19 replies to this topic

[kat73]

Thanks, Trey, for the IRIS info at 8 years.  I do hope the data will show someday that patients continue downward on their PCRs as they approach and leave behind the 10-year mark.

 

I have another question today for everybody.  If I'm going to have to sit around for a hundred more years taking the darned TKI, then I've got to do something about this overwhelming fatigue, which is all bound up with depression and anxiety.  I've done my best to battle the depression as if it were a separate item, but in latter years I've come to realize the fatigue is more a factor than ever in "ruining" my life.  I went to Google and found an anecdotal article by a pediatrician who had chemo for a cancer other than CML and who turned to the psychostimulants that he was familiar with in treating his ADHD patients.  He felt that he had been mightily helped.  I wonder if anyone has tried this?  And, is it being studied in CML?  I am super reluctant to go down this road, but I am sort of desperate.  Naturally, every one of the myriad specialists I see for all my broken systems will be consulted first.  Just wondered what y'all know.

 

Like the pediatrician, I have been through the checklist: no hypothryoidism, anemia is so slight as to be a non-factor, Vitamin D is high enough, nutrition is fine, etc.  I've had therapy for depression, but it's true I haven't taken any meds for it, so MAYBE there's a hole.  Exercise, pacing myself, naps, lowered expectations - all have been tried and although useful in themselves, have not laid a glove on the fatigue.  The data on the psychostimulants in cancer-related fatigue are not so hot - it seems not much better than placebo.  Still, I'm wondering.  What do you think and/or know?

[DebDoodah22]

Thank you kat73 for continuing the dialogue on this critically important aspect of this treatment protocol.
Fatigue and particularly fatigue combined with waves of brain fog, significantly impacts quality of life and our ability to contribute 100% in our own self care and income earnings.

Like you said, " Exercise, pacing myself, naps, lowered expectations - all have been tried and although useful in themselves, have not laid a glove on the fatigue.  The data on the psychostimulants in cancer-related fatigue are not so hot - it seems not much better than placebo."
And my thoughts are that, at worse, meds interfere with TKI efficacy.

We are so blessed to be surviving, all be it, at something of a substantial financial burden, but thriving is beyond my grasp. My primary care doc has little or no interest in wrestling with my quality of life issues and if this is to get addressed so that some energy can be resurrected, I believe CMLers are going to need to collaborate to figure it out, much like the trend toward stop studies and dose reduction.

I have come up with no answers on my own, but rest and diet are not working. What works that has not been discussed? What is he mechanism in the TKIs that pushes energy down? How can we get the interest of researchers?

[kat73]

I've got to try and find a paragraph I read lately that actually outlined the REASONS for fatigue in cancer patients.  I believe it was not specific to CML, and that's probably why I didn't save it.  But it was the first time I had come across what the contributing mechanisms might be (besides cytokines and anemia.)  I will try and find it again, if I can cut through the brain fog and memory sieve.  At any rate, I feel strongly that what we are wrestling with is caused by the off-target effects of TKI's.  And I just wonder if the psychostimulants might address the ones that cause fatigue. 

 

Any experiences out there?  Trey - Any molecular basis for my theory?

[jmoorhou]

I too am finding this fatigue really depressing. The reason for it low blood counts the "miracle" drug Gleevec sends a crystal to the bone marrow suppressing bad white blood cells, and every other blood cell count that allow a normal life. With this kind of side effect how it be considered that good a drug, I'm alive, but have no quality of life.

Hemocrit, hemoglobin low counts are I'm assuming what causes the fatigue, I have both, lower than what they used to be. If Ritalin would help I would love to try it. I hope Trey weighs in on this. There is no reason to assume it would interfere with what Gleevec does.

[jmoorhou]

Kat73, do you have a copy or a link to that article, I'd like to show it my GP, that is where I would start since the Onc, doesn't seem the least interested in this problem.

[kat73]

Janis - I am so computer stupid I don't know how to go fetch the link and bring it here, but the article is called Sleeping with the Enemy: Treatment of Fatigue in Individuals with Cancer, by Robert H. Wharton, in The Oncologist April 2002 and I found it by googling cancer-related fatigue.  It's printable. Even if it doesn't convince your GP about Ritalin, it's very, very eloquent about how badly fatigue affects every aspect of trying to live a life with cancer.

[jmoorhou]

Kat, thanks ok, I found it. FYI, you would just highlight the link, select copy and then
paste.

[pammartin]

In 2012 I used Ritalin PRN for fatigue. A friend with MS has been using it for years to battle her pain and chronic fatigue. As long as you have Dr. approval and it will mesh with your system, I recommend it. Since I developed heart trouble I am no longer able to take Ritalin, but if I could, I would.

[beno]

Initially when I started on Sprycel, I had incredible fatigue from any physical activity.  As my anemia improved, that improved quite a bit.  However, now I feel more fatigue from doing mental activities.  Doing things at work that require concentration wear me down faster than walking the dogs.  Does anyone else have that type of issue?

[kat73]

Janis - You are speaking in (computer) Greek to me, unfortunately!  But thank you for trying.

 

Pammartin - Trey put me on to your old discussion of the Ritalin and it was MOST helpful.  Thanks for chiming in here with an update - I hoped you would.  I'm going to keep thinking about it while I try again to stay on an increasing exercise plan and see if that helps.  I'm wary about the drugs only because I sure don't need to add any new side effects into my life, and the studies are so dismal.  But there are plenty of people, like you, who have been noticeably helped that I do think it's worth considering as an option.

 

Beno - Yes, I feel that way.  The physical fatigue is definitely fed by the increasing mental fatigue, also.

[rct]

As the fatigue has been approaching debilitating over the last ten years, some docs have suggested Ritalin or Provigil.  The only oncs that ever even entertained the idea were back in 2006 when she first started, and even they weren't thrilled about it.

 

The fatigue that plagues cancer patients tends to forget that many, many cancer patients are trying to work and live with it, just like they are told they can.  Exercise?  Doesn't help, mostly makes her worse, but she stays with it to maintain some sort of tone, and to be able to say I AM EXERCISING, since that's what most want to say.  Nutrition?  Nothing.  More of this vitamin, more of that one? Nope.  

 

So at Drukers in 2010 we talked about Ritalin or the other.  He felt that since she was in a place in life where she was trying to finish her career and get the retirement she worked her whole life for, those drugs would only sideline her from life for very different reasons, none of them good, all of them needing elimination in the event of future problems.  So it was basically if you think the fatigue is bad, wait til you see what those alleged anti-fatigue drugs do.  If she was more in the normal CML age range, already retired perhaps, he might consider it because of her control over her schedule.  No employer wants people with cancer, they sure don't want people taking drugs that can potentially cause zombie worker, as if CML doesn't already do that.

 

Our current onc is pretty up on stuff, he too would not do that, and her very long time gp has only said she could certainly try it but that he doesn't hold out much hope.  She doesn't suffer from malaise, she isn't depressed and leading to fatigue, she is profoundly fatigued and that leads to depression, which keeps the fatigue cycle going.

 

Mrs does not have low reds at all, they are just above low fine, always have been, she's one of those blessed with no Neutraphils at all.

 

She plods on, trying to make another approximately 25 months to get out of the daily grind and get to a schedule that suits her.  The fatigue is the number one most serious problem, and it doesn't get any better after ten years of this.

 

Good luck Kat73, I hope it can work out for you.

 

rct

[kat73]

Thanks, rct, for the history.  I'm sorry your wife is as miserable with this as I am!  This confirms for me my own little theory that it is the daily, hourly or even minute-by-minute battle of the cells inside us making us physically so tired and mentally so fogged.  The good guys are pounding on the bad guys and, over there, the innocent bystanders are also trying to stand up in the wind and stay open for business despite the shrapnel.  I may end up trying one of the psychostimulants to see if there's any remedy for coping with this at all.  I'm going to continue to ask and read around and ponder for now.  I do believe I'm worse now after 7 years than in the beginning, when even then it was pretty bad.  But back then I thought it was depression - now, as you say, I'm really not sure about which one is in the driver's seat.  Maybe they're both fighting for the steering wheel!

[IGotCML]

Initially when I started on Sprycel, I had incredible fatigue from any physical activity.  As my anemia improved, that improved quite a bit.  However, now I feel more fatigue from doing mental activities.  Doing things at work that require concentration wear me down faster than walking the dogs.  Does anyone else have that type of issue?

 

I have a similar issue with Tasigna.

 

I was symptomatic when I was diagnosed and was anemic which also caused me significant fatigue from physical activity. It took 2 1/2 months for my red cells to get back to normal and when they did the fatigue reduced greatly. 

 

I didn't expect fatigue from intense mental activities when I started my CML treatment and I find that harder to control than fatigue from physical activity. I am a financial professional, so I am using my mind all day and have had to significantly adjust my daily activities via trial and error to keep the mental fatigue from getting out of control.

[beno]

I have a similar issue with Tasigna.

 

I was symptomatic when I was diagnosed and was anemic which also caused me significant fatigue from physical activity. It took 2 1/2 months for my red cells to get back to normal and when they did the fatigue reduced greatly. 

 

I didn't expect fatigue from intense mental activities when I started my CML treatment and I find that harder to control than fatigue from physical activity. I am a financial professional, so I am using my mind all day and have had to significantly adjust my daily activities via trial and error to keep the mental fatigue from getting out of control.

I am a manager of a decent sized division of a business (2 dozen employees and $100 mil in sales) and it truly scares me how diminished I feel mentally.  Memory lapses, difficulty analyzing data, etc.  I'm worried I can't keep doing what I'm doing successfully and then how would I pay my future medical bills.  The stress and worry turn it into a vicious circle where I struggle to work, which makes me insecure, which makes me struggle more.  

[kat73]

This is so real.  I guess all we can do is keep telling the doctors and researchers, over and over again, until somebody truly studies it, understands where it's coming from, and commits to finding REAL ways to treat it or eliminate it.  I agree that the mental part is considerable.  I don't like to cook anymore, not only because I don't want to stand up that long, but also that I constantly lose my place in the recipe, or can't remember a recipe I've made a thousand times, or just generally make mistakes that just end up shaking my self confidence.  I can't imagine trying to do your job.  All you people who go to work every morning, I salute you as heroes.

[Gail's]

I finally bit the bullet and stopped working. Hard on the budget but such a relief. Can't imagine how I worked as long as I did after diagnosis. I had hoped to work another 18 months but literally couldn't face it. Since stopping the stress and cost on my energy greatly reduced. My sense of identity is changing and I'm feeling depressed but my counselor assures me the depression will lift in time. I wish I had a sense from my onc that they understood how hard it is to deal with the fatigue and fuzzy brain. Thankfully, my primary doc got it and has supported my decision.

[kat73]

Gail's - I'm glad you've got a counselor to stand by you as you transition.  I know what you mean about identity changing; it must be even harder when you've had a career.

[IGotCML]

I am a manager of a decent sized division of a business (2 dozen employees and $100 mil in sales) and it truly scares me how diminished I feel mentally.  Memory lapses, difficulty analyzing data, etc.  I'm worried I can't keep doing what I'm doing successfully and then how would I pay my future medical bills.  The stress and worry turn it into a vicious circle where I struggle to work, which makes me insecure, which makes me struggle more.  

 

You have been treated for CML for less than 6 months, so you are still adjusting to the TKI. From my experience, the memory lapses and mental missteps decreased significantly my 2nd year on Tasigna. I think your concerns are legitimate, but don't underestimate your ability to adapt to your new condition going forward.

[hannibellemo]

Here's the link:

 

http://theoncologist...ent/7/2/96.full

[jmoorhou]

I cancelled my appointment with the doc to see about taking Ritalin, from what I found out, it's a drug that affects the heart, so it doesn't seem like a match with TKI's. I got so jazzed about finding a new drug...my adrenalin kicked in tho, and I feel better!