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Hi everyone,

I seem to be battling fatigue, the best way to describe it is like having a flat battery, yes it does make me sleepy, and overall just sluggish, sapped and low on energy and even motivation.

The odd thing is I wake after a good sleep full of energy and then 2-3 hours after taking my morning dose of Nilotinib I feel like a zombie. In the beginning this was more intermittent with no reason or rhyme but I think it’s becoming more constant. I know TKIs can cause fatigue but I wonder if anyone could describe how their fatigue feels as it’s kind of difficult to describe other than the above. And what they do to circumvent it. I know brisk exercise can help and I used to be a big runner but ironically have had problems with my shins and balls of feet since being on TKI which does interfere with that.

At all blood tests the biochemistry has been normal, I am not quite MMR after 2.4 years but very close (not that would have anything to do with fatigue). I test again in October and results in November.

My doc says supplements don’t do anything and told me at diagnosis to stop taking them immediately... why I have no idea other than he said you get everything from food. Maybe I should start thinking about it. And or do some low impact exercise daily... anything to rid this fatigue.

Many thanks

Alex

 

Hi Alex,

Part of getting older is battling fatigue. As we age our ability to absorb nutrients (vitamins) decreases. Supplementation can help restore deficiency - but taking supplements when deficiency is not occurring is probably a waste of money. Adding more vitamins than you actually need is useless and in some cases harmful.

There are many studies which 'seem' to document the harm of supplementation mostly around anti-oxidants:

I am a strong believer in the value of strategic supplementation around deficiency and for point specific application (take some for a short time then stop). I am a strong proponent of vitamin D, K2, Se, C and minerals (Mg). Food alone does not supply enough of these vital nutrients.

When it comes to fatigue, I suffered fatigue as you until I added iron. I found I was deficient in iron. We don't eat much meat, and I suspect not getting enough iron may be the reason for my fatigue. After supplementing with iron (heme variety), my fatigue disappeared. It took a few weeks, but the iron helped a great deal.

If your red blood cell count is on the low side (as mine is), and hemoglobin is low as well, supplementing with iron could help. Eating iron rich foods is a better way to get iron, but only if you are absorbing it well. Also - if you do supplement with  iron, take vitamin C with it to aid absorption. I do not take iron every day. On days when i do enjoy a nice steak, I won't be taking any iron.  Eat lots of spinach!

 

I have never felt that in the morning (other than for getting little sleep the night before) but I sometimes crash after work.  I will be driving home and then find it difficult to stay awake.  It is probably TKI side effect but afternoon coffee helps.  It is not all the time so I have not really been concerned about it.  All in all I have missed 7 days of work since diagnosis (August 2017) so occasionall fatigue is not the worst thing.  Hope you find the right supplement/method to get over your fatigue.  

Hey Scuba

Thank you for this. Yes I am getting older but this fatigue seems to correlate to the TKIs at least I never had these kinds of tiredness before having TKIs. I am fairly young at 40 (I think haha).

I will try improving my diet again and getting more exercise another way and see if it improves. Today has been particularly hard with the fatigue which warranted my post.

Should it continue after more intervention I’ll speak to my consultant and maybe my levels are lower but he considers them normal.

Many thanks as always for your reply.

Alex

Thanks mate. Yeah it’s an odd one for many months I felt “normal” and only the last year I’d say the fatigue is getting progressively worse. Hopefully it’s not the CML but the TKIs.

Many thanks

Alex

Might be the 'Rona. That's how it started for me. Went to a motocross track and experienced heavy fatigue and excessive sweating to the point I had to stop and lay down in my trailer. And it persisted for about 2.5 wks.

What is the Rona? If you mean the Corona nah it won’t be that I’ve been feeling this on and off for over a year.

Hi,I suffered with really bad fatigue when I was on Imatinib I wanted to nap all the time .I decided to take various vitamin supplements the ones Scuba suggested plus a few more to see if they would help .I asked my Doc to check all my levels to see how I was doing everything was fine apart from my B12 which I wasn't taking .She said it was incredibly  low and that I should have injections every other day to quickly bring it up .Didnt fancy that at all so I started taking a supplement and quickly got it up to where she wanted it .Think I was at 12 she wanted it up in the hundreds can't remember the exact number now ,she said that is probably the cause of my fatigue .It certainly helped me .Maybe it could help you too .Good Luck , Denise.

Have you tried breathing exercises(pranayama)?Take a 5 min break during workday and try the simpler ones and be gentle to yourself,My husband who is also around your age has cml,I think that at this age you feel you should be able to do so much more ,it compounds the fatigue.

Thank you. I think I’ll ask for a blood test to see if anything is lacking or needs supplementing. Needless to say feeling this pooped all the time as far from normal.

Many thanks for your reply

Alex

Hiya,

I practice mindfulness and meditation daily and have done for 3 years it works wonders for state of mind/relaxation and the breathing is a big part of that. I am big advocate for meditation as it’s changed my life in many ways but unfortunately the fatigue seems to persist.

Alex

Hi Alex,When you are deficient in B12, your body isn’t able to produce enough red blood cells to effectively transport oxygen throughout your body. This can make you feel tired and weak.This is why maybe deep breathing won't make much difference .

Thank you yes that makes sense I think the plan of action is to ask the doctor for a test to see what if anything is lacking and then supplement or exercise accordingly. It is the one symptom that I appear to be having that has an effect on quality of life so far. I shouldn’t moan but I also shouldn’t have to struggle.

Many thanks

Alex

Oddly, I do not suffer from fatigue (now on dasatinib), however, I have suffered a loss of strength. At age 64, it may be that age has contributed to my loss of strength but I have lost 25% over three years starting at 12 months prior to diagnosis.

Alex - Yes to everything people have suggested, but I think the fatigue "syndrome" (if you will) has something to do with the off-target effects of TKI's on cells' energy-making systems and is probably inescapable.  Like all the other SE's, some of us have fatigue, some don't; some are miserable, some can tolerate it.  MANY people here can relate to just what you describe, and you're right, it sure is hard to get across to "outsiders".  I will miraculously have a great day - and boy, do I make hay while the sun shines - followed by a total crash the next day (or the one after).  Likewise, I can have a great morning and then - boom, out of NOWHERE - the strings on my puppet body are cut.  I think a lot of things help a little - change drugs, change dosages, exercise, supplements, attitude and coping mechanisms - but in the end, I think we just get used to it and learn to live with it.

Thank you so much for your reply. Glad I am not the only one and glad you can relate to what I’ve described which for some reason was tricky to describe the actual feeling just that it is one that’s undesirable and defo not something I had before treatment. The irony is I had wayyyyy more energy and didn’t even know I was seriously ill before my diagnosis, on TKI I feel like an old man at times. I guess I’ll have to learn to deal with it and find ways to manage it. I guess it’s unrealistic to think you can have this illness be on toxic drugs and feel nothing, those that say they don’t must be lying or not very in touch with the feelings lol.

All the best

Alex

Hi there

I totally feel you on this one.  As someone who was rarely fatigued prior to starting Sprycel and has since been immunosuppressed (going on 9 months), I blame it on medication.  I do really feel a difference when I get a lot of regular exercise but the biggest impact is when I do not drink enough water.  When I drink at least 3L of water a day, I feel noticeably better.  I take all the supplements recommended on this forum and they help, but for me, water is key.  

My first hematologist sent me for regular hydration IVs and that was heaven.   

I hope that helps.  
Renee 
 

 

Picking up on something you said, Alex, I do think it is a phenomenon of our treatment that we felt great before the diagnosis - this cancer had not shown its evil side yet - and have never been the same since our first pill.  I think you see this story again and again - the same descriptions:  "I feel old before my time" and "I want my old self back."  We only can get sympathy and understanding from other CMLers on this because the rest of the world - ESPECIALLY oncologists!!!! - just can't see it, feel it, understand it.  They often don't believe it.  I can get bitter when I think that hey, you guys in the lab sure don't mind mucking about with just about every molecular-level system the gods put in our bodies in order to make these magic pills, and then you turn around and deny that the off-target stuff is inconsequential or non-existent?  But then I get ahold of myself and adjust my attitude LOL.  The point is, in the old days we would all be dead and oncologists/researchers are very happy we are not going to be dead anymore and that's the end of the story as they see it.  Meanwhile, we soldier on in different bodies, with different lives, than we had before.  Just know, you and a million others, are not making it up.  We know.

Hey Renee,

You’re right and might be onto something with the water for the 1st year of treatment I consciously made sure I got at least 2 litres a day. The last year I’ve defo been laxed on that and it could fit the timeline of when fatigue got noticeably more.

Ill make a conscious effort again and attempt exercise too once again.

All the best

Alex

Wow yeah thanks for your reply you echo exactly what I’ve been thinking/feeling. I do feel let down by the system to some degree but I guess we have to remember they’re dealing with very sick people and maybe we are a non subject mostly thanks to the fact it keeps us alive. But I do feel there is some overselling of a “normal” life. Their is nothing normal about it. Gosh yeah I know it could be way worse and we are made to feel guilty because our treatment is so good for the most part. If we didn’t take our pills we’d be in the same boat if not worse than some other cancers. It’s not a competition but I feel it’s downplayed because treatment is effective. I should quite moaning we all get our days but when you’re told normal and it’s at times far from that. You want your money back so to speak. But again I constantly feel guilty saying that knowing how terribly harsh normal cancer treatment is. And you’re right you guys are the only ones who know the struggle at times.

Take care

Alex

My own experience was that I was progressively sicker and losing weight prior to diagnosis. Then I had about 6 weeks of extreme fatigue. It has been a little more than a year now and I am mostly back to what I would consider my normal energy levels. I am 70 and find that I am slowing down probably because of age. I ride a stationary bike 3 miles a day, work in the garden, mow the lawn and keep busy with volunteer activities (now modified by the pandemic). I have always taken a multi vitamin, B complex, Vitamin C and 2000 mg fish oil daily. I have been doing this for many years. I added ferrous gluconate about 4 months ago because of low hemoglobin. My levels have only risen slightly but I do feel better. I note that CML causes macrocytic anemia. which is abnormally large red blood cells. The hemoglobin levels are also low. However, this type of anemia responds better to B 12. So I have added that as well. I know our experiences are all different. I try to read the stories of others and glean what works for me. I hope this helps you, too.

How about taking your meds at night? My oncologist said take it daily but time doesn’t matter. Sometimes I don’t even take it after my largest meal but with the foods that are most absorbent and usually a glass of milk.

Good luck-We need all the energy we can get.

Cheryl

Unfortunately I take Nilotinib which requires a morning and evening dose. If I were to switch drugs X1 pill a day I’ll move to take before bed for sure!

Thank you for your suggestion

Alex.

Hi Alex , I’ve suffered with fatigue fir years, it’s awful, my head wants to do things but my body doesn’t, I can go for a walk and then be completely wiped out for days after ! I look like the walking dead half the time 😂

Hi Kathy,

Gosh it is disconcerting. I am starting to wonder if mine is a bout of depression. It pretty much got regular at my last PCR result (which wasn’t bad just not great and I didn’t take a stuck PCR result well)... I’ve started exercising more to see if I notice an improvement I “think” it might be easing it. I’ll do anything to rid it it’s been awful. I couldn’t continue like that for the remainder on my life however long that is.

Thanks for your reply and hope you manage to cope with yours ok.

Alex

It’s awful Alex , I’ve been on glivec for 17 years now and I do have spells of depression Which definitely makes my fatigue worse x

Kathyp - I felt like this (and like Alex) the whole time I was on Gleevec - there were some times that It wasn't exactly suicidal ideation, but it was along the lines of, "I can't live like this anymore; I can't go on."  Is there any chance at all you could switch drugs?  Dasatinib was night and day for me, after imatinib.

Hi kat,I’m scared to change drugs as I’ve had a fantastic response fir 17 years and I don’t wAnt to risk anything x

Understood.  I feel the same way myself, and so do many others.  You could always go back, though, you know that, right?  No harm would happen with a trial switch of a few months.  If you noticed no change in, say 6 or 9 months, or you didn't keep or improve your PCR number, you could go right back to your original.

Hello All, I was diagnosed with CML a year ago and prescribed Imatinib 400mg and suffer fatigue on a regular basis. I came across the following website and wondered if anybody had utilised and benefited from the site; https://untire.me . The research and advise has been developed by University of Groningen in The Netherlands. The only problem is you require an access code from your health provider, the NHS in the UK don't currently offer this. 

Its claim:-

"Untire gives cancer patients and survivors the tools to reduce fatigue. Are you tired of always being tired? Do you miss being able to actively participate in everyday activities? If you suffer from cancer-related fatigue (CRF) you are probably mentally and physically exhausted. Untire gives you the tools to reduce cancer fatigue and get back to living life. 

  • Easy to use app with videos, tutorials, and daily tips.
  • Online support community with other CRF peers.
  • Comprehensive, step-by-step program

All the Best Tel

Im persistently anemic in iron and b12. When my b12 bottoms out i definitely feel fatigue.

Scuba, got any recommendations for what to look out for and what dose to take of b12 ?

I'm kinda hesitant to go on iron as it gives me constipation

At my routine bloodwork my B12 was low so now I’m supplementing with one daily dissolvable tablet of 1000mg as per doctor’s orders.  Try that to start and you can always adjust your iron intake with food, if you do supplement with iron just start low and work up so you don’t get the gastrointestinal side effects.

I still have days where I’m tired from the imatinib but I did notice a bit of a difference after adjusting my B12.  I also take vitamin D regularly, living in Canada it’s especially important during the winter months.  Lately I’ve also been eating 3 brazil nuts a day for selenium and trying to drink more water.  I think a few supplements can be very important as we age.  

I would think about the depression/mental health component to your fatigue.  It can play a huge part and I know on the days when I’m feeling discouraged I definitely feel more tired.  Even some time outside can help.