Hello Andy,
Personally, I share similar sentiment on meeting you and everyone here on this forum, while wishing that we could've made all our acquaintances under a much more pleasant circumstance. But wishing and wanting aside, since we're all here to share and acquire some peers' information and experiences in our quest to understand, manage (TKI adherence, physical health and dietary management) and live with CML, let's make it an informative and supportive environment for all.
Despite our personal circumstances with CML, it's still good to have met you and everyone here to discuss and exchange information on our disease from a patient's standpoint. I'd like to acknowledge that i'm also still in my early days with CML (7.5months since diagnosis) but because of that i incline to think that i can easily empathize with you on your new diagnosis.
Pleasantries to one side, let's get serious on the subject and i'd like to offer my personal responses to some or all of your posted questions.
1. With CML being a blood malignancy caused by abhorrent chromosomal switches and subsequent genetic anomaly affecting the bone marrow's production of blood cells, there is little can be done outside of medical laboratories and from patients' perspectives apart from maintaining our strict adherence to our chosen TKI regimen. I said 'strict' because CML is only deem manageable if we remember to take our scheduled daily dose of TKI. The latter's aim is to block off the rogue proteins (tyrosine kinases) and signalling pathways critical to leukemia cells' survival and proliferation (divide uncontrollably) in CML. Even though CML has been likened to Type 1 diabetes relating to disease management, it is still different in the way we 'control' our respective condition. For example, in Type 1 diabetes, patients are burdened with strict personal care which include frequent monitoring of their sugar and carbohydrates intake and constant blood checkups (up to 6times daily!) to ensure there is sufficient insulin level to convert the resultant glucose to keep the disease under control but does not mitigate or change the course of the disease's morbidity. This is where the difference lies; in CML apart from taking our daily dose of our TKI (or as directed), we are not burdened with the same intensity of self care as patients with Type 1 diabetes regarding blood test routines and diet. Additionally, our adherence to our daily dose of our TKI (within tolerability limit relating to toxicity and adverse events) is the only way to we can do to 'control' it and hopefully change the course of this disease's morbidity in timely manner when we do see the steady decline of quantitative % reading of the fusion gene expression of BCR-ABL in our peripheral blood tests mandatory at 3month intervals (for the first year) or as directed by our clinician.
2. Personally, i consider myself as one of the few lucky CMLers who have tolerated and responding very well to my TKI (nilotinib) or as my clinician puts it an 'optimal response' to my treatment therapy based upon the measures and guidelines recommended by ELN. To be honest, my life post-CML diagnosis has not changed all that much other than now i have to put alarms on to take the daily dose of nilotinib without failing; meaning back to work and play while implemented a self-imposed lifestyle change to improve physical and dietary health to help my body fight and reduce the known possible toxicities and adverse side effects of nilotinib.
Again, what i put down here is only pertaining to me and my disease because i know everyone's body is made up differently from the next. Hence, my decision to take up on such pragmatic lifestyle change is nothing short of me being proactive in my management of the disease in hope to prime my body and mind to reduce the onset of adverse side effects and the targeted organs' toxicity of nilotinib.
Above said, my word to you (as a fellow newbie in CML) is to do what you can to understand this leukemia and your related TKI (its side effects) because in my experience the more you understand the disease as a whole the more empowered you feel and the less you come to fear it.
3. I'm not sure what you meant by secondary infections, but i can elaborate on the concurred medical findings on TKIs' (especially imatinib) unfavourable off-targeted effects on normal body's cells. Alarmingly, one particular group of cells found to be affected by the mechanisms of action of TKIs are some of our innate immnune system cells. One particular are our T cells whose role include direct and indirect attack on foreign antigens, bacteria, viruses etc.. This problem lies in the fact that some of our normal body's cells, particularly T cells, also use these same signalling pathways and molecular proteins that were targeted and blocked off by TKIs to kill leukemia cells. The resulting effects; rendered our T cells partially impaired and retarded in responses to fight off foreign evasion of known and unknown antigens/ pathogens. Impairement in T cells extended beyond their mobility to directly attack foreign invaders but is known to also interfered with how these innate immune cells interact and use the signalling pathways to send molecule receptors to activate other immune cells and despatch them to where they're needed in the body.
Medical findings to one side, this is not to say outrightly that CML patients are prone to constant infections when compared with the general population. However, it is practical to conclude that our immune system is less than perfect when compare with a perfectly healthy specimen of our kind. And bare this in mind that it is in the best interest of CML patients and their clinician to be mindful of TKIs' application and the possibility of exacerbation of a pre-existing infection as well as the patients' likelihood to acquire new ones whilst on TKI. Of the latter, in Australia, it is recommended that certain anti-viral immunization against certain disease such as the "shingles" disease should be considered to minimize the risk. In summary, to your question, i can infer based on the several merited medical publications (published in Nature) that TKIs, relative to their pharmacokinetics, have been found to have undesirable off-targeted effects that is known to impair our immune cells' functions and therefore may hinder our body's natural ability to fend of foreign invading antigens/ pathogens and tissues that otherwise would not be a problem in a healthy person.
Well, i hope i've put out something that may be of help to you in your beginning with CML.
Best Regards,
Ellie.
Ps. Much apologies for the essay-length response.
