My 50 year old husband was diagnosed with kappa light chain multiple myeloma in March of 2015.
He did six cycles of Revlimid, Velcade, and dexamethasone, then started Revlimid 10 mg daily. He has been on Revlimid maintenance for one year.
Because of the doctors office and a holiday weekend, we were without Revlimid for 4 days. During that 4 days, he noticed a significant improvement in energy and overall physical condition, so he opted to stop another 3 days.
He started back on Revlimid on Monday and just says he feels like crap again and doesn't want to take it anymore.
Have others had this experience? He has a lot of fatigue that has progressively gotten worse over the last year.
Does maintenance significantly increase survival, or is it reasonable to stop maintenance then restart when numbers start to creep up? He is presently in complete response.
Quantity of life vs quality ...
Thank you. This disease stinks.
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Re: How long to do maintenance therapy?
Hi KRG,
What has been going on with your husband's kappa FLC level and kappa-lambda ratio since he's been on Revlimid maintenance?
Also, how have his IgA, IgG, and IgM levels been on maintenance?
I ask because I'm trying to get a sense if the Revlimid is continuing to improve his response. You would see that in his lab results if his kappa-lambda ratio went into the normal range, and if his immunoglobulin levels normalized as well (if they were not in the normal range before).
What has been going on with your husband's kappa FLC level and kappa-lambda ratio since he's been on Revlimid maintenance?
Also, how have his IgA, IgG, and IgM levels been on maintenance?
I ask because I'm trying to get a sense if the Revlimid is continuing to improve his response. You would see that in his lab results if his kappa-lambda ratio went into the normal range, and if his immunoglobulin levels normalized as well (if they were not in the normal range before).
Re: How long to do maintenance therapy?
Hi Terry,
Thanks for response.
All labs are in normal range.
His immunoglobulins have always been normal with no M-spike as he has light chain myeloma.
Kerri
Thanks for response.
All labs are in normal range.
His immunoglobulins have always been normal with no M-spike as he has light chain myeloma.
Kerri
Re: How long to do maintenance therapy?
It's not where his labs are now that is of interest. It is whether there has been any continuing improvement. For example, did he have an abnormal kappa-lambda ratio before he started maintenance, but now it's normal?
Also, I understand that he doesn't have an M-spike. That's why I didn't ask about it.
But his disease could have pushed one or more of his immunoglobulin (IgA, IgG, or IgM) levels below the normal level, a condition known as immunoparesis. So it would be a sign of his disease continuing to respond to treatment if his immunoglobulin levels went back into the normal range during maintenance therapy.
The same could be said, for example, about his hemoglobin level. Has it changed at all during maintenance therapy?
If all his key labs have been basically steady during maintenance, then it would be worth discussing with his doctor whether or not he can go off of maintenance therapy. If he does go off maintenance, then make sure he is treated again with Revlimid -- or even Revlimid, Velcade, and dex -- if he relapses. You want to be certain you eke out as much of a response from every available myeloma therapy as possible.
Also, I understand that he doesn't have an M-spike. That's why I didn't ask about it.
But his disease could have pushed one or more of his immunoglobulin (IgA, IgG, or IgM) levels below the normal level, a condition known as immunoparesis. So it would be a sign of his disease continuing to respond to treatment if his immunoglobulin levels went back into the normal range during maintenance therapy.
The same could be said, for example, about his hemoglobin level. Has it changed at all during maintenance therapy?
If all his key labs have been basically steady during maintenance, then it would be worth discussing with his doctor whether or not he can go off of maintenance therapy. If he does go off maintenance, then make sure he is treated again with Revlimid -- or even Revlimid, Velcade, and dex -- if he relapses. You want to be certain you eke out as much of a response from every available myeloma therapy as possible.
Re: How long to do maintenance therapy?
Hi kerrirunnergirl,
Do you know the dosage of the Revlimid he is taking? You might see if there is an opportunity to lower the dose a bit to get a better quality of life.
Lyn
Do you know the dosage of the Revlimid he is taking? You might see if there is an opportunity to lower the dose a bit to get a better quality of life.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: How long to do maintenance therapy?
Hello Kerri,
I, too, have a light chain only myeloma and I don't have an M-spike, either.
I was diagnosed in late November 2014, just a few months before your husband was diagnosed. My story is the same one, with the slight difference that it took me 8 or 9 cycles to bring my kappa and kappa-lambda ratio down to the 'normal' levels. That was partially due to the 2 months' setback caused by a nasty viral infection and high fever.
My oncologist had my medication 'taper' down to the current level by first dropping the Velcade shots and then dropping the dex 3 months later, in late October 2015. However, I could not tolerate the 15 mg x 3 weeks on of Revlimid without the dex (I developed pretty severe Revlimid rash after 10 days of it) and my dosing had to be adjusted a few times till I got stable results and I could tolerate the medication.
My kappa-lambda ratio has been stable for the last 7 months, but my kappa rose from 12.5 to about 30-33 mg/L for a while and now it has been stable around 40 for the past 5 months. I am not doing as well as your husband is, per these test results, but my oncologist wants me to stay the course and does not want to add any dex to bring the kappa down. He says that I can go on with the high kappa for a long, long time.
I am taking 20 mg Revlimid on every alternate day. It seems that your husband is taking a daily 10 mg dose and not the usual 10 mg X 3 weeks on and 1 Week off. I was on that 3-week on / 1- week off 15 mg Revlimid with the weekly dex and Velcade during the induction phase. That, too got unbearable (constant fatigue, cramps, aching muscles and a whole body soreness) towards the end of the Induction phase.
I am feeling almost normal in this 6th month of this alternate day 20 mg Revlimid. The only side effect I experience is a little drowsiness and sudden tiredness after the lunch, the day after I take the Revlimid at night. I generally manage a full active day if I am busy doing something and avoid big lunches. I experience a a little insomnia and some GI issues, but I have had those for years before I started this myeloma journey.
You may consider urging your husband's oncologist to let your husband try the 20 mg alternate day dosing as it would average the same daily 10 mg Revlimid. At least your husband should try the 10 mg Revlimid, 3 weeks on and 1 week off, which seems to be what many others on the Beacon are on.
The only other dosing I have read here is 14 days on and 14 days off. The alternate day dosing like mine is fairly uncommon and so is this daily 10 mg Revlimid. During the trial and error phase, I was on the 3 weeks on and 1 week off of 10 mg Revlimid and I did get your husband's symptoms after the first week of the 3 Weeks on. I hope your husband's oncologist agrees to change his daily dose and your husband starts feeling energetic and 'normal' soon.
And all of us would readily agree: This disease stinks.
I, too, have a light chain only myeloma and I don't have an M-spike, either.
I was diagnosed in late November 2014, just a few months before your husband was diagnosed. My story is the same one, with the slight difference that it took me 8 or 9 cycles to bring my kappa and kappa-lambda ratio down to the 'normal' levels. That was partially due to the 2 months' setback caused by a nasty viral infection and high fever.
My oncologist had my medication 'taper' down to the current level by first dropping the Velcade shots and then dropping the dex 3 months later, in late October 2015. However, I could not tolerate the 15 mg x 3 weeks on of Revlimid without the dex (I developed pretty severe Revlimid rash after 10 days of it) and my dosing had to be adjusted a few times till I got stable results and I could tolerate the medication.
My kappa-lambda ratio has been stable for the last 7 months, but my kappa rose from 12.5 to about 30-33 mg/L for a while and now it has been stable around 40 for the past 5 months. I am not doing as well as your husband is, per these test results, but my oncologist wants me to stay the course and does not want to add any dex to bring the kappa down. He says that I can go on with the high kappa for a long, long time.
I am taking 20 mg Revlimid on every alternate day. It seems that your husband is taking a daily 10 mg dose and not the usual 10 mg X 3 weeks on and 1 Week off. I was on that 3-week on / 1- week off 15 mg Revlimid with the weekly dex and Velcade during the induction phase. That, too got unbearable (constant fatigue, cramps, aching muscles and a whole body soreness) towards the end of the Induction phase.
I am feeling almost normal in this 6th month of this alternate day 20 mg Revlimid. The only side effect I experience is a little drowsiness and sudden tiredness after the lunch, the day after I take the Revlimid at night. I generally manage a full active day if I am busy doing something and avoid big lunches. I experience a a little insomnia and some GI issues, but I have had those for years before I started this myeloma journey.
You may consider urging your husband's oncologist to let your husband try the 20 mg alternate day dosing as it would average the same daily 10 mg Revlimid. At least your husband should try the 10 mg Revlimid, 3 weeks on and 1 week off, which seems to be what many others on the Beacon are on.
The only other dosing I have read here is 14 days on and 14 days off. The alternate day dosing like mine is fairly uncommon and so is this daily 10 mg Revlimid. During the trial and error phase, I was on the 3 weeks on and 1 week off of 10 mg Revlimid and I did get your husband's symptoms after the first week of the 3 Weeks on. I hope your husband's oncologist agrees to change his daily dose and your husband starts feeling energetic and 'normal' soon.
And all of us would readily agree: This disease stinks.
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: How long to do maintenance therapy?
I am the same, kappa light chain, which started in December 2016. I completed 4 cycles of Revlimid, dexamethasone, and Velcade, after which everything went into a normal state with no trace of the disease. My neuropathy got really bad, so I stopped. My doctor recommended a stem cell transplant since I was clean. I completed the transplant in May of 2017. I am on my 4th month straight of 10 mg Revlimid maintenance. I was off for 20 days during this time frame due to dental implants being put in.
During this time I felt great and had no issues, pain, or neuropathy. I have been back on for a month now and drop in the afternoon between 3-4 every day. I have some back pain, and bowels are hit and miss. Several people I know are on 3 weeks on / 1 week off, and I asked my oncologist about this and was told that this is not the recommended dosage and that I need to be on every day. They told me I would need to be on maintenance for about 2 years. I am going to bring up this information up on my next appointment and see if I can go on 3 on, 1 off. Some say they need the week to recover, and others say its worse.
During this time I felt great and had no issues, pain, or neuropathy. I have been back on for a month now and drop in the afternoon between 3-4 every day. I have some back pain, and bowels are hit and miss. Several people I know are on 3 weeks on / 1 week off, and I asked my oncologist about this and was told that this is not the recommended dosage and that I need to be on every day. They told me I would need to be on maintenance for about 2 years. I am going to bring up this information up on my next appointment and see if I can go on 3 on, 1 off. Some say they need the week to recover, and others say its worse.
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zzbro - Name: Michael Zebrow
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2106
- Age at diagnosis: 56
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