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.
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
Age in years
No. of years with CML
Coping with Side effects
Being Regular in Follow Up
Receiving Family Support
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
Dealing with social stigma
Coping with pity
Dealing with fear
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
• 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.
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.
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.
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.
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.
As part of its World CML Day 2021 activities, Friends of Max created a simple survey whose main objective was to gauge disease awareness levels amongst CMLers and their caregivers. Google Form was chosen as the preferred mode of conducting the survey due to the wide familiarity, the ease of circulating the survey and the collecting of reliable data from the respondents.
To ensure maximum participation, Friends of Max circulated the survey using communication platforms such as WhatsApp where we are connected with approximately 1300 and an Email group where we are connected with another 700 members. We also circulated the survey on our Social Media platforms, namely Facebook, Twitter and LinkedIn. For ease of access, the survey was translated to Hindi and circulated in India and Nepal.
Responses were collected from 4th August to 9th September 2021, during which we received a total of 783 responses from 17 different countries. 85% of these respondents stated that they were CML Patients, whereas the rest stated that they were caregivers of CML patients.
The respondents generally showed excellent awareness in the following areas-
1. Basic concepts and acronyms related to CML (Q 1, 2, 3, 9)
2. Nature and cause of CML (Q 4, 16, 17)
3. Monitoring and treatment methods available (Q 10, 15, 18, 19)
4. First Generation TKI (Q 5)
5. Compliance and dietary restrictions (Q 12)
However, certain information gaps could also be observed in the following areas-
1. Second Generation TKI (Q 6)
2. Mutations related to CML (Q 8)
3. Drug Resistance (Q 20)
4. Stages of disease progression in CML (Q 11)
5. More technical questions about CML (Q 14)
Respondents were also found to have a tendency to avoid questions related to the following topics-
1. Second and Third Generation TKI (Q 6, 7)
2. Background of CML and its treatment (Q 14)
3. Drug Resistance (Q 20)
The expert panel presiding over the Analysis segment at the Virtual Gathering to discuss the survey made some pertinent observations. The panel comprised of physicians, patient leaders and the Max team. Some of their observations are listed below-
1. Dr Jude Vaz observed that different regions/languages may use different terminologies to refer to the same thing. Certain questions (like Q 2) may not have been understood by the non-English speaking population due to the language barrier and that could have an impact on the results of the survey.
2. Dr Dipanwita Maiti shared that most patients are familiar with brand names of drugs instead of their technical names, and suggested that if in certain questions (Q 5, 6, 7) the brand names “Glivec” instead of Imatinib, “Tasigna” instead of Nilotinib, and “Sprycel” instead of Dasatinib were used, it could improve the results for these questions.
3. Dr Raghu Krishnaswamy commented that the fact that most questions showed an accuracy of about 80% goes to prove the authenticity of the survey results.
4. Viji Venkatesh commented that in certain question (like Q 10), even though only 38% of the respondents have answered correctly, an additional 37% displayed knowledge of RT-PCR and could relate it to Bcr-Abl testing. The lack of awareness about FISH could be attributed to the fact that this method is no longer commonly used and thus the younger generation would be largely unaware of it
5. “Every answer is a correct answer” – Dr Pankaj Malhotra very aptly pointed out that just because there isn’t enough data to prove the correctness of something, does not mean that it is wrong. Cancer is a topic that has been researched on for decades and there are still a lot of areas where light needs to be shed.
The survey and the discussion at the Virtual Gathering has given us some deep insights into the information gaps that exist amongst CMLers and their caregivers-
1. Most of the questions in the survey were based on topics that have already been shared on Friends of Max’s social media pages. The low scores in these questions highlight the fact that this information is not being properly disseminated amongst the CML fraternity.
2. There is a need to focus on certain topics such as Second and Third Generation TKIs, CML mutations, relation between disease mutation and lack of compliance and drug resistance amongst CMLers.
3. There is also a need to remove certain misconceptions. For example, almost 10% of the respondents believe that CML is a hereditary disease (Q17). Similarly, 25% respondents believe that there are factors other than interchange of Chromosome 9 & 22 which can be responsible for CML (Q16). 17% respondents also displayed confusion between Grapes and Grapefruit (Q13)
Friends of Max is determined to take decisive steps to bridge the information gaps. A few steps that we plan to take in the near future towards achieving this are-
1. Encouraging patient leaders to stay updated and share relevant articles from FOM’s social media pages.
2. Ask physicians and experts at the patient support group meetings to address the topics where respondents showed lack of awareness/ existence of misconceptions
To read the complete report on FOM World CML Day 2021 Survey & Virtual Gathering, click here.
This year, World CML Day (22nd September) marks the 20th anniversary of the approval of the first targeted therapy in CML. It made a life-changing prognosis for CML patients all over the world and hence is considered as a landmark moment.
Every year Friends of Max and The Max Foundation celebrate World CML Day by organizing a Patient Support Group Meeting to bring together patients, caregivers and physicians. This year, as part of our World CML Day activities, we created a simple survey to gauge the Disease Awareness Levels amongst CMLers and their caregivers.
The Survey was circulated widely by Friends of Max over social media platforms like Facebook, Twitter, LinkedIn and Instagram; as well as WhatsApp and an Email group. By 9th September we had received 783 responses from 17 different countries of which 85% were from CML patients and 15% were from caregivers of CML patients.
The Survey helped us gain some very deep insights into the disease awareness levels and the information gaps that exist amongst patient groups and we wanted to share our learnings with our family of CMLers. So we decided to organize a Virtual Gathering with our CML family and an expert panel comprising of oncologists, prominent patient leaders, FOM Trustees and the Max team. This Virtual Gathering was organized on 19th September 2021 at 4PM on the Zoom platform. It was attended by over 120 patients, their caregivers, physicians and the Max team from all over India. We also had patient representatives from Nepal and Bangladesh attending this meeting.
The meeting began with FOM Trustee Pramod George explaining the importance of the World CML Day and why it is a day to be celebrated. He beautifully turned the exchange of chromosomes 9 and 22 into a love story, “A girl in room no. 9 started visiting a boy in room no. 22…..” He further stated that all CMLers are blood related and the date 9/22 is to be celebrated because it marks the rebirth of CMLers across the world. (TS- 0:02:14 – 0:05:01)
FOM Trustee Nirmesh Prakash then took the meeting forward and explained the rationale behind conducting the survey exercise and do so in his trademark “Bhai & Bhidu format”. (TS- 0:05:33) Some of the key points he mentioned were –
1. To ensure that everyone stays connected and updated in the world of CML – new techniques, medicines and treatments.
2. Friends of Max’s motto is “Together We Share and Learn” and we want to share what we have learnt from our physician partners, patient leaders and The Max Foundation.
3. To encourage people to research and find out more about CML.
4. To hear the voice of Friends of Max and get their feedback with respect to what we can do in the future to help reduce the information gap amongst patients and caregivers.
FOM Managing Trustee and The Max Foundation’s Region Head for South Asia – Viji Venkatesh then very kindly greeted the guests and shared her thoughts on the meeting so far, which was followed by a quick presentation on the Methodology and Outreach of the Survey by FOM Communications Manager Aashray Paul. (TS- 0:18:11 – 0:20:48)
Following a quick introduction of the day’s Expert Panel comprising of Dr Pankaj Malhotra, Dr Jude Vaz, Dr Raghu Krishnasawmy, S. Parameswaran, Dr Dipanwita Maiti and Beena Narayanan – we dove straight into the Analysis segment.
This segment was moderated by Viji Venkatesh and Aashray Paul and dealt with every single question featured in the survey. The results for each question were put on screen and panel members gave their explanations of the correct answer as well as their valuable insights on the level of difficulty, why they felt that people were able to answer/ not answer a particular question and other valuable suggestions. (TS- 0:21:07 – 2:20:00)
The Max Foundation’s Programme Officers Sudha Samineni & Anshika Tandon presided over the Open Discussion segment next and took the discussion to the audience. (TS- 2:20:21 – 2:53:24) After receiving some very useful feedback from the attendees, Max Programme Officer Priyanka Kandalgaokar delivered a very grateful Vote of Thanks. (TS- 2:53:25 – 2:58:19)
Casual conversation then started with the 60-odd attendees who were still keenly listening to the discussions. One thing led to another and Viji Venkatesh started an impromptu round of Antakshari where the sporty Dr Pankaj Malhotra stole the spotlight once again with his rendition of “Yaara o Yaara”. (TS- 3:03:00)
What a perfect way to end an amazing evening full sharing and learning together!
– Report by Aashray Paul, Communications Manager, Friends of Max.
*TS = Time Slot in the YouTube video
To read the in-depth analysis of the survey by our expert panel, click here.
I feel glad and honoured to be able to share a few thoughts about Friends of Max’s Virtual Support Group Meeting for Rajasthan. This meet was long overdue and very much required where the participants displayed unmatched enthusiasm to learn and ask questions. One of the highlights was that the exchange took place in Hindi which makes this even more accessible.
Dr Hemant Malhotra and Dr Lalit Mohan Sharma graciously and patiently explained the different aspects of CML, discussed the discipline required and cleared the misunderstandings. For e.g. The aggressive nature of the disease or the necessity of a bone marrow transplant. They also covered questions related to the often overlooked but very critical social impact of the disease such as getting married, starting a family, etc. One key point to note was that in pregnant females, approximately 10%-15% foetuses were born with some defect whereas no such impact has been reported for males.
The younger generation were very much concerned about passing on the disease genetically to the kids and the doctors explained that this was not a hereditary or a communicable disease. A normal, healthy, balanced diet was suggested and recommended along with a healthy lifestyle. They also emphasized on the importance of the routine and regularity in taking medication, regular check-ups and follow-ups with the doctor and how BCR-ABL tests would help in tracking and controlling the disease. Participants were also informed about the 2nd and 3rd generation of medicines manufactured in India.
A very important question addressed was when to stop the medication and was discussed in detail. It was suggested that medication could be stopped after 8 years of CML in remission and 3 years of 0 BCR-ABL but only under strict supervision of the doctor. This would require monthly BCR-ABL check-up for the first 6 months and then gradually increasing the testing timeline. It is important to trust the doctor and not be your own doctor because there are risks of relapse or reaching advanced stages.
There was a tremendous amount of participation and the question answer session was extremely fruitful. This was an incredible experience to meet everyone, the doctors and Viji ji. Her contagious smile and enthusiastic, energetic disposition just spreads positivity all around.
I would like to thank all organizers and The Max Foundation team for the hard work that went behind this meet and made it a big success.
The pandemic could not dampen the spirit of Friends of Max and The Max Foundation team, the patients and the doctors. GIST Awareness Day 2021, which falls on 13th July, was enthusiastically observed via an online meeting on 10th July, and was attended by over 85 patients. We had the opportunity to hear from the best in the field – Sudha Samineni of The Max Foundation, Dr. D Raghunadharao, Dr Arun Shahi (Nepal), Dr Bhawna Sirohi, Dr Gyan K. Kayastha (Nepal), Dr Krishna Sagar (Nepal), and Dr. Mohandas K. Mallath. The Question-Answer session was moderated by our very own live wire Viji Venkatesh.
The gathering was very motivating and uplifting for all the patients – we learnt about how to cope and deal with GIST, how to build a positive state of mind, how to help and support the larger community. The session on expressing gratitude by Beena Narayanan highlighted how there is “always” something to be thankful for and how this small emotion can so powerfully and magically shift one’s perspective and build a positive state of mind.
The opportunity to connect with the Patient Support Groups of Nepal and Sri Lanka was another key highlight of this year’s meeting. We heard about all the wonderful work being done in these countries. I felt proud to be part of such a vibrant and global support group.
The Virtual Art Therapy Workshop was a unique addition to this year’s program and was a visual delight! Patients and their care givers brought alive emotions attributed to the GIST acronym – Gratitude, Inspiration, Strength and Togetherness – through a mosaic of artworks. The splash of colour, abstract expressions of creativity, the innumerable dimensions of these emotions brought alive through art, created a world of wonder. Many of these artworks are still available to be seen on this link.
Certainly worth a look!
Overall, the meeting, as always, was a true reflection and re-iteration of all we stand for at Friends of Max and The Max Foundation – solidarity, strength and togetherness. Always supporting and inspiring us. We all look forward to the next opportunity to meet and connect.
Twenty years ago, on May 10th 2001, the FDA in the US approved a drug called Glivec for the treatment of Chronic Myeloid Leukaemia. This drug, we had heard, had been granted what is called a priority review and the FDA had approved it after just over a two-month review time.
It was oral therapy – a pill that promised to convert a fatal cancer into a chronic manageable disease. And oh boy did it keep its promise! Named “The Magic Bullet”, that’s exactly what it did.
Today, thousands of patients who would have otherwise not survived even a few years, thank what they call “The Gift of Life”, which has not only given them extension of life but quality of life.
Glivec burst upon the firmament of cancer therapy and changed the way treating physicians would look at their CML patients from then on and the way the patients themselves would look at their lives.
And to think that we are a part of what has gone into the making of an amazing bit of medical history. When I received a file from Novartis India in early 2002 with the names of the first 22 names to be enrolled into their PAP for this drug, little did I imagine where this was going to lead.
In no time the numbers of CML & GIST patients grew into hundreds and over the next couple of years into thousands. Patients who had to be on life-long treatment – patients who were living with cancer.
The Max Foundation put together a team in India as we did in countries all over the world where we managed this Programme. In India I set up the first ever Patient Support Group of its kind so patients and their families could have a safe platform from where they could share and learn from each other.
They were told they were lucky that they had been diagnosed with a ‘good’ cancer and would live a normal life as long as they took the drug every day. Yes, it was easier said than done and we at The Max Foundation knew we were there to help every patient deal with this incredible situation in their life.
Today we have in South Asia, as world over, have little children grown into young adults, young adults become householders and advancing in their careers, householders seeing their children settled and retired pensioners settled comfortably in their twilight years spending time with their loved ones. Every patient has a story to share and in every story several lessons to be learnt.
“Together we Share & Learn” is the FOM maxim.
Listen to what Friends of Max leaders have to say about their journey with CML, GIST and Glivec-
1. J. P. Tiwari (Bhopal, Madhya Pradesh)
“Nothing is impossible if one sets their mind to it”- Invention of the magic bullet just proved the above statement true! Glivec has lit up the lives of so many CML & GIST patients and we will always be thankful to Dr. Brian Druker and Novartis for it.
2. Yogesh Bhasin (Delhi)
Glivec turned out magical for me as I was feeling like a fish out of water.
3. Francis D’Souza (Mangalore, Karnataka)
We are grateful to Pat Garcia-Gonzalez, who took the initiative after the demise of her step-son Max to start this work in his memory along with the whole team for their selfless contribution in their different fields to make our lives worth it. God bless you one and all we love you and pray that God showers his abundant blessings on you all.
4. Shashikant Jakhade (Pune, Maharashtra)
Since childhood I had heard about magical things but never really saw one. But when Glivec came in my life I experienced real magic. I was diagnosed with CML & lost all hopes from life. But this “Magic Bullet” gave me back my lost hopes of living a life full of joy and happiness. I have lived this normal life for the last 17 years only because of this medicine. Thank you Novartis, Thank you Max, Thank you Glivec.
5. Ramnath Agarwal (Indore, Madhya Pradesh)
Initially, the lives of CML & GIST Patients was like a candle which could be blown off at any time, but then came Dr Brian and Novartis, and they came like a Sun and spread sunshine in the lives of patients. We all are indebted to them and convey our heartiest thanks to them and to Pat and the Max team.
6. Trupti Hakani (Pune, Maharashtra)
In Ramayana the medicine “Sanjeevani” was brought by Hanuman. In this century, our Hanuman is Dr Brian Druker, Novartis and our Max Foundation who brought Sanjeevani in the form of Glivec for all CML & GIST patients.
7. Rashmi Sachade (Mumbai, Maharashtra)
Glivec is not just a magic bullet, but it is magical! It lets me spread smiles, confidence and love in others’ lives.
8. Manhar Kochhar (Delhi)
Glivec is the only bullet that does not kill but saves lives.
8. Nitesh Verma (Ara, Bihar)
Glivec is a feeling of hope, trust, life, strength, happiness and more to all CML & GIST patients. Thanks to all doctors and patients who were involved in the research of this “Magic Bullet”.
9. Pramod George (Mumbai, Maharashtra)
GLIVEC – Game changer and life saver for me and many of my CML brethren across the globe. You have added years and years to our life, our families are blessed.
Fortunate to be a part of the history of this magic bullet. First as part of the clinical trial and then as a beneficiary of GIPAP and Max Foundation. First fired in 2000, it continues to make its healing way through so many lives.
11. Sailaja Kosuri (Hyderabad, Telangana)
18 years ago, I was diagnosed with CML. I thought it was a death sentence. But my oncologist reassured me that there was this new drug Glivec which is showing wonderful response in patients. And it was true!!
We’re all blessed to get this life saving “Magic Bullet” called Glivec and lead a near-normal life. God bless Dr Druker for his invention and giving us a second chance at life!
As they say “What Doesn’t Kill you, makes you Stronger!” I’m a better me today! Ever grateful and thankful to Pat Garcia-Gonzalez, The Max Foundation, Novartis, Viji Venkatesh and FOM – everyone is a blessing from God!
12. Avinash Dev (Bengaluru, Karnataka)
Super Bullet Glivec took me from man to superman. It has been 17 years and my latest blood report, taken fittingly yesterday on its birthday, was all clear! All thanks to God, the scientific community and everyone else involved in bringing us this great gift!
13. Nagendran Nagarajan, Chennai
Glivec is gift from The Max Foundation & Novartis to us. A life (Max) was seeded to rest but it sprouted to thousands & lakhs of lives, energy and smiles.
14. Vedamuthu Michael, Chennai
Glivec is not just a tablet, it is magic. Novartis and The Max Foundation are the magicians. When my health was in a serious condition, I wished for magic in my life. My wish was granted in the form of Glivec tablet. After this magic I’m living a happy life. Thanks Novartis and The Max Foundation for making this happen 20 years ago.
15. N. Sasikumar, Chennai
“Miracles happen to those who believe in them.” I believed Glivec and The Max Foundation, and it has changed my whole life.
The Max Foundation and Friends of Max had organized a Virtual Support Group Meeting for CML & GIST Patients in and around the city of Ludhiana, Punjab. The meeting was attended by more than 130 patients, physicians, caregivers and volunteers through the video conferencing platform Zoom.
After initial greetings from patients to Amma and her wonderful team at Max Bombay which works tirelessly for more than 18,000 CML and GIST patients in the Indian sub-continent, Priyanka of the Max Foundation kicked off the meeting by announcing the agenda for the next 2 hours, followed by a presentation on Max Foundation which is an international organisation based in Seatle, USA. The foundation has 60 branches across the globe with the objective of helping patients.
The first speaker at the meeting was Dr Anubha Bharthuar from Patel Hospital. She stressed on Compliance and Vaccination. She ended by wishing patients a safe and healthy life.
The second guest speaker, Dr Joseph John from Christian Medical College (CMC), Ludhiana also stressed covid vaccination and urged everyone to “Get their shots Today”.
Then, Sudha from The Max Foundation took over the meeting and introduced the Medical Panel for the Q&A session.
Amma commenced the Q&A session, the panel for which comprised of Dr Anubha Bharthuar and Dr Pankaj Malhotra. It was a highly informative session for all the patients which was very well organized. The questions were classified into various categories such as “Side Effect of Imatinib”, “TFR Related queries”, “Family Planning”, “COVID Related”, “Supply Related” and “Diet & Nutrition”. After that very enriching session, Amma acknowledged that all the patients were thankful to the doctors and no words can explain their help and contribution.
Some of the questions asked and their answers are listed below-
Q. Shall we take COVID vaccines?
Ans (Prof. Pankaj Malhotra): Yes. Get your shots asap and wait for 4 weeks for the second dose.
The patients may experience body aches or fever for a couple of days after the shot. And patients should take paracetamol for these two symptoms.
Patients having diabetes and blood pressure can also take vaccines. CML patients under all TKI therapies ( Imatinib of all dosages (300, 400, 600, 800)mg, Nilotinib, and so on, can take vaccines.
Q. What if caregiver/patient gets COVID
Ans: For caregivers 1. Isolation 2. Monitoring Signs and Symptoms 3. Test 4. Quarantine
When a patient gets COVID, 1. most will get mild disease 2. Get tested 3. The majority can stay at home.
Q. What protection can we use against COVID?
Ans: 1. Social Distancing, 2. Hand washing, 3. Masks
Q. Can we use supplements, vitamins, or Ayurvedic Medicines for protection against COVID?
Answer: No need for any of the above. Ayurvedic medicines may interfere with Imatinib. A normal diet is sufficient.
Q. How do I deal with puffiness around eyes due to Imatinib?
Ans: Puffiness is generally experienced during the morning and subsides during the day. Intake of less salt is advised. And you should consult your doctor. There is a medicine available to control puffiness.
Q. Cannot sleep at night?
Ans: This condition is unrelated to CML. You need to consult your doctor as there can be some other condition causing this problem.
Q. Issues relating to females patients during periods?
Ans: You need to consult your gynaecologist/doctor for this issue.
Q. Cramps in legs and feet?
Ans: Generally new patients have this problem. Normally, it goes away automatically with time. Drinking adequate water and Calcium is advised in the beginning. Cramps can also be age-related especially in females during menopause – due to hormonal changes in the body. In men, it may be because of deficiency of Vitamin D and Calcium. You need to consult your doctor for this.
Q. Changes in eyesight, hearing problems, and weakness?
Ans: Again these are unrelated to CML and you need to consult the doctor for them.
Q. Skin colour changes and dark patches?
Ans: This is a known side effect of Imatinib. And there is no medicine for this issue. You can deal with it with make-up in case you want.
Q. Nausea and vomiting at the start of medicine (TKIs)?
Ans: These problems go away gradually. You can consult our doctor. You must not change the dosage yourself.
Q. Unbearable pain in the abdomen/kidney area?
Ans: You need to get a check-up. Generally, your doctor will get an ultrasound and/or an X-ray scan to find the problem.
Q. What do I do in case I have depression?
Ans: There is an interaction of psychiatric drugs with Glivec. So you need to consult your doctor so that you take drugs that have no interaction with your CML medicine.
Q. Can I stop the medicine?
Ans. Medicine can be stopped in a specific case with the consultation of a doctor. You must not stop the medicine on your own as the disease can come back. This is a matter that cannot be taken lightly.
Q. Can I donate organs or blood?
Ans. Blood donation is not possible. Although CML does not affect organs, it is not permitted under government guidelines.
Q. Procedure booking of appointments for PGI?
Ans: The phone number for an appointment is 0172 275 5991. You can call between 8 am and 9 am on Mondays, Thursdays, and Saturdays.
Q. Can I take medicine from a different Apollo Pharmacy in case of getting transferred to another City/State?
Ans. You need to call Priyanka at Bombay for this change. You can also talk to your doctor.
Q. What do I do in case of Acidity, Weight gain, or indigestion?
Ans: You need to consult your doctor in these situations.
Q. What are your final thoughts to wrap-up this Q&A session?
Ans. 1. Compliance 2. Other diseases can happen which are unrelated to CML 3. Dosage of Glivec can be changed only by the doctor 4. Patients taking medicines for a long time – up to 27 years and still going are real heroes for their doctors and they must share their experiences with others.
After the Q&A segment, The Max Foundation’s Beena Narayanan delivered the Vote of Thanks. She thanked the doctors for taking out their time for sharing valuable insights and giving valuable advice to patients by answering their questions as well as sharing their videos. She also thanked all the Max team members, FOM City Chapter Leaders and Volunteers who helped in organizing the event, as well as the patients for attending it.
Next, The Max Foundation’s Jyoti from the Coimbatore gave a presentation on Max Access Solutions (MAS) launched last year in March. She also shared video testimonials from FOM Chandigarh City Chapter Leaders Balbir Singh, Kuldeep Goel, Devendar Kalra and Meena Sharma.
Amma stressed the importance of wearing a mask through our new mascot Sonu Bhaiya. She also shared a very important presentation on Compliance. The presentation was very easy to understand and explained through surveys, graphics and flowcharts important topics like “What is compliance”, “Why it is necessary to regularly take Glivec”, “Why people fail to comply”, “Causes of poor adherence” and “What can be done to ensure adherence”.
Amma also talked about the launch of Chai For Cancer Season 8. This year their tagline is “Ek Chai Zindagi Ke Naam”. It is the fundraising initiative of Friends of Max and the money goes to charity for cancer patients.
Shyam Bhaiya from Delhi, who is a Trustee of Friends of Max and also a caregiver, shared his experience where he said “I don’t consider myself a ‘caregiver’. I consider myself a ‘Love Taker’”. He also stressed taking the COVID vaccine and donating towards Chai for Cancer.
Finally, the Communications Manager for Friends of Max, Aashray Paul, shared a PPT on “Friends of Max” – its principles, goals and its activities. He urged everyone to follow Friends of Max on Social Media to stay updated with latest activities of the organization.
This was followed by everyone casually greeting each other and talking about how thankful they are to Friends of Max and The Max Foundation for organizing these meetings and how much they miss the physical gatherings! The event ended as everyone said their goodbyes and left the meeting with a smile.
You can watch the live streamed footage of the entire meeting by clicking here.
The first ever Virtual Patient Support Group Meeting in Kerala was held on 27th March 2021. Even though it was the first time and majority of the participants were new to the concept of virtual meetings, it became a big event with a strength of 105 participants.
The meeting started with a welcome speech by our dearest Beenachechi from The Max Foundation and all of us were blessed with the darshan of Amma. It was followed by the much awaited panel discussion by veteran oncologists from across the state on “Management of CML/GIST during the COVID 19 Pandemic”, hosted by Sudha ma’am from The Max Foundation. The discussion was very informative and was a guideline for us with the inputs from Dr VP Gangadharan, Dr Narayanan Kutty Warrier, Dr Pavithran and Dr PS Sreedharan.
The Q&A Session with medical experts was the first of its kind for us during the Pandemic and was well moderated by Dr Sajeevan, who made us comfortable with his unique style of asking the very informative and the beautifully compiled queries of the participants by Beena Chechi. In the Q&A session the Expert doctors showered their kindness by answering very common as well as rare topics relating to CML, such as – side effects of Imatinib, 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 the life improvement of CML/GST patients with the magic bullet, and also how to take precautions against the Pandemic, regarding the Covid vaccine, etc.
Certain changes took place in collecting the medicines, the change from GIPAP programme to MAS programme and its guidelines, the way FOM worked during the lockdown period and how its activities are being managed during the pandemic time, the Do’s and Don’ts while going to collect the medicine – these topics were all well explained by Max’s Programme Officer Beena Narayanan.
Testimonials were shared by Mohan Kumar, VK Mujeeb, Sreelaja, Shaji T, and Chitralekha where the speakers shared the lessons they learnt from having dealt with CML/GIST and Glivec in their lives.
FOM’s Communications Manager Aashray Paul explained about FOM’s social media presence on Twitter, Facebook, LinkedIn, Instagram and Whatsapp, and its aim and the operations, how it is getting updated and the different topics updated every day.
Amma then explained about Chai for Cancer, the fund raiser programme of FOM India- how it is being conducted, the experiences from different parts of the country including the ones conducted in Kozhikode, how the funds are used for improving the life of CML & GIST patients, etc. The programme was concluded by a Vote of Thanks by Sajeevan, FOM Core Group Leader from Kozhikode.
The meeting was a source of confidence for many, also it showed the proper direction to sail in the tough time of the pandemic. There were many first time participants for whom it was a blessing and it was a comfortable platform for all to meet after couple of years
Thanks a lot to the organizers of the event, it was organized in such a way that we did not feeling it was a virtual one. Thanks a lot to Amma, Beenachechi, Sudha and all the Max and FOM members and the doctors for conducting this virtual meeting.
You can watch the live footage of this meeting using by clicking