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Managing Fatigue & Chemo Brain: My Modafinil Experience
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Fatigue and chemo brain are a big part of MM maintenance, for example with Revlimid. I do all the helpful stuff from exercise to plant-based diet to meditation to yoga, and each helps some.
I have recently tried Provigil (Modafinil), which has been used by other cancer patients and also in multiple sclerosis. A pharmacist told me it is huge for his wife with MS. Here is one report:
"Conclusions: Modafinil provides significant improvements in attention and speed of memory for breast cancer patients following their treatment of cancer." (link below)
But overall, studies are mixed. There are quite a few results saying it does nothing.
All I can say is, for me it has been very helpful, so far.
Modafinil affects multiple neurotransmitters. It is not well understood. Patients struggle to describe what it is like, and for different people it is a different experience. It is stimulating, sort of, in a way, but it is not a stimulant.
I would say it is "activating" - I get stuff done.
Modafinil usually does not cause sleep, cardiac, and other other problems of stimulants like Ritalin, and also amphetamines. For most people, it keeps them going but then lets them sleep. This is big. It's why the military uses it for pilots, etc. I also tried the amphetamine Adderall and it gave me severe stomach cramps. Ritalin wires me for days.
Armodafinil is a "cleaner" version that can reduce GERD and other side effects that some people experience. It also has a longer, smoother effect.
I have used Apotex Modafinil and Sandoz Armodafinil. The cheaper brands probably have differences with fillers, etc. that can cause more side effects. None of them are cheap.
As a poorly understood psychotropic med, Provigil / Modafinil may have long-term risks to memory and other brain functions. For example, there are concerns about students using Provigil (or fake Provigil) to cram for exams, and ER docs using it to stay awake.
I am proceeding cautiously under the supervision of the prescribing psychiatric nurse. I found him by looking for ADHD clinics. I don't take it all the time, which may reduce tolerance and other long-term problems.
Myeloma patients face lots of risks, including the effects of fatigue and chemo brain. So it might be worth discussing Provigil / Modafinil with your hematologist.
There does not seem to be much awareness in the myeloma community, so do some homework on the research studies. As always, beware of all kinds of misinformation on the web. Start with Google hits on the science journals and then branch out cautiously.
Hope this info helps
https://ascopubs.org/doi/10.1200/jco.2007.25.18_suppl.9004
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