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.
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
The 5th FOM Leadership Summit 2021: Unmasking CML & GIST – Life Beyond the Pandemic was the first FOM leadership summit which was organized virtually, on the 20th and 21st of February 2021. Every alternate year FOM organizes a Leadership summit for core group volunteers to update everyone about FOM’s plan , contributions and latest development in the field of CML and GIST care and medications.
Day 1 of the meeting began with the hosts Aashray Paul of Friends of Max and Sudha Samineni of The Max Foundation, welcoming all the members of the audience. The meeting was started by Nirmesh Prakash & Pramod George – two pillars & Trustees of FOM with their trademark “Bhai and Bhidu Show”. They explained about the entire program in their unique Mumbaiya style. They also emphasised about the need to follow protocol so as to stay safe from COVID19 & also motivated us by saying ,”When the Big C (Cancer) can’t do anything to us, then the Small C (Corona) is nothing to lose sleep over.”
After that, FOM Trustee & Treasurer Sunder Krishnan presented the annual report of FOM. He informed that the money collected on account of membership fee etc. and how it was spent for support of poor patients.
The stage was then set for our two City chapter leaders Dr Jude Vaz and Dr Raghu Krishnaswamy. They brilliantly moderated the excellent medical session. In this session, eminent physicians like Dr Mammen Chandy, Dr Hari Menon, Dr Pankaj Malhotra & Dr Ganapathy Ramanan delivered presentations on topics like Second Generation TKIs, Side effects of second generation TKIs, Generic TKIs & their efficiency & new drugs for CML & GIST patients. The session was excellent and every doctor explained their topics in detail so that our City Chapter Leaders could derive maximum value out of them.
Next, it was time for most awaited Question and Answer session which every FOM member awaited eagerly. The Q&A session was followed by the Panel Discussion on “Living with CML /GIST during the times of COVID and after”. The discussion was moderated by Dr Shyam Aggarwal, and the panel comprised of Dr Hari Menon, Dr Hemant Malhotra, Dr Raghunadha Rao and Amma.
This session went on for a while because the audience asked their queries to doctors and they answered every single one of them. In this session most of the questions were related to COVID & it’s vaccines – weather the administration of the vaccine is safe or not, which vaccine is better and other side effects, interactions with TKIs etc. There was active interaction with all the patients and caregivers carefully listening in.
After that highly informative evening, it was time for our Rockstar Pranay Ranjan, a Core Group Leader from Bengaluru who lifted our spirits with a power-packed performance to begin the evening entertainment segment, “Gaata Rahe Mera Dil”. We also had performances from our Trustee Sunder Krishnan, patients & very talented artists like Venky, Tanvi, Tusharkanti, Avinash and of course our own Amma.
And just like that with music, magic and nostalgia, we concluded Day 1 of our Summit – balanced equally with the perfect blend of information and entertainment.
You can watch the recording of Day of FOM Leadership Summit 2021 by clicking on the YouTube link below-
Day 2 began with Anil Nagpal & Shyam Kankani doing a quick but comprehensive recap of Day 1 Leadership Summit making sure not to miss out anything important yet making it interesting with anecdotes and even some poetry.
The first session this day was “Beyond Borders – Sharing and Learning from our International Brethren”. The session was chaired by FOM Trustees S. Parameshwaran and Viji Venkatesh. Amma had always dreamt of bringing our international brethren to participate in our FOM leadership Summits could finally do so even if it was at an online meeting. She talked about how COVID taught us how to harness technology despite being locked in and despite physical distance. Param introduced each international speaker and spoke about his own association with them at various forums.
First to share his experiences was Giora Sharf, who connected with us from Israel. and he spoke on – Bringing MPN into the Fold. Giora advocated Living life to fullest. On TFR for a few years now, Giora founded the MPN ( Myelo Prolifertive Neoplasm – CML falls under this category) support group in Israel which mirrors the work being done by FOM. Next, Rod Pdua, the Founder of Touched by Max in The Philippines spoke about how his organization conducts various events like Art works, exhibitions, blood donation camps, patient outreach programmes, etc. for all kinds of patients for multiple diseases. The next presenter was Dr Abd Razak, founder of Max Family in Malaysia. He shared the best practices in establishing and sustaining the success of Patient Support Groups. Talking on Issues faced by fledgling support groups was Shofiur Rahaman Sohag, from Bangladesh CML Supporting Group, who enlightened us about “Issues faced by fledgling support groups”. Next in line to speak on Latest updates in Disease Management from the Global CML Community was Jan Geissler, from the CML Advocates Network, who connected from Germany. Jan said that he thought that CML was like a tiger in a cage. CML is a cancer that with proper testing and diagnosis and treatment can be treated and controlled with options including many generations of TKI, Interferon, stem cell transplant etc. but it is like a tiger in cage that can kill if let loose.
After the highly informative international segment, Dr Jude Vaz and Dr Raghu Krishnaswamy took up the stage once again to commence the Medical Session. They expertly moderated the session as Dr Raghunadharao, Dr Manju Sengar, Dr Hemant Malhotra, Dr M B Agarwal, Dr Bhawna Sirohi and Dr Suresh Advani delivered precise presentations on “Latest updates on management of GIST”, “Monitoring Guidelines”, “TFR and its feasibility in the region”, “Is BMT the only solution when all else fails”, “Access Programmes – Challenges & Advantages” and “Management of long-term side-effects of Imatinib” respectively.
This was followed by the much awaited Q&A session, where attendees sent their queries, and the physicians very patiently answered each and every one of them.
After the Q&A session ended, it was time for a Panel Discussion on “Role of Non-Profits & Support Groups in line of treatment”, Moderated by Dr Senthil Rajappa. The panel comprised of Dr Pankaj Malhotra Dr Dinesh Bhurani, Dr Bhawna Sirohi. Dr Senthil began the discussion by asking all doctors on the panel to respond to the importance of support groups of Max Foundation and Friends of Max. All the doctors agreed that both Max Foundation and FOM were like family now and it was difficult to imagine CML care without the support of both. Dr Senthil also invited Amma to join the conversation, who informed the panel and the audience how Support Groups are the bridge between physician and patient. The Max Foundation helps patients in living longer. It has helped forge a stronger bond between patient and doctor. We are now partnering with other organisations to go beyond CML and GIST. All doctors have shown that all treating physicians have supported patients in whichever way they can.
It was finally time to hand over the proceedings to Pat Garcia-Gonzalez, who spoke on the topic “The Max Foundation & its Partner Patient Support Groups – Two decades of service”. She began with a powerful statement – “Where you live should not depend on if you live.” She outlined the vision of The Max Foundation “A world where all people facing cancer live with dignity and hope”, and how that vision was being implemented. She said that The Max Foundation and FOM are two separate entities, but have few common mission and purpose . She also talked about the evolution of the partnership between the two.
After Pat’s beautiful presentation, FOM Trustees Prof. Subratanath Koner and Sujeesh Sukumaran delivered a hearty closing address which left everyone in smiles as we came to an end of the two day long grand event.
You can watch the recording of Day 2 of the Leadership Summit by using the YouTube link below-
This report was made possible thanks to the efforts of our City Chapter Leaders J.P. Tiwari and Sandhya Godey.
The Patient Support Group Meeting for Telangana and Andhra Pradesh for 2021 took place virtually via a Zoom meeting on 30th January 2021. Over 175 participants – patients, care givers, doctors and the Max Foundation team took part in this meeting.
The meeting began with a formal welcome to all participants by Ms Sudha Samineni, Programme Officer- India & Nepal, The Max Foundation.
Ms Viji Venkatesh (Amma to the Max Foundation family) Region Head, India & South Asia, Max Foundation also expressed her happiness at meeting everyone, even if it was virtually. The program started with Ms Beena Narayanan, Programme Officer- India, Sri Lanka, Bangladesh, The Max Foundation introducing the esteemed panel of Doctors who made the time to join the meeting and address the concerns of the patients and care givers and also answer questions posed along various topics relating to treatment, COVID pandemic and other related areas of concern.
The doctors present spoke on the various aspects of the COVID situation and the best practices to follow for optimum results.
Dr Raghunadharao Digumarti- Chief Medical Oncologist – KIMS, Visakhapatnam spoke first on the new COVID vaccines and need for all CML/GIST patients to take the vaccine at the first available opportunity. He also outlined the methods of manufacture of the different vaccines and advocated the use of the vaccines by patients. He did however mention that patients under the age of 16 years are not recommended to take the vaccine since even normal healthy individuals under the age of 16 years are not being administer the vaccine for now. Both COVISHIELD and COVAXIN are safe to use he added.
Dr Raghunadharao also said that the use of masks, sanitisers and maintaining social distancing should be continued even after getting vaccinated since a person might be a carrier for a few months even after vaccination. The Vaccine may reach everyone only by May or June 2021 he said. Since studies on the efficacy of the vaccine are still in progress, safety precautions should continue until such time as the Government announces total freedom from the COVID infection and its spread.
Dr Sadashivudu Gundeti – Medical Oncologist- NIMS, Hyderabad shared that patients who contracted COVID recovered like oter normal healthy people. He added that during COVID lockdowns Max Foundation and Novartis did their best not to disrupt supply of Glivec to patients to ensure compliance. Options for online prescriptions and Tele consultation were given. He added that the Government amended lockdown rules to allow Oncology OPD to work as usual. Despite some doctors contracting COVID, they overcame their fears and continued treatments.
Dr M.V.T. Krishna Mohan- Medical Oncologist- Basavatarakam Indo American Cancer Hospital, Hyderabad clarified that since CML/ GIST patients have almost normal immunity, they have normal chances of contracting COVID and recover from it too. CML patients have no extra chance of complications. Immune suppressed patients like Thoracic cancers, active chemo patients, BMT patients may have more complications he added.
Dr S.V.S.S. Prasad- Medical Oncologist- Apollo Health City, Hyderabad seconded the view of Dr Raghunadharao. He added that any patients having issues with travel can make tele consultation appointments and collect medicine with prescriptions sent over what app.
Dr Krishna Mohan moderated the Q & A sessions. Questions were grouped along the following topics :
COVID related :
A) Anyone taking Glivec can take the COVIS vaccine.
B) Does GLIVEC have to be discontinued if patients wish to take vaccine – NO .
C). Should GLIVEC be continued during COVID treatment? YES , even during intensive care .
D) Astra Zeneca / Oxford vaccine is being made in India by Serum Institute – COVISHILED/ CIOVAXIN is same. Take any vaccine, but ensure the same vaccine is taken both times.
E) Can a CML/GIST patient with allergies take vaccine? YES. All allergies should be reported immediately. Vaccine will be administered only by Govt team after full case history. All resuscitation apparatus in place where vaccines are given.
F) Can a patient having COVID antibodies take vaccine or not ? — YES. Vaccine should be taken irrespective of antibodies presence.
QUESTIONS on SIDE EFFECTS
Muscle cramps and joint pain due to GLIVEC – usually these symptoms are short lived for a few months. Generic GLIVEC may also show some symptoms. Not all symptoms are due to GLIVEC. Vit D testing should be done in those with pains in joints and muscles and those above 50 years of age.
Am on GLIVEC 400 – less appetite of late. —— please check liver enzymes and kidney tests.
Leg swelling – could be other causes. Feet swelling may be due to Glivec. Joints and knees may have other causes. Ortho consultation may be done. Patients above 50 can request their medical oncologist to rule out cardiac and renal issues if any.
Thinning of skin —- very common in long tern GLIVEC issue. Be careful not to injure skin. Oil/ Moisturizer will help.
Low HB, weight loss etc may be checked for other medical issues.
Stopping Glivec may be considered under medical advice by consulting oncologist ONLY. After stopping GLIVEC, RT-PCR testing must be continued for alternate months for two years. About 120 medical oncologists in India are trying to make post Glivec testing free or low cost to enable stopping Glivec for more patents. 50% of patients DO NOT relapse after stopping GLIVEC.
Patients on GIPAP are put on hold after they stop Glivec in case they re-lapse. Patients should sign up for regular post stoppage testing.
Family planning – males – need not stop before wife conceives. Females are recommended to stop before conceiving or in unplanned pregnancy to stop as soon as pregnancy is confirmed. Glivec is not recommended during first trimester. Glivec is also not recommended when mother if breast feeding her child.
DASATINIB : muscular pains – pain gels may help. Not special to Dasatinib.
Consultations / appointments – talk with your doctor. No cancer hospital was closed during lockdown.
New outlets in Visakhapatnam and Vijayawada. Patients to call Max Foundation who will coordinate with the new outlets. Change of doctors is a personal choice. Can talk to your current doctor and change if you want to.
3. Only Designated Apollo pharmacy will dispense Glivec.
4. Old invoices can be kept with patients. PLEASE COLLECT zero value invoice,
5. Empty strips and boxes not required any more.
Monitoring already answered above .
What disclosure should be made to a dentist ? Inform dentist about CML/GIST, get a CBC done and get your procedure done. No need to stop Glivec. Low platelets counts does not recommend dental procedures.
Any special food restrictions while taking Glivec ? some may face acidity issues , so less spicy food recommended. Other medical issues should follow those restrictions.
Alcohol —— not recommended for any person.
CML patients even males should reveal CML status to future life partners.
Dr Raghu, A Friends of Max team leader and a CML patient himself, shared his CML story in brief. He took COVID vaccine with minimal side effects. Went back to regular work after a day.
Ms Sudha explained the new MAS PROGRAM and how its differed from the earlier program by sharing a slide show.
FOM Trustee Pramod Agarwal and City Chapter Leaders Sailaja Kosuri from Hyderabad and Sandhya Godey from Visakhapatnam shared their experiences during the pandemic and how the Friends of Max community with support of the Max Foundation overcame the battle against COVID. While Pramod urged more patients to join the FOM community, Sailaja shared her home remedies and tricks to evade COVID. Sandhya spoke on the importance of compliance as the single most important aspect in the struggle against CML.
Aashray Paul of Friends of Max shared social media handles of FOM and urged everyone to follow the handle most used by them.
Vicky Vatnani from Hyderabad FOM explained the concept of Chai for Cancer. Amma too pitched in with her thoughts on this unique fund raising concept and urged people to raise their cups of chai to benefit more patients who need support.
I am Anona Walter from Karnataka, currently based in Mumbai. I joined the Max Foundation family in 2020 as an Administrative Executive & Assistant Program Coordinator. It has been a great shift from being a Western Music Teacher for over 8 years to now working at a non-profit.
I strongly believe that “We are hand-picked & chosen to be in this word to serve with love & kindness; not to be served.” With this dignified thought in my heart, I am hoping to deliver the best of my capabilities in the face of cancer.