Article previously published in the Cutaneous Lymphoma Foundation's Forum Spring 2013 newsletter.
How long have I had CTCL? I don’t know. For many years I have had a skin problem and, living in London, saw various dermatologists who considered me “an interesting case” or treated me, with little or no success for eczema or psoriasis. Friends suggested a visit to the Dead Sea and a work colleague persuaded me to visit a Chinese herbalist. This resulted in me mixing various herbs and twigs each evening, adding boiling water and drinking the disgusting concoction with no change whatsoever in my skin condition.
Finally I was referred to my current consultant who, after yet more biopsies, confirmed CTCL. My wife has provided tremendous support and on hearing the diagnosis went on-line, found the CLF and contacted them. She was told “If you are in London get him in to see Sean Whittaker.” The reply was “That’s who he is seeing”. Over the five years since the disease was confirmed I have had sessions of PUVA, received localised low dose radiotherapy treatments and currently take a high daily dose of bexarotene (Targretin®). These, on their own and in combination have kept the disease under control. Professor Whittaker has discussed other options with me such as the use of interferon on its own or combined with bexarotene and other drugs such as vorinostat (Zolinza®). I have responded well to the radiotherapy and we have discussed the use of total skin electron beam therapy (TSEB); either using a full or low dose, which in a small sample of patients has, I understand, proved as effective.
Throughout, the CLF has been a great help, providing web-based information and patient forums allowing me and my non-medical family to obtain a good understanding of the disease and available treatments. There are, however, relatively few cases diagnosed each year in the USA and proportionately fewer in the UK. In my opinion, the current activities of the CLF are most useful to newly diagnosed patients and their family and friends. As time goes by, the CLF continues to provide a useful service, but once a patient’s disease is stable, treatments are working and they have come to terms with their diagnoses, they may no longer stay as engaged with the organization.
As a 60 year old, with the disease at Stage 1B, I take comfort from the possibility that new treatments may be found which will provide a respite or even a cure for me. Knowing that research is being carried out provides hope and encouragement even though the ultimate breakthrough may come too late for me to benefit personally.
I was impressed by the work of the CLF and, after serving on two of its sub-committees was asked, two years ago, to join the Board and take on the role of Treasurer. Continuing to provide education in relation to the disease is vital but individuals need to be encouraged to provide financial support to the Foundation. For those who have lived with the disease, researched cutaneous lymphoma via the website and attended forums, the most important next step is to know that research into alternative therapies is not being curtailed due to lack of funding. In my opinion, the CLF should maintain what they spend on patient and practitioner education, in real terms, but as funds allow should enhance its spend in supporting research.
The research does not necessarily need to focus on all embracing solutions. It can seek intermediate outcomes such as managing itch and other side effects of cutaneous lymphoma. It should also be acknowledged that looking for a solution to one problem can often provide an answer to others with the result that research may provide reciprocal assistance with other diseases.
I have been asked what types of research should CLF fund? I believe that it is appropriate for the Foundation to consider support for any research that the medical experts on the Board believe is realistic and viable. This could be bench research or patient orientated; perhaps considering the use of current treatments in varying combinations. The launch of the CLARIONS Grant Research Program is, in my opinion, a major step in the right direction.
If you would like to share your story, fill out this simple online form and a Foundation representative will be in touch with you soon to discuss next steps.
This is an automatic translation service and therefore the
Cutaneous Lymphoma Foundation is not responsible
for any potential translation inaccuracies.