Patient story
Nick.
First treatment did not work. Now in a clinical trial.
Nick is 62 years old and he received a Chronic Lymphocytic Leukemia (CLL) diagnosis at the age of 57. After the diagnosis, and before starting treatment, his hematologist asked him to undertake prognostic tests. Their results helped his doctor to identify the most suitable treatment. Nick and his hematologist chose one of the recommended treatments, but after some months the healthcare team realized that this treatment was ineffective in his case. His physician suggested that Nick takes part in a Clinical Trial. Clinical trials usually evaluate new drugs, different combinations of existing ones, or new ways of administering standard treatments. Nick has dealt with intense anxiety lately, so he asked for psychological support from experts. Now, he feels better and he is optimistic about the course of CLL.
Nick’s path so far
4 stagesStage · Diagnosis
Diagnosis
You may have received a CLL diagnosis quite unexpectedly, following a regular check-up or upon medical examinations for certain symptoms. The diagnosis may have come as a total surprise to you as you may have never felt ill before and had no reason to suspect the disease. Every person has their own story.
In any case, the diagnosis might seem upsetting and scary at first. Take your own time to process the new information and what it means for you. Every reaction is different and that’s totally okay.
- What does “Chronic Lymphocytic Leukemia” mean as a term?
- What is one experiencing when they are diagnosed with it?
- What should you expect in the future?
- How can you deal with the psychological effects of your diagnosis?
Personal stories
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“At first, when they told me I have leukemia I wasn't very well...It was out of the blue (…) the first thing I remember asking the doctor is whether it is contagious because I have children, and grandchildren (…) I was a mess, I was in my room, I wouldn’t get out, the whole family was by my side. Yet I slowly got over it and I started living life as I normal would”. (Maria)
Podcasts
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Diagnosis Podcast in English
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Diagnosis Podcast in Greek
Stage · Prognosis
Prognosis
Typically, cancer prognosis is about overall survival. However, CLL is an indolent type of cancer, which slowly grows over the years. Despite being chronic, the course of the disease can be unpredictable. This can cause uncertainty and worries regarding the future.
Thanks to the development of new diagnostic techniques and the introduction of novel targeted therapies, the era of personalized medicine is here. Nowadays, there are prognostic tests which can assess which treatment is more effective for each individual. Before starting your treatment, you may be asked to undertake such lab tests. Their results will help your physician better assess the significance of your disease and identify the most suitable treatment.
- What are the available exams?
- Should everyone undertake prognostic test?
- What are the advantages and disadvantages of taking additional prognostic lab tests?
- How can you deal with the psychological effects of your diagnosis?
- How can you manage the emotions that may arise?
- What can you do to cope with uncertainty?
Personal stories
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“The hematologist explained to me that I have this condition, Lymphocytic Leukemia. He told me that the diagnosis is good, and we have a very slow progression that can take up to 15 years… I was definitely in shock the day I found out. But I can’t say I panicked too much, because of the way he explained it to me, telling me that I was lucky in my misfortune for having this type of cancer”. (Helen)
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The first tests showed the type of CLL, and I have to say that when my hematologist had all the data concerning the diagnosis, she told me quite early on that it is a type that has a really good prognosis. From the start, she was very reassuring. Twelve years have passed since then, meaning that this doesn’t bother me anymore. I think that it’s something you have, which, as I understood from my own experience, won’t cause any major problems. (George)
Podcasts
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Prognosis Podcast in English
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Prognosis Podcast in Greek
Videos
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3:45
Chronic Lymphocytic Leukemia Biomarkers
Stage · Treatment
Treatment
Signs of CLL worsening include changes in the symptoms, the results of blood tests or certain findings from your physical examinations. These might indicate the initiation of treatment. A variety of factors will be considered in the decision of the appropriate treatment. The development and introduction of more effective, targeted treatments through the years has improved the lives of people living with CLL. However, the start of treatment might pose challenges and entail a variety of emotions.
- When might your doctor suggest treatment?
- When deciding treatment, what should you let your doctor know about you, besides your medical profile?
- What are the available treatments?
- What are some of the emotions and thoughts of people receiving treatment for CLL?
Personal stories
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“I visited him after Easter, and he told me that we are going to start treatment in the summer. We started the treatment, and it went very well, after some years I started another treatment, and it went very well too, painless. That was nothing to me, I was going out normally. Generally, it doesn't interfere with my life, I didn't change my life, it’s like I don't have this disease”. (Chris)
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“Science has progressed, one shouldn’t give up. I have CLL for 13-14 years and I am really well. It hasn’t affected me in any way. Even when I had chemotherapy, it was painless. In the summer I went to the hospital for chemotherapy and then I would go swimming as if nothing happened”. (Jim)
Podcasts
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Treatment Podcast in English
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Treatment Podcast in Greek
Videos
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4:19
Chronic Lymphocytic Leukemia Treatment
Stage · Clinical Trial
Clinical Trial
Clinical trials research topics like:
“Is a treatment safe? Does it have fewer side effects? Is it more effective or better in any way than the standard treatments?”
They usually evaluate new drugs, different combinations of existing ones, or new ways of administering standard treatments (e.g., taken as a pill instead of intravenously). Clinical trials allow you to access new therapies or new treatment regimens. At some point along the disease trajectory your doctor may suggest you take part in one, which might cause mixed feelings and ambivalence.
- Why should I consider participating in a clinical trial?
- Are there any risks or potential benefits?
- What is the process?
- How can help you deal with ambivalence and take the best decision for you?
- What is the experience of participating in a clinical trial?
- What should you expect in the future?
- How can you deal with the psychological effects of your diagnosis?
Personal stories
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“[My hematologist] told me that a new medication was launched in the United States that hadn’t been available in Europe or Greece, and that he would like me to participate [in the clinical trial]. He gave me the protocol, I read it, I asked around, my son asked around [about it as well] (…) It didn’t have any side effects. Anyways, I was feeling psychologically well. I thought “I’ll be fine with this drug”. It required a few more visits because I had to stay in the hospital for one or two days every time they changed the dose in order to undertake regular blood tests. Because the drug companies who offer this medicine to you want to see the results”. (Johanna)
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“When my lab results got worse, she told me about a new chemotherapy. I was the first one who did it in that hospital. I decided to participate because she made me realize that I shouldn’t be afraid. At first, I looked it up, I went to other hematologists and some of them told me: “Don’t do this, since it’s not something tested, don’t do it, go through the old process”. But after discussing it further I was convinced, because I really trust my hematologist, I was convinced and did it. We agreed to do 12 chemotherapies, but after 9, she told me we have the desired result. She told me that I didn’t need to do more therapies and since then I am under active monitoring every three months. (Elisabeth)
Podcasts
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Clinical Trials Podcast in English
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Clinical Trials Podcast in Greek