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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…)

Lucknow Meeting Report by Arun Bhargava

A CML and GIST Patient Support Group Meeting was organized by The Max Foundation for Friends of Max, on Saturday, 6 April 2024, at Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow. Arun Bhargava, Kanpur FOM City Chapter Leader, was interviewed and asked to share his views:

At meetings like these patients with their caregivers and family feel a sense of relief to know that they are not alone in this CML journey. Talking and sharing of similar experiences makes them feel more confident and hopeful. However, there is also a feeling of empathy and compassion that one encounters while meeting patients from diverse socio-economic strata. We all know facing a CML diagnosis can be a challenge, but when it is also compounded by a financial crunch, I am sure it makes it even more difficult.

Our first meeting was in year 2007 held in a small room at the famous MB Club of Lucknow. Back then those were the formative years of Friends of Max and we were still learning. Cut from there to the recent Patient Support Group Meeting held at SGPGI Lucknow on 6 April 2024, FOM has come a long way. From audio visual aids to conducting workshops to designing systems and processes to ensure meetings are conducted smoothly, are all in place. These are instrumental in conducting effective meetings and delivering patient centered outcomes. The current meeting was no different. We had many patients coming from in and around Lucknow and leading physicians who attended the meeting to make it a grand success.

During the meeting I met many patients who travel from far flung areas of UP to visit their treating physicians at Tata Memorial Hospital, Mumbai, because they feel it is only there that they will receive the right treatment. With SGPGI in Lucknow, having the latest state of art infrastructure and very qualified oncologists and physicians, I would like to see more and more physicians from SGPGI take in more of such patients. This will enable the patients to receive the best treatment without having to incur the extra cost towards travel, lodging and boarding. I think this is an area that I would like FOM to actively engage in, in the future.

At the meeting I met an elderly gentleman around 70+ years old. He had come with his daughter, CML patient, who had recently lost her husband. He was naturally worried, but after meeting the FOM family, some of his anxiety reduced. I have shared my number with him and like him with many others. Today I receive so many calls from patients and I hope, spending those few minutes answering their doubts and questions I am able to console and comfort them and do my duty as a FOM City Chapter Leader.

Patna Meeting Report by Nitesh Kumar Verma

A CML and GIST Patient Support Group Meeting was organized by The Max Foundation for Friends of Max, on Saturday, 30 March 2024, at AIIMS Patna. Nitesh Kumar Verma, local FOM City Chapter Leader, was interviewed and asked to share his views:

Patient Support Group Meetings give strength to all CML and GIST patients. The interactions are very healthy and energetic. Unlike a regular patient group meeting, FOM meeting is a platform where patients can meet other patients who are positive minded and after meeting such patients, help them to also feel more encouraged and motivated.

These meetings act as a fresh lifeline which revigorate all patients and help them face their cancer journey with renewed energy, positivity and hope.

I have witnessed many changes over the years. Today we have digital audio-visual presentations reflecting our previous meetings from across India and inspiring patient stories to encourage patients. The session with Physicians and the new workshops helps patients to learn about the latest developments from the world of CML from reliable sources. This helps us to stay updated and make informed choices.

In future meetings I would like to see dance and music used in some way to give an opportunity for patients to bond with each other and at the same time help us

showcase our skills.

What I notice is the remarkable change in patients from their first FOM meeting to the next meeting and every progressive meeting thereafter. There is so much more confidence in the patient, they now come excited to the meetings and with double energy! It is always a pleasure.

Thiruvananthapuram Meeting Report by Punnya MK

At the Patient Support Group Meeting organized by The Max Foundation for Friends of Max, on Saturday, 2 March 2024, for CML and GIST patients in Thiruvananthapuram, Kerala, Punnya, local City Chapter Leader, was interviewed and asked to share her views:

  1. How do these gatherings impact individuals, and what emotions surface when connecting with the FOM Community?

There were two respected oncology specialists present in the meeting. I found many patients and caregivers engaging with them directly to clarify their doubts. It was a great opportunity for patients and their families to get first hand opinion from these specialists. I could actually see how comfortable each and every one was, in a community of their own , spending time with each other.

2. Now it has been 20 years since we have been doing patient support group meetings, how do you think the meetings have evolved, what are the new changes in the discussions and workshops that you are seeing?

It was my first time attending a proper FOM meeting even though I’ve attended some Chai for Cancer and other small programs.  It was a great experience.  We get to meet so many inspiring people from Kerala and learn from their cancer journey experiences. All the sessions in the meeting were informative and useful. There was a doubt clearing section in which patients asked their doubts and specialists gave them solutions. There was another session where a leading dietician shared an outlook on how to have a proper diet and also shared diet suggestions for different health conditions. This session too was followed by a question-and-answer session. Last but not the least the Volunteer Training session was both very interactive and interesting.

3. What would you like to see in future meetings?

To be honest, the meeting was beautifully curated. Each session was really well thought out, informative and well planned. So grateful to Shalini Mam and Beena Mam for a great job done. It was also very heartwarming to see the high involvement from patients and their caregivers. In the future I would like to see more patients joining in our meetings.

4. In your experience with Support Group meetings, can you share a specific instance where you witnessed a notable impact or positive outcome for a patient?

As I mentioned overall the meeting was excellent, however what stood out for me in this meeting was the moment when Viji mam asked the patients and their families as to who all were ready to become FOM volunteers. When she invited them to step forward and come on stage, we saw patients from old to young came up on to the stage. In my opinion this was the defining moment of the meeting and also helped to explain the impact of such meetings. It was truly inspiring and motivating.  In a nutshell I think we achieved the aim of the meeting in that moment, I am so glad that I could witness it.

रायपुर मीटिंग से धर्मेन्द्र कुमार सिंह की रिपोर्ट

शनिवार, 17 फरवरी 2024 को रायपुर में CML पेशेंटस के लिए द मैक्स फाउंडेशन  और फ्रेंड्स ऑफ मैक्स द्वारा आयोजित पेशेंट सपोर्ट ग्रुप मीटिंग में, स्थानीय सिटी चैप्टर लीडर धर्मेंद्र कुमार सिंह का साक्षात्कार लिया गया और उन्हें अपने विचार साझा करने के लिए कहा गया:

  1. पेशेंट सपोर्ट ग्रुप मीटिंग्स पेशेंटस और करगिवेर्स को कैसे प्रभावित करती हैं, और FOM समुदाय से जुड़ने पर कौन सी भावनाएँ सामने आती हैं?

कैंसर शब्द सुनकर मन में एक ऐसा डर समा जाता है कि लगने लगता कि अब जीवन में कुछ रखा ही नहीं है, यह जीवन का अंत है। महंगा इलाज और उसपर परिवार की देखभाल- यह सब करना आसान नहीं होगा। पर फिर द मैक्स फाउंडेशन और फ्रेंड्स ऑफ़ मैक्स से जुड़ने के बाद यह सब आसान हो जाता  है। इस बिमारी से लड़ने में द मैक्स फाउंडेशन और फ्रेंड्स ऑफ़ मैक्स की महती भूमिका रही है। परिवार समाज भले ही हमें अलग नजरिए से देखता हो पर द मैक्स फाउंडेशन और फ्रेंड्स ऑफ़ मैक्स के रूप में हमें एक नया परिवार मिल गया है । ये सिर्फ संस्था ही नही हैं , ये एक परिवार हैं । हमें अपने आप को इस का सदस्य बनने पर गर्व है। अम्मा का स्नेह हमारे लिए एक उर्जा का कार्य करती है।

2.  अब FOM को पेशेंट सपोर्ट ग्रुप मीटिंग्स करते 20 साल हो गए हैं, रायपुर में यह तीसरी मीटिंग है | आपको क्या लगता है कि मीटिंग्स  कैसे विकसित हुई हैं, डिसकशंस  और वर्कशॉप्स  में आप क्या नए बदलाव देख रहे हैं?

पेशेंट सपोर्ट ग्रुप मीटिंग हम सब के लिए बहुत ही आवश्यक है, इसमें हम सब को शामिल होना चाहिए। इस मीटिंग में हमें अलग अलग जगह से आये पेशेंट से मिलने को मिलता है। उनके अनुभव व इस बिमारी से होने वाली समस्याओं के बारे में जानने को मिलता है। आपस में अनुभव को बांटने से हमें कुछ सीखने सिखाने को मिलता है। मन का डर कम होता है। आपस में डिस्कसन करनें से अनुभवो को साझा करने व परिस्थितियों के अनुसार जीने में मदद मिलती है। मैंने कई मीटिंग्स अटेंड करीं हैं , बैंगलोर और कोलकाता में भी | इस मीटिंग के दुराण किये गयी “Effective Communication in Management of Chronic Diseases” वर्कशॉप एक बहुत नए अंदाज़ में दिखी | पेशेंटस को चार ग्रुप में बांटा गया और अलग अलग टॉपिक्स पर विचार करने को कहा | इसके बाद उन्हें  पूरे ग्रुप के सामने प्रेजेंटेशन करना था| सभी पेशेंटस को इस वर्कशॉप में उत्साह से भाग लेते हुए बहुत ही अच्छा महसूस हुआ |

3. आप भविष्य की मीटिंग्स में क्या देखना चाहेंगे?

निरंतर मीटिंग होते रहना चाहिए। इससे हमें सिखने को तो मिलता ही है पर अलग-अलग डॉ.का परामर्श हमारे लिए संजीवनी का काम करती है। अलग अलग प्रश्न  व विशेषज्ञों द्वारा उनका समाधान बहुत अच्छा लगता है। मीटिंग्स में अगर हम सपरिवार शामिल हो तोह मेरे हिसाब से वह पेशेंटस के लिए बहुत फायदेमंद हो सकता है | पूरा  परिवार एक पेशेंट के संघर्ष व परिस्थितियों से अवगत हो सकता है ।भले ही इसके लिए हमसे सहयोग राशि लिया जाये ,तो भी प्रशंसनीय होगा। 

4.  पेशेंट सपोर्ट ग्रुप मीटिंग्स  के अपने अनुभव में, क्या आप कोई विशिष्ट उदाहरण साझा कर सकते हैं जहाँ आपने किसी मरीज़ पर उल्लेखनीय प्रभाव या सकारात्मक परिणाम (पॉजिटिव आउटकम ) देखा हो? 

बालको मेडिकल सेंटर में आयोजित मीटिंग में परिचय के दौरान पता चला कि मैं यहां सबसे पुराना पेशेंट हूं। मुझे देख कर अन्य पेशेंटो का हौसला बुलंद हुआ होगा। मैंने जब अपना २४ साल अनुभव शेयर किया और बताया कि कैसे में हर काम आराम से कर रहा हूँ | यह सुनकर बाकि पेशेंटस बहुत प्रभावित और प्रेरित हुए । लोगों को मैंने जिंदादिल रहने की सलाह भी दी । लोगों ने मेरा मोबाइल नंबर भी लिया और संपर्क में रहने का वादा किया.। इस मीटिंग के दौरान मेरी मुलाकात एक ऐसे पिता से हुई जिनके 17 वर्षीय बेटे को हाल ही में सीएमएल का पता चला है। पिता ने कहा कि उन्होंने अपने बेटे को नहीं बताया है. मैंने उससे कहा कि वह अपने बेटे को सब कुछ साफ-साफ बता दे और हो सके तो अगली मीटिंग में अपने बेटे को लाने की जरूर कोशिश करे जिससे उसका मनोबल बढ़ने में मदद हो | मैं उनसे मिलने के लिए उत्सुक हूं!

Bhubaneswar Meeting Report by Rabindra Kumar Gouda

As part of The Max Foundation and Friends of Max initiative to organise Patient Support Group Meetings for CML and GIST patients and their caregivers in different cities, a meeting was held on Sunday, 4th February 2024, in Bhubaneswar, which also happened to coincide with World Cancer Day.

Rabindra Kumar Gouda, the local City Chapter Leader, was interviewed and asked to share his views:

  1. How do these gatherings impact individuals, and what emotions surface when connecting with the FOM Community?

The meeting provides patients an opportunity to meet and work with other CML patients coming from different parts of Odisha.  This interaction empowers us, we no longer feel isolated when we are allowed to speak openly of our CML experiences. All patients feel liberated as soon as they know they don’t need to hide or feel stigmatised anymore. 

2. Now it has been 20 years since we have been doing patient support group meetings, how do you think the meetings have evolved, what are the new changes in the discussions and workshops that you are seeing?

Since the inception of Odisha (then Orissa) PSGM I have been involved right from the planning right up to the execution stage of all meetings. Well ahead of the day we have close interactions with Sudha and other Max Foundation team members. For this meeting in particular, we especially planned a Volunteers’ Training Workshop to help Max identify and train a new band of FOM patient volunteers who can support the Bhubaneswar Chapter in its patient related activities. I am very pleased to share that the workshop went off well and we have had some patients who have come forward to volunteer. We will now follow up with these interested participants to counsel and help onboard them into the City Chapter Leader group of Odisha.  

3. What would you like to see in future meetings?

We need to ensure that as Odisha City Chapter Leaders we are able to organise more Chai for Cancer Addas and Patient Support Group Meetings. This means all of us including the newly identified group of volunteers need to be further trained and empowered to do the same in our own capacities.

4. In your experience with Support Group meetings, can you share a specific instance where you witnessed a notable impact or positive outcome for a patient?

It provides an excellent opportunity for patients to interact with multiple doctors on a single platform which otherwise is impossible to get.

Patients get clarity on different aspects of Cancer- TFR, nutrition, side effects of treatment just to name a few·        

Last but not the least when patients hear the same message on “Strict compliance to treatment and regular follow up visits” from different doctors (and not necessarily just from their own) they understand its importance and know they cannot ignore it anymore. It simply gives them the confidence and the encouragement to be more compliant.

Aurangabad Meeting Report by Jyoti Kanole

At the Patient Support Group Meeting organized by The Max Foundation for Friends of Max, on Sunday, 7 January 2024, for CML patients in Aurangabad, Jyoti Kanole, local City Chapter Leader, was interviewed and asked to share her views:

The patients become very emotional and look at FOM and the Max team as a close relative of theirs. It is a homecoming of sorts. We are able to meet other patients, become friends and draw comfort from each other.

The Max Foundation tries to give something new to the patient every time and makes special efforts to solve all their queries. No two FOM meetings are the same. This time during the meeting we had the Compliance Workshop, in which the message was clear.  For a CML patient it is of utmost importance to strictly follow their treatment procedures and regularly do the follow up visits to their physicians for regular checkups. Further during the meeting, the patients were freely allowed to ask questions directly to their physicians.

It would be nice if we could get more time to interact with the other patients. It is the highlight of all meetings.

What touches me most is the positive energy of each and every patient which becomes an inspiration for other patients as well. It provides that relief that we are not alone in our CML journey.

Hyderabad Meeting Report by Pramod Kumar Agarwal

At the Support Group Meeting organized by The Max Foundation for Friends of Max, on Sunday, 17 December 2023, for CML patients of Basavatarakam Indo American Cancer Hospital in Hyderabad, Pramod Kumar Agarwal, FOM Trustee and City Chapter Leader, was interviewed and asked to share his views:

  1. How do these gatherings impact individuals, and what emotions surface when connecting with the FOM Community?

Support Group Meetings play a very vital role in the lives of patients diagnosed with CML. Once diagnosed, patients are curious to know more about CML and how it is going to affect their lives. They have so many questions to ask and due to lack of time and maybe some hesitation, they are unable to ask their physicians during their OPD visits.  Having such meetings helps them to get their answers which in turn boosts their confidence and gives them the inner strength to cope with CML. They also understand that they are not alone in this and are able to discuss their condition better with their doctors. Both patients and care givers get moral support and strength to overcome and live life in a dignified way.

2. Now it has been 20 years since we have been doing patient support group meetings, how do you think the meetings have evolved, what are the new changes in the discussions and workshops that you are seeing.

Today in our group there are many patients who have been taking their medicines for the last twenty years or so. While on one hand our meetings help newly diagnosed patients find their answers on the basics about CML and managing the treatment side effects, on the other hand new sessions are continuously being added to help older patients (who have been on treatment for ten years and more and have been coming for our meetings year after year) to find answers to new and important topics like life expectancy, Treatment Free Remission (TFR) and other such advancements from the world of CML.  

The special workshop on ‘Know about CML’ App, helps patients to learn how to use technology to manage their CML, was conducted for patients for the very first time. Know Your CML App, which is a mobile App has been developed by CML Advocates Network, for CML patients by CML patients. The workshop helped to provide and teach the patients about the various features of the App and how it can be useful to them to track their CML and use as a self-management tool.

The Q&A session with the physicians was very informative. It was conducted in a friendly manner where the respectable doctors patiently provided answers to all the queries that were raised by the patients. As always, such sessions help to foster bonding between the patients and their treating physicians, thus helping patients to fight CML with ease and comfort.

At the end of the meeting the popular Art Therapy workshop was organised. All patients actively participated. Using art and colours to express their feeling of gratitude towards doctors, Novartis, The Max Foundation and Friends of Max, many new artworks were created. Art therapy workshop has always been an amazing session to provide an opportunity to patients to express what they are going through in life and how meetings like these are instilling a sense of hope and confidence in them.

3.   What would you like to see in future meetings?

I would like to see FOM benefits reach more and more CML patients from weaker economic backgrounds, who with their diagnosis are finding it hard to manage things. FOM should try and contact such patients and make them aware of the various projects run by it like its Project Shiksha, At no cost diagnostics by CORE and the monthly Patient Support Group Meetings conducted by The Max Foundation for FOM.

We should also try to get the resource and information about the various State Government schemes run for our patients. This information slide must be prepared and the patients should be made aware of the same during our support group meetings.

4.   In your experience with Support Group meetings, can you share a specific instance where you witnessed a notable impact or positive outcome for a patient?

I remember this patient’s case who during an eye checkup was diagnosed with CML. He was recommended to get in touch with The Max Foundation and its MAS program for access to free treatment. The patient who could not see but due to the MAS program has been able to fight and survive CML. It has helped to make his life somewhat easier. There is also another incident which comes to my mind about a patient who has been given the confidence and encouragement to go for Treatment Free Remission (TFR). FOM’s membership program is also making a positive impact on the CML community by reducing the financial burden of diagnostic tests, travel costs and increasing bonding with doctors.

Kolkata Meeting Report by Anshu Agarwal

At the Support Group Meeting held on 25 November 2023, for the CML & GIST patients at Tata Medical Center, Kolkata, organized by The Max Foundation for Friends of Max, Anshu Agarwal, FOM City Chapter Leader from Kolkata, was interviewed and asked to share her views:

  1.   How do these gatherings impact individuals, and what emotions surface when connecting with the FOM Community?

Support group meetings are essential for overall wellbeing of patients.  It is a great way to connect with other patients and share each other’s struggles. It is a lifeline for new patients as it gives a platform to talk to others who are going through the same/similar situations as them and makes them feel that they are not alone in this fight.  It is also a place for knowledge sharing which includes details about doctors, coping mechanisms on side effects, health and fitness etc.  Sometimes there are small and trivial things that one is unable to discuss with their doctors.  These support group meeting provide a safe and non-judgement space for patients to express their emotions, fears and concerns.

These gatherings also help to foster a sense of unity and camaraderie, reassuring patients that they are not alone in their struggles; many others share similar experiences. Those feeling low, draw strength from the positivity of others, cultivating an atmosphere of hope and encouragement.

For me personally, it provides me a great opportunity to meet with my fellow patient and caregivers’ community.  Being so busy in my day-to-day activities these meetings provide me with that reason to go and meet others and helps me to build new and rekindle old bonds.

2. Now it has been 20 years since we have been doing patient support group meetings in Kolkata, how do you think the meetings have evolved, what are the new changes in the discussions and workshops that you are seeing, you may choose to speak of the Know your CML App workshop, Unmet needs of CML patients, which have been held in the Kolkata meeting for the first time?

In today’s modern digital age to have workshops on “Know your CML” App is a welcome addition. I hope more and more people are able to use the App to help keep a track of their progress and to be in control of their lives in a contemporary way.

3. What would you like to see in future meetings?

To name a few:

If in future meetings, we could have smaller groups with patients segregated by the number of years they have been on treatment, discussions and learnings for patients could be far greater and specific to their current experiences. The different groups can be led by a member from the core team.

Have more progressive discussions with Senior doctors on contemporary topics related to the latest advancements in CML disease management from other parts of the world

Make effort to help increase the number of patients who attend the meeting with their caregivers to match FOM’s previous records of Patient Support Group Meetings.

4. In your experience with Support Group meetings, can you share a specific instance where you witnessed a notable impact or positive outcome for a patient?

A fellow patient, who has now become a friend, initially joined our FOM meeting in tears and filled with fear and anxiety. Anxiously concerned about his small children’s future, we provided comfort and reassurance. Over subsequent meetings, we witnessed his gradual journey towards normalcy. Today, he actively participates in all meetings, extending support to others dealing with their fears and challenges. This reinstates our faith in the goodness of Patient Support Group Meetings and motivates us to do more and more.

Key Insights by Manhar Koachar, FOM City Chapter Leader, Delhi, on the Patient Support Group Meeting held in Jaipur

To commemorate World CML Day 2023, a Patient Support Group Meeting was held on September 22, 2023, at Mahatma Gandhi Medical College and Hospital, Jaipur, for CML patients. It was organized by The Max Foundation for Friends of Max. We asked visiting FOM City Chapter Leader from Delhi, Manhar Koachar, to share his views:

1.  Importance of Support Group Meetings for patients?

Support Group Meetings offer a safe space for participants to connect, discuss their journeys, and gain a sense of belonging. By fostering a sense of community, these meetings significantly boost participants’ confidence and emotional well-being, helping them cope with their challenges with greater resilience and hope and provide comfort in difficult times.

In the Jaipur meeting, I was so pleased to see that FOM could arrange a testing facility provided by its diagnostic partner, CORE. All visiting patients were given the opportunity to have their BCR-ABL, CBC, KFT and LFT tests done at no cost. In my opinion, initiatives like this not only encourage and enable patients to comply with the mandatory testing and monitoring protocols, but it also provides a financial relief to an otherwise long-term diagnosis.

2.  What are your feelings when you meet the FOM Community?

It’s all about that warm, relaxed camaraderie and the sense of understanding that comes with it. It’s like a reunion of friends who share similar experiences, where you can enjoy that familiar, casual connection and heartfelt support.

3.  What are your thoughts on the interactive sessions organized at the meeting?

The interactive sessions at these meetings are a fantastic way for participants to engage, share their experiences, and learn from one another. These sessions often provide valuable insights, foster discussions, and create a dynamic, enriching environment that adds depth to the overall experience.

4.      Do you have any expectations from future FOM meetings?

I look forward to many more meetings. Further, if in the next meeting we could organise a hybrid mode that would be great! It would allow patients who are otherwise unable to come for the meeting to join online (like we did during COVID times). On one hand, this would encourage and enable many more patients to become a part of the FOM family, and on the other, it would help FOM scale up its new patient outreach.