surviving cml makes you ‘grateful for the little things’
8 minute read
after a cancer diagnosis, "you don’t take things for granted anymore because you know that, in a twinkle of an eye, it can be gone," says eunice orekha.
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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 eunice’s story.
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eunice orekha was in the middle of moving her family to a new city in nigeria when something seemed off. just 30 years old at the time, the government worker attributed the fatigue and weight loss she was experiencing to the unavoidable anxiety of relocating her household while nursing a young son.
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a trip home to see her parents — who were instantly alarmed by her appearance — prompted her to get the tests that would lead to her cml diagnosis. the unsettling discovery would have been much worse if not for the fortuitous fact that her husband was training to be doctor at the very clinic that would be treating her disease. he may not have been familiar with cml at the time but many of his new colleagues certainly were.
now, more than 18 years later, orekha has become an expert at managing her cml (and the doctors who provide her care) while running a support network that helps others learn how to do the same.
when were you diagnosed with cml?
this was way back in 2006. i had just gotten married and had a son. i noticed i was losing weight, but a lot of things were going on at the time. my husband is a doctor and we were relocating to a different city so he could specialize in orthopedics. i attributed the weight loss to the process of moving. then i went home to visit my parents and they said, ‘what’s wrong with you? are you unwell?’ i didn’t think so. i was always tired, but i was nursing baby and all of that. so we had some tests done, just to be sure, because everyone was really worried. and then i was diagnosed. we felt my cml was in the accelerated phase but in western europe and other countries, it would be considered the blast phase. it was really bad but i was very fortunate because with drugs and help, the situation reversed. that was 18 years ago — i’m much, much better now.
what has been your biggest challenge when it comes to living with cml?
the drugs, of course. i started off on gleevec but i wasn’t doing well so i had to change to a different drug. the biggest issue with the medication was that it gave me intense headaches every single day.
do you feel that your doctors communicated well with you throughout the process?
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my case was a bit unique because my husband is a doctor. because of that, he was knowledgeable. not so knowledgeable about the disease itself — because it was different from what he was he was used to — but because i was diagnosed and then treated in the hospital where he was training, he was able to ask his colleagues a lot of questions. that enabled me also to be knowledgeable and know how to ask questions. i knew how to get answers from the doctors. generally, when you are given a cancer diagnosis, it is very frightening for patients. they just grapple with the idea that they have cancer and they’re going to die. doctors here have to go that extra mile to explain to the patient that this is not a death sentence.
cml is a silent disease — it just creeps up on you. it’s not like the flu where it’s obvious that you’re sick. if you listen to patients with cml, you often hear their diagnosis happened by chance. maybe they just went in for a routine checkup and it was caught. or the person was losing weight. or maybe their liver was enlarged. something will usually prompt them to go to the clinic to find out what’s happening. many times patients come to the clinic very ill and almost want to give up hope. the doctors here used to make an extra effort to explain to patients what was happening and encourage them that there is a drug they can take, they just have to take it regularly and be consistent with it. over time, because the number of diagnoses increased and many more patients were coming into the clinic, we found doctors were not making that extra effort anymore. they would just tell you that you have been diagnosed with cml and if you take this medication, you will feel better. and when people would come in with side effects, sometimes the doctors would try to rationalize their concerns by saying, ‘well, it’s still better than not being on the medication.’
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so you would probably recommend marrying a doctor?
(laughs) i was very fortunate. that really helped in my care. i knew the right questions to ask and we were able to do extra research to find out what the issues were. because we were being so careful, as soon as it was observed that i wasn’t doing well with gleevec, we could immediately try to change medications. the fact that i had a doctor for a husband helped a great deal — it helped close the knowledge gap.
do you think it’s important for patients to feel like they have a say in their treatment?
yes, they should because they’re the ones taking the drugs. unfortunately, we have a lot of people here who are not very literate, so sometimes they just do what the doctor tells them to do. over time, what we’ve done is start support groups at the clinic. certain side effects of the medication patients take can be embarrassing. some drugs cause you to have diarrhea and some people are too embarrassed to talk about that. we have a chat group where people can share what they’re experiencing and find others who are going through the same thing. we find strength within these groups. some things that people are unable to tell a doctor, they can share among fellow patients who may be able to offer a solution. we encourage them to talk.
does it ever feel like patients and doctors aren’t quite on the same page?
yes, because if you’re not a patient, you don’t know what the patient is experiencing. you can’t know. in my case, i had to insist that the doctor reduce the strength of my medication because the headaches were so bad. it was debilitating. i told the doctor that we should do a trial for three months. if we reduce my dosage and my counts don’t go up, then i stay like that. but like i said, i was different because i was knowledgeable. i could get that challenge done with my doctor — not everyone can do that.
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how are your headaches now?
i’m still on a very reduced dose so they are much, much better.
do you have any advice for patients on how they can improve communication with their doctor?
what i usually recommend is to ask questions, although, sometimes, patients are afraid to ask.
i think it’s the responsibility of any healthcare provider to be able to provide patients with answers. sometimes, doctors can be intimidating or it seems like they don’t have the time. the ratio of doctors to patients here is not good — you can have one doctor seeing almost 5,000 patients. but you have to ask questions. to help with this, we developed an information booklet for patients that answers some immediate questions and helps allay their fears. that’s what we give to patients when they come to the clinic. that kind of calms them down because many of them come with that fear.
eunice orekha was diagnosed with chronic myeloid leukemia 18 years ago.
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how did you come to be involved with helping other patients at the clinic?
i was very ill and because of the way i responded to treatment and because my husband is a colleague of doctors at the clinic, i’m often asked to come in and help. i’ll meet with distraught patients who have almost given up on life and i’ll encourage them because i don’t look like i’m also a patient. i’ll say, ‘i was like you and i was very ill, but now i’m ok.’ they don’t often believe me, but i tell them not to worry and to take the medication for a month and they will feel better. maybe because i understand where they are coming from, i am able to empathize with them. it helps boost their results and the doctors are happy. that’s how my advocacy started. it has been very rewarding.
how is your life now?
both of my kids are grown now. i had one before i got ill and the other after i was diagnosed. my son just went off to university and my daughter is almost there. for me, just watching them grow is very heartwarming. i can’t believe it because, as i was saying to my husband the other day, i didn’t think i would even be here. it was a very dark time. we travelled to dubai over christmas and i was looking around feeling really happy because we’ve come such a long way. i was given a new lease on life and it makes me so grateful for the little things. you don’t take things for granted anymore because you know that, in a twinkle of an eye, it can be gone.
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eunice orekha is the president of max care foundation nigeria.
to read more patient stories, hear from cml specialists and find out about the cml survey of unmet needs, click here.
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