Hi all,Happy New Year!Any Help greatly appreciated as feel so alone with CML in Australia...I know of nobody else with this and it can be extremely isolating but what’s gettjng me down more than anything is the constant and debilitating fatigue?Is it the CML or the Glivec?Its making me depressed and some days I would do AnYTHIng to have some energy!I take Bsupplements,spirulina guarana and ginseng and try eat healthy but feel more and more exhausted and thus,useless!have also been taking copious amounts of panadeine forte which I have needed but am stopping that now...Would do anything for relief.....Can anyone offer me any?Thanks
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Fatigue is ridiculous!
Hi Tanya, I also have bad fatigue. It would be good to talk with your doctor about this. My best solutions are taking naps, drinking a little more coffee, and eating the best diet I possibly can (lots of dark green vegetables, soy products, lean protein). I take a lot of Vitamin D, too - 10,000iu/day. We don't get much sunshine in winter where I live so it is essential and it may help with fatigue. My oncologist said to exercise as much as I can so I try to get at least 10,000 steps/day and go to exercise classes for aerobic activity. We can do all these things, but I have also decided that as benign as CML seems in the TKI era, we have a new normal that we need to accept. Good luck!
Hi, Tanya - All of Justine's comments are quite helpful and valid. However, I never could shake the extreme fatigue on Gleevec. It did not get better until I switched to Sprycel. There was a huge, immediate improvement - BUT, it was still there. It didn't truly leave me until this past year, when I stopped taking sotalol. This had been prescribed for me for paroxysmal atrial fibrillation (that just means periodic bouts, not all the time) for 13 years. I had four bouts of AF between 2003 and 2006, probably due to scarring from radiation for breast cancer (left side). I never had an episode of PAF again on sotalol, and had never noticed any side effects, including fatigue, despite part of sotalol being a beta blocker. My cardiologist said that the only thing (besides the TKI) that I was taking that could possibly cause fatigue was the sotalol and suggested I do a trial off of it and see if it made any difference. Well, it sure did. (I also, knock wood, have not had any episodes of PAF without it.) The way I interpret this is that the two TOGETHER somehow enhanced fatigue. Again, the fatigue was so much better on Sprycel that I had learned to live with it; when I was on Gleevec, I couldn't live with it. I was severely depressed on Gleevec. Again, fatigue and depression TOGETHER - not a good picture. Sprycel helped immensely with both. Is it possible that something ELSE you are taking could be contributing to the fatigue? And/or have you ever considered changing from Gleevec to a different TKI?
Don't beat yourself up about trying to feel gratitude. You will feel grateful later, someday, but right now you feel awful. That isn't right or fair and it doesn't have to be that way. You deserve to feel much, much better than you describe; it makes it much easier for you to fight CML your hardest when you feel better. You also will be able to accept your new normal then. Nobody can accept a new normal that is as miserable as the one you describe! I know that at my very lowest point, I reached out to a psychotherapist. That was the beginning of an upward trajectory (not that all was daisies and birdsong from then on!) for me. I changed oncologists, I changed TKI's, I got emotionally back on track. Getting the energy back was the icing on the cake and came only in this, my 9th year of CML. I also think a therapist, especially one with expertise with cancer patients, can help fill the gap of not knowing anyone with CML. I still have never met anyone in the flesh with CML, myself. That's why the two forums help so much. So keep posting here to your friends and tell us how you're faring.
Thanks for all of that,Kat,it’s wonderful to know others who understand and care!Yes depression and fatigue from Glivec are getting me right down and my normal daily life is very challenging too,moving in to help look after very depressed mother and moving this week to do so,God Help!See my doc in couple weeks,think will switch to Sprycel as you have done,it’s great to hear you are feeling so much better,there’s always hope...
Thanks again,Kat
Hi Kat, I was wondering if I could communicate Private message due to the fact we both had Breast Cancer prior to CML. My email is dawn0331@att.net. Thanks if possible, just had a few questions Dawn
Hi Tanya, I too experience severe fatigue but it is more prevalent when my hemoglobin and Red blood cells are low. I also fight depression. Depression can have many causes, some chemical but other are situational. Ok we are all lucky to be alive, and it sounds stupid not to be grateful.However we live with a lot, let’s be real. Some are lucky and have no side effects but some of us do and I believe that adds to our low mood. The same old remedies apply. Exercise, meditation, reading positive books. I recommend a book called Swerve and the consolidation of philosophy. Great books for depression. Medicine is also a thought. Many people see this as a weakness, but it is not.You have to be the judge of that. Know you have support here. Women sometimes suffer more with depression and our hormones I believe also play a part. Reach out anytime. Hugs Dawn
Hi Tanya, I took Lexapro after the breast cancer diagnoses. I was anxious and depressed. It worked really well. There are so many new ones out now, all having different ways of action, but they all have their side effects too. I really can’t recommend one over the other though. speak to your Doctor and see what he or she thinks. Reach out anytime. Hugs ...you are not alone.