Over 8 years, I've been through the myeloma treatment ringer. After 2 transplants, etc, etc, I am now on Revlimid. I was on maintenance Revlimid for over 2 years. And now I've been on 25 mg Revlimid 3 weeks on, one week off, for 3 years.
I'm doing ok, but over the last 6-8 months, I feel the chemo brain. So I've been looking up articles regarding chemo brain ... and apathy. And came across several references to modafinil (Provigil) (it's one of the "smart drugs")
"Modafinil is a novel wake-promoting agent that is effective and well tolerated in the treatment of excessive sleepiness associated with narcolepsy and in persons with shift-work sleep disorder" (description from the study I reference below)
I'm interested to know if anybody has any insights into how well modafinil might work for me, given the issues I'm having.
Here's one study that I found regarding the use of modafinil in cancer patients:
Abstract:
"Objective - We conducted a randomized clinical trial examining the effects of modafinil in reducing persistent fatigue in patients following treatment for cancer and performed secondary analyses to assess the effect of modafinil on cognitive function.
Methods - Breast cancer patients who reported a score of ≥ 2 on the Brief Fatigue Inventory (BFI) were enrolled in the study. In Phase 1 (P1), patients received 200mg modafinil open-label once daily for 4 weeks. In Phase 2 (P2), patients with a positive response following P1 were randomized either to an additional 4 weeks of modafinil or to placebo. Tests of memory and attention selected from the Cognitive Drug Research (CDR) computerized cognitive assessment were performed at baseline (before modafinil) and after completing Phase 1 and 2. The paired differences for each test score were subjected to a Wilcoxon's signed rank test.
Results - Of the 82 women who were enrolled, 76 completed P1 and 68 completed all assessments in the study. Modafinil had a significant effect on the Speed of Memory (p=0.0073) and Quality of Episodic Memory (p<0.0001) during P1 of the study. After randomization at week 8, those patients who continued modafinil demonstrated significantly greater improvement in Speed of Memory (p=0.029), Quality of Episodic Memory (p=0.0151) and mean Continuity of Attention (p=0.0101) relative to the group switched to placebo.
Conclusion - We found that modafinil improved cognitive performance in breast cancer survivors by enhancing some memory and attention skills. Although confirmation is needed, these findings suggest that modafinil may enhance quality of life in this patient population."
Reference:
Kohli S, et al, "The effect of modafinil on cognitive function in breast cancer survivors," Cancer. 2009 Jun 15;115(12):2605-16 (abstract and link to full text of article)
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Stann - Name: Stann
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 9/11/09
- Age at diagnosis: 46
Re: Modafinil for chemo brain, apathy, and/or fatigue?
Hello Stann,
You have posted an interesting article about 'chemo brain' and cancer patients who suffer from that.
I looked into some articles and I found a mention of breast cancer patients who take aromatase inhibitors trying modafinii and having some success with that (see the reference and abstract below). I am taking an aromatase inhibitor but haven't noticed any chemo brain. However, I really suffered from that after my stem cell transplant.
I found that what helped me was making lists, making sure I talked with others every day, playing scrabble, keeping up with accounting, etc. I couldn't get going in the morning without cups of coffee, and I am still like that! I made more mistakes and luckily was helped out by others. I always have to double check my work, and I still make silly mistakes sometimes! Exercising also helps according to the literature, and I do exercise quite a bit.
I read that modafinii is non-addictive, which is good. It seems also to be used for narcolepsy, i.e. excess sleepiness.
Good luck and if you or any other readers have more information about modafinii and chemo brain, apathy, or fatigue, you could post it here!
Reference:
Davis, J, et al, "Emerging pharmacotherapy for cancer patients with cognitive dysfunction," BMC Neurology, Oct 2013 (full text of article)
Abstract:
"Advances in the diagnosis and multi-modality treatment of cancer have increased survival rates for many cancer types leading to an increasing load of long-term sequelae of therapy, including that of cognitive dysfunction. The cytotoxic nature of chemotherapeutic agents may also reduce neurogenesis, a key component of the physiology of memory and cognition, with ramifications for the patient’s mood and other cognition disorders. Similarly radiotherapy employed as a therapeutic or prophylactic tool in the treatment of primary or metastatic disease may significantly affect cognition. A number of emerging pharmacotherapies are under investigation for the treatment of cognitive dysfunction experienced by cancer patients. Recent data from clinical trials is reviewed involving the stimulants modafinil and methylphenidate, mood stabiliser lithium, anti-Alzheimer’s drugs memantine and donepezil, as well as other agents which are currently being explored within dementia, animal, and cell culture models to evaluate their use in treating cognitive dysfunction."
You have posted an interesting article about 'chemo brain' and cancer patients who suffer from that.
I looked into some articles and I found a mention of breast cancer patients who take aromatase inhibitors trying modafinii and having some success with that (see the reference and abstract below). I am taking an aromatase inhibitor but haven't noticed any chemo brain. However, I really suffered from that after my stem cell transplant.
I found that what helped me was making lists, making sure I talked with others every day, playing scrabble, keeping up with accounting, etc. I couldn't get going in the morning without cups of coffee, and I am still like that! I made more mistakes and luckily was helped out by others. I always have to double check my work, and I still make silly mistakes sometimes! Exercising also helps according to the literature, and I do exercise quite a bit.
I read that modafinii is non-addictive, which is good. It seems also to be used for narcolepsy, i.e. excess sleepiness.
Good luck and if you or any other readers have more information about modafinii and chemo brain, apathy, or fatigue, you could post it here!
Reference:
Davis, J, et al, "Emerging pharmacotherapy for cancer patients with cognitive dysfunction," BMC Neurology, Oct 2013 (full text of article)
Abstract:
"Advances in the diagnosis and multi-modality treatment of cancer have increased survival rates for many cancer types leading to an increasing load of long-term sequelae of therapy, including that of cognitive dysfunction. The cytotoxic nature of chemotherapeutic agents may also reduce neurogenesis, a key component of the physiology of memory and cognition, with ramifications for the patient’s mood and other cognition disorders. Similarly radiotherapy employed as a therapeutic or prophylactic tool in the treatment of primary or metastatic disease may significantly affect cognition. A number of emerging pharmacotherapies are under investigation for the treatment of cognitive dysfunction experienced by cancer patients. Recent data from clinical trials is reviewed involving the stimulants modafinil and methylphenidate, mood stabiliser lithium, anti-Alzheimer’s drugs memantine and donepezil, as well as other agents which are currently being explored within dementia, animal, and cell culture models to evaluate their use in treating cognitive dysfunction."
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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: Modafinil for chemo brain, apathy, and/or fatigue?
Hi Stann,
I have some experience with modafinil to counteract fatigue and also to help with concentration. I found it helpful in both regards. I helped keep me awake and alert when I was tired, and it also helped (some) in keeping me focused on whatever it was that I wanted to do.
I also found, however, that I had to be careful to get the dose right. It was easy to take too much, at which point you could get the jitters and lose, rather than gain, focus.
If you haven't seen it already, there was a discussion a while back in the forum about agents similar to modafinil, Ritalin and Adderall, as potential anti-fatigue aids:
"Ritalin or Adderall for fatigue?" (started July 2, 2014)
There may be some issues raised and discussed in the previous forum thread that could helpful as you figure out what you'd like to do.
Good luck, and let us know how things work out for you.
I have some experience with modafinil to counteract fatigue and also to help with concentration. I found it helpful in both regards. I helped keep me awake and alert when I was tired, and it also helped (some) in keeping me focused on whatever it was that I wanted to do.
I also found, however, that I had to be careful to get the dose right. It was easy to take too much, at which point you could get the jitters and lose, rather than gain, focus.
If you haven't seen it already, there was a discussion a while back in the forum about agents similar to modafinil, Ritalin and Adderall, as potential anti-fatigue aids:
"Ritalin or Adderall for fatigue?" (started July 2, 2014)
There may be some issues raised and discussed in the previous forum thread that could helpful as you figure out what you'd like to do.
Good luck, and let us know how things work out for you.
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JimNY
Re: Modafinil for chemo brain, apathy, and/or fatigue?
Many years ago I was given a prescription for modafinil to promote alertness while driving on long trips.
I recently asked my oncologist to prescribe it due to fatigue from my 10 mg daily Revlimid maintenance program. I found a 100 mg dose effective in promoting alertness. My thought is to have it available and perhaps use it weekly or bi-weekly to ensure I get a productive day in.
I expect it will give me more freedom to schedule a fuller day without fear of cancelling things due to fatigue or brain fog. I will probably try a lower dose. I had some trouble sleeping after dosing that may have been related and I suggest anyone using modafinil monitor its effects .
From Wikipedia: "The Canadian Medical Association Journal also reports that modafinil is used by astronauts on long-term missions aboard the International Space Station. Modafinil is 'available to crew to optimize performance while fatigued' and helps with the disruptions in circadian rhythms and with the reduced quality of sleep astronauts experience."
I recently asked my oncologist to prescribe it due to fatigue from my 10 mg daily Revlimid maintenance program. I found a 100 mg dose effective in promoting alertness. My thought is to have it available and perhaps use it weekly or bi-weekly to ensure I get a productive day in.
I expect it will give me more freedom to schedule a fuller day without fear of cancelling things due to fatigue or brain fog. I will probably try a lower dose. I had some trouble sleeping after dosing that may have been related and I suggest anyone using modafinil monitor its effects .
From Wikipedia: "The Canadian Medical Association Journal also reports that modafinil is used by astronauts on long-term missions aboard the International Space Station. Modafinil is 'available to crew to optimize performance while fatigued' and helps with the disruptions in circadian rhythms and with the reduced quality of sleep astronauts experience."
Re: Modafinil for chemo brain, apathy, and/or fatigue?
I'm also considering modafinil for chronic fatigue and would appreciate any additional feedback people might have.
For the last year or so, I have been having extreme problems with my sleep and fatigue.
I am currently on Kyprolis and 10 mg dex once a week and my count is down to 1 g/l.
My sleep patterns are crazy! i will stay awake sometimes for 36 hours feeling good, and then other days I will go to bed as normal and not wake up for two days (except to go to bathroom).
People don’t believe me when I say went to bed Thursday night and woke up Saturday morning. My husband can try anything and I just can't get up.
We have tried to track the days to see if it’s related to treatment days or after being awake for a long time (not that). There is no pattern to it at all.
My oncologist recommended that I try cortisone (10 mg morning and afternoon) and that helps sometimes, but I will still have my two-day sleeps.
My husband's pain specialist suggested that I talk to my oncologist about modafinil.
I won’t be seeing her for another two weeks and would love to hear any additional feedback people might have about modafinil or similar (e.g.m Adderral). I’m don’t know if you can even use these medications when having treatment for multiple myeloma.
For the last year or so, I have been having extreme problems with my sleep and fatigue.
I am currently on Kyprolis and 10 mg dex once a week and my count is down to 1 g/l.
My sleep patterns are crazy! i will stay awake sometimes for 36 hours feeling good, and then other days I will go to bed as normal and not wake up for two days (except to go to bathroom).
People don’t believe me when I say went to bed Thursday night and woke up Saturday morning. My husband can try anything and I just can't get up.
We have tried to track the days to see if it’s related to treatment days or after being awake for a long time (not that). There is no pattern to it at all.
My oncologist recommended that I try cortisone (10 mg morning and afternoon) and that helps sometimes, but I will still have my two-day sleeps.
My husband's pain specialist suggested that I talk to my oncologist about modafinil.
I won’t be seeing her for another two weeks and would love to hear any additional feedback people might have about modafinil or similar (e.g.m Adderral). I’m don’t know if you can even use these medications when having treatment for multiple myeloma.
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Tori - Name: Victoria
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 56
Re: Modafinil for chemo brain, apathy, and/or fatigue?
I have used modafinil for about 20 years. I have a tendency to be sleepy during the day, especially during boring activities like long meetings or car trips. I think it's amazing. It improves concentration, alertness, and, seemingly, intelligence. I only use it when I think I need it, probably 3 times a month.
I was diagnosed with multiple myeloma a year ago.
I started maintenance Revlimid a week ago. Yesterday I took my normal dose of modafinil at 11 in the morning. Normally the effects last about 12 hours, but last night they seemed to last about 24. I wonder if this will be a pattern.
I was diagnosed with multiple myeloma a year ago.
I started maintenance Revlimid a week ago. Yesterday I took my normal dose of modafinil at 11 in the morning. Normally the effects last about 12 hours, but last night they seemed to last about 24. I wonder if this will be a pattern.
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HewerOfWood - Name: Drew
- Who do you know with myeloma?: me
- When were you/they diagnosed?: November 2017
- Age at diagnosis: 65
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