Hello everyone.
I have not found a topic speaking about the choice of reducing doses so I'd like to start this one up
My mother is on 25 mg Revlimid + 40 mg dexamethasone. She's responding well and is near a very good partial response (VGPR) after only 4 cycles out of 18.
However, she complains about fatigue and strong GI issues and I feel she is depressed because she cannot live a normal life. She is only 65 and yet this treatment is preventing her from doing what she wants due to the side effects.
So my question is: Is it reasonable to ask for the doses to be reduced to 15 mg Revlimid and 20 mg dex? Does a reduction of doses necessarily mean less effectiveness? A risk of her relapsing because the dose is not enough?
I'd really like her to lead a semi-normal life, but I don't want to take the risk of suggesting something dangerous for her (reducing the doses).
What are your thoughts?
Many thanks and wishing you all well,
Maro
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Reducing doses of Revlimid & dexamethasone
If I'm not mistaken, your mother is currently enrolled in a clinical trial. Trials have protocols for dose reductions based on the occurrence of side effects and other issues. You and your mother should make her doctors aware of the side effects she is experiencing, and they can decide whether or not a dose reduction is appropriate given the trial protocol. If you're not happy with the protocol because, for example, you feel a dose reduction should be made, you have the option of dropping out of the trial.
Yes, the risk with dropping the dose and/or dose frequency is the risk that the treatment won't have as deep a response. There is a reason doctors like to use the highest dose that doesn't cause intolerable side effects. The issue is less critical these days, however, particularly with medications such as Revlimid, which (rightly or wrongly) are given for extended periods of time, allowing plenty of time for them to reach their full level of effectiveness.
Best of luck to you and your mother.
Yes, the risk with dropping the dose and/or dose frequency is the risk that the treatment won't have as deep a response. There is a reason doctors like to use the highest dose that doesn't cause intolerable side effects. The issue is less critical these days, however, particularly with medications such as Revlimid, which (rightly or wrongly) are given for extended periods of time, allowing plenty of time for them to reach their full level of effectiveness.
Best of luck to you and your mother.
Re: Reducing doses of Revlimid & dexamethasone
Thank you for your reply. Yes she is in a clinical trial of Revlimid + dex vs Revlimid, dex, and daratumumab.
However, the doctor did once mention that dose reductions were possible, so I wanted to make sure if such an option would be a good idea or not.
The question is to know whether or not it is risky to do so. On one hand it will improve her quality of life, but on the other ...
However, the doctor did once mention that dose reductions were possible, so I wanted to make sure if such an option would be a good idea or not.
The question is to know whether or not it is risky to do so. On one hand it will improve her quality of life, but on the other ...
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Reducing doses of Revlimid & dexamethasone
Maro,
I'm sorry your mom isn't feeling well. Your doctor should be able to help her with the issues that you've listed! You might also consider adding a nutritionist and a psychologist to her care team.
Good luck,
Lyn
I'm sorry your mom isn't feeling well. Your doctor should be able to help her with the issues that you've listed! You might also consider adding a nutritionist and a psychologist to her care team.
Good luck,
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: Reducing doses of Revlimid & dexamethasone
I think that Terry and Lyn gave you excellent responses, just my thought.
For whatever reason, my wife has been on 20 mg of dex. So instead of first reducing both of them, try and maybe just do the dex first, going down to 20 mg. Keep the Revlimid while the responses are still showing a reduction, and hold off on dropping dex until you get to a maintenance phase.
Regards, JPC
For whatever reason, my wife has been on 20 mg of dex. So instead of first reducing both of them, try and maybe just do the dex first, going down to 20 mg. Keep the Revlimid while the responses are still showing a reduction, and hold off on dropping dex until you get to a maintenance phase.
Regards, JPC
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JPC - Name: JPC
Re: Reducing doses of Revlimid & dexamethasone
Maro, is your mother experiencing sleeplessness with the dex? This was a real problem for me when I did my induction chemo in 2009. For some reason I did not want to take any sleep aids.
Now that I am dex again (20 mg), and also 25 mg of Revlimid (21 out of 28 days), I am taking a prescription medication called trazodone (50 mg) two nights a week. This really helps me to get a good night's sleep and helps my mental outlook. (Apparently trazadone has an anti-depressive effect too.) Both my oncologist and my family doctor (who prescribes it to me) are fine with me using it. It was recommended to me by a neurologist who sees a lot of patients with sleep disorders.
Revlimid was not available at all in Canada in 2009, and even now is not used for first line therapy. Hopefully it may be approved for first line therapy for 'transplant ineligible' patients though. Velcade was my first line therapy. That may be the same situation in France.
Hope that helps, and best wishes to both of you.
Now that I am dex again (20 mg), and also 25 mg of Revlimid (21 out of 28 days), I am taking a prescription medication called trazodone (50 mg) two nights a week. This really helps me to get a good night's sleep and helps my mental outlook. (Apparently trazadone has an anti-depressive effect too.) Both my oncologist and my family doctor (who prescribes it to me) are fine with me using it. It was recommended to me by a neurologist who sees a lot of patients with sleep disorders.
Revlimid was not available at all in Canada in 2009, and even now is not used for first line therapy. Hopefully it may be approved for first line therapy for 'transplant ineligible' patients though. Velcade was my first line therapy. That may be the same situation in France.
Hope that helps, and best wishes to both of you.
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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: Reducing doses of Revlimid & dexamethasone
If your mother's oncologist has said that dose adjustments are allowable in the clinical trial she is on, make sure that you speak to him about what can be done. It is always important that side effects of any kind are reported to your mother's oncologist. I have had several dose adjustments over the years based on side effects that I've experienced.
In 2009 I started with Revlimid 15 mg 21 days on/7 days off and 40 mg of dex once a week. I had a lot of problems with muscle cramping that was 10/10 pain and would last for up to 15 minutes at a time in cycles during the night. I assumed it was from the dex because it would happen a couple of days after my weekly dex dose, but it could also have been from the Revlimid, or the combination of the two. The other problem that I had was sleeplessness for 2 nights a week after my dex dose and then crashing on the 3rd day.
When I relapsed in 2012 I restarted on Revlimid 15 mg 21/7 and a reduced dose of dex at 20 mg once a week because I had told my doctor that I couldn't tolerate 40 mg. I did well on that regimen until 2014, when my blood levels dropped too low. I took a one-month break from the Revlimid to allow my blood levels to recuperate. Which they did.
My Revlimid dose was then lowered to 10 mg 21/7. All during this time my M-spike remained stable even with the changes in dosing. Then, early in 2015, I started having serious GI problems which were also complicated by the fact that i developed C. diff from an antibiotic that my dentist had prescribed for a tooth infection. My oncologist suggested that I use Imodium (loperamide) when needed, and I also got treated for the C. diff.
Now that the C. diff is resolved, I still have GI problems that I manage fairly well with Imodium the couple of times a week that I need it. In May of 2015 I developed clots in my lungs even though I had been taking a full strength aspirin prophylactically all of this time. My oncologist then lowered my Revlimid dose to 10 mg every other day while keeping my dex at 20 mg. My M-spike and all of my other blood test numbers continued to remain stable with this new dosing regimen.
Then In September of 2015 I started having side effects from long-term dex use - chronic, severe swelling in my lower legs that limited my ability to move and were really uncomfortable. At that time my oncologist gave me the choice of lowering my dex dose again and raising my Revlimid dose back to 10 mg daily. He asked me which of the side effects – the Gi problems or the leg swelling – was I more able to deal with, and which was interfering with my life the most. Dropping the dex completely was out of the question as far as he was concerned.
So, I chose dropping the dex to 12 mg once a week and raising the Revlimid back up to 10 mg 21/7. My M-spike has gone up a little since the last change in dosing, but again it is stable at its new level. The swelling has resolved and the GI problems haven't gotten any worse.
Bottom line is that you won't know what a change in dosing will do to the control of your mother's myeloma until it is tried. But, I assume that your mother is monitored on a relatively frequent basis. If so, then her oncologist will make further adjustments as needed fairly quickly.
The caveat to all of this is that your mother's oncologist needs to be made aware of any, and all, problems and any, and all, positive changes. The blood tests only tell part of the picture. The rest is up to us to keep our oncologist informed as to how we are doing and how we are feeling.
A long answer, but I hope it helps going forward for your mother.
Nancy in Phila
In 2009 I started with Revlimid 15 mg 21 days on/7 days off and 40 mg of dex once a week. I had a lot of problems with muscle cramping that was 10/10 pain and would last for up to 15 minutes at a time in cycles during the night. I assumed it was from the dex because it would happen a couple of days after my weekly dex dose, but it could also have been from the Revlimid, or the combination of the two. The other problem that I had was sleeplessness for 2 nights a week after my dex dose and then crashing on the 3rd day.
When I relapsed in 2012 I restarted on Revlimid 15 mg 21/7 and a reduced dose of dex at 20 mg once a week because I had told my doctor that I couldn't tolerate 40 mg. I did well on that regimen until 2014, when my blood levels dropped too low. I took a one-month break from the Revlimid to allow my blood levels to recuperate. Which they did.
My Revlimid dose was then lowered to 10 mg 21/7. All during this time my M-spike remained stable even with the changes in dosing. Then, early in 2015, I started having serious GI problems which were also complicated by the fact that i developed C. diff from an antibiotic that my dentist had prescribed for a tooth infection. My oncologist suggested that I use Imodium (loperamide) when needed, and I also got treated for the C. diff.
Now that the C. diff is resolved, I still have GI problems that I manage fairly well with Imodium the couple of times a week that I need it. In May of 2015 I developed clots in my lungs even though I had been taking a full strength aspirin prophylactically all of this time. My oncologist then lowered my Revlimid dose to 10 mg every other day while keeping my dex at 20 mg. My M-spike and all of my other blood test numbers continued to remain stable with this new dosing regimen.
Then In September of 2015 I started having side effects from long-term dex use - chronic, severe swelling in my lower legs that limited my ability to move and were really uncomfortable. At that time my oncologist gave me the choice of lowering my dex dose again and raising my Revlimid dose back to 10 mg daily. He asked me which of the side effects – the Gi problems or the leg swelling – was I more able to deal with, and which was interfering with my life the most. Dropping the dex completely was out of the question as far as he was concerned.
So, I chose dropping the dex to 12 mg once a week and raising the Revlimid back up to 10 mg 21/7. My M-spike has gone up a little since the last change in dosing, but again it is stable at its new level. The swelling has resolved and the GI problems haven't gotten any worse.
Bottom line is that you won't know what a change in dosing will do to the control of your mother's myeloma until it is tried. But, I assume that your mother is monitored on a relatively frequent basis. If so, then her oncologist will make further adjustments as needed fairly quickly.
The caveat to all of this is that your mother's oncologist needs to be made aware of any, and all, problems and any, and all, positive changes. The blood tests only tell part of the picture. The rest is up to us to keep our oncologist informed as to how we are doing and how we are feeling.
A long answer, but I hope it helps going forward for your mother.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Reducing doses of Revlimid & dexamethasone
@ JPC: Thanks. Good point. We could try lowering one at a time and seeing how that goes. We have our monthly appointment tomorrow, it is the end of my mom's 5th cycle.
@ Nancy Shamanna : Bonjour! Weird enough Nancy, my mother doesn't mind the dex. She has always been a late night person. It gets her all over excited which oddly enough she seems to not mind. The sleeplessness she manages with some sleeping pills (I am unsure of the name). They seem to solve it 80% of the time.
@ Nancy in Phila: Thanks for the detailed feedback on your experience with Revlimid. I guess you are right. We won't know until we try. I will speak to the doctor about all this.
@ Nancy Shamanna : Bonjour! Weird enough Nancy, my mother doesn't mind the dex. She has always been a late night person. It gets her all over excited which oddly enough she seems to not mind. The sleeplessness she manages with some sleeping pills (I am unsure of the name). They seem to solve it 80% of the time.
@ Nancy in Phila: Thanks for the detailed feedback on your experience with Revlimid. I guess you are right. We won't know until we try. I will speak to the doctor about all this.
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Reducing doses of Revlimid & dexamethasone
Maro,
I am jumping in on this a little later and that is because I have just joined this group and was searching for this topic (Can the dose of Revlimid and dexamethasone be lowered over time and to what end?).
First, let me thank you for getting this discussion (topic) started.
I am coming up on 18 months of Revlimid (25 mg) and dexamethasone (16 mg) and my doctor wants to discuss a possible dosage change in September (18th month).
At relapse my counts were 4000 and have now declined to 33, so almost a full response to the 21 day regimen.
In reading about your mother, I agree that some of the side affects can be nasty, but I am timing the dex so that the "event" (on and off stint on the toilet) is on Sunday each week. I do this by taking the 16 mg of dex early on Thursday mornings. I tell everyone now that I am an "event planner."
Being tired from taking the Revlimid can be off set somewhat by drinking coffee or coke or whatever has caffeine in it. This works for me.
Hopefully my post will rekindle others to jump in and perhaps refresh this topic with new.
So how is your mother doing now if you don't mind me asking?
Regards,
Lon in Woodstock, Ontario. Canada
I am jumping in on this a little later and that is because I have just joined this group and was searching for this topic (Can the dose of Revlimid and dexamethasone be lowered over time and to what end?).
First, let me thank you for getting this discussion (topic) started.
I am coming up on 18 months of Revlimid (25 mg) and dexamethasone (16 mg) and my doctor wants to discuss a possible dosage change in September (18th month).
At relapse my counts were 4000 and have now declined to 33, so almost a full response to the 21 day regimen.
In reading about your mother, I agree that some of the side affects can be nasty, but I am timing the dex so that the "event" (on and off stint on the toilet) is on Sunday each week. I do this by taking the 16 mg of dex early on Thursday mornings. I tell everyone now that I am an "event planner."
Being tired from taking the Revlimid can be off set somewhat by drinking coffee or coke or whatever has caffeine in it. This works for me.
Hopefully my post will rekindle others to jump in and perhaps refresh this topic with new.
So how is your mother doing now if you don't mind me asking?
Regards,
Lon in Woodstock, Ontario. Canada
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Lon - Name: Lon
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2002
- Age at diagnosis: 47
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