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Cancer of blood that killed Collymore difficult to treat

 Prof Othieno Abinya, an oncologist at Nairobi Hospital. [David Njaaa, Standard]

From the outside, Livingstone Simiyu appears perfectly healthy. Unless he opens up, one would never know that the 27-year-old has been living with chronic myeloid leukaemia, a type of blood cancer, since 2013.

“You cannot tell that I am sick. I am normal, the only difference is that I have to take drugs daily,” he says.

The symptoms of the chronic myeloid leukaemia began manifesting in 2011.

“I used to feel sharp pains in my limbs and I couldn’t walk properly because my legs were swollen. I thought it was because I played hockey in high school,” Simiyu reveals.

The first months after Simiyu’s diagnosis were characterised by denial, then, as he narrates, he adopted a reckless lifestyle, convincing himself that he was going to die soon anyway.

Two years later, Simiyu was still alive. Realising that he might actually beat the cancer, he began transforming his life for the better.

According to Professor Othieno Abinya, a consultant and oncologist at the Nairobi Hospital, patients suffering from chronic myeloid leukaemia like Simiyu can manage their leukaemia and live normal lives without the need to undergo other treatment procedures like chemotherapy. This thanks to Imanitib, a breakthrough drug that has greatly transformed the treatment of chronic myeloid leukaemia globally.

Before 1999, there was no cure for chronic myeloid leukaemia, except for patients who underwent bone marrow transplants. Even then, chances of a successful transplant were low in patients above 40.

Since 2005, the drug that costs Sh200,000 a month or Sh400,000 if the patient is on double the dosage has been offered for free to chronic myeloid leukemia patients in Kenya at the Nairobi Hospital, thanks to a programme by the Max Foundation, an organisation that promotes access to cancer treatment.

According to Prof Abinya, patients with chronic myeloid leukaemia have to undergo life-long treatment, which means they have to be on the cancer drug for life. However, new evidence shows that patients who show no traces of cancer after successfully using the drug may be able to stop using it in future.

But while patients with chronic myeloid leukaemia are surviving in larger numbers, the same cannot be said for patients suffering from other blood cancers, in particular, acute myeloid leukaemia, the same cancer that killed Safaricom boss Bob Collymore. For this leukaemia, chances of survival are minimal, particularly for patients aged 60 and older.

Prof Abinya explains that specialists are often reluctant to treat acute myeloid leukaemia in patients above 65 due to the diminished chances of recovery.

For acute myeloid leukaemia, tests are done to determine the risks. If the risk is low, the patient undergoes induction and consolidation, which includes procedures like chemotherapy. If the risk is high, the patient needs to undergo an immediate bone marrow transplant; otherwise he/she will relapse.

The treatment process, as explained by Dr Abinya, takes a heavy toll on the body, making it unendurable for older patients, which is why few make it out alive. He states that the treatment for acute myeloid leukemia can actually kill the patient faster than the cancer itself.

“During treatment you are like a ghost. It’s like it takes you to hell then you come out. The family and staff have to be very strong because if they panic they make the doctor panic and everything is gone,” he says of the rigorous treatment process.

The treatment for acute myeloid leukaemia comes with many precautionary measures, which, if compromised, lead to the patient’s death.

“With poor hygiene the patient is not getting anywhere because the immunity is zero. You will get infections and die,” Prof Abinya explains.

“The blood donor service also has to be responsive. If the hospital cannot prepare platelets to transfuse you so you don’t bleed then again you are not getting effective treatment”.

He also adds: “There has to be an availability of the best antibiotic, antifungal and antiviral drugs. If they are unavailable treatment will not work as the immunity is low. Bacteria and other infections will hit you and you will die”.

“Discipline is also important, by staff and relatives,” he explains of the treatment process, explaining that patients should not be in the room with more than two people at any one time and that they should not spend a lot of time with relatives and other visitors as doing so exposes them to infections yet they are highly vulnerable.

The room should be spotless, containing just the bed, patient and necessary equipment. 

If relatives and friends want the best for the patient, Prof. Abinya notes, then they will show it through gestures such as donating blood, rather than visiting the patient and exposing them to infections.

“During treatment the doctor does not sleep,” the professor admits, terming every call the doctor gets as a scare.

The treatment for acute myeloid leukaemia is also extremely costly. For instance, the first phase of treatment alone, referred to as induction therapy, costs between Sh1.5 million and Sh 2 million.

“It is not the cancer drugs that are expensive, but supporting them is. When you treat the patients you wipe up their bone marrow and immunity. To fill that gap, you need blood products, platelets, antifungals, antibiotics…those are the ones that take all the money. You find that in just a day you have spent Shs 40,000 just on support drugs. Within no time the bill has gone over Sh 1 million, during induction,” Prof.Abinya explains, adding that many patients are often unable to afford the treatment.

The next stage, called consolidation, requires quick treatment at the hospital so that the patient can be discharged before the white cells drop.

“The infections acquired in hospital are very lethal because they have developed drug resistance, unlike infections that may be acquired at home, which are safer,” he explains. Prof. 

“Once you go to ICU you will die, without any doubt. No one with acute myeloid leukaemia goes into ICU and comes out alive,” Prof Abinya states.

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