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
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.
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.
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.
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:
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.
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.
To commemorate World CML Day 2023, and to mark the start of the Hem- Onc Fest 2023, conducted by The Clinical Hematology and Medical Oncology department of Post Graduate Institute of Medical Education and Research (PGIMER) in Chandigarh, The Max Foundation organized its 9th Patient Support Group Meeting, for Friends of Max, in Chandigarh on 22nd September 2023.
We spoke to Kuldeep Goyal, FOM City Chapter Leader, and asked him to share his thoughts and insights on the meeting:
1. Importance of Support Group meetings for patients?
Support group meetings are very important for patients living with CML, as they provide a safe and secure platform to share our experiences, clear our doubts and make us feel more confident about the treatment and medicine.
2. What are your feelings when you meet the FOM Community?
Friends of Max gives us a feeling of family. I feel extremely grateful for the support we get from each other.
3. What are your thoughts on the interactive sessions organized at the meeting?
Interactive sessions are very helpful. They help to provide a greater insight regarding CML, the disease and also, we receive other important information. Patients are able to talk to their physicians and clear their doubts.
4. Do you have any expectations from future FOM meetings?
Meetings are well organized and I hope we can keep organising such meetings in future as well as it provides a much-needed support. I thank all for the great care and support that is being provided to us.
To commemorate World CML Day 2023, The Max Foundation organised a Patient Support GroupMeeting for Friends of Max on 16th September 2023 at St. John’s Hospital in Bengaluru.
We spoke to Varadharajan Vaidhyanathan and his wife Lalitha Varadharajan, FOM City Chapter Leaders, and asked them to share their thoughts and insights on the gathering:
1. Importance of Support Group meetings for patients:
The support group meetings are very important for patients and caregivers. They provide a forum where they can discuss their problems which will be better understood. The meetings give them support and confidence. Arrangement for a blood test at no cost was very helpful to the patients.
2. What are your feelings when you meet the FOM Community?
Meeting the FOM community is a joyous occasion. We meet old friends whom we have not met for a long time. We also meet new friends who are eager to share their experiences.
3. What are your thoughts on the interactive sessions organized at the meeting?
The interactive session was very informative. There were eminent doctors present. Much light was thrown on monitoring the disease regularly. The effect of Imatinib on male fertility and the feotus was discussed in detail. Two patients discussed their journey through pregnancy. The art therapy session was fun-filled. It was delightful to see all drawing and colouring with childlike enthusiasm.
4. Do you have any expectations from future FOM meetings?
I look forward to many more future FOM meetings to illuminate the various aspects and developments in the field of CML.
Meeting report of the recently concluded GIST meeting held at Continental Cancer Centre, Hyderabad on 30th July 2023 as part of the GIST Awareness Day. The meeting was attended by members of The Max Foundation and Friends of Max. Adisri Sharma, FOM City Chapter Leader from Hyderabad was asked to share her views:
GIST Meetings are very useful for patients coping with their diagnosis. Patients who are in a constant dilemma about their current health and about the future, live with a sense of fear. But meetings like this help them to clear their doubts and instill a sense of courage and hope. Not only is the meeting useful for the patients, but it is also helpful for their family members.
The group of attendees at the meeting, which included physicians, pathologists, surgeons of gastroenterology and oncology, were all leading experts in their field. The Max Foundation team participated in this event, which was held at the renowned Continental Hospital. We will always remain grateful to them for providing all the support to the needy cancer patients, in the form of medicines and emotional support, which helps to boost our confidence and face our diagnosis with courage and hope.
The interactive session led by Dr P Jagannath and Dr Guru N Reddy during the meeting allowed the patients to share their experiences. Madam Viji Venkatesh touched us by highlighting her lifelong commitment to the foundation. The talks held by other doctors were equally informative and explained in detail about GIST and its management.
A big thank you to Dr. P Jagannath and the team at Continental Cancer Centre, The Max Foundation Team represented by Viji Venkatesh, Sudha Samineni and all my co-FOM City Chapter Leaders, Pramod Agrawal, Sailaja Kosuri, Krishna Agarwal, Pranay Ranjan and Samantha Reddy for making this possible.
At the Support Group Meeting held on 8th July 2023, for the CML & GIST patients at Jammu University, organized by The Max Foundation for Friends of Max, Vir Krishan Bhat, FOM City Chapter Leader from Jammu & Kashmir, was interviewed and asked to share his views:
1.Importance of Support Group meetings for patients:
Though the patients are on medication and are regularly consulting their doctors, patients still have multiple questions and doubts in their mind. Some questions they cannot share even with their family members or doctors. Such types of meetings help them to share these with fellow patients and get answers. In J&K most of the patients live in far flung hilly areas who do not have frequent access to the internet or to the social media. Most of the patients are not educated enough to understand the CML disease. Through their doctors and phone interactions they come to know of FOM. However, due to resource constraints they are not able to attend such meets organized across the country. Therefore, when they were informed by The Max Foundation that such a patient meeting is being held in their own state they availed of this opportunity and attended it from all the districts of the Jammu and Kashmir. Some had to travel for 10 to 12 hours to reach Jammu. They put up in Dharmshalas and other places but made it a point to attend the same. In the meeting they were educated by the doctors regarding the daily medicine protocol, timings, diet, life style and other important information. The patients interacted frankly and the doctors cleared all their doubts. It provided confidence and further will to the patients to fight the disease. Even their caregivers and family were enlightened about the treatment and some precautions to be taken, and were appreciated by the doctors and organizers for their valuable support to patients. The patients and their family members felt the importance of the meeting and hoped that many more such meetings will be held in the state.
2.What are your feelings when you meet the FOM community?
The feeling of the patients in the meeting was beyond any expression. The smile and joy were reflecting on their faces particularly when they saw Viji Amma at the registration counter on the meeting day. The sweet and encouraging words of Amma and Priyanka provided them with new hope and a fresh zeal of life. The literature provided at the meeting was very useful and was taken by all the patients. The Doctors response, power point presentation given by Priyanka and the Viji Amma opened the eyes of patients. The commencement of the meeting with the national anthem sung by a renowned professional singer Ms Sunita Bhan, gave a patriotic note to the meeting. Seating arrangements and serving of breakfast, lunch and tea added more colour to the program. During lunch the patients interreacted with each other and got a family feeling in the program without any caste, creed, colour, region or religion.
What are your thoughts on the interactive sessions organized at these support Group meetings?
The interactive sessions first with doctors was very educative and encouraging for the patients. The second session provided a new feeling and experience when Viji Amma divided all the participants into four groups for providing their valuable feedback and suggestions for FOM. In the brain storming sessions, the participants had a chance to interact with each other. The program was well organized with full cooperation from Dr. Sanjana Koul, Director, Biotechnology Department, Jammu University. The participation of research students of Biotechnology department added a new colour to the program. They were astonished to see the program and watched the encouraging statements from the patients. They expressed that though they had been studying, this was the first time they had a chance to interact with cancer patients.
3.Do you have any expectations from the future FOM Meeting?
I would like to see more such patient support group meetings held. Even they could be virtual meetings. With more meetings, more patients can be educated about the CML disease and learn how to manage their lives better.
On the occasion of GIST Awareness Day, a GIST Patient Support Group Meeting was organised by the Max Foundation for Friends of Max on Friday, 14 July 2023 at Indira Gandhi Cooperative Hospital in Kochi. We spoke to Mathew M V, FOM Patient Leader, and asked him to share his thoughts and insights on the gathering:
Importance of Support Group Meetings for patients?
This type of meeting is very important as it provides an opportunity for GIST patients to come together and share their experiences. It also provides clarity with regard to the disease and the available treatments. Today Glivec is one of the most effective medicines available to manage this disease. Many patients are living because of this.
What are your feelings when you meet the FOM community?
Friends of Max (FOM) community, even though for this meeting, the participants were fewer, the interactions were precious. The Max Team was courteous enough to hear our difficulties.
What are your thoughts on the interactive sessions organized at these Support Group Meetings?
The interaction sessions were led by eminent doctors to help patients cope with GIST, and to clear their doubts.
Do you have any expectations from the future FOM Meeting?
FOM patient support group meetings should be arranged at regular intervals and at different places so that patients from far off places can also attend. I would like to see more meetings held in other main cities of Kerala as well.
Grateful to Prof. Dr. Sanjana Koul, Director, School of Biotechnology at Jammu University, who helped us host our first Patient Support Group meeting for CML and GIST patients in Jammu on Saturday, 8 July 2023.
Below is her address to the gathering of patients, caregivers, physicians and research & Ph.D. students.
“We have gathered here today with a shared mission, to fight against the formidable adversary. It is with utmost gratitude and determination that I stand before you, honoured to address such a distinguished audience.
As we all know Cancer has touched the lives of countless individuals and families, leaving an indelible mark on our society. But as we convene here today, we are united by a common resolve: to confront this disease head-on, armed with knowledge, compassion and unwavering hope.
This workshop will serve as a platform to exchange ideas and expertise as we are privileged to have an exceptional group of healthcare professionals, scientists and survivors amongst us.
As I understand throughout this gathering we will delve into the latest advancements in diagnostics, treatment modalities and supportive care. Today’s discussions will span a wide spectrum including survivorship programs and the critical role of mental and emotional well-being in the face of this illness.
By creating an environment of empathy and understanding we foster a collective support system.
We are here to empower one another to share our experiences, and to ignite the spark of hope in those who face the challenges of Cancer every day. Together we will explore pathways to enhance patient care, promote research collaboration and advocate for policies that facilitate access to quality healthcare for all.
To all the cancer survivors present your courage and resilience inspire us. Your journey reminds us of the tremendous strength within the human spirit.
May the connections made and knowledge shared during this workshop serve as a catalyst for progress and bring us closer to the world where cancer is conquered and in this context role of the MAX foundation with Friends of Max as its arms has played a humongous and appreciable role.
Thank you for your unwavering dedication, your unwavering support and your unwavering presence.
Together we can make a difference. Together we share and learn.”
On 24 June 2023, a Friends of Max Support Group Meeting was organized by The Max Foundation for CML & GIST patients at the Rajiv Gandhi Cancer Institute and Research Center in Delhi. We spoke to Shashi Kankani, one of the FOM City Chapter Leaders and asked her to share her thoughts and insights on the gathering:
Importance of Support Group Meetings for patients?
It’s extremely important to have these meetings held at regular intervals as they provide a great deal of inner strength to the participating patients. The patients and their families and caregivers while attending the meeting gain accurate knowledge about the disease, which in turn makes them stronger. As we all know any hurdle can be overcome with a strong resolve. It’s been proven that along with medication it is extremely important to have a strong will power.
What are your feelings when you meet the FOM community?
It’s always a pleasure meeting the FOM community. I always look forward to these meetings. For me it’s more of a family get together.
What are your thoughts on the interactive sessions organized at these Support Group Meetings?
The interactive sessions help to give us an insight into the disease and its management. We have so many doubts. Some are even myths, which are cleared at these sessions. We have some patients who share their problems, so we as a group, also become more aware of them. Most importantly, we also come to know about latest drugs and advancements in cancer treatment.
Do you have any expectations from the future FOM Meeting?
I feel we should have these meetings conducted more often. I would also like to see more patients enrolled so that we can together fight this battle in a better way.
5. What do you think of the ‘Know Your CML App’ workshop held during the meeting?
It was an excellent workshop. We could educate all the patients and caregivers regarding the benefits of installing the App in a fun and interactive way. The patients could easily understand the benefits of App and few of them even installed the app immediately. Others promised to install as soon as they got home. The greatest benefit of the App felt by the patients was that it is handy App to keep all their records and in case of emergency can be very useful. Personally, in my opinion, I feel that this App must be installed by each and every CML patient.
At the Support Group Meeting held on 3 June 2023, for CML & GIST patients at Tata Memorial Hospital, Mumbai, organized by The Max Foundation for Friends of Max, visiting City Chapter Leader from Patna, Sanjiv Kumar Jha, was interviewed and asked to share his views:
Importance of Support Group Meetings for patients?
Support group meetings meetings play an important role in the lives of cancer patients. It provides a safe place where patients facing similar diagnosis can share what they are going through with each other. They can express their feelings, fears, and so do not feel so alone in their cancer journey. We are also able to make friendships through these gatherings. These friendships usually go beyond the patient support meetings, which help to provide the necessary comfort.
2. What are your feelings when you meet the FOM community?
I experience a strong sense of connection when I meet with the FOM community. It gives me a sense of belonging and support. We understand each other. It motivates and gives me the courage to face the diagnosis with positivity.
3. What are your thoughts on the interactive sessions organized at these Support Group Meetings?
Interactive sessions held at support group meetings are a valuable source of information about the latest cancer treatments, how to manage and deal with common side effects, and connecting with leading physicians. We patients, can exchange practical advice, discuss treatment options, and share other information without any hesitation. Sharing and learning from the experiences of others further helps us to make informed decisions.
4. Do you have any expectations from the future FOM Meeting?
My hope for the FOM community is that it gets bigger, better and stronger with each passing year.
5. What are your thoughts about the workshop on ‘Know Your CML App’ in Hindi for CML patients? Do you think this is beneficial to the CML community?
Yes, this app is very helpful for CML patients like us. Through this app, we can get positive solutions to the questions related to our life and our disease, as well as it helps us to adopt a positive lifestyle.
