My life changed on September 2015 when I was diagnosed with a CML (Chronic Myeloid Leukemia) at the age of 48. I started the treatment (daily pill of targeted therapy) and after changing the drug, and still having sub-optimal response, I was accepted on a clinical trial for a third drug. Lucky I'm now on a deep response, but feeling a strong lack of energy (asthenia), bones and joint pain, chemobrain... I'm not able to go on keeping a normal life, not able to work, not able to have a fast brain as I used to have...
From the beginning my main goal was to understand how other patients were dealing with that, as my hematologist denied any possibility it was due to the drug. With the support of a psico-oncologist I finally accepted my "new body and brain speed and power" and also discovered the big gap between what the hematologist tell to the patients and what the patients are really suffering (in an undefined % of cases). Even there is also a big gap between hematologists and drug leaflet or Technical Documents registered on the FDA or EMA.
With a couple of patients create a on-line group of support for patients, in Spain and in Spanish, but having among our members also patients from LATAM. In collaboration with other Spanish patient and Advocate, and with a group of patients from UK we ran a survey about Adverse Events...and as a evidence (even not covering all the requirements to be published as a paper because we didn't have any fund) we can say that 85% of patients who filled in the survey said they are having fatigue in a level of 3.1/5 or having Musculoskeletal Disorders in 82% of cases in a grade of 2.6/5.
As a Patient's Group, we joined the CML Advocates Network and we are involved in spreading the word about the need of the patients to be involved, engaged in our treatment, our rights, our claim for a better Quality of life.
On the other hand, my main issue after 3 years of treatment, is with the Spanish Administration, as they are not recognizing (not only to me...we are a lot of people with different invisible diseases ) my right to access to a Subsidy for disability (even the doctors recognize a 34% of disability in 2016, and of 40% in 2018). https://goo.gl/YuFYV
It is much harder for me to think that my rights are not respected, and that I need to earn an income to be able to live with my wife and daughter of 12 years, than the fact of having changed my life or having a blood cancer. And at the same time this is what encourages me to continue helping other patients, to be updated about our disease and its treatments...
Learn, Share and Grow¡¡¡ (CML Advocates Network motto)
I commit myself to act objectively, listening to all the parties involved, but always defending the interests of the patients, so that they can participate in the whole HTA process.Completed
As a patient and patient advocate, I commit myself to participate with other advocates in the development of networks of interest, in order to efficiently and proactively share knowledge and efforts.Completed
As a patient and patient advocate, member of international patient groups, and with access to congresses and events where we can access information of interest on treatments, studies, diseases, I commit myself to share all useful information with the network of patients with whom I can be related, using plain and clear language, or facilitating direct access to the original papers.Completed