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Raising A Cup For A Cause!

Chai for Cancer is a unique awareness and fundraising campaign started in a small way by Viji Venkatesh to raise funds for cancer patients in need for basic amenities. It has come a long way in 7 years,  a simple yet appealing concept of sharing your cup of chai and contributing what you deem to be its value to the welfare of a cancer patient. 

Join the Chai for Cancer 2020 campaign by raising your cup and drinking to a cause! Post your Chaifie – A selfie with your cup of Chai along with the hashtags #chaiforcancer #chaifie#raiseyourcup#drinktoacause

Donate here and find out how everyone is participating at chaiforcancer.org

Your one cup of Chai can go a long way in helping a cancer patient live in dignity and hope!

Introducing ‘Chaiathon’!

Introducing to you all, dear FOM – The ‘Chaiathon’ ☕☕

Our unique project for WORLD CML DAY 2019

The Chaiathon is a Marathon which we can complete from the comfort of our home. No walking, no running – just ourselves and our daily cup of Chai. 

Beginning today 22/08/19 and concluding on 22/09/19 which is ‘World CML Day’. 

We have 30 days to show that we care. 

An event where we, FOM and our CML Community race to dedicate as many cups of Chai as possible between 22/8 and 22/9 which is World CML Day.

We can choose to dedicate one or five or ten or thirty cups of chai to ‘Chaiathon’. Only Rs.100/- per cup. 

All we have to do is go online and make a donation on www.chaiforcancer.org or https://friendsofmax.info/donate/

If you prefer to donate cash, you can visit our office in Worli or if you wish to give us cheques, you can courier them to us. Cheques are to be made in the name of -Friends of Max.

We are encouraging the CML family to donate to their own CML family members as it is we who know the struggles and challenges first-hand. This is our chance to help those of us who are less privileged, they who need our support be it to travel from distant villages to collect medicines or for their diagnostic tests and any other kind of additional support that comes in the way of their compliance. 

Our address is: Friends of Max, Secom Business Centre, A Block Basement, Shiv Sagar Estate, Dr. Annie Besant Road, Worli, Mumbai- 400018.

World CML Day 2018

CML QoL Survey: An effort to share the voice of FOM

Download PDF – CML QoL Survey

22nd September is World CML Day and this will be the 11th year of observing this important day in the community of those in whose lives the diagnosis of Chronic Myeloid Leukaemia has and continues to play a great part.

Until a few years ago, CML and its treatment was hardly spoken about. CML was listed as a rare cancer and the prognosis very poor indeed. That, however, is no longer true today.

Glivec, the Magic Bullet, burst upon the firmament of cancer therapy in 2001. Soon after, in 2002, Novartis put in place the first of its kind humanitarian access programme – Glivec International Patient Assistance Programme (GIPAP) with The Max Foundation as the managing partner, holding the hands of thousands of CML patients through their journey. GIPAP changed the face of CML and revolutionised its management.

Hundreds of physicians enrolled thousands of CML patients into this programme; patients who had no recourse to Reimbursement, access to Insurance and could not pay for the drug through private means.

Today there are more than 60 CML Patient Groups in the world and Friends of Max, with a membership that runs into thousands, is the largest of these. When we set up Friends of Max (FOM) as the Support Group Arm of The Max Foundation, I am not sure what we expected but what does exist today surpasses all expectations.

To use the World CML Day motto, “Today, Together”, FOM stands tall as a representative of more than 16000 CML patients. FOM is a testimonial to the strength and fortitude of thousands of CMLers who have redefined what it means to be Living with Cancer.

Amongst the CML family in FOM, are patients who were diagnosed more than 20 years ago and today living full and fulfilling lives. There are young boys and girls who were diagnosed when they were toddlers and who have now finished school and are about to embark on their graduate studies. We have amongst our fold, young adults whose careers were rudely interrupted by CML but who have now managed to rebuild their lives and navigate their career paths via a new normal and get back on to the tracks they were de railed from. Then there are women who only wanted to see their babies get up on their own two feet and today have been able to see them get married and settled . These are people from all socio economic backgrounds, from all walks of life and from the length and breadth of this vast land.
Teachers and students, truck drivers and vegetable vendors, lawyers and policemen, doctors and IT professionals, homemakers and artistes have all shown us what it takes to live with cancer.

These are people who hold in their experiences a fount of knowledge unique to them and to others which if shared can only improve efforts to make sure they continue in their journey with minimum road blocks and continue to achieve maximum mileposts.

The thought of engaging this respondent pool in a survey that could capture some of their experiences was daunting indeed. Spread over this huge land, speaking and understanding different languages, some connected and most not connected via technology, who amongst them we wondered, would most importantly, agree to participate? To agree to share their thoughts and feelings on a most personal, private condition that they may not have even shared with their closest family and friends? However, engage them, we did and we reached out in as many ways as possible – face-to-face in our office and at support group meetings, via phone calls, via our email group, via the WhatsApp groups and via SMS; we got them to take the survey.

We asked them about their experiences at their workplace, at home, in their schools and colleges; in their villages and towns; we asked whether they faced discrimination, about the role of the stigma of cancer in their day-to-day lives, we asked about factors affecting their quality of life and compliance issues and they responded.

We believe that FOM are a strong presence in the world of CML and have much to share with the global CML family. We envision this CML Survey exercise to be the first step to achieve a better understanding of the patient experience. We recognize the need to place emphasis on raising awareness about one life changing reality – living with chronic myeloid leukaemia (CML) and combat stigma by raising the voices of those facing this cancer.

Therefore, it is with the intention of sharing information and wider dissemination of these learnings through the FOM that we have undertaken this survey. This survey is a first step in that direction.

Respondent profile:

This survey has been taken by a total of 613 persons in the span of approximately a month. It is also important to state that the survey is most definitely not representative of the QoL of our complete patient pool and most certainly not the CML community in the country. However, we believe this is an important focussed, first step to understand the wider experiences of the CML community, not limiting their experience as patients but capturing their broad experience of living with CML.

 

 

Key areas of analysis

Respondent Profile Respondent Profile Age in years
Gender
Occupation
No. of years with CML
Location:
Medication
For All life impact Coping with Side effects
Being Compliant
Being Regular in Follow Up
Receiving Family Support
For All Career impact Completing your studies
Pursuing your chosen career
Coping with discrimination at work place
Effecting a change in your career
Having the support of your employer
For All Psychological
Impact
Dealing with social stigma
Coping with pity
Dealing with fear
Fighting depression
Facing one’s mortality
Giving support to peers
Only for answers below 35 years Young Adults people Going for higher studies
Finding a partner
Planning a family
Making and keeping friends
Only for answers Above 35 years Middle / Old Sharing with children
Educating Children
Planning retirement

KEY FINDINGS:

SIDE EFFECTS

• Age-wise: Of the total respondents, 69% respondents reported that it is very easy/ easy to cope with side effects. Only 4.8% of the respondents reported that it was very tough to cope with the side effects.

• Gender-wise: Of the total respondents, a majority of male respondents reported to finding it more difficult to cope with side effects.

• Location-wise: Across, locations, majority of respondents have reported that is very easy to cope with side effects. The patients’ location did not make a discernible difference in their capacity to cope with side effects .i.e no significant difference in the respondents of big towns, Metros v/s those in small towns, villages.

COMPLIANCE

The majority of the respondents have reported that compliance is easy. This is true of respondent groups across Age, Gender, Location and No. of Years on Medication. It is also interesting to note that the patients’ location has not adversely affected their compliance. Despite access issues, respondents in small towns and villages have reported to compliance being easy. This can be attributed to repeated sessions / workshops at Patient Support Group Meetings; follow-up calls and patient counselling by the Max team and most certainly, also to the interventions of their treating physicians as well.



DISCRIMINATION

While most patients reported that they did not face any discrimination, amongst those who reported discrimination, it was predominantly reported amongst the male respondents. It is worthwhile to note that during Direct Interviews with some respondents, most patients were extremely grateful to their employers for their support in terms of leave for consultations for periodic monitoring. This is true for patients across all locations.



FUTURE PLANNING

Of the total respondents, predominantly the male respondents found it difficult to plan their retirement. This can be attributed to the fact that in India, male members are the predominant breadwinners of the family and the pressure on them to support their family alongside living with CML is quite high. This is reflected in our findings for the data point Educating Children as well. Given the family dynamics in India, retirement typically planned only after buying a house and settling children. Moreover, as per the Survey findings, the burden of financial planning is higher on salaried professionals than on others.


GIVING SUPPORT TO PEERS

75% respondents have reported that is easy to give support to peers. This can be attributed to the vast outreach of the FOM network through multiple channels like Patient Support Group Meetings, Social Media, WhatsApp groups, Email and other means of communication. This reinforces the work done by the Max Foundation team in India and the FOM volunteers for patient support and advocacy.

FAMILY SUPPORT & SHARING WITH CHILDREN

Overall, the majority of the respondents have reported to receive their family support easily. Interestingly though, when looked at closely from the gender perspective, the women have reported to find it tougher than the men have. Given that most respondents have reported to receive family support easily, it is also noteworthy that majority of respondents reported to not having much difficulty in sharing their diagnosis and their changed circumstances with their children- this is true across cities, towns and villages.

FINDING A PARTNER

In the age group of 31-40 years, where this would be a relevant concern, 205 respondents have reported that is tough to find a life partner. Looking it the data gender-wise, men have mostly reported to find it difficult to find a life partner. This is attributable to the perceived dependency on the male members to provide long terms financial security and stability to the family.

FACING ONE’S MORTALITY

As reported by respondents, it can be inferred that the longer the period of living with CML, the easier it is to face their mortality. This can be credited to a multitude of factors that include acceptance, family support, employer support, the role played by the Physician and the advocacy work done by the Max Foundation team in India along with FOM City Chapter Leaders. The FOM CCL’s and volunteers are inspiring role models leading by example, supporting and inspiring their CML brethren.

The Survey analysis is primarily Quantitative. However, we have supplemented the Quantitative data with Qualitative analysis as well. This has been done with two open-ended, directed questions that encapsulate the overall Quality of Life of people living with CML; beyond their diagnosis.

They are:

1. If you were to be asked to share one way in which being diagnosed with CML and the path your life took thereafter changed your life , what would that be ?

2. How has being part of The Max Foundation and it’s Support Group arm, Friends of Max made a difference in your life since diagnosis?

The responses have given an immensely rich insight into how these patients have struggled with, coped and eventually come to terms with life with a chronic condition.














Download PDF – CML QoL Survey

Welcome to Friends of Max!

Patient Support Groups: Helping Patients and their caregivers cope with the diagnosis of Cancer

A diagnosis of cancer can bring out strong fears and anxieties in the affected family or social unit. While timely access to treatment and family support can go a long way in erasing these fears, there is a growing sense of isolation that sets in which can have a big impact on patients’ emotional well being. No one knows what someone is going through unless they are going through it themselves. Patient support groups address this need of sharing and learning from each others’ experiences.

Although in western countries patient support groups are an established section of the health care community, in many other countries this is still a novel approach to self help. That is, until now. In the past few years The Max Foundation has fostered the formation of patient groups in the communities where we operate as a means to build community resources and provide patients with emotional support.

(more…)

Non Compliance – Presentation by Milan Hakani & Shashikant Jakhade

The Max Foundation and Friends of Max organized a Virtual Patient Support Group for CML & GIST patients in Maharashtra on 21st May. At this meeting, FOM Pune City Chapter Leaders – Milan Hakani and Shashikant Jakhade delivered an in-depth presentation on “Reasons for Non-Compliance” amongst patients. For this presentation, the duo decided to base their presentations by studying a sample of patients and caregivers they have met previously in other meetings and elsewhere.

Compliance has been one of the most important workshops at the patient support group meetings in the past. It is a topic that has been emphasized upon by The Max Foundation at every meeting. After the City Chapter Leaders delivered their well-received presentation, we asked them what their process was in creating it. Here’s what Milan Hakani had to say –

To analyse the Non-Compliance of medicine we decided to study a small sample of people. While selecting the sample we realised that more or less the reasons of non -compliance were pretty much similar, just their situations differed. Hence, by selecting this sample we tried to cover all the major strata of society. Sample was selected considering the age, financial status, type of employment and proximity to the place where medicine is available. 

Monika Ahuja – Miss India Cancer Pageant 2022 “First Runner Up”

Friends of Max is proud to share that our City Chapter Leader from Delhi, Monika Ahuja has been crowned as the “First Runner-Up” and “Ms. Personality” at the Miss India Cancer Warrior Pageant 2022.

Monika, an AML Survivor herself, is one of FOM’s most active patient leaders from Delhi. She has been a part of every FOM event in the city since 2004 and has also hosted a Chai for Cancer Adda at her home in 2016.

Monika is a shining example of the fact that there is life after cancer. “The journey wasn’t easy and the acceptance wasn’t there, but willingness to live and fight back was always there”, says the graceful Monika at the finale of the pageant.

Patient Support Group Meeting for Mumbai

The Max Foundation and Friends of Max in association with Tata Memorial Hospital organized a Support Group Meeting for CML & GIST patients in and around Mumbai on Sunday the 5th of June. This was the first in-person support group meeting held in over two years after the COVID-19 lockdown restrictions were put in place. 

It was attended by over 127 patients, caregivers and volunteers and saw the full support of The Max Foundation’s Mumbai team. Patients from far away cities who were in the city to visit their doctors also decided to attend this event as did our Patient Leaders from Pune who decided to drive down and make their presence felt.

By 9 AM, the registration desk was abuzz and big hugs were exchanged all around as the patients and caregivers arrived early at the venue, and met each other and the Max team for the first time in years. The Max Foundation’s Programme Officer-in-charge for Mumbai, Anshika Tandon, arrived from Bhopal to attend and coordinate the event.

After a delicious “meet and greet “ breakfast, the participants were ushered into the auditorium and our MC for the day, Prasad Kothekar (Max Programme Coordinator) called the meeting to attention. As is tradition, the meeting started with everyone singing the national anthem in unison. Urvashi Negi (Max Programme Coordinator) kicked off the proceedings with a detailed presentation about the mission and vision of The Max Foundation. 

Dr Shripad Banavali (Chief Guest – Addl. Prof. & Cons. Hematologist-Oncologist) took to the podium and expressed his joy at seeing all the patients under his care come together after a long time. He also gave the Max team his heartfelt thanks for the way they steered the patients through the pandemic to ensure that despite a nationwide lockdown, the patients received their regular supply of medication.

A signature feature of the Mumbai meetings is the presence of FOM Trustees Pramod George and Nirmesh Prakash, who are more popularly known as “Bhai & Bhidu” – two loveable characters taken straight from the streets of Mumbai. Through the typically endearing and amusing voices of these two characters, Pramod and Nirmesh have for years passed on the important message of compliance, periodic monitoring and regular follow up in an informal yet compelling manner. This episode also highlighted following covid appropriate behaviour and gratitude towards all the health care professionals who cared for us in these tough times.  They also spoke about the recently launched FOM Membership drive and other initiatives that benefit the patient community.

Another great addition for our patients at this meeting was a session by Dr Anjali Nair (Ex-Dietician, Tata Memorial Hospital) on “The Role of Diet & Nutrition in Cancer”. She shared several important tips for our patients to follow and lead a healthier lifestyle and better manage the side-effects arising out of treatment with TKIs like Imatinib and other medication.

A unique feature of this meeting was the expert panel, which was comprised not of physicians, but of patient leaders Shashikant Jakhade, George Colaco and Dr Veena Parmar along with Dr Aditya Dhanwat (caregiver), Dr Dipanwita Maiti (Programme Head, The Max Foundation) and Dr Anjali Nair. Moderated by Viji Venkatesh (Region Head, The Max Foundation), the panel answered various Frequently Asked Questions on the different stages of CML, side-effects and diet, and also took questions live from the audience.

Friends of Max’s Communications Manager, Aashray Paul, shared his presentation on the various initiatives of the organization and encouraged the audience to participate more actively in FOM’s social media interventions.

Post lunch, as the participants took their seats in the auditorium, they were introduced to The Create Foundation team which had organized an interactive “De-Stress with Drama” workshop for everyone. The dynamic team of instructors engaged all the 100+ patients and caregivers in different interactive performance activities. These workshops are a good medium to allow our patients to overcome their inhibitions and freely interact with each other. 

Viji Venkatesh then spoke about Chai for Cancer – her brainchild and the awareness-cum-fundraising initiative of Friends of Max. Viji shared an encounter with a patient which inspired her to start the initiative to support the unmet needs of cancer patients from weaker socio-economic backgrounds. She also shared the story of how CFC has grown over the years in terms of both its impact and reach.

FOM Mumbai City Chapter Leader Rashmi Sachade delivered a heartfelt Vote of Thanks in her signature musical style and the meeting was brought to a conclusion. The patient leaders stepped out of the auditorium, reached out for their cups of tea and engaged in casual conversation with each other. Many attendees also visited the Chai for Cancer stall, checked out the merchandise and donated generously towards the cause!

The day-long affair of sharing and learning together finally came to a satisfying end as everyone bid their adieu and promised to meet again very soon.

Virtual Support Group Meeting for Maharashtra

The Max Foundation and Friends of Max organized a Virtual Support Group Meeting for CML & GIST patients on 21st May 2022. This meeting was attended by 115 participants including patients, their caregivers, physicians and the Max team. Another 136 people joined this meeting live on Facebook.

Max Programme Officer Anshika Tandon welcomed the attendees and introduced the physicians present at the meeting, following which Max’s Priyanka Kandalgaonkar and Prasad Kothekar delivered their enlightening presentations on The Max Foundation’s work and its Max Access Solutions programme respectively.

Friends of Max Trustee Pramod George introduced Friends of Max as the support group for CML & GIST patients in India and spoke about how the patients and caregivers across India connected through the organization act like one big family. “Let us help each other and create a better and more helpful world for ourselves”, he said as he shared personal anecdotes on how they have helped him in the past.

The esteemed panel of physicians present at this meeting included Drs. Jayant Indurkar, AK Ganju, Amol Dongre, Pritesh Junagad, Sameer Melinkeri and Smita Gupte. Moderated by Dr Amol Dongre and Anshika Tandon, the physicians shed light on various topics of importance for the attendees such as side effects of treatment, Treatment Free Remission, COVID vaccines, Family Planning and more.

A unique offering of this meeting was a talk by Dr Vinay Chapalgaonkar (Psychiatrist, Chapalgaonkar Psychiatry Hospital, Aurangabad) who spoke about the “Impact of Cancer on Mental Health” and shared some simple yet effective steps that can help patients take care of their emotional wellbeing.

Amruta Patidar, FOM City Chapter Leader from Pune delivered a heartfelt Vote of Thanks. Expressing gratitude towards The Max Foundation, she says how the people at the organization have taught her that “Life is beautiful despite the problems and we must face it with a smile”.

FOM Communications Manager then spoke in detail about Friends of Max as an NGO, its various initiatives, Chai for Cancer – the fundraiser, and the recently launched FOM Membership programme and its perks.

FOM City Chapter Leaders Abhishek Patidar and Nikhil Batra in the form of a light-hearted dialogue explained the importance of compliance to patients, whereas Shashikant Jhakade and Milan Hakani delivered a wonderful presentation on why patients may fail to be compliant.

With that, the evening of sharing and learning together was brought to an end and the participants casually interacted with each other, thanking the team for their efforts in organizing the meeting and promising to meet in person in the near future.

Virtual Patient Support Group Meeting for Odisha – Report by Rabindra Kumar Gouda

Virtual Support Group Meeting for Odisha – Report by Rabindra Kumar Gouda

The Max Foundation and Friends of Max hosted a Virtual Support Group Meeting for CML and GIST patients in Odisha on 30th April 2022 from 4 PM to 6 PM. This meeting was held on a virtual platform.

The meeting started on schedule and more than 140 participants joined in. Another 100 people watched the meeting Live on Facebook. Sudha Samineni coordinated the proceedings of the meeting very well to make it a success. Dr Debashish Das was the moderator of the physicians’ panel discussion. FOM Trustee, Mr. Sunder Krishnan, spoke about Role of Patient Leaders in Patient Outreach Programs as well as FOM membership and its benefits.

Insights from the panel of physicians-

Dr. Ghanashyam Biswas discussed recent advances in CML and possible future treatments. He also explained how to manage side effects of treatment in disease. After some deliberation with him, Dr. Debasish Das asked him some FAQs for the benefit of participants.

Dr Prabodh Das shared his insights on TFR and followed his talk by answering some frequently asked questions.

Dr R.K. Jena shed light on the importance of communicating with treating physician and explained the same in great detail.

Dr Rajeeb Nayak spoke on managing CML during the COVID-19 pandemic which was very useful for patients.

Ms Praksmita Rout delivered a presentation on Diet & Nutrition and shared her invaluable advice for our participants.

Aashray Paul, FOM Communication Manager and Om Prakash Agarwal also spoke about the Friends of Max in detail which was encouraging for patients.

FOM Bhubaneshwar City Chapter Leaders Gitanjali Gouda, Kavita Agarwal, and Dr Pravakar Sahu spoke on the role of caregiver which was really motivating and inspiring.

Patients and caregivers were very happy and expressed their feelings and gratitude in the WhatsApp group that was created for the meeting. Also expressed this type of meeting should be conducted half yearly or yearly on a continuous basis.

Vote of thanks was given by Rabindra Kumar Gouda after the meeting.

– Rabindra Kumar Gouda, FOM Bhubaneshwar City Chapter Leader.

You can watch the replay of this meeting on our Facebook page by clicking here.

Virtual Support Group Meeting for Gujarat

The Max Foundation and Friends of Max organized a Virtual Support Group Meeting for CML and GIST patients in Gujarat on 27th March 2022. This meeting was attended by almost 150 patients, caregivers, physicians and saw the complete support of the Max South Asia team.

Max’s Programme Officer Anshika Tandon started off the meeting with an impactful presentation on The Max Foundation’s vision, work and impact over the last 25 years. The spotlight then shone on FOM Trustee Ushakant Shah. “I am fortunate to be diagnosed with a disease like CML”, he said as he shared his inspiring talk on the role of patient leaders, the work of Friends of Max, the FOM Membership Programme among other topics of utmost importance to the patients and caregivers present at the meeting.

Max’s Programme Officer Priyanka Kandalgaokar then introduced the expert panel of physicians at the meeting which included Dr Asif Shaikh, Dr Babita Hapani, Dr. Bharat Parikh, Dr Chirag Desai, Dr Deepa Trivedi and Dr Sandeep Shah. The meeting also saw a welcome appearance by Padma Shri Awardee Dr Pankaj Shah. Each of the physicians shared their knowledge and insights into various aspects of CML and GIST.

The most awaited segment – “Ask the Experts” was moderated by Dr Asif Shaikh. The physicians not only elaborated and answered every question submitted by the patients before the meeting, they also replied and commented on the questions received live.

Max’s Programme Officer Sudha Samineni generously thanked the physicians for their time and the volunteers, City Chapter Leaders and the Max team, for their efforts in helping organize the meeting. She was followed by Max Programme Coordinator Urvashi Negi’s presentation on the MAS Guidelines.

FOM City Chapter Leaders shone bright as they shared their incredible journeys from being patients to patient leaders in an awe-inspiring segment called “CML Does Not Define Us”, moderated by Max’s Region Head, South Asia, Viji Venkatesh. What was common in each of their stories was an undying spirit of living life to the fullest, the emphasis on compliance and a feeling of gratitude towards The Max Foundation and Friends of Max.

Karan Vyas, diagnosed at the age of 9, shared how his passion for sports and rifle shooting helped him remain focused on what was important. Ajay Gandhi spoke about how he feels that Glivec has reduced CML from being a life-threatening disease to a “Samanya Rog” (Ordinary disease).

Shital Kiran then spoke about the strides in medical advancement in terms of TKI therapy. “The real disease is in our minds, not our bodies”, he said. Ghanshyam Vyas spoke about how taking the medicine regularly has helped him work long hours and support his family despite the disease.

Vikramaditya shared how being diagnosed with CML gave him the courage to change his career path and pick up something he was passionate about. Rashmi Sachade’s spirit was unmatched as she shared her journey as a GIST patient and how she recently fulfilled her dream of dancing at her daughter’s wedding.

This segment was followed by a presentation by FOM Communications Manager Aashray Paul, who spoke about the various initiatives and the social media outreach of the organization as well as the importance of fundraising for NGOs

With that, the Virtual Meet was finally brought to a close by Anshika Tandon. It was truly an evening of “Sharing and Learning Together”, in line with the motto of Friends of Max. At the time of conclusion, the meeting still had a presence of over 50 attendees

You can watch the live replay of the meeting by clicking on the link below-

https://fb.watch/c3HLKKgdWX/

Patient Support Group Meeting for Kerala – Report by Ravikumar

I am proud to report on the second Virtual Patient Support Group Meeting in Kerala which was held on 26th February 2022.

Having experienced the first virtual meet and the subsequent online meetings we attended, everyone was comfortable and felt like we are attending a live session. The web-based live session was attended by more than 100 participants.

The meeting started with a welcome speech by our dearest Beena Chechi with an introduction and agenda of the meeting. It was for the first time we had our FOM Trustee Pramod George from Mumbai joining to support and motivate our patients. He spoke regarding “The Role of Patient Leaders in Patient Outreach Programmes” where he explained how patients can become leaders, how to convert one’s weakness to strength and how to become a role model. He also shared a personal experience of his recent visit to Kerala, how the patient network and the timely intervention of a patient leader helped him to get medicine without any delay.

Regional Head of Programmes, South Asia, Dipanwita Maiti invited the expert panel of doctors to share their experiences with the various aspects of managing CML. The discussion was very informative, and the physicians explained patients the importance of being regular in treatment and medication. We had Dr Narayanankutty Warrier, Dr K Pavithran, and Dr Sanju Cyriac on the panel.

The Q&A Session with medical experts was well moderated by Dr Sanju who explained in a very simple and easily understandable manner while compiling all the queries. In the session the expert doctors showered their kindness as answers to the very common as well as the rare areas of CML and the side effects of Imatinib /Glivec, the food restrictions, messages to the care givers, monitoring of CML, regarding the family life of patients, views and experiences of our doctors on CML patients and their family and social life, regarding improvement in the quality life of CML patients with the magic bullet. Also, how to take precautions against the Pandemic, regarding the Covid vaccine etc. The session had our senior doctors Dr Narayanankutty Warrier, Dr K Pavithran and Dr NP Prakash.

The Vote of Thanks was delivered by Priyanka Kandalgaonkar.

Amma then spoke about importance of compliance, and she encouraged patients for compliance.

Later, Shalini explained the MAS guidelines and importance of compliance with a presentation. She also included the challenges faced for compliance.

Beena Chechi made the session lively by asking our patients to share their views on compliance.

FOM City Chapter leader Sajeevan shared his experiences with CML and how it impacted and improved his approach towards life. Also, he explained about FOM and its activities in a very simple way. Our Communication Manager Aashray Paul explained about the role of Friends of Max in a very beautiful manner. Our Trustee Pramod George also shared how FOM helps the community by sharing, caring, and learning.                 

This was followed by a sharing and learning programme where Friends of the Magic Bullet, Glivec, shared their experiences with CML. The testimonials were from Nandini, Chitralekha and Rajeevan. The speakers shared their lessons on impact of CML and Glivec in their lives.

Punnya was the centre of attention as she started her companionship with the Magic Bullet as a paediatric patient. She motivated us with her energetic and confident approach towards the disease and her positive mindset. Recently she had an all-India tour and was well appreciated for being an inspiration to all.

It was very difficult for all to depart from the meeting, even though it was a virtual meet, we felt as if everyone was present in front of us and it was very difficult to wind up.

Thanks a lot to Amma, Beena Chechi, Dipanwita, Priyanka, Pramod, Aashray, Shalini and all the FOM members and the doctors for conducting this virtual meeting.

– Report by Ravi Kumar, FOM Kerala City Chapter Leader

Virtual Support Group Meeting for Jammu & Kashmir – Report by Vir K Bhat

The meeting started at 1600 hrs with brief introduction by Ms Priyanka coordinator of the meeting. She informed that it is first time that FOM is organizing the meeting of J&K chapter though some participants were from Punjab and Himachal Pradesh.  It was followed by the welcome address from Ms Viji Venkatesh (AMAA) who is leading from the front to this sacred mission for CML patients. She informed that FOM/MAX are the organizers and thanked Novartis for supporting the whole programme for providing the medicines to CML patients throughout the world. She spoke of how Max was working with many other partners in the pharma world for other medicines in certain countries .She welcomed all the doctors and the participants and was in the usual charming mood. She inspired every one and in fact infused energy to the cancer fighters.

The first session of the meeting was of doctors and was coordinated by Dr. Dipanwita of Max. The three eminent oncologists/radiologists were on the board. Dr Reshma Roshan from Srinagar, Dr. Ashotosh Gupta from Jammu and Dr.Pankaj Malhotra from PGI Chandigarh.

Dr. Reshma Roshan spoke on the CML, its history, various phases and its treatment. She also replied many patient queries in the session and shared her experiences in dealing such patients. She explained in detail that the other ailments and surgeries of CML patients shall be delt as of other normal persons. She explained that the imatinib (medicine of CML) shall not be stopped without the advice and close supervision of the Doctor.

Dr. Ashotosh Gupta spoke on the symptoms of CML, its detection. He too replied the queries of the patients and also shared the experiences and difficulties being faced by the patients during the treatment. He was of the opinion that the patients are actually under fear psychosis and that is why they always complaint many other ailments. He advised for healthy diet to patients and the patient shall in no case switchover to any other medicine like Disatinib etc without the advice of the doctor.

Dr. Pankaj Malhotra spoke in length on the myths of the CML, he replied the queries of patients and shared many latest researches with regard to management of CML. He cleared all the doubts of the patients and in fact boosted the patients to enjoy normal life. He shared that in 40% cases where the medicine was stopped the CML has relapsed. He too advised to stop the medicine only after the advice and close supervision of the doctor. He informed that the doctors in PGI are available to CML patients even on phone or email, they shall share their reports first the advice will be provided accordingly. In case of pediatric CML patients, the growth may get hampered and thus needs to be investigated by regular checkup by the concerned doctors. He advised complete denial to smoking and drinking of alcohol to patients. He cleared the doubt that grapes are allowed, however the grape fruit shall not be taken by the CML patients.

The second session was of compliance presentation by Shri Prasad of Max Foundation. The presentation was beautiful and understandable to a layman. It was very informative and research-based.

Ms Anshika was also coordinating the intervals between the sessions and informed that on 4th Feb 2022 is the WORLD CANCER DAY and the FOM want to convey its message for the cancer patients. She requested all the participants to deliberate and air their experiences and feelings.

Sh. Aashray Ji also provided the vital information of Friends of Max and informed that FOM would like to include all 18000 patients and more in its programme in India and how from 23 cities the city chapter leaders are connected and are working for the mission.

In the last session the patients from different places also shared their views, concerns and experiences. Sh. A.K.Sood from Shimla who was detected in 1992  for CML shared his experiences, Sh.Vir ji Bhat from Jammu who was detected in 2002, Sh. Sh Tek Chand from Jammu , Sh Umar Gul from Kashmir also shared their views. As usual Ms Viji Amma thanked all the participant’s and Ms Anshika Tandon presented the vote of thanks.

– Vir K Bhat, FOM Jammu City Chapter Leader

Chai for Cancer End of the Year Meet & Greet – Report

The Max Foundation and Friends of Max organized an “End of the Year Meet & Greet” themed Chai for Cancer Adda on 18th December 2021. More than 80 FOM City Chapter Leaders and the Max team in India and Nepal attended this Adda which saw attendees sharing what they are grateful for in 2021.

The meeting began with the Max team’s Priyanka Kandalgaokar recapping all the events and Chai Addas that had taken place and the new initiatives and various collaborations launched throughout the year.

The Max Foundation’s Region Head for South Asia, Viji Venkatesh then took up the mantle as she shared her message about the resilience that the FOM Community has shown during the times of COVID and after. “Chai for Cancer embodies the love we have for each other”, she added as she spoke about the immense support that the fundraiser has seen in these trying times.

This was followed by a message from FOM Communications Manager Aashray Paul, and a video compilation of some special moments over the virtual meetings prepared by the Max team.

Dr Pankaj Malhotra, who was kind enough to join us on this evening shared an inspiring message of positivity and gratitude, highlighting all the technological and scientific advancements made in the last two years and the increase in basic hygiene among the masses.

Priyanka Kandalgaokar then picked up “The Cup of Gratitude” – our new addition to this meeting. Everyone listened in with rapt attention as the Max team, and FOM Trustees and City Chapter Leaders took turns raising the Cup of Gratitude and sharing what they were thankful for in 2021.

This was followed by a Vote of Thanks from the Max team’s Anshika Tandon and a pledge by all attendees to raise their cups towards Chai for Cancer and support cancer patients in need!

You can watch the live replay of this meeting using the link below-

https://fb.watch/a1qrBipyJX/

FOM Workshop on Social Media – A valuable tool.

Report by Abhishek Patidar

Social media is a powerful tool. It ensures you reach the audience and deliver your message the way you want to.

The Friends of Max team often uses social media as a tool to reach out to our patients and support groups. Recently we held a workshop on “Social Media as a relevant tool”.

We began the session with 120 participants consisting of all age groups. The session included:

  1. A few super charged ones that spent most of the day on social media.
  2. There were also a few who use social media just for updates.
  3. Some were not the nerd kinds, the ones who use media only few times a week.
  4. A few were present just because of FOM.
  5. And some were out of the league, the ones who are not fans of social media

The session started with a question: Why social media?

The most common answer was that it’s the easiest way to reach the crowd. And another common answer was that it’s easily available and can be accessed from anywhere (through any device).

FOM Communications Manager, Aashray Paul delivered a presentation on FOM and Chai for Cancer’s social media interventions introduced in the past year, how they have been used during the pandemic, the growth of our pages and the results of FOM’s latest survey – conducted specifically for this workshop.

The Max Foundation’s Programme Officer Priyanka Kandalgaokar then introduced Dr Bhawna Sirohi, Altaf Makhiawala and our very own Amma, who were the experts of the workshop. They shared their experience and best practises on how and what to do on this platform to make it relevant & useful.

Dr Sirohi, who is Lead Oncologist at Apollo Proton Cancer Care and an ardent supporter of our Friends of Max and Chai for Cancer shared her experience and how she proceeds with her campaign. She insisted to check all the information before starting, forwarding or endorsing anything. She also shared her experience about fake/misleading forwards which are ruining this mode of communication and how to prevent them.

Some very important points shared by Dr Sirohi were:  

  1. Do not endorse/forward unsolicited information: before proceeding with any information confirm with the subject matter expert, deep dive before making it public. Stop there if you are not sure about the information.
  2. You will be responsible for your endorsements.

We then moved to the next section. Altaf, an expert in the realm of communications, explained the best practises that are followed at the IKEA foundation. He shared his social media journey, the good and the bad, also the do’s & don’ts.

He insisted on few pointers which he follows and advised to keep in mind to have a successful campaign:

  1. Do not feel bad if you do not have likes or comments in your post.
  2. Enhance your existence by engaging with people, comment, like, share meaningful information. Follow people who have good content.
  3. Use emoticons, they save time and pass on the message.
  4. Keep your profile up-to date by frequent reviews (follow/unfollow/re-follow)
  5. Keep an eye on your followers (who follows/unfollows/spam followers)

We learnt a lot of new techniques & best practises from Altaf’s experience.

Now our very own Amma took charge of the meeting and shared her knowledge & experience.

She shared her journey on being super active and how she manages her social media accounts. Amma shared her dos and don’ts and how to keep the campaign clean and stay out of any controversies.

This was followed by the Open Discussion segment, moderated by Amma and The Max Foundation Programme Officer, Beena Narayanan. The ball was rolled to city chapter leaders who shared their experiences with social media, how this platform is helping them to stay together & close to their family & friends. How this platform is helping everybody in getting back together in this difficult time.

Dr Jude (who is not a social media person) shared his opinion about social media and how he is completely off from the grid and how does stay updated.

The Max Team’s Sudha Samineni then spoke about her role as the Communications Manager for The Max Foundation Global and Anshika Tandon brought it to a close with her Vote of Thanks.

The workshop was very informative, we discussed almost every aspect of social media. My outttake from this workshop is not to blindly believe anything that appears on your newsfeed and be vigilant about the fake news/ disinformation. Just like all the other things in the world social media also has to face good and bad , right and wrong – it’s upon us what we choose.

Besides, it’s surely a great place to be in touch with the world and motivate others

– Abhishek Patidar, FOM Pune City Chapter Leader

You can watch the replay of this workshop on our Facebook page by clicking here.