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Combatting Fatigue

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I will soon be 71 years old and was dx with CML in 2018.  I am very grateful for my medical team and for the response I have gotten from Imatinib. My BCR-ABL1 has been undetectable for almost a year. 

Before being diagnosed I was full of energy and belied my age. I continue to do a number of justice initiatives with non-profit work since retiring from a paying job.  I do some writing and some speaking.  My challenge is my fatigue. It comes and goes. I will have a couple of days with good energy and inspiration followed by several days where I feel like I am in a fog and have to lie down and nap. Motivation comes hard. Sometimes it even feels like clinical depression, but then I will suddenly have energy and inspiraion again. 

I walk 3-4 miles most mornings and eat healthily, but I cannot shake the fatigue. I am aware that COVID-19 and its effects on our lives is an issue, but this is deeper. 

Any suggestions for remedies?

Thank you!

 

 

Have you thought that it could be the imatinib which is the root of your problems?

The day after I moved from imatinib to dasatinib, I became a changed person.

On imatinib I had lost between one quarter and one half of my energy. I had night sweats, cramps, GI problems, musculoskeletal issues, the feeling of coldness and head tingling.

I had learned the mantra that "you cannot blame everything on imatinib". 

Hi, I was exactly the same ,when I changed from Imatinib to Dasatinib I too was a changed person .I felt so much better and looked better I lost the Imatinib puffy eyes ,the rash ,the bone pain and the awful fatigue in days  ,I thought it was my age but it wasn't ,it certainly was the Imatinib no doubt in my mind at all ,Regards ,Denise.

Rick B, after almost one year of undetectable status, you can safely begin to reduce your Imatinib dosage.  Talk to your onc about allowing you to reduce to 300mg and then continue to reduce with each successful quarterly PCR.  Beginning dosage reduction six weeks prior to your next quarterly PCR eliminates the need for any extra testing that most oncs seem to want during dosage reduction.  Less TKI should help with your energy level.

Grateful for the responses! My onc says she might consider TFR for me if I stay undetectable for 2 years. Whatever I do - switching TKI or reducing the dosage - I do not want to jeopardize this possibiity and have to reset the clock.  

Much to thank about!

I would bet money that a switch to dasatinib would not make you lose your undetectable status, so a re-setting of the clock would not be an issue.  I agree with Denise that "everything" got better for me when I switched from imatinib to dasatinib, BUT the fatigue - cyclical as you describe it - remains, albeit at a much more tolerable level.  And yes, it is very hard to differentiate fatigue and loss of motivation from clinical depression.  I applaud you for doing your part:  exercise, staying active, eating right.  For me, a couple of things helped from a mental standpoint:  In the early days, my onc told me "It's the TKI, not the CML doing this, and ALL the TKI's give you fatigue, and EVERYONE complains of it."  That made me feel a little better, but I still wanted to know WHY there was fatigue.  I seem to be a person who needs to know that.  I usually can accept and adapt if I can know the reason something is happening.  I found something the LLS.org (in the US) put out very helpful: Cancer-Related Fatigue Facts (Oct 2016); also an article in Leukemia (2009) 23, 1698-1707; titled, Class effects of tyrosine kinase inhibitors in the treatment of chronic myeloid leukemia. I have a personal theory that the off-target effect of TKI's on the metabolic function of cells (how they use fuel to make energy) - the APT sites, I think - is where the problem lies.  At any rate, there's not a whole lot you can do but use coping strategies until such time as you can try TFR.  By the way, if you do decide to try dasatinib, you should insist on starting no higher than 50 mg, because you are coming from a long, sustained, deep response.  Not the same dose you would use if you were just starting out!  The literature is pretty clear on this with dasatinib.  You will be able to avoid pleural effusions at 50 mg or lower (I'm on 20 mg and staying below MR4).

Rick, I'm also 71, cml now for 4 years.  Was on 600mg Imatinib and was horrible, terrible side affects, much energy loss.  Now 400mg Imatinib and still energy loss, side affects much better.  I literally make myself get up each day and walk 4 miles minimum.  Still the energy isn't there.  Depending on BCR/ABL results next month will determine, drug change.  Last test was .250  Hear many good things about changing drugs, Regards Ray

Thanks for this very helpful reply.

Best,

Ray,

I wish you well. I do get up and, after coffee, take a 3 to 4 mile walk. It does help a lot. 

Again, I wish you well.

Peace.