he/she has good arguments in favor of that approach, do you really want to say no to the recommendation based on POSSIBLE side effects you might experience while taking the drug?
Good luck!
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JimNY
Re: Velcade vs. Revlimid - how do they compare?
Hi Red Carnation (what a nice name!). I have been on both Velcade and Revlimid, individually and not combined with other chemo except for dexamethasone.
They both have worked for me, although not without some side effects. Good that you are not allergic to any chemo drugs that you know of, yet.
Probably the sub-Q Velcade will be better for avoiding neuropathy, in case you had it by IV infusion in the past.
Revlimid is an oral drug, which is convenient.
Good luck in whatever drug you have next, and get back to us too. Would you be able to get a combination of drugs, or try something entirely new?
They both have worked for me, although not without some side effects. Good that you are not allergic to any chemo drugs that you know of, yet.
Probably the sub-Q Velcade will be better for avoiding neuropathy, in case you had it by IV infusion in the past.
Revlimid is an oral drug, which is convenient.
Good luck in whatever drug you have next, and get back to us too. Would you be able to get a combination of drugs, or try something entirely new?
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Velcade vs. Revlimid - how do they compare?
Hello Jennifer,
I started out with Revlimid 25 mg, 21 days on with 7 days off, plus dexamethasone 40 mg once per week. Then that was changed to Velcade on days 1,4,8 & 11. plus still taking the dex at 40 mg.
So here is how my treatment went. The initial Revlimid / dex was working great until I had a rash about 5 months out. It wasn't real bad, and my oncologist said to go another month with treatment and see what happens. The following month the rash came back with about 2 days left of the 21 day cycle. It covered about 60% of my body. No itching at all, but was very warm to the touch and there was a lot of swelling at my legs and ankles. At that point, the Revlimid seemed to be doing well except for the rash. My labs were improving, but seemed to be doing so at a slower pace than in the beginning.
I was then told that I would continue with the same dose of the dex, but would be starting on subQ Velcade. I have been on this treatment for about 3 months. The Velcade has really worked well. I do have a small amount of neuropathy in my feet. I hope it stays small. I have always had issues with my feet due to a very high arch, which doesn't help. I found some sandals that are for people with neuropathy and they support my arch. What a difference they have made. They are called Vionic Orthaheel.
I guess that everyone is different when it comes to treatments and reactions to drugs. Revlimid was great because I could just take a pill. But it made me very sleepy. Velcade is just four injections with 10 days off. But it has to be done at the oncologists office.
I am going to have a stem cell harvest in a few months and I was told that being on Velcade prior to harvest was much better than being on Revlimid.
Just curious, have you just been on treatments the whole time, or did you have a stem cell transplant?
Best Of Luck, Castaway
I started out with Revlimid 25 mg, 21 days on with 7 days off, plus dexamethasone 40 mg once per week. Then that was changed to Velcade on days 1,4,8 & 11. plus still taking the dex at 40 mg.
So here is how my treatment went. The initial Revlimid / dex was working great until I had a rash about 5 months out. It wasn't real bad, and my oncologist said to go another month with treatment and see what happens. The following month the rash came back with about 2 days left of the 21 day cycle. It covered about 60% of my body. No itching at all, but was very warm to the touch and there was a lot of swelling at my legs and ankles. At that point, the Revlimid seemed to be doing well except for the rash. My labs were improving, but seemed to be doing so at a slower pace than in the beginning.
I was then told that I would continue with the same dose of the dex, but would be starting on subQ Velcade. I have been on this treatment for about 3 months. The Velcade has really worked well. I do have a small amount of neuropathy in my feet. I hope it stays small. I have always had issues with my feet due to a very high arch, which doesn't help. I found some sandals that are for people with neuropathy and they support my arch. What a difference they have made. They are called Vionic Orthaheel.
I guess that everyone is different when it comes to treatments and reactions to drugs. Revlimid was great because I could just take a pill. But it made me very sleepy. Velcade is just four injections with 10 days off. But it has to be done at the oncologists office.
I am going to have a stem cell harvest in a few months and I was told that being on Velcade prior to harvest was much better than being on Revlimid.
Just curious, have you just been on treatments the whole time, or did you have a stem cell transplant?
Best Of Luck, Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Velcade vs. Revlimid - how do they compare?
I was on 25 mg doses of Velcade (along with dexamethasone) for induction therapy prior to my stem cell transplant and I've been on 10 mg doses daily for maintenance since then. So far, I've not had any ill effect whatsoever from it.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Velcade vs. Revlimid - how do they compare?
MikeF - Are you sure you didn't mean to write "Revlimid" instead of "Velcade"? The doses you mentioned seem a lot more like Revlimid doses instead of Velcade doses.
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Jonah
Re: Velcade vs. Revlimid - how do they compare?
I've basically had no side effects from 4 months of 25 mg Revlimid in induction (fall 2013) nor from 10 mg maintenance that began last summer (autologous stem cell transplant at Mayo Rochester, February 11, 2014). And it has kept my numbers in a good range. I've been fortunate, I realize.
Wesley
Wesley
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wesley - Who do you know with myeloma?: me
- When were you/they diagnosed?: July, 2013
- Age at diagnosis: 60
Re: Velcade vs. Revlimid - how do they compare?
I'm on my 9th cycle of Revlimid, and while the side effects are lessening, I still have some.
I had no side effects with Velcade aside from a small amount of neuropathy in the finger tips of my left hand. I would take Velcade again if given the opportunity.
I do believe that the reason I'm not on it is because my rise has been slow and they feel the Revlimid will suppress the protein.
I had no side effects with Velcade aside from a small amount of neuropathy in the finger tips of my left hand. I would take Velcade again if given the opportunity.
I do believe that the reason I'm not on it is because my rise has been slow and they feel the Revlimid will suppress the protein.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Velcade vs. Revlimid - how do they compare?
Thank you to all who have replied.
JimNY - Thank you for your comments. I did get peripheral neuropathy both times with the Velcade, in my feet and fingers, and by the end of both times on the Velcade I had quite numb feet and I did not like the pain. And the numbness in the fingers enabled me to break many glasses! However, over time, the pain disappeared after the Velcade stopped, but I still have some numbness in my feet after 3 years free of Velcade. Last time on Velcade, I did not take the dexamethasone (my choice), and I think I had a harder time with more side effects, i.e., high temperatures after doses, vomiting up to 8 times at times, plus the numbness. Dex is a drug I dislike intensely, as I become very cranky, no sleep or only up to 2 hours each night, no dreaming, etc.
Hi Nancy - Yes I was on the IV Velcade both times, as the hospital treating me here in Australia had not heard of the subQ Velcade or did not have it as I asked at the time. With the Revlimid, do you have to take another drug like a blood thinner as well?
Hello Castaway - In between my treatments, I have been on no medications at all for the myeloma. I did have a stem cell transplant back in August 2005, and that seemed to last up until 2008, when I again needed further treatment, which was the IV Velcade regimen and dexamethasone for 6 months. That reduced all my blood counts to 'normal'. In between treatments, I do get bone pain from my many lytic lesions, but it is not too much of a bother and my lesions are fairly stable after a recent MRI I had. I guess I have been lucky with this and I can do most things still, but I have just had to slow down and I do get very tired at times.
MikeF - You are very lucky not to have had any side effects so far with your treatment. Good Luck!
Wesley - That is great that all is working for you, best of luck to you too.
Wayne K - With the Revlimid, I will ask you too (as I did Nancy), do you take any other drugs with that?
JimNY - Thank you for your comments. I did get peripheral neuropathy both times with the Velcade, in my feet and fingers, and by the end of both times on the Velcade I had quite numb feet and I did not like the pain. And the numbness in the fingers enabled me to break many glasses! However, over time, the pain disappeared after the Velcade stopped, but I still have some numbness in my feet after 3 years free of Velcade. Last time on Velcade, I did not take the dexamethasone (my choice), and I think I had a harder time with more side effects, i.e., high temperatures after doses, vomiting up to 8 times at times, plus the numbness. Dex is a drug I dislike intensely, as I become very cranky, no sleep or only up to 2 hours each night, no dreaming, etc.
Hi Nancy - Yes I was on the IV Velcade both times, as the hospital treating me here in Australia had not heard of the subQ Velcade or did not have it as I asked at the time. With the Revlimid, do you have to take another drug like a blood thinner as well?
Hello Castaway - In between my treatments, I have been on no medications at all for the myeloma. I did have a stem cell transplant back in August 2005, and that seemed to last up until 2008, when I again needed further treatment, which was the IV Velcade regimen and dexamethasone for 6 months. That reduced all my blood counts to 'normal'. In between treatments, I do get bone pain from my many lytic lesions, but it is not too much of a bother and my lesions are fairly stable after a recent MRI I had. I guess I have been lucky with this and I can do most things still, but I have just had to slow down and I do get very tired at times.
MikeF - You are very lucky not to have had any side effects so far with your treatment. Good Luck!
Wesley - That is great that all is working for you, best of luck to you too.
Wayne K - With the Revlimid, I will ask you too (as I did Nancy), do you take any other drugs with that?
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redcarnation - Name: Jennifer
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2004
- Age at diagnosis: 49
Re: Velcade vs. Revlimid - how do they compare?
Hi Jennifer,
I was on IV Velcade in 2009 and we didn't have subcutaneous Velcade in Canada yet. It was approved here about 3 years ago I think, so that does give patients a choice. Not everyone likes the subQ though, since it seems sometimes to cause allergic runs or rashes. But the IV Velcade can cause PN to develop over time. I was only ever on it for four cycles, and only got mild neuropathy in my feet.
For the Revlimid, I have now been on doses of 15 mg, 10 mg, 5 mg for a year after my stem cell transplant. That is when I started to take low dose aspirin, 81 mg, and I have been taking that daily since 2010, even when I was on no drugs for 3 1/12 years. I have now been through three cycles of Revlimid at 25 mg, but am still taking low-dose aspirin. It works by inhibiting platelet formation at the scene of an injury. Then the 'coagulation cascade' starts, drawing in many factors from the blood, which eventually causes a clot to form. I think that when people say 'anti-coagulant' they may usually mean drugs that decrease some factor in that cascade, such as warfarin (Coumadin), or Lovenox (enoxaparin).
I know that I was not prescribed an 'anticoagulant' such as warfarin simply because I have not yet experienced having deep vein thrombosis (DVT). Lately, however, I went on a plane ride of 7 hours and, as a precaution against DVTs, took Luvenox, an anti-coagulant, by subQ injection. This was just for the plane travel, however.
Hope that helps. Sounds like you are also an 'old hand' at myeloma now, and know it's good to ask questions!
I was on IV Velcade in 2009 and we didn't have subcutaneous Velcade in Canada yet. It was approved here about 3 years ago I think, so that does give patients a choice. Not everyone likes the subQ though, since it seems sometimes to cause allergic runs or rashes. But the IV Velcade can cause PN to develop over time. I was only ever on it for four cycles, and only got mild neuropathy in my feet.
For the Revlimid, I have now been on doses of 15 mg, 10 mg, 5 mg for a year after my stem cell transplant. That is when I started to take low dose aspirin, 81 mg, and I have been taking that daily since 2010, even when I was on no drugs for 3 1/12 years. I have now been through three cycles of Revlimid at 25 mg, but am still taking low-dose aspirin. It works by inhibiting platelet formation at the scene of an injury. Then the 'coagulation cascade' starts, drawing in many factors from the blood, which eventually causes a clot to form. I think that when people say 'anti-coagulant' they may usually mean drugs that decrease some factor in that cascade, such as warfarin (Coumadin), or Lovenox (enoxaparin).
I know that I was not prescribed an 'anticoagulant' such as warfarin simply because I have not yet experienced having deep vein thrombosis (DVT). Lately, however, I went on a plane ride of 7 hours and, as a precaution against DVTs, took Luvenox, an anti-coagulant, by subQ injection. This was just for the plane travel, however.
Hope that helps. Sounds like you are also an 'old hand' at myeloma now, and know it's good to ask questions!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
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