“Patients need to be involved and feel like they are involved”
Toni Montserrat

Toni Montserra, Spain

Diagnosed with CML in 2015

Toni Montserrat was 49 years old when he experienced an unusual amount of fatigue during a family vacation in 2015. When he returned home, the results of a blood test would begin his CML journey. Now retired at age 57, Montserrat spends a large portion of his time advocating for others and helping them access the information he couldn’t through Pacientes LMC, a patient group he cofounded on Facebook.


When were you diagnosed with CML?

It was around eight years ago. I had a blood test on a Sunday morning and they called me later that day to tell me to go to the hospital. At the hospital, they said they had good and bad news: ‘The bad news is you have leukemia and the good news is that it’s the good leukemia.’ I said, ‘Sorry, leukemia is cancer. Cancer is good?’ They said not to worry because you won’t die and you don’t need a stem cell transplant. They said that I would have to take a pill every day and live life with less stress by being calmer. They told me that while I was working on my laptop on my hospital bed. How can I live without stress? I’ve been trying for years and I haven’t had any success.


Have you been taking medication for CML since then?

Yes. I tried to stop three years ago (there has been some success with patients stopping their medication, it’s a strategy called treatment-free remission). But after three months, I relapsed and had to take the pills again. After trying three different drugs and not reaching a deeper response, I started to look for another doctor. I don’t know how it works in other countries but in Spain’s public health system, you can’t choose your doctor. If you have problems with them, you have to deal with it. A few years later, I was able to find a clinical trial around 300 kilometers from Barcelona. I preferred that because I was in the hands of a wonderful woman. The first day she gave me her mobile phone number and told me I could write her on WhatsApp or call her. When I told my public health doctor that I had an opportunity to be enrolled in a clinical trial, with a new, more advanced drug, he was shocked that I agreed to it without asking him first. This doctor had never been concerned about any of my adverse events. He had never written anything down during my visits when I told him how I was feeling — where I was having pain, how I had no energy, how I was having memory problems and so on. When I told him I could bring him all the information I received as I went through the clinical trial, so he could follow along, he threw me and my wife out of his office and said he didn’t want to see us anymore. It was a horrible experience.


Aside from that, what would you say is your biggest challenge when it comes to CML?

A big challenge for me was feeling unable to work. Everybody is different but when you start to take the pills, the majority of us have a big issue with fatigue. It’s difficult to explain, but I always tell people that I never wake up in the morning and feel well-rested. Not one day. I need a nap every day for a couple of hours. I started to realize that trying to work was not possible. Finally, I had to start to take time for me. The other big challenge was thinking, ‘OK, I’m 48, I’m married and we have a daughter, who was 9 when I was diagnosed. How are we going to eat and pay the bills?’ After 18 months of making the minimum salary while on sick leave, I was fired by my company because I wasn’t able to return to work. We had to fight for three and a half years to get a judge to rule that I could no longer work and should be able to access my pension. Now we can breathe a little bit. The last challenge was to accept that I will never again be the same person I was before. I’m different now. As the doctor here was denying my adverse events — my fatigue, my pain — I started to find groups of people with similar experiences online. I started to learn about things like chemo brain, which was a perfect description of what was happening to me. It can be a little scary when you feel no support from the specialist who is supposed to help you with all that.


Was communication always a problem with your doctor?

Absolutely. In fact, he would never look at me when I would tell him how I was feeling. He would stare at his computer the entire time. When I asked for a copy of my first report, it didn’t include any of the things I told him. He said I never told him anything about my symptoms even though my wife was there the entire time and confirmed to him that I did.


Were you ever asked about your quality of life or any side effects from treatment?

No, never. I was always the person who was trying to explain that to them. We finally created a small patient group in Spain through Facebook. We have around 1,000 patients — or patients plus caregivers — with many of them coming from Latin America. It’s a nice group and its useful for other people because it helps them find the things I couldn’t when I started out. If a doctor says a symptom is not possible or is unrelated, someone in the group will immediately say something different because they have experienced the same problem.


Did you feel like you were involved in the treatment you received?

I only felt like that once — during the clinical trial. That ended when the clinical trial ended around two years ago. But even with that trial, I’m not sure what happened with my results because when they evaluate you on the degree of your symptoms, I was grading them all with the maximum or near maximum. When they published the final clinical trial results, it didn’t show that any patients had reported these levels. I have no idea what happened but I don’t really trust pharma companies.


Would you have liked to have been more involved in your care?

Yes, absolutely. For me it was like, OK, I can’t work, I need to have some new hobbies and one of them is to learn as much about CML as possible. I’m not a doctor, but I want to understand why one drug is better than another or what we can do as patients to participate in these decisions. Part of the problem, at least in Spain, is that doctors don’t really have a lot of time. They have a fixed amount of time to attend to 30 to 60 patients, depending on the day. It’s one thing to not ask about quality of life but it’s another to say something is not related to the disease when it is clearly related to the disease. Unfortunately, this is what is happening in many cases.


Do you think doctors and patients are on the same page?

It’s the 21st century, but we seem to have even less communication with doctors today. You and I are able to talk and watch each other perfectly from Canada and Spain, but the doctors we have here are living in another world. I don’t know if it’s a lack of time or what. If a doctor wants to be a specialist in CML, maybe they need to put all the patients with CML in one or two hospitals instead of 10 of them. Sometimes patients here are afraid to question their doctor because they think they may be put on a drug they don’t need or taken off one that they do. Patients need to be involved and to feel like they’re involved.


How do you think the situation can be improved?

From my perspective, in Spain, it would be helpful if there was a nurse or someone else with knowledge that patients could easily talk to that could help them with their questions. It’s also important to take a more holistic approach to treating patients. If I’m sent to a rheumatologist for pain in my elbow, there’s no direct interaction between this person and my CML doctor. There should be one database that contains all the information of patients that gives a complete picture of their health. Right now, we don’t have that. In Spain, you’re stuck with the doctor they assign to you at the beginning of your CML journey. For the patient, it can be a problem if you don’t feel like they are taking the best possible care of you. You really have to be lucky in the doctor you receive.


How important do you think the CML SUN findings are? They seem to confirm a lot of what you have experienced

They’re really important and they show how urgent it is to get reliable information about CML to patients and doctors. The key is to be able to share this knowledge across social networks and patient groups to open the door to people who may still be in the dark. It should be easier for those in need to find this information and access the help and medication they need.


How do you spend your time these days?

I like to stay active. I get tired after an hour of walking, but with my computer I can do other things and still feel useful. I can help myself and other people through online patient groups. It’s something I like to do and I feel satisfied with myself if I am able to share something that makes life easier on another patient who may just be starting their journey.


Toni Montserrat can be contacted at pacienteslmc@gmail.com