You are here

New to this FORUM

Categories:

Good Morning /Afternoon/Evening ,  

I wish no one has to be a member of this site , however this forum is very helpful for people like me as i have been diagnoised with CML recently (with biopsy + quantattive test) . It took me few weeks to acknowledge the change in my life and my body . I was prescribed with Imatinib 400 mg (with multiple side effets (headache , fatigue , cramps)  and within a month my WBC had reduced from 21K to 2.8 K and i had to stop the medicine  . Now my WBC count has increased to 3.8K  and waiting to increased to normal so that i can start the med again .

Can anyone comment -

1. Any suggestion to have more control on my current situation (any more test etc )

2. How normal life can be for a person with CML 

3. How to avoid / minimise risk of any secondary infection 

Regards 

Hi Andy,

At my diagnosis in April this year, my WBC was 280K. I too am on 400 Gleevec and as of a couple of weeks ago, my WBC was down to 2.6. It is interesting to me that your doctor suggested stopping it because mine never has suggested that. He thinks the WBC will go back up again. I have had minimal side effects other than fatigue, puffy eyes and an eye bleed last week that looked alarming but is not dangerous, according to the doctor. Oh, and I have had cramps too, mostly in my lower legs, and for a while I had bad pain in my joints. Ibuprofen and calcium supplements helped with those.

The best suggestion I can make for you since I am also newly diagnosed, is to keep looking through this site and post questions. I am not an expert but there are some very smart people who post here often who have had CML for a long time. Also ask your doctor questions. Sometimes they are in a hurry but you have the right to information. Living a normal life can be a challenge even though we are very lucky to have imatinib. Having a chronic illness diagnosis is life changing, for sure. I try to rest when I'm tired, eat well, exercise every day (doesn't always happen!), and try to understand that the future is probably good. Finally, I don't know anything about secondary infections. I have not had a cold or fever or anything since my diagnosis.

Best of luck to you.

Justine

 

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 adherece 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 fighting and reducing 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 all TKIs, relative to their pharmacokinetics, have been found to have undesirable off-targeted effects that is known to impaire our immune T cells' functions and therefore 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.

I really think that stopping the TKI was a weird course of action. If the doctor advised you to do so, I would demand to understand why. If you decided this yourself please GO BACK ON THE MEDS. Going on and off meds have severely damage your long term remission. 

Most of us get fatigue, and you say you are newly diagnosed - how new?  You cannot expect normal energy for at least 3-6 months post Dx. 

For headaches, are you drinking at least 3l of water per day? If not see if that helps.

For cramps, I found weight lifting got rid of those mostly entirely. It doesnt have to be heavy weights but it does have to be regular.

You have the choice of 5 different TKIs to try to minimise side effects but it might be very early for you to switch. Also, fatigue/headaches/cramps doesnt really seem like major enough side effects to stop treatment to me. Stopping treatment is the number one implicative factor in TKI resistance...then what will you try?

for your other questions: Life can be pretty normal, however each patient response to treatment and the disease very differently. I'm certainly not living life wrapped up in cotton wool, and yes I have more fatigue than I used to but I live with it and hike slower :D

Secondary infection: I have no idea what you mean. Can you explain what you mean? Generally the docs can check your immune system response via a blood test, I was checked at 6 months post Dx when I told the docs I was going to Sri Lanka for holidays.