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How long can you stay on treatment?
How long can you theoretically stay on treatment? I know there are some toxicities to take under consideration. We are on CyBorD, and entering our 5th/6th cycle. I haven't asked how many more cycles we expect to get, but I am wondering how many cycles can the body take? So far, the only side effects we have are hiccups from the Dex.
Re: How long can you stay on treatment?
Your question is not easily answered. In my case, I have been on continuous treatment since I was diagnosed in Feb 2009. The treatment has been modified, but has been continuous.
When I was first diagnosed, I was put on a protocal of RVD (10 mg Revlimid, 21 days on, 7 days off, once a week infusion of Velcade, and once a week oral 40mg of dex) and Aredia once a month. That protocol lasted about a year, and then was backed down gradually over time. The Velcade was moved to a subcutaneous shot and was reduced to once every 2 weeks and in July 2012 the Revlimid was dropped.
Eventually about 2 years ago I was down to where I am today with a shot of Velcade once every 2 weeks, 8 mg of dex every 2 weeks, and Aredia once every 3 months. So I would classify this a slow back down of treatment to a maintenance level, but never a chemo holiday.
I negotiated with my oncologist for the reductions over time. So it has now been a little over 5 years and I am maintaining a remissive - low-level stable position. I have led an active life style, work full time, and am an avid cyclists averaging over 4,000 miles on my bike each year since I was diagnosed.
I never had a stem cell transplant and was originally diagnosed at Stage II, IgG kappa light chain multiple myeloma.
Some people have had trouble with peripheral neuropathy on Velcade. I never had any issues with it. The dex is the only drug that has given me any real side effect issues, but nothing real severe. With the dex now at 8 mg every 2 weeks, my side effects are far less of an issue than they were when I was on 40 mg every week.
Ron
When I was first diagnosed, I was put on a protocal of RVD (10 mg Revlimid, 21 days on, 7 days off, once a week infusion of Velcade, and once a week oral 40mg of dex) and Aredia once a month. That protocol lasted about a year, and then was backed down gradually over time. The Velcade was moved to a subcutaneous shot and was reduced to once every 2 weeks and in July 2012 the Revlimid was dropped.
Eventually about 2 years ago I was down to where I am today with a shot of Velcade once every 2 weeks, 8 mg of dex every 2 weeks, and Aredia once every 3 months. So I would classify this a slow back down of treatment to a maintenance level, but never a chemo holiday.
I negotiated with my oncologist for the reductions over time. So it has now been a little over 5 years and I am maintaining a remissive - low-level stable position. I have led an active life style, work full time, and am an avid cyclists averaging over 4,000 miles on my bike each year since I was diagnosed.
I never had a stem cell transplant and was originally diagnosed at Stage II, IgG kappa light chain multiple myeloma.
Some people have had trouble with peripheral neuropathy on Velcade. I never had any issues with it. The dex is the only drug that has given me any real side effect issues, but nothing real severe. With the dex now at 8 mg every 2 weeks, my side effects are far less of an issue than they were when I was on 40 mg every week.
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 can you stay on treatment?
Thanks for your response.
From my understanding thus far, it appears that toxicity is not as much as an issue as I previously has thought, given the targeted therapies of many of the new drugs?
From my understanding thus far, it appears that toxicity is not as much as an issue as I previously has thought, given the targeted therapies of many of the new drugs?
Re: How long can you stay on treatment?
Here is a Greek study with respect to patients ability to take never ending cycles of lenalidomide and dex.
"Adverse events were reported in 68.9 % of patients (myelosuppression in 49.4 %) and 12.7 % of patients needed hospitalization. Peripheral neuropathy was observed only in 2.5 % of patients and deep vein thrombosis in 5.7 %. Dose reductions were needed in 31 % of patients and permanent discontinuation in 38.9 %. Median time to treatment discontinuation was 16.8 months. Performance status (PS) and initial lenalidomide dose predicted for treatment discontinuation."
http://link.springer.com/article/10.1007%2Fs00277-013-1841-y
IMO the novel agents should not be viewed as "targeted therapies". They all have significant side effect profiles.
Moderator's Note: The study Mark mentions above is discussed in this Beacon news article,
"Study Finds Revlimid-Dexamethasone Is Effective And Safe For Relapsed/Refractory Myeloma In ‘The Real World’"
"Adverse events were reported in 68.9 % of patients (myelosuppression in 49.4 %) and 12.7 % of patients needed hospitalization. Peripheral neuropathy was observed only in 2.5 % of patients and deep vein thrombosis in 5.7 %. Dose reductions were needed in 31 % of patients and permanent discontinuation in 38.9 %. Median time to treatment discontinuation was 16.8 months. Performance status (PS) and initial lenalidomide dose predicted for treatment discontinuation."
http://link.springer.com/article/10.1007%2Fs00277-013-1841-y
IMO the novel agents should not be viewed as "targeted therapies". They all have significant side effect profiles.
Moderator's Note: The study Mark mentions above is discussed in this Beacon news article,
"Study Finds Revlimid-Dexamethasone Is Effective And Safe For Relapsed/Refractory Myeloma In ‘The Real World’"
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Mark
Re: How long can you stay on treatment?
Ron Harvot wrote: "Your question is not easily answered. In my case, I have been on continuous treatment since I was diagnosed in Feb 2009. The treatment has been modified, but has been continuous."
Ron, thanks so much for your post. I am 66 and was diagnosed with smoldering myeloma one year ago. Mine was a kappa light chain elevation. 6 months ago my light chains went to 1000 and my creatinine started to rise and my myeloma doctor began treatment with Velcade/Cytoxan/dex. I have had 3 rounds and my light chains have come down and creatinine as well.
I asked him about the possibility of a transplant in the future. He said he wouldn't totally rule it out, but leans towards long term maintenance therapy. I really haven't had too many side effects except for insomnia and muscle wasting from the dex. He wants me to have one or possibly two more rounds of therapy at this level and then work out a maintenance therapy for me.
I was so happy to see your post of someone on maintenance therapy for a while. Is that your plan long term or are you waiting to see if a transplant is recommended?
Ron, thanks so much for your post. I am 66 and was diagnosed with smoldering myeloma one year ago. Mine was a kappa light chain elevation. 6 months ago my light chains went to 1000 and my creatinine started to rise and my myeloma doctor began treatment with Velcade/Cytoxan/dex. I have had 3 rounds and my light chains have come down and creatinine as well.
I asked him about the possibility of a transplant in the future. He said he wouldn't totally rule it out, but leans towards long term maintenance therapy. I really haven't had too many side effects except for insomnia and muscle wasting from the dex. He wants me to have one or possibly two more rounds of therapy at this level and then work out a maintenance therapy for me.
I was so happy to see your post of someone on maintenance therapy for a while. Is that your plan long term or are you waiting to see if a transplant is recommended?
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fetalsono - Age at diagnosis: 66
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