OCTOBER 2010
Walk your dog or cycle for CHOC
The Childhood Cancer Foundation (CHOC) is holding a fun walk
at Zoo Lake on 31 October. so bring your best friend along - on a
lead of course - and maybe a picnic, and enjoy the day.
There will be 4, 8 and 12 kilometre walks
to choose from and pre-entries will receive
a CHOC wristband free.
After you have entered the event at
www.enteronline.co.za you can visit
www.royalcanin.co.za and register your pet
free.
Cyclists
The 2009 CHOC Cow Challenge will be
taking to the streets for the Momentum
94.7 Cycle Challenge on 15 November
2009 with a peloton of more than 50 inspired cyclists dressed in
Cow Suits taking on the challenge for charity.
The 2009 CHOC Cow Challenge is aiming to raise more than R1
million for CHOC (Childhood Cancer Association). To learn more
about the 2009 CHOC Cow challenge, go to www.choc.org.za
What is "CHOC"?
CHOC Childhood Cancer Foundation is a country wide voluntary
organisation. It brings together the parents of children who suffer
from all varieties of cancer or life
threatening blood disorders.
The goal of this dedicated group is to
improve the welfare and quality of care for
children with cancer. The organisation
provides direct practical help to children
with cancer, from diagnosis onwards,
recognising the inevitable disruption to
family life when a child faces vigorous and
often lengthy treatment.
Funds raised are applied to directly benefit
the children and their families, and support
those involved in the treatment of these most serious illnesses.
The name CHOC (an abbreviation of “Childrens Haematology
Oncology Clinics”) was used by the first local parent group,
established in 1979. In 2000 a new national organisation was
formed, linking parent groups in all parts of the country.
Harder than
doing something
THE VIEW FROM THE OTHER SIDE -
For everything, there is a season…
- Ecclesiastes
“Are you giving up on me?” My patient looks at me severely. “There
must be other treatment options! Aren’t there some experimental
drugs out there? I have beaten this cancer twice before. Are you
saying that I can’t beat it again?”
No one can ever know with absolute certainty whether my
patient’s newly recurrent cancer might miraculously disappear with
one more treatment. His recurrence, however, has developed very
quickly and is growing very rapidly. New cancer nodules are devel-
oping weekly. I have never seen a patient with a cancer this aggres-
sive have a meaningful, sustained response to further treatment.
The research literature confirms my impression.
It is always difficult to know what to recommend. Although “no fur-
ther treatment” is always an alternative, I routinely run through all
of the options, reviewing whatever is available, and hoping that we
land on the combination that offers that improbable, one-in-a-
thousand cure. However unlikely, we sometimes set up appoint-
ments and hope for the best.
Today, though, my sense is that it is time to focus on new goals.
The decision not to pursue more studies and more treatment can
be very, very difficult. Surgeon and journalist Atul Gawande in an
essay in The New Yorker entitled “Letting Go,” writes about how dif-
ficult it can be for physicians and patients to halt cancer treatment
as the end of life draws near. The dilemma, he concludes, “arises
from a still unresolved argument about what the function of medi-
cine really is — what, in other words, we should and should not be
paying for doctors to do.” In Gawande’s view, the profession should
equip and supply doctors and nurses “who are willing to have the
hard discussions and say what they have seen …”
In most circumstances, this moment might be the first occasion
that the patient hears a physician say clearly, “I do not think we
should continue with the cancer treatment. It is time to stop focus-
ing just on the cancer and spend more of our effort focusing on the
rest of you.”
Those are very difficult words to say. On the other hand, I cannot
begin to imagine what it must be like to hear your physician utter
them.
At some point, the topic of stopping cancer treatment must be
approached clearly and compassionately. An essay by Albert Lim,
MD, sent to me by a patient, reminds us that physicians often avoid
these difficult discussions.We push on with futile treatments and
expensive tests because “it is difficult to say ‘no’ in today’s world.”
Coupled with our own doubts, the patient and family sometimes
want us “to do something, anything, everything.”There are situa-
tions where we need to learn to think through the choices and then
choose to do nothing.
A recently published article might help me navigate these difficult
discussions in the future. Dr. Jennifer Temel and other cancer physi-
cians at Massachusetts General Hospital followed two groups of
patients who were suffering from advanced, uniformly fatal lung
cancer. One group received “standard” cancer care with chemother-
apy and aggressive treatment. The other group was offered the
“standard” care but also met very early on with the Palliative Care
team. Overall, the Palliative Care group went on to have less intense
treatment, less futile cancer treatment near the end of life, an over-
all better quality of life, and significantly less depression. They were
more likely to have talked with their relatives about their end-of-life
wishes.
Surprisingly, the Palliative Care group, despite receiving less intense
cancer treatment, also lived a bit longer! For this group of incurable
cancer patients, less aggressive care actually resulted in longer and
higher quality survival.
As the conversation wraps up, my patient reviews all of his options.
His previous therapy was difficult and he is not interested in spend-
ing any more time at the hospital than absolutely necessary. He and
his family go back and forth. Finally, they all decide against any fur-
ther cancer treatment. They will continue the conversation at home.
I am relieved. He has made what I consider to be a good choice and
appears to be at peace with the decision. The most difficult decision
he and his family have ever had to make had, in the end, been sim-
ple. The time had arrived.
Dr Bruce Campbell is a head and neck cancer surgeon (otolaryngologist) at
Froedtert & the Medical College ofWisconsin. Read his blog at
http://www.froedtert.com/HealthResources/
ReadingRoom/HealthBlogs/Reflections.htm
2010 dates to diarise
October 27 Reach for Recovery, Jhb, meeting
October 31 CHOC Fun Walk at Zoo Lake,
www.choc.org.za
13 November Cancer Support Group, Parktown
15 November 2009 CHOC Cow Challenge at the
Momentum 94.7 Cycle Challenge
27 November Bosom Buddies, 9h30 Hotel Sans Souci
December 1 Reach for Recovery, Jhb, End of Year Lunch
11 December Cancer Support Group, Parktown
8 January Cancer Support Group, Parktown
12 February Cancer Support Group, Parktown
12 March Cancer Support Group, Parktown
9 April Cancer Support Group, Parktown
CONTACT DETAILS :
People Living With Cancer Helpline 0861-ASK-NOW
www.plwc.org.za
People Living With Cancer, Johannesburg Cancer Support
Group: 073 975 1452, cansurvive@icon.co.za
Bosom Buddies: 0860 283 343, www.bosombuddies.org.za
Campaign for Cancer: www.campaign4cancer.co.za
CANSA Johannesburg Central: 011 648 2340, 19 St John Road,
Houghton, www.cansa.org.za
National Office (Bedfordview) - 011 616 7662
Reach for Recovery: Johannesburg, Antoinette 011 648 0990
or 072 849 2901
Reach for Recovery: Harare, Zimbabwe contact 707659.
Cancer Centre - Harare: 60 Livingstone Avenue, Harare
Tel: 707673 / 705522 / 707444 Fax: 732676 E-mail:
cancer@mweb.co.zw www.cancerhre.co.zw

News from
around the world
Palliative care with chemotherapy
extends survival in metastatic NSCLC
Early palliative care in metastatic non-small cell lung cancer led to
better quality of life, fewer depressive symptoms, and longer sur-
vival, compared with standard therapy, according to the findings of
a randomised, controlled trial.
Palliative care - focusing on the psychosocial and symptom needs
of the cancer patient has generally been relegated to end-of-life
care, after active treatment has been exhausted. The concept of
integrating palliative care with chemotherapy early in the disease
trajectory is a relatively new one.While theoretically attractive, this
approach has relatively little evidence base behind it. The study by
Temel et al, published in the New England Journal of Medicine,
demonstrated surprising but gratifying benefits from initiating rou-
tine and regular palliative care at diagnosis of advanced non-small-
cell lung cancer. Not only did patients achieve better quality of life,
they lived longer with early palliative care despite less overall
aggressive use of chemotherapy. These results should drive further
careful evaluation of a holistic, integrated approach to cancer care
and have implications for changing routine practice.
The authors conceded that the generalisability of their study find-
ings were limited by the fact that it was performed at a single, terti-
ary care site on patients with one specific type of cancer, and they
added that the demographically homogenous sample also limits the
applicability of these data to other populations. However, "the
results nonetheless offer great promise for alleviating distress in
patients with metastatic disease and addressing critical concerns
regarding the use of health care services at the end of life," they
wrote.
According to Dr. Ann S. Kelley and Dr. Diane E. Meier, who wrote in
an editorial that accompanied the study, the results show that pal-
liative care is appropriate and potentially beneficial when it is intro-
duced at the time of diagnosis of a serious or life-limiting illness - at
the same time as all other appropriate and beneficial medical thera-
pies are initiated.
"Unfortunately, physicians tend to perceive palliative care as the
alternative to life-prolonging or curative care - what we do when
there is nothing more that we can do - rather than as a simultane-
ously delivered adjunct to disease-focused treatment”.
http://www.oncologystat.com/news/Palliative_Care_for_Metastatic_NonSm
all_Cell_Carcinoma_Lung_Cancer_Beneficial_US.html?print_preview=yes&
Prostate cancer treatments' quality of life
effects differ long term
The 3-year results of a nonrandomized trial from Spain reveal differ-
ent patterns of adverse events after three leading treatments for
localised prostate cancer.
The trial was conducted in 11 hospitals throughout Spain, and origi-
nally enrolled 435 men with stage T1 and T2 prostate cancer who
had received no prior surgical resection or hormonal treatment. The
aim of the trial was to compare the health-related quality of life
(HRQoL) impact of the three most commonly used primary treat-
ments in men who were followed from before treatment to three
years after intervention. The analysis covered 123 men who under-
went RRP, 127 who had EBRT, and 123 who had brachytherapy.
Radical retropubic prostatectomy (RRP) was associated with signifi-
cantly more urinary incontinence and sexual dysfunction than were
external beam radiotherapy or brachytherapy, according to charts
presented at the biennial meeting of the European Society for
Therapeutic Radiation and Oncology (ESTRO 29).
Brachytherapy, however, was associated with far more irritative and
obstructive urinary symptoms than were surgery or external beam
radiotherapy (EBRT).
Dr. Guedea, a radiation oncologist at the Catalan Institute of
Oncology, L'Hospitalet de Llobregat, near Barcelona said this is a
very important study because it takes into account the previous
stage in quality of life of our patients, before they received any
treatment, He went on to say "We also have the results of three
years of follow-up. That is a very long follow-up for different types
of treatment."
Dr. Guedea observed "RRP caused considerable urinary incontinence
and sexual dysfunction. Brachytherapy and EBRT caused moderate
urinary irritative-obstructive urinary symptoms and moderate
adverse effects on sexual function, and finally, EBRT had very mod-
erate bowel-related adverse events. These results are useful to con-
sider when discussing treatment options with patients.
http://www.oncologystat.com/news/Prostate_Cancer_Treatments__Quality
_of_Life_Effects_Differ_Long_Term__US.html
Low-tech solutions
In 2009, Dr. Atul Gawande in 2007 came out with a book: The
Checklist Manifesto. It caused a stir.Yet as of the beginning of 2010,
only about 20 percent of US hospitals used surgical checklists, even
though it is proven that checklists can reduce complications follow-
ing surgery by roughly one-third.
Gawande points out that, in the US more than 150,000 patients die
each year following surgery—more than three times the number
who die annually in traffic accidents. Research consistently shows
that at least half of these deaths and major complications are
avoidable. . . “The knowledge exists,” says Gawande. “But however
Cancer Coping Kit
The multi-lingual Cancer Coping Kit to help cancer patients
cope with their journey to recovery, thanks to a grant from the
National Lottery Distribution Trust Fund (NLDTF).
The Cancer Coping Kit is available in English, Afrikaans, isiZulu
and seSotho. It provides knowledge and understanding for peo-
ple diagnosed with cancer. The kit also provides family members
and care givers with information and coping techniques.
Patients or caregivers can obtain the kit from:
Bev du Toit: 073 235 1571
People Living With Cancer: 073 975 1452
The Breast Health Foundation: 076 479 0400
CANSA: 011 648 2340
supremely specialised and trained we may have become, steps are
still missed.”
This is why the checklist is meant to be read aloud before each oper-
ation, to make sure that each member of the team agrees that they
are ready to proceed. Everyone in the room is responsible: “Did we
get the blood ready? Did we get antibiotics in? Also, does everybody
in the room know each other’s name, so we’re working as a team?”
This last question is something that Gawande and his investigators
learned from health care systems in other parts of the world.
"Just ticking boxes is not the ultimate goal here," Gawande writes.
"Embracing a culture of teamwork and discipline is.” In that sense,
the function of the checklist is as much psychological as practical.
Nevertheless, in the US, this simple, inexpensive tool has run into
what Gawande terms “cultural resistance.” Other health care sys-
tems have embraced the idea. In 2009, France went live in all 8,000
of the nation’s operating rooms, with surgeons using the checklist
to reduce harm in care.
But in the US many physicians believe that they don’t need a
checklist. It is felt that it could seem demeaning to call out the obvi-
ous things that everyone knows that they are supposed to do!
http://www.healthbeatblog.com/2010/09/the-hospital-room-of-the-
future-brought-to-you-by-ge.html
Pazopanib shows highest response of any
treatment to date for thyroid cancer
Results of a phase 2 trial show that a high number (49%) of
patients with advanced differentiated thyroid cancers responded to
treatment with pazopanib, a drug that works by stopping tumour
blood vessel growth. An estimated two-thirds of these patients are
likely to have response lasting longer than 1 year. These findings
published in The Lancet Oncology, show the highest response rate
to date of any treatment for advanced thyroid cancer.
In this study, Keith Bible from the Mayo Clinic, Rochester, USA, and
international colleagues assessed the efficacy and safety of
pazopanib, a drug that targets receptors on proteins involved in
angiogenesis including vascular endothelial growth factor (VEGF),
platelet-derived growth factor, and c-Kit.
Of the 37 patients with advanced, rapidly progressing thyroid can-
cer enrolled in the study, 18 (49%) had their tumours shrink (a par-
tial response).
Interestingly, a higher number of patients with follicular thyroid
cancer (73%) than with the more common papillary thyroid cancer
(33%) had partial responses to treatment.
Side effects were frequent but generally mild. The most common
were diarrhoea, hypertension, and raised aminotransferase concen-
trations. Treatment dose was lowered in 15 (41%) patients because
of adverse events.
http://www.ecancermedicalscience.com/news-insider
news.asp?itemId=1232
Digging deep for data on the web
The Wall Street Journal writes about a method of data collection
which patients should be aware of if they belong to online support
groups etc.:
At 1 a.m. on May 7, the website PatientsLikeMe.com noticed suspi-
cious activity on its "Mood" discussion board. There, people
exchange highly personal stories about their emotional disorders,
Cancer Support Group
November13 ◆ December 11
Meetings will be held on the second
Saturday of each month in 2011
9h00 for 9h30
at 18 Eton Road, Parktown
(opposite WDGMC main entrance)
Enquiries:
Bernice Lass, WDCMG, (011) 356 6148
Chris Olivier, PLWC/CANSA 083 640 4949
All patients and caregivers are welcome
No charge is made
ranging from bipolar disease to a desire to cut themselves.
It was a break-in. A new member of the site, using sophisticated
software, was "scraping," or copying, every single message off
PatientsLikeMe's private online forums. They managed to block and
identify the intruder: Nielsen Co., the privately held New York
media-research firm.
Nielsen monitors online "buzz" for clients, including major drug
makers, which buy data gleaned from the Web to get insight from
consumers about their products, Nielsen says.
The Wall Street Journal's examination of scraping—a trade that
involves personal information as well as many other types of
data—is part of the newspaper's investigation into the business of
tracking people's activities online and selling details about their
behaviour and personal interests.
Like many websites, PatientsLikeMe has software that detects
unusual activity and David Williams, the chief marketing officer,
quickly determined that the "member" who had triggered the alert
actually was an automated program scraping the forum. He shut
down the account. By the afternoon, PatientsLikeMe had located
three other suspect accounts and shut them down. The site's inves-
tigators traced all of the accounts to Nielsen BuzzMetrics.
Melanoma therapy shows shrinkage
A multicenter study has concluded that treatment with a new tar-
geted therapy called PLX4032 (also called RG7204) resulted in sig-
nificant tumor shrinkage in 80 percent of patients with advanced
melanoma. Investigators at Memorial Sloan-Kettering Cancer
Center and colleagues at other cancer centers have published their
findings in the August 26 edition of the New England Journal of
Medicine.
Paul Chapman, MD, senior author of the study and an attending
physician on the Melanoma and Sarcoma Service at Memorial
Sloan-Kettering, commented: “What has changed is that we learned
that half of melanomas are addicted to a mutated gene called
BRAF; this new targeted drug inhibits BRAF and shuts off these
tumors. We have seen many tumors shrink rapidly and, in some
patients, quality of life improved dramatically.”
The side effects of PLX4032 were relatively minor and included rash,
nausea, photosensitivity, fatigue, and low-grade skin tumors called
squamous cell carcinoma, keratoacanthoma type. These are removed
easily and in no case did they cause patients to come off treatment.
http://www.mskcc.org/mskcc/html/100100.cfm?Email_PageName=Septe
mber+2010+Lately%40MSKCC&Email_OID=newsletter-item-link-511669
Memory impairment common in people
with a history of cancer
People with a history of cancer have a 40 percent greater likelihood
of experiencing memory problems that interfere with daily func-
tioning, compared with those who have not had cancer, according
to results of a new, large study.
The findings, probably the first culled from a nationwide sample of
people diagnosed with different cancers, mirror findings of cancer-
related memory impairment in smaller studies of certain cancers,
such as breast and prostate cancer. Results were presented at the
Third AACR Conference on The Science of Cancer Health Disparities.
“The findings show that memory impairment in cancer patients is a
national problem that we must pay special attention to,” said Pascal
Jean-Pierre, Ph.D., M.P.H., assistant professor at the University of
Miami Miller School of Medicine, department of pediatrics, and the
Sylvester Comprehensive Cancer Center.
“The findings indicate that cancer is, therefore, a key independent
predictor of memory problems in the sample studied,” said Jean-
Pierre.
He calls the condition “cancer related cognitive dysfunction,” sug-
gesting that it goes beyond the “chemobrain” label that has been
attached primarily to women treated with chemotherapy for their
breast cancer who reported problems in cognitive function (e.g.,
attention and memory).
“These memory issues can be related to treatment, such as
chemotherapy, radiation, and hormone therapies, or to the tumor
biology itself, which could change brain chemistry and neurobehav-
ioural function,” said Jean-Pierre.
Source: American Association for Cancer Research (AACR)
Article URL: http://www.medicalnewstoday.com/articles/203279.php
Smoking during pregnancy may harm the
child’s motor control and coordination
Women who smoke during pregnancy run the risk of adversely
affecting their children’s coordination and physical control accord-
ing to a new study from Orebro University, Sweden, published in
the Journal of Epidemiology and Community Health.
Nicotine can influence development of the brain and interacts with
testosterone particularly during the foetal stage, and this could
make boys extra susceptible to foetal nicotine exposure, says Matz
Larsson, researcher in medicine and consultant physician at Orebro
University Hospital.
The results are based on a study of over 13,000 children taking part
in the National Child Development Study. The children, all born in
Great Britain in the same week in March 1958, are followed
CYCLISTS!
Join the JB Express
supporting CHOC
JB, or Justin Bessler, had only just reached his 21st birthday when
he succumbed to cancer in August this year. He was much loved
by all who knew him. When Justin’s great heart gave in before he
could realise his dream of riding in the 2011 Argus in aid of other
cancer sufferers, his friends chose to complete his dream by put-
ting together as large a group of riders as possible to ride the
Argus and donate the proceeds to the Childhood Cancer
Foundation (CHOC).
The cost per rider entering through the charity bond is R500.00,
with extra benefits, as opposed to R275.00 for a normal seed-
ed/unseeded and PPA entry. The reason for the extra cost is the
reseeding process to place all riders in the same starting group.
A website will be available shortly for buying Argus merchandise
and timing chips, so do not enter the race or buy anything at this
stage, but send us your contact details
The benefits associated with the extra entrance fee are:
We all start in the same start group
Guaranteed entry
Guaranteed to start no later than 08h45,( last riders start at
10h00 - nightmare)
Late closing date for entries
Special goody bag
Special area for registration for collection of “racepacks”
If you have already entered and wish to join us, send us your
details with the REF NO and you can pay in the difference in the
fees and start with us, you will of course enjoy the extra benefits.
Cycle shirts have been specially designed for this event and these
will cost R300.00. A T-shirt in the same material will cost R230.00
The three pockets at the back of the cycle shirts only, are
available for advertising for a donation of R5000.00 to CHOC.
Anybody interested in riding with us , helping or donating
should contact Mark Forssman at mark@forz.co.za
throughout their lives. The smoking habits of the mothers during
pregnancy were also recorded.
At the age of eleven, the children were tested by a school doctor in
terms of physical control and coordination. They were set the task
of picking up 20 matches against time - both with their left and
right hand. They had to tick up to 200 squares against time and
copy a simple figure.
Children with mothers who had smoked at least nine cigarettes a
day during pregnancy had greater difficulty completing the tests -
especially when using their non-dominant hand, which for most of
us is the left hand.
The findings suggest that women who smoke during pregnancy run
the risk of harming the child’s motor ability. There may be several
reasons behind this. The nicotine interacts with acetylcholine, which
is an important neurotransmitter and messenger when the brain is
developing during the foetal stage. But it might also be the case
that the mother’s smoking leads to a form of foetal malnutrition,
says Matz Larsson.
Article URL: http://www.medicalnewstoday.com/articles/202241.php
Stress before cancer therapy could help
deadly cells survive treatment
New research suggests that patients who experience physical or
psychological stress including rigorous exercise one or two days
before a cancer treatment might be unknowingly sabotaging their
therapy.
Stress in the body even physical stress caused by intense exercise
activates a stress-sensitive protein that can spark a series of events
that allow cancer cells to survive such treatments as chemotherapy
and radiation, according to the research.
Though the study involved a series of experiments in breast cancer
cell cultures, the researchers say the findings are a clear indication
that cancer cells have found a way to adapt and resist treatment
with the help of a stress-inducible protein - heat shock factor-1.
A series of experiments using breast cancer cells showed that a pro-
tein activated by the presence of heat shock factor-1 could block
the process that kills cancer cells even after the cells’ DNA was
damaged by radiation. The same was true when the cells were sub-
jected to a common chemotherapy drug.
The researchers hope to develop a drug that could suppress heat
shock factor-1 as a supplement to cancer therapy, but in the mean-
time, they recommend that patients avoid both psychological and
physical stress in the days leading up to a cancer treatment.
The study appears online in the journal Molecular Cancer Research.
Article URL: http://www.medicalnewstoday.com/articles/202016.php
70% of women likely to experience sexual
problems after breast cancer
A new study published in the Journal of Sexual Medicine looked at
whether women were more likely to experience sexual problems
after breast cancer. The results showed that 70% of women were
facing sexual function problems approximately two years post
diagnosis.
Mary Panjari, PhD, of the Women’s Health Program at Monash
University, reported on the sexual well-being nearly two years after
diagnosis and initial treatment of participants in the BUPA
Foundation Health and Wellbeing after Breast Cancer Study which
involves approximately 1,700 breast cancer survivors.
Many of the women who experienced sexual problems had con-
cerns about their body image after breast cancer. Also, specific
treatments for breast cancer were more likely to be associated with
menopausal symptoms, which can contribute to sexual problems.
Article URL: http://www.medicalnewstoday.com/articles/202201.php
DISCLAIMER: This newsletter is for information purposes only and
is not intended to replace the advice of a medical professional.
Please consult your doctor for personal medical advice before
taking any action that may impact on your health.
What do you want from
your oncologist?
Vision asked this question of one of our readers and got the
following reply:
The perfect man/woman? Hardly - no such thing.
Someone who will take the problem of my cancer away from me
so I have to take no responsibility for my future? No – I need to
live in the real world and learn, little by little to be strong enough
for each challenge when it is presented.
Someone who will protect me emotionally by only telling me the
good bits? No – when the bad bits can no longer be hidden, it will
undoubtedly lead to depression and with only limited ability to
cope with the problems.
Someone who is brutally honest and appears to give little or no
cognisance of how I am feeling/coping? No – honesty is essential
but there are ways and ways of explaining given situations.
So what do I want?
My experience is that at different stages I have needed different
personality types to deal with the physical and psychological
changes that occur. My second oncologist was a lovely man who
cares deeply about his patients (you will note that I don’t even
give my first oncologist a “one liner”). He tackles the problems of
cancer with a “can do” attitude and aims at curing rather than set-
tling for second best. At the time we met and worked together
against this ghastly illness, he was exactly what I needed – a
strong, father figure type of person who gave me confidence to
fight the good fight.
Why am I now on oncologist number three? Well quite simply after
a remission period of nine months, during which time I had some
wonderful experiences travelling and working abroad, three more
tumours appeared, with somewhat more sinister connotations than
the original ones. The treatment offered was very aggressive and
there was, of course, no promise of any better results than the first
time round (chemo, two lots of accelerated radiation, removal of
one kidney, followed by whole abdomen radiation).
Sadly for me, oncologist number 2 was not prepared to discuss
alternative treatments in an open minded way. I sourced other
opinions from other countries and other parts of South Africa, as is
my right. It appeared there were several less severe options which
did not offer a “cure” (is there one????) but could get me to a
stage where the illness could be managed and controlled. It is
probably a good time to point out that the most expensive drugs
used in chemo treatments are not necessarily the best in every
given situation (a bit like beauty products!) I consulted with oncol-
ogist number 3. His manner was positive without offering false
hope. His attitude was that he was talking to an intelligent person
who had every right to ask questions and partake in decisions con-
cerning treatment. He liaises extremely well with my GP for inter-
im measures when needed and always keeps me in the loop. Oh,
also he is very good looking and only appears to be about 18 years
old! What more could an old lady ask for?
We encourage readers to let us have their views on
what they expect from their Oncologist.
Email us at cansurvive@icon.co.za
First International
Kidney Cancer Patient
Conference
People Living With Cancer joined patient advocacy groups from 19
countries across 5 continents when the International Kidney Cancer
Coalition met in Frankfurt for an innovative conference, “Expanding
Circles in Kidney Cancer”, during September. Delegates from nation-
al patient support and advocacy organisations met for the first time
to exchange best practices among national groups and work togeth-
er on projects of international interest to the kidney cancer com-
munity.
Patient advocacy groups celebrated the new International Kidney
Cancer Coalition (IKCC) as an independent, democratic network
that will support existing national organisations and nurture the
development of new patient-led groups interested in this rare, but
increasingly prevalent cancer. Joined by leading kidney cancer
oncologists from the United States, India, Germany, the United
Kingdom and Canada, patient group delegates debated and pro-
posed a number of initiatives that require an international focus.
“We are thrilled with this clear endorsement of IKCC which rein-
forced the need for a collaborative international network,” said
Markus Wartenberg, Executive Director, Das Lebenshaus, a German
patient support and advocacy organization committed to improving
quality of life for patients living with kidney cancer. “Patient groups
From
Patient
to Patience
Annick von Sametzkí’s final
wish was that the book she
had spent three years writing
during her battle with
Hodgkin’s Lymphoma be pub-
lished to give other cancer
patients hope, guidance and
straightforward advice from her own experience. Her dream
became a reality when her friends raised funds and had the book,
“From Patient to Patience”, published last year.
This poignant but informative chronicle, is an invaluable guide for
those dealing with any form of cancer. Ironically, had Annick fol-
lowed the advice she gives in the book, she may have had a better
chance of survival. And this is the core message she wanted to
share with those facing cancer, her book urges them to be better
informed so that they can make the necessary life and death deci-
sions.
The book is available at a cost of R130 from www.annickvons.com
or if you have a problem, email: sametzkis@mweb.co.za
Funds raised from the sales of the book will be donated to the
“Jungle Tots Mother Touch Academy” Pre School in the impover-
ished community of Diepsloot.
Anal Canal Cancer
Support Group
Our vision is to be there in good times and bad; to provide a
warm and loving environment for women going through treat-
ment for a unique and devastating cancer; to create hope and
focus for the future.
In June 2009, a support group was formed to advise, mentor and
uplift men and women with anal canal cancer. Some of us have
had surgery to remove the rectum and anus, resulting in a perma-
nent colostomy and followed by a lengthy course of radiation.
Others have opted for the treatment route, and have undergone
chemotherapy in conjunction with extensive radiation. All have
“after effects”; all have had to adapt to a changed lifestyle.
If you have a colostomy, you’ll get helpful advice on the best
products to use and how to make them work for you; you’ll get
tips on the day-to-day difficulties of living with a colostomy and
you’ll benefit from the experience of people who have survived
the trauma and lived to tell the tale. Finally, we’ll do our best to
help you regain your self esteem and find your “new normal”.
This is a place where you can talk about anything and everything
without embarrassment; where laughter is loud and compassion
is strong.
Please get in touch with us. Contact Gail Silberman on 082
600 8901 or email: gailann@mweb.co.za
like ours have long sought an opportunity to collaborate on clinical
research priorities at the international level.”
“IKCC offers national groups the opportunity to share best practices
and to help more patients ” says Rose Woodward, Founder of the
UK Kidney Cancer Patient Support Network. “As patient-led organi-
sations, we all have to use our funds very carefully, In the UK we are
already in partnership with the James Whale Fund for Kidney
Cancer, but through the IKCC we will collaborate on many more
projects and share our resources openly with one another across
national boundaries.”
“The IKCC conference was truly unique in the world of kidney can-
cer” says Gilles Frydman, Founder of the global ACOR (Association
on Online Cancer Resources) and KIDNEY-ONC listserv with over
2,000 members worldwide”, adding “the trend towards patient-driv-
en research will demand a global focus.”
The IKCC provides an opportunity to work across borders in a cul-
turally sensitive and respectful collaboration,” says Vandana Gupta
from VCare Foundation based in Mumbai “and we look forward to
growing our patient support capabilities in India as a direct result of
this conference.”
About the International Kidney Cancer Coalition
IKCC is an independent, democratic network of patient support and
advocacy organisations established with the mission of improving
the quality of life of patients and their families living with kidney
cancer. IKCC provides information, support, and assistance to
national kidney cancer organisations. All organisations are welcome
to participate. For more information about the International Kidney
Cancer Coalition, visit www.ikcc.org
For more information or if you would like to be involved with a
Kidney Cancer Group, please contact: Chris Olivier at
cansurvive@icon.co.za
MAYO CLINIC'S LIVING WITH CANCER BLOG
Skin care important for
cancer survivors
by Sheryl M. Ness
As a cancer survivor you may be experiencing skin changes due to
current or past cancer treatments, including traditional chemother-
apy, radiation treatment or oral agents (such as biological thera-
pies).
With traditional chemotherapy, you might notice changes to the
mucous membrane (the tissues in your mouth and throat), such as
dry mouth, taste changes and difficulty swallowing. Skin discol-
oration and changes in skin texture are also common. You may also
experience hand-foot syndrome with skin blistering and peeling.
Radiation treatments can cause symptoms at the site of the treat-
ment, including dryness, itching, redness and thinning of the skin.
Normally with radiation, skin changes start after treatment begins
and may intensify during and after treatment.
With biological therapies, you may notice a rash and acne-like
changes. You may notice that these symptoms change and improve
over time.
Some practical suggestions for taking care of your skin during and
after treatment include:
• Use a moisturiser that does not include alcohol and extra perfumes.
• Drink plenty of water every day.
• When you shower and bathe, keep the water tepid and not too hot.
You can make a difference to cancer research
Donate the power of your computer when it is turned on, but is idle,
to projects that benefit humanity! The secure software and system
that does it all for free, and you become part of a community that is
helping to change the world. Once you install the software, you will
be participating in World Community Grid. It's that simple! you can
become a member at http://www.worldcommunitygrid.org.
Two of the projects where your help is needed are:
Help Conquer Cancer
Mission: The mission of Help
Conquer Cancer is to improve the
results of protein X-ray crystallog-
raphy, which helps researchers not
only annotate unknown parts of the human proteome, but impor-
tantly improves their understanding of cancer initiation, progression
and treatment.
Since the launch of HCC project in November 2007, WCG members
contributed over 46,906 years of run time, averaging over 53 years
of computation per day. To date 64,724,807 results were returned.
Help Fight Childhood Cancer
Mission: The mission of the Help Fight Childhood Cancer project is
to find drugs that can disable three particular proteins associated
• Use moisturiser after showering and before bedtime.
• Use sunscreen before going outdoors.
• Include healthy foods and oils in your diet to keep your skin
healthy from the inside out.
• Ask your doctor about any skin changes that do not improve,
have changed or are bleeding.
• If you are experiencing extreme changes, talk with your cancer
treatment team. Many times they can evaluate the need for
steroid creams or antibiotics to alleviate the symptoms.
• If you have mouth symptoms, eat soft foods and foods that are
easy to swallow, drink liquids that are nutritious and soothing,
and rinse your mouth frequently. Use a soothing lip balm to keep
lips moisturised.
Ask your health care team what to expect for your specific cancer
treatment. Knowing what to except will help you plan to manage
any side effects during initial treatment as well as those that may
last into the post-treatment period.
Sheryl Ness, R.N., O.C.N., is a nurse educator for the Cancer
Education Program at Mayo Clinic in Rochester, Minn. She helps
inform patients, families and caregivers about services and
resources to help them through the cancer journey.
She has a master's degree in nursing from Augsburg College. In
addition, she is an assistant professor of oncology at the College of
Medicine, Mayo Clinic, and is certified as a specialist in oncology
nursing. Sheryl has worked for more than 20 years at Mayo Clinic as
an educator. She has a keen interest in the importance of the quali-
ty of life and concerns of people living with cancer.
http://www.mayoclinic.com/health/living-with-cancer-
blog/MY00850.
with neuroblastoma, one of the most frequently occurring solid
tumors in children. Identifying these drugs could potentially make
the disease much more curable when combined with chemotherapy
treatment.
In the absence of World Community Grid, researchers would have to
undertake their investigation through individual docking simula-
tions, which would take approximately 8,000 years to complete.
With World Community Grid,
analysis can be carried out for
thousands of drug candidates in
parallel, allowing high through-
put screening to be conducted.
Researchers estimate this will
reduce the time required to about 2 years.
Team South Africa: ranked 215 in points out of total number of 25
376 teams registered donated - and has already donated more than
1 046 years of computing time.
The total number of members worldwide is 525 312 and they have
donated 385 933 years of computing time so far.
Just do it
Cancer information on
the Internet
J. Gordon McVie
It is the perpetual perception of having too little information which
drives cancer patients to search the Internet. This in turn creates
concerns for doctors, not only that the Internet will harm their
patients, but that it might cost more time in consultation, thus lose
them income, and, perish the thought, perhaps challenge their
authority and reputations. Many clinicians' have a biased view that
only information handed down by themselves will be helpful to
patients. This like many other such beliefs, is not evidence-based (1).
Trying to find that evidence, however, is a thankless task, as there is
not much in the conventional peer reviewed literature. What there
is suggests a total lack of negative effects of hunting cancer infor-
mation on the web (2). But is this topic appropriate for peer review
in any case? And who are the peers? Surely other patients are the
peers, and the process might be re-christened "peer view".
There is considerable evidence, particularly from the sheer numbers
of self-help web-based communities in cancer, and their durability,
that patients willingly trade "views" and cancer information, and
accurately, too (3). A recent study of 4600 consecutive postings of
information during a three month period on Breast Cancer Mailing
List showed ten errors (0.22%). Seven of these were corrected by
other readers of the website within nine hours, average of four
hours (4). Compare this to the average error rate, (mostly omis-
sions) in a weighty paper-based oncology textbook which takes
three years to compile and several hundred dollars to purchase. This
year's ASCO announced 74 new therapeutic molecules, none of
which will have been mentioned in the latest cancer tome. The end
is already in sight for paper as an information medium, according to
Bill Gates, but he would say that wouldn't he?
Though the pace is being set by the younger generation, the older
brigades who get most of the cancers are catching up! Take a look at
Web2.0 (5). The next generation of the web. This is where the web
has evolved and improved over time and now offers better and
more up to date services like blogs, wiki's and social networking
sites. This is bottom up information run by, and for consumers, be
they using book reviews, hotel star ratings or doing their banking or
shopping online. Most clinicians are not involved in the new interac-
tive, online world.. How many of us believe the Nature article which
claimed that information about science was not greatly inferior on
Wikipedia (written mostly by amateurs) compared to Encyclopedia
Brittanica? (6) The former is classic Web2.0 , while the latter is con-
servative, "doctor knows best" Web1!
Wikipedia has come from nowhere to contain over three and a half
million entries in two hundred and twenty languages in a decade.
Small wonder that it attracts cancer patients, who are instinctively
suspicious of IT contraptions such as that being instigated by
Britain's National Health Service. This is a ludicrously expensive sys-
tem which is the control freak's ultimate dream- central command
and control, designed by managers for managers (and their political
masters). Will such a system help inform the cancer patient about
their medication, its side effects and the management of the said
effects? Not a chance. If it delivers an appointment or a parking
space at the hospital, it will be amazing; if it provides email access
to the patient's physician it will be a miracle! No, the patients have
already voted with their fingers or Voice Control systems, on lap-
tops, multimedia tv sets, palm tops or cellphones. And this is not the
exclusive domain of the worried wealthy, but is increasingly possible
Biologics and breast cancer
Biologics is the target-specific treatment that may now offer
hope for people with certain cancers.
According to Dr Devan Moodley, an oncologist at Wits Donald
Gordon Medical Centre in Johannesburg, the main advantage of
biologic therapy lies in its ability to exert its effect only on the
target.
“This is not always innocuous, though, as many targets may not
only be on the tumour but also on other normal tissues, which
may lead to side effects. It is not all a bed of roses, but it’s cer-
tainly nothing like conventional chemotherapy.”
According to the Biologics Working Group (BWG), biologics are
not a first-line treatment in South Africa and strict guidelines
govern their use. However, this should not detract from the hope
they provide.
To read more about biologics and their effects, go to
http://www.health24.com/medical/Condition_centres/
777-792-801-1536,58839.asp
in developing countries, where language solutions are being found
(see Wikipedia, above), and new media options are dropping in cost.
It would have been reassuring for oncologists to have had secure
cancer information systems in place ahead of the Web explosion, or
at least a rating for trustworthy blue chip academic websites, but
the opportunity has been missed. So we have no option but to trust
our patients to find relevant information for themselves, although
meantime we could do worse than get up to date on the technolo-
gy, and point them in the right direction.
References
1. Eysenbach G. (2003). The impact of the Internet on Cancer
Outcomes. CA Cancer J Clin 53: 356-371
2. Eysenbach G. et al (2004). Health related virtual communities
and electronic support groups: systematic review of the effects of
online peer to peer interactions. BMJ 328: 1166
3. Jadad A.R. et al. (2006). Are virtual communities good for our
health? BMJ 332: 925-926
4. Esquivel A. et al. (2006). Accuracy and self correction of informa-
tion received from an internet breast cancer list: content analysis.
BMJ 332: 939-942
5. Deshpande et al. (2006). Web 2.0: Could it help move the health
system into the 21st century? JmhG 3 no. 4: 332-336
6. Giles J. (2005). Internet encyclopaedias go head to head. Nature
900-901
http://www.ecancermedicalscience.com/comment-editors-
views.asp?doi=10.3332/ecancer/editorial3
ecancermedicalscience is an open access cancer journal from the
European Institute of Oncology.
CONTRIBUTIONS FOR PUBLICATION IN VISION
Articles and letters submitted for publication in VISION
are welcomed and should be sent to:
cansurvive@icon.co.za