myeloproliferative neoplasms news

MYELOPROLIFERATIVE
NEOPLASMS NEWS
CARING FOR
PEOPLE WITH
MYELOPROLIFERATIVE
NEOPLASMS AND
THEIR FAMILIES
FEBRUARY 2014
JANETTE’S GOT HER ZEST FOR LIFE BACK
Janette Elton has had all three of the most commonly
occurring MPNs over the last 16 years.
“A blood test picked up something wrong with my liver; I was
developing an illness but no one knew what it was.”
She was initially diagnosed with polycythaemia vera (PV),
then essential thrombocythaemia (ET) as well, and since 2006
Janette has had myelofibrosis (MF).
Finally, after going to hospital with severe vaginal bleeding,
a student doctor “put it all together” and got her to see a
haematologist the next day, which led to her diagnosis with MPN.
“On several occasions my haematologist told me I was his
toughest patient,” said Janette, 68, of Whyalla (SA).
“I wasn’t diagnosed when I should have been and I was
annoyed no one had picked it up earlier,” said Janette.
“It’s been a terrible trip and I’ve never been as good as I am now.”
“At that stage, it had been left too long. I was told anything
could happen to me. The red cells in my blood were so high and
increasing rapidly.”
Janette’s life was absolutely transformed when she started
taking ruxolitinib last year. She went from being housebound to
taking her first trip in 10 years.
Prior to her eventual diagnosis in 1997, aged 42, Janette’s wideranging symptoms baffled her GP and dermatologist.
A series of “little strokes” affected her sight and she had foot
pain. The rash on her face was attributed to allergies, her joints
were inflamed but she tested negative for rheumatoid arthritis,
and she had a splenic infarction.
“No one could make sense of these symptoms; I was tested for
quite a few things. I looked a mess and was really crook,” said
Janette.
Living at Berry (NSW) at the time, Janette travelled to Nowra
for a venesection every couple of months and was treated with
hydroxyurea, her only treatment for 10 years, along with aspirin.
In 2003, following the death of her husband, Janette moved to
Whyalla to be closer to her grandchildren and the hospital.
“I had started losing a lot of weight (eight kilos), was suffering
from malnutrition and going to the hospital a lot,” she said.
Over the next 10 years Janette said she “just got by”.
Continued on page 2...
IN THIS ISSUE
Ruxolitinib rejected by PBAC ........ 2
New mutations found in CNL......... 3
11 Qs: Dr Srdan Verstovsek ........ 4/5
My Journey: Denis Hickey ............. 6
Diary Dates ...................................... 8
Janette Elton with grandchildren, Hayden and Taylah Bennett, and the painting of her dog, Dudley, completed since taking up painting again.
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620- 420
MPN
News
Februarywww.leukaemia.org.au
2014
1
Just Briefly
RUXOLITINIB TO BE RECONSIDERED BY PBAC
Ruxolitinib (Jakavi®), a new drug for people with myelofibrosis,
was rejected for inclusion on the Pharmaceutical Benefits
Scheme (PBS) by the Pharmaceutical Benefits Advisory
Committee (PBAC) in July last year.
Ruxolitinib is the first available drug to treat the many debilitating
symptoms of myelofibrosis. Clinical trial results and reports
from people taking the drug show ruxolitinib increases quality
of life. It enables many people with myelofibrosis to regain their
independence and sense of control over their lives.
The Australian government subsidises the cost of listed
prescription medicines through the PBS, making them more
affordable for all Australians. The PBAC is the group responsible
for recommending to the government whether or not drugs should
be added to the PBS.
The PBAC recognises the potential benefits of ruxolitinib to
those with myelofibrosis but the cost of the drug, estimated to
be around $5000 per month, was not considered to be cost
effective by the PBAC and is why the submission by Novartis
was unsuccessful. Novartis has been offering the drug free-ofcharge, on a compassionate access program, while awaiting an
outcome by the PBAC. The drug will be resubmitted to the PBAC
for consideration in 2014 where negotiations can continue.
Several people affected by myelofibrosis made submissions in
support of the application last year, explaining how ruxolitinib
has helped them.
The PBAC and drug company need to negotiate to resolve this
issue so a future application ensures ruxolitinib has a chance of
PBS-listing, giving people affected by this debilitating disease
much needed relief not just financially, but physically, emotionally
and psychologically.
If you are taking ruxolitinib, or have been diagnosed with
myelofibrosis, you may choose to write to the PBAC to express
what access to this drug means to you, or to the drug company
regarding the importance of having the drug funded. If so, please
contact Samantha Soggee, Leukaemia Foundation National MPN
Coordinator: mpn@leukaemia.org.au.
About the PBAC
The Pharmaceutical Benefits Advisory Committee (PBAC) is an
independent expert body appointed by the Australian government,
comprising of doctors, health professionals, health economists
and consumer representatives. It recommends new medicines
for listing on the Pharmaceutical Benefits Scheme (PBS). No new
medicine can be listed unless the committee makes a positive
recommendation.
The PBAC meets three times a year (usually March, July and
November). When recommending a medicine for listing, the PBAC
takes into account the medical conditions for which the medicine
was registered for use in Australia, its clinical effectiveness,
safety, and cost-effectiveness (‘value for money’) compared to
other treatments.
Continued from page 1...
“You have to, you’ve got no choice really. You just handle things as
they happen. You go with the flow and adapt. That’s all you can do,
and you meet some amazing people on the way,” said Janette.
“I’ve started painting again and gardening. I can sit with my family
and chat and feel well and not be ill all the time. I just feel like a
different person,” said Janette.
She seldom went out and couldn’t even enjoy a meal with her
family because she felt so sick so often.
Last November she flew to Hobart with her granddaughter, Jessica,
to farewell one of her sons off to Antarctica where he is working.
She had three blood clots between 2006 and 2009, at one
stage half her body was covered in hives and she developed a
heart condition, which her cardiologist said was due to being
malnourished.
“In Hobart we had coffee, looked at the shops, went sightseeing
and just being with family was so good.”
When
her
haematologist
retired, her new doctor
prescribed radiation therapy
in 2011 to help reduce the size
of her spleen, so she could
eat, and a dietitian put her on a special drink to replace food.
However, as a result of the radiotherapy, Janette has had to have
transfusions of red blood cells, eight to date.
Janette said the Leukaemia Foundation had been a huge support.
I can’t believe the huge difference it
(ruxolitinib) has made to my life.
“Just the information they’ve
sent me. I don’t think the
doctor helped as much as
their information booklet*. The
doctors think you know, but
you don’t really understand.
“When you feel so sick, you don’t know what questions you
should be asking.”
Everything changed for Janette in August last year when she
started ruxolitinib on compassionate grounds, after previously
being knocked back for the clinical trial twice because her platelet
count was too low. Her response to the treatment was immediate
and life changing.
Janette said the hardest thing for her was the isolation – “not
knowing anybody with it (MPN)”.
“After years, the sickness stopped. I have so much more energy
and feel that zest for life again.
* Understanding Myeloproliferative Neoplasms (MPN) can be downloaded
from www.leukaemia.org.au.
“I can’t believe the huge difference it (ruxolitinib) has made to my
life. I’d like others to have the same opportunity. It’s been terrific.
In 2014, the Leukaemia Foundation will hold its first MPN
Telephone Forum – see page 8 for details.
2
“I joined a group on the internet and breathed a sigh of relief. It’s
so important that you don’t feel isolated. There’s help out there if
you look.”
Leukaemia Foundation MPN News - February 2014
Research Matters
NEW MUTATIONS FOUND IN PEOPLE WITH CNL
By Dr Linda M. Scott
Group Leader, Haematologic Malignancies
University of Queensland Diamantina Institute
Scientists have identified a new category of
mutation that occurs in most people diagnosed
with the MPN chronic neutrophilic leukaemia (CNL).
Until recently, the molecular basis of CNL development
was unclear although a few people with CNL
carried the JAK2V617F mutation, which is more
commonly seen in people with the MPNs essential
thrombocythaemia (ET), polycythaemia vera (PV) or
myelofibrosis (MF).
However, earlier this year, scientists at the Oregon
Health Sciences University (USA) identified a new
category of mutation that occurs in most people with
CNL. These findings have important implications for the
future management of this disorder.
Dr Linda Scott, top row centre, at an MPN support group meeting in Brisbane
The newly discovered mutations occur in a protein called where she answered questions about MPN research.
the ‘GCSF receptor’, which spans the cell wall of white
Drugs that can deactivate, or ‘turn off’, JAK2 or SRC have been
blood cells, as shown in the left-hand panel in Figure 1 below.
developed and approved for use in patients with blood disorders.
In people who don’t have CNL, this protein does nothing in the
JAK2 activity can be inhibited by ruxolitinib, which the Australian
absence of a hormone called GCSF, which is made by the bone
Therapeutic Goods Administration (TGA) has approved for the
marrow only when new neutrophils are needed.
treatment of MF.
When GCSF is produced and enters the bloodstream, it can
SRC activity can be blocked by dasatinib, a drug currently used in
only interact with the GCSF receptor, much like a key that fits
the treatment of another MPN, chronic myeloid leukaemia (CML).
only into its matching lock. This interaction triggers a response
inside the white blood cell, with two different proteins, called
Although cases of CNL are extremely rare, the Oregon group
JAK2 and SRC, each becoming activated or ‘turned on’. These
has shown that individuals with the common GCSF receptor
proteins then instruct that cell to grow and make neutrophils.
mutation may benefit from ruxolitinib treatment.
Genetic studies show 20 of the 21 CNL patients tested to date
have a mutation in the GCSF receptor that causes it to behave
as if GCSF is present when it is not. Two different types of
mutation were detected in this group (as shown in Figure 1’s
right-hand panel):
• a common ‘point mutation’ that only turns on JAK2; and
• a less frequent ‘truncation’ (shortening of the gene) that turns
on SRC.
Both situations result in many more neutrophils being produced
than the body needs, requiring the use of different drugs to
reduce neutrophil production rates to normal levels.
One such CNL patient took ruxolitinib orally for 160 days and
during that time his neutrophil counts reduced significantly.
Since then it has been reported that these counts have
continued to remain relatively low.
This observation provides a strong argument to initiate clinical
trials to fully determine the likely benefits to people with CNL of
treatment with either ruxolitinib or dasatinib.
For the original research study, by Maxson and colleagues:
New England Journal of Medicine, 9 May 2013 issue.
ABOUT CNL
CNL is classified by the World Health Organization as a MPN –
a category of disorders characterised by an increase of one or
more blood cell types without any change in the appearance of
the affected cells.
People with CNL make too many neutrophils – a white blood
cell that is an essential part of the immune system. In response
to a wound or infection, neutrophils move from the bloodstream
to the site of tissue injury where they release their internal
stores of powerful anti-bacterial proteins, ingest any dead or
dying bacteria in the area, and send out chemical signals to
attract more immune cells. As a result, neutrophils are a major
component of the pus present in wounds.
Figure 1.
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3
Research Matters
ELEVEN QUESTIONS
Medical oncologist-haematologist, Dr Srdan Verstovsek, is
Professor of Medicine in the Department of Leukaemia and
Director of the Clinical Research Centre for MPNs at the
University of Texas MD Anderson Cancer Centre (Houston,
USA). He spoke to MPN News while in Australia to speak
at the HAA scientific meeting last year. His clinical interest
is MPN, with a focus on developing new therapies. He is
principal investigator of more than 30 clinical trials and
renowned for heading the COMFORT studies.
1. What is your role working with people with MPN?
In 2004, I was a member of the Leukaemia Department at the
MD Andersen Cancer Centre, where I still am, engaged in an
MPN program, looking for medications and people willing to join
in the effort to find medications.
2. Why does this particular type of blood cancer interest you?
The situation with MPN was really bad; there was no therapy we
could offer. People were suffering and had very poor quality of life
(QOL). We were lucky, the timing was right with the discovery of
the JAK2 mutation in 2005 that boosted interest in MPN diseases.
Here was something new – a biological marker, something to target
with new medications. We joined forces with patients, the MPD
Education Foundation, industry and others to find the medications.
So far we have one approved and perhaps there are others to
follow. Hopefully we will find a cure but that’s a really high bar.
3. MPN is a rare cancer, how many people with MPN would
you treat in your centre each year?
In 2004, there were about 60 patients with MPN among the 1700
patients we saw every year. With no therapy, why would patients
come – just to get an opinion and go home? We set out to
change that and we did. In the last five years I have participated
in and led more than 40 different clinical studies for patients with
MPN. I now see four to five new MPN patients every week –
most of them with myelofibrosis.
4. Discuss the controversy around changing the name
of the disease from MPD to MPN. Why did World Health
Organization feel compelled to do this?
The change is from ‘disease’ to ‘neoplasm’, which indicates
abnormal growth of a cell that has a clonal marker (meaning the
cells all develop from the same cell line). The clinical outcome
of the different MPNs is different. We have benign (non-invading
cancer) neoplasms, like ET, and malignant (invading cancer)
neoplasms – aggressive myelofibrosis. The difference is what
they do to a patient and whether they affect life expectancy.
The common question from a patient in my clinic who has
myelofibrosis is: “do I have a cancer?” Well, yes. These are
cells that are clonal, they’re abnormal, they originate from one
cell, and they grow and affect the body. We can even consider
myelofibrosis as a version of a chronic leukaemia; it affects the
body, it affects the blood count. It’s a malignancy in my mind;
it’s a cancer. ET is different. So, it’s a complex issue and we’re
trying to resolve it as best we can.
5. Have the patterns of incidence and modes of diagnosis of
MPN changed in recent years?
This is a good question as it reflects what is happening in
everyday practice. There is no one test for myelofibrosis; there are
criteria. You need to have fibrosis in the bone marrow, abnormal
4
Leukaemia Foundation National MPN Coordinator, Samantha Soggee interviewe
physical findings (a big spleen), abnormalities in blood cell
count and blood chemistry. All this needs to be combined by the
physician to come up with myelofibrosis, so it may not be simple.
We can now provide a very good therapy. Jakavi® (ruxolitinib)
alters a lot of the problems we have with myelofibrosis including
improvements in big organs and overall QOL, perhaps even
improving overall survival of patients with advanced features.
There is incentive for a local doctor in the community to do a good
job in diagnosing these patients properly because the therapy is
there that can have a significant impact and change the overall
outcome for the patients. We’ve had a similar experience in the
past with a similar disease – MDS – where 10 years ago there
were no therapies and now we have three approved. So there
is, believe it or not, a higher incidence in the diagnosis of MDS
because people pay attention and do proper work.
6. What have been the most significant findings/
developments in the treatment of MPN in the past decade?
Discovery of the JAK2 mutation was the first indication of what
is biologically abnormal in myelofibrosis. We had a biological
marker for development of medications to counteract the
abnormality. What the JAK2 mutation does, and many other
mutations identified since 2005, is that they all contribute
in some way to the abnormality present in all patients with
myelofibrosis which is hyperactivity of intercellular pathways or
proteins called the JAK2 pathway. This has led to development
of JAK2 inhibitors that control signs and symptoms of the
disease, minimising the growth of the cells and eliminating
the inflammation which is why people lose weight, feel bad
and can’t walk. This has translated into clinical benefits for
Leukaemia Foundation MPN News - February 2014
Research Matters
8. How would you compare the funding available to research
cures for MPNs to cancer in general.
MPNs are rare and there are many subgroups including
myelofibrosis, ET, PV, systemic mastocytosis and many different
conditions. Funding is scare but it is slowly getting better in
recognition of the biological targets and medications that can be
developed to target abnormalities specific for MPN. Things are
moving in a positive direction. There are MPN-specific grants,
from the Federal granting faculties in the USA, to the patient-run
MPN Research Foundation in Chicago.
9. What are the main challenges to curing this disease
in the future?
Now we are only at the beginning – a cure is a very hard
task. We would like to eliminate the disease and for patients
to live a normal life expectancy without any evidence of the
disease. Remember, 10 years ago we did not even have any
medications to counteract basic problems with the disease.
Now we have the first block in place with ruxolitinib. We have
a lot more to do, with other target agents and anti-fibrotic
medications to try to attack the disease from multiple angles to
try to eliminate it. Bone marrow transplantation is the only valid
option for a cure but it is not an easy procedure.
10. What are the major issues faced by people with MPN and
how can people live well after a diagnosis?
e interviewed Dr Srdan Verstovsek for Eleven Questions.
patients – counteracting the enlarged organs and loss of weight,
eliminating night sweating, itching and low-grade fevers. In the
past we did not believe this was clinically relevant because we
are not eliminating disease, but we are making huge strides
in improving QOL and perhaps prolonging life – a significant
change from 10 years ago.
7. Can you tell us about ruxolitinib and the COMFORT trials
in the USA and other major trials/research you are involved in
to help find a cure for MPN?
There are 10 different JAK2 inhibitors in development and
more than 20 different studies on these. The most developed,
successful and approved one is ruxolitinib. The trials that led
to its approval were COMFORT-I and COMFORT-II. In one,
ruxolitinib was compared in a blind study to a placebo, and the
other was an open label study so patients were randomised
between ruxolitinib or best available therapy. Both studies had
similar findings. Most patients improved rapidly – in 6-8 weeks,
their spleen size within 4-6 weeks. Symptoms got much better –
aches and pains, fatigue, their ability to walk improved and they
gained weight. Now ruxolitinib is approved and for good reason.
Other JAK2 inhibitors and other medications are being studied.
There are about nine studies open at MD Anderson: other JAK2
inhibitors, which may be useful for particular groups of patients
such as those with a low blood cell count or failure to ruxolitinib;
medications that target other abnormalities in these malignant
cells that we have identified in the past; or studies that target
fibrosis that comes with the disease and we believe is a reaction
of the bone marrow to the presence of malignancy there.
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There are different types of MPNs. Some are benign and not
expected to affect life expectancy, like ET and PV. These
patients have issues with preventing blood clots in the legs or in
more serious areas like the lungs or liver. The goal of therapies
here is to prevent complications from having uncontrolled
disease in the blood cell count and enlargement of the spleen.
We mainly focus on preventing blood-clotting risk. It is a
different ball game with myelofibrosis. These patients have
really aggressive disease. Efforts are in place to counteract
more aggressive rather than more benign types of MPN.
What we learn from the more aggressive ones we will apply to
help us control and eliminate disease in more benign types.
This is already happening. With ruxolitinib now approved for
myelofibrosis, we now know what it does and now we take
this experience into PV. We are getting excellent results in
controlling the signs and symptoms of PV in a very safe way,
for a very long time. So, going from more aggressive to more
benign, to cover everybody, is the way to go.
11. What are the most promising clinical trials for MPN in the
world at the moment and why are they exciting?
We are only at the beginning so ruxolitinib is a good starting
point. With the other JAK2 inhibitors, it is very exciting. Three
others are at a later stage of development – Phase III studies
for possible approval. So we may have more medications at
our disposal to treat the patients, not only one. Other studies of
high importance are anti-fibrotic medications. Fibrosis appears
to be responsible for blood cell count abnormalities, spleen
enlargement and poor QOL. Having an anti-fibrotic medication
developed perhaps will be our next building block.
For a DVD of the entire Eleven Questions interview
with Dr Verstovsek, contact Samantha Soggee:
mpn@leukaemia.org.au.
5
My Journey
GETTING ON WITH LIFE WITH MASTOCYTOSIS
It was a friend who gave Denis Hickey the first hint
something was amiss, back in 2006.
“I had taken off my shirt on the way to the shower and she
exclaimed ‘what on earth is that on your back?’” explained
Denis, 70, of Tanunda in South Australia’s Barossa Valley.
“She said my back was covered in red blotchy spots which she
showed me in a mirror.”
“All I’d noticed was that my back was itchy sometimes….in the
early stages the itch didn’t drive me nuts.”
Denis went to his local GP right away but it was 12 months
before the condition was diagnosed.
“Nobody could work out what it was, they just didn’t have a
clue,” he said.
“My GP had never seen anything like it and referred me to a
skin specialist in Adelaide who I saw for 10 months before being
referred to a haematologist.
“On my second visit, he rang a fellow haematologist in
Melbourne, and I had a bone marrow biopsy which was sent
across to him. A few weeks later I was diagnosed with systemic
mastocytosis.
“I was told there are four or five different types of this disease and
that they are all rare, but mine was the rarest with an incidence of
one in 10 million!
“I was devastated, and the
itching got worse and so did
the redness which spread all
over my back and the tops of
the back of my arms and legs.”
Denis Hickey and his fishing mate, Rodney Wood, with 75 blue
swimmer crabs caught off St Kilda north of Adelaide.
“They make me a bit drowsy but I take them at night and I can
still do whatever I want to do, so I’m getting on with my life.
“I was born and bred near the sea and I’ve been fishing all my life.”
He usually goes fishing with his brother-in-law, Roy, and friend,
Rodney and their favorite spots are off the Yorke and Eyre
peninsulas. They go away for a week at a time, often staying at
an onsite caravan based at Minlaton.
I can still do whatever I want to do,
so I’m getting on with my life.
From there they can fish
either side of the Yorke
Peninsula and last year they
hooked 36 King George
whiting that averaged 50cm at
Port Victoria.
At the time, Denis was adjusting to retired life – fishing at every
opportunity and mucking around in his big back garden.
“I’ve never seen so many that were so big in all my life. We’d just
got onto a patch.”
“The one thing I have hung on to from the start is that
mastocytosis isn’t life-threatening, so I didn’t panic.
When he’s home, Denis loves to work in his veggie garden and
during the summer months he grows peas, beans, cucumbers and
capsicums. His specialty, however, are tomatoes – Mighty Reds.
“The best I can hope for now is a treatment to get rid of the itch.”
After his diagnosis in 2007, Denis went on prednisolone. After
18 months on this treatment, when he went to his specialist
for a routine check-up, a bone density test revealed he had
developed osteoporosis.
“I was on it (prednisolone) too long and then the rush was on to
wean me off the drug.”
Since then Denis has tried a range of different tablets, lotions
and ointments to minimise the itch, and was prescribed a
calcium supplement that he continues to take.
When MPN News interviewed Denis in late-2013, he had started
a new treatment.
“It’s a tablet which I take daily and I think it’s working,” said Denis.
“The previous tablets largely kept the itch at bay but now we’re
trying to make it go away or be minimal.”
Denis noticed a difference after just a few days on low-strength
doxepin, which he continues to take in conjunction with an
antihistamine, loratadine. After a month, the dose of doxepin
was doubled to two tablets.
6
“Me and my best mate, Rodney, have a competition each year
as to who grows the best ones, based on fruit size and quantity
in kilos, and I think I do,” said Denis, who estimates a harvest of
100 kilos with his current crop of 25 tomato plants.
“I use them to make tomato sauce using an old German recipe,
and relish and chutney. A couple of years back we made 120
bottles of tomato sauce and gave the lot away.”
When he’s in the sun, Denis says he has to cover himself
well because he is heat sensitive and burns easily due to his
condition. He also has discovered the importance of taking his
medication regularly.
“I had a situation where I went somewhere and forgot to take
my medication with me. When I got home it took a couple of
weeks to get back on track. I’ll never do that again. My treatment
and my scripts are now the first thing I put in the car when I’m
packing for a trip.”
Every couple of months Denis looks forward to attending a
regional MPN support group, organised by the Leukaemia
Foundation that meets alternately at Tanunda and Gawler.
Continued on page 7...
Leukaemia Foundation MPN News - February 2014
Living Well
MPN WELL COVERED AT LF CONFERENCE
By Nathalie Cook
The MPN component of the Leukaemia Foundation’s
Annual Patient Conference in Melbourne last October was
informative and encouraging.
Dr Ali Bazargan, consultant haematologist at St Vincent’s
Hospital, Melbourne discussed the MPN subtypes, clinical
manifestations of the Philadelphia negative MPNs and genetic
mutations associated with MPN. He covered the management
of ET, PV and MF, and risk stratification for treatment decisions
including MPN treatment and the importance of aggressive
management of cardiovascular disease (CVD) risk factors for all
MPN patients to reduce thrombosis (blood clot) risk. He talked
about new MPN medications (JAK2 inhibitors) and other agents
currently in clinical trials, the Dynamic International Prognostic
Scoring System (DIPSS) used to predict the likely path of a
person’s individual disease and guide treatment decisions in
MF, allogeneic stem cell transplantation in MF and issues post
transplant with graft-versus-host disease (GVHD).
He said the future is bright for MPN treatment, which is reassuring
and hopefully will translate into new and better treatment
options. The new JAK2 inhibitor, ruxolitinib, leads to quality of
life (QOL) improvements by reducing symptoms (splenomegaly,
night sweats, weight loss, bone pain) in PV and MF, but these
symptoms return within weeks of the drug being withdrawn. And
clinical trails are underway internationally to compare hydroxyurea
and interferon-a and for several new agents for MPN.
Continued from page 6...
“It’s wonderful to talk to the other people there and it also makes
me feel that there’s nothing wrong with me as many of them are
much worse off than I am.”
Before Denis started taking doxepin, he was offered a clinical
trial for a new IV treatment.
He chose not to participate in the trial because it meant a 100km
round trip to Adelaide three times a week for 18 weeks.
The Leukaemia Foundation’s National MPN Coordinator,
Samantha Soggee, then spoke about the effect of an MPN
on one’s QOL including disease symptoms, the psychological
impact of the diagnosis, uncertainty about the future and fear of
disease progression. She talked about side-effects of medication
and MPN-related fatigue including mental/intellectual fatigue.
Other topics Samantha covered were emotional and spiritual
issues, feelings of isolation associated with having a rare
disease, the impact of the lack of understanding by well meaning
people who say ‘you don’t look sick’, and the financial and
interpersonal burden of living with a chronic disease.
She discussed pioneering research by the Mayo Clinic’s
Professor Ruben Mesa into MPN-related fatigue, suggested
strategies to improve QOL, and spoke about the Foundation’s
many support services.
I gave the final presentation, on MPN and Nutrition, based on
my experience as an Accredited Practising Dietitian (APD) and
someone living with MPN (PV). I discussed the importance of good
nutrition, which can be empowering and helps us to stay as healthy
as possible and reduce/manage CVD risk factors because having
MPN increases the risk of blood clots. I also discussed strategies
for managing nutrition-related side-effects of MPN medication and
treatment, to ensure food intake remains adequate, and cautioned
against taking dietary/herbal supplements without consulting an
APD or medical practitioner as some supplements can interfere
with treatment or interact with medications.
“The drug only takes about 10 seconds to administer but I’m a
pensioner and with fuel prices, it just wasn’t viable.
“So instead of that, they put me on the doxepin tablets. I thought
I’d try this first. The trial is an option I still have and I may need to
do that down the track.”
For information on systemic mastocytosis:
Understanding Myeloproliferative Neoplasms (MPN)
information booklet available from www.leukaemia.org.au.
DENIS’ TOMATO SAUCE RECIPE
Place 5.5kg ripe tomatoes (the riper, the better) into
a bowl, sprinkle with 120g salt, let stand overnight.
Next morning, drain off and discard liquid, add
60g of peeled, chopped garlic, 450g chopped
onions, 850g sugar, ½ teaspoon cayenne pepper,
450g peeled and sliced Granny Smith apples,
and boil vigorously for at least an hour.
Strain through a moulie*. Scrape and use all the
residue that passes through the moulie, discarding
what is left in the device (mainly tomato skin).
To this mixture add 4 cups of Seppelt sweet spiced
vinegar and boil for at least an hour, until thick.
Bottle in 750ml bottles with cork stoppers. Makes
5-6 bottles.
* A device for straining seeds or skins from fruit or
vegetable purees or mixtures.
1800 620 420
www.leukaemia.org.au
Denis and his “best friend” Ruth Hood with bottles of tomato sauce made from
tomatoes he grows in his backyard.
7
Education & Support
DIARY DATES
NEW SOUTH WALES & ACT
Sydney Metro
6 Feb 2-4pm
Penrith Blood Cancer Education & Support Group
(also 6 Mar; 3 Apr; 5 May)
14 Feb 10am-12pm
Concord Blood Cancer Education & Support Group
(also 11 Apr; 9 May)
10am-12pm
Liverpool Blood Cancer Education & Support Group
(also 14 Mar; 11 Apr; 9 May)
26 Feb 11am-1pm
Westmead Blood Cancer Education & Support Group
(also 26 Mar; 30 Apr; 28 May)
27 Feb 2-4pm
Randwick/St George Blood Cancer Education & Support
Group (also 28 Apr)
7 Mar 10am-12pm
Artarmon Blood Cancer Education & Support Group
(also 14 Mar; 28 Mar; 30 May)
24 Mar 10am-12pm
St George Blood Cancer Education & Support Group
(also 26 May)
26 Mar 2-3.30pm
Randwick Blood Cancer Education & Support Group
(also 28 May)
Far North Coast
21 Feb 11am-1pm
Tweed Heads Blood Cancer Education & Support – Cancer
Information Centre (also 23 Mar; 18 Apr; 16 May)
New England
3 Mar 2-4.30pm
Armidale Blood Cancer Education & Support Group
(also 7 Apr; 5 May)
5 Mar 2-4.30pm
Tamworth Blood Cancer Education & Support Group
(also 2 Apr; 7 May;)
Mid North Coast
17 Feb 1-3pm
Port Macquarie Blood Cancer Education & Support Group
(also 17 Mar; 21 Apr; 19 May)
27 Feb 10.30-12.30pm Coffs Harbour Blood Cancer Education & Support Group
(also 27 Mar; 24 Apr; 22 May)
Hunter
4 Feb 10am-12pm
Newcastle Blood Cancer Support Group (also 4 Mar; 1 Apr)
11 Feb 11am-1pm
Muswellbrook Blood Cancer Support Group (also 8 Apr)
18 Feb 11.30am-1pm Taree Blood Cancer Support Group (also 13 May)
25 Feb 10.30am-12pm Port Stephens Blood Cancer Education and Support Group
(also 6 May)
Central Coast
25 Feb 2-3.30pm
Wyong Blood Cancer Education & Support Group
(also 25 Mar 29 Apr; 27 May)
27 Feb 10-11.30am
Erina Blood Cancer Education & Support Group
(also 27 Mar; 24 Apr; 29 May)
Illawarra & Shoalhaven
4 Feb 10am-12pm
Wollongong Blood Cancer Education & Support Group
(also 4 Mar; 1 Apr; 6 May)
West & Far West
4 Feb 10.30am-12pm Orange Blood Cancer Education & Support Group
(also 4 Mar; 1 Apr)
5 Feb 10.30am-12pm Dubbo Blood Cancer Education & Support Group
(also 5 Mar; 2 Apr)
6 Feb 9.30-11am
Cobar Blood Cancer Education & Support Group (also 3 Apr)
7 Feb 10.30am-12pm Broken Hill Blood Cancer Education & Support Group (also 4 Apr)
12 Feb 11am-12pm
Cowra Blood Cancer Education & Support Group (also 9 Apr)
12 Mar 11am-12pm
Parkes Blood Cancer Education & Support Group
13 Mar 11am-12pm
Mudgee Blood Cancer Support Group
21 Mar 10.30am-12pm Bathurst Blood Cancer Education & Support Group
Riverina
25 Feb 10.30am-12pm Griffith Blood Cancer Education & Support Group
17 Mar 11am-12.30pm Albury Blood Cancer Support Group
QUEENSLAND
13 Feb 10am
The Role of the Carer, ESA Village, Dutton Park (also
20 Feb Carer Burnout; 27 Feb Music Therapy; 6 Mar
Strategies for Coping; 8 May The Role of the Carer)
22 Feb 11.30am-2.30pm MPN Coffee, Cake and Chat, Brisbane (also 10 May)
Latest details are listed on our Education and Support Program
Event Calendar at www.leukaemia.org.au.
VICTORIA
Melbourne
7 Mar 2-4pm
27 Mar 5-7pm
29 Apr 10.30am-1pm
16 May 10am-12pm
Barwon South West
6 Feb 10-11.30am
12 Feb 1-2.30pm
18 Mar 1-2.30pm
19 Mar 1-2.30pm
3 Apr 10am-12pm
Gippsland
10 Feb 10.30am-12pm
12 Feb 1.30-3pm
17 Feb 1-2.30pm
19 Feb 1.30-3pm
20 Feb 1.30-3pm
Carers’ Program
MPN Education Program
Understanding Blood Cancer + Navigating the Healthcare
System
MPN Support Group
Geelong Blood Cancer Support Group (also 6 Mar)
Colac Blood Cancer Support Group (also 9 Apr)
Hamilton Blood Cancer Support Group
Warrnambool Blood Cancer support Group
Geelong Blood Cancer Education Forum
East Gippsland Blood Cancer Education Program,
Bairnsdale
South Gippsland Blood Cancer Education Program,
Leongatha (also 12 Mar)
Casey Cardinia Blood Cancer Education Program, Berwick
Central Gippsland Blood Cancer Education Program,
Traralgon (also 19 Mar)
West Gippsland Blood Cancer Education Program,
Warragul (also 20 Mar)
Grampians
20 Feb 10am-12pm
Ballarat Blood Cancer Support Group (also 17 Apr)
25 Mar 11am-1pm
Horsham Blood Cancer Support Group
Loddon/Mallee
12 Feb 10am-12pm
Bendigo General Blood Cancer Group
17 Feb 1.30-3.30pm
Mildura Blood Cancer Support Group (also 21 Apr)
SOUTH AUSTRALIA
10 Feb 10am-12pm
MPN Support Group, Northfield (also 14 Apr)
13 Feb 10.30am-12pm Southern Support Group, Reynella (also 13 Mar; 10 Apr; 8 May)
15 Feb 9.30am-3.30pm State Education Conference
24 Feb 10am-12.30pm Art therapy, Northfield (also 3 Mar; 17 Mar; 24 Mar; 31 Mar)
25 Feb 10.30-11.30am Northern Support Group (also 18 Mar; 15 Apr; 20 May)
26 Feb 11am-12pm
Strathalbyn Support Group, Cafe Rufino (also 19 Mar, 16 Apr)
28 Feb 10.30am-12pm RAH Carers Support Group, Aroma Café (also 28 Mar; 30 May)
25 Mar 10.30-11.30am Men’s Group (also 27 May)
31 Mar 10am-12pm
Barossa Support Group (also 26 May)
WESTERN AUSTRALIA
Perth Metro
11 Feb 10am-12pm
Perth Education Session (also 11 Mar, 8 Apr; 13 May)
17 Feb 1-2.30pm
Perth Blood Cancer Support Network (also 17 Mar;
14 Apr; 19 May)
25 Feb 4.30-6pm
Bassendean Leukaemia Foundation Accommodation
Support Group (also 25 Mar; 28 Apr; 27 May)
Bunbury
19 Feb 10.30am-12pm Bunbury Regional Education (also 19 Mar; 16 Apr; 21 May)
Peel
20 Feb 10.30am-12pm Mandurah Blood Cancer Support Network
(also 20 Mar; 17 Apr; 22 May)
28 Feb 1-2.30pm
Port Kennedy Blood Cancer Support Program
(also 28 Mar; 23 May)
NORTHERN TERRITORY
6 Feb 10-11.30am
Blood Cancer Support Group, Coconut Grove (also 6 Mar; 3 Apr)
MPN Telephone Forums are held on the fourth Friday of the month
(28 Feb; 28 Mar; 24 Apr; 23 May; 27 Jun) at 2pm for patients in
regional and remote areas, and metropolitan patients who have
difficulty accessing the Leukaemia Foundation’s regular education
activities. Contact Samantha Soggee on 03 9949 5825 or
mpn@leukaemia.org.au to find out more and to register.
OUR VISION TO CURE AND MISSION TO CARE FOR YOU
The Leukaemia Foundation is the peak body for blood cancer in Australia,
funding research and providing free services to support people with
leukaemia, lymphoma, myeloma and related blood disorders.
Our free services include emotional support, accommodation,
transportation and practical assistance. We also fund research into
cures and better treatments.
We receive no ongoing government funding and rely on the continuous
support of individuals and corporate partners to provide our services
and to fund our National Research Program.
8
To find out more about how we can help you:
Freecall 1800 620 420
Email: info@leukaemia.org.au
Mail: GPO Box 9954 in your capital city
Website: www.leukaemia.org.au
This newsletter has been produced through an unrestricted educational grant from Novartis Oncology. Leukaemia Foundation
Disclaimer: No person should rely on the contents of this publication without first obtaining advice from their treating specialist.
MPN News - February 2014