I recently started treatment using Cytoxan and Velcade.
I just completed a 25-day cycle 1. After the treatment infusion, I am so tired for days that I simply can't move. Just lay and sleep all day. Anyone have any advice? Is this degree of fatigue normal? Does it get worse with more treatments?
I'm having trouble handling this massive fatigue that prevents me from doing anything but lie down and rest. Symptoms were even worse, but doc reduced the dosage on last infusion, but still out flat on back.
Looking for advice. Thx.
Forums
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Re: Fatigue from Velcade and Cytoxan
Hi Lor:
Try and hang in there until you get some numbers back after one or two rounds. If you are "responding" fast, then the side effects will be worth it. If you have a bad day or two after each induction treatment (you did not mention dex, which is usually one of the prime suspects), that is typical of many patients. Doses can be adjusted. The issue is to see what you need to do to get a response.
Good luck,
JPC
Try and hang in there until you get some numbers back after one or two rounds. If you are "responding" fast, then the side effects will be worth it. If you have a bad day or two after each induction treatment (you did not mention dex, which is usually one of the prime suspects), that is typical of many patients. Doses can be adjusted. The issue is to see what you need to do to get a response.
Good luck,
JPC
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JPC - Name: JPC
Re: Fatigue from Velcade and Cytoxan
Welcome to the forum, Lormama.
Sorry to hear about the fatigue you've been experiencing. JPC raised a good point by noting that, often, the fatigue can be due to the up-and-down rollercoaster created by taking dex, which you're probably taking with the Velcade and Cytoxan. Has the dex been causing you to lose sleep on some nights, and then "crash" on other days? Unfortunately, that's a common pattern.
If it helps, you should know that fatigue is a common complaint about treatments for multiple myeloma. You may be able to find some tips that will help you in this list of (mostly) fatigue-related discussions here in the forum.
That link, by the way, is from a very useful posting you should know about here in the forum. It's this one, "Useful links to existing forum discussions," which has links to postings on all sorts of treatment- and side effect-related discussion here in the forum.
You'll see in the posting, for example, a link that will take you to all discussions about dex. There are also a couple of links that will take you to postings about transplants, include entire discussions that consist of people who posted updates during their own transplants (or the transplant of a family member).
I hope the fatigue starts to lessen soon, but, in the meantime, listen to your body. If it says that it's tired, rest. Not only will you feel better after the rest, but it probably will help your immune system, and it also will probably put you in a better mood.
Good luck!
Sorry to hear about the fatigue you've been experiencing. JPC raised a good point by noting that, often, the fatigue can be due to the up-and-down rollercoaster created by taking dex, which you're probably taking with the Velcade and Cytoxan. Has the dex been causing you to lose sleep on some nights, and then "crash" on other days? Unfortunately, that's a common pattern.
If it helps, you should know that fatigue is a common complaint about treatments for multiple myeloma. You may be able to find some tips that will help you in this list of (mostly) fatigue-related discussions here in the forum.
That link, by the way, is from a very useful posting you should know about here in the forum. It's this one, "Useful links to existing forum discussions," which has links to postings on all sorts of treatment- and side effect-related discussion here in the forum.
You'll see in the posting, for example, a link that will take you to all discussions about dex. There are also a couple of links that will take you to postings about transplants, include entire discussions that consist of people who posted updates during their own transplants (or the transplant of a family member).
I hope the fatigue starts to lessen soon, but, in the meantime, listen to your body. If it says that it's tired, rest. Not only will you feel better after the rest, but it probably will help your immune system, and it also will probably put you in a better mood.
Good luck!
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JimNY
Re: Fatigue from Velcade and Cytoxan
Hello, Lormama.
Welcome to the Myeloma Beacon.
I may be in the minority in thinking that you ought to get great results with minimal side effects; which ought to be possible with all the research into these novel agents such as the Cytoxan, Revlimid and Velcade, at least in most cases.
However, as you have not elaborated on the severity or any details of your diagnosis nor are there are no details about the dosage of the medications you took during the 25-day cycle, it is hard for me to make any suggestions. Your fatigue level may be so severe that writing a longer post could be tiring for you.
I have the standard risk IgG kappa myeloma. I just completed 8 x 28-day cycles of Revlimid, Velcade, and dexamethasone (RVD - 15 mg Revlimid 21 days on 7 days off, Velcade every week, and 20 mg dex on the morning of Velcade). I think my oncologist prescribed only 20 mg dex (the chemo pharmacy had written 40 mg), possibly based on my then 125 lb (57 kg) weight.
I experienced tolerable side effects during the first 3 cycles. I had a nasty flu and a setback during the 4th cycle and my fatigue level more than doubled for the next 5 cycles. It could have been the cumulative effect. The flu also seemed to have set me back by 2 or 3 cycles in my rapid response to the induction therapy. The 2-day high caused by dex followed by a 1- or 2-day crash (be drowsy or sleep half of the third day) was far worse for me after the flu. And JimNY has cited great reference material for you.
I am detailing the above because I had almost a 90% improvement in my main marker, the kappa free light chain (FLC) level, in the first cycle, and continued to respond well for the next two cycles, bringing the kappa down from around 1,170 to 24 (till the flu seemed to have set me back to 48 and then took 3 more cycles to bring it down to "normal" levels).
Therefore, I feel that the extreme fatigue you are experiencing may be avoidable with a more custom-tailored dosage of your chemo without losing the optimum benefits. I have read a few posts when the dex was prescribed at 40 mg and eventually dropped to 20 or 25 mg. Similarly some patients could not tolerate the larger dose of Revlimid and that, too, was lowered for some patients.
I am sure you have consulted your oncologist about your fatigue level, and I hope he or she can help you get a good response to the chemo without such nasty side effects.
And yes, at least in my case, the fatigue level got worse after 4 or 5 cycles.
K_Shash
Welcome to the Myeloma Beacon.
I may be in the minority in thinking that you ought to get great results with minimal side effects; which ought to be possible with all the research into these novel agents such as the Cytoxan, Revlimid and Velcade, at least in most cases.
However, as you have not elaborated on the severity or any details of your diagnosis nor are there are no details about the dosage of the medications you took during the 25-day cycle, it is hard for me to make any suggestions. Your fatigue level may be so severe that writing a longer post could be tiring for you.
I have the standard risk IgG kappa myeloma. I just completed 8 x 28-day cycles of Revlimid, Velcade, and dexamethasone (RVD - 15 mg Revlimid 21 days on 7 days off, Velcade every week, and 20 mg dex on the morning of Velcade). I think my oncologist prescribed only 20 mg dex (the chemo pharmacy had written 40 mg), possibly based on my then 125 lb (57 kg) weight.
I experienced tolerable side effects during the first 3 cycles. I had a nasty flu and a setback during the 4th cycle and my fatigue level more than doubled for the next 5 cycles. It could have been the cumulative effect. The flu also seemed to have set me back by 2 or 3 cycles in my rapid response to the induction therapy. The 2-day high caused by dex followed by a 1- or 2-day crash (be drowsy or sleep half of the third day) was far worse for me after the flu. And JimNY has cited great reference material for you.
I am detailing the above because I had almost a 90% improvement in my main marker, the kappa free light chain (FLC) level, in the first cycle, and continued to respond well for the next two cycles, bringing the kappa down from around 1,170 to 24 (till the flu seemed to have set me back to 48 and then took 3 more cycles to bring it down to "normal" levels).
Therefore, I feel that the extreme fatigue you are experiencing may be avoidable with a more custom-tailored dosage of your chemo without losing the optimum benefits. I have read a few posts when the dex was prescribed at 40 mg and eventually dropped to 20 or 25 mg. Similarly some patients could not tolerate the larger dose of Revlimid and that, too, was lowered for some patients.
I am sure you have consulted your oncologist about your fatigue level, and I hope he or she can help you get a good response to the chemo without such nasty side effects.
And yes, at least in my case, the fatigue level got worse after 4 or 5 cycles.
K_Shash
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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: Fatigue from Velcade and Cytoxan
I am on Cytoxan, Velcade, and dex. I am IgG myeloma with amyloid in my lungs.
I am exhausted ... partially from the chemo, and partially from lack of oxygen when I exert myself (even walking). After 2 months, my lambda light chains went from 297 to 99.2. I am off for only 1 week and back on for 4 cycles. I get very sick and take anti-nausea medications, and also my abdomen swells so badly!
But I think it is what I have to do and will keep on. Was diagnosed in 2008, have been on and off, no transplant due to O2 issues! It's a hard journey BUT so worth it when I watch my husband, children, grandchildren, and friends smile and laugh. And then I remind myself to watch and enjoy and still be me.
Thank you for sharing. It helps to hear of other's experiences with this!
I am exhausted ... partially from the chemo, and partially from lack of oxygen when I exert myself (even walking). After 2 months, my lambda light chains went from 297 to 99.2. I am off for only 1 week and back on for 4 cycles. I get very sick and take anti-nausea medications, and also my abdomen swells so badly!
But I think it is what I have to do and will keep on. Was diagnosed in 2008, have been on and off, no transplant due to O2 issues! It's a hard journey BUT so worth it when I watch my husband, children, grandchildren, and friends smile and laugh. And then I remind myself to watch and enjoy and still be me.
Thank you for sharing. It helps to hear of other's experiences with this!
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Judy Gray
Re: Fatigue from Velcade and Cytoxan
Judy:
Perhaps some routine labs will share necessary info ?
Hemocrit ? Hemoglobin? Iron ? ( Anemia)
O2 sats? PCO2 levels? = ( Low O2 perfusion)
I don't think it is "all in your head"--I think it is in your blood chemistries. Usually, a fixable situation.
Perhaps discuss with your MD, on the next visit.
Good luck.
Perhaps some routine labs will share necessary info ?
Hemocrit ? Hemoglobin? Iron ? ( Anemia)
O2 sats? PCO2 levels? = ( Low O2 perfusion)
I don't think it is "all in your head"--I think it is in your blood chemistries. Usually, a fixable situation.
Perhaps discuss with your MD, on the next visit.
Good luck.
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Rneb
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