Friends of Max Leadership Summit 2015, Hyderabad

The second Friends of Max Leadership Summit was held on 18-19 April 2015 in Hyderabad.

The venue, Aalankrita Resorts, was the perfect setting for the Summit— the splendid gardens, the stunning grandeur and intricate Rajasthani décor captivated the guests in royal mystique from the moment they entered the premises.

Some 150 FOM City Chapter Leaders from all across India attended this exclusive leadership summit. Participants started arriving from wee hours of the morning—some old and some first-timers—all were received with a warm welcome. By 11am the registration desks were buzzing with activity. Eminent guests, Dr Suresh Advani , renowned medical oncologist from Mumbai and one of the members of the Advisory Board of FOM and Pat Garcia-Gonzalez CEO of Max from Seattle also were some of the first to arrive. They were seen to be interacting with members with keen interest.

The Max India Senior team led by Viji Venkatesh had already checked in two days earlier, in order to begin working on the preparations and on the morning of the 18th the complete India team was there to volunteer at the event. The theme for Leadership Summit 2015, very aptly being “Together We Can, Together We Will” – this was a perfect showcasing of how Max works with its patient support group arm, FOM.

DAY – 1 :18 April 2015 (Saturday)

• National Anthem
• Invocation and Lighting of the lamp by Doctors
• Welcome dance performance
• Welcome Address: Dr Raghu Krishnaswamy, City Chapter leader, FOM Hyderabad
• Guest of Honour’s Address: Pat Garcia-Gonzalez, President and CEO, The Max Foundation
• FOM Trustee Report: S V Sunder Krishnan, Treasurer and Trustee FOM

SESSION – 1

This session consisted of a series of Medical Presentations and Q & A session, on CML & GIST by our esteemed Panel of Doctors. Listed below are a few take away points from each topic:

OVERVIEW

Dr. Suresh Advani, Director, Medical Oncology, Jaslok Hospital, Mumbai

1. A general overview of what is CML, the genetic changes- translocation of chromosomes (9,22) and the formation of the abnormal gene BCR-ABL, the Philadelphia chromosome.
2. Symptoms at Diagnosis – irregular blood counts, enlarged spleen
3. Stages of CML- Chronic, Accelerated, Blast phase and Blast Crisis
4. Evolution of CML Treatment – Hydroxyurea, Interferon, SCT/BMT and now TKIs – Imatinib, Nilotinib, Dasatinib.
5. Goals of Therapy- CHR, CCyR, MMR and CMR.

LONG TERM SIDE-EFFECTS OF TKIs

Dr. Raghunath Rao, Director, HomiBhabha Cancer Hospital, Vishakapatnam

1. Side-effects can be categorized into mild to moderate, mostly manageable and potentially reversible over time.
2. Most common side effects – fatigue, muscle pain, fluid retention, weight gain, diarrhoea
3. Mostly experienced in first 2 years of treatment
4. Variation in side-effects profile of CML and GIST patients
5. Risk factors such as age, diabetes, hypertension etc. maybe associated with increased toxicity- such as cardio toxicity, liver toxicity, neutropenia, etc.
6. Potential detrimental effect of Imatinib on the outcomes of pregnancy.
7. Advocate a fine balance of the risks to both the mother and the foetus versus the potential for a loss of response on discontinuing IM

QUALITY OF LIFE ISSUES

Dr. Tapan Saikia, Head, Medical Oncology, Prince Aly Khan Hospital, Mumbai

1. Although much less toxic than the treatments they replaced, TKIs such as Imatinib, Nilotinib or Dasatinib, do cause symptoms that adversely affect a patient’s quality of life.
2. Need to develop interventions that can address quality of life for patients because most will take TKIs for the rest of their lives.
3. Increasingly important to maximize quality of life and minimize side effects, particularly serious and irreversible toxicity.
4. Prolonged survival increases the need for Trials for patients to go off treatment with appropriate monitoring – Many participants agreed unanimously for such trials.

NON-ADHERENCE AND ITS IMPACT

Dr. Prasanth Ganesan, Associate Porfessor, Cancer Institute, Chennai

1. Adherence scores evaluated thru ‘Adherence Surveys’ and various other methods, found that at least 55% of patients were classified as non-adherent – missed a dose or more during any given month
2. Sokal or Hasford Risk Score or the EUTOS Score may be calculated at diagnosis to identify high risk patients
3. Reasons of Non-Adherence – Side-effects, lack of information, forgetting to take medication, achieved MMR, and sometimes young age and Cost factor also
4. Response to treatment ‘can be impacted’ overtime by missing even 1 dose
5. Patient adherence to therapy is essential to successful treatment.
6. Tools for adherence – reminders from family/ friends, pill dispensers, electronic reminders
7. Adherence can be optimized by counselling, educating patients, support, monitoring and side-effects management.

MONITORING AND MANAGEMENT

Dr SenthilRajappa, Indo-American Cancer Hospital, Hyderabad

1. Importance of Bone marrow biopsy at diagnosis for determining the stage of CML
2. Molecular monitoring using PCR test recommended at 3-month intervals initially and at 3- to 6-month intervals in patients with CCyR or MMR.
3. Variations in PCR values and log-reductions across various labs, as every lab uses slightly different procedures, equipment, and standards, which can affect PCR final results.  So PCR numbers from different labs cannot be directly compared.
4. The PCR International Scale supposed to reduce PCR confusion by standardizing PCR results around standard log reduction levels.
5. No need to panic over minor variations in PCR values within log
6. Increase in PCR value by 1-log or more – need to follow-up after 1-3 months and observe the trend, before initiating therapeutic changes
7. Regular follow-up, testing and compliance imperative for successful treatment

NEW TREATMENT OPTIONS and STOP TREATMENT

Dr Pankaj Malhotra, PGI, Chandigarh

1. Second-line therapies for imatinib-resistant CML, approved by FDA – Nilotinib, Dasatinib, Bosutinib, Ponatinib, Radotinib, Omaxetaxine, etc
2. One key mutation – T215I – which is resistant to many TKIs is being successfully overcome by Ponatinib
3. Several CML vaccines are also being studied to use against CML
4. Even though PCR shows 4-log reduction or undetectable, medication to be continued lifelong, as leukaemia cells still exist in body – must remain on treatment to prevent recurrence.
5. Study shows 10-15% of patients can go off Treatment, within a framework of tightly controlled clinical trials.
6. Patients with – low disease burden at diagnosis, adherent, early molecular response, with persistent 4.5 log reduction for 2 years, PCR undetectable, with NO Mutations – are the candidates who can participate in STOP Treatment trials.
7. Study shows one-third of patients relapsed within 6-months after stopping therapy, but could then return safely and respond to treatment.
8. No way to predict which patient may stop treatment without relapse.

The Medical session concluded with a discussion on the possibility of creating an exclusive set of treatment guidelines for treating CML and GIST specific to the Indian sub-continent, in-lieu of the existing NCCN or ELN guidelines.

The TEA BREAK provided a much needed relief from all the thought-provoking discussions. An opportunity for chit-chat :-).

SESSION – 2

‘CHAI FOR CANCER’ – Viji Venkatesh, Country Head India, TMF

This session was initiated by Viji Venkatesh showcasing the success of the fundraiser “Chai for Cancer”. Funds are very much essential for patient support, education material, conducting support group meetings and such. She recounted how over the years fundraising was a major challenge with very few sources. And then…..this small but unique and one of its kind idea, to raise funds by organizing ‘Chai for Cancer’ addas (get-togethers) caught on the imagination of everyone and it was an instant hit. Wherein, individuals need not make huge contributions, instead they could donate whatever they wished, minimum being Rs.100 for a ‘Cup of Chai’. As the saying goes: “Every drop makes an Ocean”. This concept was a huge success with people and organizations coming forward to raise funds by setting up Chai ka Addas at homes, offices, public parks and other places. In this way the dual goals of raising funds and spreading cancer awareness in the community were achieved. Few City Chapter leaders who had successfully raised significant sums of funds were felicitated by our special guest – Pat Garcia-Gonzalez.

SESSION – 3

City Chapters came forward to showcase their City Chapter’s Achievements and unique Accomplishments:

CHENNAI: On being recognized by the leading Cancer Institute in the region and becoming its partner in all Support Group activities – Sriram Ranganathan and Nagendran Nagarajan.

PUNE: On becoming a full-fledged City Chapter, successfully learning from the Mentor Group (Mumbai) and forging ahead – Amrita Patidar and Nikhil Batra.

DELHI/ KOLKATA: On seeking and obtaining partnership with hospitals for a Fundraiser – Anil Nagpal and Neel Kankani

PATNA: Successfully hosting Patient Group Meetings annually – 8 years in a row! – Prashant Kumar

INDORE/ RANCHI: Bringing together people for the first time and making a difference – Manoj Patidar

ENTERTAINMENT AND DINNER

After a short break, participants assembled in the lawns of the resort for a night of entertainment:

• Folk dances by the Banjara dance group

• Bhai and Bidu show – showcasing some important events/ milestones in the lives of City Chapter leaders

• Songs by Mujeeb, Viji and Bindu Menon

• Dance performance by a bunch of graduate students on a medley of both Bollywood and Tollywood songs – our very own FOM members joining in adding that extra ‘tadka’ to the festive mood.

The night ended with everyone gathering for dinner – interacting, chatting, singing – all in all a fun night.

DAY -2 : 19 April 2015 (Sunday)

Art of Living and ‘CHAI FOR CANCER’ Curtain Raiser

Morning 7am and the day started with a 90 minute Art of Living session conducted by Rishi Ajatshatru, FOM leader from Ranchi. The humour and the liveliness with which he conducted the session was exemplary.

This early morning workout built up an appetite for everyone and it was time for a sumptuous meal. The breakfast area was fantastically surrounded by lush greenery and the breakfast spread itself was lavish to say the least.

A short distance away, the much awaited ‘Chai for Cancer’ curtain-raiser was underway simultaneously in the garden nearby. Stalls were set-up for selling ‘Chai for Cancer’ merchandise and of course the Tea stalls. Mr Ranjit Shahani, Pat, Viji, the Max India team, Trustees, Volunteers, everybody joined in for the inaugural event. It was a visual to treat to see everybody in their purple tees sipping their ‘Chai’, making donations and clicking pictures with all and sundry.

SESSION – 4

Chief Guest’s Address: Mr Ranjit Shahani, Country President, Novartis India

Mr Ranjit Shahani spoke about the formation of Novartis (global merger of Ciba-Geigy and Sandoz), the rich drug discovery heritage over the decades, their belief in investing in healthcare research to discover and develop new medicines. He talked about their support programs and how Novartis has been at the forefront in the fight against leprosy. Novartis donates the multi drug therapy for all people living with leprosy and it is committed to eradicating Leprosy from India. He reiterated Novartis’ commitment to increase access of medicines to patients. He discussed India’s future as a global pharmaceutical innovation centre, balancing profit and social responsibility.

Ranjit Shahani, also a friend and long time supporter of Max and FOM, joined in and a few emotional moments felicitating Max’s Pat and Amma (Viji)

Moving forward in Partnership: Max and its patient support group arm FOM

Pat Garcia-Gonzalez of Max shared a historical perspective on how, in 2004, on Viji’s suggestion, the two of them toured some major cities in India, and brought together a handful of like-minded volunteers from each city to form the Friends of Max City Chapters, in collaboration with leaders from Max’s team in India. What started off as a small group of people, today boasts of at least 200 leaders from all over India, who stand united in providing free support services to families affected by CML and GIST in India.

Pat said, “Since its inception, Friends of Max has served as the patient support arm of The Max Foundation. We are a united force. We are grateful for our partnership of so many years and full of hope as we look ahead to how much we can accomplish together.”

She announced the formalization of their long standing collaboration and the two organizations – Max and FOM – signed a landmark Memorandum of Understanding (MOU).

The session ended with the customary group photo of all the City Chapter leaders, as also the Max India team, Pat and Mr Shahani.

SESSION – 5

It was time for the Workshop Mela, which saw all the participants break into four groups to discuss crucial issues pertaining to the patients and caregivers. The topics of discussion being:

Workshop 1 – Volunteer Training: How to Identify, Train and Retain your most Valuable Resource.

Workshop 2 – Care for the Caregiver: Coping with the Diagnosis and its long term impact on the family.

Workshop 3 – Advocating for oneself: Insurance for Patients on Long Term Treatment.

Workshop 4 – Working with our Physicians: Bracketed in a lifelong relationship.

The diversity of the participants sure provided varied perspectives on a number of issues. Hopefully, all of which will be documented sometime soon.

Vote of Thanks and closing

Then, it was curtains down for LS-15 till next time. The participants proceeded for lunch, bonding with friends and an emotional Vote of Thanks by Viji Venkatesh and Sujeesh Sukumaran , both Trustees of FOM.

FOM Leadership Summit 2015 offered a platform for attendees to come together to discuss, debate and explore the many topics related to Patients (I prefer to say Survivors) and Caregivers. The summit was an excellent opportunity to socialize and build lasting relationships with other members and of course just have a lot of fun!

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By- Sailaja Kosuri, FOM Volunteer, Hyderabad