Virtual Patient Support Group Meeting, Ludhiana – Report by Sandeep Mahil

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. If the patient has tested positive?

Ans: 1. Don’t Panic  2. Don’t expect the worst 3. Check oxygen levels 4. Mild symptoms require isolation

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.

~Sandeep Mahil.

You can watch the live streamed footage of the entire meeting by clicking here.