cml: 'this thing is not going to be the end of my life'
6 minute read
"we only get to see our doctors once in a while, so it’s important to use that time wisely and to speak with confidence," is onward mudindo's advice for having good relationship with your doctor.
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one of the most critical components of successful and effective health care is the relationship between a patient and their healthcare provider. this includes the ability to communicate openly and honestly when it comes to treatment goals, and for the patient, having a role in decision-making.
in 2022, pharmaceutical company novartis surveyed people living with chronic myeloid leukemia (cml) — a rare blood cancer — as well as the doctors who treat cml. the survey, known as cml sun (cml survey of unmet needs), gathered insights from 361 patients and 198 physicians (hematologists and/or oncologists) in 11 countries (australia, brazil, canada, france, germany, italy, japan, south korea, spain, the uk, and the u.s.) from november 2022 to march 2023. the findings revealed that there needs to be more communication and shared decision-making between patients and treatment providers; patients need therapy options that are both effective and tolerable; and that discussions between doctors and patients should balance quality of life, effectiveness and tolerability of treatment.
healthing’s advocacy & better health content development team went to the cml community to find out what patients, caregivers and healthcare providers thought about the survey findings, how they envisioned the results improving care for people living with cml and other health conditions, and why patients need to be equal partners in decisions made about their care.
this is onward’s story.
onward mudindo was just 34 years old when he was diagnosed with cml. over the next five years, the disease — and the side effects from the drugs used to treat it — forced him to face an increasingly uncertain future. he lost his job with the zimbabwe national army and struggled with the stress of feeling unable to support his growing family.
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now 43, mudindo is in a much better place. he found a new job in online marketing and new purpose in the support group he created to help others in need. he may not be able to cycle quite as far these days — one of his favourite activities — but the family he once worried so much about has provided him with all the love and support he needs to face whatever comes next.
how were you diagnosed with cml?
the situation i was dealing with became too much. i would wake up in a pool of sweat pretty much every day. i knew there was something wrong. i went to the clinic for a general checkup but there was nothing there that they could see. they tested me for malaria and hiv and a few other things, but found nothing. i just kept trying to get other tests done. then i began to experience splenomegaly — an enlargement of the spleen. i went for several more tests, including one that checked my bone marrow. this led to my diagnosis in 2014.
what has been the biggest challenge for you when it comes to living with cml?
i feel that, as a man, i should be able to provide for my family. when you lose your job, you become hopeless. i’ve missed out on many opportunities because of my condition. my country is very poor, so people my age usually cross the border in search of greener pastures. i can’t do that because, when you’re a patient, you need to go for checkups get more medication every three months. that’s a big barrier for me. i’m doing better now, but i’m still trying to live my life without any problems.
when you when you first received your diagnosis, did you feel that your doctors communicated well with you?
i would say yes. the doctors have been nice to me. they told me very early on that this thing is not going to be the end of my life and that i’m still going to be able to do whatever i want to do. unfortunately, at the time i was diagnosed, i think it was rare for them to see a cml patient. now that there are larger numbers of us, i think they are doing a good job of communicating with patients.
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did they ask you about any side effects that you might be experiencing from your medication?
they did. usually when you first start taking the medication, that’s when you have the most issues. in the early days, they monitored my condition and any side effects i was experiencing. later on, it became a matter of looking at my progress and making sure i had the prescription i needed. side effects were no longer as big of a concern for me.
do you feel that they were concerned about your quality of life?
not really. but i feel like if i told them about the challenges i was facing, especially at this stage in my life, they would listen to what i had to say.
do you feel you had a say in your treatment?
yes, i do. in my early days, there was a time when i was on 400 milligrams of imatinib (glivec) but i wasn’t doing well — it was too strong. i decided to ask my doctor to adjust the dosage. i told him that you are the doctor and i am the cml patient and we need to agree on this. we agreed to reduce my dosage and it worked
is there any advice you would give to other cml patients in terms of how to deal with their doctors?
they should be friendly to their doctors, but they should not be shy. they should be ready to express how they’re feeling and make sure their doctor takes the time to discuss these things. we only get to see our doctors once in a while, so it’s important to use that time wisely and to speak with confidence. sometimes, a doctor may have only just learned about cml, but you are the one who has the disease. talk to them about what you are feeling.
tell me about your support group.
we launched a whatsapp group when we formed the cml zimbabwe trust in 2016. when we visit our doctors, they often give us the names of other patients who are interested in joining the group. we have around 100 members now and we talk every day. once a year, we have a gathering where we meet other patients and try to educate each other. if we see new patients there, we treat them with care and try to encourage them just like others have done for us. sometimes, we will accompany new patients to their doctor’s appointments because when you are first diagnosed, it is very easy to panic. whatsapp has been a great way to connect cml patients. if we lose someone, we announce it quickly and try to deal with it as a group.
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how are you doing now?
i would say, so far, so good. the medication has helped me a lot. i feel just like any normal person. i have to deal with some side effects, but i know that this is the medication — it’s not me. there are unfortunate issues, like losing my job or not really being able to travel outside the country, but my life is pretty normal otherwise.
how has your family been throughout your cml journey?
i have four children now. when i was diagnosed, my oldest was 8, the second was 6, the third was 2 and the fourth was not existing yet. we had him when i was on medication. when i was diagnosed, it was at a time when my children needed me the most. it was really hard for me because i was looking at the cost of primary education and things like that at the same time i found out about my cml. but we managed to raise them well and now my family does a great job of supporting me. my children always ask about my progress after i see my doctor and they always remind me to take my medication after we have supper. i love that they have been so supportive.
when you’re not working or advocating for cml patients, how do you spend your time?
i like to go cycling. i’m a little slower now because of age and fatigue from the medication, but i love it and i think it’s helping me. i also really enjoy gardening and farming. the experts encourage cml patients to keep busy and fit, so i’ve tried my best to do that.
onward mudindo is one of the founders of cml zimbabwe trust. for more cml patient stories, click here.
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