Newsletter of Cipla Palliative Care and Training Centre

carebeyondcureMarch 2012www.carebeyondcure.org

Head and neck cancer

Tops prevalence; gnaws minds most

HEN 36-year old Harish was admitted to Cipla Centre, he was Wdetermined to keep his young wife

and 3-year old son away. He did not want them to see the big oozing opening on his cheek that exposed his tongue. Care continued through re-admissions and home care sessions, interspersed with several counseling sessions. Slowly, Harish and his wife came to terms with reality. Harish felt reassured when his wife told him she had concrete plans to take care of the family in his absence. His son enjoyed the time the three of them spent together on the swing in the garden.

Says Dr Pradeep Kulkarni of Cipla Centre, “Psychosocial care is most important in head and neck cancer. The disfigurement caused by large wounds on the face, the presence of maggots and the smell—it can all be deeply scarring. Not just for the patient but also for the immediate family. After we manage the wound and the pain, restoring the patient's self-esteem and repairing the strained family bonds call for extra skill and perseverance.”

There is guilt fanned by the belated realization that they should have given up tobacco (the most common villain) when they had the chance. Frequently, this guilt manifests as aversion to meeting their dependents. There is a lot of anger directed at the patient and, in some cases, unfairly, even at the spouse for failing to keep the partner's addiction under check.

“Young men get introduced to tobacco at a very young age,” Dr Kulkarni observes. “They go on to get married and start a family. Symptoms are ignored. They believe they can

overcome everything except the addiction. By the time they realize the truth, it is usually too late.”

Mending wounds; restoring respect

In head and neck cancer, the patient may lose the ability to communicate for physical or psychological reasons. In some cases, the organ or muscles required for speech may have been surgically removed. The presence of an ulcer or a scar can affect confidence and the patient prefers to remain aloof and silent. Some problems can be corrected through speech therapy. In several cases at Cipla Centre, diversional therapies including art and music have been found to have a positive effect.

Following surgery or on account of the growing mass, some patients may experience difficulty in swallowing. Tongue mobility may be restricted. Spasm of the jaw can make it difficult to chew and swallow. It may be necessary to provide an artificial opening into the stomach through gastrostomy or, more commonly, feed the patient using Ryle's tube.

Patients of head and neck cancer can experience pain radiating to the head

The disfigurement caused by large wounds on the face, the presence of maggots and the

smell can all be deeply scarring. Not just for the patient but also for the

immediate family. After we manage the wound and the pain, restoring the patient's

self-esteem and repairing the strained family bonds call for extra skill and perseverance.

Cont'd on Page 5

Dealing with maggot infestation

UNGATING and necrotic wounds are common among cancer patients in FIndia because many patients have

advanced neglected tumours. Decomposing tissue attracts flies, which find the tropical climate conducive to their prolific breeding. Poverty, poor sanitation and lack of aseptic wound care exacerbate the problem.

Myiasis (myia means fly in Greek) is an infestation of the skin by developing larvae of a variety of fly species.

These larvae (commonly referred to as maggots) feed on living or dead host tissues. Maggots may infest different parts of the body giving rise to cutaneous, urogenital, ophthalmic, nasopharyngeal or intestinal myiasis. Infestation of existing wounds is referred to as traumatic myiasis.

In the obligate form of myiasis, maggots feed on living tissues. Such parasites include screwworms such as Chrysoma bezzania. These invade healthy tissues in the nose, mouth, eyes and vagina causing pain and disfigurement. Surgery may be required to remove deeply embedded larvae.

In facultative myiasis, the larvae develop in necrotic wounds. Such traumatic myiasis is caused by different species. The most common flies infesting wounds are green bottles (Lucilia sericata and Lucilia cuprina). Larvae of the common housefly, Musca domestica, have also been identified, especially in neglected wounds.

Most in head and neck

Patients of head and neck cancers are most vulnerable to maggot infestation. Face and neck are often left uncovered. For many poor patients, preventive measures such as proper disposal of garbage and installing screens on windows to keep flies out are not feasible.

A moist soiled dressing is no protection against flies. Care must be taken to keep the wound covered and dry, and to burn or bury soiled dressings. Topical metronidazole can be used to help reduce wound odour.

Patients may experience a biting, gnawing, throbbing or wriggling sensation. The number of maggots removed provides an

indication of the extent of infestation.

The sight of maggots often frightens and embarrasses the patient. Caregivers and family members may find the sight repulsive. In a palliative care setting, it is very important to provide counselling so that the emotional distress does not

compromise the quality of care.

Removing maggots

Twenty minutes before removal, the patient is given oral analgesic. The wound is washed with normal saline and hydrogen peroxide and esthetized with lidocaine spray. Acriflavin or turpentine is applied to cause irritation, which induces the maggots to emerge from the wound. Ether and chloroform are also effective, but more expensive. Emerging maggots are removed using forceps. Then the wound is dressed with an antibiotic preparation.

It is important to continue applying turpentine and acriflavin packs for 3 to 4 days after the last maggot has come out so that no late-emerging larvae remain in the wound.

A moist soiled dressing is no

protection against flies. Care

must be taken to keep the

wound covered and dry, and to

burn or bury soiled dressings.

It is important to keep the wound covered, clean and dry. Warm and moist areas attract flies and encourage maggots to thrive.

The wound must be cleaned every day. Wounds tend to ooze. Therefore, the dressing should be changed as often as necessary to keep the area dry.

Those who have had maggots removed from the wound must continue cleansing the area as advised by the doctor. This will help to eliminate the maggots, which may be growing deep inside the wound, out of sight.

Care at home

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Caring for those who give careCCORDING to a Yiddish proverb, “God gave burdens; he also gave Ashoulders”. When God gives a

member of a family a serious disease, it falls upon another to be the shoulder to carry both the patient and the rest of the family.

Cipla Centre conducted a Family Caregiver Training programme on January 28 to encourage and empower individuals who are caring for a family member with a chronic illness or disability. This is slated to be the first of a series of such training programmes dealing with various aspects of caregiving.

Advances in modern medicine have made it possible for people to lead a long life even with a chronic condition. Dr Priya Kulkarni pointed out that this has made the role of caregiving more important than ever before. She s t r e s s e d t h a t i t w a s important for the caregivers to take care of their own emotional and physical wellbeing. Every stage of caregiving poses its own challenges and it is important for the caregiver to be aware of and be prepared to face this, she added.

Talking about the importance of “knowing oneself”, Nandini Thatte said that awareness about one's own strengths and weaknesses made a big difference in dealing with various caregiving situations. “Acknowledging and dealing with strong emotions like anger and guilt is important for the patient and the caregiver to manage stress,” she observed.

Dr Suchita Raj dealt with the important issues of anxiety

and depression. She warned caregivers against illogically assuming responsibility for the patient's wellbeing, refusing to seek and accept support, and for harbouring irrational concerns about “what others think”.

Dr Pradeep Kulkarni outlined issues in caring for children and the elderly. He explained how caregivers could handle various situations like falls and convulsions.

The programme included activities to help participants know themselves better. They w e r e a l s o v i d e o s a n d p r a c t i c a l demonstrations in making a bed with

minimum inconvenience to the patient on it, making a semi-reclining bed using old newspapers and pillows, and on moving a patient from wheelchair to a chair.

The 16 participants in the p r o g r a m m e i n c l u d e d caregivers, nurses and medical social workers. As s u g g e s t e d b y s o m e participants, Cipla Centre is trying to conduct similar workshops in hospitals.

Participants engrossed in an activity that gave insights into what we value and the roles we play.

Painter of hearts

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How to raise an ordinary bed easily and securely, using old newspapers and pillows, so that the patient can sit up comfortably

I would like to know m o r e a b o u t

medications for pain relief at home, how to provide as therapy at home and also how to regulate diet

The workshop has really helped me. I need to think differently as I am a patient and also my own caretaker. (I would like a) special workshop for renal failure patients (who have) a totally different requirement.

Hemant Gupta

Nirmala Savadekar

ARAYAN NAIK, aged 40 at the time of first admission, was a Ns i m p l e w a t c h m a n f r o m

Narayangaon, Junnar. We had the opportunity to serve him for long through several re-admissions and also at home.

He had cancer of the tongue and could

not talk. But he used a notebook to keep conversations going. One day he showed us something he had painted. It appeared to have several hearts. What was it all about?

“If I had so many hearts, I would give one to each of you.”

Head and neck squamous cell carcinomas

EAD and neck cancers collectively

describe cancers originating in the Hupper aerodigestive tract (UADT),

including the oral cavity, larynx, pharynx and

nasopharynx. Most of these cancers affect the

squamous cells which line the moist mucosal

surfaces inside the mouth, nose and throat. This

is why head and neck cancers are medically

termed as head and neck squamous cell

carcinomas (HNSCC).

Each year, HNSCC affect more than 5,50,000

people and cause 3,00,000 deaths. Incidence

rates are more than twice as high in men as in

women. In India, HNSCC account for up to 70

percent of all cancers detected. Oral cavity

cancer is the most common type of head and

neck cancer.

Causes

Statistics indicate that 44 percent of cancers in

men and 20 percent cancers in women are due to

the use of tobacco in one form or the other.

According to news reports, of the 3000 head and

neck cancers seen by Kidwai Memorial Institute

of Oncology, Bengaluru, in a year, 90 percent are

tobacco-related.

Too much alcohol can cause HNSCC. Heavy

drinkers who are also heavy smokers are 35

times more likely to develop oral cancer than

those who do not drink or smoke.

Human papilloma virus (HPV) can cause cancer

of the tonsils and the base of the tongue. Ebstein-

Barr virus can be responsible for cancer of

salivary glands while cytomegalo virus can cause

cancer of nasopharynx and Burkitt's lymphoma.

Repetitive injury caused by loose-fitting dentures

and poor oral hygiene can lead to cancer of the

oral cavity.

Exposure to industrial pollutants like nickel dust

and formaldehyde can cause nasopharyngeal

carcinomas.

Diagnosis

Early diagnosis is vital as patients who present

with early-stage disease have significantly better

outcomes. Routine physical examination,

If the symptoms of head and

neck cancer persist for more

than two weeks, it is important

to consult a doctor. It is not a

good idea to ignore the

symptom if there is no pain.

Very often, pain is not an early

symptom.

WARNING SIGNS

A number of warning signs may indicate cancer in the mouth, nose and throat. While many of these symptoms may also be caused by less serious problems, if these persist for more than two weeks, it is important to consult a doctor. It is not a good idea to ignore it if there is no pain. Very often, pain is not an early symptom.

Symptoms

White or red patch, ulcer that does not heal, unusual bleeding, pain, difficulty in opening mouth, swelling on neck.

Blocked nose, bleeding through nose, frequent headaches, difficulty in swallowing, swelling on face.

Difficulty in swallowing, breathing problem, persistent sore throat, swelling in neck.

Change of voice, difficulty in swallowing, whistling sound during breathing.

Swelling on face, bleeding through nose, tooth ache in upper jaw, change or deterioration in vision.

Swelling below jaw or in front of ear, difficulty in opening of mouth, facial palsy.

Affected area

Oral cavity Lips, tongue, floor of mouth

NasopharynxNasal cavity, passage into pharynx

Pharyngeal Passage from nasal cavity to pharynx

LarynxThe “voice box”

Paranasal sinusesAir spaces bordered by facial bones

Salivary glands

Recent research findings

Slight increases in temperature of the oral m u c u s m e m b r a n e s e a r l y i n chemoradiotherapy is a predictor of severe mucositis later in treatment, according to a study by Dr Ezra Cohen and others, University of Chicago. This knowledge could allow for early intervention and potential modifications in therapy.

Another study by Dr Chapla Agarwal and team from University of Colorado has shown grape seed extract to hold

promise in selectively inhibiting the growth of human HNSCC cancer cells.

Doctors at University of California have found that curcumin, the main component in turmeric, appeared to block an enzyme that promotes the growth of head and neck cancer.

A team at Technion—Israel Institute of Technology has developed an electronic nose that can sniff out head and neck cancer tumours which are difficult to diagnose. The device picks upon microscopic chemical changes emitted by affected people.

A new study by Rice University and the University of Texas MD Anderson Cancer Center, uses carbon nanoparticles to encapsulate chemotherapeutic drugs, which remain covered till they reach the targeted cancer cell. This shows promise in reducing the quantity of drug required to achieve the desired result, while cutting down toxicity.

Tops prevalence; gnaws minds most measuring up to 7.5 on a scale of 10. Judicious use of analgesics according to the WHO analgesic ladder can help to keep patient pain-free.

Regular dressings along with a short course of antibiotics can keep wounds healthy and odour-free. This will discourage growth of maggots.

Other problems that these patients may face include dry mouth as a side effect of radiation or because of infection of the salivary glands. Loss of salivary secretions can cause oral candidiasis, which requires special care.

“Nutrition is very important as we would like the patient to regain as much strength as possible,” says Dr Kulkarni. “Once the pain is under control we encourage the patient to move around. If there is any disfigurement, we give the patient time to come to terms with the new appearance. Support from others, including family members, is of great help in this, but they too may need counselling. Just getting the patient and the family to talk about their worries and fears puts them in a positive frame of mind.”

Nirmal, who now leads a near-normal life at home, is one example of a positive outcome. Like

Cont’d from page 1

Harish, Nirmal too had a deep facial wound but his distress was mainly on account of the maggots. Gently, patiently, the nurse at Cipla Centre took the maggots out, all 117 of them! Happy to be rid of his unwelcome tenants, the patient and his wife closely watched the doctors and nurses in action and faithfully stuck to the regimen. They went back home in just 15 days. Nirmal is now proud to show his face to the camera. There is no sign of the wound at all!

including a thorough oral examination, is the

best way to detect HNSCC even before symptoms

develop.

lMedical history including lifestyle of the patient (especially tobacco and alcohol consumption) can provide important pointers.

lDuring clinical examination for presence of any swelling or non-healing ulcer in neck or aerodigestive tract, doctors also look for precancerous conditions like erythroplakia (red spots or patches) and leukoplakia (white spots or patches).

lMRI or CT scan can give an idea about the extent of growth and help decide on surgical intervention.

lAdvances in endoscopy have made visualization and collection of biopsy samples from the lesion easier.

lFine needle aspiration cytology (FNAC) is useful in diagnosing metastatic squamous cell cancers of unknown origin.

Treatment

Currently, the main treatment options for head and neck cancers are surgery, radiotherapy and chemotherapy. The type of treatment will depend on the site, the disease stage and the patient's overall health status.

Just getting the patient and

the family to talk about their

worries and fears puts them in

a positive frame of mind.

Palliative care in HIV/AIDS

harat i Vidyapeeth Deemed Universi ty Medical Col lege B(BVDUMC), Pune, organised a

symposium on HIV/AIDS on January 5.

Speaking at the event, Dr Priyadarshini Kulkarni, Medical Director, Cipla Centre, pointed out that institution of palliative care along with aggressive therapy will help the patient maintain a near-normal quality of life and also offer support to the family.

A doctor practices

“narrative medicine”

when he listens to a

patient's story. Listen

with your eyes to

communicate well.

- Dr Robert Twycross, leading authority on

palliative care, speaking

at IAPCON 2012.

E were nominated by Cipla Centre to attend the 19th International WConference of Indian Association of

Palliative Care from February 10 to 12 at Kolkata. We also participated in the pre-conference CME on February 9.

For us it was a great occasion to learn from many national and international experts. We had the opportunity to exchange notes with several participants about the practices we follow and the challenges we face. We were proud to realize that at Cipla Centre we provide care that is on par with the best such centres in the world.

Not that it gave us any reason to feel complacent. Because we also realized that in our efforts to provide maximum care to a steadily increasing number of patients and their families, while keeping up with the evolution of palliative medicine, we have not done justice to two critical areas: research and education. On our return, when we shared this concern with the rest of the team, we were glad to learn that these two will be our focus areas beginning this year.

An occasion to learn, share, be proud

IAPCON 2012

Dr Geeta Jahagirdar and Sister Bindu Pappachan

Another highlight of the conference was the selection of Dr Priyadarshini Kulkarni, our Medical Director, as a member of the Central Council of the Indian Association of Palliative Care, representing the western region. She said that research and education would be the focus areas for IAPC, too.

6

programme on “Essentials of Palliative Care” was organized by The AGujarat Cancer & Research Institute

(GCRI), Ahmedabad on February 26. The primary objective of this educational event was to establish networking with cancer centres in Gujarat and to create awareness about palliative care.

Inaugurating the meet, Dr Shilin Shukla, Hon Director, GCRI described the palliative care and hospice services provided by GCRI.

I had the opportunity to speak about the i m p o r t a n c e o f i n t e g r a t i n g palliative care with m a i n s t r e a m curative treatment right from the time of diagnosis of chronic disease. It was heartening to n o t e t h a t t h e participants were s e i z e d o f t h e

GCRI organizes educational event on palliative careDr Priyadarshini Kulkarni

importance of communication skills, an essential component of modern medicine at every stage of disease.

The highlight of the event was an interactive panel discussion on communications. It c o v e r e d i m p o r t a n t i s s u e s l i k e communicating the diagnosis and the advanced stage of disease, and dealing with emotional and psychosocial issues.

The event was supported by Cipla Ltd.

ASCO urges early integration of palliative care in metastatic cancers

HIS is the provisional clinical opinion of American Society of Clinical TOncology (ASCO):

“Based on strong evidence from a phase III RCT [randomized controlled trial], patients with metastatic nonsmall-cell lung cancer (NSCLC) should be offered concurrent PC [palliative care] and standard oncologic care at initial diagnosis.

“Although a survival benefit from early involvement of PC has not yet been demonstrated in other oncology settings, substantial evidence demonstrates that PC when combined with standard cancer care or as the main focus of care leads to better patient and caregiver outcomes. These include improvement in symptoms, QOL [quality of life], and patient satisfaction, with reduced caregiver burden.

“Earlier involvement of PC also leads to more appropriate referral to and use of hospice, and reduced use of futile intensive care. While evidence that would clarify optimal delivery of PC to improve patient outcomes is evolving, no trials to date have demonstrated harm to patients and caregivers, or excessive costs, from early involvement of PC.

“Therefore, it is the consensus of the expert panel that combined standard oncology care and PC should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden. Strategies to optimize concurrent PC and standard oncology care, with evaluation of its impact on important patient and caregiver outcomes (e.g., QOL, survival, health care services utilization, and costs) and society should be an area of intense research.”

Substantial evidence

demonstrates that

palliative care when

combined with

standard cancer care

or as the main focus

of care leads to better

patient and caregiver

outcomes.

7

end-of-life care options, rather late in the Smoking patients have worse course of their disease. This conversation symptomsusually happens under stressful conditions,

Cancer patients who smoke are likely to when the patient is hospitalised for acute care. experience higher levels of physical And, more often than not, the doctor at the Nanoparticles for targeted deliverysymptoms like pain, fatigue, poor appetite and other end is a hospital physician and not the insomnia. They are also likely to have more New research by Rice University and the oncologist who may have treated the patient intense psychological symptoms like University of Texas MD Anderson Cancer for long. The researchers feel that this delay depression and anxiety. The study involved Center has used carbon nanoparticles to deprives the patient and the family the 486 cancer patients with a mean age of 55 encapsulate chemotherapeutic drugs and opportunity to think things over at leisure. The years and was conducted by Dr Diane Novy “shield” them until they are delivered to the study involved 2,155 patients with stage IV and her team at the Pain Management Center head and neck cancer cells they are meant to cancer. While 73 percent had this talk, the at the University of Texas MD Anderson kill. The study by James Tour and Dr Jeffrey median time of the discussion was just 33 days Cancer Center in Houston, Texas. The study Myers combined paclitaxel and cetuximab before death.also suggested that smokers were at greater w i t h h y d r o p h i l i c c a r b o n c l u s t e r s

Annals of Internal Medicine risk of opioid misuse. functionalised with polyethylene glycol.

Cetuximab, a humanised monoclonal Medscape Medical News Biomarker predicts malignancy of antibody, binds exclusively to the epidermal

head and neck tumourgrowth factor receptor, a receptor over-Imatinib stops morphine toleranceexpressed by 90 percent of head and neck The University Hospital for Einstein has

Anticancer drug imatinib can prevent or squamous cell cancers. As paclitaxel does not found a biomarker in head and neck cancers

reverse tolerance to morphine analgesia, a mix with water, it is generally mixed with a that can predict if a tumour will be life-

research team led by Dr Howard Gutstein of cas tor o i l -based car r ie r de l ivered threatening, immediately after diagnosis. This

University of Texas MD Anderson Cancer intravenously. The new compound developed can guide how aggressively a tumour should

Center. This action was associated with by the researchers is water-soluble and avoids be treated. Certain microRNAs are

blocking of PDGF-â activation by the drug the toxic effects of paclitaxel and the carrier abnormally expressed in head and neck

and release of PDGF subunit B. Given the on healthy cells. cancers and every other malignant cell type.

widespread use of PDGF- â inhibitors, the MiR-375 proved to be a highly useful ACS Nanoresearchers hope that the clinical translation biomarker. Those patients with extreme

of their findings on rats could reduce the End-of-life care talk happens too differences between normal- and tumour-suffering of individuals in severe pain. They

tissue levels were 13 times more likely to die latepostulate two mechanisms at play: a rapid or 9 times more likely to experience

effect causing most of the reversal and a A study by Dana-Farber Cancer Institute led metastasis. slower process that completely restores by Dr Jennifer Mack has found that a vast

American Journal of Pathologyanalgesia. majority of patients with incurable lung or colorectal cancer talk to their physician about Nature Medicine

ROUND-UPROUND-UP

SMILE IT AWAY

HOULD those suffering from chronic disease like cancer be abandoned to Spain, suffering, isolation, anxiety and

depression? Or is it our responsibility to provide remedies to grant them peace and a better quality of life in the company of loved ones? This was the moot question raised in the international documentary, “LIFE Before Death”, premiered in Pune by Cipla Palliative Care and Training Centre, in association with Aashay Film Club, on February 5, at the National Film Archive of India.

More than 150 people attended the screening, which was held on the occasion of World Cancer Day, observed the preceding day.

Drawing on real-life experiences and opinions of experts from 11 countries including India, the film contrasted the immense, avoidable suffering of millions with

Just because the patient is still alive six months after we expected him to die, you cannot write Alive Against Medical Advice

the almost miraculous results of good care, hard work and perseverance.

Cine personality Kimi Katkar, who introduced the film, remarked that the film was “not about death, but about life without pain, something that is everyone's right.”

Made by filmmakers Mike Hill and Sue Collins and narrated by acclaimed British actor David Suchet, “LIFE Before Death” has received four international film awards.

Dr Priyadarshini Kulkarni, Medical Director, Cipla Palliative Care Centre pointed out that “anyone who is affected by or is caring for someone with a life-threatening disease like cancer would have been able to identify with the film.” After the screening, she answered questions regarding palliative care, and usage and availability of morphine. She also outlined the services provided by Cipla Centre.

Cipla Centre premieres film on global battle against pain

URENDRA Pandit, 24, had blood cancer. He passed XII standard in S2009, scoring 70 percent in

commerce, without the benefit of any tuition class. As the eldest son of poor parents with four siblings to feed, he could

not afford to. He turned a casual labourer when he was barely into his teens. He was 14 when he started selling various things on a cart, roaming the streets for long hours. On an average he made about Rs 50 a day and most of it would go towards t reat ing h is youngest brother, who had a heart condition.

It was night when he was brought to Cipla Centre. He was a little worried. He could not see anyone who looked like a nurse or a doctor. Would he get any care here? His doubts were dispelled by morning.

“I feel free. It is so nice to be enjoying the open air. The ward in the hospital was very suffocating,” he was in a mood to talk as he enjoyed being out in the sun-drenched garden.

“Here, in this Centre, in these couple of days, my mother and I have learnt to be positive. Whatever has to happen will happen. That is not in my hands. But I want to stay positive. I am thinking of studying more. I love to study. I can do it.”

New admissions

Re-admissions

OPD

Home visits

Physiotherapy

Diversional therapysessions

169

83

54

451

46

87

I want to study

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FACT FILEJanuary to March 2012

No. of patients

since inception

7748(till

31st March 2012)