After a stem cell transplant in August 2017, I relapsed fairly quickly. By May 2018 I was prescribed a regimen of Revlimid (25 mg 21/28), Ninlaro (4 mg weekly), and dexamethasone (40 mg weekly). This has worked really well and, apart from some fatigue, with no major side effects. I am able to keep active and regularly cycle 100+ miles a week. Bloods are looking good with no signs of any peripheral damage to liver, kidneys etc, and calcium levels are fine. My paraprotein numbers are low and stable, although haemoglobin is suppressed at 120.
I am now being switched to maintenance doses and my dex has been progressively reduced to 20 mg weekly, and starting next week Revlimid will be reduced to 15 mg.
My question is how sustainable are these doses long term? Obviously I am hoping for relief from fatigue but also long term remission with a decent quality of life.
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Re: Revlimid, Ninlaro & dexamethasone sustainable doses?
Rory,
Your question is difficult to answer as everyone is different. However, since we are both avid cyclists and therefore are in relatively good physical shape, my experience may be illustrative.
I did not go through the autologous stem cell transplant process but opted for induction with Velcade, Revlimid, and dexamethasone (VRD) back in 2009. I have been under some form of treatment continuously for 10 years. Through that time frame, dexamethasone and Velcade have been the constant. I was taken off of Revlimid between July 2012 until early 2016, but it has been reintroduced as my numbers started to climb. The Velcade+dex was at one point reduced to a Velcade shot once every 2 weeks accompanied by 8 mg ofdDex. However, once my numbers started to climb, the treatment was ratcheted up to where I am almost on the same regimen I had 10 years ago. Now it is a weekly Velcade shot accompanied by 20 mg of dex and Revlimid at 10 mg per day on 21 days and off 7. I have noticed a drop in my bike performance with this increase but like you still average over 100 miles a week. (I did just under 6,000 miles last year.). The dex is the roughest on me, especially when all 3 drugs are being used together. (I get my Velcade shot on Wednesday and take the dex with Revlimid that evening.)
I have experienced some gastrointestinal issues and have to take Imodium (loperamide) to counter it. I noticed that I have to lay off of fatty foods and red meat. I generally don't ride on Thursdays and Friday but am back on the bike Saturday and Sunday. The VRD has been milked to a point that it is becoming less effective, so I fully expect a change in the treatment protocol this coming year. Some patients' side effects are so bad that they have to be taken off one or more of the drugs. So far my side effects are not real serious and I have just learned to adapt.
Your question is difficult to answer as everyone is different. However, since we are both avid cyclists and therefore are in relatively good physical shape, my experience may be illustrative.
I did not go through the autologous stem cell transplant process but opted for induction with Velcade, Revlimid, and dexamethasone (VRD) back in 2009. I have been under some form of treatment continuously for 10 years. Through that time frame, dexamethasone and Velcade have been the constant. I was taken off of Revlimid between July 2012 until early 2016, but it has been reintroduced as my numbers started to climb. The Velcade+dex was at one point reduced to a Velcade shot once every 2 weeks accompanied by 8 mg ofdDex. However, once my numbers started to climb, the treatment was ratcheted up to where I am almost on the same regimen I had 10 years ago. Now it is a weekly Velcade shot accompanied by 20 mg of dex and Revlimid at 10 mg per day on 21 days and off 7. I have noticed a drop in my bike performance with this increase but like you still average over 100 miles a week. (I did just under 6,000 miles last year.). The dex is the roughest on me, especially when all 3 drugs are being used together. (I get my Velcade shot on Wednesday and take the dex with Revlimid that evening.)
I have experienced some gastrointestinal issues and have to take Imodium (loperamide) to counter it. I noticed that I have to lay off of fatty foods and red meat. I generally don't ride on Thursdays and Friday but am back on the bike Saturday and Sunday. The VRD has been milked to a point that it is becoming less effective, so I fully expect a change in the treatment protocol this coming year. Some patients' side effects are so bad that they have to be taken off one or more of the drugs. So far my side effects are not real serious and I have just learned to adapt.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Revlimid, Ninlaro & dexamethasone sustainable doses?
Thanks for your insight Ron. Just to be clear, I was trying to understand whether the proposed regimen of Revlimid 15 mg daily 21/28, Ninlaro 4 mg weekly 3/4, and dex 20 mg weekly would be sustainable long term without causing me any peripheral problems (assuming it keeps the myeloma under control of course!). You are right of course that it is difficult to answer because this is an individual issue, however given that I have done a year or so of much higher doses without serious side effects and my bloods are pretty good apart from haemoglobin, then is there a general view that a reasonably healthy person can survive the maintenance doses long term?
Keep those pedals turning. I have just come off my turbo trainer after a one hour session.
Keep those pedals turning. I have just come off my turbo trainer after a one hour session.
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Rory - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Dec2015
- Age at diagnosis: 65
Re: Revlimid, Ninlaro & dexamethasone sustainable doses?
Rory,
Based on my personal experience with a similar protocol, the answer is yes. You can be on it for a long period of time and tolerate it. Both Velcade and Ninlaro are proteasome inhibitors. Velcade is linked more often to peripheral neuropathy. I personally have not had an issue with it, and it sounds like you have not had that issue with Ninlaro. Revlimid has less links to peripheral neuropathy but has had other side effects. As is often the case, some side effects show up later after extensive use. You just have to see how it goes.
Based on my personal experience with a similar protocol, the answer is yes. You can be on it for a long period of time and tolerate it. Both Velcade and Ninlaro are proteasome inhibitors. Velcade is linked more often to peripheral neuropathy. I personally have not had an issue with it, and it sounds like you have not had that issue with Ninlaro. Revlimid has less links to peripheral neuropathy but has had other side effects. As is often the case, some side effects show up later after extensive use. You just have to see how it goes.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
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