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MDS patients speak out

Connaitre et combattre les myélosdysplasies (CCM)

When questioned about our disease, we and our doctors speak first of fatigue, but most words that are used — weariness, tiredness, numbness, heavy legs, stiff muscles, short breath — are not strong enough.

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Patrick Festy

11 April 2017

One patient describes it aptly:

It’s more a sensation of exhaustion than tiredness. I asked: Why am I like this? Why can’t I do the things I should be doing? I was told: You are tired, that’s normal, you are over 60, you are a grandparent, you want to continue to be active, but it’s normal. No, I felt, it’s not normal. I am not tired, I am totally exhausted. Something is wrong with me.

The widow of an MDS patient said:

Few of those they share their lives with or who assist them can comprehend the harassing fatigue that MDS patients suffer. My husband used to say: "We wonder if the specialists who are caring for us understand what this fatigue is really like."

But fatigue is not the whole story. For MDS patients it is associated with symptoms that do not necessarily have a clinical link to MDS but are nevertheless an intimate part of patients’ experience and reinforce the repercussions of fatigue on daily living. Efficace (2014) shows notably that loss of appetite, respiratory problems and insomnia accompany severe fatigue among high risk MDS patients.

And for most patients anemia is not the sole aspect of MDS. Neutropenia and thrombopenia, with their risk of infection and hemorrhaging, have a definite impact on patient survival.

Infectious diseases — primarily pneumonia — are the leading cause of death for people with myelodysplasia. But before being life threatening, neutropenia encroaches on everyday life. Immunodeficiency cuts you off from your friends, relatives and society:

I stopped going to the movies because I’m afraid of germs or I try to go on Sunday morning when no one else does. I’m low on white blood cells and since my immune system has weakened, I don’t use public transportation, I walk. I try to avoid going anywhere crowded. I avoid airports but sometimes I have to use them. I can’t travel the way I’d like to, I don’t dare travel with my grandchildren any more because I’m afraid something might happen to me.

Thrombopenia is another major cause of mortality for patients with myelodysplasia. Patients must plan in advance for surgical operations likely to cause bleeding, program them when their platelet count is still sufficiently high, or just after a transfusion. It is a more pernicious enemy than germs. It is an impalpable threat:

Too few platelets, too slow coagulation will lead to internal and external bleeding... This is what I fear the most, terrible bleeding. I am afraid of bleeding... I lived through the Algerian war, World War II, bleeding is horrible. Yes, it’s an ever present, ominous peril.

When we studied the effects of fatigue on quality of life of the members of our patients’ group in 2012-2013 we also discovered the effects of symptoms and problems often associated with MDS: loss of appetite, respiratory problems, susceptibility to infections and bleeding. The impact is as much psychological as physical. MDS patients surveyed were 25% less likely than other members of their age group to be able to do what they were used to doing and thereby experienced greater physical limitations. But they were also 26% more likely to fear that their condition would get worse than others in their age group and thereby experienced greater emotional distress.

Efficace et al. (2014) results confirm:

Patient-reported fatigue severity, rather than the degree of anemia, more accurately revealed the effects of disease burden on the patients’ well-being and daily functioning.

But Efficace (2015) goes one step further:

In patients with newly diagnosed higher-risk myelodysplastic syndromes self-reported fatigue severity provides prognostic information for survival independent from gold-standard risk classifications. 

He concludes that

fatigue assessment should be included in routine diagnostic investigation for these patients and considered as a standard Baseline stratification factor in future randomised controlled trials.

A prominent French MDS specialist says that after EPO came out as a cure for anemia, doctors realized that their patients were in better shape and that previously anemia was well tolerated by medical professionals who did not listen enough when their patients said they were tired.

As an MDS patients’ group we discussed the communication gap between patients and doctors in our Spring 2012 newsletter (See: Mon Médecin m’a dit). That problems identified in 2012 still persist is shown by G. Caocci et a.l (2015):

Our findings show that physicians treating MDS patients often have difficulty in understanding what their patients preferences are and some do not consider the patients’ preferences to be important. The stakes are high: poor communication that does not sufficiently account for patient preferences and HRQoL is likely to lead to poor compliance with prescribed treatment regimens and suboptimal outcomes. In conclusion, improvement in physicians’ perception of their patients’ health status and preferences for involvement in treatment decisions is necessary.

The importance of considering patients' quality of life, along with objective quantitative criteria to measure the success of treatments, has long been recognized and efforts to clarify and rationalize these criteria by the IWG 2006 include a few words on the subject, but implementation remains extremely timid. We advocate that all clinical trials integrate patients’ quality of life as a dimension of the success or failure of a new treatment, considered on an equal basis with the concepts of remission, transfusion independence, progression-free survival, etc. For this to be possible researchers will have to reach a consensus on quality of life indicators to be used in trials.

Members of our patients’ group strongly support clinical trials that extend the range of potential predictors of disease remission or patients’ survival beyond classical drugs to include factors linked to patients’ physical performances, morale, etc. CCM is eagerly following Predictor, a study undertaken by Pr. Odile Beyne-Rauzy of IUCT-Oncopole in Toulouse and involving 28 other French centers and the GFM. Presented in March 2017 at the 37th annual conference of the French Hematological Society (SFH), Predictor will study 420 patients over a 2 year period to identify the most accurate predictive marker of overall survival among elderly patients with high-risk MDS.



Caocci G. et al. (2015), Accuracy of physician assessment of treatment preferences and healthstatus in elderly patients with higher-risk myelodysplastic syndromes, Leukemia research

Efficace F. et al. (2014), Prevalence, severity and correlates of fatigue in newly diagnosed patients with myelodysplastic syndromes, British journal of haematology

Efficace F. et al. (2015), Prognostic value of self-reported fatigue on overall survival in patients with myelodysplastic syndromes: a multicentre, prospective, observational, cohort study, The Lancet

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