I got so depressed with this fatigue I had to see a psychiatrist, he is very good. And I just emailed him about taking Ritalin.
I will report what he says. I also sent him the link that Kat73 included.
I just emailed a very good psychiatrist about using Ritalin for fatigue. Hope Trey can weight in on this.
Started by
jmoorhou
, Aug 08 2016 05:16 PM
8 replies to this topic
#1
jmoorhou
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Posted 08 August 2016 - 05:16 PM
Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis
#2
Trey
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Posted 08 August 2016 - 05:38 PM
Some here have said Ritalin or Provigil were helpful. I think it is likely an individualized issue. If a person is prone to depression the TKI fatigue appears to be enhanced. Whether this is a molecular/cellular issue I cannot say. It is probably a "try it and see what happens" issue.
Here was a previous discussion about Ritalin:
http://community.lls...nd-chemo-brain/
See also these drugs:
https://www.drugs.co...ndrome-cfs.html
Some docs see fatigue and alertness as the same thing. I do not. I think chronic fatigue is different. So beware of having docs try to "wake you up" and make you more alert. I think we are awake, but some are also chronically tired.
Edited by Trey, 08 August 2016 - 05:43 PM.
#3
jmoorhou
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Posted 08 August 2016 - 06:18 PM
Thanks so much.
Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis
#4
kat73
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Posted 09 August 2016 - 11:21 AM
Yes, thanks from me too, Trey. You are so right about the difference between "alert" and unrelenting tiredness. I have thought and made a decision to give exercise another better trial for a couple of months while continuing to research and ask my docs about the drugs.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#5
Trey
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Posted 09 August 2016 - 03:37 PM
Just so some may be able to see light ahead of them, my experience was a lot of fatigue at first, but after reduced dosage to 200mg Gleevec it has gone away for the most part. Fortunately I have been in excellent shape all my life, so exercise at first was hard but brought good results. Not everyone will have the same experience, but getting to a place of lower dosage can be something to look forward to for the longer term. In the shorter term a person must do what it takes to fight the disease. Try everything that makes sense.
#6
kat73
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Posted 09 August 2016 - 05:25 PM
Thanks. You always make me feel good.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#7
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Posted 09 August 2016 - 07:46 PM
Saw a show on TV the other night that recommends dance classes as the best form of exercise as we get older. Better for the body than gym work.
#8
kat73
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Posted 10 August 2016 - 10:49 AM
I was never in better shape or had a better or more enjoyable experience than in a real ballet class for a year when I was a young adult. Sigh. But I take your point. It doesn't have to be that strenuous - dance, any dance, is just wonderful. I think a good part of it is just the music!
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#9
gerry
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Posted 10 August 2016 - 03:16 PM
I did Latin american for awhile. The exercise has to be something you'd enjoy, dance would be one of those things for me.
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