What is MY PCR survey…

A survey worth spreading…Kris

Dear PCR Campaign Supporters,

As many of you know, 9/22 was World CML Day, the date that symbolically represents the genetic change of Chromosomes 9 and 22 that causes CML. This also marks the one year anniversary of the “What is MY PCR” campaign. In honor of these two events, we are excited to announce the official launch of the PCR Campaign Impact Survey!

Our goal is to gather feedback from you as campaign participants to help us measure our impact and identify areas in which we can strengthen the campaign in 2014. Your voice is critical to shaping this campaign, and we want to hear your feedback! The survey is posted on the campaign website http://www.whatismypcr.org and we encourage you to share this opportunity within your networks as well.

The survey will be open from September 2013 to December 2013. At the conclusion of the survey, we will compile the results into a report in early 2014 to be shared with you and your networks. Currently available in English, Spanish and Thai, we will continue to add translations over the next two months as we receive them from the PCR campaign partners.

We look forward to receiving your feedback. Complete the online survey now!

http://www.surveymonkey.com/s/WhatIsMyPCRImpact

Best wishes for World CML Day,
From PCR Campaign Headquarters

Medivo Launches Free Mobile App for Monitoring Chronic Myeloid Leukemia (CML)

Just wanted to highlight this. I’m not endorsing it, because I haven’t used it, but I though readers may find it interesting…

CML Monitor Provides Innovative Method for Tracking Symptoms and Monitoring BCR-ABL Lab Test Results for Physicians and People Living with CML.

Medivo Inc., a health monitoring platform that regularly connects doctors, consumers and clinical labs, announced the launch of CML Monitor, a free mobile app for people living with chronic myelogenous (or myeloid) leukemia (CML).

This new app simplifies daily life for people living with CML by providing them an innovative way to easily and accurately track BCR-ABL laboratory testing results and symptoms while delivering reports to their physicians for optimizing treatment.

CML Monitor is available for iOS and Android devices. Watch a video or download the app here. (www.medivo.com/cml/)

The app provides testing reminders and also enables people living with CML to connect with participating physicians, who receive regular patient updates to make better-informed treatment decisions. Additional features include noting questions for doctors, documenting hospitalizations, creating custom symptoms and socializing with others living with CML.

“Monitoring disease response to therapy is one of the key requests of people living with CML,” said Dr. Jason Bhan, EVP and Co-Founder of Medivo. “With this new app, Medivo is able to help consumers track their progress and also help physicians more closely monitor response to therapy and changes in condition symptoms.”

The new CML Monitor app builds upon the success Medivo has achieved with its popular GI Monitor app, the leading mobile disease monitoring application for people living with IBD, and HAE Monitor app, which allows people with hereditary angioedema to easily track symptoms and deliver reports to their physicians.

CML, also known as chronic myelogenous leukemia, is a type of cancer that begins in the blood-forming cells of the bone marrow. It can move into the blood and subsequently spread to other parts of the body. The term “myelogenous” in CML refers to the type of cells affected by this cancer, which typically affects older adults.

Source: Medivo

http://www.medicexchange.com/news-article/medivo-launches-free-mobile-app-for-monitoring-chronic-myeloid-leukemia-cml.html

Leukaemia and Lymphoma Research Impact Day 2013

It was all about the ‘c’ word wasn’t it? No not cancer, the other one. Yes, CURE.

We had to wonder what Leukaemia and Lymphoma Research (LLR) were up to when it was announced they weren’t going to have an annual conference this year and instead have an Impact Day. What would the impact be? Were we simply victims of yet another marketing experiment to re-brand what we already knew? No. This was a day filled with hope, emotion, researchers, scientists, (the) Calendar Girls, volunteers, patients and the amazing staff at LLR. Credit has to be given to, Chief Executive, Cathy Gilman who has energised the charity, brought everyone together and invested in a challenging vision.

There was a distinct split between the morning and afternoon sessions and the morning documented how far blood cancer treatment had come. The day opened with the inspirational Daisy Turner, a transplant patient now in remission, who set the scene. I was privileged to have been asked to speak along with another patient Federica Nardella, a lymphoma patient. We provided the personal stories, first hand, for Dr Emma Morris and Professor David Grimwade, research scientists for LLR, who are the most engaging, lovely people you could wish to meet. We spoke about the magnificent treatment advancements, in particular the targeted therapies which are saving lives, like mine, and revolutionising the blood cancer battle. It was a humbling moment for me to be able to talk to an audience of fund-raisers and supporters whose efforts saved my life and given me a son. Only through the hard work of professionals like my consultant Charlie Craddock, Dr Emma, Professor David and Research Director of LLR, Chris Bunce, I got my life back. I’m just one voice, there are thousands. It’s that important.

It was fiercely obvious the afternoon was about business, not the dull stuff bathed in facts and figures, but where the charity is going next. Even though treatment has been revolutionised: more and more patients are being treated successfully, dare I say cured, the charity told us they are steadfast in not stopping until everyone is saved. I was particularly captivated by one of their mission statements which proclaimed, “We stop people dying from blood cancer“. Brave, bold and scary all at the same time. All of the work and methodology over the next 5 years is heading towards finding cures, making the lives of patients better and being daring. Yoda in the The Empire Strikes Back said, “Do or do not, there is no try” – whilst proving my geek credentials I also believe this is the direction LLR are taking. There is no middle ground here, they will either cure blood cancers or they won’t. If they don’t the progress made whilst trying is worth the effort and contemplation alone.

So at last we have a charity who are trying to do what is said in their literature: beating blood cancers. The room was invigorated, people filed out with renewed drive and determination. I felt like we were all part of something very special and what made this extra special was that there wasn’t a politician or bureaucrat in sight telling us we couldn’t do it. I don’t think they’d dare. There was grit and conviction and most importantly belief. Bravery too and the courage to make a real Impact on a perfect Day.

Me with the AMAZING Calendar Girls.

Me with with Dr Emma Morris.

Me with Federica Nardella.

Me on stage with Dr Emma Morris

Event: Leukaemia and Lymphoma Research Impact Day 13th April 2013

I’ll be speaking at this free event so please come and say hi if you spot me. Thanks, Kris

“We won’t be satisfied until every patient with blood cancer can live fully the life that they were given; a life where the diagnosis of a blood cancer has no impact.

In the 53 years since we started the journey to beat blood cancer, our mission has never been clearer: we stop people dying from blood cancer; we make patients’ lives better and we stop people getting blood cancer in the first place.

In 2013, thanks to the collaborative efforts of many throughout the world, survival has improved dramatically since research began in blood cancer, but there is still work to be done both in saving more lives and minimising the impact on the quality of life of patients before and after treatment.

Join us in London on 13 April to hear how we are doing, meet some of the amazing people involved and discover why there has never been a better time to make a positive impact on the world.”

Event details

Date: Saturday, 13 April 2013
Time: Starts at 9:00 am

Location:
Tower Hotel
St Katharine’s Way
London
E1W 1LD

http://leukaemialymphomaresearch.org.uk/event/special-events/impact-day-2013

FOI results on dasatinib for CML patients

I wanted to share the results of the Freedom of Information (FoI) request today. The results speak for themselves but it is concerning that there is such disparity between prescribed medication. For the East Midlands to have funded 74 cases of dasatinib and the East of England to have prescribed none is worrying. This means that depending on which part of the country you live the clinician you see will have a different opinion on the type of drug you receive, perhaps some don’t even bother with dasatinib because of the NICE decision. This has truly become a postcode lottery.

Whilst I am in favour of personalised treatment this level of disparity is not good for patients. We are finalising our Cancer Drug Fund document that provides patients and clinicians information on how to apply for drugs through the CDF. It saddens me to think that there are areas of the UK where patients are not receiving the full range of CML treatments but I will continue to do all I can to ensure that our voice is heard.

Kris

Trusts who have dasatinib on their approved list.

Number of applications for dasatinib on CDF

 

Speaking and remission

I had some good news recently. My CML is still on the retreat and currently at 0.005% – on the verge of being undetectable – this has taken 5 years. As well as my brilliant support network I have to very grateful for dasatinib and all of the other TKIs that are giving people their lives back. It spurs me on…

I’m very humbled to have been asked to speak at various events this year and I’ll keep you up-to-date with where I am and when. If you find yourself in the same place please come and say hi – you’ll find me looking somewhat bewildered wondering why on earth people want to hear me talk 🙂

12 March 2013 – Medical Management Services – Melanoma workshop – London – DETAILS

20 March 2013 – Medical Management Services – Melanoma workshop – Warrington – DETAILS

11 April 2013 – Leukaemia Care – Leukaemia Support Group – Worcester

13 April 2013 – Leukaemia and Lymphoma Research – Impact Day – London

25 April 2013 – Leukaemia Care – East Midlands CML Support Group – Leicester

3-5 May 2013 – CML Horizons (11th International) – Expert Marketplace: Using the Internet in advocacy – Prague, Czech Republic – DETAILS

15 June 2013 – Leukaemia Care – Annual Conference – Worcester

All my best wishes,

Kris

Sue Lusher’s story

I really enjoy receiving stories for the blog, it’s important we share our experiences and inspire others. Please keep them coming. Thanks for this one Sue. K

In 2009 during the winter time I started to have severe problems walking as my knees seemed to lock (I couldn’t bend them by 4pm). I contacted my GP and had a blood test the only comment that my GP made was to ask me if I drank alcohol as my liver test was running a little high. As I take amatriplaline I haven’t drunk since 1990, the two don’t mix.

In 1998 I sustained a severe back injury so I have taken medication for this since that time. I was given water retention tablets as my legs were very swollen I also had an x-ray on my knees which showed damage but I was told that I was too young for a knee replacement.

During the summer of that year I started to notice that I was getting lots of bruising all over my body and I can remember sitting on my bed looking at the bruising and thinking to myself I wonder if I had something like leukaemia. As my knees were a lot better I just thought that I just had arthritis and as the weather changed again I began having knee problems and would get to the point where I couldn’t walk by late afternoon.

In 2010 I went for a flu jab and got a dog as I intended to start walking to try to lose weight over that winter. I continued to bruise a lot and started to get very tired; the problem with my knees continued and again I couldn’t walk properly, this continued during the course of that year

In late September 2011 I went for a flu jab again which I always have as my partner has stage 4 chronic renal failure. As he has diabetes too he always has a diabetic check. During the time we were in with the nurse she took Tony’s blood pressure and I commented that I have never had mine checked so she did mine as well. It was very high but when she took it again it had gone very low so she asked me to keep a check of it and take it from both arms for the next two weeks which I did.

When I took the records into her she seemed a little concerned and as we spoke I showed her my hands which had developed lots of nodules which look like rheumatoid arthritis. She sent me for a blood test on 25th October 2011.

Approximately 4 days later my GP phoned me at home and as he usually wanted to speak to Tony I replied, “hang on I will go and get him” to which he replied, “no Sue its you I need to speak to”. “Your blood tests show that you have CML”, I asked a few questions and wrote down what he told me.

I did do what most people do and looked on the internet about the condition. The information seemed to be saying that if you have to get any sort of leukaemia then this was the one to get as it can be controlled well and could be maintained in the state it was diagnosed in, which I found reassuring.

I attended Dr Campbell’s clinic in Colchester Hospital on 14th November and as I was very keen to start treatment a bone marrow biopsy (BMB) was attempted that afternoon on my hip. Despite 8 attempts this was not successful so on the Friday 16th Dr Campbell took a bone marrow aspiration (BMA) from my sternum.

Once the results were received back I was entered into the SPIRIT2 trial and started on imatinib 400 mg. By 10th January my full blood count was: white cells 4.5. Hb10. Platelets 185.

13/2/2012 white cells 5.7. Hb 11.7. platelets 274.

13/3/2012 white cells 5.1. Hb 13.1. platelets 290.

11/6/2012 Wbc 6.9. Hb 11.7. platelets 282.

At six months into treatment I had a BMA from my sternum which was done by Dr Campbell and only mildly uncomfortable.

21/8/2012 Wbc 5.1 Hb 12.1 platelets 257

BCR-ABL/ABL ratio 0.07%

I was very pleased, well, that’s an understatement with this result.

19/11/2012 Wbc 5.4 Hb 12.4 platelets 316

I had another BMA again from my sternum which again was only mildly uncomfortable at 1 year, this showed I was still in remission.

I am due to see Dr Campbell again on the 13/2/2013 but have no reason to worry as I am feeling fine. As my results changed the issue with my knees has seemed to resolve and I no longer bruise like I did.

The treatment that I have received during this period of my life has been fantastic my consultant has been honest and very informative which I feel has been important to me. I have suffered with some side effects during treatment: severe cramps, periorbital oedema and diarrhoea but I have chosen to continue with the imatinib as I feel I have responded well to this treatment.

All through my treatment I have kept a daily diary which is now included in my medical notes which I will give my permission for anyone to read especially if it will help with any research.

Sue Lusher

Leukaemia Care UK

I think Leukaemia Care are a fantastic charity and they have been incredibly kind to me since my diagnosis. I’d like to pay them back just a little bit tonight and try and get their Facebook Likes up to 400 by the morning. They currently have 366. Finding these extra 34 Likes means they will be able to promote their messages much more effectively. Please help out. Visit the site and Like. Thanks. Kris

http://www.facebook.com/LeukaemiaCARE

Britain Against Cancer 2012 report

Recently I attended Britain Against Cancer, a one day conference in London where politicians, clinicians and patients come together to talk about the issues surrounding cancer policy in the UK.

I attended this conference as I wanted a chance to explain why CML patients need access to a wide range of treatments.  Regular readers will know that I am currently being treated for Chronic Myeloid Leukaemia (CML) with dasatinib. Whilst other treatments, including imatinib and nilotinib, are available having been approved by NICE, dasatinib is only available on the Cancer Drugs Fund (CDF).

I am concerned that, across the country, patients have variable access to dasatinib and other non NICE approved treatments through the CDF.  It is important that CML patients have access to a wide range of treatments as for some, neither imatinib nor nilotinib prove clinically effective or patients find the side effects too severe.  This is the reality for CML patients and I wanted to make sure that attendees at the conference were aware of this.

The first speech I heard was from the Labour Shadow Health Secretary Andy Burnham and what struck me most were his comments about the Cancer Drugs Fund (CDF).  The CDF is designed to give patients access to cancer drugs that have not been approved by NICE and this is the route that many CML patients take in order to access dasatinib.  In his speech Burnham explained that he did not support the continuation of the CDF and he did not view it as a funding priority for the NHS.

I disagree with this.  My personal experience of the CDF is that patients can receive drugs that they otherwise would not. If the CDF is removed and nothing is put in its place then there is a risk that access to CML drugs will get worse, not better.

I raised this issue with Andy shortly after his speech and explained that it is critical that patients have access to as broad a range of treatment options as possible.  He agreed that this is indeed important and requested that I write to him following this conference.  I will of course write to him and make this case in more depth.

After taking part in a session about including the patient voice where I highlighted the need for patients to be involved with cancer networks, we took a break for lunch.  Refuelled and refreshed I then heard from Sir Mike Richards who was the former National Clinical Director for Cancer and the now Director of Domain One of the NHS Outcomes Framework.  I explained to him that it was important that not only were the right treatments available, but that the NHS didn’t lose sight of treating rarer cancers such as CML.  Sir Mike agreed and pointed to the recent figures on CML, as reported on this blog post , which showed that the deaths from CML have halved.

We then heard from the Secretary of State Jeremy Hunt who gave a wide ranging speech that focused on the importance of improving patient outcomes and even covered dementia.  It was interesting to hear him speak so much about dementia, as it is expected that this will be a core focus of the Government in the run up to the next general election in 2015.  I managed to catch up with him afterwards and made clear my views about the importance of the CDF.  He told me that whilst the Government is very proud that 23,000 people have currently received treatment through the CDF, he could not yet give further details as to whether the scheme would be extended post 2014.  I intend to write to Mr Hunt to raise this issue again and to ensure that access to CML drugs is at the forefront of his thinking in the run up to the next election.

I found Britain Against Cancer to be a very rewarding experience and I welcomed the opportunity to express the views I raise on this blog, in person to politicians and key decision makers.  I am keen to use the momentum from this event to further my campaigning activity and I will continue to post details on this blog.    Kris

Meeting Labour Shadow Health Secretary Andy Burnham MP at the Britain Against Cancer conference.

LINK: All Party Parliamentary Group on Cancer – website

 

Report: deaths from Chronic Myeloid Leukaemia (CML) have halved

The National Cancer Intelligence Network (NCIN) have this week released a report which has shown that deaths from Chronic Myeloid Leukaemia have halved since TKIs were introduced in 2001.
The report states that “What’s even more promising is that, in the last four years, second and third generations of these drugs have been developed. We believe more and more CML patients have been receiving TKI’s and we’d predict that the improvements in survival should be even greater in the future” – However, we know of the challenges patients will face on long term access to dasatinib, especially with no firm long term commitment to the future of the CDF. If we take into account the success of these new drugs over the last 4 years I predict that survival figure will sky-rocket. More reason to ensure access to all of the drugs for everyone.
Kris

IMPROVED TREATMENTS FOR CHRONIC MYELOID LEUKAEMIA HAVE DRAMATICALLY INCREASED SURVIVAL

Survival for people diagnosed with Chronic Myeloid Leukaemia (CML) has risen by nearly half, with around 58 per cent of people surviving their disease for at least five years compared with only around 40 per cent in the late 1990s, according to a new report from the National Cancer Intelligence Network (NCIN), published today (Wednesday)*.

The improvements are largely down to a family of drugs called Tyrosine Kinase Inhibitors (TKIs) which have now become the standard treatment for the disease. The first of these was imatinib (Glivec), which was licensed in 2001.

The Northern and Yorkshire Cancer Registry and Information Service (NYCRIS), on behalf of the NCIN Haematology Site Specific Clinical Reference Group (SSCRG), looked at the rates of people in England getting, dying from and surviving a range of different blood cancers between 1995 and 2008. And it is the first national study in England to look at survival for different types of leukaemia.

For patients diagnosed with CML, researchers found that the chance of surviving the disease for at least five years after diagnosis rose from 41 per cent to 57 per cent in men and from 38 per cent to 59 per cent in women between the late 1990s and the early 2000s**.

CML is a relatively rare form of leukaemia*** that mostly affects older people, with around 700 cases diagnosed in the UK every year****.

Dr Robin Ireland, chair of the SSCRG at the NCIN, said: “It’s really exciting to see the enormous difference new drugs can make in treating cancer. And, as this new data shows, TKI’s can be considered a revolutionary treatment for Chronic Myeloid Leukaemia.”

“Basic research has given us a greater biological understanding of cancer tumours, which has led to the development of successful targeted cancer drugs that are now the first line treatment for CML. TKIs target cancer cells by blocking the molecules they make, which stops them from multiplying. These drugs have completely changed the outlook for patients with this disease and it’s the first example of our improved understanding of cell molecular biology leading to the design of a specific inhibitor of the disease.

”Dr Steven Oliver, Haematological Cancer Epidemiology Lead at NYCRIS and lead author of the report, said: “This report shows that, although the number of people developing Chronic Myeloid Leukaemia hasn’t changed much since 2001, survival from the disease has greatly improved.”

“What’s even more promising is that, in the last four years, second and third generations of these drugs have been developed. We believe more and more CML patients have been receiving TKI’s and we’d predict that the improvements in survival should be even greater in the future.”

“Chris Carrigan, head of the National Cancer Intelligence Network (NCIN), said: “Being able to link data on the diagnosis, treatment and outcomes for cancer patients allows us to identify where improved cancer care is having an effect on peoples lives. The improvements in survival demonstrated here highlight the difference that effective treatments can make.”

Notes

*Haematological Malignancies in England: cancers diagnosed 2001 – 2008.Note that analyses of deaths from blood cancers for 2001-2008 were also reported, along with 5-year survival figures for patients diagnosed with different blood cancers in 1995-1999 compared with those diagnosed in 2000-2003.

**Absolute change in CML 5-year survival rates, in England, 1995-1999 compared with 2000-2003. Male rates 40.7% and 56.9%; female rates 38.4% and 58.7%, in 1995-1999 and 2000-2003 respectively.

***Leukaemias are a group of malignant diseases that affect the production of white blood cells – the body’s guards against foreign cells and infections. The different types of leukaemia affect different organs and vary in how quickly they spread. Different types of leukaemia affect different age groups and there are some wide differences in survival found across the age groups in certain forms of the disease.

**** There were 710 cases of CML registered in 2010 in the UK (Cancer Research UK Statistical Information Team)The NICE guidance recommends standard-dose imatinib as the first-line treatment for CML.

Source: http://www.ncin.org.uk/news_and_events/improved_treatments_for_chronic_myeloid_leukaemia_have_dramatically_increased_survival.aspx