Hi,
I have been reading the posts on the Beacon for 3 years since my diagnosis, but am new at posting. This is really the best forum on line for multiple myeloma, and I'm glad I found it! My question is I was wondering how long patients have been on maintenance therapy for multiple myeloma. I have been in a complete remission (knock wood) for three years. I take 15mg of Revlimid 21 days on, 7 days rest period. I haven't had a stem cell transplant, although my cells were collected two years ago as a precaution. I worry that the Revlimid might cause other problems, and yes, I have read about possible secondary cancers that the drug might cause. But, if there are patients out there who have been on the drug for many years, with no problems, it would give me some relief to know this.
Thank you in advance for any info on this. And may a cure for multiple myeloma be on the horizon!
LindaO
Forums
6 posts
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LindaO - Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2010
- Age at diagnosis: 58
Re: How long on Revlimid maintenance therapy?
I reached remission - CR 4 years ago. I was diagnosed in Feb 2009. Like you I did not hag an SCT. My original protocol was 10 mg Revlimid on 21 days and off 7. I also had weekly infusions of Velcade and took 40 mg of dex orally each week in conjunction with the Velcade. In addition I got monthly infusions of Aridia.
My oncologist gradually backed down the dosages. A year ago I contracted meningitis and C diff. As a result I started monthly infusions of IVIG. He also took me off Revlimid. I just got back my FLC results and everything came back normal. My latest protocol is a Velcade shot once every 2 weeks accompanied by 8 mg of Dex. My IVIG has been changed to once every 6 weeks and the Aredia is once every 3 months.
Bottom line is I am on a maintenance protocol but have had continuous treatment for over 4 years.
I feel fine. I work full time in an office setting and am very active physically. I ride and race bicycles.
Ron
My oncologist gradually backed down the dosages. A year ago I contracted meningitis and C diff. As a result I started monthly infusions of IVIG. He also took me off Revlimid. I just got back my FLC results and everything came back normal. My latest protocol is a Velcade shot once every 2 weeks accompanied by 8 mg of Dex. My IVIG has been changed to once every 6 weeks and the Aredia is once every 3 months.
Bottom line is I am on a maintenance protocol but have had continuous treatment for over 4 years.
I feel fine. I work full time in an office setting and am very active physically. I ride and race bicycles.
Ron
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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: How long on Revlimid maintenance therapy?
I had a SCT Jan. 17th and started 10mg of Revlimid 90 days post SCT. I take it everyday with no break. They tell me its good to be on it as the stats indicate a longer remission if you do maintenance. They would like me to stay on it at least a year and possibly three years. I'm not CR just yet as I have a slight m-spike and slight elevated light chains. Numbers keep going down each month so I guess the SCT worked? Glad to hear that you guys have been in CR for so many years. Jerry.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: How long on Revlimid maintenance therapy?
Thanks for the replies. I forgot to mention that I now am getting an infusion of Zometa every 3 months. For the 1st year after my diagnosis it was every month. I asked my Dr. if we could space it out & she agreed to it. I believe in being my own advocate & asked for the lesser dose. I wonder if I could go to 10 mg of Revlimid & when I see my Dr again in August I may ask about it. I wish I didn't have to take these drugs for the rest of my life, but it seems like that's the way it has to be.
Even if I opt for a sct down the road, I'd probably still be on a maintenance dose & that's one reason, among others, that I'm holding off on the sct.
Linda O
Even if I opt for a sct down the road, I'd probably still be on a maintenance dose & that's one reason, among others, that I'm holding off on the sct.
Linda O
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LindaO - Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2010
- Age at diagnosis: 58
Re: How long on Revlimid maintenance therapy?
Regarding the duration of Revlimid. . . My personal practice is to keep patients on Revlimid as long as it is effective. There is some more recent data suggesting that the risk of secondary cancer has only been seen in patients exposed to prior melphalan (known to increase risk of secondary blood cancers) and then receiving Revlimid. So I feel that long term benefit from Revlimid outweighs risks, especially in patients without prior melphalan use.
With long term disease control, bisphosphonates (Zometa) may be able to be discontinued. I generally stop Zometa after 2 years in patients with complete responses to therapy to minimize the risk of osteonecrosis of the jaw.
With long term disease control, bisphosphonates (Zometa) may be able to be discontinued. I generally stop Zometa after 2 years in patients with complete responses to therapy to minimize the risk of osteonecrosis of the jaw.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: How long on Revlimid maintenance therapy?
Thank you, Dr, Valent for the reply. I was especially interested in that you stop Zometa after 2 years of CR. I'm going to ask my Dr. about this.
Linda O
Linda O
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LindaO - Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2010
- Age at diagnosis: 58
6 posts
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