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Fatigue increase

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Hi, I was wondering if anyone has had major increases in their fatigue over time? I’ve been on glivec and now the generic for coming up to 12 years now. I had a degree of tiredness right from the start and all the other common side effects we expect but responded well to the treatment and I was in molecular remission within the 1st year. In the last 2 and a half years though I’ve seen a dramatic increase in my exhaustion levels, despite my decision to reduce my dosage from 400 to 200 a day. I now can only manage to work one to two days a week, where previously I worked full time and I wake up as exhausted as if I’ve worked a 12 hour physical day. I usually fall asleep during the day for an hour or so as well as my 8 hours a night and by 5 pm I’m useless, can barely string together a coherent sentence. I haven’t been able to see my consultant for almost a year, they keep cancelling my clinic and just send me my blood results and an occasional phone call from a haematology nurse who can’t answer any of my concerns. I feel really alone and abandoned by my hospital and no one seems able to give me any answers so I’m hoping everyone here on the site can shed a bit of light on whether this is normal, I can’t believe we can all be having to live with this amount of fatigue day in day out. Thank you, anyone who can offer an opinion or their situation xx

I've been dealing with massive fatigue from Gleevec for many years too, despite a dosage reduction. I've gone on three Gleevec breaks over the years, and after about one week of being on a break, I start to feel incredible and energetic and clear-minded, like there's sunshine in my veins. But then I realize that's just what it feels like to have the Gleevec out of my system. However, I'm deeply grateful for the drug because it works to battle the disease. It's a frustrating situation to be in that nobody will understand unless they're experiencing it themselves. In other words, I hear you. 

I have being taking imatinib now for 2 years 5 months 400 mg I have also noticed over the past 6 weeks I have more fatigue my consultant says it's most likely the imatinib causing this as my Hb is 13.3 so not Anaemia although on the lower side for a male I do work still in a very busy job 28 hours a week but with one hours travel each day and I still attend the gym three times a week as I feel its essential to keep fit
I think I have just accepted I have to live like this now but I also asked my GP if I could have my thyroid bloods checked and vit d levels also to check my HbA1c and B12
As if any of these are abnormal they can cause fatigue also
MA

Thanks William,  interesting you took the breaks, was that to for trials or just to see how you coped, I’ve always been hesitant as I know some reports have suggested that achieving remission after breaks can become more difficult. When you say massive fatigue do you mean like I’ve described? I have to psych myself up to even do mundane chores! It’s like the bone weary leaden feel you get with flu, all the time. I’m actually trying to get assessed to see if it’s Chronic Fatigue on top of the CML. I agree thank everything for the drug, that’s 12 years I wouldn’t have had otherwise but the constant exhaustion is becoming truly life altering. Thanks for replying, take care

Thanks for your reply MA. Just had all those things checked and they are all perfect but the fatigue is now completely running my life. I’ve had to ease back on exercise as now my muscles have lost all elasticity and tear so easy, miss tennis and badminton! I have accepted all those compromises we make to keep going but I now think maybe it’s not just the imatinib but CFS too, I’m trying to get my Dr to take this seriously but hitting a brick wall, trouble is I look really well and healthy! I’m going to try and get to actually see one of the ever changing consultants and see if they will refer me for assessment, just want to know what it is! Hope everything goes well for you with your ongoing treatment.

Hi Shayner,

I am going through the same experience as you. I lived perfectly well on Glivec for 5 years (work full time, exercise, travel cook) but since switching to generics and lowering to 200mg I started to suffer. I now have huge peaks and troughs and have to just stay in bed some days as if I had the flu. 

I have now switched to Dasatinib 50mg but still feel as bad, so may try Dasatinib 20mg soon. If not, then I’ll give Nilotinib a shot. I am only 34 so can’t resign to a life of this without a fight. 

Did you feel feel better taking generics or did Glivec also cause you fatigue? I noticed some patients have managed to obtain the original Glivec again due to side effects of the generics. 

Try to consider different strategies. Imatinib is not the only option here. Most people end up moving on to other drugs due to side effects.

Tom 

 

Hi, I put a similar post on the other day, 15 years on glivec and my fatigue is worse than ever, I find it hard to motivate myself , I have flu like symptoms, aches, can’t control my body temperature, don’t feel refreshed at all after sleep , the list goes on but at the same time I’m grateful for such a wonderful drug , i don’t work now and when I do feel ok I overdo it then I’m wiped out for days . 

Oh Tom, that is young to get such a diagnosis, in late 20s. I was 40 and that felt young enough. So sorry. I was certainly less tired on Glivec than generics but that might be a coincidence. I was getting fatigued rather than generally tired and now I feel exhausted all the time and have joint pain. I’ve had to cut work right back although the days of having to stay in bed are thankfully not often. I’m interested that you are trying the various different drugs, I was hesitant as glivec had relatively few side effects for me for so long. After reading the lists of side effects for them all I’ve stayed on imatinib as a lesser evil! Please let me know how you get on with them. I think being determined and fighting is what helps us the most! I will see if I can get back on Glivec even just to compare how I feel. Thanks again and take good care x

Kathy that is all so true. So many things that chip away at the quality of life but thank god we have the pills! Are you on the generics, I seem to get a different one every 3 months! The constant weariness is so hard to manage, and so difficult to explain to the drs and family and friends. And you are so right about overdoing and being wiped out. Maybe it is just length of time on the imatinib then? You haven’t put your age, I’m 52 feeling 80 and I guess you are prob on 400 or 200mgs? 

Hi no I’m still on 600 mg  glivec, I tried the generic but couldn’t tolerate it ,im 42  x

So you were diagnosed in your mid 20s. Can I ask if they’ve tried lowering your dosage? You don’t have to answer if you’d rather not, it just seems there isn’t much consistency with how the condition is treated

Hi yes I was dx at 26 , I was originally on 400 mg but kept coming out of my mmr so they increased it to 600 back in 2008 ish , I’m scared to reduce the dose just incase the same happens . X

Hi Kathy. That is a very high dose. Are you determined to stay on imatinib or would you consider trying others? They get deeper responses quicker and may offer you a chance at trying TFR. Not many people take over 400mg imatinib. 

Shayner, I didn't take breaks for trials. It was just a personal choice. I needed relief from the fatigue and other side effects. My onc always says that a two week break every couple of years shouldn't be a problem. And yes, describing the fatigue as flu-like is accurate. I should mention that when I took those breaks, I was BCR-ABL undetectable and stayed that way long after the breaks (I've recently been getting lower limit positive results, but that seems unrelated). Your point about achieving remission becoming more difficult does relate to a major concern I have whenever my onc proposes the possibility of cessation, with its relapse risk, and then points out that re-achieving response after relapse is common...nobody has convinced me yet that the re-achieved response will be as durable as the original response, so I'm not willing to take the risk yet.

Hi shayner, I've similar effects (I'm on generic Imatinib 400 mg/d and had dx 2yrs 6 mnts ago). I try not to give up in doing some excercise. Also, something that looks to help me is ginger in the morning. I grate it in some yogurt to mitigate its aggressive flavor. For sure I get some benefit.

Anybody else finding benefit from ginger?

regards

ffiorellino

Thanks for coming back to me on that William, think we are all tempted by the thought of coming completely off the medication, but having CML makes us all realise how precious every day we have is and I think reluctant to jeopardise the status quo! - even when we are drop down tired all the time. Loved your sunshine in the veins description, I can so imagine that’s how it would feel, like being weightless! I’m going to try and get back on Glivec and see if that has any reduction in the fatigue. 

Hi ffiorellino, I’m ready to try anything! I’ll give ginger a try, I know it’s great for digestion but if it helps the exhaustion too that would be great. I do exercise but gently! I make sure I walk over 3 miles a day taking in hills and I do a 40 minute workout in the afternoon but can’t imagine doing proper sports anymore ;( thanks for the advice!