Rather than stimulating immune cells to more effectively battle cancerous tumors, treatment with the protein interleukin-12 (IL-12) has the opposite effect, driving these intracellular fighters to exhaustion, a Mayo Clinic study has found.
Although the LC Global Patient Survey indicated that awareness of lymphomas has increased, misdiagnosis remains the same from the 2010 results. It is critical to educate Practitioners and General Oncologists about lymphoma to reduce this threat to patients.
Misdiagnosis, incorrect medication and treatment, and time to correct diagnosis, are serious issues that still plague the healthcare community when dealing with patients who exhibit lymphoma symptoms.
Unique mutations were found during the sequencing of Burkitt lymphoma, a rare and aggressive form of lymphoma. A total of 70 mutations were found when a Burkitt tumour was mapped by scientists at Duke Medicine.
The Bulgarian Lymphoma Association was established in 2006 at which time it started its work in patient advocacy. For some years, the association struggled with authorities to ensure patients with lymphoma received the best treatment possible
as the government wanted to avoid using expensive therapies whenever possible. To combat this, the association attempted to raise the voice of the patient through co-establishing one of the biggest patient organisations in the country — the National Patient Organisation. Through this initiative, the Bulgarian Lymphoma Association has been able to expand their activities and combine their efforts with many other patient organisations.
In addition, a member of Bulgarian Lymphoma Association has participated in the work of the Commission for Patients’ Rights at the Ministry of Health and a representative of the association has been admitted to the sessions of the Health Commission held in parliament. Throughout all these initiatives, efforts have continued to try and increase awareness about lymphoma, its symptoms, how it is diagnosed and its treatment.
Promotion of stem cell donation
One of the initiatives that the Bulgarian Lymphoma Association has been championing is the importance of stem cell donation. When work started on this two years ago, only 400 people, mostly doctors and relatives of patient with lymphoma and leukemia, enrolled with the Bulgarian registry as potential donors. As a result, an awareness campaign was undertaken in the media (television, radio, print). The goal of the campaign was to explain the importance of finding a match for a patient needing a transplant and how it was simple for any person to donate.
The campaign made use of folklore and historical symbols that would be recognisable to any Bulgarian. The image used was a boy and a girl made of white threads. This image was distributed throughout Bulgaria: it could be seen on the subway, in leaflets at concerts, on posters on buses and many other places reminding people that the red colour was missing because of the lack of blood samples in the Bulgarian registry. The campaign explained that stem cells can be taken from the peripheral blood, not only from the marrow.
Two radio spots were also created for use in morning, noon and evening broadcasts. These spots were aired by 11 radio stations. Posters promoting stem cell donation were placed in the universities. The Bulgarian Lymphoma Association also started working in co-operation with the medical student organization. As a result of these efforts, a chain of medical laboratories with branches in all major cities in Bulgaria agreed to take blood samples from volunteers and send them by courier (DHL) to the registry based in Sofia. DHL did this for free.
Along with medical specialists, the Bulgarian Lymphoma Association visits companies to explain the use of stem cells for transplantation to employees and take blood samples from those who want to register as potential donors.
The brochure promoting stem cell donation is distributed in medical laboratories and haematology clinics throughout Bulgaria. The Bulgarian Association is also trying to promote the use of buccal swabs for the extraction of DNA. Using buccal swabs will make becoming part of the registry of potential stem cell donors much easier.
This year, the Bulgarian Lymphoma Association started promoting the idea of donating umbilical cord blood. Many young Bulgarian parents are tempted to preserve their baby’s umbilical cord blood for use by their child, if needed, when he or she becomes an adult. But what parents do not know is that it will likely not be enough for an adult and that there exists a national bank for umbilical cord blood to which they can donate the umbilical cord blood of their baby. This material can then be used years later together with the material donated by others for saving the lives of patients with a blood cancer, maybe even their own child. The Bulgarian Lymphoma Association believes that many young and socially engaged people, upon becoming parents, will donate their baby’s umbilical cord blood.]]>
In chronic lymphocytic leukemia (CLL), tumour cells do not form stable cognate interactions with CD4+ and CD8+ T cells for a number of reasons including an impaired clustering and activation of lymphocyte function-associated antigen-1 (LFA-1).
Based on the findings of a phase II study, the indication for lenalidomide in the U.S. has been expanded to include patients with mantle cell lymphoma (MCL) whose disease has relapsed or progressed following the use of two previous therapies including bortezomib.
Lymphoma is still a very misunderstood and misdiagnosed cancer despite the fact that so many people are currently living with it around the world. The signs and symptoms of lymphoma mimic other less-serious diseases, and it often misdiagnosed.
Despite being the one of the fastest growing and fifth largest cancers globally with more than 1 million people currently diagnosed, lymphoma is not on the mind’s of doctors.
The UK government has confirmed its special funding arrangement for certain cancer drugs will continue until March 2016. Click here to read more.]]>
A phase III trial examining the use of idelalisib in patients with chronic lymphocytic leukaemia (CLL) will be stopped early as an interim analysis demonstrated significant improvement in progression-free survival, the primary end point.
A new treatment option, of ofatumumab (Arzerra) in combination with an alkylator-based therapy, has been approved in the U.S. for patients with chronic lymphocytic leukaemia (CLL).
The results from a phase II multicentre study in which older (≥65 years), previously untreated patients with chronic lymphocytic leukaemia received a combination of pentostatin, cyclophosphamide and ofatumumab were presented
Results from the phase II trial REAL07 were presented at the 2013 American Society of Hematology 2013 annual meeting. The trial was designed to demonstrate an improvement of overall response rate of 15% in patients receiving LRCHOP21
Ibrutinib has been granted an orphan designation by the European Medicines Agency for the treatment of follicular lymphoma (FL).
In this video question-and-answer session, Dr. Steven Horwitz, a medical oncologist at Memorial Sloan Kettering Cancer Center, answers questions about different types of lymphomas
Adolescent girls treated for Hodgkin lymphoma (HL) are at considerable risk of developing breast cancer, based on results from an observational study. This study was undertaken in Germany and was based on long-term observation of 590 female patients from German-Austrian paediatric clinical trials undertaken between 1978 and 1995.
Patients living in the USA who have chronic lymphocytic leukaemia (CLL) now have a new treatment option with the approval of ibrutinib (Imbruvica). The Food and Drug Administration approved the use of ibrutinib in patients
Numerous ways to keep both those with lymphomas informed as well as the lymphoma community engaged are used by the Lymphoma Association in the UK. Heading up a team of seven, Pierre du Bois, Head of Information and Communications, is responsible for the communication needs of the association.
These include the website, social media, press, a quarterly magazine as well as an e-newsletter that goes out every two months, patient information and conferences, branding and advocacy.
Benefits of Social Media
Pierre and his team make use of Twitter, Facebook and YouTube to keep in touch with the lymphoma community.
“We try to have a two-way conversation with our supporters but also use it to promote what we do or to support community fundraisers.” The team usually tweets five to 10 times a week and posts on Facebook about five times a week. Pierre and the team will use it to let people know about the charity and great things people do to support people affected by lymphoma.
The team will tweet about what’s going on in the news as it relates to lymphomas as well as advocacy campaigns such as those undertaken by the Cancer Campaigning Group, a coalition of national cancer-related charities, and Cancer 52, an alliance of more than 60 organisations that represents less common cancers.
The charity’s use of online video has really taken off in the past few years and the number of views of health information, patient experience and fundraising stories films in the association’s YouTube channel has increased eightfold in the past three years.
Assessing Use of Resources
Using Google analytics and other website tools, Pierre and his team keep tabs on what resources people use online. The association’s e-newsletter, which goes out at least once per month, has an average open rate of 40 per cent. The association also publishes a quarterly magazine, Lymphoma Matters.
“We carried out a comprehensive reader survey a while ago in which readers told us they were particularly interested in articles about the treatment for lymphoma, research, patient experiences and stories explaining lymphoma subtypes,” he said. The magazine is sent to 11,000 people every three months.
Finding Out About Events
To help patients and their caregivers find out what’s going on in their area, the Lymphoma Association has an interactive map on its website. By entering a postal code and the distance a person wishes to travel, the map provides information on events taking place in that area. Generally, these events are association support group meetings but also include fundraising activities, patient and carer conferences, and meetings being held by other independent haematology support groups. Keeping the interactive map current is what makes a feature like this a success.
While the association had to pay a web developer to set up this feature, it’s free to maintain as open source software, Dupral 7, is used. Dupral 7 is a content management system. Supporters who organise an event can upload it to the website but it will only become visible once it’s been approved by an association staff member. If you’d like to contact Pierre to find out more about this feature, please email him at email@example.com.
Buddy Scheme to Help Others
The Lymphoma Association’s buddy scheme provides an opportunity for people to talk to others affected by lymphoma over the phone or by email. The buddy scheme is a popular resource, with almost 150 buddies currently in the association’s database.
Anyone wanting to become a buddy is screened first and then undergoes training. Based on the needs of the patient, the association tries to make the appropriate match.
Each year, the Lymphoma Association holds three one-day patient and carer conferences. One of the conferences is about lymphomas and the other two focus on blood cancers. The ones on blood cancers are hosted in association with Leukaemia CARE.
Topics that are usually included are new and future treatments, side effects and the emotional impact of lymphomas as, based on surveys, they are the ones attendees are most interested in. The conferences include breakout sessions as well as patient speakers.
Attendees at the conferences are primarily those who have had lymphoma for some time rather than newly diagnosed patients. To reach out to newly diagnosed patients, the association works closely with nurses and haematologists to encourage them to refer patients to the association for information and support. The association provides information that healthcare providers can give to patients and there is a drive on the part of the National Health Service to ensure patients receive good quality information. With the help of a grant from Google, the association receives free online advertising which helps promote the website as well as the services provided by the association. For more information on how to obtain a Google grant, visit www.google.co.uk/grants.
The Lymphoma Association has a number of ways in which people can get involved and help raise awareness. One of them is the Great British Tea Break. Started in 2005, it is a fun way to raise money for the association. These events can be held anywhere such as a person’s home, school or college. Guests receive a cup of tea and a piece of cake or whatever the host thinks guests will enjoy and, in return, guests make a donation. To help set up a Great British Tea Break, hosts are provided with a fundraising pack that includes posters, leaflets, coin boxes and balloons. In 2013, 35 tea parties were held across the UK. To find out more, visit www.lymphomas.org.uk/gbtb.
Beacons of Hope Awards
The Lymphoma Association makes efforts to recognise the work of those who have helped people affected by lymphoma through its Beacons of Hope awards. Potential recipients, either groups or individuals, are nominated. Nominees can be a patient, friend, family member, caregiver, partner, fundraiser, health professional or a local hospital ward. To nominate someone, a form is completed which includes explaining why the nominee should receive the award. In 2013, 25 groups received a Beacons of Hope award. Awards are given to those who have raised awareness of lymphoma, those who have provided outstanding care and support, exceptional fundraising and anyone who has made a real difference in the lives of patients with lymphoma.
Some of the activities that led to an award in 2013 included a parachute jump undertaken by a 69-year-old woman which raised ₤5,500. Another award went to a teenager who wrote and sang a song to raise awareness about his friend with lymphoma. A video of the song was put on YouTube. Awards were given to nurses not only for excellent care but for also starting support groups. For more information about the Beacons of Hope awards, visit www.lymphomas.org.uk/boha.
Congratulations to the Lymphoma Association UK for their great work in lymphoma awareness and patient support!]]>
Where a person lives at the time of being diagnosed with diffuse large B-cell lymphoma has a positive effect on their survival. The study examined the relationship between the location of a patient’s residence and health outcomes.
Patients with diffuse large B-cell lymphoma (DLBCL) who achieve event-free survival at 24 months also have overall survival that is equivalent to that of the age- and sex-matched general population.
Patients younger than 65 years who have non-Hodgkin lymphoma (NHL) are less likely to receive prophylactic treatment for grade 3 and 4 neutropenia.
Until recently, France Lymphome Espoir (FLE) has relied heavily on volunteers as well its president, Guy Bouguet, to get things done.
“When you are a growing organisation, it means you have to do almost everything and anything,” said Guy.
Being a chief executive officer (CEO) comes with many responsibilities as Pru Etcheverry, CEO of Leukaemia & Blood Cancer New Zealand (LBC), can attest. “Every day is different but key responsibilities are income generation and financial management, leadership, brand building and positioning, service delivery for patients and families, and looking at organisational sustainability,” said Pru.
Pru has been CEO of LBC for 11 years. LBC was started 37 years ago. Initially, the organisation’s focus was on providing research funding for haematology initiatives. However, in 2001, LBC’s mission was amended to also provide patient support. LBC provides patient support for all blood cancers.
“Under patient support comes support, information, advocacy, awareness and everything and anything of what that means to patients. So, those are very big additions to what the organisation does,” she said.
LBC has grown to support this work with a staff of 18 from three when Pru first joined the organisation.
Pru is also involved in a number of other advocacy and patient support initiatives. One of them is CANGO which stands for Cancer NGO (non-governmental organisation) which Pru currently chairs.
CANGO is an alliance of eight cancer charities that work together to present a united voice to the Ministry of Health, Cancer Control New Zealand and district health boards on issues affecting New Zealanders.
“It’s been a really good grouping. We also try to ensure that we are supportive of and not competitive with each other’s fundraising and awareness efforts,” she said.
Another organisation Pru is involved with is Access to Medicines Coalition. This coalition believes that the New Zealand government has a responsibility to all New Zealanders to provide a funding system that results in increased access to needed therapies. Access to Medicines Coalition comprises patient advocacy groups for all diseases.
New Zealand Bone Marrow Donor Registry
LBC also operates the New Zealand Bone Marrow Donor Registry (NZBMDR).
“This registry facilitates searches for a donor when a patient needs a transplant in New Zealand,” said Pru. The New Zealand registry, like all registries, collaborates with registries around the world as donors may come from anywhere.
To facilitate the recruitment and matching of appropriate bone marrow donors, two staff members are based at New Zealand Blood.
“When donors come in and give blood or plasma, a conversation could be had with them if they fit the criteria to be bone marrow donors,” said Pru. An appropriate donor is someone who is aged between 18 and 40 years.
The goal of NZBMDR is to have 75 per cent of those in the registry of Maori or Polynesian descent and, while this target has been surpassed and there are 10,000 donors in the registry, what really matters is finding a match when it’s needed. New Zealanders have access to more than 23 million global donors, but those from other ethnicities are less likely to have a donor available. Hence, the need to acquire donors of Maori and Polynesian descent as well as other ethnic groups.
“People can still die waiting for a transplant if they don’t have a match, but increasingly now the donor metric for our Maori and Polynesian patients has equalled that of the rest of the population,” she said.
When there is no donor in New Zealand and one is found outside the country, it necessitates someone, usually a healthcare professional, flying to the hospital regardless of where it is in the world, collecting the marrow and bringing it back.
“So, it is literally a life and death situation. If we have two donors and one is in Australia and one in Europe, obviously we go for the one in Australia but it doesn’t always work that way as the best match is the most important criterion,” she said.
Importance of Effective Fundraising
Fundraising is an integral activity undertaken by most patient organisations and LBC is no exception. It holds a number of successful events throughout the year and raises most of its required funding from events and corporate donors.
“We have always deliberately tried to keep funding from the pharmaceutical industry extremely low for the reason that we are often lobbying for drugs – in the public arena or behind the scenes – and it’s important to be completely independent,” said Pru.
Pru noted that there are many other companies that while they may not have a logical connection to LBC, they want to get involved.
“There are hundreds of companies that could get involved and those that get involved love the opportunity of staff engagement,” she said. Among the companies supporting LBC are Suzuki, PriceWaterhouseCoopers (PwC), the latter who has been supporting LBC’s fundraising endeavours for about 10 years.
“We have the only New Zealand-owned insurance company – Fidelity Life – who has been supporting us for a number of years and they get very involved in our events, particularly their senior management team,” said Pru. Farmers, a New Zealand department store, is another strong and generous supporter.
To ensure successful campaigns, Pru said they need to be fun, easy to understand what they are about and what is needed. They need to capture peoples’ imaginations, be a bit different and not mainstream.
“I also firmly believe fundraising events are not for the faint-hearted. You don’t go into them if they are loaded up with costs and you need to achieve a certain amount to break even as I think that’s risky. If you can run an event with a low cost ratio that’s ideal,” she said.
Shave for a Cure
Shave for a Cure is one of LBC’s signature fundraising events. During this event, which has a dedicated week in April but can run all year, thousands of individuals, schools and businesses shave their heads in an effort to raise money for those diagnosed with a blood cancer or a related cancer. Funds raised from this event support the 10,000 New Zealanders living with a blood cancer or a related condition. For this year, as of April 16, 2,042 people have participated and NZ$1,364,000 has been raised. In 2013, NZ$1.4 million was raised. The event has been running for 14 years.
“It’s just so exciting seeing it unfold and seeing who takes part; it’s just really, really lovely,” said Pru.
People shave for different reasons: they may be shaving for someone they know, for the fun of it and to just get involved.
“A huge amount of people do it for somebody they are close to who has been diagnosed with a blood cancer,” said Pru.
Firefighter Sky Tower Stair Challenge
Another entertaining fundraising event is the annual Firefighter Sky Tower Stair Challenge. This year’s event takes place on May 17. The Sky Tower, located in Auckland, is the tallest free-standing building in the southern hemisphere with 1,103 steps that have to be climbed to reach the top. Not only do the firefighters climb the stairs, they also wear all their kit which weights 25 kg. 2014 is the 10th year that LBC is running the event.
Firefighters waiting to start
Firefighters starting the stair climb
“This year we will be running a record number of firefighters with 750 from about 185 brigades from around the country,” said Pru.
A great feature of this event is that the firefighters fundraise in their own community which results in greater awareness about the organisation and the cancers.
“The lovely thing is a lot of brigades come from around the country, some quite small rural areas where there are no high buildings to train in. It is both a physical and a fundraising challenge and they compete fiercely across both of those things,” said Pru.
And Pru knows something about the physical challenge as she did the stair challenge three years ago. “I think it’s the hardest thing I’ve ever done in my life,” she said. Not only did Pru climb all the stairs, she also wore all the gear that weighed a total of 25 kg.
Raising Awareness about Blood Cancers
To help raise awareness, LBC holds a week-long awareness campaign entitled Blood Cancer Awareness Week. This year’s event will run from November 3-9. While activities vary every year, they are primarily targeted towards the general public.
“The goal is to have a strong media presence that includes social media with a viral component,” said Pru.
In 2013, LBC ran a campaign entitled The Silent Treatment. The idea was to help raise awareness about an issue that people were not talking about – blood cancers. Those participating were asked to change their photo on Facebook by placing an X over their mouth, keep silent and write a post saying they were going silent so they would not be posting anything. At the end of the campaign, 4,500 New Zealanders had participated and their combined silence was 324,570 hours.
“The powerful piece of the campaign was the engagement in the campaign at 62 per cent and as a result of the campaign, we had a 58 per cent increase in our Facebook following that week,” said Pru. And, the campaign also resulted in people visiting LBC’s website and finding information. Pru anticipates doing a similar social media campaign for 2014’s event.
Education and Support Programmes for Patients and Families
Among the many services provided by the LBC is a patient support team. Comprising six registered nurses who have specialised in haematology, they perform a number of functions including helping patients understand their diagnosis, explaining to patients what will happen with the treatment they have been prescribed and providing assistance to those (including their families) who have to relocate to a bigger centre in order to undergo treatment. The nurses do not provide treatment advice.
While they do not do any actual nursing, the nurses will visit patients in hospital as well as their homes.
“People can also come and see them where we have regional offices,” said Pru. LBC has four regional offices. The nurses are part of LBC and are not funded by the government.
LBC runs education and support programmes and, in a given year, holds over 70 groups nationally. The events focus on all blood cancers not only lymphoma. Depending on the location in New Zealand will determine how specific the topic is.
“The smaller the area, the less specialised the group; the larger the area, the more specialised the group as there will be enough people attending to have a specific-disease session,” said Pru.
Events are held for children of parents who have been diagnosed with a blood cancer. These are run by a psychologist who is highly trained in the area.
“This is a really important group that we run every month and those children get a lot of benefit out of it,” said Pru. Children up to the age of 12 years can attend this event.
LBC is about to start running courses on mindfulness. Mindfulness is a state of active and open attention to the present, i.e., it means living in the moment and awakening to experience rather than letting life pass one by.
“We have been running them in Auckland and have found them to be immensely beneficial for patients and their families so we’re going to roll them out across the country,” said Pru. These courses run for eight weeks.
Impact of LBC on Lymphoma
Pru is encouraged that LBC is making a significant impact on lymphoma care in New Zealand.
“We cover all blood cancers and what we now have in place is the ability to run not only generic support or education meetings for haematology patients but also disease-specific ones in the larger urban areas,” she said.
The public awareness campaigns which for the last two years have made great use of social media have proven very successful for LBC in raising awareness.
LBC is involved in the Ministry of Health’s working groups for tumour standard evaluation. As part of the Ministry’s Faster Cancer Treatment programme, national standards have been developed for bowel, breast, gynaecological, lymphoma, head and neck, melanoma, myeloma, sarcoma, thyroid and upper gastrointestinal cancers.
Another way in which LBC makes an impact is through sponsorship of the Lymphoma Network Meeting of New Zealand, an annual event.
The purpose of this meeting is to review guidelines, research and the latest information from around the world and then develop guidelines. “The purpose of the guidelines is to ensure consistency in treatment across all centres,” said Pru.
Twenty people are part of this committee and include radiation oncologists, medical oncologists, haematologists and pathologists.
Education materials, diagnostic tools and continuing education programmes have also been developed for general practitioners.
While patient support, research, information and awareness are all important, advocacy is probably the most invisible and difficult to talk about but it is something that is done every day throughout New Zealand.
“It may be something small that LBC can take off a patient’s plate or something large that results in drug advocacy or even policy changes, just things that make it easier for patients,” said Pru.
Wishing LBC a very successful 10th annual Firefighter Sky Tower Stair Challenge! Also, many thanks to LBC for the wonderful work they do to help those with blood cancer as well as their families.]]>
Ofatumumab plus chlorambucil has been approved in the USA as a first-line treatment for patients with chronic lymphocytic leukaemia (CLL) who cannot receive fludarabine-based therapy.
In this randomised phase III study, the efficacy and safety of cladribine and fludarabine, two purine analogues, were compared. Patients (n = 233) with chronic lymphocytic leukaemia were randomised to receive cladribine,
The risk, localisation and timing of third malignancies in 3,122 five-year survivors of Hodgkin lymphoma were assessed. Patients in this cohort were diagnosed before age 51 years and received treatment between 1965 and 1995.
Research is underway in some of the smaller subtypes of lymphoma. This phase II, open label non-randomised study is evaluating the safety and efficacy of ibrutinib in those with relapsed or refractory marginal zone lymphoma.
As Chief Program and Communications Officer at CancerCare® in the USA, Brian Tomlinson has a lot going on. “I oversee all the mission programs. These include education, financial assistance and all of the clinical services as well as communications,” he said.
Brian joined CancerCare in November 2013. Prior to that, he worked at the Lymphoma Research Foundation for 10 years.
Responsibilities within marketing and communications include media relations, overseeing the organisations’ website, print publications, social media, the branding for the organisation and all the general communications that the organisation develops.
“There is a very large team that supports all this work. I have 11 direct reports and then there is probably another 40 people in the department,” he said. CancerCare employs about 90 people.
CancerCare was founded 70 years ago for two reasons. The first reason was to help people pay for their cancer treatment and the second one was to help the bereaved cope with the loss of a loved one.
“Seventy years ago, CancerCare paid their first bill which was $12.88 to Memorial Sloan Kettering for cancer treatment, a lot of money in those days,” said Brian. Today, the organisation still provides financial assistance as part of its mission.
According to Brian, the three components of CancerCare’s mission – financial assistance, counselling and education programs – are what make the organisation unique.
“From the perspective of providing financial assistance, what we’re seeing in this country is that organisations are shrinking the amount of financial assistance they provide. This is a real barrier for people to get the treatment and to adhere to their treatment,” he said. Consequently, the financial assistance provided by CancerCare makes a big difference.
CancerCare is the only organisation that provides free oncology social work services.
“Last year, we received 80,000 phone calls to our HOPE line (the organisation’s call centre),” said Brian. Every call that comes in is answered by a Master’s level certified oncology social worker. Counselling services are free and are provided not only over the phone but also in face-to-face group sessions, via the internet, as well as in one-on-one and group sessions.
The education programmes provided by CancerCare are accessible in real time, i.e., as they are happening, or by means of archived podcasts.
“Because of the internet and the regular telephone, we reach people in 97 per cent of all counties in the country,” he said.
While Brian has known about CancerCare for about 12 years before joining the organisation, he was not aware of the organisation’s reach.
“For an organisation that’s based in Manhattan, our reach is very extensive,” he said. Although based in New York City, CancerCare is a national organisation.
Excellent Financial Assistance Programmes
CancerCare has a variety of financial assistance programmes available. In a given year, the organisation provides $4-5 million towards cancer treatment-related costs, such as transportation expenses, and has a co-payment assistance foundation that provides another $20 million towards treatment costs.
“There are very specific programmes to help with different things. So, each programme has guidelines that outline the different eligibility requirements for that particular programme and there is an application process,” he said.
Donors may indicate how the funds are to be used. For example, some financial assistance programmes are for certain types of cancer, some are specific to a geographic area in the USA, and some that do not have such restrictions and thus provide CancerCare with greater latitude in how to dispense the funds. For example, CancerCare has a grant that is only for residents of New York City that covers a variety of items for those undergoing treatment regardless of their diagnosis or stage of disease.
Counselling Services to Suit All Needs
Counselling services can be obtained in person at one of CancerCare’s offices in New York City, Long Island, New Jersey and Connecticut. For those unable to come to one of the organisation’s offices, counselling is available over the phone.
“If we identify somebody outside of where they can physically come to get the free counselling, we try to find them free counselling within their local community. If that isn’t possible, then we offer them the opportunity to participate in telephone counselling,” said Brian. The counselling services offered by CancerCare are not just for the patient, they are for anyone affected by the cancer diagnosis.
When seeking counselling, most are seeking psychosocial and emotional support with a large portion focusing on bereavement.
The Connect Education Workshops™ run by CancerCare are one-hour sessions during which attendees can participate over the phone or online. Occasionally, the sessions may be 90 minutes in length. The sessions are led by leading experts in oncology who provide medical updates on various tumour types, both solid and liquid. There are also sessions on side-effect management as well as pertinent topics such as the Patient Protection and Affordable Care Act, commonly called the Affordable Care Act.
“These sessions are a reminder for people living with cancer, they are for those who are newly diagnosed as well as anyone who is affected by cancer,” said Brian. Updates are always provided from the major meetings such as the American Society of Clinical Oncology, American Society of Hematology and the San Antonio Breast Cancer Symposium.
In 2013, CancerCare ran 56 Connect Education Workshops and approximately 45,000 people participated in these live calls, either via phone or online. The number of people on each call varies depending on the topic.
“For the session on the Affordable Care Act, we had 3,000 people. If it’s a call looking at a lymphoma subtype like T-cell lymphoma, you might have 200 to 300 people,” said Brian.
The last 15 to 20 minutes of each workshop is devoted to answering questions. Those participating via the internet can submit questions throughout the call; those participating by phone, queue up and ask their questions. If a question isn’t answered, participants are told to send their questions to CancerCare who then gets them an answer.
The amount of time to plan these sessions varies but it usually takes a few months.
“One of the real benefits of this model for education is that while we have to secure physicians or speakers to talk at these sessions, we don’t ask them to travel, we don’t ask them to give up their weekend. All they need to do is sit in their office and have access to a phone,” said Brian.
The Connect Education Workshops are available to anyone in the USA and outside the USA.
“Anybody can dial in. So last year we had participants from 40 countries including Australia, Austria, South Africa, Saudi Arabia and Jordan,” he said.
Once the session is over, it is archived so anyone who missed it can still listen to what was presented. Sessions are available on the organisation’s website as well as through iTunes.
In addition to the counselling services, educational workshops and financial assistance, CancerCare also hosts a variety of support groups that are available via phone, online and in person. Each telephone support group runs three times a year and lasts for 12 weeks. Those wishing to participate have to register ahead of time as the number of participants varies based on the group topic and format. At the end of the 12 weeks if a participant is still in need of support, they may be able to participate in the next support group if there is no waiting list, or they can transition to an online support group or CancerCare helps them find a different service in their local community.
Currently, CancerCare has five telephone support groups for patients and two for caregivers and loved ones. Each telephone support group session lasts one hour.
Online support groups take place using a password-protected message board format (not live chat). These sessions are led by oncology social workers who offer support and guidance. Groups are held for 15 weeks at a time and group members must register to join. After completing the registration process, members can participate by posting in the groups 24 hours, seven days a week. In the course of a year, CancerCare runs approximately 90 online support groups.
The face-to-face group meetings take place in one of CancerCare’s offices. Topics are determined based on information gathered in CancerCare’s database. Each group has approximately 15 participants. For those living in an area where CancerCare does not have an office, the organisation then tries to connect them with a local resource.
“If we cannot do that, we encourage them to participate in one of our phone or online support groups. Basically, they will still get the help so long as they want it,” said Brian.
All social work services, whether online, group or face-to-face counselling, can be provided not only in English but also Spanish.
“Our HOPE line has Spanish-speaking social workers. We also have a translation service for languages beyond English and Spanish but this is primarily for verbal communications,” he said.
Printed Materials Available
CancerCare has approximately 90 publications listed on its website. Many of these materials go to health professionals who then disseminate them on behalf of CancerCare.
What is challenging is trying to keep the publications up-to-date, especially information pertaining to advances in therapeutic options.
“The information about coping, practical support and managing stress is a little bit more manageable as it doesn’t change so quickly over time,” Brian said.
Brian noted that Lymphoma Coalition members are more than welcome to make use of the psychosocial materials that are on the CancerCare website (http://www.cancercare.org/publications).
Congratulations to Brian and we wish you all the best in your new role. Thank you to CancerCare for the wonderful support you provide to all those affected by cancer and for sharing your resources.]]>
US scientists undertook a comparison for entries in Wikipedia concerning conditions such as heart disease and lung cancer and compared them with peer-reviewed medical research.
A phase II study was undertaken to examine the effectiveness of rituximab and lenalidomide in patients with chronic lymphocytic leukaemia (CLL) who had not been treated (treatment naïve).
In this video, Dr. Filip Janku, from the University of Texas MD Anderson Cancer Center, discusses the findings of a trial that examined the effect of sirolimus and virinostat in patients with Hodgkin lymphoma who
For the last 20 years, Maria Rita Grattarola has been involved with the Italian Association against leukemia-lymphoma and myeloma (AIL).
Prior to joining AIL, Maria Rita was a business teacher. Initially, she volunteered for AIL and over the 20 years Maria Rita has been involved with the organisation, she has worked in many different areas.
For the last 10 years, she’s been mostly responsible for organising patient seminars and patient groups.
Formed in 1969, AIL’s main objectives are to promote research and provide housing assistance, homecare and funding support for those in need. AIL is connected with GIMEMA (the Italian Group for Haematological Disease in Adults/Gruppo Italiano Malattie EMatologiche dell'Adulto) which undertakes research on behalf of AIL. AIL provides GIMEMA with funding, a non-profit research organisation comprising 150 haematology centres in Italy.
AIL’s national headquarters are in Rome but AIL has 82 branches spread throughout Italy.
“While we have a common logo, the same goals and national campaigns, we each do our own fundraising within our own territory,” said Maria Rita.
Importance of Volunteers
AIL has a large volunteer base of almost 22,000 people.
“Volunteers are our strength. They work in hospitals at the welcome desk. Many will help with fundraising campaigns such as Uova di Pasqua (Easter Eggs) and Stelle di Natale (Poinsettias Day); some will help in the houses AIL has for patients while others help with administrative tasks,” she said.
In addition to the volunteers, AIL’s national headquarters has a full-time staff of 25 people.
When it comes to putting the patient seminars together, Maria Rita has two colleagues to help her.
“In 2014, AIL will hold 14 patient seminars throughout Italy. These seminars focus on all haematological malignancies,” she said.
The seminars take three to four months to organise and entail AIL’s national headquarters contacting the branch in the city where the seminar is being planned to determine the location, catering and materials needed. AIL’s national headquarters has a medical team to choose the speakers.
“On average 100 people attend the seminars although as many as 250 can attend, depending on the topic,” she said.
AIL has two patient groups: one for chronic myeloid leukaemia (CML) that was constituted about four years ago and the second one for myeloproliferative diseases that are pH negative that was formed in January 2014.
During the year people do not meet in person but connect through an online forum. If there are patients with a particular need, AIL looks for a specialist who can talk about it. Each group does have its own medical team.
AIL also organises three patient seminars a year for both of the patient groups during which 10 to 12 haematologists are available to answer questions.
“For example, we had several questions about paediatric CML which is quite uncommon. AIL looked for a specialist who could talk about the disease,” said Maria Rita.
Housing Assistance for Patients
Travelling to receive treatment can be an issue not just for the patient but also the family.
“A mother with a baby needing a stem cell transplant may not be able to travel back and forth and may not have the financial means so accommodation would be provided,” she said.
Depending on the patient’s illness will determine how long a patient can stay in the accommodation provided by AIL. A committee determines who is eligible for accommodation.
Of the 82 AIL branches, 33 can provide housing.
While there are different types of housing, all patients will have their own bathroom facilities but share areas such as the kitchen and garden.
“We try to maintain the privacy of the family but also provide an opportunity where patients can connect with others,” she said.
AIL pays for the accommodation but patients prepare their own food.
In addition to providing these services to Italians with a blood cancer, AIL also provides assistance to immigrants.
“We have a lot of immigrants coming for treatment, especially from Eastern Europe and North Africa and AIL offers them support,” said Maria Rita.
AIL’s Home Healthcare Programme
The home healthcare programme provided by 44 branches allows patients to be followed by a healthcare team in their own home rather than remaining in hospital.
“Patients feel better if taken care of in their own home and it also reduces the cost of a hospital stay,” said Maria Rita.
The home healthcare team will include a haematologist, nurse, social workers and psychosocial volunteers. This team is able to perform transfusions and needed treatments. Key to the success of a patient staying at home is ensuring that the caregiver can take on the role and that communication is maintained between the home healthcare team and the patient.
For more than 30 years, AIL has raised money through Stelle di Natale (Poinsettia Day). Held for three days during the first week of December, the approximately 4,000 public squares in Italy are turned red as they are filled with poinsettias for sale. After the first week of fundraising, poinsettias continue to be sold in schools and churches.
“Between 700,000 and 800,000 plants are sold and the money raised is split between research and patient assistance,” said Maria Rita.
One of the many squares selling poinsettias
The other main fundraising event is Le Uova di Pasqua (Easter Eggs). Started in 1994 to see if it would be an effective way to raise awareness about blood cancers, it soon grew from selling a few thousand chocolate eggs to several hundred thousand chocolate eggs. Nearly all provincial capitals and several thousand squares participate in the event.
National Day Against Leukaemia, Lymphoma and Myeloma
This annual event is held on June 21, the first day of summer. In preparation, about one month before the event, AIL’s communications team reaches out to the public via television, radio and AIL’s website to let the public know the event is approaching.
“On this day all branches organise an event. Each year at AIL’s national headquarters a toll-free number will be set up and people can call in throughout the day and have their questions answered by eight of the most important haematologists in Italy,” said Maria Rita.
In addition to the national day, for the last six years, AIL has arranged a sailing event where a boat sails down either the eastern or western side of Italy.
“This year the boat will sail on the Adriatic Sea leaving from Trieste and stopping at various ports,” she said.
The sailing event is held over a 15-day period making between eight to 10 stops. Up to 30 people can board the boat for a one-day sailing excursion.
“Patients are invited to go on the boat where there are doctors and nurses and where there is no difference between people and they can relax and enjoy themselves,” said Maria Rita.
What is key in all of AIL’s efforts is to make sure people don’t feel alone and that there is someone replying to their requests for help and assisting them in becoming more aware of their disease.
“A patient who is more aware asks more questions,” said Maria Rita.
Many thanks to Maria Rita and AIL for taking such great care of patients with blood cancers as well as their families.
June 30, 2014]]>
Patients with cancer who live in a rural location in Australia are more likely to die than those living in an urban centre because they cannot access needed radiotherapy treatment.
Findings from a retrospective observational study that included patients diagnosed with haematological malignancies from 20 European countries showed that survival increased for most haematological malignancies.
A number of biomarkers have been identified as being predictors of overall survival in chronic lymphocytic leukaemia (CLL). However, given that there are numerous biomarkers with inadequate information regarding their prognostic value
To complement retrospective analyses of clinical trials, an analysis of prognostic factors and outcomes in an unselected population-based cohort of patients with peripheral T-cell lymphoma (PTCL) was undertaken.
This is the first in a series of articles examining the work undertaken by patient organisations to help those affected by WM. Waldenstrom’s macroglobulinaemia (WM) is a rare, slow growing blood cancer. Approximately three in one million people are diagnosed with WM every year in the USA.
In Europe, approximately five in one million people are diagnosed with WM each year. WM is classified as an orphan disease, i.e., one so rare that funds for research and enough patients for clinical trials are scarce. Treatment options for WM are often based on research undertaken in other disorders.
The European Waldenström’s Macroglobulinemia network (EWMnetwork), is an alliance of non-Hodgkin lymphoma (NHL)/WM patient organizations in European countries that is not focussed on the individual patients with WM but rather on advocacy for WM in general in Europe. It is a not-for-profit organisation that was formed in the Netherlands in 2009. WM patient organisations from 10 different European countries are currently affiliated with the EWMnetwork.
“The purpose of the EWMnetwork is to provide patients with WM, via advocacy, a strong voice within relevant European political and healthcare organisations,” said Marlies Oom. Marlies is the secretary/treasurer of the EWMnetwork and has been with the organisation since it started in 2009.
The objectives of the organisation are to:
“Our organisation achieves its advocacy objectives by being a member of, and working with, EURORDIS, ECPC and other appropriate healthcare organisations,” said Marlies.
EURORDIS (European Organisation for Rare Diseases) is an alliance of patient organisations that promotes research on rare diseases and the commercial development of orphan therapies. ECPC (European Cancer Patients Coalition) represents the interests of all cancer patient groups, from the more common to the rarer forms of cancer.
Keeping Affiliated Patient Organisations Connected
The EWMnetwork uses a number of ways to keep the affiliated patient organisations connected and engaged.
“Through the use of online activities, affiliated patient organisations can exchange information, best practices, etc., and communicate this to their national NHL/WM organisation,” she said.
Other methods for keeping affiliated patient organisations connected are newsletters and annual or biennial meetings with the affiliated national patient organisations.
Web Page for Every European Country
One of the recent developments by the organisation is the setting up of a web page for each European country at www.waldenstrom.info. These web pages can also be found on the organisation’s website at www.ewmnetwork.eu.
“The country page is aimed to help patients with WM and their families find other patients with WM in their own country so they can get in contact with them,” said Marlies.
A contact person receives a login to the country page and that person acts as a mediator in the process of starting a WM patient group in his or her country.
Benefits of Online Communities
The EWMnetwork also participates in RareConnect, a joint project of EURODIS and NORD (National Organization for Rare Disorders, USA). RareConnect provides online patient communities for those affected by a rare disease. At present, approximately 50 online communities are active on RareConnect of which WM is one.
Through RareConnect, each online community allows patients and their caregivers to exchange information and experiences as well as post articles. If requested, this information can also be translated into five languages (English, German, French, Spanish and Italian).
“The main issues members like to discuss are their experiences with symptoms, diagnosis, treatment and medications for their disease,” said Marlies.
International Workshop on WM
Since 2000, an international workshop aimed at health professionals has been held biennially to assist in the exchange of knowledge on all aspects of WM research and treatment. The last day of the workshop is directed towards patients; EWMnetwork supports this patient-doctor day. For more information about the forum, click here.
Challenges Facing Patients
The biggest challenges for patients with WM (and other very rare diseases) in Europe are access to needed therapies and reimbursement.
“There are therapies that have been proven to work in USA for WM but are not registered in Europe for WM due to the rarity of the disease. Registration is very costly and, for the pharmaceutical industry, not interesting as there are too few patients,” said Marlies.
Many thanks to Marlies and the EWMnetwork for their efforts in trying to help patients and their caregivers receive the information and care they need.
July 28, 2014]]>
An observational study was undertaken by the Nordic Lymphoma Group to determine the efficacy of different first-line therapies in patients with mantle cell lymphoma (MCL).
Idelalisib has been approved by the European Union for the treatment of patients with chronic lymphocytic leukaemia (CLL) and follicular lymphoma (FL). Idelalisib, an oral therapy, is an inhibitor of P13K delta, a protein that is overexpressed in many B-cell malignancies.
This phase II study examined the efficacy of lenalidomide in combination with rituximab plus cyclophosphamide, doxorubicin, vincristine and prednisone (R2CHOP) in patients with newly diagnosed diffuse large B-cell lymphoma (DLBCL).
The use of radiation therapy (RT) has been shown to improve 10-year survival rates in patients with stage I-II Hodgkin’s lymphoma (HL). However, the use of RT in this patient population declined from 56% to 41% between 1998 and 2011.
This is the third and final article in a series of articles examining the work undertaken by patient organisations to help those affected by Waldenström’s macroglobulinaemia (WM).
This is the second in a series of articles examining the work undertaken by patient organisations to help those affected by WM.
Waldenstrom’s macroglobulinaemia (WM) is a rare, slow growing blood cancer.
This study set out to determine that patients with relapsed or refractory aggressive lymphoma would receive the same benefit from gemcitabine-based therapy as from standard therapy with DHAP (dexamethasone, cytarabine, cisplatin) prior to autologous stem-cell transplantation.
Adults who had Hodgkin lymphoma (HL) as children are at increased risk of treatment-related cardiovascular (CV) events. In this study, 1,187 survivors of HL with a median age of 31.2 years were asked to complete a questionnaire that assessed their exercise behaviour.
Findings from a pooled analysis of central scan review in three multicentre studies showed that positron emission tomography/computed tomography (PET-CT) was more accurate than CT scanning when measuring response to first-line therapy in patients with follicular lymphoma (FL).
The effect of vitamin D deficiency (VDD) in elderly patients with diffuse large B-cell lymphoma (DLBCL) was examined.
Interim results from PROLONG, an open-label, two-arm phase III randomised study that compared ofatumumab versus observation in patients in remission following induction treatment for relapsed chronic lymphocytic leukaemia, were presented at the 2014 American Society of Hematology annual meeting.
The aim of this study was to determine the outcome in patients with either relapsed or refractory marginal zone lymphoma (MZL) undergoing autologous stem cell transplantation.
A re-evaluation of the clinical significance of extranodal disease among patients with diffuse large B-cell lymphoma (DLBCL) who were staged with positron emission tomography/computed tomography was undertaken to determine the prognostic impact of extranodal disease.
Results from the AETHERA Trial, a phase III, randomised, double-blind, placebo controlled, multicentre study, showed that the addition of brentuximab vedotin (BV) following autologous stem cell transplant (ASCT) resulted in longer progression-free survival (PFS) compared with best supportive care in those with relapsed or refractory Hodgkin lymphoma (HL).
The diagnostic and relapse biopsies, as well as clinical outcome data were compared in this study to determine the biology associated with resistance to first-line therapy in Hodgkin lymphoma (HL), as well as identify prognostic markers.
Until recently, patients with either lymphoma or most leukaemias living in Israel did not have a patient support group but that’s changing thanks to the efforts of Giora Sharf, the director of Flute of Light, and his team.
Until 2001, patients with lymphoma did not have their own patient support group in Japan. That changed when the mother of one of the founders of Group Nexus Japan was receiving treatment for lymphoma
Over the last few years, a number of therapies have received approval for the treatment of lymphomas that are not traditional chemotherapy.
This ongoing phase II trial examined the efficacy of rituximab when added to ibrutinib in patients with relapsed or refractory mantle cell lymphoma (MCL).
An analysis of outcomes in patients with mantle cell lymphoma (MCL) following failure of first-line treatment was undertaken.
Much discussion on the topic of biosimilars and the many different aspects that come into play has taken place.
The impetus for the founding of OHLB Kraujas (Oncohaematological Patients’ Association of Blood) in 2002 was the need to improve the availability of new therapies in Lithuania.
“Patients and doctors formed this community so there would be a voice to say that we need new medicines, we need modern medicines, we need innovations,” said Karolis Azukatis who helps out on many of the different projects undertaken by OHLB Kraujas.
Initially, when Karolis started working at OHLB Kraujas while still a medical student in 2011, it was only going to be for one project.
“It so happened that Ieva (OHLB Kraujas’s president) joined the organisation at the same time and we worked well together. So, I just stayed and started working on other projects,” said Karolis.
Ieva Drėgvienė got involved with OHLB after helping her husband get the medicines he needed to treat his chronic myelogenous leukaemia (CML).
“As a result of Ieva and her husband’s efforts, the treatments needed at that time for CML – second-generation tyrosine kinase inhibitors – were reimbursed for all patients,” said Karolis.
Once Ieva’s husband started to receive the treatment he needed and was improving, she decided to continue working to help others get access to the medicines they needed.
OHLB Kraujas has a five-member board of directors of which two are physicians (Professor and Dr. Laimonas Griškevičius, the head of the haematology centre in Lithuania, and Dr. Rita Čekauskienė, the head of the bone marrow registry centre in Lithuania), two are patients and Ieva who is responsible for the day-to-day activities of the organisation.
Four people, including Ieva and Karolis, work at OHLB Kraujas. The tasks performed by the other two employees include administration/project management and public relations.
Within the organisation there is an oncopsychology communication centre as well as a bone marrow donation centre. The purpose of the oncopsychology communication centre is to provide oncopsychological support to patients when they are in hospital and by phone once they have been discharged. These services are free of charge. Three oncopsychologists work at the centre.
The purpose of the bone marrow donation centre is to promote the donation of bone marrow.
“While the bone marrow donation centre is a separate entity, the same people work on the project – myself and one member of the board of directors,” said Karolis.
The main objective of OHLB Kraujas is to increase the availability of new medicines and innovations for patients with blood cancers as this is one of the biggest challenges facing patients in Lithuania. To this end, the organisation participates in a number of legislative initiatives.
“We play a role in the development of laws for bioethics, biobanks (repositories for human biological samples) and transplantation guidelines. This is somewhat unusual as other patient organisations don’t usually participate in legislative activities,” said Karolis.
OHLB Kraujas also participates in Ministry of Health working groups such as one for the reimbursement of therapies.
“From the beginning, we wanted to be an organisation that consisted of both patients and doctors so our voice could be heard at the Ministry of Health and in Lithuania’s parliament so we could tell them what patients actually need,” said Karolis.
While OHLB Kraujas has been somewhat successful in convincing the government to fund therapies in individual cases, the same degree of success has not been experienced when it comes to the development of new laws.
“At the moment, we are having a number of difficulties developing new laws for Lithuania’s transplantation programme,” he said.
Until recently, reimbursement for bone marrow transplantation was through a special programme that guaranteed, but not unlimited, financial support as it was viewed as a field of medicine that required different support compared with typical funding mechanisms in Lithuania.
“Now, the government is trying to change the payment system and pay for transplantation through the same process as the health insurance fund but there are difficulties. When applying, patients feel that they cannot predict how much money will be required for their full treatment,” said Karolis.
For patients who have been diagnosed with a blood cancer that is responding to the treatments approved and reimbursed in Lithuania, the government pays for everything including required diagnostics.
“If a patient needs one of the newer therapies or becomes resistant to the typical first- or second-line therapies, then there is a problem because we either have to try to buy the needed medicine for the patient or the patient has to buy it with his or her own money,” said Karolis.
With the exception of brentuximab vedotin, none of the newer therapies and therapy combinations that have been approved by the European Medicines Agency (EMA) for the treatment of lymphomas are reimbursed in Lithuania. The newer therapies and combinations that the EMA has approved are bendamustine, bendamustine plus rituximab, ibrutinib, idelalisib, idelalisib plus rituximab, ofatumumab and pixantrone. For more on the availability of therapies in Lithuania, see the Global Database Search on the LC homepage (www.lymphomacoalition.org) or go to the OHLB Kraujas website.
The other objectives of OHLB Kraujas include:
The creation of disease ambassadors came about as a result of patients feeling more confident about information that came from other patients who’ve had similar experiences.
“If a doctor tells patients something, they do not trust it as much as when hearing it from a person who has actually gone through it,” says Karolis.
OHLB has 16 disease ambassadors with each ambassador providing consultations to approximately 10 patients in a given year. Consultations are done via the phone or email.
In addition to the disease ambassadors, OHLB Kraujas is in the process of recruiting 70 volunteers to help out in hospitals as well as at OHLB Kraujas.
“The volunteers will provide patients with social support like helping them with their shopping,” he said. These volunteers will be based only in Vilnius.
Usually held on May 16 every year, the purpose of the Day of Blood is to raise awareness about blood diseases. It is held in Vilnius with attendance increasing each year: in 2014 180 people attended compared with 110 in 2013.
“During the day we have interviews on major TV shows and the press attends the event. At the event, we not only raise awareness about blood diseases but we also provide lectures on the different diseases, diet and psychological issues,” said Karolis.
Two parallel sessions are held during the one-day event: one for patients and their families and one for family physicians.
“The session for family physicians focuses on how to recognise the disease early and the care needed for these patients,” he said
While there are three treatment centres (Kaunas, Klaipeda and Vilnius) in Lithuania where patients with a blood cancer can receive treatment, only those obtaining treatment in Vilnius can receive help with accommodation.
“We don’t have the funding to provide accommodation in the other cities. Vilnius was also chosen because it’s the only centre where patients can undergo stem cell transplantation,” said Karolis.
Accommodation is provided at a hotel near the hospital where four rooms are always reserved for patients and their families. If there are more patients requiring accommodation, the hotel can provide additional rooms.
“Not all patients coming to Vilnius will have somewhere to stay so accommodation at the hotel is helpful,” he said.
While OHLB Kraujas pays for the accommodation, the patient is responsible for purchasing their own food and meals.
Educating patients about their disease and treatment options is key. To achieve this goal, approximately three training sessions are held each month with more than 30 sessions taking place in a given year. The topic of the session will likely determine how many people attend. Each session usually lasts 90 minutes.
“Usually between 10 and 20 people attend. If it’s a very rare disease, there may be fewer attendees. If the session is on myeloma, there may be 50 attendees as those patients are very active,” Karolis said.
The sessions are led by a specialist in the topic under review with OHLB Kraujas providing psychological training or training on diet as OHLB Kraujas has a dietitian who has specialised in the dietary requirements for haematological malignancies.
Recognising the importance of diet, OHLB Kraujas published a 300-page book about diet and cancer in 2014.
“It was written by doctors, chefs and oncopsychologists and has recipes as well as recommendations for the management of side effects,” said Karolis. The book is entitled What to Eat When You’re Sick with Cancer.
The oncopyschological communication centre within OHLB Kraujas helps patients deal with the psychological aspects of their illness. The centre, started in 2010, has three oncopsychologists who provide one-on-one counselling as well as group sessions.
“Almost every evening we hold group therapy sessions which can include such things as art or dance therapy,” said Karolis.
While it used to be challenging making people aware of the services OHLB Kraujas provides, undertaking some public relations initiatives has helped.
“Giving interviews with newspapers has led to articles being published about our patients and their experiences,” said Karolis.
Another awareness-building tactic has been the use of advertisements in all cities with patients saying they are free of cancer because they received one of the newer therapies. And, in hospitals, there are big stands with information about OHLB Kraujas.
Doctors also see the value of the work that OHLB Kraujas undertakes.
“They (doctors) are quite active in telling patients that if they need help in getting a certain treatment, they should get in touch with OHLB Kraujas,” said Karolis.
Congratulations OHLB Kraujas on this fantastic work and patient support. Thank you for all your efforts to help those patients and their families with a blood cancer receive the care they need.
March 30, 2015]]>
The seventh annual T-Cell Lymphoma Forum was held in San Francisco at the end of January. It provided a forum for researchers, scientists and clinicians from around the world to come together to provide updates and latest findings in molecular pathogenesis as well as potential treatment options for patients with peripheral T-cell lymphomas (PTCLs), cutaneous T-cell lymphomas (CTCLs) and natural killer (NK) T-cell lymphomas (TCLs).
Multiple prognostic variables were prospectively evaluated for 168 patients with advanced stage mycosis fungoides (MF) and Sézary syndrome (SS).
Analysis of diagnostic mantle cell lymphoma (MCL) samples from the Nordic MCL2 (n= 74) and Nordic MCL3 (n = 94) clinical trials showed that overexpression of miR-18b identified patients with a poor prognosis.
In this phase III trial, 487 patients with newly diagnosed mantle cell lymphoma who were not eligible or not considered for stem-cell transplantation were randomised to receive R-CHOP or VR-CAP.
One of the main goals of the Leukaemia Foundation of Australia (LFA) is to ensure people diagnosed with a blood cancer are aware of the support that is available to them.
“To achieve this, we set ourselves a goal of having face-to-face contact with 50% of all newly diagnosed patients across Australia which we did for the first time in 2014,” said Anthony Steele, Head of Blood Cancer Support at the LFA.
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