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Raising A Cup For A Cause!

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

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

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

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

Introducing ‘Chaiathon’!

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

Our unique project for WORLD CML DAY 2019

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

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

We have 30 days to show that we care. 

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

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

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

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

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

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

World CML Day 2018

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

Download PDF – CML QoL Survey

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

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

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

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

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

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

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

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

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

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

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

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

Respondent profile:

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

 

 

Key areas of analysis

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

KEY FINDINGS:

SIDE EFFECTS

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

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

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

COMPLIANCE

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



DISCRIMINATION

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



FUTURE PLANNING

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


GIVING SUPPORT TO PEERS

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

FAMILY SUPPORT & SHARING WITH CHILDREN

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

FINDING A PARTNER

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

FACING ONE’S MORTALITY

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

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

They are:

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

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

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














Download PDF – CML QoL Survey

Welcome to Friends of Max!

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

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

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

(more…)

Virtual Patient Support Group Meeting for Kerala – Report by Ravi Kumar

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.

-Ravi Kumar

You can watch the live footage of this meeting using by clicking

5th FOM Leadership Summit 2021 – Report

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.”

Sudha Samineni (lt) & Aashray Paul (rt)
Pramod George (rt) as Bhai & Nirmesh Prakash (lt) as Bhidu

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.

Panel Discussion (clockwise from top left) – Dr Shyam Aggarwal, Dr Hari Menon, Dr Dr Hemanth Malhotra, Digumarti Raghunadharao

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.

Pranay Ranjan

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-

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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.

FOM Trustees Anil Nagpal (lt) and Shyam Kankani (rt)

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.

FOM Trustees Viji Venkatesh (lt) and S. Parameshwaran (rt)

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.

Q&A Segment

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.

Panel Discussion (clockwise from top left) – Dr Senthil Rajappa, Dr Pankaj Malhotra, Dr Bhawna Sirohi, Pat Garcia-Gonzalez, Dr Raghu Krishnaswamy, Viji Venkatesh

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.

Clockwise from top left – Pat Garcia-Gonzalez, Pramod George, Viji Venkatesh

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.

Prof. Subratanath Koner (lt) & Sujeesh Sukumaran (rt)

You can watch the recording of Day 2 of the Leadership Summit by using the YouTube link below-

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This report was made possible thanks to the efforts of our City Chapter Leaders J.P. Tiwari and Sandhya Godey.

Virtual Patient Support Group Meeting for Andhra Pradesh & Telangana, 30th Jan 2021

Report by 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.

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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 :

  1. 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

  1. 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.
  2. Am on GLIVEC 400 – less appetite of late. —— please check liver enzymes and kidney tests.
  3. 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.
  4. Thinning of skin —- very common in long tern GLIVEC issue. Be careful not to injure skin. Oil/ Moisturizer will help.
  5. Low HB, weight loss etc may be checked for other medical issues.

STOPPING GLIVEC

  1. 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.
  2. 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.
  3. 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.

SUPPLY :

  1. Consultations / appointments – talk with your doctor.  No cancer hospital was closed during lockdown.
  2. 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.

GENERAL :

  1. Monitoring already answered above .
  2. 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.
  3. Any special food restrictions while taking Glivec  ? some may face acidity issues , so less spicy food recommended. Other medical issues should follow those restrictions.
  4. Alcohol —— not recommended for any person.
  5. 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.

Vote of thanks was proposed by Sailaja Kosuri.

Anona Walter

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.

Virtual Support Group Meeting for Delhi NCR & UP

The Virtual Support Group Meeting for Delhi NCR & UP regions was organized by Friends of Max on 28th November 2020. It was attended by a hundred patients and caregivers.

What was originally intended to be a two hour long meeting ended up extending to almost three hours as a hundred patients and caregivers interacted with our doctors and FOM members.

The Max Foundation’s Priyanka welcomed our doctors and patients. This was followed by an introductory speech by FOM Trustee Anil Nagpal.

Dr. Dinesh Bhurani gave a very informative presentation on “Management of CML/GIST during the COVID19 pandemic”.

Next came the most awaited QA session which where our participants asked their queries to our panel of doctors including Dr Dinesh Bhurani, Dr Tulika Seth and Dr Gauri Kapoor as they very patiently gave their advise and cleared our patients’ doubts for more than an hour.

Next came The Max Foundation Programme Coordinator Prasad Kothekar, who gave a presentation on “Max Access Solutions (MAS)”.

Viji Venkatesh gave a presentation introducing Chai For Cancer and how our CFC Addas help spread awareness and raise money to help CML and GIST patients in need.

FOM City Chapter Leaders Shyam Kankani, Anil Nagpal, Manhar Kochhar, JP Tiwari, Rajdeep Singh and a few other patients then took their turns sharing their experiences as patients, caregivers and advocates of CML and GIST.

This was followed by all the participants of the meeting casually talking about their experiences dealing with CML and the help they have received from Friends of Max and The Max Foundation. Everyone lent their voices as we sang “Hum Honge Kamiyaab”.

Finally The Max Foundation Programme Coordinator Shalini brought the meeting to an end with her vote of thanks.

You can re-watch the Virtual Support Group Meeting on our Facebook page by clicking here.

Friends of Max Virtual Support Group Meeting – Tamil Nadu

The Max Foundation along with Friends of Max held their Tamil Nadu patient support group meeting virtually on October 31, 2020. Eminent Doctors, Dr D Biswajit, Dr Ganapathy Ramanan, Dr Jose M. Easow, Dr Krishnakumar Rathnam, Dr P Guhan, Dr Prasanth Ganesan, Dr Rejiv Rajendranathand Dr Revathi Raj participated in the meeting. The event started with a welcome speech, followed by general advice from doctors to CML survivors and caregivers.

The wonderful panel of doctors also answered all the questions posted in the meeting by the participants. 

General advices given by doctors were:

Dr. Ganapathy Ramanan, Stressed on the importance of the precautions to be carried out during the COVID times. The three simple parameters to be followed are Wear a Mask, Wash hands regularly and Maintain Social Distancing. 

Dr. Jose, Emphasised the patients to use Telecommunication and Phone Consultations during this pandemic times. But in need of an emergency patients are advised to go to the hospital. 

Dr. Rajiv Rajendranath, Instructed the patients not to stop Glivec or treatment for CML, if diagnosed with COVID. Not to try TFR (Treatment Free Remission) during the COVID times, to avoid frequent hospital and clinic visits.

Dr. Revathi Raj, Paediatric Oncologist gave valuable information for children on CML treatment. Since there is evidence on Bone Growth affected in children on treatment, she advised intake of Calcium Supplements and Vitamin-D on the advice of the treating doctor. She also mentioned discussion on TFR starts with parents once the child is on treatment for more than 7 yrs and responding well.

Dr. Krishnakumar, answered a common question on Cramps experienced by most patients. Regular mild exercises and physical activity was advised. For patients experiencing Gastritis, intake of medicine at proper times can help. He also mentioned that some side effects are not related to the disease or medicine itself. 

Dr. Prasanth, also emphasised the importance of following the precautions during this pandemic. For a question on intake of Ayurvedic Kashayams for COVID along with CML treatment? He stated that doctors are not aware of the implications these drugs have on Glivec, so patients were advised to take ayurvedic kashayams only if required.

Other questions that were addressed by the doctors:

Is CML hereditary? NO

Is treatment with Cord Blood possible? YES, it can be used from a matching donor for transplant purposes. 

Do CML patients have to follow extra treatment options if diagnosed with COVID? NO, follow COVID treatment and do not stop Glivec or treatment for CML. 

What is TFR, and what’s the criteria to qualify for TFR? TFR is treatment free remission. The patient must have been on the drug for a minimum of 5 years and it depends on the doctor’s advice to try TFR. The patient must be highly motivated, and should be ready to do frequent blood testing and BCR-ABL testing. It also depends on the psychological need of the patient to stop the treatment or need a drug holiday.

Is continuation of patients on Glivec 800mg dose safe? If the patient is prescribed 800mg, then it’s for a reason and it depends on the patient. There are trials on long term dose of 800mg and it’s safe.

Disadvantages of Glivec, It comes down to management of the side effects if any. If Gastritis, take medicine for it. Skin problems, Take appropriate precautions while sun exposure. Muscle Cramps, Gets better with supplements and exercises. Body Pains, take appropriate medicine prescribed by the doctor.  

If the side effects affect the lifestyle of a patient, then please consult your oncologist for alternative drug treatment options.

We also had FOM volunteers share their stories and motivate the other patients and caregivers. Viji Amma also explained about Chai for Cancer, a fundraiser for CML patients. 

The meeting was followed by Shalini from the Max team, she explained about the new program through which patients collect the medicines. Vote of thanks was delivered by Ashika from the Max team.

All the patients were very happy to interact with the MAX team and especially the everloving Viji Amma. 

The very effective meeting extended for almost 3 hours with lots of useful information sharing and loads of happiness. It was yet another very successful patient support group meeting in this new normal through the virtual platform.

Best Regards,

Archana Suresh- CCL- Tamil Nadu

Click here to watch the Virtual Support Group Meeting.

New Horizons GIST meet 2020

I had a wonderful opportunity to attend the first ever virtual New Horizon GIST meet held
for three days in the month of September 2020. Patient advocates and patient group
leaders from around the world came together virtually. There were 60 participants from 20
countries with 10 speakers. Leading GIST experts provided insights into GIST basics,
diagnosis, treatment, research as well as latest developments. The three day zoom meet
was insightful and informative.
First Day- 10 th September:
Dr. Hans Gelderblom (NL)
He spoke about:

  1. History of GIST
  2. Imaging and lab values
  3. Treatment options with various TKI’s
  4. C Kit gene mutations
    Dr. David Josephy (Canada)
    He is a scientist with experience in Cancer research.
    He spoke about:
  5. The molecular biology of GIST.
  6. DNA Sequencing of genes (mutation).
  7. Protein structure: Exons
  8. Diversity of mutation in GISTs
  9. GIST sub-types and their treatment
  10. New drugs: Avapritinib and Ripretinib.
    Dr. Peter Reichardt (Germany)
    He spoke about:
  11. Surgery of primary tumors at multiple sites.
  12. Adjuvant and Neo-adjuvant therapy.
  13. Influence of mutational analysis on treatment.
    Second Day- 11 th September-
    Dr. Albiruni Razak (Canada)
    He spoke about the metastatic or the advanced disease:
  14. GIST tumor biology.
  15. Response to treatment with Imatinib.
  16. Imatinib toxicities and dose management.
  17. GIST evaluation with FDG PET.
    Dr. Breelyn Wilky (USA)
    She spoke about managing progression of metastatic GIST:
  18. Biology of progression- KIT resistant mutation.
  19. Overview of current available treatments.
  20. Treatments with Sunitinib and Regorafenib.
  21. Understanding KIT mutations.
  22. Activity of TKI’s against various mutations.
  23. Different procedures to remove single progressive lesions.
    Dr. Jon Trent (USA)
    He spoke about:
  24. Mutational analysis and treatment with various TKI’s for metastatic disease.
  25. TKI’s:
    (a) Imatinib
    (b) Sunitinib
    (c) Regorafenib
    (d) Ripretinib
    (e) Avapritinib
  26. Primary and resistant mutations should be determined to provide optimal therapy.
  27. Liquid biopsy- circulating tumor DNA is a non-invasive tool to detect mutations.
  28. Differential Sensitivity to TKI’s.
    Third Day- 12 th September-
    Dr. Ramesh Bulusu (UK) and Dr. Casey (UK)
    They spoke about:
  29. Wild type GIST.
  30. Understanding the sub-types in GIST.
  31. Treatment for various sub-types.
  32. Non KIT and non PDGFRA mutant GIST.
    Dr. Robin Jones (UK)
    He spoke about:
  33. Off-label drugs for treatment of GIST.
    (a) Melotinib
    (b) Nilotinib
    (c) Dasatinib

(d) Sorafenib
(e) Pasopenib
(f) Everolimus

  1. Immunotherapy.
  2. NTRK inhibition in GIST.
  3. Current and upcoming clinical trials.
    Dr. Gina D’Amato (USA)
    She spoke about:
  4. Importance of professional therapy and side-effect management.
  5. Getting the best out of treatment.
  6. Tips for coping with the side-effects:
    (a) Nausea/vomiting
    (b) Decreased appetite
    (c) Altered taste
    (d) Diarrhea
    (e) Constipation
    (f) Swelling/edema
    (g) Skin and Hair changes
    (h) Fatigue
  7. Influencing factors such as exercise, nutrition, complimentary therapies etc.

– Nandini Dabbir, FOM Hyderabad

Patient Advocate of the Month – September 2020

Our Patient Advocates for the Month of September 2020 are Professor Subratanath Koner, FOM Trustee and his wife, Stuti Koner, FOM City Chapter Leaders from Kolkata.

Prof. Koner is an alumnus of Visva-Bharati, Santiniketan and Indian Association for the Cultivation of Science, Kolkata. He grew up in Santiniketan, Kolkata. Stuti studied at Elphinstone College, Mumbai and Jadavpur University, Kolkata, having grown up in three cities – Shillong, Mumbai and Kolkata.

Dr. Subratanath Koner is a professor of Inorganic Chemistry at Jadavpur University, Kolkata. Their daughter, Sakura Koner is pursuing her post graduation in Zoology from Calcutta University. She enjoys reading books. Together, they love travelling and eating out as a family.

Speaking about their contribution towards FOM, Stuti said that she has tried her best to be a worthwhile member of the FOM Kolkata City Chapter. In trying to help set up the city chapter, she took upon herself the responsibility of telephoning people, connecting them, educating and informing them about the aims and functions of FOM. Being a part of the organizing team helped her plan the agenda, formulate the requirements and act accordingly along with the help of other workers. Later, she had the satisfaction of seeing that everything went well. Today, as a part of the Kolkata group, she attends to patients who often call her for some clarifications. She tries her best to answer or guide them. “I hope to carry on serving as much as I can,” she said.

Prof. Koner volunteers with the City Chapter activities in arranging meetings, visiting hospitals to motivate patients and is a Trustee for FOM.

Recalling one of her experiences while volunteering at FOM, Stuti says, “Living in metropolitan cities we seldom realise the hardships faced by people living in far-flung areas. I had once called a patient to communicate a message on behalf of The Max Foundation. But I got to know that the phone number that I called on actually belonged to a friend of his. I was informed that he could not be reached then, because the river he had to cross to receive the phone, was in high tide. I was asked to call back later when the tide had subsided. What struck me was that The Max Foundation had taken him in its fold and managed to provide him with medications and support, even when such patients reside in the interiors of our country.”

Along with FOM, Stuti shared that she tries not to miss any opportunity where she can be of any help to others. “I derive great satisfaction from being able to support others in their difficult times,” she said.

Their message to other patients and caregivers is simple and inspiring:

“I want to say to the patients and caregivers that there is nothing to fear. When confronted with such news, fear cripples us but I want to assure them that they are in good hands and will be cared for. Simply have trust and faith in the Friends of Max,” says Stuti.

World CML Day 2020 – Today Together, More Than Ever

Every 22nd September, the CML Advocates Network leads the World CML Day global awareness campaign. On this day, chronic myeloid leukemia (CML) patients across the globe come together to raise awareness about our needs to the general public, policy makers, and medical professionals across the world. Today, together, more than ever due to the COVID-19 pandemic, the CML patient advocates need to connect as a worldwide community through digital tools by developing online activities.

The Max Foundation and Friends of Max are committed to observing World CML Day and are proud to be the voice of thousands of CML patients from the Indian Subcontinent. We stand united with CML Advocates and all the other patient organizations, healthcare providers and our CML friends across the world as we join the global movement under a powerful motto, “Today together more than ever. For a life without CML.”

This year, we conducted a simple activity asking our patients to send us their message on World CML Day along with an image or video, which we framed and shared on our social media platforms.


When there is a affair between your 9th and 22nd Chromosomes, the date 22/9 becomes a day to remember. It’s today christened as World CML Day
It’s like a anniversary to commemorate our existence with our Philadelphia siblings across the globe. Lot of awareness activities are conducted across the world.

With the new normal of us being in lockdown due to the pandemic, activities in India were restricted to only online activities. Survivors across the nation shared their testimonials either through their videos or supporting it with their pictures. Many of our FOM friends joined in the International webinar moderated by Dr Hemant Malhotra at 6:15
pm. Ms. Pat Garcia Gonzalez our mentor shared her views on Challenges in providing equitable CML care globally through a recording. Though it was 5:30 am in USA, Pat joined the webinar later for the Q & A Session. Pat’s talk was followed by other experts from our CML world. And of course our dear
Amma was an integral part of this International Speakers program.
7:30pm was the time for our virtual FOM get together … wow… Looked like people were just waiting for the clock to reach 7:30… 158 people were logged inform the length n breath of the country … the happiness to see our fellow CML friends was reflecting in all their faces.. The numbers swelled as the clock ticked forward. It was also live on Facebook for those who could not login on Zoom. Not only people from India but our friends from other neighbouring countries joined us… Nepal, Bangladesh & Sri Lanka.

We had the privilege of having Dr Hemanth Malhotra , Dr. Jayant Indurkar, Dr. Jina Bhattacharya, Dr. Pankaj Malhotra, Dr Guru Sah, Dr Arun Shahi, Dr Yunus from Bangladesh, Dr Mipsang Lama & Dr Gyan from Nepal alongwith our ever smiling beautiful Max Foundation team members.
Without much delay the question answer session rolled out. The session was once again moderated by Dr Hemant Malhotra. Amma read out the questions compiled by the Max Team from the patients. The session was conducted with a mix of English n Hindi for the benefit of our multilingual audience.


The usual doubts on CML were asked and as usual answered beautifully by our panel of doctors and the most important Dr Pankaj Malhotra helped with sharing his experiences of things to do & not do during the Covid pandemic. A big thanks to all doctors for spending their valuable time with us, especially Dr Hemant Malhotra for moderating the entire Q & A session.

Later on few patients shared their CML journey experiences over Zoom. Rashmie Fernando from Sri Lanka, Rajiv Kumar from Guwahati, Krishna Prasad Upadhyaya from Nepal, J P Tiwari from Bhopal, Shofiur Rahaman Sohag from Bangladesh, Krishan Modani from Jaipur & Prashant Kumar from Patna. Chaiathon was flagged off again this year by Amma saying let’s make 22nd September…a day to remember, reassuring all CML patients that someone somewhere while sipping Tea with family or in social circle is assuring the commitment to support with their donations. This activity will go from 22/9 to 30/9. It’s a assurance that we are not alone in this journey of life with Cancer.


Missing all the physical Chai for Cancer Adda’s this year; don’t worry God willing we will be back next year in a safer environment. Around 250 people joined on Zoom and lot more on Facebook. The meeting ended at 10:10 with a assurance that we will meet soon as we care for each other and look forward today tomorrow together more than ever.

– Pramod George, Friends of Max Trustee

Virtual Support Group Meeting – FOM Bengaluru

Together we share and learn

The Bengaluru CML and GIST Virtual Support Group meeting was held on 29th August 2020. The event was organised via Zoom app to assist CML patients in this COVID situation, around 100+ guests joined, where all the guests got the meeting invite through WhatsApp group and well-coordinated by Ms. Beena Narayanan and Ms. Ashika, Ms. Roopa, Ms.
Soumya , Mr. Param and all FOM volunteer. The Max Foundation team took great initiative in contacting the survivors & caregivers about the virtual meet happening in for the first time through Zoom App and noted down their questions before the meeting is started.


Ms. Beena introduced Amma who is the force behind everyone in The Max Foundation India. Viji Amma reassured all the patients of continued and complete support by Max on the patient assistant programme now and in the future also. The event then started with a welcome address by Ms. Beena. She welcomed all the doctors, guests and The Max foundation members. Ashika shared an important update on collection of Glivec tablets from a new outlet ie. Apollo Pharmacy, Malleshwaram, Bengaluru. She guided what all are the supporting documents are required to collect the medicines.


After this, the session was open for the Question and Answer session which was promptly answered by all the doctors namely Dr.Hari Menon, Dr.Shekar Patil, Dr.Krishna Prasad and Dr.Sachin Jadhav. Doctors addressed the gathering about the CML disease and the stages of CML. They gave very valuable suggestion on how to handle the side effects like vomiting, diarrhoea, muscle cramps, Vitamin D deficiency etc. A most common question for all the patients was whether the tablet can be stopped, how and when…? For this, our doctors clarified based on patients current situation, how they are responding to the treatment and from how many years their molecular response is zero, based on all these parameters consulting physician will take a call and one positive thing is we can stop the tablets based on the current health condition. Once the treatment is stopped, regular follow-up is required at least for two years.


This session was very helpful for the people who all are diagnosed CML recently and also they have got to know that there are many people who are leading a normal life with CML for more than 20 years.  After that informative presentation, Param was called to explain about Friends of Max. He spoke in Kannada and explained what the role of Friends of Max is and why it is was formed and how the meetings were organised etc. Also, the audience was told how to go about the registration to the Friends of Max. Chai for Cancer fundraising event was also explained in detail.

After this Ms. Ashika asked a few volunteers to explain their lifestyle with the Glivec and how they are collecting the medicines during this COVID situation. Last but never the least, CML is not a major health issue we can survive and lead the happy life with the Glivec and the program ended with positive energy.

– Kiran B S, FOM Bengaluru